Hi @ripley- I’m so sorry for the delayed reply. I wrote this a few days after seeing your question, only for it to get eaten by the intense when I tried to post it, then the same thing happened earlier today.

But sure, I’m happy to share.

I noticed your posts in both the PMR group and here, and I’m so sorry you’re navigating the chronic pain loop.

I wanted to preface sharing my LDN experience by saying first I feel it’s important to rule in/out PMR or other conditions if need be. One risk factor for developing fibromyalgia is untreated or poorly managed pain from another condition. And since fibromyalgia can overlap with other conditions, one can feed the other, or the treatment’s not always the same. And it is very possible and well-documented someone can have an autoimmune condition with negative inflammatory markers (I’m one of those).

And second, there is treatment for fibromyalgia. Unfortunately, it’s not straightforward, simple, or easy to access… And while medication has worked great for some, for those of us who don’t tolerate or have concerns about medication, it can be even more challenging (I’m also one of those…I don’t tolerate medication well =\) And all the barriers are compounded because many providers treat it like a throwaway diagnosis, and we can internalize that too.

It’s been my experience that the most helpful (and some would argue the research suggests the most effective with the least side effects) treatment has been PT and OT designed specifically for chronic pain and incorporates pain neuroscience—it gets to the root of chronic pain, where it’s happening in the brain, and focuses on getting you back to what you want to do, even if it might look different than it did before. I don’t believe LDN alone would be effective enough for me to make up for all the pain rehab work I’ve done.

Oohkay, I know that’s a lot of preface. I’ll get off my chronic pain soapbox now >_< Just felt like I had to say that so as not to make it sound like LDN is a miracle drug.

To your questions:

I have multiple chronic conditions; we suspect the time it took to diagnose and treat it properly and some really wrong turns with doctors and PTs that exacerbated my condition(s) eventually led to central sensitivity syndrome. This happens when the central nervous system (brain) experiences maladaptive changes in an effort to protect you from pain. If pain is normally meant to be a warning sign in a dangerous situation, it starts setting off a fire alarm in response to more and more situations.

Within that, I have small fiber neuropathy, POTS, seronegative spondyloarthropathy (an inflammatory arthritis), hypermobility spectrum disorder, and I was just diagnosed with fibromyalgia. Getting COVID last year may have been the drop that tipped my cup over into fibromyalgia.

I primarily got interested in LDN for the fatigue and GI symptoms I have related to those conditions, and also for the potential to improve my pain sensitivity, plus it’s reputation for having nearly no side effects (because I am sensitive to medication).

Much of the little research out there I found while checking it out suggests it helps with fatigue. Some studies show it’s helped IBD or worked as an anti-inflammatory. LDN calms glial cells, and I’ve read more recently that scientists are researching the role of overactive glial cells in chronic pain.

A neurologist I saw brought it up. She doesn’t prescribe it, but knew if it from a pain specialist she works collaboratively with to assist her patients. I didn’t feel comfortable seeing him, but what she told me about LDN’s proposed mechanism of action and low risks, I was intrigued. I asked around with my care team, and it turned out my PCP has experience with it. She works in an integrative medicine clinic and learned about it from one of her colleagues.

Regular naltrexone has been about a long time and has a solid safety profile. At a fraction of the regular dose, LDN is potentially even more benign. The most reported side effects are vivid dreams, symptoms of anxiety or insomnia. My neurologist explained the proposed mechanism of action is that LDN temporarily inhibits endorphin receptors. After a time, the body/brain believes you’re low on endorphins and creates more to make up the deficit, but eventually the LDN stops blocking the endorphin receptors and now you have more endorphins circulating.

For some people, this might create the same benefits as a “runner’s high” or doing something that boosts your endorphins naturally, improving mood; energy; digestion and maybe even pain. It sounded like such an elegant explanation. It was like in pill form a whole bunch of the things I was already trying to achieve through PT and other means.

Looking at it that way, the side effects make more sense. But the half life is so short that with a negative reaction, I figured I could stop it and hopefully recover quickly.

I tried to avoid the side effects by taking the LDN in the morning instead of evening (it’s usually recommended at night because that’s when endorphin release peaks, apparently). At the beginning and a few times when I increased my dose I felt too activated, too alert, and had trouble sleeping. That faded fast after I adjusted the dose and titrated more slowly. Otherwise, I didn’t have any other side effects.

The plan was for me to start at .5 mg and titrate every 2 weeks by another .5 mg until I got to a goal dose of 4.5 mg. But, I had the above side effects so I went down to .25 mg and went up every 2 weeks by .25 mg. After a while I got impatient and started waiting just 7 days before increasing. I only remember having issues with side effects a maximum of three times in all the time it took me to get to 4.5 mg.

After I got COVID and the fatigue and other increases in my symptoms didn’t clear, my PCP had me increase to 6 mg. Most research shows little or no benefit above 4.5 mg, but there are random reports of people taking 6 mg. My PCP inherited some patients who were on a 6 mg dose successfully. I don’t really notice much of a difference, but I just kept it up. Either way, I feel it was worth it.

And…that’s my marathon explanation! Hope it helps someone out there.

Here are two articles I found helpful while considering it:

I have been a long hauler since April 2022. Because of Me/CFS, I started LD Naltrexone 1.5 in April and after a few weeks jumped to 3.0 and then shortly thereafter 4.5. That titration was too quick for me, I was very irritable , jittery and had worse insomnia. I backed off to 3.0 which I tolerated well. I found that I have to take it at 10:00 in the morning to avoid worsening my insomnia. Just last week I have added 4.5mg three times and 3.0mg four times and that seems to be helping me to have slightly more energy and not as jittery or irritable. It does however affect my short term memory (worse than usual) but my PEM crashes seem shorter duration.