Please don't take this the wrong way but I'm very curious if either of you have heavily modified your diet in an effort to remove part of the pain cycle? A low inflammatory diet might help from my own personal experience with diabolical pain.
Actually yeah, have been basically eat a low-ish inflammatory diet for ~25 years. Ever since in my twenties, realized that I had some major health problem, took my general health very seriously, and have been eating healthy since then (eating a lot of fruits and vegetables, whole grains, and only eating meat/fish once per day). In addition, have been exercising regularly too. This definitely all helps, because I would have felt completely miserable if my general health was also bad.
But seems like when it's a damaged nerve, then diet, exercise, and massage/accupressure can only do so much. The nerve is always firing and basically an electric circuit that is always on. The method that was worked in my case is to find a way to shut off that circuit.
And glad you found a low inflammatory diet helped you:)
I just wonder if there is a drug which can reduce nerve sensitivity, although I guess this is a well explored topic for you.
I have not continued the carbamazepine. In both cases, I used it for about a couple of weeks, and then stopped using to test if there would be a flare-up (and there was none).
I have an enzyme deficiency called Partial PNP Deficiency which slows the speed I can metabolized these low level purines. When I eat these food I have full body pain as well as mood issues.
They add these to nearly every processed food in forms as innocuously sounding as "malted barely extract".
I used to need drugs, now I just need to watch what I eat (and watch other things in my environment like stress).
[1] https://en.wikipedia.org/wiki/Guanosine_monophosphate [2] https://en.wikipedia.org/wiki/Disodium_inosinate