Fibromyalgia

Just came across this study published last month, looked interesting and worth sharing.

https://www.mdpi.com/1999-4923/17/8/1004

Here's the abstract:

Abstract
...
We retrospectively reviewed the medical records of 100 patients diagnosed with primary fibromyalgia. Those showing symptoms indicative of small fiber dysfunction who were treated with L-Acetyl Carnitine (LAC) and Palmitoylethanolamide (PEA) alongside standard care (SOC) were compared to matched controls who received only SOC. To ensure comparable groups, propensity score matching was used. Changes in Fibromyalgia Impact Questionnaire Revised (FIQR) scores over 12 weeks were analyzed using non-parametric tests due to the data’s non-normal distribution. After matching, 86 patients (43 in each group) were included. The group receiving LAC and PEA as add-on therapy experienced a significant median reduction in FIQR scores (−19.0 points, p < 0.001), while the SOC-only group showed no significant change. Comparisons between groups confirmed that the improvement was significantly greater in the LAC+PEA group (p < 0.001). These results suggest that adding LAC and PEA to standard care may provide meaningful symptom relief for fibromyalgia patients with suspected small fiber involvement. This supports the hypothesis that peripheral nervous system dysfunction contributes to the disease burden in this subgroup. However, further prospective controlled studies are needed to confirm these promising findings.

There's a few other studies out there (https://pubmed.ncbi.nlm.nih.gov/17543140/, https://pmc.ncbi.nlm.nih.gov/articles/PMC7551150/, https://pubmed.ncbi.nlm.nih.gov/37378482/) finding similar positive outcomes, so while it's still early it seems promising to me.

Anecdotally, I've recently started taking them a few days ago (alongside creatine, which shouldn't have much effect this soon) and it's had a surprising effect on my energy levels and focus. I feel like I'm getting out of it some of what worked for me about SNRIs, without the things I didn't like about em. I'm vegetarian and LAC in food comes mostly from animal sources, so it's possible I had a deficiency before.

As always with supplements, do your research on the source and confirm they're third-party lab tested so you know you're getting what you expect, and avoid proprietary blends. I ordered mine from Nutricost, which passes the sniff test and was cheap enough. It also seems like LAC/PEA might have some effect on seratonin so if you're taking any other med with a seratonin syndrome warning, you'd probably wanna talk to a doctor about it.

Anyone else here tried LAC and/or PEA?

cross-posted from: https://sh.itjust.works/post/44253660

I know this comic has already been posted on lemmy. But it's the only way that I feel captures my feeling, it's like I live on an unspecified timer, everyday, after that I go back to the can.

There's the constant pain, the lack of sleep and/or quality of sleep, waking up everyday like you've been run over by a train.

Then there's the extra sensitivity, and the "electricity", every time I sweat I feel an electric shock in my body. At many points, it feels like an active electric current is being run through my body, like I'm strapped to one of them electric execution chairs.

Then there are the constant brain fog/headaches, no matter what I seem to do, half of my brain is preoccupied with pain in random areas. My brain is like "Hey wassup, I know you're trying to focus,, or sleep, but your left leg is in a g o n y, because no reason really, maybe you moved too much. And so you have exceeded your uhhh free trial of leg for today."

Depression comes in play too, either because I don't go out much because of the pain, or because of the lack of sleep. And then depression fuels anxiety, and they fuel each other, and we have kick started our "mental doom engine."

Then there's the sleep. I have school coming up, it is absolutely necessary that I stick to a schedule, except that won't happen. Because the only way for me to fall asleep, is to be at that point when you're so sleep deprived that you can't keep your eyes open. I have tried at many points to use this my advantage, but it seems like this point is almost always at 5 or 6 AM.

I have abandoned traditional art, and almost anything that involves the use of arms. I can type on the keyboard pretty comfortably because it requires only my wrists and fingers, but even that starts to hurt after a while.

And lastly, it is almost treated as an invisible disability. "Your limbs don't seem to be broken/swelling", "You're not using crutches", "You're not on a wheelchair", and "Fibro my what?". I have been using sticks/staves/brooms in many situations to get up and move, and I use whatever object I can grab and get up with.

Since I grunt all the time, move slowly, use long objects all the time, I have always joked that I feel like an old person. As I'm writing this, my old person knee is acting up for no reason whatsoever, it just likes to be silly at times (night).

Tl;Dr: The comic I posted, I guess.

Thank you for reading.

Hello all, checking in to see how y'all are doing. I've had a few good daysbunt now I'm stupidly pushing a fatigue flare back to help a young family member before he goes home. Crash is incoming next week, a day or two after the kid leaves.

It’s been nearly 15 years or maybe even more since I’ve started trying to find help for all my symptoms. Mostly I ended up feeling crazy… (“Am I gaslighting myself? I must be.”) So much happens internally that you can’t see, can’t share. You sound like you have the flu 49x a year. People don’t understand just how tired you are. What the aches and pains are like… so constant, drumming, sharp, dull, here today and over there tomorrow! Everything is worse because nothing makes sense and no one understands, even the ones that really, really try.

I don’t know how to feel about the diagnosis yet. I have a lot of reading to do, to start. Any favorite resources, books, educational materials (for myself or my partner?). I’d love to hear how others cope, too, if anyone feels like sharing. Feels like I’m the Queen of Random Self-Care Interventions and always doing something or another for my physical and mental health. Just hearing from others would be awesome; it’s so strange to find a word exists for all of these symptoms, all this time.

I was tired this weekend so I stayed in and rested. Now I’m at work today and everything is aching. I think resting on the couch let everything tighten back up? I hate when I do this and know better. Fibro paradox. Sorry to rant but no one else gets it. 😔

Sounds almost crazy saying that and to be honest I’m not really sure how to explain it. I don’t want this to sound like I’m complaining for what could be perceived as mild symptoms. I want to use this post mostly to laugh at my ignorance and maybe as a warning to others. For some context I do have moderate ADHD and I’ve definitely been over working myself these past few years. I have been having my regular fibromyalgia symptoms throughout this time but decided to ignore it. Telling myself I had to get through the day and I could take some pain killers later. Now I guess I’ve been doing this so much that I “forgot” all about my fibromyalgia. I ignored it and just pushed through, to the point that I’ve been able to not notice my lingering chronic pain as much. Sounds great right, I somehow managed to mind over matter this. Well the inevitable happened. For the past months I’ve been having the worst symptoms I’ve ever experienced. My chronic pain reached a point that my bad day pain killers felt like I took a Tylenol instead, my fatigue has me feeling like instead of sleeping my body decided to participate in some sort of triathlon, and the muscle spasms and my pain sensitivity have reached a whole new high. I was going crazy trying to figure out what was going on. It wasn’t until I started venting about my back pain to a co-worker who asked why I had such high dosage pain killers that I remembered all about my fibromyalgia, and realized I’ve been ignoring it for a little over a year. So yeah, all that to say don’t ignore your symptoms as they will come back with a vengeance.

Hello everyone! I just wanted to get this community created so that we have a place to be while Reddit will be going dark and also if you decide you do not want to use Reddit anymore.

Reddit mods, I will make you mods here and just not do anything mod wise myself and basically just hand it off to y’all. Just wanted to get it going asap.