Dealing with Joint Pain: Seeking Advice and Support

Hi y’all, I’m new here. For a bit of quick background, I’ve dealt with joint pain since I was a preteen, and it’s been getting progressively worse. I’m now 24 and the pain is becoming unmanageable. I’m hypermobile, and I also have the stretchy soft skin commonly associated with connective tissue disorders. I’m currently going through the really tough process of being evaluated for EDS. There’s about one specialist in my area and he’s only taking pediatric patients right now. I don’t know for certain if EDS is what I have, but my primary care doc agrees that it’s a STRONG possibility (he himself doesn’t have the knowledge/qualifications to diagnose). I wanted to hear about other peoples’ experiences getting diagnoses for similar disorders. Was it a hard process? How did you find a doctor who could help you? Advice is always helpful but I also want to just feel less alone.

Your answer

feellicks

2y ago

we can go thru this together !!

feellicks

2y ago

no way I'm going thru the same thing

wise

2y ago

You must live near me lol. There's one guy within 100 miles of me and he primarily takes pediatrics. I've been on the wait-list for, no joke, more than three years. I've had the same experience with joint pain too, although mine started when I was around 5 years old, just like my mother. I have the general EDS dx, but an appointment with a geneticist is not in the cards right now. My GP is incredibly grateful that I've done hours and hours and hours of research and she won't question my diagnosis, but she's working with me to figure out how she can beat approach EDS patients and which specialists to send them to. Ask your GP for a referral to orthopedics and to rheumatology, those are the people who are gonna be able to treat your symptoms and maybe give you an unspecified EDS dx for insurance purposes. I'm always up for talking about my experiences and answering questions if you want to DM me about it!

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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