Fibromyalgia 

Introduction 

Fibromyalgia: Suzanne's story

Suzanne has fibromyalgia, a chronic condition that causes pain all over the body. She describes how it affected her and how it can be treated.

Media last reviewed: 21/07/2013

Next review due: 21/07/2015

Fibromyalgia, also called fibromyalgia syndrome (FMS), is a long-term condition that causes pain all over the body.

As well as widespread pain, people with fibromyalgia may also have:

  • increased sensitivity to pain
  • fatigue (extreme tiredness)
  • muscle stiffness
  • difficulty sleeping
  • problems with mental processes (known as "fibro-fog")  such as problems with memory and concentration
  • headaches
  • irritable bowel syndrome (IBS)  a digestive condition that causes stomach pain and bloating

If you think you have fibromyalgia, visit your GP. Treatment is available to ease some of its symptoms, although they are unlikely to disappear completely.

Read more about the symptoms of fibromyalgia.

What causes fibromyalgia?

The exact cause of fibromyalgia is unknown, but it's thought to be related to abnormal levels of certain chemicals in the brain and changes in the way the central nervous system (brain, spinal cord and nerves) processes pain messages carried around the body.

It's also suggested that some people are more likely to develop fibromyalgia because of genes inherited from their parents.

In many cases, the condition appears to be triggered by a physically or emotionally stressful event, such as:

  • an injury or infection
  • giving birth
  • having an operation
  • the breakdown of a relationship 
  • the death of a loved one

Read more about the causes of fibromyalgia.

Who is affected?

Anyone can develop fibromyalgia, although it affects around seven times as many women as men. The condition typically develops between the ages of 30 and 50, but can occur in people of any age, including children and the elderly.

It's not clear exactly how many people are affected by fibromyalgia, although research has suggested that it could be a relatively common condition. Some estimates suggest nearly 1 in 20 people may be affected by fibromyalgia to some degree.

One of the main reasons it's not clear how many people are affected is because fibromyalgia can be a difficult condition to diagnose. There is no specific test for the condition, and the symptoms can be similar to a number of other conditions.

Read more about diagnosing fibromyalgia.

How fibromyalgia is treated

There is currently no cure for fibromyalgia, but there are treatments to help relieve some of the symptoms and make the condition easier to live with.

Treatment tends to be a combination of:

Exercise in particular has been found to have a number of important benefits for people with fibromyalgia, including helping to reduce pain.

Read more about treating fibromyalgia and advice on self-help for fibromyalgia.

Support groups

Many people with fibromyalgia find that support groups provide an important network where they can talk to others living with the condition.

FibroAction is a charity that offers information and support to people with fibromyalgia. If you have any questions about fibromyalgia, call the charity's helpline on 0844 443 5422.

There is also a network of local FibroAction support groups you may find helpful and a FibroAction online community, where you can find out about news, events and ongoing research into the condition.

Other useful support groups are Fibromyalgia Association UK and UK Fibromyalgia.


Page last reviewed: 05/02/2014

Next review due: 05/02/2016

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The 266 comments posted are personal views. Any information they give has not been checked and may not be accurate.

loud2731 said on 07 October 2014

BHPAUL sorry that your wife moved out. Being in denial may be the best thing because it sounds like she is getting on with things and managing to ignore the pain. Sadly there is no help available esp from the NHS. I have had no help for 23 yrs and just made a Dr give me painkillers just so that I will be able to ignore the pain, walk, clean and be able to sort out all that has gone wrong in in my life.

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Julierober said on 21 July 2014

I've just recently been diagnosed with fibromyalgia and want to ask do you eventually get rid of it and does it get worse and how bad can it get?

Thanks

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sumblondegirl said on 20 July 2014

Hi M TAMMy - i can feel very drained after washing hair showering ect, as although it may seem like a normal thing, it actually take a lot of energy, moving you arms up high ect, it may be that you are just exhausted and need a bit of time to recover after all that movement.

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MTammy said on 17 July 2014

Hi all, just wondering if anybody else feels worse after they wash their hair? I kno it sounds strange but when ive washed my hair I feel more drained. Please let me kno if anybody else auffers from this symptom who has fibromyalgia.

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STHelensgirl said on 14 July 2014

Hi
I have read fibromyalgia for dummies and C.F.S aka M E for dummies too most of the symptoms are very close , my DR has done a blood test on me for C.F.S. that came back ok .
just wondering if there are more test that my DR can do for me .

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Resident33 said on 03 July 2014

Hi,

I have just started to date a woman with Fibro. We've known each other a while so I knew about it. But now we're starting a relationship I've decided to research it further. The more I read the more it makes me determined to do everything I can to make her life better, even if it's just by a small amount.

I know this isn't a useful post but I just felt the need to post.

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champs6 said on 03 July 2014

I've not read anyone's comments yet.... but what I will say is about time the nhs had updated there information.
now we just need everyone to read it share it and believe it/us... I hate my illness with every fibre of my body but its the depression and fibro fog I find I can't cope on a daily basis..... Doctors need more education with how to support patients and family's with this very dilabating illness.... its just like various other illnesses years ago no-one believed MS but know its very respected which with the right medication people are living normalish lives again that is all anyone wants.
xxx gentle butterfly hugs to fellow sufferers and there family xxx

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User883516 said on 26 June 2014

Hi my husband has fb.he has been on lots of different. Tables. Which. Does. Little. To help. His pain till he asked to try cymbalta they made. Him feel sick about 2hours after he took them for a few days he has been taking. Them for a week. Now. And. Feels a lot better if this can help anyone I hope it can because living. With someone. With fb watching. Them day after day struggling. With the pain is awfully.

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lawz1982 said on 11 June 2014

hi there,
I have suffered for years with lower back pain and subluxations (bulging discs) mainly L5 S1, that is just getting progressivley worse with each flare up, so ide like to say to User869118 below, i know all too well how you feel and what your going through - you are not alone
Along with lower back pain, im always tired, little or no energy, mood swings, my pain threshold isnt what it used to be, and my memory and concentration has good and bad days, so every bout of pain depresses me and drags me down-so reading symptoms of Fibromyalgia, it does make me wonder if its possible.
Its depressing that at 31 im on so many tablets to manage pain (pregablin, Tramadol, Naproxen and paracetamol) yet all they do is take edge off, they never dull completely.
I find it reassuring that i dont seem to be alone by reading theses comments, although every day thats exactly what i feel - alone!

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sumblondegirl said on 27 May 2014

I have very recently been diagnosed with fibromyalgia, after almost 6 years of suffering with no real explination and changing doctors and surgeries i have finally found a doctor who beleives in me, i hve previously been told that it was all my head.... this is certianly not the case! i have also had a doctor practically shout at me when i got upset at a hospital appoinment.
for all the other sufferers out there, keep changing doctors untill you find one that listens to you and a little tip, write down all your symtoms, and take that to the doctors with you, as its easy to forget some of them!
I have found the younger the doctor the more they want to help and the more they care. (however this is just my experience)
Havinf fm is really difficult, and i would deffinatly reccoment readng the THe Spoon Theory by Christine Miserandino
This really helped me and is a good way of explaining things to sceptics or even people who just dont understand.

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Terry999 said on 04 May 2014

Hi All

I was diagnosed with Fibromyalgia last year, I had a feeling it was going to be that, as I had heard all about the symptoms from people on and off for years.
It is a nightmare condition and I actually thought I had MS!! feeing weak, couldn't think properly, felt like I couldn't get words out properly, feeling off balance, aching from everything I did, sometimes panic attacks you name it....Although I have this dreadful Fibro, it still doesn't help anything by knowing you have it, as you feel so alone inside with the continuous number of symptoms that seem to appear, and ones GP just gets fed up with people like myself, as we re not be believed most of the time...At least the Rheumatologist I saw went into great detail with all my medical history and id tests on me, and said without any question that I have Fibromyalgia....at that time I was pleased that I actually had a diagnosis from all the terrible symptoms I was having and still have, but after you get diagnosed there I very little hope of ever getting better as there is no cure.....as most of you will already know. I think Fibromyalgia should be really recognised like MS as the two conditions are very alike, except MS ( so I understand) shows up on your brain, whereas Fibromyalgia can give you a lot of the MS symptoms but it doesn't show marks on your brain when you have a MRI scan..... great life eh:)) rest assure I know what you are all going through.

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User869118 said on 30 April 2014

Hi there I am 21 years old and I have recently come across fibromyalgia by coincidence and haven't intentionally been trying to self-diagnose myself. I currently suffer with lumbar and cervical slipped discs which have got progressively worse for the last 4 years, I had a laminectomy in December last year on my lumbar discs which has unfortunately made little difference. I have had various tests for disease/conditions related to this but there has been no specific cause or accident to my back problems. Over the last few years I have been struggling more and more with other health problems including irritable bowel syndrome, depression, anxiety constant tiredness and feeling lethargic (this in particular has got worse recently and I feel like not a day goes by where I dont feel exhausted and no matter how much I sleep I do not feel refreshed! I also get very little deep sleep abd dream a hell of a lot at night and can recall my dreams when I wake up. My ability to handle pain has also become very low in recent years as well with a mere poke feeling like I am bruised and I regularly bump into things and feel like I am going to be sick from the pain!! I am fully aware that these things may genuinely be separare health problems or directly related to my back problems. I am at a point now where I am just feeling so fed up of it all and feel like peeple treat me like a hypochondriac. It took me nearly. 3 years to even get an mri for my back problems from my gp so they aren't extremely helpful, I mentioned fibromyalgia at my last appointment with very little outcome apart from being prescribed some anti depressants because I got a little emotional when talking about my health. I also take naproxen, methocarbamol and tramadol on a daily basis now which take the edge off but I have to avoid the latter when at work as I find it difficult to function in a customer facing role and driving to and from work as well.

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BHPAUL said on 14 April 2014

my wife been diagnose with fm but wont accept she got it in complete denial that anything wrong ive read letter from nhs she battle through pain even to walk he dog still wont accept it she constantly blames me for everyything to the extreme she now moved out to cope with it on her own i she wont aceppt help from friends family or me or go to the doctors for medicaton my view its driving her nuts she depressed over stressed and still says there nothing wrong and believes she can lead a normal life she suffered from aritherise for 20 years didnt know if anybody else havig same problem

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juliemac1987 said on 11 April 2014

I as diagnosed in 2012 after many tests and scan I have had fibromyalgia since 19. It first started in my shoulders then legs. It is sometimes difficult to move and my legs feel heavy. I struggle sleeping most nights partly because of pain and because of any noises like snoring or the TV next door .Because I'm only 26 when I say I Can't walk that far or carry heavy things people think it's laziness and find it hard to understand because it is not that well known. I am on a variety of painkillers and my GP has been great helping me manage the pain.

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History lover said on 06 April 2014

Hi Guys,

I'm after some advice. I don't know if I have fm, as its rather complicated. I was on 20mg of fluoxtine (prozac) for 7 months for anxiety I regret hole heartidly going on it but what's done is done. I had the general side effects for two weeks and spent the rest of the period fine untill I decided enough was enough I wanted to control my life. My doc told me to switch to liquid dose and taper down to 3 weeks. Within a week of stoping (jan 12 2014) I had a terrible stiff neck, twitches and muscle spasms, pains and sinus problems. Roll onto April my sinus problems are slowly getting better but still have a terible stiff neck with burning sensations, twitches went away but since having a period which was painful, the twitches are back. I've also had pains stretching to my leg but only right side and only since period. I know its difficult because a lot of this stuff can be withdrawl syndrome symptoms (my doc tapered me too quickly). However, I m wandering as a few symptoms sound similar to FM, could this be FM or is ths caused by coming off prozac? Anyone else expereienced this ? I will be going to see a physio this week, as my doc is hopeless (thinks stiff neck is due to stress)

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LadyKayla said on 03 April 2014

I was diagnosed (after decades of always being ill) in 2005 after I handed my GP a 4 page, printed, description of my symptoms and how they affected me on a daily basis. I also listed every test I had been given over the last 10-20 years. He promptly referred me to a rheumatologist for the tender point test (every point tested hurt like hell). I finally got a diagnosis and began the long road of trying and discarding treatments, tweaking medications to alleviate the symptoms.

What doesn't work... Graduated Exercise Therapy - tests in the US and other European countries have shown that people with FMS often get worse with exercise that goes beyond their limits - and our limits can be as low as 2 minutes stretching). CBT - aka telling yourself that you're not really in pain - was developed by US insurance companies as a way of denying payouts to people suffering from FMS and ME. The it's all in your head, really attack.

There is no quick fix. No one pill. Get the GP to check your B12, iron, calcium etc and take supplements as well as prescription drugs. I discovered that taking the recommended dose of painkillers was too much of an up and down pain cycle, so I take half the dose twice as often. I'm never completely without pain, but am rarely crippled by it unless I overdo stuff. The most important thing I have found is to pace myself. Just because I might wake up feeling ok-ish does not mean I should try to catch up on chores etc, that way leads to a Fibro Flare for the following days. Slow and steady wins the race.

Find a local support group. Being able to speak to someone who knows exactly what you mean is fantastic. You're not insane.

Read about the Spoon Theory by Christine Miserando (it's an article on a website called butyoudontlooksick dot com - get your friends and family to read it as well. Telling someone that you've run out of spoons is a great shorthand way to explain how exhausted you are.

Good luck all.

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lesleyipswich said on 30 March 2014

Hi.
36yrs ago i was diagnosed with epilepsy,which is now under control. 8yrs ago i had my son and moe or less straight after i started suffering with problems with my legs, hips, then gradually my arms and neck. I also had a lot of dizziness and headaches. Every time i went to the gp they would fob me off with anything from being a new mum to my epilepsy!

Like most of you i was shoved from pillar to post, even being told that there was nothing wrong with me, it was in my mind.Finally i was sent to see a consultant who deals with pain management....within 30mins he went through all the pain points, listened to what i had to say and told me i had fm (about 4yrs ago now). I was given gabapentin (already on anti depressents) and naproxen for the pain, the naproxen help alot but the gabapentin don't.

As i'm a very active person over the last year or so i've been learning to pace myself, which to be honest i find that the feeling of helpless just as upseting as fm, either cause i'm so tired or in pain espcially when my son wants to play. I find that sitting/laying in a quiet room helps or out in the sun (though if its to hot/cold my legs will hurt). Having a bath does help though not for long. All i can say is that to try different things and hopefully you'll find something that will help. Goodluck everyone.

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janet57 said on 25 March 2014

Hi I actually feel elated that other people have had the same problem as myself. I had my Gael bladder out in 2001 and have had all the typical symptoms of FM since then with no diagnoses just treatments for so many things and I'm just about to go through the trauma of yet another endoscope examination after being brought to tears by yet another specialist who said you just have to live with
I B S, how is it nobody looks at the whole of your symptoms and the makes a diagnosis instead of treatments for each individual thing ?? Does any body out their have mouth problems in relation to F M or is this one thing that should be looked at individually ? Thanks to all you other sufferers I just need to get the doctor to listen then maybe I can stop wasting much needed NHS money on useless medication.

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sarahjacq said on 14 March 2014

Have had cramping of muscles and tendons in knees, hips, shoulders, neck and one elbow to varying degrees for last two and a half years. This combined with pain that ranged from discomfort to severe pain. Always tired and sometimes exhausted to the point that although I would push myself to go to work, when I got home I could not do anything but lie dow. Have self managed for as long as possible, encouraging myself when it got really bad with the thought that it always seemed to improve when the weather did and when I was less stressed, so it would ease up again. Reached the point this week where I could no longer self manage the pain so went to GP. She confirmed what I had suspected for LST 18 months, Fibromyalgia and has prescribed low dose Amitriptyline. Can't believe the difference in the level of pain after just a couple of days! Amazing. So much so that yesterday when I got in from work I was able to do a couple of hours housework and even changed the bed and duvet covers on my own for the first time in over a year.Think I may need to learn to pace myself though as extra stiff today, but no severe pain more like discomfort.
I know soak in a hot bath has helped ease things in the past and sitting/lying with my knees and hips straight (if I spend any length of time with them bent and then try to straighten them they cramp up worse than ever). Has any one got any other tips on managing the condition please?

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eightstars said on 03 March 2014

Hi,

I am 27 and was diagnosed with Fibromyalgia last week. I have had the symptoms for just over 4 years. I am struggling to cope sometimes as the pain just gets to me and other days I can cope with it. Does anyone have any specific things they do to ease the pain.
How do people cope with the fatigue part of it? i drink tea but i hate coffee. I am stuck for ideas.
I am on300mg of Pregablin and anti depressants that i really dont think help.
Any ideas on how to cope would be fab.
Thanks :)

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Emmaclm12 said on 01 March 2014

I got diagnosed with fibromyalgia last October since then I have been fobbed off with doctors at the minute they are saying no pain killers will help so there is no point prescribing any painkillers for me and now have given me gabapentin 300ml which I find useless I'm living in daily pain trying to work and look after 3 children now having a really bad flair up and can hardly move from the pain just wondering what the other people have been through trying to get the doctors to take notice and help as all they seem to want to do is giver antidepressants which I don't think will help

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LostScot said on 28 February 2014

My niece (after a long period of time) has just been recently diagnosed with FM. Extremely fortunate that she has as her employers weren't exactly being sympathetic to her being ill and in pain a lot. Didn't help that she is actually employed by the NHS!!!

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lilaclainey said on 25 February 2014

I have all the symptoms but my blood test revealed I dont have Rheumatoid Arthritis,so can i still have FM pls?

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Beekeeper said on 15 February 2014

I have just been diagnosed with FM after 18 months of pain and fatigue. My GP did bloods twice over 12 months both times negative for Rheumatoid Arthritis. I think he got so fed up with me nagging he referred me to a rheumatologist but the waiting time was too long and I went privately. The rheumatologist was excellent and following a thorough examination diagnosed me with FM. Back in August I self-diagnosed FM but thought that if I was right surely my GP would have diagnosed it himself. I am just glad that I now know what I am dealing with and waiting for results of very specific tests for Rheumatoid arthritis. I may have FM but it hasn't got me. I have been fighting with it for 18 months and won't let it beat me. Here's hoping the blood test is ok. RA is a different kettle of fish.

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hlf1947 said on 11 February 2014

Hi, my symptoms started over 20 years ago. For many years I suffered in silence. When I eventually went to the doctor he had no idea what was wrong. He had investigations into MS done but nothing showed. Then, thank God came the Internet . I entered my symptoms and lo and behold I found fibromyalgia. I took all the details to the dr. and his exact words to me were "the jury is still out on that". I asked to be referred to a Rheumatologist, he tested me and all 18 pain areas proved positive. Knowing what was wrong was a help but I'm still in pain and have all the symptoms mentioned. I live most of the time on will power. Don't give up if your dr doesn't help, always ask for a referral .

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julian1973 said on 11 February 2014

I am like most on here sick and tired of being sick and tired. My symptoms are swelling of my hands and ankles, headaches, feeling tired, dizzy, Stomach problems, burning eyes, anxiety and sometimes depression. I like most have had MRI's Cat scans on my heart, blood tests, urine tests every test there is, but I still get the same symptoms. I hate going to the doctors as I am a number and they think it is me. Well maybe it is but I don't think so.

If anyone can provide any help I would be very very grateful.

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Ninjananna said on 03 December 2013

Polly Doodle, please don't give up hope of a diagnosis for this awful disease. I to, have suffered for a long time with many of the symptoms of f.m. My doctor is fab! She has now referred me (again) to rheumatology after I took a list of my symptoms to her to read through and although she knows about f.m she had to rule out other things first. Don't be fobbed off! Insist on a second opinion, its your right!
There is no cure for f.m, but just a diagnosis is such a relief! At least then you can move forward and know that you are not going mad.(been there, done that!)
Gentle hugs coming your way.

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Polly Doodle said on 02 December 2013

I forgot to mention the days when I am unable to stay awake and the fuzzy like spasms I have throughout my body that can feel like it is full of cement!!

And the days I sit at my desk staring at the screen because I can not think, remember what I'm supposed to be doing. Not to mention the parties I forget to take my children to or the appointments I forget r the things I have promised to do that go straight out of my head....

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Polly Doodle said on 02 December 2013

I have had neck pain, feet pain, hips, buttocks, thighs; tingling and is and needles right arm, electric shocks in left leg; dizzy spells nausea, migraine, heavy & painful periods; long term depression, heightened anxiety and irritable bowel syndrome for years. No one has ever pulled my symptoms together!! Apparently I have menieres disease dizziness and nausea. I take venaflaxine, propropanol and tramadol daily. I'm still in pain.. I've had MRI scans = nothing, blood tests = nothing.... so is this all in my head???

Does anyone think that I may NOT have fibromyalgia??
How do you get a diagnosis?

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Ninjananna said on 30 November 2013

A terrible night and in so much pain today! All I want is to wake up and feel better!! Don't want to keep moaning to family and friends as I think that they are probably getting fed up of me!! I want to clean the windows, hoover and do some washing, all the things that shouldn't be a chore but just the thought of it makes me want to cry.Losing the will to live at the moment, think I'll get back into bed with the bad-boy pain killers! Gentle hugs and love to all my fellow sufferers!!

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Polly Doodle said on 28 November 2013

I believe all my symptoms add up too. I've had all the blood tests under the sun, MRI scans and nothing shows up to give answers... but still I have morning stiffness, constant pains all over, electric shock pains, head aches, IBS, heavy periods, nausea , dizzy spells, chronic tiredness, long term depression etc.

Been to GP this morning doesn't doubt my pain but apparently I am in victim mode... apparently I need the pain killers and to relax so I feel able to take on life again and then the pain will reduce and so will the stiffness and so will the anxiety and depression... vicious circle apparently of self seeking attention :(

I do think Fybromyalgia but dare not suggest it for fear of being laughed out of surgery for making it all up!

In despair...

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Ninjananna said on 28 November 2013

OMG!! I have finally realized that I'm not going mad! I have also been pushed from pillar to post, hospital to hospital, consultants, doctors,MRI,xray and blood tests! I feel now, after reading up on symptoms and all your comments, I have enough ammunition and courage to go back to my Dr (who is amazing) and lay it out!! I have a prolapsed disc and deterioration of the spine, but the list of symptoms I was experiencing all add up to f.m! Thanks guys..Have a peaceful day my friends.

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sawneen said on 23 November 2013

can anyone tell me if artificial sweetners or diet drinks have any effect on fibro myalgia

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heather 1989 said on 08 October 2013

I have been suffering with these sypmtoms for over 3 years now I still haven't been diagnosed as having it. I have been told its pyscological pain, have had x rays,mri scans, physio etc and the pain has become worse and worse. I am at the point now where I am struggling to cope day to day and all I want is the diagnosis and at least better pain managment. Anyone got advise for me?

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Laura EB said on 05 October 2013

And also waywen, my blood test always come back with something wrong, mainly ESR and CRP levels, which imply inflammation in the body, but all my scans have shown no inflammation. Has anyone else got this happening to them or is it just me?

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Laura EB said on 05 October 2013

I have suffered with this illness for about 9 years and I was passed from pillar to post and back again. I was told about 5 years ago by a dr it was all in my head, but I had put up with being told I was fine for so long that I went for a second opinion at a different hospital. Within 1 appointment my newer rheumatology consultant had not only said she suspected fibromyalgia, I had severe IBS and ME and hyper mobility in most of my joints. I had tests to rule out everything else and was immediately put on some pain medication to try and help me function. 2 years on I can now walk for 20 mins solid, where before I couldn't even make it to the kitchen, and I am now back in work with an excellent boss who also has fibromyalgia. It was such a relief to finally be told its not in my head, and have been through physio and hydrotherapy, which helped massively. Only downside is now that I can't take any painkillers but this doesn't usually happen. But even so, I'm still going! Just make sure that people understand what your going through, even if you have to get grumpy, also tends to help if a dr tells them how they can help you or gives you an info booklet/print out.

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waywen said on 01 October 2013

Can't tell you how relieved I am to hear I'm not going crazy, I have fought Dr's for over 4 years to help me and then I see on here so many people with the same problem of trying to get their GP to listen to them.
For four years I have been sent to just about every department I can think of, Gastroentorology, Gynaecology, Neurology, to name just a few. The neurologist was particularly horrible telling me that it was completely normal for everyone to feel so immensely tired all the time like I was, he basically said it was all in my head and what did I want him to do, take me apart doing every test possible and put me back together again to just admit I was depressed and nothing else. He said I'd go to my grave still trying to find out what was wrong with me if I didn't admit it was depression causing all these varied symptoms!
About 6 months ago I realized that all the symptoms I had were that of Fibromyalgia, went through Rheumatology and all they were interested in was ruling out RA and Psoriatic arthritis, so have been discharged from there. Now I have been re-referred to check out Fibromyalgia which they didn't consider at the time.
Symptoms I have , well to name a few are migraines, overwhelming fatigue, very poor sleep, restless legs, weeing all night!, muscle and nerve pain all over, pins and needles bowel changes, recurrent sinisitus, muscle twitching, spasms, could name loads more but every single symptom suggests Fibromyalgia to me.
Dr's are fed up of me, I know they labelled me as a hyphochondriac straight away but I won't give up!
All this time and all the test's I've had the only thing's that have been diagnosed are raised blood viscosity, protein in urine, white blood cells, cysts, lipoma, raised blood pressure, folic acid deficiency, migraines but every time I go to see my GP he just treats what I go to see him about during that appointment, never look at the picture 'as a whole'.Waiting to be re-referred and hope for some help at long last!

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Lauraalicexo said on 24 September 2013

Hi I'm 20 year old female I've been suffering from fibromyalgia for a while now it's proper stressful, I can hardly sleep at night when I do eventually fall asleep i wake up to the most extreme pain, where I can't move my entire body. These are not the only symptoms extreme tiredness to the point where I'm getting bags and dark circles under my eyes! Can't concentrate, very forgetful, have problems with stomach where I need the loo every 10 minutes plus get extreme pain in stomach it feels like someone stabbing me, sensitive to light that makes me have extreme migraines that never seem to go ever! Can't walk far either due to pain, swollen feet , hair loss and many more things the list is endless!. Don't know what to do anymore my doctor is referring me to a pain clinic hopefully they will help! Does any one know any good medication that could help me?.

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TiredChris said on 16 September 2013

I definately have 'Fibro-Fog'..... Ugh !! It makes me feel as if I've Just been in a car smash !!
All I've come on here today,is for a List of Medications for 'Fibro-Fog' that my GP can proscribe for me; And I find it Impossible to find & compile such a list...... :(
- Can anybody Help me,please ?

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appaloosa said on 15 September 2013

Hi I have been suffering with pain all through my body, particularly my hips, knees, arms and feet for years. Had an mri which showed 4 prolapsed discs but Dr didn't think that was causing all the pain. I have difficulty walking, have ibs, and permanent running nose and blocked sinuses, difficulty concentrating and am so tired that i can fall asleep in an armchair during the day but find sleeping at night difficult - am constantly waking up and clock watching til I drop off again. I used to love going to the gym but now find i am totally exhausted, sweat profusely and cannot complete my workout. I also have a horse that I now struggle to look after, I don't have the body strength to ride and stable chores leave me exhausted but I find being with my horse such a stress buster and don't want to give him up.
I have been seeing a locum gp since May and have had so many tests - thyroid, diabetes, arthritis, RA etc and everything comes back normal that i am really feeling down. GP has thrown fibro into the pot along with ME and Polymyalgia but am still no closer to a diagnosis. Help.

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biswa said on 27 July 2013

symptoms : headache, body muscle stiffness, immense pain through body, high level of anxiety, forgetfulness, loss of appetite and list of taste in food, sleeplessness, loss of concentration, irritation, restlessness, tiredness.

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biswa said on 27 July 2013

HI, I have been suffering from the similar symptoms of FM since 5 yrs.It started at at age of 24 when i was in a rigorous study environment. I used to go to gym a lot and all of a sudden I left gym and started studding full time for a better carrier. Initially when it occurred I didn't had a moment to give it some value and tough i used to have a strenuous exercise habit I ignored it. gradually It affected my study time. Sever headache, enormous heat despoliation from my body, body pain through,allergy to certain food, indigestion, tiredness. Eventually it lead to complete forgetfulness and loss of confidence as I was not able to progress in my carrier at the same passe which I started. I dried up sexually and had no feelings what so ever which gradually bothered me. My inability to work or study became my weakness mentally as well as socially. I gradually started to find excuses for my inability cuz I have never felt or seen such kind of problem before nor I could find any solution with medicines later. Gradually I spent lot of time lying in bed. And out of frustration I searched means of recreation like sports but it worsened the situation. Now situation is as such that i have not yet recovered and within this period have been socially disconnected. I have been laughed at, made fun of , criticized of my abnormal behavior due to frustration. In other word I am spoiled both physically and mentally and this disease has lead to depression. I loose my temper frequently and have no patience at all. I have been fighting with this problem and searching means to be engaged professionally but now I have lost my job, have no strength or mental stability to peruse my carrier or study full time again.pain in body has reduced but has increased in my soul. I don't know what to do. How to do. Whom to talk. How to get out of this. I am not sure if i will fall into this again after i recover if at all. But still I have wish to live and continue what i left back.

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Markus001 said on 26 June 2013

This is an interesting article about Fibro and maybe the reason we get Fibro.
Check it out: http://guardianlv.com/2013/06/fibromyalgia-mystery-finally-solved/

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Sanaa Hafez said on 14 June 2013

I am suffering from most of the above symptoms but there is still no diagnose for me . Dr. still do not know what is wrong with me .
I am a nutritionist I managed to improve my overall health condition By using good fish oil high in EPA contents for stiffness and joints pain I stopped all the grain in my food and I follow the Paleo diet and I use coconut oil for cookings it improves my gut condition and stopped the pain in the muscle and the water retention and the sinuses and the earaches improved a lot as well . the only thing is I can not improve is the heart palpation and the pins and needles and the electric shock like , in my feet and hands , tiredness , lack of concentration and not sleeping well ..

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Markus001 said on 12 June 2013

I am a 39 year old male. Fibro has been in my life for the past 8 years, but only recently diagnosed after many visits to GP, scans, tests etc.
My GP and Rheumotoligist are very understanding.

I have tried pregabalin, amitryptilyn and other drugs to no avail.
The only drug I find works is co-codamol and diazapam, which my doctor will not prescribe.

My symtoms include massive joint pain, burning, pressure soreness, extreme and uncontrolable tiredness, lethargy, dperession, IBS, itching, dry eyes, numbness, pins and needles, palpitations, neck ache, jaw ache, tightness throughout my whole body, migrane to name a few.

I am just about to have Hydrotherapy treatment, which will be an hour per day. twice a week over three weeks.

I find exercise very hard, tiring and painful.

As it is a syndrome that does not show physical signs then it is hard to explain.

i do have a very understanding partner but get very fed up of listening to myself whine about pain, stiffness etc. But I count myself lucky that i have my partner.

Fibromyalgia is a crippling, painful and upsetting syndrome that I seem to have 'just developed'. they say that a trauma can trigger, but I am not sure I have had a trauma?
I hold a full time job, which at times is so difficult, but needs must. Work are understanding to a point, but my embarrassment is whay holds me back from discussing. Are you the same?
I respect all your comments and belive by taking about it, we will be providing an insight for the NHS and medical reserch. So please guys, keep up the chat. lets try to make a difference.

Do you use any other forums?

Thank you for sharing and keep up the fight eh!

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Knitter natter said on 21 May 2013

I have had fm for over 20 years, the biggest problem i have found is that GP 's do not believing this condition is real. This condition is not life threatening but one of extreme endurance of chronic pain and fatigue. especially when your GP says 'oh well it is a bit of a grey area' . The only grey area is that GP's do not know enough about or care enough to research the latest information available.
I call on GP practices to nominate a caring GP to specialise in this area so that we can have the best possible up to date information and medical care available.

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lauraguai said on 16 May 2013

Reading everyone's experiences of fibromyalgia here is heartbreaking.

I am a 25 year old female and developed full blown fibromyalgia age 23 after severe emotional trauma. I spent a year and a half undiagnosed desperately running from GP to GP and many A and E visits. My symptoms are: burning skin pain, jaw pain, fatigue, migraines etc. I have had to give up so much.

Good news - I have found something that actually works in helping fibromyalgia - The Guaifenesin Protocol. It was developed by Dr St Amand in California and many many people can now live their lives fibro free. I have been on it since march of this year and things are getting better for me. Less pain, more energy. Look for 'What your doctor may not tell you about fibromyalgia'. This book will explain all our suffering.

Laura xxx

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sumots said on 16 April 2013

this message is for DIANA17. dry eys is one of the symptoms. you have to go to the eye clinic. you need eye drops. you will not manage without it. i have had this problem with my eyes for 7 months and had to sort it out myself. my doctor could'nt! after the doctor and optition i ended up at my local hospital walk in eye clinic. the opthamologist there was so helpful. i am now being investigated for all the symptoms that i have. which is like a repeat of everyone on this forum.

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Fmdee said on 12 April 2013

I was diagnosed with Fibromyalgia some time ago and have been lucky to have a very understanding Doctor and fantastic Consultant.

My symptoms include: chronic fatigue, muscle pains, migraines, myofascial pain, neck pain, blurred vision, memory loss, joint pain, swollen hands and feet, IBS, overactive bladder, frequent swollen glands, sore throat and ear ache, pins and needles, sleep disruption, anxiety and stress, palpitations, back pain, pressure point tenderness, hair loss, carpol tunnel syndrome and hot flushes. Amongst other things!

I am unable to walk for more than 20 minutes and have just bought a wheel chair which I’m hoping will be a temporary solution.

I rely on meditation, relaxing music and have studied Jon Kabat-Zinn’s ‘Mindfulness’ course. All of which help to alleviate the stress and anxiety which are definite triggers for a flare up.

I take Amitriptyline every night to help me sleep, Co-codomol, Naproxen and Imigran when required. I also take multi vitamins and Black Cohosh for the hot flushes.

For me it was important to understand the illness which I did through research and websites. I learnt my limitations through and also learnt that I cannot fight this illness (which used to be my usual reaction to difficult situations) yet neither will I give in to it. I have accepted that things are just ‘different’ and this will pass! The symptoms do pass, albeit it temporarily, symptoms come and go, sometimes one symptom is more troublesome and then there is a shift and another of the symptoms takes priority.

I consider myself to be lucky. Yes lucky! I am still able to work full time. And yes I have a very successful career. I also have been blessed with a wonderfully supportive and understanding family.

I wish you all the best of luck; keep smiling :-)

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Firstaidgirl said on 03 April 2013

Many conditions like this run in families because they all share a common allergy to something. I was a very sickly child - Psoriasis, eczema & extreme tiredness. Back then in the 60's/70's my main diet was milk, bread and processed foods. For years I've suffered from IBS (severe constipation and heartburn), and now severe muscle and joint pain, and it's taken all this time to realise if I keep away from white bread and starchy foods my bowels work perfectly normally and no heartburn. If these foods are affecting my bowels then what else are they doing to my body??????? Could the Firbromyalgia be a symptom of the poision I've been eating all these years? I've noticed when I've been poorly with other things and couldn't eat my other symptoms have subsided quite a lot.

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diana17 said on 30 March 2013

I was diagnosed with FM about 8 months ago after suddenly developing symptoms a year ago. I suffer from tingling and pins&needles down my legs and feet and also in my arms and hands. I have a lot of tension in my body. I have been taking cipralex to ease my anxiety and I feel it is working. It has not really reduced my other symptoms though. The main pain I feel is mainly up and down my legs and the top of my arms. The worst is first thing when I wake up. My body feels very heavy and achey. The other very debilitating symptom is pain in my head and my eye(s). I have read through a lot of the stories on this site as well as others and don't find this mentioned. Does anyone else suffer from eye pain? It is so bad I want to pull my eyes out : (

I also want to know if anyone els eon here is taking cipralex. Do you find it is helping Do you have side-effects? I think my weight gain recently is because of it.

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QRA1 said on 17 February 2013

I had never heard of Fibromyalgia until today by chance, but it would explain away a lot of what I have been going through. For about 6/7 years now I have had constant pain down the right side of my body including symtpoms like burning sensations, numbness, heaviness, stiffness, the lot. It started in my shoulder and radiated down to my foot. After a visit to the Doctor, physiotherapist, 2 MRI scans, a Nerve conduction study, being on medication (incl. pregablin) and accupunture, I was finally discharged being told 'sorry we don't know what it is'. The pain is still there and has also moved to other areas of my body now. I am also an IBS sufferer and don't sleep as well as I did years ago. After doing a little bit of research today and reading possibe causes I can also relate entirely to them as well, e.g. stress and anxiety. I struggle to excercise; something simple like riding a bike feels like I am trying to push a lead wheel around and if I am walking anywhere, sometimes it feels like my leg is being twisted off!. I have been back to the Doctors a few times after my discharge from the hospital but the last Doctor asked me 'what else would I lke them to do?!' The whole thing is disheartening and being in constant pain does get me down. Maybe it isn't Fibromyalgia I am experiencing but from what I have read and other people's testamonies it sounds an awful lot like it and something that I shall be taking back to my Doctor a.s.a.p.

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User235647 said on 03 February 2013

i have been having constant pain for over 20 years. Firstly they thought i had a stroke then i had arthritus and with my leg they said i'd by lateral knee cap and the having 3 operations. The referred me to a pain clinic who surjested that i had a spinal stimmulator fitted with 2 week i delevoped a blood clot and had to have it removed. Since them i have been given various drug from mst, gabapentin, pregablin, zooamorph, and now i'm taking a coodenine mix. My own g.p mentioned something about fibromyalia and i mentioned it to the pain clinic and the stamp it out straight away but the friday week my gp mention it again. But they now are sending me to see a rhemologyist so god knows what i wrong with apart from i'm in agony all the time.

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vk09aas said on 25 January 2013

Get your vitamin d levels and vitamin b12 levels checked.....If you have fibromylagia lack of vitamin D in the body can cause muscle pain and joint pain

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DahyaMistry said on 20 January 2013

I had what I thought was fibro recently. I had very tender and very sore points on the same parts of my limbs, eg back of my forearms, back of my upper arms, top of my buttocks, my lower back, and my calves. All at the same places on both sides of my body. They were so sore, that when massaged on those points, I used to feel like crying.

I have known for years that I am 'hyper sensitive' to chemicals, and realised a couples of years ago that all the above described pain was from using hand/body creams, or from my wife using them at night. I don't get these pains anymore thankfully, because I stopped using any creams.

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oldhoofer said on 15 January 2013

I have just recently been diagnosed with Fybromyalgia after suffering severe pain throughout my body for too long! These started when I lost a baby and the hormonal changes were severe. But they settled down and the pain disappeared only to surface again after catching swine flu four years ago. I know the Drs say you can't have it more than once but mine came back the next year and I ended up having pneumonia - not desperately ill but sufficient to be a worry. I have found that a good healthy diet and exercise when possible does help but the major breakthrough came with deep muscle massage and acupuncture. Stress brings the whole lot back so relaxation is a must. I have a very good friend who helps with alternative medication ( He is fully qualified - an absolute must!)
Try not to worry and relax as much as possible especially in this awful cold! I hope this will help someone out there because the pain can be unbearable.

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Anonymous said on 11 January 2013

Hi All

After years of wondering what all these dreadful symptoms were, aching painfull feet hands, arms, IBS chest pains, shoulders, tiredness, I have now been diagnosed with fibromyalgia...not that I really wanted it to be, but I am glad that I now know what it is. the part of it that I find hardto cope with the most is probably the feeling of tingling on one side of my face, puffy fingers and feeling like my left foot is full of water with a buzzy feeling....The trouble is now that I know what it is, what do I do now to try and get rid or ease all of the symptoms?? What can doctors do apart from giving me pills? Surely there must be something.... Anyone had any help after being diagnosed?

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james1905 said on 03 January 2013

A couple of years ago, completely out of the blue, I had what was believed to be a viral infection which left me temporarily barely able to walk/stand up, and also led to loss of grip in my hands. It only lasted for around 7 days, and then I made a complete recovery. I had further health issues very shortly after this, which I believe were unrelated (with my lungs). Around 18 months ago I noticed that I felt stiff more and more frequently - not to the extent that I had suffered with a viral infection - but certainly uncomfortable. I now feel stiff after any inactivity lasting more than a few minutes (particularly noticeable at work as I sit at a desk all day), and I frequently have spasms in my muscles. I have also noticed that my short-term memory has worsened. I have started looking for things that may/may not explain the problems I am having, such as Fibromyalgia, Auto-immune Myositis, MS etc etc. I already suffer from GORD, and have frequent problems withs chest pain. Reading some of the other comments I suspect my symptoms are relatively mild by comparison, however it appears to be very gradually worsening. Does this sound like FM? Have reached a point where I think I am going to have to go to my GP - which I have been loathe to do (mainly out of fear).

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pjmain said on 01 January 2013

Hi
I am on a waiting list to see rheumatology at my local hospital, 26 week waiting list, been put forward as urgent by my physio, but doctor has marked me for routine.....I have self diagnosed myself with firbomyalgia, and I have suffered with it for about 4 years....I feel lost and no idea what to do as to look at me there is nothing wrong, as its all on the inside....I am hoping to get an appointment with my doc tomorrow, as I am on gabepentin and read a report that this has no effect on FM, they haver me on naproxen and co-cordamol and citalapram......I am getting worse not better and need help....I am debating on whether to take to a private consultaion and maybe get on their nhs list......Anyone with any help please let me know....

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Daisypetal63 said on 25 November 2012

Hi I've had FM "diagnosed" since 1998- previously I was dismissed by a "specialist" as it being all in my mind having had Sarcoidosis and never recovering to feeling any better. I'm lucky that my employer lets me work part time and is mindful of my illness. My eldest son also suffers with it but a lot worse than myself and as he lives in London gets a lot different and better treatment than myself. He has been told its heredity so I worry my youngest son will get it as he does show some tendencies - feeling cold as pain and slight IBS. My quandary is do I tell him not to ever overdo it to prevent getting it full blown? My eldest son started having problems when he was 16 with pain and stifness and only after working on a tour in in America while at uni and working long and erratic hours while doing his degree did he get it full blown. He and myself suffer the jitter fits when we've done too much!

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Anonymous said on 17 November 2012

Hi Buddyann

Thanks for your reply / reaction to what I mentioned previously.....my current GP will not send me to a specialist to find out why I am having all this....I thought they were going to send me, but now they aren't... so I am planning on going to a hospital in London that I am going to have to pay private so that I can be told one way or the other.... I have been sent all the information from the Fibro help lines etc, but most of it says that it is not a *mans* disease!! but then if you look at the American doctors views and reports it says that men get it worse!! Obviously I don't want to be ill at all, I just want to know why I have this dreadful condition, and so, if it is not Fibro... then what is it? It's very worrying.. I just hope I get to the bottom of it very soon.

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buddyann said on 13 November 2012

In reply to Queen2, I just wanted to say that it sounds like you definitely have this condition. The feeling you describe of being thrown off a building and impact pain, well I have that sensation regularly, I wake up in agony and the pain goes through my body like a scanner. There is nothing I can do except wait for it to pass. At the moment im getting about 4 hours sleep a night. The soles of my feet are constantly burning and the other symptoms are getting worse. I just wanted to tell you that I for one know that waking up pain you are having. It is like waking up from a terrible nightmare and trauma going through you. Your not alone,

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Anonymous said on 08 November 2012

Hi all... I have been having symptons of tiredness, my fingers keep going puffy, aches in the legs, keep going dizzy when I am in somewhere with bright lights, and also when I am driving if it is dull cloudy day, so I don't drive on those days.. I keep waking up with numb fingers and during the day it feels like I have water and puffyness in my foot..... Huge long story short, I am feel 100% sure that I have this condition, because I have been tested by the neuro depts in hospitals, had 4 years of blood tests which has shown inflamtion sometimes and other times not.. I have had heart tests done and had to go for 6 weeks for several tests but my heart is all ok even though I kept getting pains in my chest and upper back, I have had my eyes tested 4 times, Xrays, MRI scans you name it and yet still I have what most of the other people here are saying. Sometimes I feel like I can't grip and yet I can if you know what I mean, and also it feels like as though I have hot liquid running through my arms legs and feet.
The worst thing I have ever had which I think is related to this condition was.. I woke up at 4.45am back in May of this year and it felt ike as though I had been thrown off of a high building and it was like an impact dreadful pain going all over me.. it was just dreadful, I really thought I was dying, and yet when I got to hospital it just went,it was like a mega flair up all over me, something that I would never ever want to go through again... Everyone keeps telling me who has this condition that I just must have it otherwise I wouldn't keep on having all these problems constantly. I am going to see a rheumatologist specialist later on this month, so I just hope that this time he can find out what it wrong, but I am expecting that he will tell me that I do have this condition as it just can not be anything else.
Anyone else had the things that I have mentioned?

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buddyann said on 23 October 2012

My update.
I had rheumotology tests at the hospital and that has been ruled out. The doctor confirmed Fybro and he was really helpful and understood everything I told him. I feel its definitely got worse this year, before, the pains were only at night, now its all day too. I feel sick and get my words mixed up a lot, forget what i was saying, there are just so many symptoms, but because on the outside I look alright, its hard for people to believe whats going on inside! This really is a horrible condition to live with. The doctor gave me amitriptyline 10g to take in the evening so that i can get a nights sleep without pain, but it doesnt work that well. Im up and down all night with pins and needles and restless leg and sciatic pains all over. I keep wondering what is happening to me, I cant believe there is no cure for this.

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amena said on 21 October 2012

I have been diagnosed fibromyalgia, i understand what other people are going through as it is a very painful process. Mine has now spread through to different parts of my body, it is difficult sometimes to walk and do tasks.

I also get the dizziness and loss of balance and fall. I get to the point and understand people pain. I have got to the point im in that much pain and reduced to tears. it is nice to know I am not alone and other people suffer and its not all in my head.

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Daniel Chantry said on 25 September 2012

Hi im Daniel,

15 years ago i started to ache and stiffness to my neck, back and arms. and bowls were not regulate correctly and go days without food then binge, bowls that would open 3 days later..eating always made me chronically tired.
I went to numerous specialist to only be told they couldnt do anything more for me.
So my wife continued to push me and pushed me to continue to work. I worked all these years uptil recently but was going threw jobs like a knife goes threw butter but i continued anyway; people always making me feel like i dont fit in as i got so irritable and snapped alot with peoples sloppiness and willing not to work! all this bothered me so much as i knew i had an illiness and if i could work hard then so could everyone else. Last year i started to collapse with muscle spasms when i laughed and i also could not maintain a regular heart beat or keep a constant temperate. on my own i tried cog and even exercise but it was always a struggle but i never let on and got on with it even tho people use to think i was a wimp.
I went back to the doctors and they asked me to see someone for a second opinion which they told me i had Fibromyalgia and i had it for all those years. I call the illiness the catch 22 illiness as when i am happy i get spasms and when im stressed i get the most common symptoms and when i feel just OK with the drugs im now on it masks the common problems until i try to play with my kids and then the joint nd tendons and stiffness returns.
We have 4 kids and also my granddad who is 87 lives with us, has done for 8 years now, im his carer and i have to do everything for him as he is unable to do anything for himself...i do my best with everyone but still now i feel the support i get is futile and communities treat you like those people who sponge benefits even tho i dont and never have done as ive always worked and struggled on tgo support the people around me. I dont drink and i eat as healthy as the money we have allows it

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theirpatient said on 27 August 2012

they respond well to being listened to and having antidepressants and therapy where they get a lot of attention. how do you go about getting a diagnosis through clinical facts?

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rosexelex said on 21 August 2012

Can I ask everyone who has FM to try eating some Marmite and garlic and take a multivit/min tablet to see if there is a problem with a lack of nutrients?

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buddyann said on 15 August 2012

I have just been diagnosed with Fibromyagia aftter 10 years of unexplained night pain. I occasionally wake up in agony, its like intense sunburn ,but I had no idea why this was happening, and thought it was just due to stress coming out of my body. I couldnt even sit on the toilet! For about a year Ive been having severe exhaustion/nausea on and off, when I dont feel the strength to even get up the stairs. I decided to do some research and realised so many symptons of Fibro were what I was getting, I knew it wasnt normal to feel like this, my teeth are always painful, i dont like bright lights, or smells annoy me, The tiredness is the worst, I feel guilty keep telling my husband Im worn out when Im lucky enough not to have to go to work. My doctor told me she is sure its Fibro and ive got to have blood tests next week. Im just glad that I know what it is now and i think it was a build up of my past very stressful life that caused it. Its all coming out now, , My doctor at least recognises this condiion, but its hard to convince others that you feel ill when one day your fine then the next feel 90years old!

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sazelle said on 15 August 2012

I have been suffering from unexplained pain all over my body since 2005, and in June 2011 I was told I had FM as well as hypermobility and hypothyroidism. I was prescribed pain killer’s which made it impossible to live a normal life so I have been "putting Up with it" I can no longer take anti inflamtories as they are affecting my stomach and have a super intolerance to anything containing codeine, I am constantly tired I feel like I have just woke up all day and most days it feels like an effort to even comb my hair my short term memory is non-existent, I am moody, tearful and irritable all the time. I would love to do the exercise to help with my pain but the after affects are horrendous as I work in a call centre I am sat all day and I travel one hour each way to get here I don’t know what I can do anymore other than go on long term sick and take a pay cut ?

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tru64 said on 11 August 2012

i believe i have FM but my doctor wont send me for tests..hes done a rheumatoid blood test but came back normal,i get swelling ankles,bad headaches cramps in my legs,pain in ears itchy skin dermatoligist given me lotions,they dont help,i also get joint pain and hands and wrist and sometimes cant wash my pots....need a diagnosis this been goin on fr 3 years now x

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salvageman said on 01 August 2012

Hi, I am a 54yr old male & have been suffering with lower back pain since 2004 & had to finish work through it, since 2009 I started getting pain in most parts but just lately I am getting terrible pain in my shoulders & neck, the pain is going down my arms with tingling in my right hand & fingers causing numbness at times! my left arm wont straighten up & a friend said it is tennis elbow, I have been & had physiotherapy & hydrotherapy but it as not helped much, my doctor is now sending me to a muscoloskeletal specialist, at times he treats me like an hypochondriac & it is getting me down as I was more happier when I worked! it was my daughter that pointed this out only today (1/8/12) & it looks like this is my problem due to my symptoms, I just need to see someone that understands the problem now.

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Sallyinthealley said on 23 June 2012

Hi mac100 yes, 'Fibro fog' as its known can create havoc in your life! Can't remember what you were going to say, what you walked into the room for, can't string a sentence together? All sound familiar? Don't worry it will pass. Often your head feels full of cotton wool or can physically feel sore in places. It's all part of the condition.i find it useful to 'retrace' my steps and thoughts.i usually get back to the right place eventually! One thing is important though. On days you feel good, don't go mad!! Pace yourself for the coming days, as steady work, exercise, etc will keep those pain spikes at bay,and allow you more control over your life. Good luck on your journey !

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maco100 said on 30 April 2012

hi i am new to this. has any body thought they had dementia due to the brain fog. thanks maco100

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walton_paul said on 23 April 2012

Does anyone know if there is any research in the UK regarding Fibro being an Auto immune disease?
'Autoimmune' is a name frequently given to diseases characterized by the presence of Th1 inflammation. Patients are still often told there is no known cure, while they are given palliative medications intended to reduce symptoms, without changing the outcome of the disease. Scientists have now identified a common intra-phagocytic bacterial pathogenesis (cause) for much chronic disease, including those thought to be 'autoimmune', and other idiopathic (unknown-cause) conditions including Chronic Fatigue Syndrome, Myalgic Encephalomyelitis, (CFS/ME), Fibromyalgia, Sarcoidosis and Post-Treatment Lyme Disease Syndrome (PTLDS).
From http://autoimmunityresearch.org/

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walton_paul said on 18 April 2012

morefreedom you said you used a FMS clinic in London, which one? my daughter is 22 and suffering quite badly from the general symptoms and now her hands and feet have started to crack and weep so we are getting desperate especially as she is in her second year at Uni and is missing quite a lot

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sunhillow said on 20 March 2012

My Daughter has got the same symptoms as most of you all on these pages. She too was a regular visitor to the Doctors, and got the usual 'take the painkillers and come back and see me if things dont improve'. Things did'nt get better, they got considerably worse, chronic pain all over her body, no sleep,you name it. She was lucky to find a Prof.Graham who diagnosed her with Hyper Mobility Syndrome/ Ehlers Danos Syndrome. He then referred her to a pain management team called COPE. It was during this time that she found out that Fibromyalgia is known as ''the dustbin''. The reason being that if you have the symptoms most of you describe, then it's Fibromyalgia, and you are treated for it. This is because most GPs dont know about HMS/EDS. No doubt some of you have Fibromyalgia, but I would bet my last £1 that a lot of you have HMS, and probably/possibly with EDS. A recent example being, my Daughter went to the hospital with severe chest pains. She told them she had HMS/EDS, they did'nt know what it was. Mad Eh? This is generally a 3rd generation condition. My Son, Nephew, and Niece have HMS, but thankfully not with EDS,You cannot go through life being treated for the wrong condition, taking drugs that turn you into a zombie. You must get it sorted. Ignore what I say if you want, but if you want help to get back to a decent livable existence, then please get in touch with the HMSA asap. They will point you in the right direction, and hopefully get you the help you crave. Please do it, if your loved ones love you as much as I do my daughter, then trust me, they too are in deep emotional pain, unable to help, frustrated, and probably angry too. This condition is incurable, but it can be greatly improved with the right help. Take Care Eh? XX

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lovelylea said on 18 February 2012

Hi

I would say something to every doctor i see as not all know about this illness, or play stupid to it. I was diagonosed in 2011 year after my accident on tram.

I had every test going from blood to ct scan to mri scans to xrays got fed up with it all, so when doctor finally told me i have F.M. i was so full of joy knowing i was going mad. I know dont work because i am so ill, tired, in pain. Not only do i have to deal with F.M in 1997 i was diagnosed with M.E and with all that was going off in my life i now can not even get dressed, do my hair, make up, toileting needs with out my husband and my in laws.

Things are not getting any easier know matter what treatment i try. the medication only takes the edge of the pain, and sleep gone from not sleeping with pain to the M.E making me sleep for hours some times days go by and i have not waken up for a hour at a time.


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happyhibee said on 15 February 2012

I wonder if anyone can help? I have had fibromyalgia symptoms for just over 2 years. My GP dismisses my symptoms - doesn't offer any alternative possible explanation/diagnosis. I saw a rheumatologist who ruled out arthritis. My symptoms have gotten so bad that I have to take "pro plus" every day just to get through my working day along with numerous painkillers (prescribed for sciatica). I'm becoming increasinlg ill, tired and in pain. I've just moved to a new area. Should I mention it to my new GP or will I be dismissed as I have been for nearly 2 years?? Your comments are appreciated guys. Thank you.

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5619sue said on 11 February 2012

I have just been diagnosed with Fybromyalgia after 2yrs of blood tests, xrays and doctors telling me I have Rhumatoid Arthitis, I was sick of telling them it wasn't my joints that gave me pain is was muscle pain from head to my feet, and all the other side effects of the condition, and all I got when the specialist told me was a leaflet and thank you very much, and now I finally know what's wrong with me it terrifies me to death, I live on my own, have a full time job as a Support Worker for a Brain Injury male, which needs lots of lifting and pushing of a wheelchair. It worries me that it may get worse because I can not afford to give up work. I can't think of having to change my career, Anyway I had a bluddy good cry tonight thinking of what the future will hold. I feel that now that I have no control over my life. I have been so used to helping other people with disability, I can't imagine doing nothing else. Can people get help as in benefits for this Desease?

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mumtojemmaandkaty said on 09 February 2012

Just a quick question, I have been diagnosed with Myalgia, and from reading some of the posts on here my symptoms are similar to Fibromyalgia, are these one and the same?

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User108760 said on 25 January 2012

I've had a fibromyaglia for probably at least 14 years - which has steady got worse. I have done a lot of research over the last 12 years into what was causing this and the fatigue which goes with it.

No. 1 is thyroid issues - usually hypothyroidism. 90% of people with fibromyalgia have a thyroid problem - quote Dr John Lowe - google it! To find out more - read Stop the Thyroid Madness by Janie Bowthorpe or join the Facebook group of the same name.

No. 2 The stress and fear of the pain makes things worse as it increases the adrenaline cycle and prolongs the symptoms. For this you need to address and eliminate all fears relating to this illness - using the Gupta Programme - google it!

No. 3 You need to have a healthy diet - keep a food / symptom diary - note all the foods you eat which seem to make your symptoms worse, and eliminate them. For me sugar and wheat is a no-go. You may be allergic to certain foods and to eliminate them - have the NAET treatment (google it).

To get better - you need to address all of these things. It can be hard work, but worth it. Good luck. P.S I am now almost fibromyaglia free

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Mashhk said on 19 January 2012

Pls watch an in-depth TV interview of Simran Gill...fibromyalgia sufferer and Miss Asian Model 2011:

www.youtube.com/watch?v=trR2kRb2QrQ

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noram said on 08 January 2012

lolalou -
I am very interested in the patch you are using on your back. I suffer with similar symptoms and would love to try this patch. Can you let me have the name of it, and where you purchased it from.

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ricnardo said on 25 December 2011

i am currently in a right state i have put weight on, my diabestes isnt controlled, i have severe pains in most joints, alot of time, extremely tired an very weak, everything is such an effort, also possibly borderline autistic and unable to react in certain circumstances
cant list everything now have a good christmas

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User626320 said on 20 December 2011

@normality and anyone that has had all the tests & they came back 'normal' or feel they have not had a diagnosis or are not happy with that diagnosis. I have lived for many years with 'unexplained pains' and other symptoms. There is a condition known as Tension Myoneural Syndrome (TMS). I came across this info and it has already helped me. It can do you no harm & may be worth a try.... Two links for you to see for yourself:
http://www.youtube.com/watch?v=7GyHQn7ZTQY
http://www.unlearnyourpain.com/index.php?How%20do%20you%20know%20if%20you%20have%20MBS/TMS?

I hope this helps.

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Noggin bob said on 18 December 2011

Stanner01
I had the same problem with my feet for a long time. I solved it by moving and stretching my feet before I got out of bed or up from sitting. I also have worn very supportive shoes since and my feet are much better. I continuously wear catapillar work trainers which give great support. I would not now wear anything else.
As for D ribose, you can get it from amazon or eBay. I have been using it for a couple of months and it really does help with the fatigue.

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Noggin bob said on 18 December 2011

D ribose can be bought from amazon or eBay. I use the deluxe nutrition brand. It may seem quite expensive, but it lasts a long time.

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normality said on 16 December 2011

hi there someone please help i think im going insane back in july i started having 3 or 4 days with my neck stuck to my shoulder n severe pain it would go away n return the following week until mid oct wen i woke suddenly at 4am screaming with the pain n my head was glued i was in agony its my neck sever spasms n cant speak with pain at times shoulders right down to the bottom of my shoulder blades half my arm n base of my back( i had severe pelvic displacement n was on crutches from 4 mnth preg till he was 4 months old hes now 16 months but i still have a lot of the pain ) daily the pain got worse n the doc kept upping meds them a few days later i got addmitted into hospital for morphine the mri came bk clear as did xrays on my shoulder i was thrown out hospital as ortho said it wasnt bone related 4 days later i visited my gp next day and was put on mprphine 3-4 hourly 5mg diaz diclofenac 30/500 every 4 hours n still in a lot of pain she tried to get me a nursery for my baby as i havent been able to lift him for 3 months however i couldnt lift him to get him there so i foned social work which was hardest thing ive ever had to do as i knew i couldnt care for him as i should b after weeks fighting i get an escourt to take him to nursery for 2.5 hours a day i also have a 5 year old who a neighbour takes to school for me ive bn going to fisio n getting accupuncture 5 times which i do get some relief from temp till i go bk out in the cold last week i had a friend stay all week let me take my meds as prescribed and rest n i got really good movement then the following week i couldnt get the movement bk she was furious n told me i was making myself worse a few weeks ago she asked me if i wanted to get btr because i told her i wasnt taking all my morphine as pres but ive 2 small children wat do i do. now she thinks im at it n said its all in my head then phoned my gp who was really helpful has totally changed her tune n attitude took me off morphine just as i was

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kwolfer said on 09 December 2011

Hi, I wanted to comment to the person who asked back in November, 2011 when she looked for D-riband. It is called D-Ribose. It worked some for me. I too have FMS and CFS. Found out I also had hypothyroidism and my hormones were out of wack. I was vitamin B deficient as well. To make a long story short, the only way I found relief in the 24 years I have suffered this nasty disease is this: I use the Duragesic patch for pain. I am on Cymbalta and Welbutrin XR. I also take supplements from a site called Gematria, called HeartGems, a wonderful supplement for all sorts of disorders. Now, I have relief. And I have taken all sorts of medicines, therapies, supplements etc. I hope this helps some of you. Oh, take a supplement to increase your mitochondrial energies is important as well. God bless all of you and I wish you luck.

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dendroz said on 08 December 2011

I have had Graves disease for 9 years and had a total thyroidectomy, but just before I had my throid removed started getting unbearable pain in what feels like my joints.The pain would migrate over night to the next joint.I would have lots of swelling.The pain would keep me up all night.Was not even able to hold a key.Then would go away for about 4 months and reappear.Over the years it has got more frequent to the point that I would be in bed every day unable to move. I went to see Rheumatologist who did all the tests and was told they come back negative,although my own GP said my rheumatoid factor was high. The only thing I have been tol is I am positive fir the HLA-B27 gene. I have been given steroids and anti inflammatories and Plaquenil, which made me itch all over.Finally was given Sulfasalazine and was told I have sero negative arthritis. I feel amazing since taking these meds until 3 days ago when I asked to be referred to another Rheumatologist.He assures me I have Fibromyalgia.I am not convinced as since stopping the Sulfasalazine I have had my old pains back.I just wondered if its possible to have Fibromyalgia and only suffer immence pain and swelling mainly in the hands, wrists and shoulders ? I have these on a daily basis. Ocassionally I do have knee pain and I do have neck and back discomfort, but would say the neck and back just ache. Its the shoulder, wrsits and fingers that give me the unbearable intence pain.Anyone who can help I would be grateful for your input

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Lolalou221 said on 06 December 2011

I've been living with fibromyalgia for ten years and have tried many different treatments, medical and homeopathic. Through the years my mobility has been severely impaired and like many sufferers I've used aids for walking. The pain distorts physical perception and it can be difficult even to be sure you're standing straight. I recently started using a plaster that improves posture, a plaster you can put on your back that does what taping by a physio does. It guides your movements so that you can easily gauge when you're moving crookedly. It really helped - it doubled my activity times, is really easy to use and not expensive. Also, there are none of the side effects you get from analgesics.

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morefreedom said on 03 December 2011

I have been diagnosed with fibro 4 years ago but had symptoms for much longer. None of the NHS treatments has worked. I have tried homeopathy, physiotherapy and was referred to rheumatology and put on amitriptyline (hopeless!). I won't even mention all the private treatments I had (massage - useless and extremely painful!, hydrotherapy, osteopathy & others). I was still left with widespread pain, extreme fatigue and general feeling of absolute hopelesness and depression. NHS was less than helpful and only private tests finally proved that I suffered from serious B12 deficiency. Everyone out there, please check this first! Once I started taking sublingual B12 (I had difficulties getting the right dose of B12 through my GP) the symptoms improved. That said, the neuropathic pain and allodynia, which is the extreme pain sensitivity to touch, are still there. Taking kelp seemed to relieved the symptoms slightly.
Recently, after struggling with fibro and not being able to work for the past 2 years I found FMS clinic in London who specialise in fibro and ME. At my very first appointment I got a couple of injections in my shoulders and I can feel the difference. I was also prescribed gabapentin which appears to relieve the pain. For the first time in 5 years I really started feeling human again. This treatment is not cheap but living with this pain for the rest of my life was not an option.
Finally, I would like to say that GPs are completely clueless about B12 deficiency and other associated conditions such as thyroid problems which go together with fibro. Having struggled all those years on my own and on occassions feeling there is no point in carrying on living like this, I do understand what you are all going through! As difficult as it is don't give up and start first with some private blood tests and find a clinic who do understand this condition. Good luck!

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holmgirl said on 01 December 2011

Hi all im new here i have been suffering for the past 10yrs from what they thought was rhematoid arthritis, had every test, scan and tablet known to man.
finally had enough of not knowing and deff diagnosis, so asked for 2nd opinion, saw top consultant in exeter who diagnosed FM within 2 months of seeing her. so now trying the meds she suggested, been on tramadol and now she wants me to go on duloxetine and gabapentin as well.
well started on the duloxetine yesterday and had major reaction!! really thought i was dying or having some sort of stroke, every muscle in my body seized up and i could hardly move even the muscles in my jaw. thought my head was going to explode with the needle pains and blurred vision. anyone else have a problem with this. have app to c dr tomorrow for next course of action, bit scared if it happens again.
i was surprised at how in depth this condition is, i started to think it was all in my head for such a long time, but my doctor has been great, and its nice to know there are others out there
:-)

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Harpo said on 17 November 2011

Hi Andrew Bell could you please post on this site the website that you buy D-Riband - supplement I have tried to Google search but can't find it. I would really appreciate it if you could let me know where to buy this. I am willing to give anything a go as i am in so much pain i can't take it any more. thanks

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jan55 said on 13 November 2011

Katie_29 I too get most of the symptoms you list. My GP said that I have only been diagnosed with fibro as they don't know whats wrong with me. I have twice been diagnosed by orthopeadic surgeons as having fibro and have no faith in my GP. I have been like this for over 10 years.

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CorkyHannah said on 02 November 2011

Hi,
About 4 months ago I got diagnosed with BJHS anlong with a few othe minor things. When researching BJHS I found that most people only suffer from minor pain and mainly just the flexible joints however I suffer from pain all over my body, aswell as severe headaches, stomache sickness and dizziness. Even places where there are no joints it hurts real bad. This has really perplexed me and my parents (I'm only 14) and now looking on this fm site it seems that this is something I could have too.

I was wondering if anyone was also in the same positiona as me???

Thanks x x x

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CorkyHannah said on 02 November 2011

Hi,
About 4 months ago I got diagnosed with BJHS anlong with a few othe minor things. When researching BJHS I found that most people only suffer from minor pain and mainly just the flexible joints however I suffer from pain all over my body, aswell as severe headaches, stomache sickness and dizziness. Even places where there are no joints it hurts real bad. This has really perplexed me and my parents (I'm only 14) and now looking on this fm site it seems that this is something I could have too.

I was wondering if anyone was also in the same positiona as me???

Thanks x x x

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jaimeDLG said on 29 October 2011

I have muscle twitches in my left thigh about four to five times a day just above the knee and occasionally twitches in the eyelids and arms and upper chest.

At times my legs and arms tingle a little at times

I also think I have restless legs syndrome as I cannot sit at peace and change my seating position every few minutes and I do move around in bed at night and although sleep well I probably waken up briefly for a few seconds.

Sometime i have muscle aches and joint aches but would not say I am in pain

Do I have fybromyalgia ???

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lisakirby said on 16 October 2011

hi my doc has just told me i have got fm and ive bin in pain for 4yrs know and couldnt undastand why am in so much pain ive had mri scan that come bak that my spine was bad that my discs was bullging and and was drying out but the pain has got worse over the past 2 n half yrs that ive cryed with it and with the pain i get in my left hand side of my chest is horrendous that i realy thought was havin heart attack the first time i got the pain my head aches r horrible that just want 2 knock myself out 2 stop the pain i am 35yrs old got a 9yr old daughter and just wish could do the stuff what i used 2 be able 2 do with her even tho she understands i carnt do the things she wants me 2 do

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AndrewBell said on 13 October 2011

I have had Chronic Fatigue and Fibromyalgia for 6 years. Not here to list what Ive been through as Im sure its similar to everyone else's experience...but to share some things that have moved me towards recovery, significantly:
1) A book and whole recovery protocol "From fatigued to fantastic" by Dr Jacob Teitelbaum which talks you through supplementation, diet, everything you need to consider (and also sheds a huge amount of light on why/how you got like this in the first place - it is a total revelation to read (and Ive read all the books I can get my hands on)! I am following the protocol and having significant results.
3) D-Riband - a supplement (type of sugar used specifically by muscles) that is readily available (highly recommended in the book, can bring about almost 50% improvement in symptoms) no side effects and gives me a massive boost when I take a spoonful 3 x a day, wish Id known about it years ago!
3) NLP treatment (the sub-conscious mind plays such a huge part in all this, its so important to tackle) - and in particular, EFT treatment (easy to Google - sounds odd and you may think ineffective as I did but it really works). I had two amazing sessions that moved my recovery on in leaps and am now teaching it to myself from the book "Self help treatment for CFS/ME using EFT tapping" by Kelly Meisak. I had a massive pain episode last night following by the usual leaden exhaustion this morning and have just managed to shift the pain and lift my energy significantly using the techniques taught in the book so whatever your thoughts (and I was a total cynic to start) its really worth a try, what's to lose?

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angelelaine55 said on 11 October 2011

I did go to see my doctor he noticed how much pain i was in. He has refered me to have an assessment by a Physiotherapist which is for next month. He seems to think its a problem with a nerve in my back. I have had a trapped nerve before and the pain is nothing like that. I do get a hot flush feeling around my knee and down the side of it something like minute electric shocks, pins and needles.
Since seeing the doctor i have been getting a pain across the top of my shoulders and up my neck and i get a headache but thats a different pain and its not like a tension headache either. Also im getting a shooting pain in my knuckles and my elbow is painful to move and touch at the side. The pain in my hand, neck and elbow isnt there all of the time. I dont sleep very well at night i wake up and the pain isnt there until i start to move around. The pain and not knowing what i have is getting me down. I feel useless. Its the not knowing what i have is not nice. I want to get on with my life but after reading the comments on here it seems like i could be in for a long wait for any type of solution. I use the net to look at different types of problems, im not one that reads things and worries about what could be wrong.

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skit said on 05 October 2011

I too am pleased that NHS has given some information regarding Fibromyalgia.
It would be rather lovely if student nurses and Student Doctors had Fibromyalgia diagnosis and some idea of treatments in their respective syllabus.
AE Tee
Group Leader
HAND(Fibro ) Group
working with FMAUK.

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desquinn said on 27 September 2011

Thank you to NHS Choices for adding FMA UKs clarification on the diagnosis process. The description of the GPs examination is now correct and should reduce any further confusion.

Regards
Des Quinn
Vice Chair
FMA UK

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littlemrsgiggles said on 23 September 2011

There is help out there, ask to be referred to a specialist or rheumatologist:


Personal opinion:

There should be more awareness of this condition and Hypermobility Syndrome and Ehlers Danlos Syndrome and similar conditions, as well as awareness when people develop severe Symphysis Pubis Dysfunction, that people may have underlying joint conditions and if suffering long term should be tested to find out if they do incase these underlying conditions are causind SPD to stay or become permanent.

I have HMS and SPD and it was because of my SPD staying i was found to have HMS, as well as the fact i needed wheelchair during pregnancy and now need it for life (not everyone is severe) 1 in 4 women develop SPD during pregnancy*NHS book for 1st time mothers 2009, and ACPWH state that IF SPD aka PGP is left untreated it can last over two years.

Fibromyalgia is a condition that a lot of SPD victims have been found to have via charities, as well as others having HMS and/or EDS and more...

Rheumatologists working for NHS have been fantastic in my area *not stated* in diagnosing these conditions once people have been able to access them.

I recommend looking up charities if anyone has fibromyalgia and is considering pregnancy or is pregnant or had their child. Same as people who have HMS i recommend that you do a web search to find local help and charities too.

Hope this helps.

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kittyblue said on 23 September 2011

i am diabetic,i get sever pains in legs and ankles.the muscles in calves go so rock hard i have job to walk,sometimes the pain in ankles i cant move my foot back to normal.its mainly in bed.my doc said its diabetic related.i started a gym but still get this pain at night.last night i cried so much.im on cocodamol for back pain i have had for last 20yrs.had a statin bt done came back i cant take it i thought that may be cause but been off them 6months still got the pains.

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mrschalky said on 21 September 2011

i finally got diagnosed with fm yesterday after previous appointments with gps and consultants with nothing to offer apart from painkillers and rest!!. i have been off work since april of this year and since being off each day is worse. i have 3 great children 4, 8 and 16. they have been so supportive throughout all of this and i cant thank them enough. my husband who works away all week has often given me the impression that i was faking all the constant pains so when i told him yesterday what the consultant said you could hear the remorse and relief in his voice.
the pain is so unbearable every day it is undescribable to those who dont suffer with fm. i just hope now with the help of the medical proffesion i can learn to deal with pain and have a more normal way of living.
has anyone else been given the Fentanyl patches and if so how did they make you feel?. i have been on them now for about a month and even though they help eleviate the pain its the dizziness, sickness and dis-orientaion that i can stand. i am also on tramadol 400mg a day, amytriptiline 20mg a day and have been prescribed diazapem (which has no effect), pregablin (which gave me a stoned look as described by my friend)
when the consultant asked me yesterday if there is any part of my body that does not hurt i had to be honest and say my ear lobes. this made him smile but i dont think he was being sarcastic.
but it is so nice to finally have someone put your mind at rest and give you a diagnosis so that you can at least start to move forward

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andria333 said on 10 September 2011

Arriella i feel for you hun it must be very difficult going through this alone. there are some wonderful groups on facebook. they are closed group for privacy and everyone suffers from fibro so the support is fantastic, they really understand i dont know how i would have managed these last few months without them. My name is Andrianna Taylor if you want to add me and i will invite you to the groups take care hun x

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Arriella said on 09 September 2011

I have very bad fybromyalgia with every symptom going nearly and im 36;/
One thing i wanted to mention is a condition i discovered was contributing to my fybromyalgia ...

I suffer from intense headaches and migraines, so badly i have wanted to no longer exist. Years of headache/migraine, face pain, ear pain, neck pain, dizziness that is debilitating for me, pills that do nothing but make me sick...i am existing everyday in pains i cant do anything about, worse than any fybromyalgia pain i have, which are all painful and debilitating themselves...with fybromyalgia you also are likely to get a condition called TMD or TJD, now the doctor never mentioned this....but it is mentioned in a lot of reports regarding fybromyalgia.

Temporomandibular joint disorder;

' Acute or chronic inflammation of the temporomandibular joint, which connects the mandible to the skull. The disorder and resultant dysfunction can result in significant pain and impairment.'
Please have a look if you are suffering from headaches/Migraines/ear pain/dizziness/neck pain/Tinnitus/Dull, aching pain in the face/Biting or chewing difficulty or discomfort/shoulder pain/Reduced ability to open or close the mouth
It has taken over 3 yrs for me to finally get a result...

This is my chance to try and take away my worse part of fybromyalgia, then maybe i can try to live a little again , some things you can cope with and others are very difficult to. Nobody knows unless they go through this.My friends and family have all abandoned me, i see my parents once in a while. Its a lonely isolated illness i wouldn't wish on anyone.

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stanners01 said on 08 September 2011

Hi, im new to this site and at this point don't know if i'm suffering from fm but have been prescribed a drug that mentioned fm and when i read the symptoms they fully describe my problems over the last 18 months. Almost every joint in my body is painfull, i've just had an mri which has shown chronic disc degeneration and small disc protrusion. I am having chronic pain in my upper left chest area and down my left arm and i feel like i want to rip my arm off. Mydoc is also arranging an mri of my neck to see if anything is going on there so i could have a dual problem.
Apart from all the joint pain even when i get up in the middle of the night to go to the loo i feel like the underside of my feet hurt and have to use furniture to get moving. I have constant headaches, problems with my bowels for years, does any of this sound familiar?
Any advice would be helpful, i have not worked now for 18 months ( i nursed my mum with cancer and she passed away a year ago) but prior to that i worked for 35 years. My doc agrees that there is no way at present i could even think about working.
I feel at my wits end at the moment and my mobility is getting worse by the day.

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ladysian said on 07 September 2011

@pat16 you may wish to be checked for hughes disease also, as x-rays and MRI's have come back negative - it has many similar symptoms but there is a blood test to rule this out - the clinical name for this illness is anti-phospholipid antibody syndrome, it has taken me 31 years to get a dr to take me seriously, since earliest childhood my mother would take me to the GP and he would say one of 3 things "it's growing pains" "she's attention seeking" or "she's lazy and it's all in her head" my pain has finally become so bad i now need morphine to deal with it, where if i had been given physical therapy etc. i may never have gotten this bad, the only thanks i can give is that i have found an excellent GP who is helpful and kind and i am now getting the help i so sorely need, the best advice i can give to anyone reading this is if your in pain don't let your GP fob you off - insist on seeing a specialist, it's your right and it may stop you ending up in a wheelchair unable to do anything for yourself, good luck

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valerieg said on 07 September 2011

i was diagnosed in 2009 after months of pain i had blood tests that showed my immune system wasnt as it should be and was tested for rheumatoid arthritis eventually told it was fm and same story prescribed pain killers and amytriptyline and nothing else they can do i do have a lovely gp who is very sympathetic and after reading up on causes feel stress has played a big part having had a child with adhd a broken marriage and a parent with alzheimers all in the last few years i also suffered from parvo virus some years ago and wonder if this could be a factor too i had to give up full time work and now have a part time job and some days i have to really force myself to get out of bed and get on with it and i do get depressed having pain all the time it could be worse i have a lovely 3 year old grandson whos the love of my life one smile from that cheeky face and the pain takes a back seat for a while all i can say is try to be positive realise you will have to make changes to your lifestyle and you can cope with fm

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valerieg said on 07 September 2011

in reply to katie 29 i have had experience of massage for my fm at the physio dept at my local hospital i was having terrible pain in my left arm was unable to lift it more than a few inches couldnt put it behind my back and had bad shooting pains from my shoulder to elbow which were so sudden and painful brought tears to my eyes went about a dozen times for physio had really painful massage was horrendous and did stretching exercises at home . it did the trick on my shoulder and i now have full movement still have the usual aches and pains that come with fm but the massage really helped

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angelelaine55 said on 07 September 2011

For 6 weeks now i have been suffering what is like muscle stiffness and pain in my left leg when i walk or stand still. It is not a muscle injury. A few years ago i injured the muscles in my right side lifting my husbands wheelchair in and out of the car, now i am finding it is going into spasm. I cannot see my doctor till next week as he is fully booked. I struggle to go upstairs, up and down steps, I am finding the tendon at the back of my knee to the side pulls, also a couple of times i feel my knee and hip are moving around in the joint, like they are loose. I cannot lay on my left side, in bed and now because im laying on my right side all of the time my ribs hurt on right side.
Im not sure if these are the symptoms of fibromyalgia. I know i have to wait to see what the doctor thinks.

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kathy4441 said on 01 September 2011

I recently underwent major surgery and have been feeling pain and all the other symptoms that go with this illness. I have not been diagnosed with it and have been constantly been given different reasons for my pains. This morning I finally went to my gp to ask for a second opinion from the one my rheumatologist gave. My gp was very sympathetic and realised my distress and suggested it could be Fibromyalgia and to look it up on the net. I am now really hopeful that I can finally put a name to this and try and deal with it. Thanks.

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pat16 said on 29 August 2011

Hi everybody. Just thought I would reply to sx51alx to say I have all the same symptoms and more. Pain management I am afraid as been of no use to me whatsoever. Nothing shows up on X Rays that connects with Fibromyalgia. I was in so much pain at one time (couldn,t sit down for 18 weeks) and now can only do so for small periods of time and can only lie on one side of my body for any kind of comfort dispite taking over 20 different painkillers daily. The doctor finally sent me for a MRI scan which came back telling me I had 3 badly worn discs in my spine but that they shouldn,t be causing me any problem so no luck there either. I know all this seems to be a defeatist attitude but after 15 years it does get me down at times. I have tried everything possible to no avail which as cost me a lot of money along the way. The only one change I have noticed is that at least some doctors do now seem to believe me which wasn,t the case when I was first struck down with this condition. Also if Katie 29 is reading this I am afraid that massage is no good at all for me how ever light. It just seems to bring my nerve cells to the top of the area and I can,t stand to even have any clothing near the affected area. Best Wishes and keep smiling we are not alone. Just waiting like many for somebody to find a cure.

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sx51alx said on 24 August 2011

Katie_29

I myself have been trained in the holistic world of therapy but sadly, i've had to stop because of the FM condition, manily because of my hands but also, how it can affect me.

Speaking personally, massage is heaven for an FM suffer, but it is only temporary. I had one on Monday night and felt quite emotional as some of the aches & pain were temporarily relieved. I suffer with insomnia which is also part of the problem with FM & whilst I slept ok, i did wake a few times so i'm going to try having a massage earlier in the day as opposed to in the evening to see if that makes any difference.

When massaging someone with FM, it's important not to apply too much pressure as this can be very painful, i find, less pressure & more repetition works for me.

If you're able to incorporate facial and scalp massages in to your treatments they can be heaven.

I'm sure, as you are aware in your studies, that massaging someone, irregardless of FM can bring on symptoms such as headaches, nausea etc (part of the healing crisis) so best to make sure if someone comes to you for a massage if they've got a headache at the time of the treatment & assess how bad it is.

There's so much more I could chat to you about, so, if you want, let me have you e-mail address and I'm happy to chat to you as and when you need to. I don't always come on here :-)

Best wishes.

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Katie_29 said on 24 August 2011

Can anybody help me? I'm studying sports and remedial massage and as part of my assignment I have to study certain conditions one being Fibromyalgia and how massage can help patients. Has anybody had any experience of massage? Has it helped your condition? Your personal experiences and opinions would be very much appreciated.

I am new to this illness so forgive my ignorance, I have read all your comments and I can't imagine how it feels I hope you find comfort and wish you a speedy recovery and pain free life. If my massaging can help one person with FM that would make my studying worthwhile. I look forward to your replies.

Thank you

Katie29

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sx51alx said on 23 August 2011

hi everyone, I've recently been diagnosed with FM, which, had for some time but can take a while to be officially diagnosed. I know in general we suffer with aches and pains, which vary from mild to "just can't cope" but i also have problems with my sacral/illiac hip area, wondered if anyone has same problem. Was told today by my consultant that there's an abnormality but to wait until i've been to the Pain Management Programme he's putting me on to see if it helps, but i'm frustrated... if an abnormality show's up on x-ray, surely they should investigate it further.

One thing I find really had to cope with are the headaches, going to bed with one is bad enough but waking up with one, hek, it's like 10 migraines a hangover rolled into 1 then banged with a sledge hammer, does anyone suffer with headaches like this? There are a number of problems I have and am interested to hear/read if anyone suffers the same, i've listed them below:-

1. The feeling somethings crawling over/under your skin

2. Dry nose/mouth/eyes

3. Pain in rib area, hard to breath, breathlessness

4. Shooting/stabbing pains, mainly legs

5. Feet & ankles swell

6. Hands & Feet feel like they're swollen but not

7. Body temp increased to point of wanting to strip

8. Pains in wrists

9. Flemmy/chesty cough, like giving up smoking

10. Stomach pains/cramps

11. Sweating excessively

12. Breakouts of rash's

13. Itchy skin

14. Feeling, cold/flu syptoms, can sneeze a lot

15. Balance

16. Numbness/tingling, mainly hands/feet

17. Concentration, get an answer to a q & then forget straight away & have to ask again

18. Pains around the ears

19. Speech, stutter/stammer

20. Don't seem to be able to understand things like you used to.

I know i've listed quite a few, hopefully it will help some you as well as confirm i'm not the only one.

Sending you all warm virtual hugs of comfort :-)
Michelle

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lovelylea said on 18 August 2011

Hi so sleep
Your problems are just the same as mine and im pleases you now have a answer. The only thing i worry about with you is your so tired which is same as me but you have not been told a answer for. With FM it can be sided with M.E which two are both alike but M.E is the tired sided. Look it up see if that can help you understand it for yourself. Hi to all other suffers hope life treating you well.
Big soft hugs take care all xxxx

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so sleepy said on 15 August 2011

hi all im new here, i feel i had symptoms of mf from a younger age due to stress as i always felt tired and had no energy, but aged 20-25 was my worst yrs of this illness and after several trips to my gp told im young and healthy. And i felt so low and ill all the time i was refered to see a physiotherpyist at hospital they new straight away as i used to ache all over even my skin hurt to touch i used to get high temp an felt at night so ill and the pain in my body hurt so bad i couldnt turn over in bed it took 4yrs to finally no what was wrong, i now take 10mg Amitriptyline they relax ur muscles an i did feel some relief after but its not a cure. i couldt go out for long days as id feel awfull and ache all over. i had a fulltime job and found at the end of each day id hurt and be so tired after. now its up and down when im bad i take it easy i dont ache as much but am still tired alot i have good and bad days but looking back im alot better now than i was im now 29 an i dont let it contorl my life i try to get on and make the most this helps alot. when i used to let it get to me it did. now im in control i do find if im out long or if i excersize it can take days to get right and i sleep very light to at night and most days have a sleep in the day. i now work 2 days its much better for me. xx

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Silver Spur said on 14 August 2011

Have just been diagnosed with FM in the last couple of months. So glad to know there are others out there who understand. Cannot find a support group near me and so this seemed like a good place to start. I have trouble with the left side of my body and amitriptylene is helping with sleep at night although don't want to get up in the morning!

Can anyone give me any advice about diet and also I have terrible pain in my breast at times. does anyone else have this? Would be reassuring to know.

Thanks Guys and keep going xxx

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lanet said on 11 August 2011

Since the beginning of the year i have been having increasing problems with pains, aches, stiffness and fatigue. My 'sympathetic' GP told me he thought i had a 'touch' of Fibromyalgia!
He sent me to see a physio who hadnt a clue... he took 3 sessions of assessment, 3 accupuncture sessions then said he didnt know what else to do and wrote to my GP asking for an xray. This came back clear and now neither the GP or Physio want to do anything else. I feel really rather lost as to what to do.
I struggle most mornings to make it out of bed to work, if i take the Amitriptaline i was prescibed i get a great night sleep but feel detached for most of the following day which isnt good as i have a 40 minute commute into work and then work out in the community, so i have to have my witts about me.
Does anyone have any advice?
I just want to feel normal and well again.

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misery said on 28 July 2011

Hi,Ihave just finished reading all your messages and have sympathy for you all.I was especialy interested to read about the people who have had trouble with their COCCYX. Last year i ended up on crutches as i could not take any pressure on it i had trouble for weeks. I have had Steroid injections in theatre but hasn't helped and i would be interested to know if you still have flare ups?

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purplecat2 said on 13 July 2011

I have had symptoms of fibromyalgia since 2002 and mentioned the pain I am suffering from to my GP in spring 2010, he mentioned it could be fibromyalgia and said he needed to do tests to rule out other things. I had several blood tests and was told it wasn't anything sinister but have not been told exactly what is causing the pain. I am now getting fed up with not having a diagnosis. I am constantly taking a cocktail of strong painkillers which only just take the edge off the pain on a good day. I just wish dr's would recognise this illness and diagnose it sooner rather than later.

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Shoska said on 21 June 2011

Hi, I was diagnosed with Fibro in October 2010. Though I Hd problems since 2006. I think it came on as a result of stress after looking after my mum til she died. I have noticed that stress/anxiety will definitely bring on a flare. Right now I am really struggling as I am about to be made redundant, so quite stressed. My GP is a star and will help all they can - I have been taking amitriptyline at 25mg and this was doing well but it seems not to be as effective now. I seem to be bruising for no reason and at the weekend had scary breathlessness and was so tired making a cup of tea exhausted me. I would like to help myself more but don't know how to - any advice welcome. I want to be fitter and lose weight but the pain makes me too tired by time i come home from work to make myself exercise. Also what exercise is best?

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Miss FB Helter Skelter said on 17 June 2011

I was diagnosed with FB by a wonderful doctor YES most unusual and it was way back in the stone ages, I choose not to read anything written about it and believed ignorance was bliss - I have lived with this since I was 14 some 30 years now,. Helter Skelter says it all I feel like one of the lucky sufferers I am up and down, I hold a great job (some days with impossible strength of character to get out of bed - I am sure this is shortening my life span!!!) other days I feel just fine almost normal. I so enjoy my vino and occasional cig and have been known to do the odd recreational drug, I have stopped all these for periods over the last 30 years to no avail so I gayly continue the helter skelter of stopping and starting when there is no change in my overall condition.
I have the best bed and bedding, at least when I can not sleep cosiness is a comfort.
The worst thing for me is my daughter has it and that pains my heart I would take all of her FB and just be a Helter.
I enjoy the small pleasure of being able to open a jar tis a good day then.
My boss is a great man I do not say that lightly he understands my strengths and weaknessess and for that I am grateful.
Gabapentin tho not for everyone works sometimes.
Take every small pleasure in life for it is our only one - cheesy I know but true.
To all FB sufferers out there it is a hell of club to belong to - I'd much rater be a Philatelist.

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User564895 said on 15 June 2011

I had to find out what was wrong with me i was going to the doctor's every other day at one point i thought i was haveing a heart attack and like most of you i was given pain killers and antidepressants which most of the time make you feel worse,
im in so much pain most days i can't get out of bed if i get two hours sleep in a night its a good night , i was in a bomb blast when i was 14 years old and have suffered pian most of my life but these last 2 years have been the by far really bad, is there any benefit that anyone with Fibromyagia can get ? as i cannot work anymore and really need some help ? i would be very greatful if anyone could help me .

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SilentSufferrer said on 12 June 2011

Over 10 years, I have had,and believe this started when my first rta occured, leaving me in a neck brace for 6months, and medication for 12months+.
I've sustained two more minor incidents since then, and then last April, an rta where the ambulance insisted the took me to hospital on a spinal board. My stubbornness and shock made me refuse this, and gp prescribed medication for pain. I have a botched dental job, that's left an abcess in my upper mouth and head (finally getting it fixed-gotta have root canal etc). The pain and discomfort is neck and spinal, and so uncomfortable, giving sleepless nites. I also have very flat feet, thus insoles are required,and too much walking pains and blisters my feet, and pains my lower back. Last GP visit has diagnosed me a manic depressive. A friend has suggeusted I read up on Fibromyalgia. I have read 6other sites first. and now I am dumb-founded. Have I been mis-diagnosed for years now? I lost my job and struggle to find suitable employment.( last boss did not understand my symptoms and would put work load pressures on me where I struggled to perform to satisfy his work expectations)
Tomorrow I will visit my gp, as I need to know if I should work and how can I better my health. I am sure, like many others hear, my gp too will shun the theory of Fibromyalgia, but as exorcise worsens my pain,anti-inflamm's and pain killers have done nothing I feel I need the re-assesment bearing Fibromyalgia with paramount consideration.
I symperthise with all sufferers, and hope GP's will realise this to treat it early rather than what seems so often to be later...too late.

I hope to return to a 'normal' life but it takes GP's to assist this. I hope to update this situation soon.

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andria333 said on 09 June 2011

mispretty my heart goes out to you i have just returned from my doc and although he wasnt as rude and downright out of order as yours i find him very unsmypathetic to the amount of pain im in. i totally agree its about time fm is recognised for what it is, a very painful condition that puts countless limitations on a persons life.

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mispretty said on 29 May 2011

i have suffered with fm and crps since 2006 diagnoised in 2007 after seeing many drs after i had a work accident and broke both wrists and spinal damage i have recently registered with a new dr and needed my pain medication after i told her that i suffer with fm she told me that she does not accept this after 4 years of pain and there are worse people off than me with cancer i was so upset and shocked by this has my mother died from lung cancer recently and i nursed her through this terrible illness i could not believe what i was told she just treated me like i was a hyponcondriac very uncaring and no understanding of fibromylgia or chronic regional pain syndrome my symptons are getting worse i wake up stiff every day i do not sleep well so i am very tired all day my concentration is not good because if i try to do anything the pain is constanly there and my concentration goes to what i was doing to concentrate on the pain i am in i never knew that you could hurt so much with this condition it effects all my right side more but i feel pain all over there is no help i have had counselling physio and now on constant pain relief and antidepressants my memory is effected i keep forgetting so i write everything down now i do not understand why the drs do not understand this condition they should there is a lot of people with fm it is a long term illness and this needs to be recognised

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patmustard36 said on 27 May 2011

I had a road traffic accident just before my 16th birthday, were I broke all my ribs sholderblades collar bones, sternum and 2 vertabra in my neck. As a result I have always suffered chronic pain, in particular my neck and back. I had been repeatedly told that it was all in my head. Over the years the pain has increased dramatically but this is also due to throwing my self around like a crash test dummy and breaking numerous other bones. I would be in a gym 7 days a week working out like a mad man, until at some points I was nearly passing out with exhaustion/pain. I have struggled repeatedly to maintain employment due to extreme changes in ability and mental capacity. Now my doctor after 24 1/2 yrs has said I suffer from Fibromyalgia. Only now, when I have just about fallen to pieces and given up do they give me a diagnosis. and that is it! No other information, No leaflet, no groups, Nothing! Has anyone any Advice?

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lainey71 said on 26 May 2011

I have just been diagnosed with fibromyalgia after years of suffering.But i still dont know anything about the condition i was just told i had it given a leaflet a prescription and told i was being discharged so i still feel very much alone and in the dark i cant even walk properly i cant stand the extreme pain and tiredness just walking upstairs is an effort some days i get up and go straight back to sleep i have found out through all the various scans ive had that i have arthritis in my spine and neck which doesnt help and to top everything off i also have epilepsy i have been on painkillers for a number of years and feel like i have never been listened to off any gp ive seen i have been diagnosed by a rheumatologist it saddens me to see so many people suffer like this and gett ignored by so called health profesionals

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groovyglen said on 25 May 2011

When i was 17 i had an accident which caused horrendous pain in my spine which i have had ever since. This consequently caused osteoarthiritus in my knees and hips i was told my knees and hips at 48 were like those of a 90year old but they told me to come back when i was 60 for 12years i went through hell on becoming 60 i went again in a wheelchair by now and was told i was so bad i was inoperable let this be a lesson never just accept wats told to you fight for ur rights. I have also got FB which is in my left side it starts in my head like someone is pressing on my head with a heavy implement it goes down to the back of my kneck and it goes down the from of my face ie my eyebrows cheekbones ears chin my gums and teeth on that side thou none are bad then all down my left arm especially my wrist and fingers. My breast bone and my ribs at the back all the way down my spine tail bone and leg. It is so bad i put deep freeze rheumatic cream in my hair all over my face and my body it doesnt shift it but it takes the feeling away for a bit. Then i take my 13 items i get from the pharmacy on perscription which have done no good watsoever i have been on tabs for over 40 yrs i have had everything i am just starting now on Pregabalin and praying i will let u know how i go on. I am in horrendous suicidal pain everyday every part of my body hurts over the yrs i have seen and paid for endless specialist pain clinics all making promises all to no avail. Do not let the doctors fob u off if u think u have FB it is there spend a day with me and u can see wat it does to you. You have to try and be positive it is very hard i am in a wheelchair but cant even sit in that cause of my knees so i never go out but i cry lots but i laugh more we have to deal with wat god dished up for us and at least we are here there are many people in the churchyard who would like to be in our shoes. Chin up god bless u all we should set up a facebook to exchange stories wat helps and wat doesnt.!!!

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BigBrownBear said on 12 May 2011

Hi
I have fibro and today May 12th is the International Fibromyalgia Awareness Day.

Raising awareness of Fibro is an ongoing struggle for all of us, but we can all make a difference. Just by making an effort to tell people about your Fibro, you can raise awareness.

So today, why not try to let one more person know that you have Fibro?

If you have a Facebook or Twitter account, this is very easy - just Tweet or change your status to say "Today is International Fibromyalgia Awareness Day. Fibro affects 2 million Brits including me. Get more info here: http://fibroaction.org".

To everyone who did their bit today, well done!

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kelly8247 said on 19 April 2011

My mom has been suffering from Fibro since she gave birth to my youngest sister (now 18). Two years ago two of my sisters (18 and 22 respectively) were diagnosed with Fibro and my third sister (20) has CF (a linked condition to Fibro). I am the eldest child (23) and I thought I was the lucky one out of my family to not be suffering, I was considered the healthy child. That was until I had a minor car accident last november (only had whiplash). I was having sleep problems prior to the accident, I was sleeping 10+ hours a night and not feeling any benefit from it. Had the usual bood tests from the doctor (diabetes, kidneys, thyroid etc) and all came back negative. Since January this year I have done a complete 180 and now I am unable to sleep for more than 3 hours (3.5 if I'm lucky). The sleep deprivation started first and then I noticed I was getting aches and pains in my knees, hips and lower back. I started thinking that maybe I was slowly getting Fibro. I have been keeping a pain diary since the start of March and am going to the doctors next week with my "evidence" to back it up. I have felt like the pain has slowly got worse over the last 6 weeks or so. Does anyone have days where they actually feel ok with no pain at all? I am currently having one of those days where you think did I just imagine it all. I hoping that my doctor will refer me to my mother and sisters consultant so I can get a diagnosis. Without a diagnosis I cannot get support at work, reduced hours etc. How do other people cope with their working life and Fibro. I am the only person working at the moment in my household. My sisters and mother are too ill and my dad is a carer for them. Appreciate any comments/help. Kelly

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debbiebren said on 12 April 2011

I also get a sore bottom (coccyx) as you stated (Carol69) at times. I was not sure if it was from Fibromyalgia or something else. Glad to hear I am not alone. And I am not sure what we can do about it.

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kaleli said on 12 April 2011

I was diagnosed with Fibro 2 years ago after struggling with symptoms since my teans (20 years ago|) having been treated as a time waster and hypochondriac by GPS I initially thought that at least getting a diagnosis would mean I would get some help. Not so, as I get older the symptoms are getting worse, and apart from amitryptaline and loads of blood tests that never show anything thats my lot. I woudl dearly love to talk though the management of my fibro with a specialist who understands the complexity of the condidtion, but it seems that the whole of the british NHS is at best ill informed, so I tired to inform myself and then engage my doctor in a proper discussion - to no avail. I feel crap enough as it is - do I really need to fight with the NHS to get some proper help?

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User545901 said on 09 April 2011

after i gave birth to my daughter i had been feeling very tired! usually tired, i told my midwife she said its normal your a new mum... but 4 years later and i still feel the same. Ive been getting chronic back pain since i became pregnant with my daughter, and 2 months ago i just woke up with server pain in my neck and shoulders which sometimes goes down into my arms and legs also causing serve headaches which hasnt gone away I feel like im getting weaker as time goes on.Its not terrible every day but its starting to be that im very tired and weak most days. my doctor has told me it is stress and its my depression that makes me tired. i know its not maybe partly stress but the tiredness and muscle pain is definitely not depression, god it is laughable! also on the days i feel really bad my memory and attention span is terrible and sometimes i find it hard to talk at a normal speed. Do any of you think i possibly have this illness? i would love to just be diagnosed with something so i know its not just in my head, it gets me really down :(

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keltix41 said on 02 April 2011

I was diagnosed with FMS in 1994 after 20 years of "NAD" (no apparent disorder) on my medical notes. Not much help though...I'v decided to keep my body as fit as it's able to cope with and, recently, Rhodiola Rosea & 5HTP have helped (along with DHC & Co-Codamol).
Last month I took my 8 year old to doc as she's showing symptoms & was told "we don't usually find children develop FMS until they're attention seeking teenagers" !!!! case closed...they didn't even check her over or run any tests, just prescribed paracetamol for her "growing pains" & sent us on our way. Hmph, so much for progress.

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Rosie A said on 30 March 2011

I have been to the Doctor's for months now telling him of my symptoms. His response has always been that it was symtomatic of the stress that i have been under for a good few years now. I found that so fraustraing as i needed a proper condition diagnosed so that the pain i feel daily will be able to be cured. It seems now that i have been diagnosed with Fibromyalgia which is what he thought all along and have looked up the symtoms and now i have to agree with him. Reading your comments and seeing that you are all going through the same as me is reassuring and a little sad as well. At least, i now know that it is not all in my mind and the pain i feel is real.

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pat16 said on 21 March 2011

In reply to Carole69 i Just wanted to say you are not alone in your problems with your bottom and your painful coccyx. I always have pain in mine but remember that the muscle in your bottom is one of the largest (I was informed of this by a G.P. At one particular flare up I was unable to sit at all for 18 weeks due to the pain and even though I am now on much stronger pain killers the pain still comes through. I have spent the last twelve years having to sit on an old plastic garden chair which I took into my kitchen. I dread it if I can make it to the doctors if I have to wait a long time as any other type of seating is unbearable. Also if I touch my coccyx or feel it touch the chair back the pain can be tremendous and also wakes me up should I have managed to sleep at night. Not what you want to hear I know but it does help in some funny kind of way to know you are not alone. I am just like the rest of us struggling along day to day in the hope any research comes up with a cure or at least something to make the pain more bearable.

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carole69 said on 20 March 2011

Does anyone get a painful bottom? If I don't sit on something really soft my bum is really painful when I get up. My coccyx is sometimes sore to touch but not always.
I know my GP will say its Fibro, but I don't know anyone else who is sore in this area.

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andria333 said on 20 March 2011

Tooklets thank you. i thought it was my heart and ended up on a ecg machine last christmas! it was fine of course but it is very worrying as the pain is so severe, i also had a lot of trouble with pain in my upper jaw that resulted in my dentist taking 2 teeth out!!! and guess what? yes i still have the pain. i agree totally with you that rest and sleep are really important in controling the pain and i have meditated for 10 yrs now it keeps me sane and helps me to stay positive. i did have great results taking amitriptyline as a muscle relaxant but i have had to stop taking them due to some bad side effects. its such a same that people like us who are suffering horrendous pain have to rely on sites like this thank goodness we found them though.

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Tooklets said on 28 February 2011

Andria333 yes I too had this very pain in December, I have had the symptoms of FMS for 2 years but didn't know what it was until today, from google and sites like this. I suffered chronic tooth pain in the root and jaw 2 years ago and severe pain in neck, throat, spine, hips,legs, toes have recurred by degree since then. But as I said in December I was laid up for a day because of agonizing pain around my ribs on the left side and back. I became really frightened as until 1994 I had been a heavy smoker for 20 years, so worried it may be my lung. I think now that I can include it with the fibromyalgia symptoms from what you say.
After my jaw episode I have been on various strengths of pain killers but I think the best remedy seems to be relating to rest and sleep also NLP, auto hypnosis, meditation and exercise. I have considered acupuncture.

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Sunny11 said on 26 February 2011

This has been very interesting to me. I was originally diagnosed about 7 years ago, \When I was suffering from lower back pain and loss of strength in my hands and arms but no help was offered other than to rest! I recently had a very severe bout of night time pain and saw a Dr who after xray,ct scan suggested physiotherapy.
My symptoms are not so severe that I cannot function but are very distressing. During the day I have horrific shoulder and neck pain if I sit still and during the night I have such pain in my hips and back that I cannot sleep and have difficulty turning over. Has anyone else got these weird pains? I also get breathless when I walk up stairs sometimes and have no strength in either arm.
I would love to hear if anyone else has these symptoms and what helps if anything?

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PAFC said on 25 February 2011

I haven't been diagnosed, but every symptom list here and elsewhere describes the full range of problems and hypersensitivities I have experienced for many years.
Regarding the discomfort from clothes, I find that the worst discomfort, irritation or even pain comes from seams, so I wear my underwear inside out. The person who invented soft polyester fleece deserves a medal! Has anyone else had to abandon fruit? I have recently, after years of healthy lunches, because it now burns my mouth. Food (acids?) also attack the skin of my fingers so that they are sore and peeling. I won't go into any more detail - just go through the NHS list, my stuff is all there, on every line.
My history is that I was born by forceps, in Birmingham, during the War. I have had two caesarians (one nearly fatal) and in 1989 a total hysterectomy. My right foot started blistering and skinning on April 25th 1960 after walking barefoot on a cinder track. I fell against the fireplace when I was about 2 and hurt my head; later on a jar fell on my head from a shelf and knocked me out, and later again a curtain-pole came down on me. I have also fallen off horses, but never been badly hurt. I wonder if anyone else has a history of physical trauma that may have some connection to subsequent pain? I don't know if there is a link, but it's worth exploring.
Is it actually worth going to a GP? Or do I just grin and bear it and cope as usual, as best I can?

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worried75 said on 20 February 2011

Reading this has been a real 'light bulb' moment.
For years I've had pain in my lower back, hips and knees.
Have been sent for countless x-rays which have all come back ok.

I suffer with restless legs every night and sometimes can't even stand to have anything covering my legs as they are so sensitive.

My doctor just seems to pass everything off as a symptom of being overweight and it will all go away when I am back to 'Normal'!!
Although he seems to have forgotten that my back and knee pain started when i was 21 and was 5ft 10 and a size 12, not overweight!!!

I think it is time to change Gp's and see if I can finally get some help!!

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Jane Dora said on 19 February 2011

Jane Dora - Thank you Jojostar you siad exactly what I feel when I go in to see the doctor. I feel I am looked at as though I am making up my symptoms. Although I must hasten to add that I have had two referrals to hospital in the last 2-3 weeks and thats good progress. I am on Tramadol, Amitriptillin, but I on my own researched my symptoms on a Doctor website and posted it in 2009. Can you believe I just got an answer on Friday 18th Feb 2011. It clearly states I am suffering from Fibromyalgia. So I will now make an appointment to see one of the doctors and get pain killers suitable and strong enough to carry me through the day. I think DMC should allow us a group meeting so we don't feel like aliens when we discuss our symtoms with the doctors. What do you think? I'm all for it. I do feel as if I'm alone and no one believes I'm in severe brain bursting pain, just because I'm not crying and looking desperate.

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jojostar said on 15 February 2011

I also get very breathless going upstairs,or when I use my arms too much,or walking up a small hill,foes anyone else get this

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jojostar said on 15 February 2011

Hi what KathrynAD said is so true,would you send me that if you can please so I can show my non believers,I've been in agony for the last 3months solid with no break,am on lyrica600mg,cymbalta,tramadol,bacanol,kapak,serquel,plus many others in fact 23tabs a day,have started hypnotherapy(I'm paying for)to see if it helps am desperate,dr looks at me like I've 2 heads,don't know what to do next

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rockinrhino said on 10 February 2011

Hello
Can any of you tell me what your first symptoms were??
My sister has fibromyalgia and I am beginning to wonder if i have it too. For the last 7 months i have been suffering with painful shoulders, it started with one and the moved to both. It seems to be getting worse in that the other week it seemed to spred to my arms, a real deep pain in the muscles of my forearm, and all strenght was gone. As i do not have any pain in my other muscles i am unsure if it is the same problem as my sis, or if its simply the abuse my job requires on a day to day basis.
If anyone has any ideas i would be greatful

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ItsReal said on 08 February 2011

Im 22, i was diagnosed about 2 years ago after visits to numerous doctors since i was 10! The pain has gotten worse over the years to the point of feeling almost crippled. Most days i cannot take my tops on or off, the same goes for shoes/socks. On my good days i can maybe just lift a quarter full kettle, on my bad days i cant carry 2 loaves of bread due to my shoulders. They are constantly painfull. They are tender when pressure is applied but numb if something touches them! I cannot sit in a chair for more than 10 mins without my shoulders becoming more painfull. My hands get so painfull i cant use them. There have been a few times when iv physically not been able to move my legs! Patches of my skin feel like they're burning. I get a pain in my lower ribs which stops me from eating. Iv gone from 9 1/2 stone to just over 8 in less than a year from this. It doesnt matter if its 8 hours or 20 hours of sleep, i still feel exhausted. Iv been put on anti-depressants and painkillers, nothing seems to work. One dr told me 2there was nothing she could give me and that i should just go and buy some vitamins!" this was after been diagnosed. My gp has mentioned physio but i fear this will do more harm than good. Iv been turned down by DLA and ESA. Iv been waiting over 6months for a tribunal to get the decisoion overturned. I know i will never be a mum, I would never be able to hold my child because of the pain. Iv been so depressed. Especially with my own family. I dont know if its that they dont understand or if they dont believe me. they just say im lazy and that i dont want to work, that i just want to lounge around all day! That hurts more than any other pain! Im unable to cook for myself, I often need help getting in and out the bath.This isnt a life im living. Its a life sentence.

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janny67 said on 30 January 2011

I have had symptoms of Fibro since I had my last daughter in April last yr, my doctor is convinced I have it but she sent me to the clinic where I saw a physiotherapist who said I haven't got it, I think maybe she doesn't believe it's real, she said I have the symptoms cause my muscles aren't working together right cause I had the baby, my doctor said she is known in medical circles for getting rid of ppl and sending them away without a diagnosis, I think she thought I was just lying to claim benefits, she offered me amitriptylene which they give to ppl with FB (I already tried that as my doctor gave it me but it made me feel depressed) and she has put my name down for Physio which my doctor said they do for ppl with FB and she sent me leaflets about chronic pain and how to sit properly which they might send to ppl with FB, so why doesn't she think I have it, I feel like she thought I was lying or something, and nobody understands how i feel, my husband will say to me some days "What's wrong with ya?" I say the same as yesterday! I just don't know where to go from here. I don't want to change doctors as she believes me. Until I found this page I was beginning to think I was on my own. Just don't know what to do.

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JCR21 said on 25 January 2011

If you have Fibromyalgia (or M.E./C.F.S.), NHS Choices has set up a blog where you can talk about your life with the condition and discuss issues with other people affected.
The blog is @ http://talk.nhs.uk/blogs/fibromyalgia/default.aspx and you can sign up as a blogger by going to http://talk.nhs.uk/content/Bloggerregistration.aspx
Thanks
John, NHS Choices

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ErinCD said on 19 January 2011

KathrynAD, you have perfectly described the last 20+ years of my life. Other than one 6 month spell of sick leave for 'depression' I worked the whole time until 2 years ago. Finally my payout from work ran out ('depression' again!) and I'm about to start receiving benefits, but that's only because I'm awaiting surgery on each hand (separate surgeries) for osteoarthritis.I had a fabulous GP and Rheumatologist when I lived in Canada and they were incredibly supportive. I find the rheumatologists here seem to just want to shove you out the door (even for the arthritis, I had to fight for what should be pain relieving surgery!). After the surgery I'll have to fight with the GPs to get them to understand that the FM is getting worse, but I'll persevere and do it!
Please people, if your doctors are trying to fob you off, change them because the stress of dealing with ill-informed any unsympathetic doctors will only exacerbate your symptoms, something you don't need when all around you are doubtful.
I had a friend who never understood. Then she had a terrible fall and did some serious damage to her nervous system, now she understands perfectly. It is a shame that it takes something like that for most people to understand!

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phoebe101 said on 16 January 2011

KathrynAD--I couldnt have put it any better myself--recently diagnosed after almost two years of hospital tests and feeling so ill to the point of despair, i am so relieved to finally have a diagnosis to put to my misery...its difficult coping on a daily basis but I have been struggling for the last 18 months in my job and have reached crisis point--after being on sick leave quite a lot, I am currently too ill to work. I work with adults with learning disabilities and am working increasingly longer hours 9-4pm four days a week, even though i am contracted to work part time hours, often outdoors in all weather conditions, with increased responsibilities in large groups on my own with no opportunities for rest breaks -as well as the physical effects of the illness, I have suffered from stress and depression-my managers will not negotiate shorter hours-some of my clients require guide help and i have been pushing myself to the limits of my capability--I work for the health service! ...I feel that i can no longer cope--it will break my heart--i have so many friends at work who have made it possible to get through the last year and I couldnt have managed without their support. I dont know how i will cope financially and if i can get any help.

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daisymay0502 said on 14 January 2011

Well said KathrynAD, I know exactly how you feel. I have a husband who thinks I am making up all these symptoms. I have felt like this for years and its only in the past 4/5 months that the GP started mentioning FM.
People do not understand FM at all!!!

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kathrynAD said on 14 January 2011

FMS is not the newest fad disease. In fact, it isn't a disease at all.it is known as chronic rheumatism, myalgia and fibrositis. Unlike diseasessyndromes do not have a known cause, but they do have a specific set of signs and symptoms which, unfortunately for the patient, take place together. Rheumatoid arthritis and lupus are also syndromes.

The many physical and emotional problems associated with FMS are not psychological in origin. This is not an "all in your head" disorder.

Fibromyalgia is a common condition characterized by long-term pain and tender points in joints, muscles, tendons, and other soft tissues.Fibromyalgia has also been linked to fatigue, morning stiffness, sleep problems,headaches, numbness in hands and feet, depression the list goes on and on.

I think trauma triggered mine.

My pain- is not caused by inflammation.
I can not work with my pain, it`s not because i dont want toIt`s because i dont know where my pain will be i.e;Today it is in my shoulder, but tomorrow it may be in my legs or even in my arms/hands.Sometimes i feel as if it`s my whole body.My pain is believed to be caused by improper signals sent to the brain,
possibly due to sleep disorders. It is not well understood, but it is real.

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kathrynAD said on 14 January 2011

My fatigue - I am not merely tired. I am often in a severe state of exhaustion. I may want to participate in physical activities, but I can't. Please do not take this personally, it isn't because I don't want to. I am, most likely, paying the price for stressing my muscles beyond their capability.

My forgetfulness - Those of us who suffer from it call it fibrofog. I may not remember your name, but I do remember you. I may not remember what I promised to do for you, even though you told me just seconds ago. My problem has nothing to do with my age but may be related to sleep deprivation. I do not have a selective memory. On some days, I just don't have any short-term memory at all.

My sensitivities - I just can't stand it! "It" could be any number of things: bright sunlight, loud or high-pitched noises, odors. FMS has been called the "aggravating everything disorder." So don't make me open the curtains or listen to your child scream. I really can't stand it.this gets very frustrating, noises that have never bothered me before do now.

My intolerance - I can't stand heat, either. Or humidity. If I am a man, I sweat...profusely. If I am a lady, I perspire. Both are equally embarrassing, so please don't feel compelled to point this shortcoming out to me. I know. And don't be surprised if I shake uncontrollably when it's cold. I don't tolerate cold, either. My internal thermostat is broken, and nobody knows how to fix it

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kathrynAD said on 14 January 2011

My depression - Yes, there are days when I would rather stay in bed or in the house or even want to die.pain can cause depression. Your sincere concern and understanding can pull me back from the brink,yet snide remarks can tip me over the edge.I will improve, i dont know when, it might be something little thatwill bring me out of it. Its not your fault and its not mine.


My sleepless nights - Don't be put of by the looks of me in the morning, i might looklike a zombie, this is because i have not had much sleep, my brain wontswitch off, i have 100 and 1 things going around and around in my head, none of it makes since, i used to sleep 8 hours a night, now i am lucky if
i sleep for 2 hours at a time.

Sleepy days- Some days i feel so tired, my body weights a ton, my wholebody aches, i have no energy, even though i have been in bed all night i am going to have to go back to bed again, please understand how i feel,i don't want to live my life in bed, it is not my choice, the choice has beentaken away from me.

My stress - My body does not handle stress well. If I have to give up my job, work part time, or handle my responsibilities from home, I'm not lazy.
Everyday stresses make my symptoms worse and can incapacitate me completely.My hands go numb and i drop things, i don't seem to know how to control myown body, this is not a good feeling.

My weight - I may be fat or I may be skinny. Either way, it is not by choice. My body is not your body. My appetite is broken, and nobody can tell me how to fix it, if only there could be that magic pill. I dont like my bodylike this and i cant help the fact that i crave food all the time, i try my bestbut my best is not always good enough.

My good days - If you see me smiling and functioning normally, don't assume I am well. I suffer from a chronic pain and fatigue illness with no
cure. I can have my good days or weeks. In fact, the good days are what keep me going.I try to do what i can as i never know

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kathrynAD said on 14 January 2011

My medication- I have had to try many different medications, i seem to bevery sensitive, not sure why. Please bare with me if i seem ratty the medscause all types of symptoms, ie: sickness, headaches, drowsy, legs/arm pains.Some meds can take up to 4 weeks to kick in but it only takes a few days
for the side effects to kick in.


Cravings- Please dont think i am being greedy, its not my fault its the side effects of my meds. I try to resist but sometimes it gives me pleasure to
eat that chocolate bar in the fridge, i try to have more control over the cravings and to eat healthy snacks but you always see me with the chocolate
bar.

Clumsy- I know there are days when you think i am clumsy, i really dont
mean to be, i know i drop things but it does not give me pleasure doing it,
My hands dont want to grip things, all the strength has gone, wish i knew where.
My legs feel like they have been set in concrete and i have to drag my legs.


Lunch- Peeling veg is getting impossible as i cant grip the knife, this might seem
a small thing to you but its a big thing to me. I want to prepare the
dinner for you all, i am not getting out of it, its the pain stopping me.
I might blame the onion for the tears running down my face but i dont
like to keep showing you my weaknesses, i feel useless.


This cold weather- is really getting to me, i cant seem to get warm
my bones really hurt today, that might sound strange to you, but its
real to me. My fingers and toes hurt with pins and needles, oh why
is all this happening to me.


Even those who suffer from FMS are not alike.
I may have migraines or hip pain or shoulder pain or knee pain,
but I do not have exactly the same pain as anyone else, we all
have different pain levels. A lot of the same symptoms yes
but also some different.


I hope this helps the non believer`s to understand just a little of what we
Go through on a day to day basis.

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andria333 said on 06 January 2011

i have just found this sight and ohhh thank god i dont feel quite so crazy now! i think i started suffering with fibro after the birth of my second daughter 18 years ago and it has only been recently my doctor has finally agreed! i first heard of it about 7 years ago after telling a friend about my many symptoms she mentioned it. after lots of research over the years and countless blood tests and scans my doc has agreed. a specialist recommended i see a rheumatolagist but my doctor didnt agree. can anyone tell me if this would help as if it will i will press to see one. also does anyone else suffer with pain in their lower ribcage area at the side, on a bad day it feels like someone is squeezing my lower ribcage together, it is a horrible burning stabbing pain? it was this pain,that has never left me completely now for over a year, that got my gp concerned although at first treated me for a bleeding ulcer! i can tick list every other symptom but this one is not so common so would really appreciate any feedback. the sad part of finding this sight is the sheer desperation i can feel as i have read all the comments my heart goes out to you all as i know how hard it is to stay positive and not to just ' give in' to this condition. hang on in there we are starting to find each other and hopefully as one voice will start to be heard x

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mikey32 said on 05 January 2011

I have been undergoing investigations at my G.P.'s for over a year now. I initially started with bilateral pain in my shoulders. I went to see the G.P. as the pain and stiffness was terrible. The doctor suggested some blood tests but the results were clear, apart from high potassium levels. I went to see another doctor at the same practice and they suggested another blood test as there were things they hadn't tested for. These tests came back clear. Meanwhile, I went to my Occupational health through work and they organised physiotherapy. I had 6 sessions with no success. I saw yet another doctor in June 2010 and they referred me to a Musculo-skeletal department and they referred me to rheumatology. Meanwhile, my symptoms had got worse, causing me to take 3 weeks off work because of pain throughout my body, especially around the joints. I went to rheumatology in August 2010 and it took them a whole 3 months to tell me I didn't have arthritis. I have been back to the G.P.'s a number of times seeking further advice and stronger painkillers. I am still at work but it is getting more difficult over time and my bosses now treat me as if I am making up my condition as medical professionals have not come up with any answers. I now believe I have fibromyalgia because I have every symptom on the list. My job is at risk because of performance issues. How do I get my G.P. to realise this? I have seen 5 partners at the same practice. I am so tired of being fobbed off and I need some answers. I just want someone to care and need someone to help me. This condition is affecting so many aspects of my life and I may lose my job. Any advice would be appreciated. Thanks.

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pat16 said on 22 December 2010

Hi. Just to answer the last question I too have trouble with my skin. I haven,t been able to wear anything on my legs or around my ankles for over 12 years now and even the bottom of skirts irritate my skin. Sometimes I am the same with jumpers etc. but have slightly improved as at one time I couldn,t even wear underclothes. The cold conditions such as the snow don,t make any difference to me. I suffer the same either winter or summer. I tried acupuncture for a long time without any result. Sometimes my skin burns and other times feels as though it is being rubbed away and feel as though it is down to the flesh. No end to the problems I am afraid. Best wishes to all

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neffmom said on 21 December 2010

Hi,
I've had Fibro for many years now and was wondering. Does anyone else's skin hurt to touch it. My skin hurts so bad at time that the kick pleat on the back of my skirts hurts my calfs and sometimes my cloths (like shirts and dresses) hurt to wear them. Anyone else have this?

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kathrynAD said on 20 December 2010

FOR THE NON BELIEVERS

A post written by someone else for all Fibro sufferers:

If you were born with healthy genes, you may know me but you don't understand me, I was diagnosed with fibromyalgia (FMS) after months, years or even decades of mysterious physical and emotional problems.

Because you didn't know how sick I was, you called me lazy. I hope by reading this it will give you an understanding into our world.

My life has been turned upside down, i dont really understand it myself, so i will try my best to explain to you how my body has changed and howsome things that have never affected me before do now.

Below is just a very short view into part of my/our world.

FMS is not the newest fad disease. In fact, it isn't a disease at all. It is known as chronic rheumatism, myalgia and fibrositis. Unlike diseases syndromes do not have a known cause, but they do have a specific set of signs and symptoms which, unfortunately for the patient, take place together.

Rheumatoid arthritis and lupus are also syndromes.

The many physical and emotional problems
associated with FMS are not
psychological in origin. This is not an "all in your head" disorder.

Fibromyalgia is a common condition characterized by long-term pain and tender points in joints, muscles, tendons, and other soft tissues.
Fibromyalgia has also been linked to fatigue, morning stiffness, sleep problems,headaches, numbness in hands and feet, depression the list goes on and on.

I think trauma triggered mine.

My pain- is not caused by inflammation.
I can not work with my pain, it`s not because i dont want to It`s because i dont know where my pain will be i.e;Today it is in my shoulder, but tomorrow it may be in my legs or even in my arms/hands.

Sometimes i feel as if it`s my whole body.

My pain is believed to be caused by improper signals sent to the brain,possibly due to sleep disorders. It is not well understood, but it is real.

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poorae said on 18 December 2010

I like the snow but my fibro doesn't.

It's been relentless since the cold weather, in bed for a day or 2 then a couple of good days, do too much, then back in bed again for a day or 2.

My monthly accupuncture usually keeps it at bay but I've stepped it back up to weekly recently to try and get on top of it. Last xmas day I woke up with a flare up and ended up eating my dinner on my lap, this year I hope to make it to the table!

If you haven't tried accupuncture I would recommend it, I don't seem to suffer the level of pain that some refer to, more aches and shooting pains and lack of strength.

Roll on the summer.

Wishing you all a happy fibro free xmas.

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Mosey said on 13 November 2010

I have had fibromyalgia since 1997. I take 600mg of Pregabalin. Before Pregabalin I was in terrible pain, since then I am still in pain but it is about 40/50% less than it used to be. I was and still am a positive person and I feel sorry for anybody who has this illness. I had to give up my job. I am still unable to work but my quality of life and my sleep are so much better. I accept that I am still unable to work but Pregabalin virtually saved me from taking my life as I could see no end to the terrible level of pain that I was experiencing. Pregabalin might not suit everybody, but for me, it has been worth taking although weight gain has been a problem.

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karon13 said on 06 November 2010

hi guys i was dignosed with fibro over three years agao .ive been to the hdryo pools and to physio .to no avail .iam just starting with a real bad bout again with the pain .onlys it moved a little more into my body now my hands .Iwas wondering after reading on here if any one has experianced any difficulty in working iam at my witts end i crnt afford to loose my job and yet iam unable to function correctley with out been inextreme pain all the time .this has taken over my life iam now in pain in my legs feet hands arms and most of all my neck i dont leep right iam twitching all night and sometimes iam very jumpy whilst asleep i just don t no what to do .ive stopped visting my gp with the pain or symptoms any more as they make me feel like aim telling lies please help iam struggling to keep my job and control the pain iam feel like a cabbage .its bonfire night tonight and i no if i go to a bonfire how much pain i will be in with cold etc am missing out on family events i used to love with my family and children please help iam at my witts end .is there any finacille help out there

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sophiew10 said on 29 October 2010

hi guys, i have a feeling i may have firbo, the last couple of weeks have not been good 4 me i have horrible pains in the joints in different parts of my body. today i woke up with pain in my elbow and yesterday it was my leg i have had alot of pain in my hip over the lat week making it difficult to walk of stand 4 a long period, my body feels batterd and my bones feel broken. i also keep feeling very dizzy wen i stand up after sitting and i sometime feel like im going to past out.. i also feel very tired and weak all the time aswell. i have a appointment with my doc on monday which is 4 days away so i will find out what i have wrong. im hoping people will read this and be able to give me some advice.

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pat16 said on 08 October 2010

Hi Everybody. I have written on this site before but after looking last night I realise they have changed the video with regard to Chronic Pain. Just wondering if anybody else had been informed about just what can be done to help in this way because I have been given no information whatsoever regarding this even after suffering with the pain for over 12 years. At least it shows that they believe people when they say are in pain constantly. Hope you are all doing well. I have just been through another really bad patch but seem to be picking up a little once again. Hope it lasts a few days. Best Wishes

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Fibro Babes said on 06 October 2010

What makes me annoyed about this illness so many of us have to pay for treatment. I know there have been a few mentions over magnesium. I used to pay for injections made up with magnesium and b vitamins. They really helped my fibro. They treated my low b12 levels, migraines, helped with sleep and pain. I can't afford the injections due to debt. I am very sensitive to all meds including inhalers. I can't take meds for my arthritis. I have been told to go to a CFS clinic by my local PCT. I have already been on two pain courses. When I was receiving the injections I was able to do the exercises. My health is seriously going downhill. Mobility not too good after so many ops. What confuses me the NHS say go and do CBT. However, if our serotonin and dopamine are low! Surely we need treatment. Those injections helped with that. I have been left untreated. Also most of my life I have been a carer. I now can't even cook a meal. I have done lots of courses ie coaching etc and know we need a positive attitude; but if we are not treated how can we be positive. My Dr and Specialist have been vey good to me. I know they are frustrated that I can't get treatment. I will cost the NHS more in the long run untreated!

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austin43 said on 27 September 2010

i have been told i haveFibromyalgia andwouldliketo know if there are any support groups in stockport that can give me some support .i feel like my life is all about pain and trying to get sleep and feel like i have had sleep at the mo i think i am going mad . the tablets do not work and i have not been to work for 6 weeks and i miss going but i can not see when i will be able to go again . i hope some one can tell me were there is a support group i can go to . thanks for your help

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retired pharmacist said on 20 September 2010

I commenced with my symptoms 12 years ago They were in all respects polymyalgia, except that blood tests did not show signs of imflamation. I was eventually told 3 years later that I had fibromyalgia. My symptoms have varied from time to time and I have also had GPs tell me it is all down to depression.As a retired pharmacist I have tried to research my symptoms but have concluded that fibromyalgia is being used in my case as a cover up because nobody knows the answer. There are a lot of auto immune problems with overlapping symptoms which makes diagnosis very difficult.
So yes, I have fibromyalgia but I am sure it is not the only possible diagnosis.

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Forensic rotti said on 12 September 2010

Hi People,
As bad as it sounds I'm glad I found this site and can see I'm not the only one (it feels that way sometimes),
I have been a sufferer of Fibro for 3and a half years now they think it was bought on by the stress of my last pregnancy and birth as I carried a big baby putting extra stress and then when I had him he neary died but he ended up getting sorted to stay with us so breathed a sigh of relief only to start heamhorraging (sorry for spelling) I lost over 2 pints of blood and wasn't given a blood transfusion (I should havebeen) so I was incredibly weak for a long time while my body tried to repair itself, but I eventually healed from that only to have it replaced with severe pain all over my body I think my doctors tought it was all in my head and they started to make me think I was imagining it but they agreed to send me to a rhumatologist who diagnosed me within a few visits since then I have been put on so many pills that they have to keep upping as unlike a lot of you I dont have sensitivity to meds actually I'm kinda the reverse my liver function is so good it metabalises meds quickly so pain meds dont work as effectively or for as long as they do for most people and I get to a point that I will get the horrid grogy side effects but not the pain relieveing effects so as you can imagine this tends to get me down as I cant keep a control of my pain and I do so like to be in control of myself.
On top of all that I'm also a single mother to 2 boys (aged 3 and 13) so the youngest wants to run around all the time and have lots of cuddles and I get really upset knowing I could do all the things I want to do with my eldest but I know if I were to do the same now for my youngest I'm going to be in a whole world of pain so I cant be the mother I want to be and I always used to have a kick about with my eldest but I cant now as I have to used a stick most days(at 31 yrs old not good) and I have a tendency to stumble alot or fall over then cant move.......

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Boo4Ross said on 10 September 2010

Hi all, been awhile since ive been on here. Well what is there to say, Im worse now then ive ever been I see a doctor at the pain clinic every few months which ive had my last check up on wednesday which my medication has been increased yet again. An go back in 5weeks to see if my medication has improved my pain, if not they are going to take a whole new look what they can do that will balance my pain for me. I also have glasses now as i had an eye test an showed my muscles in my eyes wernt moving as they should but my eye sight is 100%, very confusing as didnt think they made glsses for that. An were wondering has anybody else has glasses for the same reason? Last week i sent off for a test to see if a had a food intolerance an had a phone call from one of there staff today to be told my test came back positive an that i have a food intolerance. it really seems its just one thing after another now an im getting really fed up !!!! A few weeks ago i went to my GP because i thought i had verrucas on my feet that came out of no were to be told by him its an extreme case of eczema, i already have eczema on my face an scalp which i control with cream, but this so called eczema on my feet is very much diffrent from my face an scalp it looks like loads of little blisters, which has now started to spread on my face, arms, legs an hands an the steriod cream which he gave me has not helped in the slightest, Im 95% sure that my feet are now infected an sore to walk on, My mum an partner both think its stress related but why hasent it come out before!!!!!!!! :-(.......................

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nickethan said on 28 August 2010

I also agree that the video is misleading. I have been diagnosed with Fibromyalgia and it is most definately a physical condition. I have in the past suffered from depression and anxiety, and I know how to cope with, manage, prevent and recognise that. I am not depressed and haven't been for a loooong time. I injured my back 8 years ago and this resulted in pain every day due to my back. It gradually spread to my legs, achilles and neck, possibly as a result of muscles pulling and tightening. Then over the past year I started to get pain in my joints, knees and elbows and one shoulder. I get so incredibly stiff if I sit for even half an hour. I feel weak walking up stairs and feel i have to pull myself up with my upper body. All of me just hurts...why?

Dont tell me positive thinking is going to change that, I am positive, positively on here looking for REAL answers. I am not going to take medication, i am starting by trying to break through the pain barrier through exercise and stretching.

More reserch is needed on this rather than doctors feeling that they can 'clump' all those things they have YET to understand under 'psychological syndrome'.

If there are people out there who suffer from negative thinking its probably DUE to walking around in pain all day! If people suffer from poor sleep patterns its probably due to every time you try to move in bed it hurts! Just to roll over.

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rhubarbandginger said on 20 August 2010

Hi,
I am a young mother who suffers from Fibro, I suffer quite badly from fibro and it has got to the point where i cannot even move, I hurt so bad all over as though my skin is burning and as though someone is pricking me with a needle, I have loads of blood tests that are irregular monthly which baffles the doctors (such as liver enzymes, hormones and thyroid and blood sugar) I was healthy (on no medication) prior to the fibro.
I also was not pleased with the video as in my opinion it made it sound as though a 'little' positive thinking is all it takes as though it's a mental illness rather than a physical illness.
I know for a fact their is no way positivity alone could allow me to function daily (i tried in the lead up to being diagnosed) positivity will not make my muscles stronger, will not make me remeber things, will not make me sleep better and will not stop me falling or hurting sooo bad when my children give me cuddles!
Fibro should be recognised more and i believe that so strongly . I have even considered starting my own charity for fibro and families of fibro as it is a completely dibilitating illness when it hits bad, the fact they know nothing about it and i have also been told 'It's a made up disease' by a doctor is ridiculous.
They should be doing more tests on sufferes to see if theirs any connections, more specialist tests, look at the whole history (i had fertility problems also, hypermobility causing knee and hip problems as a child and started menstruating at 9 years old! -Did anyone else have these) and give up hope of a way to treat this.!!!

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ravenskai said on 28 July 2010

Hi All, I was diagnosed in 1996, and I've been through several ups and downs since then, currently seem to be finding a balance between what I can do and what I cant. Learning to rest when I can helps along with some mild exercise, Yogalaties, a cross between yoga and pilaties. I've just started a facebook page promoting awareness of this condition in the UK as often people haven't heard of it and that includes GPs. All are welcome including family and friends of sufferers. I hope this is a good day for you all, take care and don't over do it... Ravenskai.

http://www.facebook.com/group.php?gid=120000974710922

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wendybridger said on 22 July 2010

Hi there,
I found out this month i have Firomyalgia.
I believe the fibro was a result of a neck injury i obtained from work. Damage to my tendens.
I was origanally treated for repeated whiplash, but over time i developed chronic pain in my hips. i thought it was a result of walking funny, not turning my head. After injections from my consultant and blood test he confirmed what i had never heard of before.
I now have pain from head to foot and use a stick to walk.
And boy what is this memory loss thing all about.

I was a driver for a living but now i can't drive i feel i have lost my independence, relying on others to get out and about.
My friend told me i have to enjoy what i can do and not think about what i could do before. i know i will find my way and a happy medium, but i find it frustrating.
I am a bit house proud and being home all
day looking at dust and dog hair annoys me, i think i have become a little OCD. but not being able to do the chores i use to do really gets to me.
I am glad to see a forum with others in the same boat, but it seems a crowed boat. I had no idea what Fibromyalgia was about untill i read this site.
So i Will try to think happy thoughts and do my best to keep smiling,
Nice to meet you all (so to speak)

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Bluecrane said on 09 July 2010

To the lady who tries to stay up for 5 hours a day. Try just 2 hours and 20 mins lie down. I find I can then manage much better.
I laughed at the lady who felt cold when everyone else was hot and then suddenly over heating. I thought I was weird! Now I know it is just one of those symptoms.
To all of you, do try to keep off of too many drugs and ask if you can take half the amount as we are just so sensitive.
Trouble with blood tests is that one time they show abnormalities and the next none. This confuses our poor doctors.
I take1/2 the tranquilliser when needed and an occassional 1/2 syndol /muscle relaxer for sleep. I watch my diet and make sure I don't get constipated and exercise on a exercise bike for 10 mins when I feel good. I am having the best time for years.

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Bluecrane said on 09 July 2010

Hi Guys, I am out here in South Africa at the moment and have been given a tranquilliser. I only take it when pain is very bad and to relax my aching body. Magic! The doc only gives me 15 to last 2 months and it is enough to really make a huge difference. It is only 0.25 grams and I only take half a tablet. The secret is in only having a tiny bit because of our over sensitivity to drugs. If I take a whole one I want to sleep. I have days of feeling absolutely normal Yeh! I have tried taking painkillers and find they don't work so I take this half table of alprozolam and the pain goes away. The other thing is to keep off of alchohol. The Doc here says antidepressants do help some as they depress the pain signals but I don;t feel I want to go on something long term when the tranqullisers help me so much, In saying that, you are right to say that it is not a "stress" or "mental" disorder but I think an adrenal sensitivity brought on by stress and infections. Keep working on it everyone.

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earth2me2 said on 14 June 2010

I began suffering strange symptoms about 5 years ago -pains which moved about my body, numb areas which stayed for weeks then moved somewhere else, sight disturbances, dizziness, insomnia, severe joint pains, dreadful weakness in my neck so I had to support my head. Pain so bad I felt I was being stabbed everywhere at once, nausea, bowel problems, apetitite problems. Also I developed a passion for bottled water. We bought memory foam pillows & memory foam mattrass which helps some but I can't lie in one position too long because of the joint pain. Bedtime’s a nightmare for me as I only sleep 1 hr-1 1/2 then I'm up walking the house with severe cramps in my legs and toes. My hands suddenly go into spasm and 'fold into themselves' and always it's the pain that is the worst thing to cope with. The breathing difficulties scare me too. It took many visits to my gp and a couple of years before he finally put a name to it - "you have a little known condition called Fibromyalgia!" he told me "and you have to learn to live with it!"
He prescribed Co-Codemol for the pain - which very often doesn't work - then Amitryptaline at night to help me sleep which I took for a month but felt so ill each morning I refused to take anymore. Then my hubby noticed that my Amitryptaline were all there, unopened, and our dog's diazepam were missing so I'd taken the wrong things. I didn't take the Ami.... when I read that they are tranqs as I refuse to become dependent upon those things. I find heat helps i.e. hot water bottle on the spine and microwaveable heat wraps around my joints and neck do help sometimes but when the attack (they are random and the severity varies) is extremely bad I fall asleep. I'm living with it but I don't like it and the painkillers make me constipated so I have to take lactulose liquid daily to try to combat that. I'm can be fine one minute - bad the next! Thank goodness I have a very patient and understanding hubby!

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earth2me2 said on 14 June 2010

I began suffering strange symptoms about 5 years ago -pains which moved about my body, numb areas which stayed for weeks then moved somewhere else, sight disturbances, dizziness, insomnia, severe joint pains, dreadful weakness in my neck so I had to support my head. Pain so bad I felt I was being stabbed everywhere at once, nausea, bowel problems, apetitite problems. Also I developed a passion for bottled water. We bought memory foam pillows & memory foam mattrass which helps some but I can't lie in one position too long because of the joint pain. Bedtime’s a nightmare for me as I only sleep 1 hr-1 1/2 then I'm up walking the house with severe cramps in my legs and toes. My hands suddenly go into spasm and 'fold into themselves' and always it's the pain that is the worst thing to cope with. The breathing difficulties scare me too. It took many visits to my gp and a couple of years before he finally put a name to it - "you have a little known condition called Fibromyalgia!" he told me "and you have to learn to live with it!"
He prescribed Co-Codemol for the pain - which very often doesn't work - then Amitryptaline at night to help me sleep which I took for a month but felt so ill each morning I refused to take anymore. Then my hubby noticed that my Amitryptaline were all there, unopened, and our dog's diazepam were missing so I'd taken the wrong things. I didn't take the Ami.... when I read that they are tranqs as I refuse to become dependent upon those things. I find heat helps i.e. hot water bottle on the spine and microwaveable heat wraps around my joints and neck do help sometimes but when the attack (they are random and the severity varies) is extremely bad I fall asleep. I'm living with it but I don't like it and the painkillers make me constipated so I have to take lactulose liquid daily to try to combat that. I'm can be fine one minute - bad the next! Thank goodness I have a very patient and understanding hubby!

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julie bee said on 14 June 2010

Hi
i have had fibro now for about 4 years following a hysterectomy for leiomyosarcoma (cancer) i thought i was going mad i hurt all over sounds daft saying your legs and feet all over hurts and the not sleeping well what can i say. with regards to elaineteal above and amyem i to was working but things got that bad that my gp signed me off sick saying that i could not go back to that sort of job. But i was not told about any employee insurance.

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alison menday said on 11 June 2010

Although it is very sad to hear that there are so many people out there suffering ( i do not use that word lightly ) it is such a comfort to read that my sudden dislike of very loud noises is just yet another of my " Funny Fibro" moments. I was dignosed about 5 years ago and although there is nothing funny about this condition when something new occurs its quite a relief to tie it in with the fibro and not to think something else is now going wrong with me. Like all of you out there i have good days and bad like last weekend when i did some gardening, boy have i payed the price this week. Still onward and upward i say. My friend has been diagnosed with MS and she is the same age as me so all in all i consider myself lucky. I loved the comment by the previous reader of " gentle hugs ". so appropriate. Kind thoughts to you all.

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Nola60 said on 04 June 2010

Hello all,

I am a person living with Fibromyalgia for over 7 years.

I've worked full time and been a parent with care in all this time.

It's not easy.

Getting across to other people about how I felt was difficult as I always looked after my appearance and added my bling.

I referred myself to Occupational Health for an assessment. I was then recognised as a person with a disability. Under the DDA 1995 my employer had to make reasonable adjustments.

1 orthopaedic chair
2 frequent breaks from my desk to relieve prolonged static posture and
3 If case load was becoming stressful it had to be reduced

I applied and got DLA this increased my Working Tax Credit as I was then a disadvantaged person with a disability working.

Kindest regards to all

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claireuk1 said on 27 May 2010

I am saddened by this video. It is not representative of the impact Fibromyalgia can have on ones life. It effects all areas of our lives, social, work, emotional, physical, sexual.

No amount of "positive thinking" can sufficiently manage this neurological condition. Yes it helps, it a good tool to have in our box but it cannot be used alone. If this is the case for this lady - positive thinking and excersie - then it is not representative of us at all.

Also we have to be careful of how we want to portray ourselves to the world. We are trying to move well away from the disproven, dusty theories that FM is a psychological condition, this video almost insinuates that it is.

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liggyx said on 25 May 2010

Hi I am a 40 year old woman and have had FM and CF for 20 years ,I also have an underactive thyroyd, IBS sore throat, infertility,I belive its all linked and caused by a virus from childhood
.I have tried many alternative treatments and really only improved with Bowen,I have recently retried HPT5 i take 2 at night and it helps me to sleep and sometimes in the day if nothing else helps the pain.I take Tramadol and cocodimal ,im trying to cut down they are addictive and sometimes I feel they cause some of the symptoms,I also have 3 baths a day for pain.
In the past I have worked full time ,when my husband left i had to, but it resulted in me having a year in bed ,so I now work part time.The key word in FM is balance,when I worked fulltime I went to bed at 5.30pm and up at 8 and slept all weekend,I now have a patner and need a bit of life,I still sleep a lot which i find totally frustrating,the pain is something im used to I get very bloated and breathless but im determined not to let it beat me I was luky to pay for a specialist report (for a court case involving an employee and FM) this has led me to being able to recive DLA,and I have a mini which has been brilliant .I am really lucky because I have a sense of humor and this has got me through a lot,i went through the nightmare of being diagnosed it took years,and the battle goes on explaining to family,friends and employees,I often feel people think there is nothing wrong with me ,if they only knew,I personally havn't joined a group as I dont want to just be about the FM.I forse my self to work walk dogs and try to ride at least three times a week ,but having FM is like dragging yourself through mud,instead of being cross at what i cant do i try and be happy at what I can do,I am so lucky to have a wonderfull supportive partner.
After having FM for 20 years my advise is to not give up try and look on the bright side do a little bit of something every day and try HPT5 as it can help.
Good luck to everyone

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lunt21 said on 25 May 2010

Hi My name is Teresa and i was told i had fibromyalgia about 4 moths ago now, finding it hard to deal with but will get there i am sure. If anyone uses facebook i have set up a group on there called fibromyalgia u.k so people in the u.k can talk to each other and help us all be there, please come and jont us all. It is also for family members to come and say how they feel about it. Thank you good luck to all x

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hannah33 said on 16 May 2010

hi i'm 38 and have been suffering with tireness and pain for several years, sometimes its all over pain and weakness, sometimes it is more severe to neck, shoulders, arms , and upper back the pains in my calfs particularly at night are excruciating. spasm of the stomach musles and toes so very painful, the list of ailemts is just never ending !!! i feel cold when those around me are hot, and then its like my body catches up and i then feel hot and flushed. over the past 6 weeks i have had intermittent stomache pain, have had scan shows nothing, going for the camera down in two weeks. over the last two weeks have had dizzy spells which has really scared me, especially when i nearly keeled over. some days its like i am in a daze hard to explain but like things around me aren't real. generally over the 5/6 years have had numness in the fingers, have become intolerent to noise and certain lights particularly when driving at night. perfume smells or air freshners cause me physical pain. i have blood tests for all sorts of weird and wonderful things over the last 5/6 years all show nothing, xrays show nothing, which is great but i'm still left in pain and tired most of the syptoms i have had have been put down to anxiety so far.. some one mentioned fibro to me last week, after reading these posts i'm thinking just maybe i have an answer. i am going to try get a doc appointment tomorrow , over the past years i have felt like i was going mad and its all in my mind so i am hoping the doc actually listens when i mention fibro. thankyou all for sharing your posts it has helped me to consider maybe these ailmets are not a sign of getting old or anxiety like i keep being told.

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river3 said on 15 May 2010

hi. i have had fybromyalgia for 12 years now. as my symptoms got worse the doctors thought it was ms and did tests for that. for the first few years my symptoms got gradually worse so that i was exhausted even washing a few dishes and was in constant pain. on researching ms which i thought i may have, it suggested going on an anti candida diet which i did religiously for three months. i still try to eat minimal yeast products. it also suggested taking evening primrose oil daily in larger doses. i took 3-4 daily, to help reduce pain in ms. the diagnosis went back to fybromyalgia but after about a year of retricted yeast and evening primrose oil my symptoms got better and i now can live a more normal life. after two years off work i now work part time. this alone has made me feel much better. meeting people again has helped me in that depression has lifted. i still suffer flare ups and have some constant symptoms but refuse to give up and try to think positively. after a few failed attempts i eventually manged to come off my medication earlier this year. i still take evening primrose oil as i feel this has been a godsend. i hope what has helped me might be able to others. best wishes.

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adv said on 13 May 2010

Hi
I was diagnosed 5 months ago after 12 years of symtoms which progressively worsened.
I had to have a hysterectomy 11 years ago at the age of 31 due to heavy and painful periods which were unexplained. I was diagnosed as having a minor stroke 10 years ago as i blacked out and experienced pins and needles in my hands and feet . I have irritable bowel, and have suffered from depression.
Of course the worse symptoms were the acute tiredness and the pain all over - in what seemed like every joint.
Spoke to one of the G.P's in my practice and he blamed the tiredness and sore joints on the extra weight i was carrying and that i needed to get some excercise !! He didnt want to know that i couldnt excercise due to the pain.
Finally spoke to another G.P. in the practice last November and explained my symptoms again. She immediately referred me to a Rhuematoligist. They requested blood tests and as quickly as early January this year was diagnosed. I am at present on 10/20 mg of Amitriptyline nightly.
I am a student nurse and am really starting to struggle,as i feel "fuzzy headed" and also seem to have no memory to remember information from the lectures.
. Although the medication helps with the pain my sleep pattern is still erratic. 10mg gets me off to sleep but still feel as if i havent slept when i wake up. 20mg gives me a great sleep but feel like a zombie for the rest of the day as it over sedates me.
As with everyone i have good days and bad days. The medication is helping with my mobility and i manage to exercise most days ( even lost a stone in weight !!)
I do feel that the medication is helpful and do feel "as if i have my life back".
I know from speaking to other sufferers that it does seem to be a progressive disease but there is no use worrying about the future. I will take each day as it comes and try to keep a positive outlook.




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melfis48 said on 05 May 2010

My 15 year old daughter has been diagnosed with fibro after two years of running around and jumping through hoops. Since I first suspected it and suggested it, she has gone from having painful legs to hittinh all 18 points. She now is chronic and is on Paracetamol, Tramadol, Amytriptyline, Hyocsine, Mefanamic Acid, Zolpiderm other meds to counteract the efacts of all these meds...and if the pain gets worse than it normally is she has to take Oramorph. She has had problems with schooling, sitting exams etc but is still out there fighting. We have been given 3 hours of Hydro in a pool that was too narrow and shallow for her to use effectively, so that was a total waste of time. Apart from that no help except meds. We are now on a waiting list for the Royal National but am not gonna hope too much. She is so depressed now because she cannot do the things she would like to and has now got to contend with the education complaining that she is not attending school enough, even though, like today she has gone to school in severe pain because she got kicked accidentally at school yesterday. They give her no credit for trying at all, and it seems that because her illness cannot be seen then she is treated as if she is making it up!!!. I feel that she is being "screwed over" by both the NHS and the Education Services and nobody seems to care. She has got this to look forward to now for the rest of her life and it is about time someone out there gave her some real help instead of medications which at her age, cannot be good for her. When she has a bad flare up and I have used all the prescribed meds and it is getting worse, I ring the people that know and what do they say? Give her more Morphine!!!!! The senior GP at our surgery stated, when I was tearing my hair out, "well she is not really ill so I dont know what you want me to do" !!!! Thank god her own GP is not so stupid.

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melfis48 said on 04 May 2010

My daughter is 15 and has been diagnosed as chronic Fibro. Her pain is intense, and now hits all 18 pain points.....and after two years of visiting every hospital possible....including Guys she was diagnosed. They would not listen when I told them it was in the family and maybe that was what it was. She is now so bad that she is on lots of drugs, and then other pills to counteract the side effects, and if she is having a really bad day she has stronger drugs. She is not alloweed DLA, she is not getting any help with anything, no hydrotherapy, massage, and her school are continually complaining about her absences. Only today I was threatened with court action because of this. They want to remove her from school and tutor her at home and do not seem to understand that this will only make her more depressed as it is a form of isolation. What she needs is help not condemnation. Getting so sick of hospitals writing to say she is on a waiting list....she has been waiting for at least two years.....now she is on a waiting list for the Royal National....we have now started a fundraiser to try and get her to the States where at least they will see her immediately. We know there is no miracle cure but at what point are they going to realise that all these meds at her age are harmful and dangerous for her. She needs help to manage her condition not just chuck pills at her. She has managed to get her attendance up by 25% and still they will not give her credit for that. She is being badly served by the NHS and by the educationa authorities and no one seems to care. Sorry to go on but when I see her having a really bad flare up and all they can say is "give her more morphine" then I get so angry and feel so utterly helpless. Maybe if she was in a wheelchair or was unable to hear, then they would take notice, but because her diability cannot be seen then she must not have it. Well she has, they need to deal with it

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trevonet said on 01 May 2010

Hi everyone, I've suffered for 8 years now and from the sounds of everyone, we all are struggling, some more than others. If you are interested in getting some extra help through DLA etc you may find the following website invaluable - www.benefitsandwork.co.uk you can see sample information on how to complete the dreaded forms correctly but if you can manage it, paying the membership fee opens up a wealth of brilliant advice and info that has helped me complete not only my own application with great success but also helped my friends too. They have enormous amounts of insider info that is up to date and are on our side, which is a refreshing change. They totally understand FM sufferers and know the obstables we face just to get anyone to acknowledge our disabilities. If you are needing to appeal a decision, they are the people to look to as they also help with info on that.
Keep your chins up guys, hope that info helps at least one of you. regards

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thelaundrymaid said on 29 April 2010

Hello there

I was diagnosed with FM about six years ago, but was not convinced that the diagnosis was the correct one at the time. I have joint hypermobility and experience pain and swelling in my joints regularly, but apart from that, six years ago I didn't feel too bad.

Over the past couple of years my life has become very hectic and quite stressful due to a change in family circumstances. I have lost over two stone in weight and have constantly ached and felt exhausted.

About a month ago I became quite poorly with glands swelling everywhere, dizziness, loss of balance, cramps in my tummy, and exhaustion. I wake every morning in chronic pain feeling exhausted no matter how much sleep I have had. By the time that I have got the kids to school I can't do anything else but sleep. I get up and manage to do a few things around the house but quickly tire to the point of my speech slurring and spots in front of my eyes.

I have hardly ventured out of the house because by the time I have loaded the washing, fed the cats or cooked, I just don't have enough energy left. I am forced to sleep for a few hours during the day just so that I can cope with looking after the kids after school. I was doing some freelance work for the local newspaper but have been forced to stop. I just feel so lonely at home and isolated. I get so frustrated because I would love to go and meet a friend for coffee or have a wander around the shops, but I know that if I attempt this I feel awful the whole time and won't have enough energy left to look after the kids after school. Last night my daughter had to shower her younger brother because I felt so bad I could barely stand. I feel so low.

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thelaundrymaid said on 29 April 2010

Hello there

I was diagnosed with FM about six years ago, but was not convinced that the diagnosis was the correct one at the time. I have joint hypermobility and experience pain and swelling in my joints regularly, but apart from that, six years ago I didn't feel too bad.

Over the past couple of years my life has become very hectic and quite stressful due to a change in family circumstances. I have lost over two stone in weight and have constantly ached and felt exhausted.

About a month ago I became quite poorly with glands swelling everywhere, dizziness, loss of balance, cramps in my tummy, and exhaustion. I wake every morning in chronic pain feeling exhausted no matter how much sleep I have had. By the time that I have got the kids to school I can't do anything else but sleep. I get up and manage to do a few things around the house but quickly tire to the point of my speech slurring and spots in front of my eyes.

I have hardly ventured out of the house because by the time I have loaded the washing, fed the cats or cooked, I just don't have enough energy left. I am forced to sleep for a few hours during the day just so that I can cope with looking after the kids after school. I was doing some freelance work for the local newspaper but have been forced to stop. I just feel so lonely at home and isolated. I get so frustrated because I would love to go and meet a friend for coffee or have a wander around the shops, but I know that if I attempt this I feel awful the whole time and won't have enough energy left to look after the kids after school. Last night my daughter had to shower her younger brother because I felt so bad I could barely stand. I feel so low.

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msbond said on 26 April 2010

I've had FM for approx 8 years and had ME before that for about 10 years. The FM was triggered when my father died about 10 years ago, the ME got worse and progressed into FM. My worst year was about 2 years ago. I was referred to a pain clinice by my GP, who has been incredibly supportive. Unfortunately, I was too depressed to be accepted on to the programme and had to work through that as best I could. From the pain clinic, my meds were changed to pregablin, which had an amazing effect on my body within 2 - 3 weeks. Since then, I've got better... not enough to be able to work but enough to enthuse me and make we want to get better.

I am on lots of drugs which are helping me but I have to be so careful with my day to day life to not do too much. I swim when I can and I have a power plate machine which really helps. I'm not able to use it all the time but it is low impact exercise, improves circulation and helps breaking down fat and cellulite! That's gotta be good!

Good luck everyone, it's good reading others experiences.

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shorty1108 said on 15 April 2010

Hi

This is a message for soreallthetime mainly as some of the messages you have probably seen arent very positive.

I was in my third car accident on 08/08/08 and have been diagnosed with fibromyalgia. I admit that I suffered alot in my first year as I couldnt control it well. But thanks to amytriptiline (which I cant spell to save my life) excercise and diet I started to feel a little better.

Try and do exercise that doesnt trigger pain like a light swim or yoga and gain strength slowly as trying to do things quickly will hurt and then makes you feel down and its all a big circle.

Food wise try eating alot of greens and apparently avoiding chocolate and caffiene is good (must say Im keen to avoid this rule at all costs). Also keep bmi within the right framework for your height as extra weight is heavier causing pressure, causing pain etc.

Amitriptyline- I have to take half a tablet cos it makes me too tired to play with my stepdaughter otherwise but it suits me just right so maybe request a lower dosage if you feel tired or groggy (or weak as I have felt in the past)

Finally and by far the thing that has made this an easier time MASSAGE REGULARLY, I mean get them. Even if its once a month or once a year they really help. Find someone you are comfortable with and have a massage. My friend massages my back (she is fully trained) and it is the best thing for any pain I have, especially when heat therapy is used. If you cant afford it you can look for a heat therapy massager online, looks massive but is amazing. Get your partner or friend to run it from the centre of the pain and out until the muscular pain disperses. The best feeling in the world.

Other than that be happy with what you have got and live life to the fullest without thinking I have fibromyalgia because all though you may have it, it is not you if you see what I mean. Think any other way and it will take over the person you are.

Hope this helps, sorry if it doesnt

xxxxxxxx

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Borisina said on 07 April 2010

Hi there all - just to say - my flare up got me off to go for blood tests and my vit D is less than half what it should be. Did some reading around the subject and you know I think there is something there also on the same page NHS Choices page was the mention of magnesium supplements - interesting links I think. I am not sure about a miracle cure but one doctor has many years experience treating FM and ME and leading expert on trigger point injections which have fantastic testimonials by FM suffers. He is based at Guy hospital and you can find out more At "fmsclinic" - fybromyalgia and chronic fatigue clinic of London, Bristol and Oxford. I tried to put the link up but it said it was advertising so you will have to google it. I got a load of helpful stuff from them and their testimonials sound amazing. Me? I am off for vitamen D injections, more CBT and going to try "journey therapy" as I believe inalternative therapies - but that's just me. Hope you all find some help and try to beleive that if you can do one little thing without pain one day it is possible to have one other day like this at some point. My story is under the sypmtoms section of this section - but yes it does flare up again - I just need to re-learn my coping strategies and hope for the best.
Best wishes to all - do try this web site I have suggested - it gave me lots of hope.

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fiona8 said on 06 April 2010

Has anyone tried a magnesium supplement? I have a lot of these symptoms but have never been diagnosed, but have also found many of my symptoms listed under magnesium deficiency.

Have been taking an extra 250mg of magnesium for about 4 days - most noticeable so far is that suddenly the insomnia has gone and my mood has lifted. (Chocolate cravings are also down!) The pain is mostly the same so far, so will continue this and see what happens. Please post here if you are trying this too,

Fiona

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vallew said on 03 April 2010

I've siuffered for over 20 yrs, I was diagnosed 15 long years ago.

They say fibromyalgia isn't progressive, but boy are they wrong. I'm currently having the worst flare of my life, I've been signed off work since Aug, and my pain daily increase.

I've been turned down for DLA, atm they are reconsidering my application. I cannot see myself getting back to work, and thank the person who mentioned ppi, will certainly follow that up.

I'm currently trying to stay out of bed at least 5 hours a day, which is hard.

I also suffer from chronic fatigue and bursitis, the fatigue is bad, either constantly sleeping or awake for days. The bursitis is painfull, can't get comfortable and I'm walking with a limp. I suffer sweats/flushes either red hot or freezing cold.

Fibro is so bad, I can barely lift my arms, I'm reliant on others to dress wash and even brush my teeth. I can't stand for more than a couple of minutes, my oh and son do all the cooking and cleaning in the household.

I'm severely depressed and on antidepressants, my medications are as follows, Butran Patchs, Oramorph every 2 hours, Aspirin , Simvistatin and Pregabalin.

If anyone has a mirqacle cure let me know, thanks for reading, please don't think am being negative as I do try and be positive, and have always been a half full type of person, dealing with fibro does this to you.

Gentle hugs to you all take care
Ps. www.Fibromyalgia-Association.org is fantastic, everyone on the forum are great, pop along and see for yourself.

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soreallthetime said on 29 March 2010

i have been diagnosed today. have a young family and a job and a house to keep will i be able to do it all.

am scared feellike my life is over always in pain and tired and feel like i have n fight left will i always feellike this ??
any help would be gratefully appreciated

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soreallthetime said on 29 March 2010

hi, i have just been diagnosed today after 1 year of illness. am very scared as have a demandin job a young family and a house to keep tidy will i be able to do it all? my partner is supportive but says i should carry on as normal (whats that lol) and try not to let it beat me but i dont have the energy to fight anymore

soryy am going onlike i have had a death sentance but thats sort of how i feel any ideas on how i live with this any help would be gratefully appreciated

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kerrymarie40 said on 25 March 2010

Hi. I as of yet have not been diagnosed with fm but I am convinced this is what I have.
I ache from head to foot, I rarely have a good day! I was sent to see a neurologist yesterday who said it wasnt a neurological problem i had, more of a tissue problem! So I now have to wait again to see a different doctor, a ruematologist I think he said! I get pins and needles in my hands and feet, my back and neck hurt all the time, I just ache all over and have felt like this for a long time.
I also have irratable bowel syndrome. I have suffered depression also. I cant remember the last time I had a good nights sleep! I wake in the morning feeling like i havent slept, my hubby says im like a 90 year woman in the mornings especially. My mood swings are terrible and noise drives me crazy, I used to be quite tollerent! I have had various blood tests all of which come back ok?! I cant go on like this, im only 40 but feel 90!
If anyone out there can give me some advice i would really appreciate it as I feel at the end of my tether!
Sorry to be such a moaner but I dont know what else to do as I think my doctor thinks im a hypochrondric!
Kerry-Marie

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Borisina said on 23 March 2010

P.S there are lots of us in the North West and Stockport has some excelent specialists.

Medication for me was Trazadone - its a seditive that makes me sleep not additctive but I awake after 8 hours rested and my pain points having had the chance to recover. I started on 400mg now only on 200mg or sometimes 100mg if I have to get up early - slepp is the best remedy.
I also take Venlafaxine for anxiety and depression - but I would not recomend though as has serious side effects and is addictive - there is much press about how difficult it is to get off Venlaraxine but it worked for me as it was an anti axiety drug. Don't let GP's confuse what you need (ie an anti anxiety drug not an anti depressant if anxiety is the issue).
A good pharmasist is much better in giving advice than the GP as they are more aware of the drugs available and in what forms.
Hope this helps anyone and take care all.

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Borisina said on 23 March 2010

Elaine and every one else suffering - it is an awful thing and is very real - if your GP denies it ask the practice manager to find you a GP who does beleive it - if not write to your PCT asking who they recomend and get a referral if need be. All the fuzziness, forgetfulness, the endless pain and the things that happen to your body and mind are very varied and very real. I can say that each time something changed for me - like very bad night sweats and I needed Tena lady from the age of 38 is all down to FM. If you are looking for support groups go to the FM assocaition web site or ask your GP to find you one. I have had no medical support for six years as the GP's where I live are all hopeless and the PCT needs shut down! But - please read my reply to Starmufc under the symptoms page - (which appears twice for some reason?!) FM does get better but it never goes away - keep hopeful and see if you can get out to sit on the beach in the sun today and just listen to the peaceful rhythm of the waves and watch the vastness and light changes of the sea to find some calm. You can live with this and you can make little improvements - its just not easy.

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Elaine 487 said on 22 March 2010

Thank goodness I stumbled on this site because i've had a particularly "bad" day.My period is due 2morow and I often find my condition(Fibromyalgia) is worse than any other time.I was diagnosed with this condition about 9 yrs ago and since then i've been unable to work.I also suffer with depression and anxiety which doesnt help with my illness. whoever on a positive note i'm looking forward to the summer weather as I seem to have less painfull days when the sun is shining.I feel it would help to be able to talk with fellow sufferers but i'm unsure if any exist in my area (Blackpool) Could anyone help me with advice on benefits that I may not be aware of,such as d.l.a.I would love to be able to help anyone should they need to talk ect.I feel a bit betr now jst by getting that of my chest.....I live alone and dont like to trouble my family with moans and groans all the time so I tend to keep it to myself. Glad I found this site.....fantastic! lets all hope some more research gets done in this country..

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sarahb71 said on 22 March 2010

hello everybody, i was diagnosed 1yr ago, my gp is very sympathetic, i have been 2 see a nuerologist today he spoke to me as tho is was stupid, i also have m.e, i mimic strokes, it is really frustrating and annoying, but what can u do when there is no cure and your medication doesnt help, its horrible, somedays i cant walk properly, somedays i just sit and cry, i am on doluxetine but they dont seem 2 work, i also ave morphine patches for the pain, they dont work, my gp as told me he cant give me anything else, i also have a underactive thyroid, i would just like to say everybody take care and get the help they need very soon

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SweetChili said on 11 March 2010

I have severe fibro as well as a lot of other problems, but I wanted to say that the DLA have been fantastic! I was awarded within just weeks of my claim! I really don't believe that there is any 'conspiracy' to 'save money' as suggested by someone on here in these comments! I'm sorry that you're having problems claiming, I think it's more to do with the compassion of the person who deals with your claim as well as their own personal attitude towards this horrible illness!

I've also had so many doctors claim that Fibro is 'all in our heads'' and in fact, when I put my DLA claim in I didn't even have a doctor! they didn't use any doctors reports to decide my award, just their own common sense and obvious knowledge of Fibro!

I wish everyone with this illness the very best for the future and I hope you are all as fortunate as I was in having someone with empathy deal with your claim!

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elaineteal said on 21 February 2010

I have been diagnosed with ostioarthritis as well as ffibromyalgia for three years now although for several years before that i just thought i was being silly feeling like this and angry and frustrated because i was trying to do the simplest of tasks and just couldn,t do them.
In reply to AMYEM on the 19th of feb I also am in full time employment ,but things got so bad that my doctor sign me of work as i was unable to cope. My employer thought i was pulling a fast one, you look ok so therefore you must be ok attitude. Employers have an insurance policey taken out on you when you start through your national insurance stamps which in any event that you have an illness like ours, can, through medicals and your doctor, pension you out. This means although you can no longer work you will still recieve 75% of your wages until you retire this is called P.H.I. or P.P.I.. Most people are pushed into resigning due to ill health, but I have a fantastic doctor that told me not to resign as this should be in policy is in place and that they were being totally unresonable.As of next month I will be recieving 75% of my wage and its totally tax free.
Check with your occupational health department (or union if you are in one) they should be able to help. If you go to employees personal health insurance or personal protection insurance on the computer you will find it. Hope this is of help.

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Amber2002 said on 21 February 2010

I was led to this condition based on all of my symptoms. Did what it suggested and went to ask my GP about it. He basically told me I was being silly, it's not a real condition and I should see a psychiatrist about my sleep problems!

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AMYEM said on 19 February 2010

I have suffered with fibro for just over a year now, well i've suffered longer but only been diagnosed for over a year. I work full time but I am really struggling at work and can't afford to finish. My husband works full time. Does anyone know if there are any benefits that I can claim if I finished work.

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AMYEM said on 19 February 2010

I have suffered with fibro for just over a year now, well i've suffered longer but only been diagnosed for over a year. I work full time but I am really struggling at work and can't afford to finish. My husband works full time. Does anyone know if there are any benefits that I can claim if I finished work.

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superwoman said on 16 February 2010

I was diagnosed with fibro 2 1/2 years ago.its been a long road and a life changing illness and i can totally relate to everyone that has written on here.My meds have been changed more than i can remember and now i finally feel i am getting some relief from the various symptoms.I am on lyrica,butran patches,celebrex and duloxetine.i have been really lucky in my gp who knows a lot about fibro-if only i had seen them 15 years ago when i first started to feel unwell!it is a battle and every day is a challenge-i had to leave my job and my family life has suffered but there is light at the end of the tunnel.i was always embarressed to say that i was unwell all the time and used to just say i was fine when i felt awful-but know i am just honest and if im having a bad day i just say.we shouldnt be made to feel awkward,or made to feel we are imagining it all.my family have been great espec hubby-who has to cope with everything when im bad.for anyone who is struggling with their gp-dont give up-change your gp if you have to.
i am lucky that i was awarded dla-i know many fibro sufferers struggle to get it.i do think peoples attitudes are changing slowly-not as quick as we want!
i am really worried about my daughter who is showing all the signs of fibro now-after being unwell the past year.i know the research suggests it runs in families and the thought that she will have to learn to cope with all fibro means is scary-shes only 18.
i hope everyone who has written on here keeps as well as they can,and pushes on when the going gets tough and never gives up.

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ScattyNat said on 04 February 2010

Fibromyalgia Association UK have a list of support groups around the UK. I joined the Medway Support Group last year but due to large numbers we've been asked by their Co-Ordinator to open our own group with assistance from them. I am now on the committee for Fibromyalgia in North Kent, we cover Dartford, Erith, Bexley, Gravesend and towards South East London. Our first official meeting is 17th Feb 130pm-330pm The Church Hall, Christchurch Road, Dartford. DA1 3DH. We have a counsellor for chronic conditions attending to give advice and as we are a new group starting, the more the merrier!! We will have leaflets, a library, raffle to raise funds etc. As other people have discussed, the main thing to remember you are not alone...come to a meeting and you will find a sympathetic ear and members who know EXACTLY what you are feeling...the fatigue, the pain, the frustration that your loved ones cannot (not will not) understand your condition. They see you taking tablets, feeling run down, in pain but you would still rather work yoursself into the ground rather than give up...you will find that seems to be a personality characteristic of Fibro's - perfectionist, stubborn, impatient, always operating at 100mph. I wear a badge at work which says, 'Fibromyalgia - Look Great, Feel Lousy!' Anyway, just thought I'd say hello to all you Fibro's and say chin up!

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pat16 said on 01 February 2010

Hi Jadelana. You sound so down I thought I would just send a small message. I know how you feel thinking a body scan may show up something else but unfortunately they are no use for fibromyalgia. I think we all go through different ideas of things to try because it takes some getting used to having this condition without being able to do anything about it. Keep reading all the other comments - this will show you that you are not alone. Visit the Fibromyalgia sites on the internet if you can get constant access. Keep taking the pills and just take one day at a time. I am on over 20 tablets daily and I know some are on more. I hate having to take every one of them but its the only way for me. They don,t cure the condition but some days make it more easier to cope with than others. Please keep your chin up. Best Wishes

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jadelana said on 27 January 2010

!st time at this!! I esd diagnosed with fibromyalgia 3 years ago, and now at the age of 22 i am still getting no where! my tablets have been constantly changed. I have been deteriating constantly and now dont know where to go. I have asked for a body scan just to check if there is anything else but refused, just wondering if any one else has been able to get scans repeated. At 22 my life has stopped, i have tried different courses but nothing seems to help. i feel like tablets are just getting thrown at me now to shut me up for a while longer, but i am so fed up of this. HELP

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David1978 said on 26 January 2010

Support groups can be found on the following website:

http://www.fibromyalgia-associationuk.org/

When you get to that page, look for the link at the very top called "Groups".

Best wishes,
David

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David1978 said on 26 January 2010

Lexus,
I had a look for a support group near stains, this website of a charity appears to have a list that perhaps would be of some use to you.

http://www.fibromyalgia-associationuk.org/contactsmenu/supportgroups

Good luck.
David

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Judyanne said on 22 January 2010

I have been diagnosed following my visit yesterday to a consultant rheumatologist.
Have felt awful for some time - as if my whole body is going into shut down. Also have immune system problems including underactive thyroid & vitamin B12 deficiency so still undergoing blood tests etc.
My GP is very supportive but I feel guilty about the way my health is affecting my work.
Fatigue is a major problem for me - it comes over me without warning like a wave and I feel as if I am 'out of body' - heavy and unable even to do the simplest task.
I also feel like I am constantly complaining and this makes me feel guilty, I have come to the conclusion that I do this in order to reassure myself that I am not going completely round the bend because the pain & distress I sometimes feel is so real.
It does help to share other people's experiences - thank you for the opportunity to share mine.

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pat16 said on 19 January 2010

In response to Lexus and her need for support. Have you tried getting in touch with the Fibromyalgia UK. When I first started with this condition about 12 years ago now I got a pamplet or some small booklets from them. One of these if I can remember rightly is for your carer/partner to read to help them understand. Trouble is with this condition we don,t understand it ourselves so how can we really expect others to know what we mean. Most of the doctors seem unable to help apart from tablets and another problem is we all have different sympoms with this. Where you say you can still work occassionally I was bound to finish altogether. I have also read on this page that somebody played football so theirs must only be a slight condition. As I have said before I am on over 20 tablets a day and still in pain. Spend a lot of my time either sleeping or fighting to keep awake. Somedays I can hardly walk at all and others I feel so strong and can walk about all day. Try getting your husband to read some of these comments but rest assured it is NOT in your head. I think most of us have had to deal with the medical profession trying to put this point of view to us a one time or another. I think more doctors are now accepting this condition exists but as yet can,t come up with a cure. We need to be pressiing for more research because until a cure is found our lives will never be the same again. Good luck

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Murf said on 17 January 2010

Pregabalin may relieve the worst symptoms

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lexus said on 16 January 2010

I was diagnosed with FM 2 years ago after 2 years of tests and frustration. I work 4 days a week in a secondary all girls school. I have found my school to be extremely supportive, apart from a couple of colleagues raising eyebrows because I've had to leave early or get in bit late...AGAIN!!!
I am so pleased to be able to let all this out at last. I tend to push everyone close to me away and try to deal with this alone. I spend most weekends crying as my partner keeps on with the I don't know what to do...Are you ok...what's wrong now questions. I find my life is bed work bed and what little energy I have left I keep for my 8 year old son. My 2 grandchildren think Nanny's always tired and I end up stressed and depressed as I am not doing anything well anymore. I never have fun, I only seem to laugh in work when I am doing my "act".
I am a positive , optimistic person and I feel I've lost all of that. I could cope better I think if my partner was a little more supportive but supportive with strength behind it. Does anyone know what I mean???
When I told him what was wrong with me it was mixed emotions on my part. Pleased at last I know what's wrong but cared too as the future's an unknown!!
He on the other hand carried on drinking his coffee as we sat outside a well known coffee shop, and said something like oh god that's terrible. Do you want to walk around town a bit you haven't been here before!!!!
That's been about it. Apart from the daily "what can I do to help"
Am I alone in this? I need some support from somewhere as I fear this could be the cause of the end of our relationship. Everyone I've read so far has had lots of support from family and particularly from partners!
Avoid stress they all say....I wish! Life is stressful isn't it?
Also does anyone know of a support group near Staines?
Thank you for allowing this rant!

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Dragonfire2806 said on 14 January 2010

I was dx with firbo about 4 years ago, but im struggiling with meds, For about 2 years everybody said it was in my head and that i was imaganing it, Until i happend apon two very good doctors, one from pain managment clinic, and one happend to be a locam doctor who was very good with fibro. Sadly the locam has moved on,
But alot of my local docs are very quick to say that everything is down to fibro.

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ROURKEY7 said on 05 January 2010

I am a 26 yr old male diagnosed eventually in September 2006 after a year to two year fight. I was taken to hospital in Feb 2005 after falling ill in October 2004. I was then referred to a specialist after leaving full-time work, the specialist did nothing but tap his pen on every visit and the only course of action he was wanting to take was a shrink? This was extremely frustrating, insulting and unhelpful. I finally stopped with the specialist and went to a chiropractic clinic close to were i live. I had just one session lasting just over an hour which cost £36 and i was given a diagnosis with a 96% accuracy? This was then confirmed with my GP. 3 yrs on and i have since april 2008 been working full-time. The battle to get a diagnosis was difficult but once you have the diagnosis you can move forward. Every day is a battle between fatigue and pain but the desire to lead as normal life as possible and the support from my family helps me through. I managed 86mins playing in a charity match at Elland rd for my beloved Leeds United in May 2008 which very nearly killed me but it was all down to a positive mental attitude.
Amytriptyline is all i take my docs dont help but reading up on the illness and staying positive with family does help. Give family, friends and colleagues info on the illness so they can better understand your situation.

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roro said on 02 January 2010

I am suffering from Fibro for 11 years now.I havent been diagnosed properly yet,I will be a further 4 years to wait to see a specialist.I am so glad I have found this site,Its very hard to make people understand how your feeling.I am a hairdresser and due to this illness have had to give it up.I am only 26 years and have been told that I will never be able to work again.This is very disheartening.There is no support system in my area at all,its very frustrating,its very hard to stay positive.The health system is ridiculous.I only know I have this disease for a couple of weeks since I changed my doctor so know very little.I have been told that I should change my diet,can anyone help me on this.
Confused Suffer

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VEJD said on 30 December 2009

Ive suffered with Fibromyalgia for years but as others was blammed on other things, I was getting so angry with everyone saying "having children makes you tired" but as we all know there's a difference between tired and completely exhausted.

Ive tried drugs off the gp they seem to make me feel worse. I found the only way to manage the problem is tryng to think positive and pace myself.

I try to eat healthy, dont drink, do an easy walk everyday, go to bed and get up the same time everyday (not falling a sleep on the sofa at 6pm), try not to get stressed, do stretches morning and night, a hot bath. Well I try to do this but I tell you when I do I feel better.

Live will always be difficult you just have to manage the problem as best as you can, whilst still having a life.

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Karabaglady said on 07 December 2009

Looks like I'm one of the lucky ones. A couple of years ago, having had a blood test was diagnosed with a high rheumatoid count which flagged there was a problem. Having said that, I've suffered the symptoms of FMS since I was a teenager and am now 53! Once diagnosed, I have had a good response from my GP service, although they admit there's little they can do. The drugs I'm on seem to help with the physical/pain symptoms, but do little to alleviate the exhaustion and confusion which comes and goes. I agree with Addyson in that its hard to make your employer take notice when you're having a bad day - especially when you are my age - they seem to think that suddenly (after a career spanning 35 years) I've become thick and forgetful. But keep plugging away - involve your Personnel Dept if you have one - mine have been really supportive.

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Boo4Ross said on 26 November 2009

Ive just been diagnosed with fibro after 8months of falling ill, but have also been diagnosed with lumbar spondylosis (arthritis in lower back). It hasnt been the best 8 months as i was diagnosed with some thing diffrent in the begining, but it did end up my mum payin private 4 me, without her doin so i dont no where id be, she is the 1 who has seen me in pain ive been in not the doctors an when you do try an explain they dont really listen. Im a 25yr old female an have suffered from depression 4 the last 8 an a half years now an its gettin worse, they think the truma in my life may have triggered it off, i lost my son at 7weeks, 8 an half years ago an lost my sister who was 25 3 years ago. My doctor is now thinkin of putin me into a residenial home 4 2weeks 2 have theropey 2 see if that helps in any way, im willin 2 give anything a go just 2 see if helps with my pain. And the 1 thing my doctor has told me thats its not in my head. it would be nice 2 see other doctors doin the same 4 all of you as he has done 4 me, im on medication 4 this an i wear a patch called BUTRANS which releses every hour an change once a week, as well as anatriptoleane (antidepressants) taken 3 a nite. ive also done alot of reseash into this an would like 2 help any of you in anyway i can !!!

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pat16 said on 19 November 2009

Regarding the message from Miss Ebony and her request for a diagnosis. It can take a long time to get this after being referred to a specialist. All they do is have you going every 3months for about a year just taking blood tests every time. They then give you the diagnosis and tell you there is nothing the NHS can do for the condition. So you will just end up where you started on the pain killers etc. as unfortunately there is no cure. I know this is not what you want to hear but I have been trying now for over ten years and all I get is stronger pain killers along the way. Sometimes unfortunately these don,t seem to work at all. I have yet to meet a doctor who seems to believe me when I try time after time to explain how I feel. Keep reading all the other messages on this site and it will help in some small way to know you are not alone.

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Miss Ebony said on 18 November 2009

i am so glad that i have found this site. About 3 years ago i started to get pains all over my body, servre headaches, depression. Going to my GP i was told that its was R.artitis and was treated accordinely. Only this week after having an isotope scan that i was not suffering from Arthritis. The pain gets so bad that i am unable to walk or dress myself. i have just turned 30 and feel like life is already over, when visting my GP and asking to be checked for Fibromyalgia the reply was im not qualified and that Pysio, would help the problem. i feel as though i am banging my head against a brick wall. When checking out the site i realise over 90% applied to me. please i need some help to get diagnoised as my GP thinks that pain killers and anti depressants will solve my pain problems. And the fact that i am constantly confused and extremely forgetful is normal.

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Baj59 said on 13 November 2009

Was just reading through some of the messages. I think anger is a huge part of fibro....always having to explain, sorry, try to explain to people how you are feeling & that because one day you feel "good" does not mean that it's gone or that even that evening you'll still be feeling "good". I work in a pharmacy where I am on my feet most of the time which in itself is hard but to have everyone commenting when I sit to do tasks that don't necessarily require me to stand is very annoying. I was diagnosed 5 years ago & have had a constant battle with management over many things. I fought for a place to sit then find that others complain when I'm allowed to sit, or have a slightly longer break, or use the downstairs toilets as staff facilities are up 3 flights of stairs which I can't make. I have FMS with CFS but refuse to give up my 25 hours a week work...it keeps my brain working & the interaction with people is good for me. I would love to find somewhere in East Sussex that has a support group that meets either on Mon or evenings. Also somewhere that maybe has a really warm pool & aqua aerobics 'specially for people with mobility issues.
Chins up everyone...NHS might one day provide some kind of treatment for FMS!!

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debi39 said on 05 November 2009

at last somewhere i can discuss my illness without fear of being judged.

my story is very similar to many of your stories . . . growing pains as a teen . . . . then new mum problems . . . "lazy" . . . . "just pull yourself together, you can't possibly be in pain all the time" . . . blah blah blah.

My fiercest critic over the years has been my mum. She always worked, never took a sick day in over 30 years as a civil servant. Well, I always worked too, sure there were many job changes due to illness that I never understood, but I always went straight into a job as soon as I was feeling better each time.

I can clearly remember many days, over the years, when I would wonder what it must feel like to "feel normal" to not wake each morning feeling exhausted, or in pain, or to go to bed at night and for sleep to find you easily.

oooh! sooo good to say (write) all that

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smukke said on 02 November 2009

Same as everyone here no help no sympathy no treatment no hope. I started to experience extreme pain and fatigue at 12yrs told it was growing pains later it was pregnancy later still all in my mind, was not taken seriously until I developed iritis but this was short lived I am now not only left to be housebound I am now also being left to go blind! there must be some sort of treatment for the cause because as you all have discovered there is little comfort in the treatment of the symptoms. As for benefits it is just applying , being turned down and appealing don't give up and get someone from a charity organization to back you up as you all know without backup no one will listen to you! I think we need to band together and fight for equal rights to research, treatment and prevention I no longer want to be made to feel second class looked down upon, I am only 36 I want the right to education work and the benefits enjoyed by people with disabilities that are recognized and taken seriously. I am tired of jumping through hoops and constantly explaining myself. I believe that now I am actually really angry as the latest excuse for my condition is stress!!!
Kind regards to all:) Jo.






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Addyson said on 01 November 2009

For years I have suffered from stomach problems and waking up in agony in the morning. Some mornings I felt virtually paralysed as the pain in my back and round my torso was so bad I was scared to move. About 4 years ago I was off work with a viral infection, it as awful and the pain increased. I was so tired and could hardly do anything at all, I had dizzy spells so I could not even drive a car. My doc referred me to a specialist who diagnosed me with FM, imagine my despair when I found out there was no cure. The specialist just said I had FM and gave me leaflets. That was it. Recently, for the last 6mths, I have been experiencing dizzy spells again, even worse I now find myself experiencing Fibro fog. I have a bad memory, become very confused, cannot concentrate. I have become increasingly stressed out and depressed due to my work. I work in banking, customer and sales advisor. The bank I work for is obsessed with sales, I find this very difficult due to FM fibro fog. I even have difficulty spelling and have to double check everything. My manager cannot understand the way I feel. I feel physically sick going to work most mornings, this increases the stress I am under which in turn makes my condition worse. I work full time and my day consists of bed, work,bed. I don't know how to escape from this as due to FM I feel restricted to the jobs I can do. I have been told to basically get on with the job or leave. I feel really panicky and I sometimes feel like just walking out, I really cannot cope with this and I feel my employer is not helping me in the least with this. It is really annoying and frustrating as I feel if I had a disability that could be seen they would be more helpful. Has anyone else came up against this? I came across the website by chance. I am so glad that the members on the site know the difficulties we face. Two of the doc's at my practice don't recognise FM, so annoying.

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Always in PAIN said on 24 October 2009

It is reasurring to know that I am not alone in this matter. I am currently seeing a Rhumatologist, and awaiting my test results from lab and x-ray's. I am 27 and I have been feeling horrible for the last 8 years. I have been told many times from Doc's that there is nothing wrong and for me to deal with it. Finally after seeking help from doctor's one listened to what I had to say. They have been testing me for Rhumatoid Arthritis because I also suffer from Iritis of the "eye". I have been trying to explain to doctor's for ever that I think and feel that I suffer from FMS (Fibromyalgia). Hopefully soon I will have the answere's I am looking for, my follow up apt. is November 3/09.

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Hideous said on 04 October 2009

Just tried to comment but did not work so here I go again!!
I am housebound due to FM and hip problems. My doc says there is nothing else he can do. I have tried lots of drugs etc but now just take high blood pressure meds and morphine.
Is this correct?
I have not been out since May this year and have no-one living near me.
I am not depressed but my world has shrunk beyond belief - bed, couch, bed.
I lost my job earlier this year due to the illness so I'm on benefits and will lose my house next year when I have to start paying my mortgage again.
Anyone know if there is any help out there for the over 25's and under 60's? x

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purplewheels said on 03 October 2009

I understand that more is to be done to recognise Fibromyalgia as a chronic illness, maybe it will finally be taken seriously.

I have had FMS since 2000 but was only diagnosed in 2003. I was told by the rheumatologist 'You have Fibromyalgia, you'll just have to learn to live with it' - she then discharged me and so I am seeing no doctor at all, it's pathetic.
I have an appt with a pain clinic (at last) on 6 October and I'm hoping they will refer me to a specialist for FMS.

I am always afraid that because I am not under the care of a consultant, they will not take the condition seriously when I re-apply for DLA later this week.

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bevvybee said on 02 October 2009

I've just stumbled on this site and i'm so glad i did. I've had fibro for nearly 19 years and in that time i think i must have read everything there is to say on the subject. Yet the only thing that really helps is reading how other people are affected. Knowing you're not alone in this is the only comforting thought., that there are people out there who understand the misery of this condition. It's amazing how we all seem to suffer the same symptoms ,yet the doctors have so much trouble putting the pieces together.I can't remember how many times i've seen that certain look come over a drs face followed by an instruction to keep taking the tablets. Fat lot of good they do. The last 3 years have been hell.I keep going for my children, but when they leave home i'm terrified that i'll just give up. Fibro is so isolating. I find myself becoming qiueter and more alone daily. There's no sponteneity any more.No fun. Sorry to moan but it feels good to unburden myself to the only people who will understand.

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mlheath000 said on 01 October 2009

I think that after reading everyones comments there is a definate pattern. Nobody is listening or taking FM SUFFERERS seriously. From my early childhood i was told it was growing pains. Early 20's just something young mums have to put up with. I even had the water and building checked over where I worked by the waterboard and building inspectors only to be told It was sick building syndrome. Now at the age of 43, I was finally diagnosed 3 years ago, I am awaiting yet another tribunal and am quite sick and tired, that isn't even a joke, of jumping through hoops because the powers that be say I have to. Just typing this has taken me half an hour and zapped the last off the energy I had. Just 1 of my conditions is OCD so I have to make sure there are no errors lol. Medication does not work for me at all. Massage, hot baths (when I have someone who can help me) heat/cold pads, not getting to hot or too cold, no strong smells no noises which can trigger headaches or put me off balance. No stress (haha) No local group which I think would help. Doctors, I find, generally just want to drug you up to the eyballs and send you on your way and the powers that be do not understand when you say medication does not work aghhhhhh Something has to be done to take us more seriously.

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pat16 said on 12 September 2009

I would like to say that SusieBlue is possibly right for people who can attend a group may benefit but in a lot of areas these groups don,t exist. Also it all depends on the way Fibromyalgia affects the individual. Most days I can,t even get to my gate and even on the few times I can manage to get out I have to rely on others taking me and then it as to be all arranged as to how I am on that day. I can,t make arrangements and know for certain I could keep them. I have joined a group which have meetings every month but about ten miles from my home. I do however receive correspondance from them which helps to know I am not alone. I also had a husband who was very supportive but since he died 5 years ago I have to struggle on taking every day as it comes. I am very lucky as friends call in regularly to see me and I haven,t lost my sense of humour at all. There is always somebody worse off than myself and I keep reminding myself of that. It,s just that if only this constant pain and the trembling weakness would go away how grateful I would be. Best Wishes to you all

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SusieBlue said on 08 September 2009

I think many of you would benefit from going along to a local Fibromyalgia support group.

I first attended after having Fibro for a year. Hitting the year milestone was a brickwall for me. I had tried everything except going to a support group. I was expecting a lot of old women to be moaning about their symptyoms. My local group has both men and women and ages range from 22 to 70s.

Here is an example of how talking to others can help:
I work part time in a chemist. A 30 year old lady came in with a prescription for amitriptyline. She says "what will this do?" And i asked what she had been precsribed it for.

"I've just been diagnosed with Fibromyalgia, i don't really know what it means. I feel drunk all the time, uncoordinated, forget my words and i'm not sleeping. I'm struggling at work and then exhausted and useless on my day off..."

"I understand, " i say, "I have Fibromyalgia too"

"Really, but you wouldn't know it to look at us"

She then started firing questions about all these various symptoms and i confirmed they were all part of Fibromyalgia syndrome.

She started to cry BECAUSE I UNDERSTOOD 100% what she had been going through for the past two years. The elation at finally being diagnosed swiftly followed by the blow that there is currently no cure.

I have recommended our local support group to her because I could see the benefit of talking through the symptoms and I even managed to make her laugh at our shared problems.

This is where the support group comes in. Her husband could not have been more supportive of her. Support groups give support not only to the "Fibromite" but also to the family, friends and carers. And can provide the depth of understanding that i need and i can't get from my family alone.

And remember it never hurts to have a few more friends.

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Pimmy said on 28 August 2009

Firstly I'd like ot say how relived I am to find other people have the same condition as myself - not that I'd wish this on anybody as it's an awful thing to have to cope with on a daily basis. I have had FM for approx 10/12 years and my syptoms continue to worsen. I too have had to leave work and I am in a period of transition - not knowing if I can find and hold down a part time job and manage my syptoms or just "giving up and giving in to FM" (which is how I feel most of the time!) I live alone and find it difficult to explain to friends/family members how I feel as I'm fed up with myself moaning constantly. I find that I'm becoming more and more isolated as the pain and discomfort makes me quiet and miserable. I recently went ot see my daughter who lives in Mexico and my time there was spoiled due to pain and exhaustion. I'm on a cocktail of drugs which bring their own problems. So, basically just wanted to say "Thanks" to all those who have posted comments on this page - at least I know I'm not alone!

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DerekStainsby said on 18 August 2009

I work as a professional welfare rights adviser for a housing association and my wife has fibromyalgia. She has not worked for several years and receives incapacity benefit.

I can confidently say that if you claim incapacity benefit (now replaced by employment and support allowance) or disability living allowance, there is a good chance you will be refused, but there is an equally good chance that the decision will be overturned if you appeal to a Tribunal.

The chances of a successful appeal to a Tribunal are much higher if you are represented by a competent welfare rights adviser. .

It is possible, though admittedly difficult, to win an appeal without a medical report to support your case, but you probably wont manage that one without good professional representation. Contact your local Citizens Advice Bureau or Law Centre

There are a number of so called independent advisers and websites offering to take your case on for a fee that could be as much as 20% of any backpayment you receive, or alternatively offering advice via a premium rate phone line costing £1.50 per minute. Dont use any of them. They are a rip off.

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fenline3 said on 16 August 2009

I can relate to you all. I'm certainly not the only one to feel like you do. I hurt all over and my skin hurts which others think I'm mad. I have had FB for 3yrs and also have Systemic Lupus Erythematosus. I'm only 34 and have 3children plus 2 step-children and also feel like a burden to my family and tend to push them away but without them I would not force myself to get up in morning! I do spend most of my time in bed but I do try to move as much as I can. I 'm on a cocktail of drugs, approx 30 tabs a day! Mainly painkillers. I tend to take each day as it comes. It is very hard to plan ahead as some days I cannot move at all! I used to go out with my husband socially, walk 4miles a day, cycle etc now I can barely walk 4yards! I also have weight issues I stopped smoking, stopped moving and started steriods, my depression is even more fuelled. When I mentioned my 'fibro fog' to my GP she just laughed and said she had never heard of it! I have a very understanding rheumatologist, which helps. I also have suffered from depression for quite some time and have also been fobbed off by various doctors that it's my depression, I suffer with 'blackouts' too, they happen when I get 'overtired'. I know it's difficult but try to keep you chin up and keep fighting!!!! that's all we can do and take each day as it comes.

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pat16 said on 10 August 2009

I have just joined this web site after reading all the comments regarding Fibromyalgia. I have to say I agree with everything that as been written. I was diagnosed over ten years ago and since then I haven,t been able to lead any kind of life at all. I take over twenty different pain killers daily and then find life a struggle. I have seen various doctor,s over the years but I still don,t think any of them really understand what I am trying to say. They just tell me there is no cure and speak of the condition in a matter of fact kind of way. I sometimes feel I have just been left to rot and fobbed off with excuses. I know its not in my head but I feel the doctors think it is. I lost a very good job through this and I am practically housebound these days having to rely on family to take me to places. I cannot make an appointment with a dentist or optician and guarantee on the day I will be able to make it. This can get very frustrating. This year so far I have made a two visits to the dentist,s (had to cancel another on the morning it was due) but if you don,t go for these appointments you can get struck off the register and left without a dentist at all. I also made a visit to the opticians again with the help of family. I wish also like one of the users said there was a list of GP,s who do recognise this condition. I know the health service is short of money and I have spent hundreds of my own trying to get better but there must be a person who could visit or could be contacted to discuss the problems faced and to see if there is anyway around them. Although I wouldn,t wish this condition on anybody it is nice to hear I am not on my own and lets hope between us we can get some results.

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wife and mother said on 10 August 2009

I have Fibromyalgia and the discs in my spine have worn and I don’t know what to do . I hurt all over my skin is sore all over I ache all over and all my body feels so heavy when I have to move it is so much effort. I used to try and bear it but for the past few months I cant do this now. I have been to the gp and go Tramadol 200mg slow release bd, Fentanyl 40mg patches and 4oomg lozenges three times a day ( but I take more so they will run out early). I have paracetamol and temazepam. but these drugs does not do anything any more. I have tried all the pain killers and antidepressants. I get big waves of depression all the time and I am crying all the time for no reason. My husband is great but I cant talk to him any longer because he doesn’t know what to do. There is nothing I can say. We don’t go out - he goes fishing because I want him to go somewhere but I cant go out because it hurts too much. I feel awful and guilty that I am stopping him doing things and having fun. We never laugh together. Nothing is fun. My gp cant give me anything else. I went to the pain clinic a few weeks ago and had a lignicaine infusion but it has done nothing and there was nothing else he could offer. My children are away for a few days. For months I have been pretending I am coping when I am not because I don’t want to burden them but I don’t think I can pretend when they come back and it feels like a great big burden waiting for them. I just feel like going to bed and not moving. It hurts it move to wash, to brush my hair. There is no one left to go to and nothing anyone can give me and I am too worn out to fight any thing any more.

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nannycar said on 04 August 2009

being a fibro sufferer is hard people dont understand the pain which is constant, i understand the cant get out of bed days, the mood swings and snappy bouts but we're not lazy or mad all we want is some proper HELP!!!!!!!

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meggy68 said on 29 July 2009

Well, I have had fibromyalgia since I was 16 and only diagnosed when in my 20s and suffered so much pain until then, when at last I did get some tablets that helped me manage the condition more. You do have to pace yourself and try to exercise to help strengthen your muscles, no pain no gain and believe me you do get sore when you exercise at first but it does help!/?
With regards to benefits I have applied in the past for dla only to be turned down! I work part time now for 4 days a week with mid week day off which I find helpful to my condition now I am 41. I still find you can not get any help with complimentary medicing like massage, accupuncture and it has literally cost me thousands over the years. I have now married to a very understanding husband whom I met 3 yrs ago and am lucky to have but can not have kids now which I feel may have been nice if I had been a bit younger, and pre my hysterectomy 5 yrs ago. Never mind I am happy with my lot but still people dont understand this condition as it is hidden inside the body! We need more help from the government with treatments perhaps they could allocate each sufferer so much treatment per year even if it is once a week massage or alternative medicines including accupuncture etc etc I just dont know. I have tried everything! I give up and try to enjoy my life even tho I get chronic fatigue too. Would love to hear from like minded sufferers or government or health professionals or benefits advisors re entitlements. Mrs Hesketh

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User295669 said on 20 July 2009

Hi, can anyone please give me some feed back on my situation? 5 years ago, I began to have stomach pain which the doctor said was stress related. Gradually it got worse around November 2006 and in January 2007, I had a viral infection which I have never gotten over properly. Since then I had another 12 viral infections and countless throat and chest infections. In June 2007, a blood test revealed I had helicobacter and since then I have had three rounds of combination treatment. In the meantime, my body has gone down hill. I ache all the time and if I get cold or catch a chill I am in agony. I ache all over especially my lower legs, pelvis and lower arms, my periods are worse, I get regular sore throats, headaches and even suffer depression…maybe the worst of all is I find it hard to concentrate and think properly and know people are starting to think of me as stupid. My doctor is reluctant to do anything but did suggest a few months ago I may have fibromyalgia. Since then, I have started to see another doctor at the practice who is quite attentive. I am getting repeat ESR blood tests for some reason and he prescribed Robaxin and signed my sickline as Myalgia. I havent taken the Robaxin yet as I don’t know whats happening to me. I can barely walk up stairs and even my hands hurt. Does anyone have any thoughts, please?

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Lethe said on 19 July 2009

whilst chronic pain and it's validity may be a choice for the attending physician, it is unfortunately not a choice or an experience of choice for the patient.

Validation of an experience is a good starting point for a successful physician patient partnership and ultimately a healthier happier patient.

Wake up GPs. Patients are consumers, we know our rights and we know how to exercise them. The BMA and the royal college of physicians are doing themselves a great disservice by discounting the rights of a generation of men and women this can only lead to further health inequalities across the population and for the next generation.

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jennypc said on 17 July 2009

try the proff at guys hospital in london, after just one consultation he knew what i was talking about, he goes on the study that this is not a rheumatology problm but that the brain is sending the wrong signals to nerve endings hence the painful reaction to touch or bangs, also the reason for restless legs at night and sleepless nights which means no refreshing sleep mode, so more pain, its worth a try,

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G.ALAM said on 14 July 2009

Hi susan
I read your article and responses, i found it a relief to know there are other people that understand what impact FM has on a person and their family. I also noticed that all your responses were from FM sufferers. I am too a single parent of five, I am currently trying to do a diploma, but continually find it a challenge to concentrate. My interactions with family have rapidly decreased, causing me to be at battles with becoming dependent on them. I have refused to take tablets for a long time because i felt nothing was working and they were probably doing more harm than good, I have tried most of the above, along with diazipan, but found i was sleeping most of the time, and i needed my brain to function,but now my pain is at its peak, i feel i cant turn to DLA because they ask for doctors reports, and mine say i haven't been taking anything. I have just been suffering silently reading up on the latest treatments hoping the NHS will take FM sufferers seriously and find a cure, rather than trying to hoplessly relieve the symptoms.

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Mosey said on 01 July 2009

I have had fibromyalgia since i was 39, diagnosed at 44 and I struggled to work for over 4 years with this condition and I think made it worse. I was nearly crippled with pain and would go to work come home go to bed that was my life. I had to finish work eventually. The only pain relief I have found to help is being on 450mg of Pregabalin (Lyrica). Nothing else touches it. I have tried all the alternative remedies, guided imagery, you name it, I have tried it -s and spent a small fortune. Pregabalin helped me have a better quality of life i.e. less pain, but it is not a cure. I feel as though I have part of my life back. My GP recognises this illness and is very good with me but I know others who are not.
Mo

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XXXX said on 14 June 2009

My family and I have for years been denied thousands of £'s in benefits because of my fibromyalgia and it's associated conditions as well as other problems due to collusion by doctors, the DWP and the Tribunal Service. This is all part of a deliberate government health policy not to activlely recognise this condition, or it's impact upon the sufferer, their family, or society and thereby minimise it's financial burden. This of course in no way effects their ability to claim expenses at our expense.
NB By government I include all of those elected to Parliament and their upper house lacky's in the Lords

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jaylyn said on 31 May 2009

I am writing this for the second time not sure what happened to the last one. I am a suffera of years now and untill the past 2 years I have struggled and struggledto work a full time job . I had a relapse last year and was of for 12 weeks . I returned back to work on less hours and suposidly light duties. I am now at the stage wear I was 7 to 8 months ago on a scaleof 1 to 10 pain it is bordering 8/9 and I am not sure what to do. I feel I am not getting any better with the work load can anyone advise me on the what to doI would be abliged. I am a singlemumof a 15 year old lad who is border line ADHD as well so I am trying to deal with that as well please has anyone got any ideas please let me know .

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jaylyn said on 31 May 2009

I am looking for some help . I was diognosed 4 years ago with fibro and I have been working since then . I have had to go down on my hours since I had 3 months of last year as I found I could not do the work . I am now 7months back at work and I am strugling to do most days under alot of pain with taking all the drugs and morphine it has now come unbearable what do I do .I have a 15 year old son to support please if anyone can suggest or put me on the right road . I need some help please.
Jaylyn

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TheDragonlady said on 30 May 2009

i am 38 and have been suffering for many years with an 'undiagnosed (& supposedly undiagnosable)condition'. i have done loads of my own investigating into this condition as it kept being mentioned to me after M.S. & most others were 'discounted'- cant think of the word i want (another unfortunate symptom). i had to change to another gp when i moved house it was the best thing i ever had to do. some people find that pain clinics are good (ive been to one) & there is a brilliant book called ' Fibromyalgia a guide to the first year' by Claudia Craig Marek it costs appx £9.99 but is in most librarys, other than that 'pace yourself' easier said than done i know but its worth it, also help is on the FMA uk site try that xxxx

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branson1 said on 30 May 2009

How do you get this recognised when you have had mental health issues? My GP and Hospital just put everything down to my history of this.
I was physically healthy till i collapsed with clots on lungs and got knocked out. After this i had chronic pain in legs and spine, my skin was sore to touch.
The pain stopped mobility and caused weight problems. I was also given amitryptolin with cocktail of pain relief and left to get on with it. Weight causes more pain meaning less mobility which can't be shifted and am stuck in a viscious loop and no one to believe it any thing except mental health stress on the brain.
Am fed up of popping the 8 different meds at 38 years of age. I am a single parent of 4 with a grandchild i cannot enjoy due to the pain etc.
If any one has any helpful advise i would appreciate it very much as 'this is not living, just exsisting which increases the depression.
Help!!!

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andrew62x said on 18 May 2009

I have been suffering from this condition for over 5 years now and at first i too was being fobbed off by my GP! so i changed doctors too. My new doctor was great she sat down and listened to what i had to say and made what i would say as being the best choice. I was sent to hospital and the doctor i saw there diagnosed my condition. DONT SIT AND SUFFER IN SILENCE go to see your GP and get to the bottom of it

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scotty1 said on 17 May 2009

Change your GP! if they dismiss fibromyalgia change your gp to one that does ive just changed mine my gp fobbed me off with amitriptilene for 2 years fibromyalgia is the doctors way out off fobbing patients off when blood tests return clear-demand further investigation into hypo and hyper thyroidism hormonal imbalances endocrine etc try anti inflammatory diet-DONT BE FOBBED OF BY GP! FIBROMYALGIA IS REAL!

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dragonfly said on 16 May 2009

Until I read this article I did not know there was any treatment available. Wonder if my GP knows what it is - have been told so many times that it will just 'go away'!

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User260315 said on 16 May 2009

It would be nice to see which Doctors (GP's) recognise this syndrome, as all Doctors dont do this!

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