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Hello! I started to suspect I had Ehler’s Danlos Syndrome several months ago when I would feel extremely light headed upon standing, I fainted twice and eventually went to the emergency room. The doctor that saw me in the emergency room took my pulse laying, sitting, and standing and asked me if I had ever heard of POTS, I started researching about it and came across Ehler’s Danlos Syndrome. I honestly never knew that I had been exhibiting signs of it my entire life. I realized just how not normal I was. Ever since I could remember I’ve had joint pain. I thought it was normal for your knees to ache every night, it’s been going on since before I can remember. I thought it was normal for my fingers to ache after holding a pencil for 10 minutes, after drawing, texting, typing, everything. I thought being able to bend in weird ways was just a cool trick I could do. I’ve also always had intestinal issues. When I was young I thought it was normal to only have a bowel movement every few weeks, that’s how constipated I was. I though it was normal to have your stomach hurt all the time. I thought pain was literally a normal part of life. I’ve always bent my fingers in odd ways, I’m only 19 and I feel like it’s catching up to me. My fingers hurt every day as well as my elbows, neck, lower back, shoulders and almost every joint hurts occasionally. I have a high narrow palate, I bruise like a peach, and I get the worst migraines that I could imagine. Brain fog is an understatement. I stare at everything. I get so zoned out that I don’t realize someone is talking to me. I can’t think of words that I want to say, I just feel like life isn’t even real sometimes. I’m tired of feeling like this. I just want to know the reason I’m feeling like this. I don’t have health insurance so I have no idea if and when I’ll get a diagnosis. Does this sound like EDS to you? I’ll attach some pictures of my hypermobility.
Your hypermobility is undeniable. Have you seen The Beighton Scale? It looks like you may be a 9/9 — clearly hypermobile. Usually, an examination of the skin, easy bruising, possible stretchiness, striae (“stretch marks”), piezogenic papules, spongy texture of arms, etc will help cinch the diagnosis. Good work figuring out what others have missed! 😉
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