Fybromyalgia

Having fibro, lupus AND RA is a triple whammy. Give yourself credit for reaching out to this group for support. In short, your immune system is in full battle mode on your body 24/7, and it is little wonder you can't sleep. Do you have access to a hot tub or other whirlpool therapy? I find hot showers help with my pain, and it might give you some relief. As for meds, I have no suggestions (I'm not a doctor) except my own pain combo of naproxen sodium and Tylenol, subject of course to your own doctor's recommendation (liver and kidney issues can be exacerbated). Please know that many here are holding you in their hearts and care. I hope you will find some relief. As for the future, if it's possible, just stay in the moment. Anxiety and worry often make my symptoms worse. And find your people to surround you with love.

Physical therapy has been a game changer for me. It has helped me to become more mobile by making me stronger and giving me a sense of control over this disease. It has made me feel more positive about my future (I am 65). Maybe it can help you too.

Please don't give up. I felt the same way before I was diagnosed - 24/7 pain, spent all day and night in my bed, couldn't even walk around my apartment. I was terribly apprehensive of the future (I was 62, now 64). Had to stop working earlier than planned so was concerned about finances as well. I became very aggressive about finding doctors and searching out treatments. I have now found a dose of Lyrica, a dose of low-dose naltrexone, an acupuncture treatment schedule, and a compounded pain cream that all allow me to live somewhat normally. I also have Tonmya for days when the pain hits too badly for me to function. Mild stretching helps more than you would think - you just have to get over the hump of the first couple of days of doing it. I'm sending you strength!

What helped put my fibromyalgia into remission was LDN - low-dose naltrexone, which I started taking in early 2025. It's safe and had no bad side effects for me, except for vivid dreams (not nightmares tho). Drawbacks are that you must get your prescription filled at a compounding pharmacy, it's not covered by insurance, and it takes 1-2 months to work up to the maintenance dose and then can take a couple months to notice benefits. Also, I read that it doesn't benefit everyone. Once I got to the maintenance dose of 4.5mg/day, I started to notice less pain after two months, which continued to improve. Eventually, it also helped the severe insomnia I was having.

I got my prescription from a pain clinic, but since learned that my PCP also prescribed it. There's lots of discussion about it in this support group.
Here's one article on it, there's any more on-line: https://www.verywellhealth.com/low-dose-naltrexone-ldn-for-fibromyalgia-cfs-716070

Hey- I have done Somatic therapy. What’s different about this from regular therapy is it centralizes around releasing the past pains thru your body. Like all the things we talk about it’s trial and error. Each therapy, medication and PT affects us all differently. We are all warriors on this path. Stronger than anyone realizes. Cuz dammit… we look okay.

@leoandbear yes! And I look okay to me too. That’s a good thing, except when you go to your doctor with a new ailment (for me my body takes turns hurting different areas), so right now it’s my lower back and interstitial cystitis, headaches 2 weeks ago, TMJ also right now, sores on my tongue . None of the initial tests will show anything for any of these symptoms. It’s gotten to the point that I don’t contact my doctor anymore and actually that’s just not right. So I end up spending thousands on possible non-traditional cures, treatments, supplements etc. However my worse pain which was hips, thighs, sides of legs has gone away probably cause I’m using LDN, but again I had to search, determine, experiment on myself without the help of my insurance or doctor. I mentally exhausted and depleted of energy from looking for some help.

Weezie
I wanta check in with you. I’m not sure about others but I have had those feelings too. It’s difficult dealing with a chronic illness. I strongly recommend therapy. No one should go through this alone. I’ve had Fibro since I was 43 and now 71. Even those who don’t have a chronic illness need help throughout our lives. If money is a problem many therapists have a sliding scale fee. If you have health insurance, most cover a dozen sessions. It is not weak to have an antidepressant to help you thru this period. I am pulling for you. You are not alone with these feelings.

@jeannesf1
I get it! I’m experimenting with Tonmya. $900, but going to try for a month. If it helps hopefully my doc will help fight insurance to pay. On Medicare which means if on government program the Tonmya website says I can’t get their discount. I also don’t always check with doc too. Thanks for your reply! 💗

Sorry to hear this love, in almost the same exact boat, quite recent diagnosis and new to here, bed like it is a coffin is my thoughts exactlyy ! but we will fight this together, the world cant stop us that easily!!! Stay strong 💖

@lwmarcrum how can you afford Tonmya?! I wanted to try it but it’s $700 for one month WITH insurance. 😨