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I have been hurting for 10 months and there is no end in sight.
Bones, Joints & Muscles | Last Active: Jul 28, 2023 | Replies (43)Comment receiving replies
Hello John, I have Ehlers Danlos Syndrome and also have been waiting for months to see rheumatologist for lots of various pain in joints and bones. Since everything I love to do involves movement, I want to be able to continue staying active as long as possible and very interested in prevention. I am not finding the help I need from any of the Drs I have seen and it seems like the wait is always months to see any specialist and impossible to have a more compressive assessment. I think sometimes when a patient ‘presents’ as fit & healthy’ they don’t always get listened to. I was most interested in the Bones, Joints & Muscles support group and just getting a sense of what other people do who are coping with these issues.
Replies to "Hello John, I have Ehlers Danlos Syndrome and also have been waiting for months to see..."
I have knee arthritis, I use glucosamine and it helps, plus intense hydration, proper rest. I did a type of cortisone shot years ago for a severe shoulder strain,but was unable to rest my shoulder to make it effective
Hi there- Have you found your way to the EDS Blog on Connect?
https://connect.mayoclinic.org/blog/ehlers-danlos-syndrome/
I have hypermobility spectrum disorder (HSD—I don’t meet enough of the criteria to qualify for an hEDS diagnosis) and can relate to the challenges of finding a specialist. Also agree about how “not looking sick” can affect how we’re treated. Physically, I’m in many ways strong enough to do things but my pain is disproportionate and I was getting all kinds of injuries and PTs and physicians didn’t get it.
I’m not sure where you’re located, but I believe all of the Mayo campuses treat EDS. But the EDS/HSD Clinic is at Jacksonville (it hosts the blog linked above). It’s an investment to travel, and it hasn’t been the smoothest organization especially after the covid public health emergency ended (which affected access to telehealth and causes much confusion), but I still feel it’s been worth it because they provided a comprehensive evaluation and try to provide as much support as possible so you can have the information to try to manage it on your own and with a team at home.
One unique thing is unless they’ve changed their process, I was able to call the clinic directly to ask questions and get on the call list for an appointment. I was quoted at a one year wait, but my appointment was in 9 months from the day I called.
I actually have a rheumatologist because I already have an autoimmune arthritis, but in my experience there just aren’t many people who consider themselves “experienced enough” to treat EDS.
If that’s not an option, there are a lot of online resources for PT for EDS that can both help with prevention and pain. I’m happy to share a few if it would help. (I’m sorry if you mentioned already what kind of symptoms you may have; I didn’t scroll back to look at your earlier posts. Since you mentioned movement is a big part of your life, I realize you may already be knowledgeable about exercises that help with and are safe for EDS!)
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Thanks for the follow up information @riddle. If you haven't tried the search function on Connect, it is really good for finding other posts and discussions for specific search phrases. Here's what I found searching for "Ehlers Danlos Syndrome +coping".
--- "Patients" are part of the cure! – A Mayo Clinic Patient Experience: https://connect.mayoclinic.org/blog/ehlers-danlos-syndrome/newsfeed-post/patients-are-part-of-the-cure-a-mayo-clinic-patient-experience/
@iembellish1 also mentions having EDS and chronic pain here and may have more information to share - https://connect.mayoclinic.org/comment/805844/
@terrirussell also posted about EDS and some overlapping issues here and may also have some suggestions - https://connect.mayoclinic.org/comment/797509/.