Where is everyone from and what treatment works for you?

Carmen from the Oregon Coast. I’m 64 and have had fibromyalgia for probably 45 years, based on symptoms (per my former physician). I was diagnosed around 30 years ago. There was little known about it in 1997-98 and nothing in 1981. (I often was told it was in my head, a frustrating reaction to many female complaints.)
Since pain meds and mild muscle relaxants are not a good idea for me (recovering addict, 28+ years), I use ibuprofen for acute pain, glucosamine chondroitin and CBD for long term pain management, and I try to get the needed amount of sleep. (This can vary with age.) I don’t know if my mental health meds have any bearing on my symptoms one way or another.
Stretching and mild exercise are recommended, but I’ll admit to not doing much of either for some time. I did get a foam mattress cover for my bed to soften the pressure on my hips, and I use a heater mattress pad in low-med setting to help relax during sleep.
If anyone has any other ideas or suggestions, I’m open to them.

@hraka13 , thank you Carmen for your message! Nice to meet you. It is unfortunate that we need to take upon ourselves to find a way to cope with this condition . It is frustrating that even speaking to our doctors that suppose to be helping us act and think that it is all in our head. Nobody can really understand how we feel until they are in our situation. Which sometimes i wish they could feel it so that they can experience how hard it is to live with this pain.

Hi, I'm Mags and I live in Ireland. I'm 71 and had fibromyalgia diagnosed 6 years ago, although my symptoms probably go back 10 years. I take duloxetine and amitriptyline at night, helps with pain and sleep, also magnesium threonate, which gives vivid dreams but helps me fall asleep more easily. I've recently started a trial of low dose HRT to see if it will help. I find warm, dry weather improves my pain, am currently in Spain for 3 weeks as Ireland has been wet and very cold this winter. Massage, hot baths, CBD help me. I also do some meditation and gentle chair yoga. I try to pace myself physically and socially. It's been difficult but nice to find a group like this! Thanks!

Hi my name is Elaine and I live in Saskatoon, Saskatchewan Canada. I just turned 75 and I was diagnosed in the early 1990’s though I believe it began with trauma in early childhood. I think I have tried pretty much everything out there. Currently I am on Suboxone and Tylenol Arthritis for pain, Zopliclone for sleep and am weaning off duloxetine for depression. Duloxetine is very difficult to get off of and I suffered severe depression twice that lasted weeks while taking it. I am down to 39 mg from 60 mg in just over a month. I removed some of the beads from the capsule to wean off more slowly. I use topical cannibas cream that my husband makes and it works very well. I also have interstitial cystitis and have infusions in my bladder every two weeks to keep that in control. Over the years I have had pretty much everything that can be removed surgically. It started with my appendix when I was sick, found out years later there was nothing wrong with it. Then my uterus, a few months later one ovary and a few years later the other ovary and my gallbladder at the same time. A couple of years ago part of my colon was removed as I had diverticulitis almost continuously for over a year. This all sounds bad but I live a pretty good life in spite of my problems. I have a supportive husband kids and friends.i have always taken high quality supplements and been willing to try alternative medicine. I really hope those of you in excruciating pain find some relief and are able to carry on pain or not. Hugs to my fibro friends!🤗🙏💕

@magsm, hello Mags! Nice to meet you! It is nice to know someone that is going through the same because we can support and relate to each other. Thank you for sharing your story and how you’re dealing with it. You’ve mention that you started with a low dose HRT? Do you think your fibromyalgia relates to hormones? I am currently experiencing some of perimenopause symptoms which puts me in a confusing position because both peri and fibromyalgia symptoms mimics each other. My primary doctor is no help since he dismiss me when i discuss with him how i am feeling. I’m working with my OB to see if there’s anything that will help with the peri symptoms. It’s already bad enough to experience the fibromyalgia pain and adding peri symptoms to it is no fun at all.

A bout of Covid in 2021 triggered bad flares of fibromyalgia for me, with headaches, widespread pain and severe insomnia. It took me two years of doctoring for the various symptoms to get diagnosed. Looking back, I think I've had it for many years but it only flared up for short periods of time usually during the change in seasons, so I thought it was bouts of the flu.

What cured me, or put my fibromyalgia into remission, was LDN - low-dose naltrexone, which I started taking in early 2025. I encourage all fibromyalgia sufferers to try this medication. 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 a few 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.

Here's one article on it, there's any more on-line: https://www.verywellhealth.com/low-dose-naltrexone-ldn-for-fibromyalgia-cfs-716070

@bevcalvil
I heard a podcast by a UK doctor who sees patients with complex menapausal symptoms. She found that HRT sometimes improves fibro symptoms, including brain fog and fatigue and feels its worth a trial in peri or postmenopausal women, if there are no contraindications. Check Dr Louise Newsome online
Best of luck 👍

@bevcalvil, we often have to be our best - and sometimes only- advocates. Another “problem” with fibromyalgia is that not everyone has the same symptoms or level of them. It could be that I’ve had it so long but I tend to “ignore” much of what other people find debilitating. Things like the constant pain or discomfort or being tired a lot. My best friend was diagnosed much more presently and it has kicked her a**. Me, however, I’ve dearly with it for decades and for almost have that time I self medicated. That’s how I know that pain killers and other mind and mood altering drugs bring relief, but they have their own problems for this addict in recovery. It’s a trade off. I deal with what I can and the rest is gonna happen whether I accept it or not.

@magsm, what about post-menopause? I can’t take any meds or herbs (St John’s wort) that are absorbed thru my liver since I am in carbamazepine (Tegretol) for my bipolar II disorder. Long term use already has skyrocketed my cholesterol but, fortunately, no liver damage.
Is there hope for people who can’t or don’t want to take additional meds?

@daisy17, it shows that naltrexone is a narcotic. For some of us, that’s a concern. I’ll look into it to see if it’s considered “addicting”.