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After some recent events and lots of research, I’ve wondered if I could have EDS. I had a few questions. If anyone could please give me some insight, I’d really appreciate it. Here’s some background:
Growing up, I’ve always had frequent dislocations (in my shoulders, hips, knees, and ankles) and dysautonomia issues. They were annoying, but I managed without too much discomfort. In 5th grade I was diagnosed with arthritis. Had to change my lifestyle to accommodate, but again, manageable. Last year I was diagnosed with gastroparesis and it went all downhill from there. I became extremely malnourished and underweight since there wasn’t much doctors could do. As a result, I joined a gastroparesis support group in hopes of finding help. This is where I first came across EDS. After posting my story, I started exchanging messages with a woman who shared a lot of my symptoms (arthritis, gastroparesis, joint dislocations, and dysautonomia) She was recently diagnosed with EDS and was told they are all those problems are related and suggested I get checked out for it. After being diagnosed with gastroparesis not only has my dysautonomia gotten worse, but when my joints dislocate now, I’m in pain for days after. It never hurt before. I feel like these issues are getting progressively worse. At 19, I’m finding it very debilitating and had to drop out of college as a result. It’s taking over my life.
My questions to anyone suffering: Does this sound like it could be EDS? Do all your joints have to be hypermobile in order to be diagnosed with EDS?(because I only have it in some) My rheumatologist hasn’t ever brought it up but from I’ve read, I know it often goes undiagnosed so I’m very curious.
Hi Breanna, Have you checked your joints with the Beighton Scale (google)? Until we have a better system in place, that is a decent way to get an idea of hypermobility. In borderline cases, it is helpful to also examine family members and ask more questions (can you touch your foot to your forehead, for example). It *sounds like* it is a definite possibility!
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