I usually post on the chronic pain board, but I just happened to see your post... Although I do not have fibro, I was on LDN for 2 yrs for complex regional pain syndrome (CRPS), which does have some similarities to fibro. I'm temporarily off of the LDN because of some recent surgery, but hope to get back on it soon. Overall, the LDN has worked well for me in conjunction with ketamine to control my CRPS symptoms. For me, it works much better than opioids or other more traditional medications for neuropathic pain ever did. Plus side effects are practically non-existent, and any side effects that you may experience (mostly insomnia) are usually transient.
I am lucky, though, in that my doctor is very experienced in using LDN, and even lectures to other doctors about
LDN. He mostly prescribes it for CRPS, but also for some other neuropathic pain conditions (I don't know if he has ever used it for fibro, but my guess would be yes). Rockon is correct in that LDN is believed to work as a glial cell inhibitor. Glial cells are essentially "helper" or "supportive" cells within the CNS that have a variety of functions, including regulating inflammation and the immune response. Thus, inhibiting these cells reduces neurogenic inflammation within the central nervous system, and supports the immune system (hence what Rockon mentioned about
LDN often improving Hashimoto's thyroiditis -- which is also something that I have personally experienced). In addition, LDN also also causes an increased release of endogenous opioids by temporarily blocking opioid receptors (sounds counterintuitive, I know), which also helps with pain.
Like Gettingby mentioned, one downside, however, is that you cannot take opioids in conjunction with LDN, as it will block the effects of the opioids, and put you into withdrawals (if you were on them chronically). So if you are considering LDN and are on opioids, you will have to stop them first. Likewise, LDN also needs to be stopped several days before any surgical procedures, as it can interfere with some of the anesthetic & pain relieving agents (again, mostly opioids). The one other major downside to LDN, is that it can take weeks to months (and apparently even upwards of a year in some people) to really start seeing any benefit. So you have to have patience and be willing to stick with it. But when it works, it seems to work very well. I will also say that LDN is NOT helpful for acute pain, as glial cell activation contributing to neurogenic inflammation & pain is feature of chronic, but not acute pain (hence why I'm currently still off the LDN even after surgery, as I had to temporarily go back on opioids to control my acute post-operative pain).
If you would like to do more reading about
LDN, two good websites that my doctor suggested to me are ldnresearchtrust.org
. You also want to make sure that you are getting your LDN compounded by a pharmacy familiar with LDN (there is a list of reputable pharmacies on one of the websites I listed above), as what fillers, etc they use do matter. I use Belmar Pharmacy, which is one of the big ones for LDN. They are in CO, but will ship anywhere in the country (I live on the east coast). I also know that there is a research paper specifically about
the use of LDN for fibro that is available on one of those websites, if you are interested.
Anyways, good luck with the LDN. If you have any other questions that I can answer, I'd be happy to help. I hope it helps! And don't get discouraged if doesn't work right away -- as I said, it can take a while to work, so you have to stick with it if you can.
Post Edited (skeye) : 11/9/2017 9:35:19 PM (GMT-7)