Fibromyalgia

Introduction

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

Fibromyalgia is a chronic condition that causes pain all over the body. The condition affects the muscles, tendons and ligaments (bands of tissue that connect bone to bone), resulting in widespread pain, fatigue and extreme sensitivity to pain.

The name fibromyalgia comes from the Latin word 'fibro', meaning fibrous tissues (tendons, ligaments), 'my' meaning muscles, and 'algia' meaning pain.

Fibromyalgia used to be known as fibrositis, which literally means inflammation of the muscles and soft tissue. However, the condition was renamed fibromyalgia after studies found that there is no inflammation or nerve injury

Who is affected by fibromyalgia?

Anyone can develop fibromyalgia, although the condition affects more women than men. In most cases, fibromyalgia occurs between 35-60 years of age, but it can develop in people of any age, including children and the elderly.

The number of people with fibromyalgia has never been measured, but it is thought that between 2 and 4.5% of people in the UK have the condition.

There is no cure for fibromyalgia, but treatment aims to ease the symptoms. The condition can be treated using a combination of medicines, complementary therapies and lifestyle changes.

show glossary terms

Chronic

Chronic usually means a condition that continues for a long time or keeps coming back.

Pain

Pain is an unpleasant physical or emotional feeling that your body produces as a warning sign that it has been damaged.

Tendons

A tendon is a tough cord of tissue which connects muscle to bone.

Ligaments

Ligaments are made of fibrous tissue. They connect bone to bone, providing support while allowing flexibility and movement.

Tissue

Body tissue is made up of groups of cells that perform a specific job, such as protecting the body against infection, producing movement or storing fat.

Fatigue

Fatigue is extreme tiredness and lack of energy.

Inflammation

Inflammation is the body's response to infection, irritation or injury, which causes redness, swelling, pain and sometimes a feeling of heat in the affected area.

Last reviewed: 10/07/2008

Next review due: 10/07/2010

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49 Comments about ‘Introduction’

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ScattyNat said on 04 February 2010

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

pat16 said on 01 February 2010

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

jadelana said on 27 January 2010

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

David1978 said on 26 January 2010

Support groups can be found on the following website:

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

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

Best wishes,
David

David1978 said on 26 January 2010

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

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

Good luck.
David

Judyanne said on 22 January 2010

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

pat16 said on 19 January 2010

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

Murf said on 17 January 2010

Pregabalin may relieve the worst symptoms

lexus said on 16 January 2010

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

Dragonfire2806 said on 14 January 2010

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

ROURKEY7 said on 05 January 2010

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

roro said on 02 January 2010

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

VEJD said on 30 December 2009

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

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

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

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

Karabaglady said on 07 December 2009

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

Boo4Ross said on 26 November 2009

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

pat16 said on 19 November 2009

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

Miss Ebony said on 18 November 2009

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

Baj59 said on 13 November 2009

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

debi39 said on 05 November 2009

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

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

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

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

oooh! sooo good to say (write) all that

smukke said on 02 November 2009

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

Addyson said on 01 November 2009

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

Always in PAIN said on 24 October 2009

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

Hideous said on 04 October 2009

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

purplewheels said on 03 October 2009

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

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

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

bevvybee said on 02 October 2009

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

mlheath000 said on 01 October 2009

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

pat16 said on 12 September 2009

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

SusieBlue said on 08 September 2009

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

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

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

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

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

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

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

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

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

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

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

Pimmy said on 28 August 2009

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

DerekStainsby said on 18 August 2009

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

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

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

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

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

fenline3 said on 16 August 2009

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

pat16 said on 10 August 2009

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

wife and mother said on 10 August 2009

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

nannycar said on 04 August 2009

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

meggy68 said on 29 July 2009

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

User295669 said on 20 July 2009

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

Lethe said on 19 July 2009

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

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

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

jennypc said on 17 July 2009

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

G.ALAM said on 14 July 2009

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

Mosey said on 01 July 2009

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

XXXX said on 14 June 2009

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

jaylyn said on 31 May 2009

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

jaylyn said on 31 May 2009

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

TheDragonlady said on 30 May 2009

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

branson1 said on 30 May 2009

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

andrew62x said on 18 May 2009

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

scotty1 said on 17 May 2009

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

dragonfly said on 16 May 2009

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

User260315 said on 16 May 2009

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

Introduction

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Who is affected by fibromyalgia?

Chronic

Pain

Tendons

Ligaments

Tissue

Fatigue

Inflammation

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Lethe said on 19 July 2009

jennypc said on 17 July 2009

G.ALAM said on 14 July 2009

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XXXX said on 14 June 2009

jaylyn said on 31 May 2009

jaylyn said on 31 May 2009

TheDragonlady said on 30 May 2009

branson1 said on 30 May 2009

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