Pots And EDSHey guys, I've been reading through the stories and figured it was time to share my own. It seems like most of you are idiopathic, but does anyone else have pots as a secondary illness? Namely ehlers danlos syndrome and the various Mitochondrial diseases are what I'm interested in.
I developed pots my doctors believe as a result of eds or Hypermobility syndrome because I'm too stretchy on the inside and the De conditioning that comes with the injuries. My doctors say that there is really nothing they can do but control symptoms as it is progressive and pots associated with another illness is usually pretty hopeless. My quality of life is suffering because they have pretty much given up on finding new treatments and the ones I tried either stopped working or never started. Even the positive effects of iv fluids wear off after about a day and I can't be going to an er or infusion center on the daily.
I guess it's time to find new doctors but we all know how much of a fight that is. So i guess in the meantime I am wondering if any of you are in a similar situation and if you've found anything that helps at least give you the semblance of a normal life.
deleted 26-30 2 Responses 0 Feb 9, 2013