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Fibromyalgia

Alice-nice-Alice

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

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  • Hi there, i thought id reply because there are certain things youve said that struck a cord with me. i was diagnosed with Fibro back in 2009, i later got my EDS diagnosis and awaiting my assessment for autism. i think ive learnt that regardless of the name they give it, chronic pain has the similar effects mentally, not just physically. i too went through pain clinics and as much as i dismissed them at the time, they have been extremely helpful - just try and switch it up to work for you personally, whats right for you, is right for you and perfectly ok. the biggest struggle for me, was loosing that old version of me - indeed its grief, grieving who you were and grieving the future you thought was set in stone and now to top it off...all that fab energy is gone! i would say it takes time and acceptance. heres the wonderful thing to look forward to - it will all improve with time, help and patience. its all chaotic as its new, right now. im here to tell you, it does pass, i sympathise totally and remember when i felt like this - "i HAVE to do something/anything to get me out of this nightmare". going forward, you'll prob form a different relationship with your body and i found that is key - only so many people can 'tell' you whats best. im from the work hard, dont complain similar type of family, so i know how this culture can be both helpful and unhelpful - unhelpful for self-blame/laziness, but helpful to pull yourself up/keep going at the slightest glimpse of a lower-pain-day. so to answer your question diet (can be extremely hard), pacing, accepting help from others (BIG hurdle for me) and importantly recognising personal achievements no matter how small. oh and second the knee pillow for sure. 

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  • Hi there, i thought id reply because there are certain things youve said that struck a cord with me. i was diagnosed with Fibro back in 2009, i later got my EDS diagnosis and awaiting my assessment for autism. i think ive learnt that regardless of the name they give it, chronic pain has the similar effects mentally, not just physically. i too went through pain clinics and as much as i dismissed them at the time, they have been extremely helpful - just try and switch it up to work for you personally, whats right for you, is right for you and perfectly ok. the biggest struggle for me, was loosing that old version of me - indeed its grief, grieving who you were and grieving the future you thought was set in stone and now to top it off...all that fab energy is gone! i would say it takes time and acceptance. heres the wonderful thing to look forward to - it will all improve with time, help and patience. its all chaotic as its new, right now. im here to tell you, it does pass, i sympathise totally and remember when i felt like this - "i HAVE to do something/anything to get me out of this nightmare". going forward, you'll prob form a different relationship with your body and i found that is key - only so many people can 'tell' you whats best. im from the work hard, dont complain similar type of family, so i know how this culture can be both helpful and unhelpful - unhelpful for self-blame/laziness, but helpful to pull yourself up/keep going at the slightest glimpse of a lower-pain-day. so to answer your question diet (can be extremely hard), pacing, accepting help from others (BIG hurdle for me) and importantly recognising personal achievements no matter how small. oh and second the knee pillow for sure. 

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