Just found out I have Fibromyalgia — Scope | Disability forum
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Just found out I have Fibromyalgia

carty Member Posts: 1 Listener
Hello I have just found out I have fibromyalgia after been in pain for two years not sure what to do or what is going to happen felling scared 


  • katiesymon
    katiesymon Member Posts: 59 Connected
    Sorry to hear that. I have 2 friends with it. Both quite ill and debilitated. I hope you find a support group. Have you looked on line ?
  • Ami2301
    Ami2301 Member, Community Co-Production Group Posts: 7,945 Disability Gamechanger
    edited July 2019
    Hi @carry welcome to the community! Feeling scared and not knowing what to do or where to turn when newly diagnosed is completely normal. It is overwhelming when coming to terms with what is happening. Have you checked out FMA UK at all? They offer lots of support and advice. If theres anything else that I can help you with then please let me know :)
    Disability Gamechanger - 2019
  • EmmaB
    EmmaB Member Posts: 263 Pioneering
    Dear @carty
    In my experience there are 2 camps for fibromyalgia. 
    One which believes it is a neurological condition and that it's just a question of learning how to live with it eg pacing yourself, pain management eg mindfulness or medication [which may or may not help].  The other is that it is caused by past trauma being played out in the body and therefore there is more hope of recovery in this group, here specialist therapy such as somatic therapy or EMDR can help. 
    Either way it's important not to be defined by a label.  How it affects you and how you deal with it will be a very personal thing and I hope you can find a positive approach to this rather than feel that you will necessarily end up being very ill/debilitated [as some are but I do wonder what they've been told eg if you are told you won't get better or that you'll get worse you tend to live up to that expectation...].
    Hopefully you have a supportive GP and maybe they can refer you for some counselling to help you deal with this transition.
    Best wishes.


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