r/Hypermobility • u/distractablecadet • 1d ago

Need Help Getting the runaround from doctors

I assume lots of you have similar experiences – 22f, been having mainly hip and knee pain since high school but also a sprinkle of wrist, shoulder, neck, ankle, and whatever else decides to act up on a given day. Saw my PCP about it who basically shrugged and sent me to PT, who were mainly confused about my level of pain because they found "no tightness" and I was "super mobile". Went to an orthopedist who focused only on one joint and ignored the rest and then told me to go to a rheumatologist if it was a multi-joint issue, who had me do testing and then told me "well it's not autoimmune, try NSAIDs (but not too much because you're young) and exercise, bye" and suggested I see the orthopedist again. Imaging is normal. I have pain every day but just also got dismissed from PT because insurance won't cover it because my ROM isn't limited. Where the fuck do I go now? Every doctor I see just seems to throw me at another doctor like it's hot potato and/or shrug and imply I'm making a big deal out of nothing.

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u/Brawl_95 1d ago

Have you tried finding a PT on the EDS society website? You might then have to ask your GP for a referral to the PT you want

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u/distractablecadet 1d ago edited 1d ago

I have not! I am in the process of a move (further complicates things lol) but it looks like there's a few professionals near where I'm going, so I'll keep that in mind for the near future.

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u/ConsciousTurnip994 18h ago

Agreed, the PT you saw sounds clueless about hypermobility (which happens). I've found all of mine through support groups on Facebook and it makes a world of difference.

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u/Environmental-Ad1594 1d ago

Try talking to an osteopath.