Fibromyalgia — Scope | Disability forum
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Fibromyalgia

Toffee
Toffee Community member Posts: 251 Pioneering
Is fibromyaglia classed as a long term disability please 

Comments

  • HeatherB1963
    HeatherB1963 Community member Posts: 2 Listener
    I think it was recently recognised as a disability 
  • Toffee
    Toffee Community member Posts: 251 Pioneering
    Thank you Heather I just been diagnosed and wasn't sure
  • [Deleted User]
    [Deleted User] Posts: 142 Listener
    Yes it is, unfortunately as I’ve had it for years. Sending you lots of love as it’s a hard diagnosis to deal with! Xx
  • Toffee
    Toffee Community member Posts: 251 Pioneering
    Ty you nikoo you 2 xx
  • Topkitten
    Topkitten Community member Posts: 1,285 Pioneering
    Yes it is a disability and like a few others invisible. It is, however, still significantly misunderstood by non-sufferers. I think that it is a progressive condition but am unsure if that has been proven yet. Like Chronic Pain it is variable which makes it that much more difficult to prove that a person is disabled by it and there are many people diagnosed with it that can lead a fairly normal life. Unfortunately this can leave it open to misunderstanding and would think that the PIP assessment process might make use of this to avoid treating cases of it with the respect due.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • Toffee
    Toffee Community member Posts: 251 Pioneering
    Ty so much topkitten
  • Milly123
    Milly123 Community member Posts: 34 Connected
    I agree with you topkitten. These assessors don't understand what fibromyalgia is like at all. I'd like to give them my fibro for a day and then they might have some idea what we have to go through every day. I also think it is a progressive illness as I have definitely got worse over the last 10 years. I think it's recognised as a disability but although most people seem to have had it for years, i'm not sure if its recognised as a long term disability. Of course there are a lot of other problems that go alongside with fibromyalgia such as ibs and arthritis to name but a few. I myself have a lot of other health issues as well as the two I've mentioned. It took a long time to get a diagnosis but when my doctor at the time looked at everything that I'd had, he did the tender spot tests and told me I had fibromyalgia. I was then sent to rheumatology where they sorted out what tablets to put me on. Take care toffee and sending lots of gentle hugs xx
  • Toffee
    Toffee Community member Posts: 251 Pioneering
    Thank you milly so much I got sent to rheumatology he said he didn't believe in tablets refared me to op like no one what's to help xxx
  • Milly123
    Milly123 Community member Posts: 34 Connected
    Toffee, i'm so sorry that you got sent to a rheumatologist that wouldn't help you. Maybe you could go back to your Gp and let them know what's happened. They may be able to refer you to someone else who will understand all about fibromyalgia and be more sympathetic. There must be someone that can help you get the right treatment. Gentle hugs xx
  • Toffee
    Toffee Community member Posts: 251 Pioneering
    Yes I will milly thank you thank for taking time to reply xxx
  • Milly123
    Milly123 Community member Posts: 34 Connected
    You are welcome Toffee. I hope you manage to get some help. Gentle hugs xx
  • Yadnad
    Yadnad Posts: 2,856 Disability Gamechanger
    edited July 2018
    Toffee said:
    Is fibromyaglia classed as a long term disability please 
    Yes it is much the same as being a Type 1 insulin depend diabetic where with that condition  it is rare to get awarded PIP as the impact of it on day to day living is little known about by the public at large, never mind the DWP or government.

    The impact caused by Fibro is becoming more known about because people talk about it. With diabetes it is kept in the dark corners and very little argued for within the disability benefit system. I for one have the condition and it does cause a lot of difficulties. But have never disclosed it in any sickness or disability based benefit claims simply because no one would believe that the difficulties exist. It's only the people that have the condition that know what it is, and how it affects people. My GP refers to it as the 'Mother of all Diseases'.
     
  • Toffee
    Toffee Community member Posts: 251 Pioneering
    Thank you yaddad
  • Milly123
    Milly123 Community member Posts: 34 Connected
    Hi Yadnad, 
    I do feel for you having this horrible illness. My husband also had type 1 diabetes so I know first hand how it affects you each and every day. It's only people who have the disease and their family and friends that appreciate the difficulties and challenges you face. My husband died some years ago now ( nothing to do with his diabetes I must add), and was so poorly that for the last year of his life, I had to give him his insulin injections as he could no longer do it himself. I hated causing him more pain by doing this to him as I admit at the beginning, I found it hard to do as I have a bit of a needle phobia. I was offered no help, I just was left to get on with it.
    Surely diabetes is classed as a disablement, so you would have every right to claim benefits for it. It has been around for long enough that all health proffesionals would know about it. If they don't, then they are in the wrong jobs. Your GP is right when he or she calls it the "Mother of all Diseases".  Gentle hugs x
  • Yadnad
    Yadnad Posts: 2,856 Disability Gamechanger
    edited July 2018
    Milly123 said:
    Hi Yadnad, 
    I do feel for you having this horrible illness. My husband also had type 1 diabetes so I know first hand how it affects you each and every day. It's only people who have the disease and their family and friends that appreciate the difficulties and challenges you face. My husband died some years ago now ( nothing to do with his diabetes I must add), and was so poorly that for the last year of his life, I had to give him his insulin injections as he could no longer do it himself. I hated causing him more pain by doing this to him as I admit at the beginning, I found it hard to do as I have a bit of a needle phobia. I was offered no help, I just was left to get on with it.
    Surely diabetes is classed as a disablement, so you would have every right to claim benefits for it. It has been around for long enough that all health proffesionals would know about it. If they don't, then they are in the wrong jobs. Your GP is right when he or she calls it the "Mother of all Diseases".  Gentle hugs x
    As you say only those in the know can appreciate how it affects the patient. Yes it is accepted as a disability and of course medical staff know all about it. But what most don't know is what happens behind closed doors away from the GP surgery. A simple thing are the mental issues. One in particular is total impotence. It's not too bad in an older guy but in someone younger it would destroy them. Try explaining what a Hypo is and how it affects the patient. Try explaining what the dangers are of a Hyper and what can happen if not treated quickly..

    The comments I hear from the initiated is that all you have to do is 'jack up' and the problems are solved. I wish it was just that simple.
    Personally I don't expect the DWP or their assessors to know anything more than you have to watch your blood sugar levels. So there is little point in trying to convince the DWP otherwise. 

    Personally I always laugh it off to those who don't know, I tell them that you can eat and drink anything all you need is a bigger dose of Insulin.

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