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658d
Hi so I don’t have an EDS diagnosis but my mom has EDS (on palliative care Bc of it) and my younger sister also has “hyper mobility” not sure if it’s EDS yet. I keep seeing videos on tiktok of peoples “things I didn’t know were EDS until I got diagnosed” and a lot of them relate to me. Can anyone tell me if I should talk to my doctor about it or am I just anxious?? Some things Iv noticed are hyper mobility (mainly my hands, hyper extended knees and far elbow rotation) I can dislocate my hip on command but it pops right back in Stomach problems Ankle and hip pain if I walk or stand for too long (interferes with my friends and boyfriend because I get in so much pain if I’m too active) Bruising Clumsy Constant fatigue High resting heart rate Ringing ears
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Ehlers-Danlos Syndrome (EDS)
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650d
Definitely sounds like hypermobile EDS!
657d
Since EDS is genetic I would really look into it. My mom wasn't diagnosed until she was 22 and I wasn't diagnosed until just a few years ago. Gastrointestinal issues, hearing issues, and equilibrium issues are all of course symptoms of EDS. My mom and I have the hyper mobile type, and I can dislocate/sublux a number of my own joints on command.
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I would absolutely recommend talking to a doctor - those were exactly my symptoms before I was diagnosed
@AndSheWas it scares me so much because of my mom. Like if I do have it I want to get diagnosed so I can take proper steps and everything but also I don’t want to face the reality of actually having it. My mom has been so sick almost my entire life and I have medical trauma from it so Her reality becoming my reality is terrifying
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@Anxiousboarderline yeah that’s absolutely terrifying, but I have found that with medical trauma stuff, knowledge is often power. Knowing what steps to take and what to expect can make a huge difference. Also, remember that each person experiences EDS to different degrees, even within the same family. I got it from my mom, and she barely has any symptoms while I have lots
I would definitely recommend talking to your doctor :) I wish I had said something to mine sooner to have gotten ahead of my symptoms before they got really bad
☝ 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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