Hi! I am new here. I have had problems my whole life related to possible EDS. Could never do the monkey bars, a single push-up, or a pull-up. Stretching without tucking my chin has resulted in excruciating pain for weeks as a vertebrae scraped along another one. I have contractures in my right hip and both knees. It is difficult for me to sit upright as I collapse down and my left shoulder wants to be forward and down, which causes severe neck pain. Many of my vertebrae are twisted 45 degrees to one side or the other as muscle contractures have pulled them out of place and I don’t have the muscle mass to correct my posture. I am concerned as I have felt myself deteriorating. After my initial research, I thought myopathic EDS is what makes sense for me. But I put my 23andMe data into sequencing.com and have several markers for vascular EDS, though the data isn’t complete enough to confirm it. I ordered the whole sequencing, but it could take a few months to come back with an answer. I don’t have health insurance to seek help. A functional medicine doctor was going to refer me to a specialist, but she said she won’t do it until I have insurance. That seems like a lofty goal. I thought I didn’t have VEDS because I don’t have the stereotypical nose and thought I don’t have translucent skin, but when I looked at videos and pictures I was very surprised at what is considered to be translucent skin. Yes I can see veins most everywhere on my body, but not on my back or my belly. I also have always bruised easily and right now have three bruises that I have no idea how I got. When I was pregnant with my third child, my left hip (the one that is not contractured) would come out of socket every time I lied down, so I tried to sleep sitting up. After he was born they kept me in labor and delivery for two days due to irregular heartbeat and too much bleeding, but I didn’t end up needing emergency intervention. My hands have also always looked old. I am 39 and I think they look at least 60. So maybe I do have VEDS even though I have a large nose, I don’t know. I will be glad to get answers, but in the meantime my emotions are all over the place, especially since my oldest son also has characteristics and my daughter’s symptoms are more severe than mine.
Posted by Deleted (95546c35) at 2023-03-06 06:23:25 UTC