Felt That logoFelt That
Back to Community
Condition-Specific

Living with EDS — things I wish I knew sooner

kait_b
I've been living with hEDS for over 15 years now and I wanted to share some things I wish someone had told me earlier. Not to scare anyone newly diagnosed — just to give you a heads up so you're not blindsided. 1. Your joints WILL sublux at the worst possible times. I've had my shoulder slip out reaching for a coffee mug. My jaw subluxed mid-yawn once. You learn to just pop things back like its nothing which honestly horrifies everyone around you. 2. Comorbidities are the real beast. POTS, MCAS, gastroparesis — EDS rarely travels alone. If you start developing weird new symptoms, don't assume they're unrelated. 3. Finding a doctor who actually knows what EDS is shouldn't be this hard but it is. I went through 6 before someone even said the word. If your doctor says "you're just flexible" please find a new one. 4. Physical therapy is your best friend BUT it needs to be with someone who understands hypermobility. Regular PT can actually make things worse. 5. The fatigue. oh my god the fatigue. Your body is working overtime just to hold itself together. Of course you're tired. 6. Bracing and tape are not giving up. Whatever keeps your joints where they belong is valid. Happy to answer questions from anyone newly diagnosed or suspecting they have it.

5 Replies

sammy_eds

i was just diagnosed 3 months ago and this is exactly what i needed to read. the part about comorbidities especially — i JUST started getting heart palpitations and weird blood pressure stuff and i was freaking out thinking it was something new and unrelated. gonna bring up POTS at my next appointment. thank you for writing this out. seriously.

norahj

The jaw subluxing mid-yawn thing — I thought that was just me!! I've had it happen during a dental appointment and the dentist PANICKED while I just casually pushed it back and said "that happens sometimes." The look on his face was priceless. Also +1 on the PT thing. My first physical therapist made me worse because she kept pushing my flexibility. My second one understood hypermobility and focused on STABILITY instead. Complete game changer.

tapegirl

the KT tape thing is SO important. i had someone tell me i was "too reliant on tape" and needed to "strengthen my muscles instead." like yes im doing that too but also my shoulder literally falls out of place without it so maybe lets not shame the thing that keeps my skeleton assembled??? i go through like 3 rolls of KT tape a month and i have zero shame about it

ellie_v

15 years gang! I've had hEDS for about as long and everything on this list is spot on. The only thing I'd add is: learn to advocate for yourself in the ER. Because you WILL end up in the ER at some point and most ER docs have never seen EDS and will not know what to do with you. I keep a medical summary card in my wallet with my diagnoses, meds, and "things to know" (like my joints sublux easily and I have a high local anesthetic tolerance). Saved me so much time and confusion.

user_3371

^this. all of this. especially #3 about finding a knowledgeable doctor. im on doctor number 4 and still looking

Leave a Reply

Join the conversation

Just your email and 30 seconds. No hoops, no hassle, no spam.

Sign in to reply