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I am newly diagnosed for Fibro, suffered for the last 10 years the most (guessing I had it since I was 20yrs old).. making me change my whole life, leaving the job I loved of boarding and training horses for over 20 years, sold my farm and closed my business. I moved and saw drs in two states and was told I was getting "older" (turning 50) peri-meno (am not in), depression (not depressed, I'm mad at my body!) and all that. When I was diagnosed at Mayo in MN... I knew I did not want antidepressants. I researched LND and Tonmya.
I am on my 3rd week of LDN. I moved up to 3mg yesterday. I will say the 1.5 worked great for the first two weeks..it stopped all the buzzing in my body and I immediately felt better! I had to stop myself from overdoing it! When the pain is gone, the energy is back. But then I was finding it "wearing" off by 2-3pm... I would take flexeril then on bad overdoing it days.. or just motrin.
I feel alittle cloudy today on the 3mg, I'm sure its my body getting us to it.
I read people on here are starting it slowly, but my script has me to 4.5 in 3 weeks? 1 week 1.5mg, then 1 week, 3mg, and then 4.5. I hope that's not too fast? Also I hope my body doesn't get use to it too.. I guess we'll see how the 3mg works this week... cause if it works, I won't bump up yet.
I get it compounded at Avera in Sioux Falls, SD. They quoted me at 48 bucks for 30 day, 4.5mg.

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Replies to "I am newly diagnosed for Fibro, suffered for the last 10 years the most (guessing I..."

@hendriksgal I took a longer time to get to the 4.5mg dose, which was my choice. But my pharmacist advised me to take longer than three weeks. I didn't notice any positive benefits until I'd been on the maintenance dose for 1-2 months and then I had gradual improvement and today feel like I did before my symptoms flared up.

Looking back, I think I've had fibromyalgia for a long time, but it used to only flare up a couple times a year for 7-10 days, usually during the change in seasons. At that time, I thought it was the flu. Then a few years ago, it progressed to headaches, only on the left side of my head, that would last an about six weeks and then go away for about six weeks. I went to so many doctors for that and even had a biopsy of my temporal artery to rule out giant cell arteritis (GCA), which can be very serious.

When I got Covid in 2021, it triggered a major flare-up of body pain and I suffered with severe flares and terrible insomnia until I found LDN. I think it somehow triggered my immune system to get back to normal or something. I thank God every day for what seems like a miracle cure.

@hendriksgal The buzzing in the body! I feel that and do not know how to describe it it. It’s not a chill, not something running through my veins. Feels creepy. Sometimes just centered in my pelvic area. But that’s what it is. Buzzing. Does anyone know what causes that?

@hendriksgal

I have tendency to google questions specific to me and get answers that way, and then I go to the sites from which their info came from.

When I just asked that question; their answer was from the National Institutes of Health and it said LDN treats fibromyalgia by reducing chronic neuroinflammation and boosting natural pain relieving endorphins; it works as a temporary opioid receptor antagonist, triggering a rebound effect that increases endorphin production, lowers pain signaling and inhibits microglial cells (immune cells) in the brain to reduce fatigue and brain fog.

I just research, dig and dig until I can make sense of everything for myself. And then I speak with my physicians about what I found and because I can provide them the sites that I retrieved the information from; it helps me. There are a lot of research papers out there and they matter.