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Coffee_bean

395d

I've been waiting all week to try bring up my hEDS suspicions to my dr and so got on this phone call to him and we were discussing some blood test results I've had recently and he said at the beginning of the call that we would also get onto my join pain ect. Just after he told me I was like nearly off the chart low in vitamin D the phone call cut. He didnt call back but I somehow recieved a voice mail telling me we basically covered anything and I would be prescribed meds for the vitamins. he suspects my joint pain is due to the deficiency. I'm so frustrated because my knee is litterally popping out sideways when I walk sometimes and I know I'm hyper mobile too. am I overreacting to this? could it all be vitamin D?

    • Officialishness

      395d

      It’s possible deficient vitamins along with general hypermobility could play a role I believe in the pain and discomfort. hEDS has really rigid diagnostic criteria so unfortunately it’s difficult to get diagnosed without seeing a specialist. I would try the vitamins along with some basic prevention, such as wearing daily knee braces, and see if that helps - if not then i recommend talking to your doctor to get a referral to a geneticist (usually diagnoses EDS.) ultimately, listen to your body, if it doesn’t get better then push for a diagnosis. EDS isn’t the only possible diagnosis, nor is vitamin deficiency, so it’s important to work with your doctor to get to the bottom of the issue and manage it. I hope you’re able to find answers soon 🙏

      • Coffee_bean

        395d

        @Officialishness I'm currently seeing a PoTS specialist who said he thought I may suffer from it which is why I'm suspecting that. I kept it brief in this post but it's far more than sore joints. just bummed out at not getting a chance 🤷‍♀️

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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