Join a Community That Understands You

Get answers from those who share your health journey

Left Image 1Middle Image 1Right Image 1
avatar

Anxiousboarderline

Updated 1y ago

Should I Talk to My Doctor About EDS?

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

Can you help? Connect today

avatar

BoomerangValentine

2y

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
avatar

AndSheWas

2y

I would absolutely recommend talking to a doctor - those were exactly my symptoms before I was diagnosed
avatar

Anxiousboarderline

2y

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
avatar

Old.Greg

2y

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.
avatar

Ornith

2y

Definitely sounds like hypermobile EDS!

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.

feed-footer-0

Free unlimited access

to all community content

feed-footer-1

Find others who are

medically similar to you

feed-footer-2

Pose questions and join

meaningful discussions

pp-logo

Alike is a transformative platform that goes beyond just bringing together patients; it meticulously connects individuals based on multiple critical factors, such as age, gender, comorbidities, medications, diet, and more, fostering a community of knowledge, support and empathy.

appStoreBtngooglePlayBtn

© 2020-2024 Alike, Inc