Hi, my name is Steve, I'm 29 years old, live in Illinois, and was diagnosed with EDS-Hypermobility through the doctors observations. I do have symptoms of the classical type, mainly the skin involvement, as it does tear fairly easily and has quite a bit of elasticity to it.
My diagnosis is fairly new, and it was only within the last 7 or 8 years where my symptoms started to show. In fact, I had absolutely no problems with my joints, my skin, pain, or other complications during my childhood(edited in). All I know of was that I was extremely flexible, certain joints did have partial dislocations(with no pain), and I considered that I was normal, because everyone else didn't seem to think otherwise.
Now here I sit in the last few years, and it seems my life is snowballing downhill with medical complications, pain, pain, and more pain. I have torn labrums in both shoulders and both hips. I have a constantly partially dislocated wrist. I now deal with chronic pain due to joint dislocations and subluxations. I've had two ankle surgeries, one with complication on wound healing. I constantly get impact injuries such as stress fractures if I try to run(in fact, I've had stress fractures spiraling down from shins, up into my femurs-luckily the doctors caught it before they got into my hips). Constant nerve impairment in my elbows and wrists(my ulnar nerve has subluxation problems at the elbow). I do have intolerance to heat and cold, as well as some digestive problems(although not entirely sure if it's related to EDS). I'm sure there are other minor problems as well that I didn't list, but these are pretty much ones that destroy the quality of life I once had.
Now the most recent problems is experience dizziness, near fainting, rapid heart rate and pre hypertension. However, these symptoms come and go, nothing really triggers this problem. I've had a table tilt test done, however, it showed nothing. Ultra sounds on my heart, only show minor tricupsid regurgitation, so in general my heart is healthy. Is there any ideas on what can be causing this, especially since tests keep coming back normal?
Has anyone experienced going to the Mayoclinic for treatment? My cardiologist and PCP, both are trying to set up my appointments to see a battery of doctors there. I'm eager for this, but at the same time, my insurance may hold me back from going.
Stay safe and thank you for reading my wall of text,
Edited August 16, 2012 at 7:59 pm