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Eds And Dysautonomia


EDS and Dysautonomia  

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This is a repeat of a poll I did on NDRF, but not many folks there have EDS which is why I'm repeating myself. I would appreciate people filling this is and any comments you might like to make. One of the things that have been said to me by drs was that I couldn't have dysautonomia secondary to EDS if I had EDS I'd have had dysautonomia symptoms since birth too. So I was wondering what others experience of both was.

Many thanks!


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I voted that I developed autonomic issues later in life, but that doesn't mean I wasn't born with it, it just means that is when my symptoms became noticable enough to be disturbing. I noticed things when I was younger, but they wern't necessarily disabling at the time.

I heard POTS can be scondary to EDS----especially if there is vascular involvement.

Maxine :0)

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I haven't been diagnosed with EDS but I suspect that I may have the hypermobile type and am waiting to see a specialist for his opinion.

As a child I often had "growing pains" in my knees ankles and wrists. I could also dislocate both shoulders very easily if I moved my arms the wrong way. I didn't start to really suffer with POTS until I was 25 when I caught a viral infection and started fainting frequently. However looking back I certainly had mild POTS prior to that (pulse when standing still in queues was 120/min even 3 years earlier) but we're not sure if the mild POTS followed an earlier viral infection - sort of a double hit to get the disabling POTS that I have now??


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Well, I answered later in life, but one has to wonder.

I have not been diagnosed with EDS and my story is similar to Flop's. I had terrible growing pains, I could contort my body into all sorts of positions - head between my feet was my favorirte "freak-out" pose!!! Some of my joints would dislocate spontaneously at times. My joints ache now - knees, hips, mainly legs. I don't know . . . .

I seem to have developed POTS or at least gotten to the point that POTS became an issue in my daily life at age 40. This was post-hysterectomy, and post a major viral infection that put me in the hospital for a couple of days for fluids and meds. It was awlful! A few months after that, I'm fainting and POTS-ing around.

I have always become weak waiting in lines. I have always felt dizzy and as if I were wilting at times. I would usually self-medicate with food. It seemed to help, but what I know now is that the sitting to eat did more than the food! Squatting is and always has been a favorite posture of mine. My family marvels that I can still, at 41, squat like an Aasian woman in the rice paddy!. What can I say this too may be further evidence of EDS.

. . . hard to say . . .

Dari <_<

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