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LDN dosing for fibromyalgia and ME/CFS
Fibromyalgia | Last Active: Oct 9 10:56am | Replies (27)Comment receiving replies
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
How LDN Works
Using LDN for Chronic Pain
Dr. Brandy Rose, Naturopathic Doctor, on LDN Pain Relief
Fingers crossed!
Replies to "I was diagnosed with fibromyalgia 15 months ago, after years of the usual FM experience: countless..."
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.
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BTW, I have restless leg syndrome and have been on Ropinirole (Requip) for years. I had reached augmentation and found out that Ropinirole is a bear to get off of. Since I've been on LDN, I've been able to reduce my daily dose of the Ropinirole, and I'm hoping I'll be able to get off it entirely in the long run.