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fibromyalgia and therapy

needavanneedavan Posts: 9Member Listener
I have had fibromyalgia probably over 20 years now, I am seeing a therapist who is trying to resolve my "issues from the past"
The lady is very nice but clearly doesn't understand about fibromyalgia, she is trying to get me back into routines, getting up at a regular time, going out every day. She doesn't seem to understand how much pain I am in, she sees me struggle from the car to the therapy centre literally about 15 metres, with crutchs or walker.

I am just exhausted most of the time, don't sleep much because of the pain, doesn't help with the heat either. I get heat stroke really easy-medication?

Just getting washed dressed, well thats like I have climbed mount Everest twice, absolutely exhausts me.

But I am supposed to get up early 8am,  sometimes I am only just getting to sleep by then, I sleep haphazardly, I just don't think its possible to live a normal life with fibromyalgia, a disjointed life.

I am just so tired I am dropping off in the daytime and often just crawl back to bed, to go out every day would be impossible, even a meal out 2-3 hours leaves me exhausted and I have to build myself up before for that.

Surely the therapist should be understanding of chronic long term illness and providing understanding help and support.

Or should I or can I find a new therapist, are there specialist fibromyalgia therapists?

Replies

  • Sam_ScopeSam_Scope Posts: 7,732Administrator Scope community team
    Hi @needavan ;
    We have lots of members with Fibromyalgia and also lots of us with illnesses, disabilities or impairments that cause fatigue, so you aren't alone.

    It is so hard to understand and so hard to explain to others isn't it?

    I don't know if there are specialist fibromyalgia therapists but it may be worth you looking for a therapist who has a good understanding of disability? I think it would be a case of checking websites and calling around.

    I wonder if you know much about Social Prescribing and whether your GP practice has a social prescribing lead? Perhaps it is worth asking at your GP if they have any extra support for people with long term chronic conditions?

    FMA UK is a national Fybromyalgia charity and they have a helpline
    I wonder if giving them a call might help you?
    Scope
    Senior online community officer
  • JurphJurph Posts: 290Member Pioneering
    What kind of therapy are you currently doing?

    I found Cognitive Behavioural Therapy quite good. It taught me to think slightly differently.

    For me, I needed to lower my expectations and realise I couldn't do what I used to be able to do 10 years ago. It made my goals more realistic so I stopped feeling I was failing at everything.

    I was pleasantly surprised with the results.
  • April2018momApril2018mom Posts: 2,217Member - under moderation Disability Gamechanger
    CBT is good. I would look into that. What therapy are you doing at the moment? Does it work or not? 
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