Mastodawn

Having taken my first serious break from work, I’ve realized that I have more #fibromyalgia symptoms than I previously thought. I had severe touch sensitivity which mostly seems controlled but I always chalked up the tiredness, soreness and poor sleep to stress. Does anyone else with fibromyalgia have recommendations or updates to the research from the last decade since I was diagnosed? I’d appreciate thoughts and support which I know I’ll find in my mastodon community!

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Insecurity Princess 🌈💖🔥1d ago

@irene 💞 I don't know much about fibro but I noticed becoming a lot more aware of my ME/CFS challenges while taking my first serious break from work

(It's been almost a full year since I started seeking a specialist to help, and I'm still 2 months away from seeing a specialist, due to extended wait lists)

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MissConstrue 1d ago

@saraislet @irene
I have fibro, rheumatic arthritis and lupus, just a whole host of autoimmune issues, and I stay pretty on top of white papers.

There hasn’t been much change in treatment modalities for fibro. First line is usually cymbalta, which is efficacious for a majority of patients. It worked for me for years, and then didn’t, so I stopped taking it. I was prescribed plaquenil for lupus, and it helped with fibro symptoms as well, but supplies were intermittent during COVID, then it went up to 600 a month, so I had to stop, when I went back to it after the gouging was over, I’d developed a serious reaction, so it’s off the list too, for me.

Mostly they recommend rest, heat, massage, etc. post menopause, there is research suggesting HRT is beneficial, but I’ve not tried it yet, gonna ask on my next visit.

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Katie Lim 1d ago

@irene low-dose naltrexone for any chronic pain tbh! when i went to see the pain specialist at UW, they told me that they only prescribe it for fibro actually (and wouldn't prescribe it to me as a result lol). the paper studying its use for chronic pain (incl. fibro) is here: https://pmc.ncbi.nlm.nih.gov/articles/PMC3962576/

i have been recently told by a non-doctor that low-dose specifically is not necessarily an end-all for drinking, you just have to be really careful since you don't get buzzy. they also didn't tell me to hold it for surgery this time, even with an opioid prescription, so i have no idea what's up with low-dose specifically.

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Marin 19h ago

@irene I would also suggest looking into low dose naltrexone! For me it took away the touch sensitivity almost completely. I had the feeling of being severely sunburned all the time. Now it is just... fine?

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✧✦Catherine✦✧17h ago

@irene LDN is on my list of things to try. I don't bother talking to doctors to get prescriptions for anything I think could work that isn't scheduled, it's not worth the hassle; naltrexone is cheap and easily obtainable. can't say how well it works yet, am not in a stable enough position to switch to that from pregabalin/tramadol

the latter combination a specialist told me will make knowledge work for me impossible within 6 months... 3 years ago. I don't think I've acquired any significant cognitive impairment I can attribute to that, nor did I need to increase my dose; but it's definitely a drug combination that... how do I put it, experientially defines your life? not in a bad way, just in a "you're going to plan everything around it now" way.