I feel you, I went through the same thing with providers, but don’t give up. There are providers that will listen and will believe you. You just need to tell them what you have tried and who you have seen and done.
Have you tried epsom salt baths for your muscle pains?
I would try too see a specialist in Neurology? I know they are not the best to work with but if u find the right MD. Which state do you live in? I know dr. Manousaukis is good at the University of Minnesota.