Looking for Diagnosis and Treatment for Hypermobility Ehlers Danlos Syndrome

MelodyElaine

696d

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?

Generalized pain

Hypermobility Syndromes

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History.and.cats

671d

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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History.and.cats

671d

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

696d

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
  
  683d
  
  @dearestdoe 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

696d

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

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Looking for Diagnosis and Treatment for Hypermobility Ehlers Danlos Syndrome

MelodyElaine

Top reply

History.and.cats

History.and.cats

dearestdoe

goblin49

wise

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Looking for Diagnosis and Treatment for Hypermobility Ehlers Danlos Syndrome

MelodyElaine

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History.and.cats

History.and.cats

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goblin49

wise

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