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Long Term Outcomes in Fibromyalgia Syndrome

By: Suzanne Elvidge BSc (hons), MSc - Updated: 24 Jun 2017 |
 
Fibromyalgia Syndrome Chronic Outcome

Fibromyalgia syndrome is a chronic (long-term) syndrome. Because it is a syndrome (the name to describe a group of symptoms), outcomes will vary from person to person, and severity of fibromyalgia syndrome can range from so mild that it is virtually unnoticeable to so severe it is virtually disabling.

Children With Fibromyalgia Syndrome

Fibromyalgia syndrome may affect 0.5 to 6% of the population worldwide, and through it usually affects people aged 20 to 60 years, around one in six individuals with fibromyalgia syndrome are under 18. Fibromyalgia syndrome is more common in girls than in boys.

According to some studies, more than half of children who are diagnosed with fibromyalgia syndrome recover within two to three years. In a study of 50 children with fibromyalgia syndrome, 60% improved over 18 months. In another study of 15 children, 11 (73%) no longer showed the criteria for fibromyalgia syndrome after 30 months. In a further study of 33 children with fibromyalgia syndrome over an average of 2.6 years, most children improved and all showed some response to treatment.

Effect on Work

Figures vary, but according to one report, 10 to 30% of people with fibromyalgia syndrome have problems with work, and according to another, around 30 to 40% of people with fibromyalgia syndrome have either to change jobs or give up working because of their illness.

However, leaving work and the resulting isolation and inactivity can lead to individuals focusing more on the pain, and cause issues with self-esteem and fear of the work environment, as well as creating financial and family problems.

Some experts suggest that rather than leaving work, a short leave of absence can help people come to terms with the illness and its limitations, and learn, perhaps through counselling, how to deal with it and still maintain as much of a normal life as possible.

In a study from 2003, people with fibromyalgia syndrome or the related disorder, chronic fatigue syndrome, were more likely to lose their job or possessions, or have issues with support from family and friends, than people with other fatigue-related disorders.

Does it Get Better?

Fibromyalgia syndrome is not fatal, and does not cause damage to joints, muscles and internal organs. However, it is a long-term disorder. In some cases, stress-induced fibromyalgia can remit spontaneously if the stress is removed.

Some studies show that symptoms of fibromyalgia syndrome remain about the same – however, other studies do suggest that the pain improves in 25 to 35% of people, and further studies report improvements in half to two-thirds of people with the syndrome. Fewer than one in ten people will completely lose their symptoms over five years, according to a UK study. However, other studies suggest that symptoms may go away in 24% of people, and improve in 47% of people.

How to Improve the Outcome

The best management of fibromyalgia syndrome is multi-faceted, incorporating self-management, psychological therapy, drug treatment, rest and exercise. In a study of exercise in people with fibromyalgia syndrome, those who exercised had a better outcome than those who did not.

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Hi At the age of 37l had a really nasty Virus in January 97 Then l had an EMEA (Electric Microwave) operation done in April 97, then in May they found a blood clot in my Womb behind what they operated on. They managed to disperse the Blood clot only then at the beginnig of June 97 l had an accident at work due to being made to work in one place on a machine which l shouldnt have been for several hours All of a sudden l felt and heard a large click in my Right shoulder & neck, With excruciating pain I went to my GP and they told me l pulled a muscle so l was put on a course of physio therapy for 10 weeks, This not only did not help but made my pain global (from head to toe) On the 10th week they decided to take an X-Ray and found l actually broke my clavicle and because l had been given the opposite treatment that l should have had ( keeping my arm Still in a sling) l ended up being sent to Bath Mineral Hospital to be Diagnosed with Fibromyalgia Since then l have had to fight for any disability benefits The ESA is the worst as after being on Incapacity benefit from 97 - 2011 they decided to put me on Work related ESA and would not pay me anything as my NI was so called not up to date & l had to get sick notes from my GP to prove l was suffering with Fibromyalgia When l worked Fulltime From 76 - 97??? Last December 2016 they actually back dated my ESA to May 2015 but would not go back any further even though l have always been chasing it up to go on ESA Support Then in January of this year just over a Month since they authorised My ESA Support they stopped it as l have to go for another assessment The last one being a joke To check my short term memory The Nurse (an SRN) which didnt even know how to spell finromyalgia decided to take three items out of her drawer & told me to remember them and some time during my assessment she would ask me what they were I explained thats not how my short term memory loss works I forget dates, times, words that l want to say and cant explain my self She decided because l was given a lift to the assessment my Mental facultys were ok as she put down l could read a Sat Nav!!!! When l do not drive nor have l ever used a Sat Nav, Also she said my memory was good as l recalled the 3 items she pulled out of the Drawer I found her dirogitory, demeaning as for being able to walk as now l also have Osteoathritis in both of my knees and have to use a stick(supposed to be 2sticks) cannot use two as l cannot open doors or carry even a cup! I am now on the Highest dose of Oxycontin for my pain plus Carbamazipine(anti epileptic drug for spasms permanently in my neck) l still suffer 24/7 in pain and some days l cannot even get out of bed Now l just recieved an assessment form for PIP which lm due to go on Tuesday next week (Watch this space) Last June l split with my husband whom l was with since l was 13, He looked at things he should have and got himself arrested, l was abused from when l was 3 years ol
Ela - 24-Jun-17 @ 4:20 AM
Talking of pip,which used to be dla,i have had an assessment and apparently my pip has been taken of me as i showed no signs of pain and i dont need aids to help me as i can walk the meters they stated. 50 meters, where the hell is that going to get me in wales? No where,they say i am mobile enough to get around. Im not, even tho I have provided evidence of what i have this has not been taken into account. It gets me so mad,they see us as been ok and not in pain but how can they say we are not in pain? It cant be seen. Its invisible. I couldnt even read the decision due to the way they had written it,it may of well of been in Welsh then in the poorly written english format that it was in. So according to the dwp pip to them i have miriculously been cared of my health conditions. So they say.Not Now i have a battle on my hands to be in receipt of what i should be entitled too. Yet again. Non of my conditions will just disappear. Theres so much that they dont understand, i have problems washing and dressing even if i dont ask for help. I dont cook proper meals,i eat out. Even this they dont believe. I rely on my wheelchair to which they say i dont need.as im mobile. So how is it that i now have to move from where i am as my ot has stated that i may get worse in years to come. I have all the paper work to prove that fibromyalgia does and is effecting me yet the dwp are just to ignorant to see this. I walked up the Aberystwyth Hill the other day as a challenge to myself, i got to the top but my legs turned to jelly and my feet and knees burnt with pain. My lower part of my body was on its way to giving way on me. No one seems the pain,the frustration of the words not coming to you,words that was in your vercaberly once before are now lost. The things you used to be able to do but now take you longer to do. It may not be cancer but its a cancer to your system. How does or how would cbt help you manage your pain?Talking therapies, may help some but my brain is too clever for that,i know how it works. We can talk about how it effects us till were blue in the face,but where does it get us? It doesn't. Its just easier to just get on with it, do what we know we can do and what we cant has to be left.
Demonica - 5-Dec-16 @ 9:55 AM
Shaunyboy- Your Question:
Demonica, you could be writing about me, except for a couple of things! First, I am male, aged 54. Was a soldier for 24 years, then a proud (& fit) Veteran. Had totally unexpected heart attack in 2008 which was stented. After this trauma the fibro symptoms started. Like you I need sticks, wheelchair/electric wheelchair to get around. Have a stair lift & wet room fitted by council. My beloved wife gave up work to care for me full-time. Everything causes me pain. I have the brain fog, dizziness, etc. Laugh every time a health care professional tells me to exercise more when I can't even walk 5 paces without severe pain! Had my PIP assessment yesterday at my home (as leaving home causes anxiety problems as well as too much pain). No idea how it went!! One question I was asked was "If you have a pound then spend 75p, how much do you have left?" What that has to do with being in constant pain & feeling constantly depressed!!??!! Today I feel even worse, physically and especially mentally/emotionally. Am so very scared I will lose my DLA, which means I also lose my motability car.everything. Feel like I've let my wife & family down again. So incredibly down

Our Response:
I am sorry to hear this. It is perfectly normal that you feel the way you do, and much of it will be down the grief (as in the loss of the health that you once had), especially if you have gone from being able-bodied and incredibly active as a soldier, to being someone that has to depend on assistance from others. I can only suggest you see your GP, for counselling, or join forums or Fibromyalgia groups. Even when we know the reaons why we are feeling low it is often helpful to talk about it to somebody else. Unfortunately, the government is putting more pressure on people who are suffering from disabilities by removing benefits, so it is understandable you feel at a loss. However, remember it is not your fault, and it's great that you have a loving wife and family, who you haven't let down, as bad health is no fault of your own and nothing to be ashamed of. Hopefully, your benefits will remain and you can work on getting yourself into better health by seeking help from whatever source necessary.
FibromyalgiaSyndrome - 9-Mar-16 @ 11:21 AM
Demonica,you could be writing about me, except for a couple of things! First, I am male, aged 54. Was a soldier for 24 years, then a proud (& fit) Veteran. Had totally unexpected heart attack in 2008 which was stented. After this trauma the fibro symptoms started. Like you I need sticks, wheelchair/electric wheelchair to get around. Have a stair lift & wet room fitted by council. My beloved wife gave up work to care for me full-time. Everything causes me pain. I have the brain fog, dizziness, etc. Laugh every time a health care professional tells me to exercise more when I can't even walk 5 paces without severe pain! Had my PIP assessment yesterday at my home (as leaving home causes anxiety problems as well as too much pain). No idea how it went!!One question I was asked was "If you have a pound then spend 75p, how much do you have left?" What that has to do with being in constant pain & feeling constantly depressed!!??!! Today I feel even worse, physically and especially mentally/emotionally. Am so very scared I will lose my DLA, which means I also lose my motability car.......everything. Feel like I've let my wife & family down again. So incredibly down
Shaunyboy - 8-Mar-16 @ 5:35 AM
I developed M.E at 31, unsympathetic GP refused to acknowledge that I had a problem. Saw a locum who immediately suggested M.E and started tests and treatment 2 years later. After a lot of rest as fighting it just made things worse I started to recover. I was due to return to work when shopping with my father we were hit head on by a speeding car. My father gave up driving and difficulty in walking afterwards. I was thrown against the window screen and had quite severe whiplash and bruising to my chest. Result was that I ended up I a neck brace, lost my job, car and almost my home. Excellent GP(former locum) got me to a specialist physiotherapist and gave me back my life. I found another job and continued to bring up my 3 children. I managed my M.E with support from family and friends. As I went through the menopause I was finding it harder to do simple things. Then I started to develop other symptoms such as sciatica and tender spots on my upper body. Shakes, pins and needles and a fear of MS or Parkinsons Disease. Now living in a rural backwater of Wales I was treated to morphine, high dosesof anti depressants and an assortment of other drugs.Most of which have left me with acute memory problems. Nine months before labeled fibromyalgia. By this time I had gained a criminal record as I got confused filling in forms by telephone for state benefits. I am constantly being sent letters threatening to stop my benefits (my sole income) as I still struggle to deal with paper work. Social services have reduced, stopped and restarted my care after many battles. I now receive two 45 mins visits per week to assist me to shower and dress, the rest of the time Ionly do this whe I have a medical appointment to attend as it can take me up to two hours by myself if I am well enough. My main dress is nightwear. I have tried to manage it with the exercise/rest but end up worse pain and even more limited mobility. Last year ARC sent me a booklet in which they wrote that their research had concluded that M.E and Fibromyalgia were one and the same thing. Current GP has said that there is nothing more that he can do for me. Rest and Tramadol/paracetamol prescribed but often do not give much relief.Surely someone is developing something to help the rising number of sufferers.
long plait - 12-May-15 @ 12:09 PM
iv been in pain for as long as i cn remember, whn i was a child i gt told it was growing pains. abt 6 years i got told it was rheumatism arthritis and now recently I got told it is fibromyalgia, I am in so much pain I can't do anything right I can't remember anything and can't walk can't do anything, i cnt remember whn i last had a gud nite slp. sometimes while most of the time my neighbours when did you see me asked why I'm not out they already know I have arthris but they don't know I have fibromyalgia one of my neighbours bought me a heated blanket from my spine and my neck that helps a little bit but not a lot. The doctors need to find a proper treatment for us as painkillers really don't help, no one knows what we go through and how much pain we go through only to person that is suffering the pain knows how much pain now going through I am sitting here speaking to my iPad as my hands are stiff my fingers my neck is stiff I cannot move the pain. memory what memory I don't have one any more it's like a sieve I cannot remember anything if there is anyone out there that can help me with some advice that's Help them I can trying out to see if you can help me I'll be very grateful.
gul - 17-Sep-14 @ 12:16 PM
I have only had fibro now for 3 years but it seems a lot longer.as every single day with this its unreal and so hard to explain to people as so much to it.so just say chronic as no there's such a stigma with fibro.a very destressing syndrome to have for anyone the host of symptoms are unreal to cope with.no wonder we get so low as anyone would if ythere life was taking away by an illness that has total control of our insides.total chaos 24/7
Issy - 6-Jul-14 @ 1:16 AM
I have just been diagnosed with fibromyalgia I was going to see my doctor I told her that I could not stand the way I was feeling any more feeling tired all the time aches and pains in my legs back chest just like having flu most of the time I just put this down to the menopause. I get sick of feeling this way every day. dose any one know if there is anything out there to take to help ease this. thank you fluffy
flluffy - 3-Jun-14 @ 10:00 PM
I got diagnosed with fibromyalgia 7 years ago after a road traffic accident, but over the years it has got extremely sore at the base of my spine, it looks like a will be taking medaction for a while,
Big j - 27-Jan-14 @ 9:27 PM
Your not on your own im 54 was fit healthy and goog fun to be around I have what you have and arthritis as well for 5 years I dont want to worry you but it does not get better some days I feel so ill I just dont no what to do I would love to chat with you some more from juby
juby - 19-Jan-12 @ 1:26 PM
Hi, i was diagnosed with Fibromyalgia and oesteo arthtiritis 2 years ago and recently with depression, i was an active working female and always had been active. I have brought up my children, loved walking and most other activities, but slowly but surely both these illnesses have brought me down to almost a cripple, i can no longer walk long distances , it cripples me to walk around Sunday markets, or shops as i get fatigued really easily, and experience bad pains often accompanied by migraines afterwards. I have a walking stick to aid me in walking, a mobility scooter that i use for my shopping as i am unable to carry things back from the shop, and have since in bought a wheel chair as some places i am unable to use my scooter due to it not going long distances. Medications are not working for me, and i still am in a lot of pain. Most of the symptoms on this site i have already have, and what i dont have i seem to be experiencing new symptoms nearly every week. pains in my eyes, vision distorted, brain fog, dizzy spells, what dont i have, and the future looks bleak until a cure is found for us. The doctor tells me to exercise, how can i when both conditions fight against one another, as i have said i used to be active and fit and now i have been brought down to this level. Even to walk gives me fatigue, and pain. No exercise is not possible for me, not a chance, i do the house work and walkwhen my condition lets me even if it is short distances. which ever way i look at it i am in pain and the pain does not stop. neither do the other symptoms.
demonica - 22-Nov-11 @ 7:30 PM
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