LDN dosing for fibromyalgia and ME/CFS

I was diagnosed with fibromyalgia 15 months ago, after years of the usual FM experience: countless visits to the ER, hospital stays, tests, meds, doctors who dismissed my symptoms, etc. I now have a wonderful rheumatologist, who diagnosed me and a great primary care dr. I started on Cymbalta a year ago—started at 20 and soon was up to 80—which really made a difference. But I was still having frequent pain flare ups, and my PCP recommended low dose naltrexone. She had used it with other patients, with good results.

I read up on it (I did have to dig to find good sources) and decided to try it. I was on 1 mg for 2 weeks, then 1.5 for 4 weeks, and have just started on 2. My doctor is going up on dose by .5 every two weeks until we reach the right dose or 4.5, whichever comes first. I have already noticed an improvement in my over all pain level and have a bit more stamina. From what I've read/watched, it may take a while to feel the full benefits. Generally, the side effects are minimal for most people, and that's been true for me. I take it in the morning, since one of the common side effects is "weird dreams," and I have plenty of those already because of my sleep disorder. For most people, the weird dreams subside once the body adjusts.

I'm lucky to have a PCP who is somewhat familiar with this drug and willing to look things up if necessary (e.g., she checked on the protocol for increasing dose before writing more prescriptions). Most doctors don't seem to know much about it, but I'm used to that with FM. Based on what I've read and educational videos I've watched, I'm hopeful about this drug. I'll circle back in a while to update you all on how it's going. In the meantime, here are some useful resources.

LOW DOSE NALTREXONE

Online Articles

LDN for Fibromyalgia
https://www.verywellhealth.com/low-dose-naltrexone-ldn-for-fibromyalgia-cfs-716070
LDN and POTS (Postural Orthostatic Tachycardia Syndrome)
https://pubmed.ncbi.nlm.nih.gov/37706146/
Drugs.com Overview
https://www.drugs.com/medical-answers/low-dose-naltrexone-ldn-3570335/
Pretty Technical, But Somewhat Helpful
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3962576/
YouTube Videos

*Excellent Comprehensive Presentation on LDN

I was diagnosed with fibromyalgia 15 months ago, after years of the usual FM experience: countless visits to the ER, hospital stays, tests, meds, doctors who dismissed my symptoms, etc. I now have a wonderful rheumatologist, who diagnosed me and a great primary care dr. I started on Cymbalta a year ago—started at 20 and soon was up to 80—which really made a difference. But I was still having frequent pain flare ups, and my PCP recommended low dose naltrexone. She had used it with other patients, with good results.

I read up on it (I did have to dig to find good sources) and decided to try it. I was on 1 mg for 2 weeks, then 1.5 for 4 weeks, and have just started on 2. My doctor is going up on dose by .5 every two weeks until we reach the right dose or 4.5, whichever comes first. I have already noticed an improvement in my over all pain level and have a bit more stamina. From what I've read/watched, it may take a while to feel the full benefits. Generally, the side effects are minimal for most people, and that's been true for me. I take it in the morning, since one of the common side effects is "weird dreams," and I have plenty of those already because of my sleep disorder. For most people, the weird dreams subside once the body adjusts.

I'm lucky to have a PCP who is somewhat familiar with this drug and willing to look things up if necessary (e.g., she checked on the protocol for increasing dose before writing more prescriptions). Most doctors don't seem to know much about it, but I'm used to that with FM. Based on what I've read and educational videos I've watched, I'm hopeful about this drug. I'll circle back in a while to update you all on how it's going. In the meantime, here are some useful resources.

LOW DOSE NALTREXONE

Online Articles

LDN for Fibromyalgia
https://www.verywellhealth.com/low-dose-naltrexone-ldn-for-fibromyalgia-cfs-716070
LDN and POTS (Postural Orthostatic Tachycardia Syndrome)
https://pubmed.ncbi.nlm.nih.gov/37706146/
Drugs.com Overview
https://www.drugs.com/medical-answers/low-dose-naltrexone-ldn-3570335/
Pretty Technical, But Somewhat Helpful
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3962576/
YouTube Videos

*Excellent Comprehensive Presentation on LDN

Hi! I have central sensitivity/chronic pain and fibromyalgia, along with other chronic conditions, and I take LDN! It helped noticeably with my fatigue almost immediately when I first started taking it, but I can’t say I noticed it improving my other symptoms, i.e. GI symptoms and pain sensitivity. It’s still worth it for me though to help the fatigue.

When my PCP brought it up to me (she works in Integrative Medicine and has many patients with different chronic pain disorders), and I did a lot of research (otherwise known as Googling, carefully) before I decided to start it. She frequently prescribes it (I can also give you the name of the specialty pharmacy we use that is reputable and we found has a good price if that helps at all), and specially we agreed I would titrate slowly. That’s what she does with everyone, but for me in particular with my condition, we know already that my body is very sensitive to medication, new activities, environments, etc.

Our plan was to start at .5 mg and increase every 2 weeks by .5 mg until I got to a goal of 4.5 mg (or if it seemed like it felt like enough with less, that was also fine) and we’d see how that went for at least 3 months. The rationale was that of the studies she was aware of and that I found (though there aren’t many and they’re usually small), most found that there was no further benefit for those who took more than 4.5 mg. Some people had enough benefit at smaller doses—it seems to be very individual.

HOWEVER, it turned out that .5 mg was way too activating for me—I felt hyper-alert on my first dose. Unsure if it was a fluke or the placebo effect, I tried it the next day and then I couldn’t sleep, and just felt too uncomfortably “up.” So I had to slow my roll and go down to .25 mg. I titrated by quarter milligrams from there.

All that said lol (long way for me to get to your question), oddly with all my searching intermittently over a year and a half, I have not come across any Mayo Clinic information about it. Because there’s not as much “high quality” research on it, and LDN seemed to fly very much under the radar until all the long COVID cases, despite being so low risk, I’m doubtful there would be much out there.

When I was first looking into LDN, it seemed to me the recommendation to titrate was coming more from the personal experience of the providers, compounding pharmacists, and patients. My sense was it was a more practical approach to minimize any side effects, especially when most people turning to it already have problematic symptoms.

I doubt there’s a high risk to start right off the bat with 4.5 mg, but I’m almost never comfortable starting a new medication at the conventional dose because of my central sensitivity. I wasn’t comfortable running the risk of experiencing potentially uncomfortable (though not harmful) side effects (even though it happened anyway ha). It’s also harder to tell if you might have had a response with less medication—and since most people have to pay out of pocket for LDN from a compounding pharmacy, that might make more of a difference (it did for me).

It probably comes down to how comfortable someone is with the risk of starting with a higher dose.

This is from a few years ago, but a review mentions this about patient instructions to those in the study: “ A “low and slow” approach to titration of LDN dose was used, and patients were verbally counseled that, vis-à-vis LDN therapy, “more is not necessarily better.”
https://www.practicalpainmanagement.com/treatments/pharmacological/non-opioids/use-low-dose-naltrexone-management-chronic-pain
And there’s a link to a podcast episode on this page from Weill Cornell Medicine I came across when I first started researching. They interview the Division Chief for Pain Management; he mentioned he starts patients typically at 1.5 mg and titrates from there but some people need less. I could find any specific research to support titration specifically.

Sorry, this post is now getting super-long, but I almost wouldn’t have found out about LDN, so I always like to share my experience if it’s something that might help someone else.

If it helps at all: I mentioned above I had to start very low (.25 mg) because of my sensitive, and worked up to 4.5 mg, increasing st first by a quarter milligram every two weeks. At some point, I got impatient and if I didn’t have adverse effects after a week, then I increased again to speed up the process. I take it in the morning (again, leery of side effects), and found it helped with my fatigue.

Unfortunately, I got COVID last November and it exacerbated my symptoms. My fatigue returned with a vengeance, and my PCP recommended titrating to 6 mg because she inherited some new patients who take a higher dose with good results (she’s now the only person in the clinic who prescribes LDN after someone left). There are anecdotal reports of individuals taking 6 mg I found, but only research that said there wasn’t an additional benefit.

Now, I take 6 mg every morning. My dad has PMR (an inflammatory arthritis that causes extreme fatigue), and he takes 4.75 mg because when we tried to go past that point he was bouncing off the walls.

But, hope that helps, and hope you find some relief, whether it’s with LDN or another way. I do think it’s worth a try and agree titrating is the less riskier way to go.

Hi! Thanks for sharing so much information re: your experience with LDN. I’m looking for a reputable specialty pharmacy with a good price. Would you mind sharing the information about the pharmacy you use? Thanks!

Hi! Thanks for sharing so much information re: your experience with LDN. I’m looking for a reputable specialty pharmacy with a good price. Would you mind sharing the information about the pharmacy you use? Thanks!

Thank you!!! This is extremely helpful. I found that pharmacy yesterday, so I know precisely which one you’re talking about. If my local compounding pharmacy isn’t easy to work with or is too expensive, it’s great to know I have a quality alternative. Thanks again!!!

Thanks for this; it’s so helpful to have the resources gathered together. It’s been a while since I researched and I’ve not seen the POTS article, so thank you.

I wish someone would do larger studies, so it wouldn’t feel like this hidden thing. Like you, I’m lucky to have a PCP who had experience with it and was comfortable prescribing it. Some specialists get so weird about prescribing it or a compounded medication.

I take it, but it’s helped most for fatigued and not as much with pain sensitivity. I have central sensitivity syndrome, HSD, POTS and fibromyalgia and an inflammatory arthritis, too many things. I’m glad you’re finding it helpful.

Sure, no problem! I use Care First Specialty Pharmacy in New Jersey (there is a pharmacy of the same name in another state; I don’t think they’re related). My PCP brought it to my attention because she uses it for most of her patients and according to her had the best prices. I was previously using a different pharmacy and found this to be true. I’m in Illinois; they ship across the country and I have at least one other doctor that’s familiar with them, so I think they are reputable. The techs and pharmacists are helpful too.

The tradeoff as compared to my local pharmacy is that it can take a bit longer for them to start processing a new prescription or refill, at least two business days in my experience, unless you call them yourself after your script gets sent. And sometimes if I have to call, I’m on hold for a while, but not an excessive amount of time. But once your prescription is established, you can just call into their automated system to request refills and they’ll send you text and/or email confirmations. And like with any specialty pharmacy, it takes some time to process it.

But they can do any formulation. If you’re okay with tablets, that’s least expensive. They can make any size (I think—I take 6 mg, which is an unusual dose) scored tablet for .5 mg and higher. I used to get 4.5 mg tablets, a more common dose, so they can probably do it in half milligram increments depending on what you need.

I hope it helps no matter where you choose!

Thank you! I've been having problems getting my prescriptions in a timely fashion from my local compounding pharmacies—I was without my LDN from Thursday through Sunday because of a delivery issue, and the previous pharmacy needed two days advance notice before they processed it. I've been looking for a mail order pharmacy, so your post is very timely!