Hi all I m Patti My dad and I both have EDS I m 38 My daughter Savanna also...
You're not missing much at U of M.
I recommend an Osteapath. Surely the staff could ring your insurance for pre-approval (if u asked nicely). <3 Good luck!
A GOOD PCP is most important. They manage all the specialists.
I also go to South Bend, to Dr. Lavallee as he also has EDS and understands completely. I know pain, but I too have a more minor case. I'm sorry your daughter is hurting. An osteopath helps me with the bone misalignment and if I could go more frequently, I would. Exercise also helps--ANYTHING. Even sitting on the couch and lifting her legs up. Or laying on her stomach and lifting one arm up several times to strengthen the shoulders. Simple things can help. I get worse when I'm not exercising and am continually amazed at how I feel better when I do. Gentle hugs and blessings!
Two most important to start:
1. Good PT who will research
2. A good PT who understands zebras needs to be treated differently than normals.
Wait we are not normal? Lol jk
I thought I was normal. everyone else is weird because they cant bend :p
Lol so true
funny thing.. I really believe it. haha