Mobility vehicle - Page 2 — Scope | Disability forum

Mobility vehicle

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  • Zebra88
    Zebra88 Member Posts: 55 Courageous
    edited April 2019
    I personally think fibromyalgia is a symptom and not the root cause of pain. Widespread pain can be debilitating though.

    I only found out I had previously been diagnosed with fibromyalgia/chronic widespread pain at 17yrs old when I attended an ESA assessment which was needed at 27 yrs due to time off sick for cancer related illness. The AP had my medical records and GP report which I had never asked to see before. My GP had written fibromyalgia, and at one point "hysteria" about my bladder bleeding 😑 (my bladder is due to be removed soon due to hemmorhagic cystitis and I dont see that doctor any more). I felt like the fibro diagnosis and subsequent prescription for cocodamol and SSRI's and "come back in 6 months" was just fobbing me off every time.

    I actually have hyper mobile with crossover vascular Ehlers danlos syndrome which wasnt diagnosed until a few years ago. Because I previously had been going to the GP telling them my knees were bending backwards and my ribs hurt all the time they just assumed it was fibromyalgia without doing any tests. When I had genetic testing and cardiorespirary investigations etc I was found to have a genetic illness.

    I wrote to my doctor to take the fibro diagnosis off my records because I do not have fibromyalgia and I dont like the negative connotations that come with the diagnosis. I use a wheelchair due to dislocations and I dont want people to think it's because of muscular pain because I dealt with muscular pain for almost 30 years without relying on my chair. That's just my opinion and I'm not saying it isn't a real illness, I just don't like how it's seemingly diagnosed with no tests when someone could got a lot more help with their health if proper investigations were done in all cases.

    In my area there is no treatment for EDS or diseases of connective tissue. Instead you are sent on "fibromyalgia awareness sessions" to talk about your widespread pain. I felt like a fraud as everyone who turned up had fibromyalgia and I had to sit there, already knowing what was causing my pain and inflammation, while the therapist told everyone in the room that the literal meaning of fibromyalgia is "pain of an unknown cause" and that I could be in pain because I'm depressed. No, I'm in pain and depressed because my joints don't stay in place and my organs don't work properly.
    Myalgia = pain, fibro = muscles. Fir myself; that isn't a diagnosis it's a symptom of something else.




  • Zebra88
    Zebra88 Member Posts: 55 Courageous
    edited April 2019
    ilovecats said:


    I have a relative that has finally been diagnosed with EDS after years of refusing to accept a Fibromyalgia diagnosis. EDS sucks.

    I personally think fibromyalgia is given out too freely as a diagnosis without the root cause of pain being investigated. I agree that Fibromyalgia is a symptom and a large number of medical community believe (myself induced) that the pain is real but the cause is psychological. Too many people readily accept the diagnosis and resign themselves to becoming 'disabled' by the condition.
    It's not uncommon for EDS to be misdiagnosed at first as I'm sure you probably know. It's great that your relative finally has answers and hopefully correct treatment.

    I think more tests should be done. I was under the impression that fibro was the diagnosis after all other causes were ruled out but nowadays it seems doctors just use it as a catch all diagnosis.

    My partner was  also diagnosed with fibro/CWP and actually had a grade 3 spondylolisthesis and foraminal narrowing, and had emergency surgery to fit a brace around his spine after losing feeling in his legs. For 4yrs before that he had convinced himself he would always be in pain which has now left him with mental ill health as he pieces his life back together.

    I do not wish to discredit others personal exoeriences but from my personal experience whenever someone says they have pain they say it's fibromyalgia..  and that isn't their fault, it's lack of medical care.
  • djbantiques
    djbantiques Member Posts: 43 Connected
    ilovecats said:
    ilovecats said:
    Hi,

    For the mobility part there's 2 activities, following and planning a journey and moving around. The conditions which you mention above won't score you any points for following and planning a journey because this is for mental health, cognitive and sensory impairments.

    If your conditions make it difficult for you to walk then it's the moving around part that you should have concentrated on because this is what you could score points in.

    Was it a PIP review or did you transfer from DLA?
    Poppy is correct. Fibromyalgia is a physical condition that generally will score in mobility due to the pain when walking. To score Enhanced and therefore a mobility car you have to only be able to walk 20m or less, which generally only those who are very disabled cannot do.

    Activity 11, even if someone score 11F they will not be entitled to a mobility car, due to the cognitive, sensory or mental health impairment that would prevent them from driving safely 
    Wrong. Fibromyalgia can also affect cognitive ability and is not purely a physical condition.
    As an ex health care professional I would have expected you to know this. Maybe this explains why so many of the assessors get it wrong.
    Not wrong. It’s a physical condition. There are symptoms such as brain fog that are attributed to it, but again, doesn’t mean you are cognitively impaired in terms of PIP. No one knows enough about it and many heath professionals don’t even believe it is a really disease. I am not one of them. 

    Lets not not start assuming what I do and don’t know.

    Many symptoms are attributed to it because it has such a loosely defined scope of symptoms.
    Proves my point regarding assessors.
    Even when they are wrong they are right.
  • Government_needs_reform
    Government_needs_reform Member Posts: 859 Pioneering
    Here, here, I couldn't agree more and second that @poppy123456 👍 with the help @ilovecats has given people more hope and help on here.

    I know @ilovecats have given me sound advice with what we discussed a while ago. I thank you for that❤️ 

    My advice to anyone is if you don't like the advice, don't reply or even acknowledge it. End off.
    ⬇️
    I created one of the campaign election videos for Labour, and Jeremy Corbyn,
    This is a new version of Emeli Sande, Hope "You Are Not Alone
    I highlighted everything that's wrong with this country from benefits, NHS, UC etc, but now we have to put up with the hate now that is the Tories. 

    You can see the video here.
    https://m.youtube.com/watch?v=P5o8hRHh9IY


  • cristobal
    cristobal Member Posts: 987 Disability Gamechanger
    Further vote for @ilovecats advice ....gives a valuable insight into the mind of an assessor (!)

    Obviously, as @Government_needs_reform say, advice is just that - if you don't like it then ignore it and do something else, perhaps with a polite 'thank you' for the time and trouble that someone has taken to help you out...

  • djbantiques
    djbantiques Member Posts: 43 Connected
    Proves my point regarding assessors.
    Even when they are wrong they are right.
    I disagree, sorry. @ilovecats is no longer an assessor. He/she spends their valuable time here on the scope forum giving extremely good advice to other members of the forum. I've said this before and i'll happily say it again, i for one am very grateful for all their help here. My knowledge was fairly good before he/she joined us but now it's even better.

    Thank you @ilovecats for all the help and support you give to others here. It's very much appreciated!!
    As you have said many times the decision makers usually go with the assessors report, so even when they are wrong they are still right.
    That is until the appeal stage and then suddenly when the facts are looked at by 3 independent unbiased experts the assessors report is found to be unfit for purpose.
    As I've said before things are not always what they seem !!
    I have  5 years as a RGN, 32 years as a RMN, 8 years as a DLA assessor, 6 years as a PIP assessor and now 7 years as a benefits advisor and in that time have seen and heard things that would make people gasp.

    For anyone looking for advice please try and get face to face help. Forums like this are great for support but advice really needs to be on a one to one basis.
    @ilovecats my posts aren't a personal attack, but purely to highlight a deeply flawed system, my apologies if they seem that way. I've been in your shoes and am glad i am out.
    If the moderators could now delete my membership.
  • twonker
    twonker Posts: 617 Member



    I have  5 years as a RGN, 32 years as a RMN, 8 years as a DLA assessor, 6 years as a PIP assessor and now 7 years as a benefits advisor and in that time have seen and heard things that would make people gasp.
    Wow! I presume that you started work at age 16 and with 5 years RGN, 32 years RMN, 8 years DWP (DLA), that would make you 61. Then another 6 years DWP (PIP) finishing off with 7 years as a Benefit Advisor.
    So at 74 you are still going strong - good for you.
    What I can't understand is how you have managed to be an assessor for PIP for 6 years and then spent another 7 years doing something different. PIP didn't come on line until 2013 - 6 years ago so how have you managed to also put in a further 7 years as a benefit advisor ?? Moonlighting on government time ??  

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