Fibromyalgia

I’ve done a search in the community on this but can’t find anything recent so am starting a thread here to share and learn and discuss this condition. I was diagnosed with fibromyalgia only quite recently and similarly to the autism diagnosis it explains so much. It’s been wonderful to be heard, to have clinicians actually believe instead of gaslight me about the pain and exhaustion. The mornings are the worst for me with bendy-hurt and can take up to four hours to be able to function to then be slaughtered by an exhaustion wall mid afternoon. The functioning window is so miserably narrow  

I’d love to chat here with autistic people who share these two diagnoses, would love to learn more about pain management, coping skills and just generally share experiences. Personally I’m not going down the anti-depressant-as-painkiller route but am nevertheless happy to discuss meds so long as it remains within the community rules. Im a scientist by training so focus on facts based treatments but so far have found little which might help, possibly hypnosis but that’s complex and possibly dangerous for me given it’s very similarity to the sleep problems I experience, that blurring of consciousness and sleep. My auti hyper sensitivity to sensory stimuli makes me wary of acupuncture, and I’m definitely not considering weed though I appreciate it works for some. 

Anyway that’s the ball rolling, how do others experience and cope with this condition?

TIA

Emma

Parents
  • Hi. I don’t have any lived experience advice about fibromyalgia.

    However, I found a book called ‘All Tangled Up in Autism and Chronic Illness’ which you can preorder from Amazon. It may have some useful lived autistic experiences of fibromyalgia included or some helpful coping strategies like Spoon Theory.

    All Tangled Up in Autism and Chronic Illness: A guide to navigating multiple conditions https://amzn.eu/d/6pHbRVx

    I hope you will find this and the psychology sessions for pain management useful .

Reply
  • Hi. I don’t have any lived experience advice about fibromyalgia.

    However, I found a book called ‘All Tangled Up in Autism and Chronic Illness’ which you can preorder from Amazon. It may have some useful lived autistic experiences of fibromyalgia included or some helpful coping strategies like Spoon Theory.

    All Tangled Up in Autism and Chronic Illness: A guide to navigating multiple conditions https://amzn.eu/d/6pHbRVx

    I hope you will find this and the psychology sessions for pain management useful .

Children