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Leaf98

Updated 1y ago

Questions about Ehlers-Danlos Syndrome Symptoms

howdy! so I just had some questions trying to see if EDS is concurrent with my symptoms I have these moments I call my bones to be dislocated although I don't think it's a full dislocation. my hip does it the most if it's "dislocated" I can't put alot of preasure on it to the point I have accidentally fallen a few times with very sharp pains and until I can get it to make a pop noise it still hurts like crazy. my hips wrists fingers shoulders jaw and ankles are the most affected by this! any advice is apreciated!appreciated!! I hope you have a wonderful day!

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LeeannD

2y

I get this a lot. Like you, in my hips the most. I believe you're describing a subluxation. Honestly having a good PT has been life changing. I only need to see her every few months now but she really helped. She also introduced me to small microcurrent therapy which has also been life changing
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Leaf98

2y

I'll have to check that out and mention it to my doctor!! Thank you so much!!!!
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Zebra_Warrior

2y

I agree, definitely subluxations ❤️ and PT is best! It’s definitely my home away from home 😆 They should be focusing on strengthening around the problem areas and not stretching/range of motion. Definitely ask when you call a place if you can be paired up with anyone knowledgeable on EDS or at minimum hyper mobility. They should never push you too hard/understand you’ll have days with ups and downs ♥️ 🤗 Also I’d def recommend getting a custom night guard from your dentist. My state insurance covered it. I have TMJ and I can say my jaw pain is almost gone by wearing this while I sleep every night. I was very impressed 🤪♥️
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Shannon96

2y

Sounds a lot like EDS could be what they call sublaxs
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OTgirl1213

2y

Most likely you are having subluxations which are partial dislocations. Very common with EDS. Keeping your muscles strong and watching your positioning to avoid too much stress on the joint are the best thing you can do. The ligaments don’t do trot job well, so strong muscle helps. Physical or occupational therapy can be helpful. I’m an OT, and we can teach joint preservation techniques, ergonomics, positioning, and strengthening
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Leaf98

2y

Haha I'll have to work om my grip strength then my fingers have been dislocating alot perks of manual wheelchair use 😅

The content in this post is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.

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