Exploring Ehlers-Danlos Syndrome Symptoms and Diagnosis

Go to the EDS website, and print out diagnostic sheet and fill it out.

I am hyper mobile and have classical eds; I have a lot of joint pains and I dislocate AT LEAST 2 things a day. That’s the main thing for me is dislocations and joint pain. I used to be able to be really flexible but it hurts to do it now. When they tested me they did the scale test ( I forgot the actual name) and then blood test.

For starters there are 13 different types and I was diagnosed with hypermobile type. My symptoms may be different than yours, but I want you to know I'm not here to say whether or not EDS is a possibility. Symptoms will present differently in everyone. Honestly my diagnosis journey was exhausting. Long story short my symptoms progressed from mild ankle pain to wrist pain to knee pain to everything else pain. I thought it was getting worse from being an athlete for 15 years so I quit. I was misdiagnosed by 11 doctors over the course of 8 years and was treated separately for each my joint pain, asthma, allergies, seizures, and cardiac issues until a geneticist finally diagnosed me when I was 18. Since hypermobile EDS doesn't have a genetic link we're still not 100% sure that's what's happening, but it's the diagnosis the doctor was most comfortable with. Just remember that the process of getting diagnosed is awful, but you need to advocate for yourself. A lot of doctors I see STILL don't know about EDS. Ask questions and don't let them brush your symptoms off.