What is Ehlers-Danlos Syndrome
Ehlers-Danlos syndrome is a group of rare genetic disorders caused by a defect in collagen synthesis. Depending on the individual mutation, the severity of the disease can vary fro...
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Hi Everyone
I just joined :) I've always been flexible my entire life, and didn't really think much of it. For the past four years I get left shoulder pain which I attributed to my neurolgocal genetic disorder which causes tumors to grow on nerve tissue. Anyway, after scans ect nothing has been found that can contribute to the pain and recently I realized, every time my shoulder hurts I noticed the joint itself seemed loose, to the point I could wiggle my humerus around. The joint also feels 'crunchy' and makes noises that I can hear... I thought I might have injured my rotator cuff, but doubt that's the case since the pain and the symptoms aren't always there. I've also had doctors note how soft my skin is. Though I know it's really not the greatest idea to self-diagnose, I think ED type III is a possible explanation of my shoulder issue and my hypermobile joints. I can touch both thumbs to my wrist, all my fingers bend back 90+ degrees, the skin on the back of my hand is stretchy and there's a small lag of the skin bouncing back, my elbows and knees hyper-extend, can touch palm flat to the floor w/o bending at knees and I can place both of my hands on a flat surface and rotate them a full 360 degrees with palms never loosing contact w/ the surface. Honestly I'd leave it be and go on my marry way but my shoulder pain is troublesome and affects my work performance. I'm an artist so it's annoying to say the least for either of my arms to be performing at less than perfect. I'm pretty sure my needing to 'pop back' my left thumb occationally is due to the joint sublaxing. How likely from your experiences that I have ED? and if I want to pursue a diagnosis how would I go about doing so? A problem I foresee is that whenever I have a 'new symptom' (rather, when I decide to mention an existing chronic symptom that reached a point I feel warrented attention) is that my doctors automatically think it's due to my genetic disorder and than drop the issue when no reason can be found. Sorry this is gotten so long, but I don't think I should let the shoulder thing go on too much longer... Posted on 12/11/08, 09:12 pm |
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Weel , Im no specialist but it sounds like you may have EDS3. why not book an appointment with a specialist for clarity. 
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