Anyone else fall into the "rare and complicated" group? Finally being sent to a big research institution to get all this sorted out. Its been about ten years coming but hope is finally on the horizon. We don't know exactly what I have yet but we are fairly certain there's a form of Dysautonomia and a neuromuscular disorder at play. I also have classical EDS, more tissue/skin fragility than joint complications. It makes things more complicated but we aren't convinced that all my symptoms are from that.
Yup rare and I'll quote my doc for you "The most complex thing I've ever seen", they don't know what i have, refuse to do any tests and i have no money to pay for them myself and refuse to help me we my pain anymore, they ate no longer trying anymore medications or anything.