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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

Parents
    • Hi Emma, I have both as well. I’m very sorry to hear you’re dealing with this. It takes time but eventually I learned how to manage it. I’m still always in pain but I have ways to keep it bearable. The beginning years are the worst in my opinion as the new symptoms appear and you’re learning to navigate them. This is what I do:

    -turmeric with black pepper supplements. High quality, organic. I stopped taking NSAIDS. Don’t mix the two  

    -acupuncture every week. Takes a while to find someone who knows what they’re doing but face down is best and avoid trigger point (tends to produce soreness and a worse flare up). Personally, massage backfires on me each time. I hate needles too but it’s not too bad if the clinic and person is calming. 

    -ice packs in the morning. I have some with straps so I can put them on as I get ready. 
    -20 min of stretching in the morning and at night. This includes my physical therapy exercises and some yoga poses. At first, you might benefit from PT and learning what to do and then eventually I memorized the moves and could do independently. 
    -I like rubbing MSM gel in on my worst days over CBD oils. You can have someone massage you as long as they don’t go too hard. 

    -lavender essential oil mixed with body lotion at night is nice too. 
    -red infrared light and acupressure mats are nice although not necessary. I found reiki helpful as well if you want to give it a shot  

    -you might benefit from a knee pillow if you sleep on your side and have hip pain. 
    -supportive house shoes i. e Birkenstocks. Good for the back  

    -notice your triggers for flare ups. For me, heavy lifting, lack of sleep, catostrophizing things, trauma memories, stress before travel, lack of exercises, and my period.

    I hope this helps a bit and you find what works for you! Take care of yourself <3

  • in reply to NAS88887

    The fatigue and Brain fog get better I promise. Although it’s not linear. Diet is a huge one here! Take out processed junk food, get yourself some celery juice, seaweed, salmon, organic vegetables and fruit (I buy them frozen so they last longer), spirulina and wild berry powder for smoothies, lemon balm tea is nice. 
    I avoid corn, gluten, overly yeasty products.

    It gets better. I know there’s a depression that hits with the grief of your once easy, healthy body but im so used to it only on the bad flare up days I cry now. Sending you lots of love and support 

Reply
  • in reply to NAS88887

    The fatigue and Brain fog get better I promise. Although it’s not linear. Diet is a huge one here! Take out processed junk food, get yourself some celery juice, seaweed, salmon, organic vegetables and fruit (I buy them frozen so they last longer), spirulina and wild berry powder for smoothies, lemon balm tea is nice. 
    I avoid corn, gluten, overly yeasty products.

    It gets better. I know there’s a depression that hits with the grief of your once easy, healthy body but im so used to it only on the bad flare up days I cry now. Sending you lots of love and support 

Children
  • in reply to NAS88887

    Thank you for your interesting suggestions. My diet is good having dumped junk and most processed food a couple of years ago, I am considering both acupuncture and hypnotherapy which I’ll discuss with my fibro team next week. I am learning about my triggers as you suggested, well Im trying to but tbh there isn’t a clear pattern yet, hopefully in time I’ll find clarity on this. Id be interested to learn more about turmeric if you could advise, I have some friends who have also suggested it but I’ve read too that it needs to be consumed in larger quantities than can practically be achieved to be effective, it’s the scientist in me always on the hunt for proof and facts. Thanks.