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Living with Elhers Danlos Syndrome: Seeking Advice and Support

Cassiopeiaa

746d

What's your experience with Elhers Danlos syndrome, and what treatments work for you? Hi! I'm Pea, I was recently diagnosed with ASD, then not too long after EDS. I'm looking for new people to talk to that can relate. I've lived with chronic pain my whole life, but it's only gotten worse as I've gotten older. I'm hopeful physical therapy will help, but am always open to knew ideas.

2

5

5

Chronic Generalized pain

Atrial Septal Defect (ASD)

Ehlers-Danlos Syndrome (EDS)

Chronic Pain

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Top reply
    • Blair_Waldorf

      746d

      hey Pea! first of all i’m sorry i know diagnoses can be a lot to take in and process but it’s good you have a name for it so you can get care for it 💕 i honestly still struggle with a lot of chronic pain but i do pt every week to strengthen the muscles around my joints which has really decreased my dislocations. also staying slightly but not overly active helps my EDS and other conditions. I take some meds for muscle spasms and even just taking magnesium malate can help a bit. i am getting in with a pain management specialist so i can let you know if that’s helpful! i’d love to continue chatting about both of our journeys and experiences! do you deal with pain everywhere and are dislocations a big issue?

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    • AudaCity

      746d

      I have an interventional pain management doctor and am considering returning to physical therapy again soon. I manage with a lot of splints and braces

      1

      Reply
    • Allie8

      746d

      Hello! I’ve found that physical therapy has been helpful with managing my symptoms. I’ve also worked with a psychologist that specializes in pain and have found that to be helpful in coping with living with chronic pain. I hope you are able to find treatments that work well for you!

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      Reply
      • Cassiopeiaa

        746d

        @Allie8 Thank you so much! I'm hoping physical therapy will help. And I'll talk to my doctor about seeing a psychologist that specializes in pain. I think it would really help.

        1

        Reply
    • Blair_Waldorf

      746d

      hey Pea! first of all i’m sorry i know diagnoses can be a lot to take in and process but it’s good you have a name for it so you can get care for it 💕 i honestly still struggle with a lot of chronic pain but i do pt every week to strengthen the muscles around my joints which has really decreased my dislocations. also staying slightly but not overly active helps my EDS and other conditions. I take some meds for muscle spasms and even just taking magnesium malate can help a bit. i am getting in with a pain management specialist so i can let you know if that’s helpful! i’d love to continue chatting about both of our journeys and experiences! do you deal with pain everywhere and are dislocations a big issue?

      2

      Reply
    • Blinky

      746d

      Got diagnosed with EDS very recently and I don't know either. Commenting to see what other people say. 😅

      1

      Reply

☝ 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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