Thursday, May 27, 2010

Dysautonomia ??

We all know living with EDS is never simple and I think for me, it just got more complicated.

My typical symptoms that go along with EDS have been crazy since I subluxed my neck three weeks ago.I originally wanted to get blood work done to see if there was anything of concern. I was talking to another bendy friend of mine who suggested that it sounds like Dysautonomia, esp. after the neck sublux. I went to the GP where she didn't know what to think, other than to see if I could get genetic testing done for it. I don't meet any of the 5 criteria (being of a certain ethnic minority, no papillae on the tongue, no tears when crying and two others that I don't remember). Apparently my insanely high pain tolerance has nothing to do with my symptoms.

Interestingly enough, I did my own research and found that dysautonomia is very common with EDS and that I show almost every sign of it.
  • - Increased heart arrhythmia's when at rest or laying down
  • - Increased feelings of dizziness, seeing stars and almost passing out while at rest
  • - Increased trouble regulating body temperature
  • - Insane reflux, even with just water
  • - Depression is a big problem, more than the "EDS is ruining my life" that it was before
  • - Sleep is a mess, I either have insomnia or can't get enough sleep
  • - Increased trouble breathing and chest pains that I usually don't get

I've been taking all of my supplements as I should be, eating what I should be and not doing anything stupid or careless.

And there's always the most amazing source of info on the Facebook EDS discussion boards.

I also have a bunch of my other doctors looking to it, hopefully we'll have some kind of answer soon.

So...........I have no idea what to think, or where to start.
Any suggestions?

" Living is easy with eyes closed misunderstanding all you see..."

(John Lennon)

1 comment:

  1. suggestion . .