Fibromyalgia

jason wilmer, about 1 month

i have recently been diagnosed with fms.it took me about 7 years to get a firm diagnoses.it started with the typical symtoms that fms seems to throw at you.pain flitting from joint to joint tingling pins and needles in hands and feet. whent to drs and had all the usual tests and nothing seems to show which is very frustrating.as this diesese progresses.the symptoms are endless to name just a few i have got puffy hands swollen ankles i get chronic neck shoulder lower back knee ankles elbows pain just about everywhere . beleive me no part of the body is immune from pain then there is the unusual symptoms that arise like ear problems that seem to continue even after surgery. i get face jaw head pain swollen lymph nodes tooth pain that continues even after a root filling then there is the feeling down and also the memory blanks that i can experiance daily. before diagnoses i did think what was wrong with me but since diagnoses it does all seem to fit into place. i do beleive it does help with having a diagnoses to understand what is actualy going on with my body.sometimes people do not think there is anything wrong with you because the pain is not visable. and you do not always mention when you have the pains as you would be forever telling your family constantly. and you feel like you are a hypocondriact. i now have my families support who now understand this awfull condition.

Amy Burton,24 mum of 23month old, about 1 month

i to had to endure numerous tests before i was refured to a very understanding specialist in rhumatology who gave me further tests then my diagnosis of fibromyalgia,he has further refured me to a pain management hospital for ongoing treatment and support(i havent been yet).i am currently too ill to work and have been out of work now 3 months due to my FM,the little energy i manage to saver is spent on my rather demanding wonderful 23 month old son,however most days i need help with looking after him and my home from my parents(im very lucky iv got them,they understand)returning to my job is at the moment out of the question so in order to hold the fort up im claimimg employment and support allowance,my problem is every few weeks im having to provide new sick notes as proof of illness(even tho iv been diagnosed)but can never see the same GP twice as they appear to be all locum doctors which means constantly re-explaining my who FM history and almost having to convince these sceptical doctors that i really am stuggling to cope with my home life let alone returning to work,on top of not having a single understanding GP i now have to attend a "fittness for work test" all the stress and presure of trying to prove i need the financial help is making my illness far worse,i dont know how ill even get to a fittness test let alone perform one.any advise on how to find a understanding doctor? please share xx thank you amy :)

Angela Jordan, 9 months

I have had fibromyalia for 15 years now, it varies from day to day and can make me bed ridden. I continue to work self employed, when I am able and getting out and about and mixing with others takes my mind off myself. I assess health and social care in nursing and residential homes and have found others worse off then myself, this seems to inspire me to get going and keep going. I am over weight due to lack of exercise, my job takes me out of my car and then sat behind a desk for most of the day. I have sitting and standing tolerences and needs to move to avoid becoming stiff. I had an accident at work in 1993 which seemed to be the start of my symtoms, and gradually over the years the pain has varied around my body initially starting in my back. The brain fog leaves my memory poor and I take pleasure in nature and little victories. I have trigger point and use a massage called La Stones to help reduce pain. The heat of the stones penitrates deeper to relief stiffness and pain, I can recommend it. I look at eating healthy and remaining mobile, swimming was very useful but I have a 3 year old now and am not able to get as often as I would like. He is in nursery, I couldn't manage him all day every day, but he gives me hope and a reason to concertrate on the good things in life, so I am very lucky that I do not have depression. I did a course once called building on the positives, I have found this useful, to focus on the things that I have and not the things I have not. The home that I visit have elderly clients who advocate counting your blessing, I supose that what I've tried to do. Some days I win and other are more challenging, but I'm still in the game and that's what counts. I wish all of you all that have written here, well! We all have different stories, and all deserve to be heard,I have stopped looking for advice and started listening to me, I am lucky to have a very understanding Doctor, although I rarely visit, I rarely take my repeat prescription, and do what I can when I can, and listen to myself.

diane, 10 months

hi im diane im 45 and i have been diagnosed with fibromylagia for about a year, i have been turned down for dla though this illness has severly disabled me, i have a appeal on monday and was hoping someone could give me some advice as to what i have to say or do, i wish they would put me under oath as i am not pretending i have a illness i am really ill so im not scared of telling them the truth what i am scared of is them not believing me.... any advice would be helpful xx

Andy Streater, 12 months

I have had constant pain for over 20 years, I have always been told it's Arthritis, my last Orthopedic visit I was told it's Fibromyalgia. I have Butrans pain patches, which work better then codeine, Gabapentin, Baclofen to relax the muscles and Zopiclone to help me sleep. I am 43 now and unable to work, I had to quit about 5 years ago, because of the often intense pain and the extreme tiredness. I never sleep for more than 3 hours at night, generally 2 hours before waking in pain or sweats etc. I have burning sensations in my back and legs especially at night, numbness and tingling in many areas mainly my legs and feet. I find it very depressing especially since losing my wife 6 months ago, she used to cheer me up and keep me going. Because I look reasonably well when I go out people don't realise what I feel like, I don't go out when I'm very sick or tired it's too difficult, some doctors in the past have mis-diagnosed or tried to say it's mainly in my mind. It's a bit of a releif to finally know what's wrong, although my own GP has always supported me, just to know that other people also feel the same, I'm not the only one and I'm not crazy. Andy

Graham K, about 1 year

Hi My wife has been diagnosed with Fibromyalgia and i am always being told i do not relise what she is going through i have read about it on many different sites and although i really understand the pain she must be going through i am finding hard to help her cope.has anybody got any advice

noddy, about 1 year

hi i got dianosed with soft tissue rhumatism last month could anyone tell me if its the same as fibro

Anne Harborne, about 1 year

I was formally diagnosed as having F.M.S 2 years ago but for the 4 years previously I had kept on saying to my husband 'I hurt all over' but could not really explain how I felt. I was relieved when I was told what was wrong as it confirmed that I was not imagining it. I have had to give up working as I cannot deal with the tiredness and pain, some days I really do not want to get out of bed. I am now on Incapacity Benefit and have applied for D.L.A but have been refused, I am appealing but I have been informed that it is unlikely that I will get it as they are trying to get people off these benefits. Fibromyalgia is a hidden condition, people cannot see it and therefore do not accept it.

Vanessa Bigwood, about 1 year

I was diagnosed last September with Myelodysplasia & Fibromyalgia at the same time, both illnesses have similar symptoms, so all the years I have been getting depressed, been in pain (I always used to take so much pain) but it is finally wearing me down, I take Co-codamol, I was taking them like sweets, I try not to take them now unless I am really struggling, also i take Amtitriptlene which does help me sleep I used to get at least 6 hours sleep, but it only seems to last for 4 now, also I feel fuzzy headed for the whole of the next morning. I am so tired, not sleeping etc, has all been because of this. I have just found a local Fibromyalgia group, rang the number and found a lovely helpful lady who has given me advice regarding Help and who to see, as my work has been affected, I struggle, I am constantly stressed, irritable and angry at work, cannot sleep because my legs hurt so much and am so tired. I have to have blood transfusions every 3 months for the Myelodysplasia, so I am going to CAB for advice tomorrow I now know I do not have to suffer in silence I can get help and also I am going to meet her and some other sufferers next week.

nicola lawson, about 1 year

hello my name is nicky and i thinnk i am depresed but i dont want to go to my doctors as i do not want to take medication i lost my grandad and my birthday was after his cremation and ever since then i feel not normal tierd not wanting to hear noise i just at a loose end my partner does not help i have to cook clean look after kids and i have had no time to take in the loss all i get is or you are ok you are strong i aint please can you help

justina nash, about 1 year

i think i might have fibromyalgia but have been going to the doctor for about a year and i get the impression he thinks i'm making my simptoms up.i get painful areas all the time , i have memory loss, tiredness ,weight gain ,painfull periods infact i have nearly all the symptoms but only have pain at a few of the pressure points.I was also diagnosed with a hearing problem 8 weeks ago they are not sure what so have to see a ENT spesialist tomorrow but they did say they think it could be to do with the nerves behind my ear thats why my ears hear the slightest background noise and in turn i cant hear what i'm trying to listen to.does anyone have any advice to give me.thanks justina

Karen, about 1 year

I have had fibromyalgia for the last 4 years. My dr is verry understanding and reffered me to rhumatology and a pain clinic. The only thing that i have found to help me, is to learn to take things slowly, do bits at a time and listen to my body pain. The most important thing is to rest when needed. I take amiltryptaline to help me sleep, the only trouble is when i do sleep, i dont move enough with this drug. Is there a drug out there that will help me sleep and allow me to move at the same time, so i dont wake up as stiff . I still keep as active as i can but most of the time my pain and tiredness is so bad i have to give in and rest. most of my pain is in my legs feet ribs and back. I allso get verry confused. I also have pain in the side of my head at times. In answer to John Grahams letter you must get your dr to reffer you to a rhumatolgy dept for a correct diagnosis they will know the difference between the two pains.

penny, about 1 year

Hi i have had this condition for 10+ years i am now 49 and everytime my mobiity is due i get turned down for it three years ago when i went to tribunal there was a great dr on panel and i got it i have had to renew and have been turned down again i get the care component indefinately i have stair lift and ottherapist got my bathroom changed to wet room and my dr got me a wheelchair for outside problem is i need someone with me to push me. where we ive there are great mobility schemes and i ring and book and they bring me a electric scooter out to car and just for a couple of hours i can feel normal in the sence i can go in and out shops on my own i have got used to the pain and lack of sleep but it does get me down having to fight for things other people with less problems than me can get just because some people drs included don't agree about the condition

kathleen betty knowlesis this, about 1 year

is fibromyalgia hereditary, as my sons are concerned that they might get it in later life, even though i told them it was mainly females that have troubles, all the things that are said are the same as mine ,but i also have a pacemaker fitted, but as i am 61 i do as much as i can every day to help my condition. i have this site very interesting as the doctor that i saw back 3 years ago did not say much only that it was why i only need to sleep 3 hours a night.

debragoodwin, about 1 year

I have been a suffer of this condition for many years now and like you all the pain is so bad i dont know what to do and i even cry, what i find amost annoying is that people who dont understand the promblem do not realise the amount of pain we go through, iv even been at the stage where my whole body has shut down and my husband has had to feed me ,bath, and generally had to care for me, are you all aware that you can claim disbility living allowance for this complaint, and contact your ophealth they can help as well.

Linzi, about 1 year

I became ill after going on holiday 3 years ago with my chest which i stil suffer from, since then I have been diagnosed with fibromyalgia. I was 26 at the time since then I have out on weight as I find it hard to exercise often enough to be effective. My personality has changed I have gone from being a very happy sociabe person to someone who does not want to socialise because people cannot understand the pain im in, people who are not affected by it do not recognise it as an illness because there is nothing physical to see.Other than swimming or aqua areobics is there any other exercise that sufferers can do which is also effective.

melanie, about 1 year

hello sarah, i understand where u are comeing from, i have ahd this for 2 years after a heart attack.at the age of 37 im now 40, i was such an out going person done every think for myself..now im left depending on every one and i hate it theres no real pain relife im now adictted to the pain killers iv done pain management. i didnt like it at all didnt help me thy thort it was so easy to over come this illness, its not easy and it never goes away, u have to learn to live with it.swiming is very good for it.my doctor wouldnt give me morphine at all, cos of my heart im on maybe 25 26 tablets a day..i take each day as it comes.and i miss my life i had before.hope i helped melanie

melanie hall, about 1 year

im 4o years old and at 37 years old i had a massive heart attack..6mounths later i noticed i was in a lot of pain in hands, neck first then it seemed to go there my hold body..every day is very hard for me, i get it very badley in the tops of my legs and my back must be the worst, i find myself crawling to the bathroom. i sue to be so active had 3 jobs 3 children and a grandaughter that i cant look after because i can bairly get about myself , thow my son is very good i do see a lot of her.but theres days i cant hold her or just her touching me is so painfull. im sure theres others out there?

Yvonne Jones, about 1 year

I was diagnoised with fibromralgia in Septemer of this years I've had the symtoms for year and my old doctor in Wales wouldn't send me to see a spiecalist, now i live in norfolk my new doctor is excellent and after numerous tests i was refered to a rumertoligest who diagnosed fibromyalgia. What get me most of all is the brain fog cause i forget things and get thing mixed up, today i even thought it was saturday only realiseing when my parner woke me at 7.45! so the children just made it to school on time

JADE FREEMAN, about 1 year

I HAVE RECENTLY BEEN TOLD THAT MY THREE YEARS OF AGONISING PAIN IS FIBROMYALGIA.I HAVE TO GET IT CONFIRMED BY A ORTHO; SURGEON BEFORE MY G.P WILL OFFICIALLY DIAGNOSE ME. TO HAVE A RECOGNISED TITLE WILL BE A GREAT FIRST STEP FOR ME. I WAS BEGINING TO THINK I WAS GOING MAD AND IT WAS ALL IN MY HEAD. ANY IDEAS OR SUGGESTIONS AS TO HOW TO LIVE WITH THIS WILL BE GRATEFUL.

Lana Deanzut, about 1 year

It took me 4 years to convince my GP that i was in pain for 4 years it was very differcult to get my GP to understand i asked for a referal to see a specialist he confirmed that i had Fibromyalgia so i do understand what you are going through. He told me i had sixteen trigger points im on medication but i feel no better still in pain done some excises but it has made no difference. Been to pain manangerment was very good but do not know what to do next? still have chronic pain can anybody give me anymore advice woulkd be very grateful thank you. Kind Regards Lana Dean

Sarah Ramsden, about 1 year

My brother's girlfriend was recently diagnosed with fibromyalgia. She has been in a considerable amount of pain,and was prescribed morphine for the pain,which has affected her speech.She also gets very tired easily and finds it difficult to do everyday things.She now attends hospital for pain management,which she says helps a little.I suggest u try and get a second opinion from someone who will understand you. Good luck.

john graham, over 2 years

I seem to have all the symptoms that are in your notes. Unfortunatly i also have arthritis pretty well all over my body. This causes a problem because i can tell that a lot of my pain is not arthritis,it feels different. Having suffered arthritic pain for well over 30yrs, i can tell the difference, but trying to get a Doctor to understand is another thing. Is there any advice that you could give me.