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groundbeef

274d

I was just diagnosed with heds while I was at an appointment for my pots. The doctor didn't really explain much about it so I was wondering what I should be doing to manage it? thanks!

Top reply
    • Alyss

      274d

      Ehhh, so increasing salt and compression stockings will help with the pots. HEDS is mostly observed when you're in pain. If so, ask for physical therapy and find one who is experienced in hypermobile disorders. Ask your pots doctor if you should get a heart ultrasound to make sure your heart looks and works okay, and be careful of chronic constipation as it can lead to an issue with the colon and the space where if you're afab, you have a uterus. I think it can be a problem with amabs, too, though, since there's still that space. I didn't fully understand, but I know it's a thing.

    • dolphinblues

      273d

      I agree with going to a PT who knows how to treat hEDS. It makes a huge difference in the way they work with you. Look into The Muldowny Protocol, I highly suggest buying the book. The Ehlers-danlos website is a great place to start, too. My granddaughter has hyper-mobility, and her PT and OT use the Muldowny Protocol with her. She has made more progress with it than anything else.

    • Alfubet

      274d

      Start by going to the Ehlers-Danlos official website and learning more about hEDS. You’ll need to be well versed in order to be able to advocate for yourself because most doctors are clueless about EDS. The EDS website has a registry of recommended Drs and physical therapists, you could check if there are any local to you. I’ll second the physical therapy. You want to make sure your muscles can make up for the slack of your ligaments in holding your joints together. I have a collection of various braces and compression sleeves/socks in case some joints need a little extra support. Find a support group on Facebook or Instagram, they’ll be able to help answer questions you have as well.

    • Alyss

      274d

      Ehhh, so increasing salt and compression stockings will help with the pots. HEDS is mostly observed when you're in pain. If so, ask for physical therapy and find one who is experienced in hypermobile disorders. Ask your pots doctor if you should get a heart ultrasound to make sure your heart looks and works okay, and be careful of chronic constipation as it can lead to an issue with the colon and the space where if you're afab, you have a uterus. I think it can be a problem with amabs, too, though, since there's still that space. I didn't fully understand, but I know it's a thing.

☝ 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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The context does not provide specific information on how to manage hEDS (Hypermobile Ehlers-Danlos Syndrome) after diagnosis.

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