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.
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