Dealing with EDS Symptoms and Social Life

4 wheel rollator would be helpful, given the fact that it wouldn’t put stress on your shoulders like a wheelchair would!

I think doctors who discourage people with EDS from using mobility aids are 100% ablest. I use mobility aids all the time, and used a wheelchair full-time for three years. That time in a wheelchair allowed me to be independent and it allowed my body time to heal. Once I was healed enough to start walking again, I started physical therapy, and then graduated to Pilates. I am now able to do Pilates three times a week and I can walk pretty far distances. I know that none of this would have been possible if I had not used a wheelchair and allowed my body to rest and heal as long as it needed to.

The doctor I go to for EDS specifically told me to try and never get a wheelchair :( He said all his patients who do end up getting worse from being too dependent. He doesn’t even like that I use canes and crutches on my bad days. I think if you do get one, try your best to only use it when you need it.

I have a similar story. Became disabled after college, once I was no longer an athlete. I lost a lot of friends too and really seemed to internalize my experience. Several surgeries later and a lot of depression later, I am much more mobile, but still have days where I am barely mobile due to joint pain/weakness or dysautonomia.

I’m sorry you are so young dealing with this. If I have to go on long days or event I try to use a scooter. I have RA in my feet. Going to have surgery in August to fix my toes. My neck is arthritic but my PT massages it so it is so much better! I have exercises I do. I had limited mobility till then. I have terrible TMJ that I am getting fixed now & it effects my neck. I wear a special retainer for it. Getting collagen injections too in the jaw. My big pain is back, hips feet etc. I don’t know if a wheelchair would help with your shoulder issues. Maybe rent a scooter to try. Wheelchair & compare? Unfortunately you find out who your true friends are dealing with chronic illnesses. I am much older so I got to enjoy my youth. I hate it for you younger ones. But after having to cancel many “friends” drop off. The main thing is too pace yourself & prepare yourself. I know if I do a lot several days in a row then 1 day at least of sleep & rest at home. Bathing in Epsom salts help too. I use ice a lot for recovery, some like heat. Lidocaine patches too if I am going to have a long day helps me. Good Luck! Ask anything if I can help!