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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Everything aches


Senior Member
Wishful...a question for you. Would you go back on LDN?

Absolutely. For me it was 100% effective in blocking my neuropathic pain, and had no side effects. There were no problems going off it either. I intentionally missed doses occasionally, to see if the duration of its effects changed, and one day I did that and waited for the pain to return, and waited and waited. I just no longer needed LDN because the pain had stopped. It still flares up occasionally when my other ME symptoms flare up, but rarely lasts long enough to be worth taking a capsule (I still have some left).

This doesn't mean that LDN will work for everyone (it doesn't) or that some people might have problems going off it, but for me it certainly was a wonderful treatment.

I'll add that while it was wonderful for me, I still tried to minimize the amount I took. While the recommended 4.5 mg per day worked well, I dropped that to 2.5 mg by taking it sublingually, and then by alternating it mornings and evenings every second day, because it worked just as well at that level.