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BreadnBeans

Recently updated

Seeking Advice on Hypermobility Disorder Diagnosis

I'm planning on making a appointment with my PCP to talk about possibly having a hypermoblity disorder (me and most my family are hypermoblity and have joint pain [+some other things that from my search could be caused by one]). I'm not really sure how to go about this though? She knows I've had chronic pain for years but I never have brought up anything to do with hypermoblity before and the only testing she has done before is for a type of arthritis (negative). Any suggestions on how to go about this?

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AlaskanZebra

1w

Have you looked up Beighten test before? That’s something that they usually do.
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bunbunii

6d

Most PCPs will not diagnose this, unfortunately. You will probably need to go to a specialist. Doesn’t hurt to bring it up, but I don’t expect my PCPs to completely understand or even know how to manage EDS or hypermobility. My PCP mostly handles my POTS diagnosis although I’ve also been diagnosed with EDS. It’s unfortunate not many doctors know how to treat it or will even diagnose it, there’s a whole medical stigma against EDS especially hEDs .. I would encourage you to look into it a bit more especially talking to people who have it now. It takes people 4-5 + years to get diagnosed with hEDS after having issues simply because the lack of doctors with medical knowledge of the condition.
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Kesart26

3d

Hi there - my former rheumatologist did the Beighton test on me and gave me the diagnosis that day, I'd recommend finding a rheumy near you 🙏

The content in this post is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.

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