I’ve seen quite a few posts of people asking questions about LDN and looking for opinions—I thought I’d copy an exhaustive post I made in the long-COVID subreddit about it. I’ll try to cut out parts that are post-acute COVID specific, but if you see something that doesn’t seem to fit fibro specifically…that’s why. My fibromyalgia symptoms I’m hoping that it may be of use to someone, who is thinking about trying this out. It’s completely changed my life!

It’s just also very finicky, and poorly-understood outside of pain management, so two people will experience the treatment the same way. Strap in, because it’s going to be detailed.

Dosing info:

I started at .5mg and titrated up—.5mg, every 10 days. Once I hit 1.5mg, increases were made 1.5mg at a time. I think it took me about 3 months to hit 4.5mg. I stayed at 3mg for a few extra weeks, before deciding to make my last increase—I’m always trying to do the lowest possible dose of anything.

Start at the lowest dose possible. I ran out of meds and had to restart at 1.5mg—the insomnia was awful, for about two weeks. I struggled to sleep through the night.

It’s not uncommon for LDN to take a while to work. I noticed small improvements, immediately, but the most significant benefits came after about five to six months.

My health background: **I have terrible autonomic function,* Orthostatic hypotension, hereditary hemochromatosis and fibromyalgia. MCAS symptoms. Low blood pressure. Possible undiagnosed connective tissue disorder—ligaments and bones consistently popping out or getting injured, unexpectedly. Pretty consistent pain, but manageable.

After COVID alpha, 2020: - Memory problems, specifically with word and name recall I’m not sure if it happened immediately, but I could no longer remember names of people I’d known for years. If I did remember a word, I often mixed it up with a word that sounded similar, but made no sense (think “conscripted” instead of “constricted”). Antihistamines helped, a lot, but did not solve the problem. - Acquired “tunnel-vision.” I lost the ability to think of more than an immediate task, at hand. If I had interests before, I didn’t now—my health consumed my entire being. Anxiety ruled my life and my personality ceased to exist. No more creative pursuits, no nothing. I no longer had my “okay brain,” and feel dumber than ever. - Exhaustion. As a person with bad health, but ADHD and an annoying amount of energy, this was a hard pill to swallow. Getting out of bed now required a process. - Pain. My fibromyalgia diagnosis predated COVID; but, if my body was yelling before, it was screaming now. - Words and thoughts moved through jelly. I could no longer visualize or imagine things. Everything felt jumbled and my sentences reflected that—it was not uncommon to find incoherent sentences, on social media. - Bad, confusing dreams. Dreams longer had a story, nor cohesion, and caused overwhelming anxiety. I often woke up scared or uncomfortable—my favorite part of sleeping became the most dreaded part of my day.

After LDN: - My internal dialogue is clearer. Thoughts have cleared up, by a lot. I can now visualize things —I’m working on finishing a remodel of my house and have been able to decorate, with little problems. - My interests have returned. I’ve been working on art and photography again. I’m back in school, working in healthcare working on school to advance in a career in that field . - Pain has reduced to about 3-4/10. considering that this was about 6/10, every day, I’ll take it - I am dreaming regularly again, and it’s not always a bad thing. I had a lucid dream, a few weeks ago. - I’m no longer mixing up words. I forgot to take my antihistamine, yesterday, and nothing bad happened. While I sometimes still feel like I’m reaching through jello to get a thought out, the word mix-ups have stopped completely. - Memory is actually improving and I’m seeing flashes of my former self. More than a few people have pointed out an “excellent memory,” that I thought I would never see again. I’m not sure if it will ever be back to “normal,” but I’ll take this progress!

Sourcing LDN - Always check the LDN research trust first—they can locate something in your country, if you’re outside America. - If you’re in America, your pain management doctor can you write a prescription to a compounding pharmacy. It doesn’t matter if you have chronic pain or not—a pain management doctor can prescribe it for pain. It’s not a controlled substance, so there’s no reason for them to be stingy about it. Don’t be ashamed to ask for it by name. - Ageless RX. You’ll pay a little more for it, but they will also prescribe. If you don’t have insurance, this will beat paying for the office visit to get a script. They also carry metformin and other experimental treatments, if you like to use yourself as a Guinea pig.

TLDR: Naltrexone good, brain better.