unfortunately I’d seek out a rheumatologist or an ehlers specialist :( i have yet to meet a primary care doc that takes it seriously or even knows what it is, sadly.

Same here, I had to go for some nerve pain in my hands and feet that allowed me to get a rheumatologist appointment. I am going to be getting tested for Eds soon!

depending on where u live and how old u r, it can definitely be hard. i just moved to a new area (Augusta, GA area) and got EXTREMELY lucky that i was still 17 when we moved, so i could see a pediatrician. AU University in Augusta has been overall pretty amazing. i hope u find someone who will help u and take ur concerns seriously. one thing i will do tho if they won’t take u seriously, is ask them to note if they refuse to do scans and such in ur chart, so it’ll reflect badly on them.

it’s really hard to find good physicians that believe and know about eds or even are just willing to learn and research it. Luckily, my doctor has eds, and knows exactly what i’m going through.