Tuesday, October 19, 2010

Because I'm awesome..

Because I'm awesome, I somehow managed last year to create a new blog address which has become my current blog with updates from 1-3 times each week depending on what life with EDS hands me. So, if you're interested check it out here


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)