I tried everything out there, and I haven't found any relief, which is bummer. Of everything I have tried, MJ (edible) is the best but I don't live where it is available. Narcotics do work, but, you find yourself on a merry go round where you have to either escalate the dose to get relief or else wean off for periods of time and start the circus all over again. It's a constant battle with interdose withdrawal as well.

Our cases are similar, for me, now that all the crazy neuro stuff has subsided, it almost seems as if the fascia which has now been found to be highly innervated by small nerve fibers, is what is causing so much body wide pain. I feel like my fascia is too small for my body, very tight, very stiff, and very painful. I am trying to do stretching and if I could afford it I would have massage frequently. Other than that, it's oxycodone, as little as possible, which some days can be none, and an extreme change of lifestyle for me, which really worries me, as I have lost a lot of independence. Also IVIG was of little help for me. :/ I would love to try plasmapheresis but that isn't likely to happen.

I am just thankful that the very severe headaches are far less frequent now. Whatever I have, it is nasty and the treatments were nasty as well.