My symptoms from EDS have been progressively getting much worse since I turned 18. I am approaching my 20th birthday and I have started to realize how much I say no to doing things with friends and family to avoid the pain I will have to deal with afterwards. My psychologist brought up getting a wheelchair for bad days and super strenuous things, and I have never considered that until now. I just got diagnosed with cervical and thoracic arthritis and I deal with pretty bad shoulder pain. Has using a wheelchair worsened any of these things for anyone else? I want independence to do the things I want without having to suffer after, but I also don’t want to risk making my arthritis or shoulders worse.
Chronic Generalized pain
Ehlers-Danlos Syndrome (EDS)
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!
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.
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 highly disagree with this, a wheelchair is the only way I can leave my house sometimes. Without it, I would be a fully homebody. I think this kind of thinking can be detrimental to someone who has EDS. My doctor is all for mobility aids. We will have this our whole life, it’s okay to make it easier. But. I do see what you’re saying. If a mobility aid isn’t helping you, don’t use it! 💕
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.
4 wheel rollator would be helpful, given the fact that it wouldn’t put stress on your shoulders like a wheelchair would!
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