EDS? Could it really be??

Almost 20 years and I think I finally solved the mystery of me. My life, health issues, falling apart so young. Why joining the military screwed me up physically and I’ve never been the same. I never bothered to researched genetic diseases. As far as I knew, my parents and grandparents were healthy mobile individuals with very little in the way of health issues so it couldn’t be that…..

Then my Rheumatologist told me I was hypermobile. I figured as much since my knees always felt like they would ‘fall off’ which is the only way I could describe the feeling. They feel loose and God forbid anyone touch my knees. They can be painful and even touch can flare them up. No pressure on them even with clothing having to be loose enough and never a knee brace that covers the patella.

I thought it was normal to wash my own back. I thought it was cool that I could push my thumb over and squeeze my hands out of handcuffs. Neat trick. Or move them from behind my back to in front. I thought it was sneaky cool. I could do the side splits and I was very very flexible. And then my pain management doctor told me he’d never seen someone in as many odd positions as he’s seen me in. To me I was just trying to be comfortable. Normal is not comfortable to me. Criss cross apple sauce or other pretzel like positions…

Then my new physical therapist came to my home and asked me straight out if I had Ehlers-danlos… Hmmm. I’d read about it though never intently, I only knew they were hypermobile…. So I researched it via Dr. Google and my jaw dropped my heart pounded and a light bulb went on. Everything from my hypermobility to hernia’s, prolapses, and POT syndrome… It fit. Wow did it fit.

I’ve since asked some relatives about it and no one had even heard about it but we did have a few family members die suddenly of an aneurysm… yikes. Blood clotting issues run in my family as well. Off to the geneticist for official testing! Prayers it’s not vEDS or that I ever have to deal with an aneurysm. My horrific headaches and migraines and chest pains are enough to make me worry about by themselves without throwing the new information into mix. I have enough anxiety as it is… What’s a little more.