Parkinsonism and fybromyalgia pain

pepe14penny
pepe14penny Online Community Member Posts: 3 Listener
edited October 2021 in Rare, invisible, and undiagnosed conditions
Does anyone else have this?  If so, how do you deal with it?

Comments

  • Liam_Alumni
    Liam_Alumni Scope alumni Posts: 1,087 Empowering
    Hi @pepe14penny,

    We have a few members of our community that have fibromyalgia, and a dedicated category here about dealing with chronic pain which might be of interest to you. As for Parkinson's, I found a page about pain on the Parkinson's UK website, which you might find useful.

    I hope this helps!
  • Barrylad1957
    Barrylad1957 Online Community Member Posts: 99 Contributor
    @pepe14penny
    Hi, I got diagnosed with Fibromyalgia last year; I'd never even heard of it before then. I'd been suffering from awful pain and other symptoms for quite some time, for which I'd been prescribed first Zapain, then Tramodol, neither of which did anything (other than making life a bit more difficult to negotiate).I was actually diagnosed after a thirty minute check by a visiting GP who was covering at the surgery. He prescribed me amitriptyline, a low dose at first, but increased it until it was fully working. I've met other sufferers since who've been prescribed gabapentin, or pregabalin, so it depends on what your gp thinks will suit, I reckon. Some have advised exercise, but Ive found that any exertion beyond my day to day norm merely increases my awful fatigue, and that horrible 'stiffness' we are blessed with upon waking. I get vertigo as well, which isn't reckoned to be a symptom of fibro, but it appeared and began at around the same time, so...
    I'm still a newbie myself, and I find it terribly debilitating, but I'm 60, my life has changed in a remarkably short space of time; My original 'work coach' at the jobcentre told me that it was "a made up illness that didnt actually exist", but I now know a few doctors, one neurologist, several fellow sufferers, and 11 pages on the nhs website that say different: I wouldnt want anyone else to experience the pain levels I was enjoying before getting amitriptyline, so you do have my sympathy. Stay safe.
  • Kathdavieskd
    Kathdavieskd Online Community Member Posts: 3 Listener
    The most relief I have found is gabapentine, without this I would not have wanted to carry on. It was a life saver for me. 
  • charlie2017
    charlie2017 Online Community Member Posts: 24 Listener
    I've had fibromyalgia for twelve years what would you like to know ?

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