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beaky

1y ago

Struggling with hEDS Symptoms and Lack of Diagnosis

I have multiple symptoms of hEDS (loose joints, easy bruising, slow healing etc), but also a lot that don't fit the diagnostic criteria (not all my joints are hypermobile, only my knees, ankles, elbows and wrists, my spine especially has reduced range of motion due to lumbar stenosis and scoliosis, my skin isn't stretchy,...). Because of this I therefore have no official diagnosis for whatever is wrong with my joints/causing me chronic pain which means doctors never take me seriously and just tell me to rest and take ibuprofen and I can't access any support for it. Its also making me almost gaslight myself into thinking maybe there isn't anything wrong with me and maybe I'm just being dramatic. Does anyone have any resources on where I can go from here?

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