Hello everyone, I thought I would take a moment and share the top three things that have helped me the most with my fibromyalgia symptoms. I started taking low dose naltrexone about 4 years ago. This took the edge off the debilitating pain. Just the edge. It wasn’t the all in all. I take 4.5 mg every morning. Then a little over a year ago, I started physical therapy where I received myofascial release twice a week. This has been extremely helpful. My muscles, ligaments, and tendons will spasm or are generally tight or are not flexible. Myofascial release helps keep my body moving. Probably the most helpful medication for me has been Savella. I take 50 mg twice a day. It has reduced the number of fibro flares by over 50%. I’ve been taking this medication for about 8 months. This medication comes in a range on dosages. For me, the maximum amount my body can handle is 50 mg twice a day. Anything more and I have HORRIBLE side effects. My doctor also started me out on a low dose to begin with and then slowly increased the dose over a period of weeks. My advice, if you’re on a medication and you’re having side effects, talk to your doctor to see if there is a lower dose of that medication available that will still be effective. Take care! Freedom
Yup, and if you’re as adventurous as me, divide pills by splitting or pulverising. Had success with that with my blood pressure med, didn’t work for various lipid meds tho (statin, ezetimibe): too many excipients I don’t tolerate since the jabs. A bit better scraping off the coating with a small screwdriver, but not good enough to live with.
This I can so well imagine. Essential what I do in self-treatment with local pains.
Very interesting, as milnacipran/Savella is the 3rd/last FDA approved med for fibro, but has the least evidence (and only for a minority), so not approved in Europe. Goes to show it may be worth trying even the least probable treatments, if they are viable. In my case it would take place of GABA, which I’d have to adapt, but with the added problem of the excipients which floor me.
I’ve been on it since Oct23, starting extremely low dose (0.07mg), now up to 3mg (upon the 3rd time I tried to get it that ‘high’). It made quite a difference to my energy (up from 10% to 20-30%) and other areas, like sleep, but any trigger like doc treatments and that depletes for weeks to months. Now adding creatine has helped a little bit, too, and I’d run out of carnitine and left it to see, which I after a time realised wasn’t a good idea…
For others I’d now definitely recommend trying LDN, starting with VLDN - very low dose, after I’d been skeptical for years.
But altogether fibro is praps not my biggest problem anymore, it’s post vac Long Covid / mast cell / immune system, which may all be connected with each other and with fibro, but makes understanding and treating considerably tougher…
So good that you have these 3 things! Savella may be a rare one, but LDN and myofascial release and similar manual treatments, using youtube physios for local pains, I’d definitely second.
Savella 100mg twice a day, cbd, prayer, and moving my body, I try to workout 5-6 days a week. Gone from having flares most days to one every 3-5 months.
I’m curious, how has CBD helped you? And, how do you take/ use it? I’m glad that exercise has been helpful for you. It hurts soooooo much to even walk.
Had to work up to doing pre exercise, sitting still for long periods makes pain worse for me.
I use gummies. tinctures orally & balm for body. There is a couple that have the smallest amount of thc that helps at night and place I use can ship legally to all states. I’ve even gotten some very good cbd gummies from Groupon. Discover cbd is place that ships everywhere
Yep, me too! So I make sure I’m slightly twisting / stretching / exercising all the time, even when lying in bed I lie in twist-stretched positions, and whilst sitting I either squirm a lot or use a swiveable adjustable bar chair. Pain is better now tho, from supps and LDN I think.
Same way. ADHD and fibro don’t mix well for sure lol. Found turmeric twice a day helps & Savella. Can’t take NSAID’s
Another LOL about that is the 1-2 studies that found 45% of people with fibro have ADHD. Looking at those in detail, I found they had as non-ADHD-experts just used the ADHD criteria, which for adults is essentially “brain fog”. So they found out 45% of people with fibro have brain fog: who’d’ve thought! 
(But the good thing about that fun thing is realising that most ADHD-tips can help us manage fog.)
LMBO!!! I also found out the 75% of people with ADHD have hyper mobility. I literally won the trifecta with this cause have all 3. Family gets shocked about laughing at these things, it’s either laugh or cry about.
They diagnosed me cause of the H part