Learn from patients with pain similar to yours

CatchMyPain Community and Pain Diary App to manage chronic illness

so many diagnoses, so little answers.

Nov 09, 2014 2:21 PM

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.

Nov 09, 2014 6:03 PM

hey there- where do you live? it is so frustrating when you have so much pain and they don't know why! hang in there!

Nov 09, 2014 8:47 PM

Thanks so much, jess! I live in the southeastern USA. I appreciate the encouragement.

Nov 10, 2014 1:11 AM

this is CRPS and they seem not to have a cure only able to control symptoms with drugs etc so have less bad days but I seem to have more bad than good

Nov 10, 2014 6:13 AM

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.

Ready to start relieving your pain?

Join Community