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MelodyElaine

2y ago

Looking for Diagnosis and Treatment for Hypermobility Ehlers Danlos Syndrome

Hi! I just recently discovered Hypermobility Ehlers Danlos Syndrome and I fit the criteria. Two doctors have told me I fit as well but can't diagnose me and don't know who can. Any ideas? If I am diagnosed, are there any treatments? Ideas for exercise or managing the pain and injuries?

Your answer

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History.and.cats

2y ago

Geneticists and rheumatologists can. Treatments (from what I'm aware of at this point) is mainly pain medication and physical therapy. My ankles are the joints that get injured the most and I love hinged braces. They make it so that you don't lose muscle in the joint but they support you and let you move. For pain outside of meds I go for CBD and D8THC. I've heard that capsaicin creams can help as well as micro dosing on shrooms but I haven't tried them. I start specialized PT next week if you want any of the exercises just let me know.
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dearestdoe

2y ago

seconding wise, geneticist was the same thing i was told! if you have issues with dislocations or otherwise unstable joints, braces have been a HUGE help for me. my hands are a particular problem area, so if you have issues with those i can definitely recommend Zebra Splints, they just keep your fingers from hyperextending back too far. if you have trouble with standing or walking for too long, dont be ashamed to get a mobility aid like crutches or a wheelchair to prevent injury in the first place. as for exercise, i havent been thru any physical therapy myself, but definitely dont overdo it. gentle exercises, yoga might be good if youre careful
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goblin49

2y ago

omg I've never heard of anyone else using Zebra splints, but I literally love mine and very much second that lol. Also, kinesio tape helps a lot with my joints when I need something a little more in between!
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wise

2y ago

A geneticist! An orthopedist may also be able to give the diagnosis, at least for insurance purposes

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