Are there statistics on levels of incapacity of people with Fibromyalgia?

I have wondered many times if there are statistics or a graph of some kind which show the numbers of people with Fibromyalgia who would be considered severely disabled, moderately, or mildly, etc. I have seen so many of you on this forum write about being mostly housebound, or at least unable to work, or unable to do very much due to the illness. Yet, when I was diagnosed 12 years ago, my doctor was only newly aware of it, and since then, I've had other doctors express a feeling that for a person to be as disabled as I am is unlikely due to Fibromyalgia. Some have implied that it is mental or emotional or that I am just thinking I am this ill or exaggerating, or that if I tried, I would not be spending as much time in bed as I do. I wonder if there are really any statistics of how the illness actually affects most people who have it. If so, then we would feel a little more on stable footing when confronting people with these attitudes that Fibromyalgia is not really a debilitating illness.

Last edited by

9 Replies

oldestnewest
  • Thankyou Budgiefriend for posting and writing Question

    I've often wondered how they gauged the levels of disability. I'm housebound but have access to get out in the chair as long as someone is pushing me until I get my power chair, even then I still need someone with me. My Fibromyalgia is combined with Hypermobility Syndrome (HMS) to severe level meaning the moment I stand up something might pop like a knee or hip and then the movements cause me severe pain later on. Exercise such as hydrotherapy does wonders for the Fibro but makes the HMS worse I can't overdo it or underdo do it as the two conditions clash badly :( How would they gauge that situation?.............

    ................. not to mention all the illnesses like IBS, Chronic Fatigue Syndrome, Psoriasis I'm just recovering from a nasty spell of that which left my arms and hands in agony on and off for 4 weeks at least if not 6 :o plus many others......

    ................... I guess what I'm saying is that there are so many categories and then sub-categories and then deciding how to divide us all into types/groups. That's all before even considering producing statistics.

    By coming here and raising awareness to others about this would help show its some thing we'd like to see. Maybe there are ways we that we can help too :)

    Thanks again and good to see you back :)

    Healing fluffies on route to you

    :) xxxsianxxx :)

  • Hi Zeb,

    it would be great if Fibro was taken seriously as an incapacity. Feeling very frustrated right now.

    Hugs

    Jillyxx

  • Hi Jilly I'm sorry hunny I hope you're not frustrated because of what I wrote.

    Fluffie cuddles flying super fast to you xxx

  • Hi Zeb, no, not frustrated with what you wrote at all. Thanks for the fluffy cuddles, just fed up with not getting better and getting more depressed because I am not getting better and not even sure that my GP believes Fibro is real :-(. And even if people at DWP believe it's real, etc :-(

    Hugs

    Jillyxx

  • Aww ((((Jilly)))) I understand the frustration, its awful. Am I right in thinking you have a new GP because your GP retired? If so, can you possibly find a new one? After all being understood is needed.

    Don't give up hope Jilly and try to find the strength to change GP :)

    Its hard when our bodies contradict our brains and things don't work the same anymore so it is okay to feel frustrated and depressed.

    Maybe some guided imagery where you slowly work your way up and round a lovely green hill until you reach the top and then scream would help, hopefully you won't frighten the family :)

    Thinking of you hun and am here to listen anytime :)

    ((((Jilly)))) A new Fluffie Cuddle Recliner with a soft scent of lavender, a few cushions too of course! :D

    :) xxxsianxxx :)

  • That recliner sounds comfy. Think I will just curl up there for a time.

    Yes, my GP retired and I have this new one. She is very pleasant but when I asked her what her thoughts on Fibro were she replied that she believed it when people told her they were in pain. Only seen her a few times and she was more interested in my blood pressure. Lovely lady from the Fibromyalgia management course that I have been doing one to one with, wants me to go talk to my GP about some things but can't bring myself to do it as I don't feel at home her.

    Hugs

    Jillyxx

  • Maybe you wish she's your old GP the one that knows you very well. I would just go for it and explain what the fibro course are saying or even ask them to write your GP a letter.

    Got to try hun, she's a stranger to you and yes I admit it doesn't sound like she understands fibro right now but with a bit of educating she'll learn. Is she fresh from school, a newish to the job GP chances are has never had a fibro patient fight back for their cause before.

    Then if you still don't feel right consider changing..... its a new start with a new GP regardless whichever way you choose, I think!!

    Wishing you well hun and hope you have a brighter day

    Fluffies in sunshine yellows and oranges xxxx sian

  • Hi Zeb,

    I gather the lady I saw at the hospital is going to write to my GP and tell her what she thinks would help. My new GP has been a doctor for 25 years so she is quite experienced but it also means that Fibro is less likely to be well known by her I think. I struggle with change and I am wary of being pushed into things when I am nervous. Just generally out of my depth right now and just getting more and more anxious about life :-(

    Hugs

    Jillyxx

  • Hi budgie, it would be great to see some statistics. From what I've seen on this site and others, the experiences of us with Fibro is very different to the GPs opinion of Fibro - they seem very dismissive and uninterested and as a result seem to have no understanding of how this illness actually effects us. Even the NHS description of Fibro is greatly understated and dismissive & I'm convinced this is why so many of us have trouble claiming benefits.

    I also have been told by physio that I have hyper mobility, but anything I go to GP with he puts down to Fibro & won't diagnose anything else. I have to use mobility scooter to leave house and limited on what I can do in house.

    I hope that one day soon the medical profession & benefits system start to take Fibro seriously and give us the help we need & deserve xxx

You may also like...