Fibromyalgia - NHS Choices

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

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

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.

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

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.

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.

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.

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

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.

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

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.

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!

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
:-)

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

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.

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

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

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 ???

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

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?

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.

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.

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

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.

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.

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

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

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.

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.

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

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

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

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.

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.

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.

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.

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

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

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

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

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

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.

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?

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.

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?

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.

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 .

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.

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.

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

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?

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

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.!!!

fibro13 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!

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

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.

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?

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 :(

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.

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.

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.

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.

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.

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.

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?

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?

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!!

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.

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

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

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

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.

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.

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

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!

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.

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!!!

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.

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

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

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.

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

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.

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

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?

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.

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.

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.

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

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.

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

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!

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

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.

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.......

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!!!!!!!! :-(.......................

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.

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.!!!

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

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)

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.

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.

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!

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!

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.

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.

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

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.

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 li

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