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Has anyone been diagnosed with Ehler’s-Danlos Syndrome (EDS)?
Bones, Joints & Muscles | Last Active: Jul 1 6:22am | Replies (23)Comment receiving replies
First, thank you for sharing so much info. I am learning from you. My brother & son have the small indentation in their chest. As I think about it, I was a gymnast in high school and part of college. My back was super arched and my arms are long and very flexible. My hEDS was just diagnosed about 3 months ago. I twisted my ankle twice and went down on the second. I also experienced a morning when I couldn’t get my head up off the pillow due to stiff neck. Have you had any joint replacements? I have 2 knee and one shoulder replacement. One knee was expected due to skiing accident at age 20. I listened to one Bendy Bodies podcast-very good. I agree on the pt as a life commitment. You have been through a lot. I’ve been told there is no genetic test to diagnose EDS. My husband discovered it by reading about it. No doctor mentioned it or the collagen deficiency. I am on meds and recently started Naltrexone which helps a lot with pain. Do you need meds? It’s so true that after 60 everything does downhill. I do have gratitude for many things like my husband, family, out of state🙄, and good friends, my little dog. And now I have you to talk to😉. Have a great day! I might try acupuncture. I know how it feels to be scared about a part of the body-it’s so distressing.
Replies to "First, thank you for sharing so much info. I am learning from you. My brother &..."
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@sue15 There are numerous subvariants of EDS. Our son has hypermobile EDS and was diagnosed at puberty when we noticed that he has pectus excavatum. There is a genetic test but does not determine the hypermobile variant. There is a laboratory at MUSC in Charleston that is searching for that particular gene (some of the researchers have EDS themselves). Our son had the genetic test. And of course did not show the hypermobile variety as that gene has not yet been found. His diagnosis was based on the Beighton score when the doctor wanted to rule out Marfans. He had 2 shoulder dislocations as a toddler and preschooler but the pediatrician didn't diagnose EDS. I now wonder if I have it due to all of the issues I have had since I was a child as my siblings did not have similar issues. Some of my issues are similar to yours but I was diagnosed with a variety of issues by rheumatologists. I just think that physicians weren't that aware of EDS back in the 60's and 70's. I wish you the best.