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Ehlers-Danlos Syndrome User Group
Still A Pain To Walk!
About This Group:

This group is for members with any form of Ehlers-Danlos Syndrome.We have this group to share info and support for each other. Ehlers-Danlos syndrome (EDS) is a heterogeneous group of heritable connective tissue disorders characterized by articular hypermobility, skin extensibility and tissue fragility. Individuals with EDS have a defect in their connective tissue. It is this tissue that provides support to many body parts such as the skin, muscles, ligaments and organs. The fragile skin and unstable joints found in EDS are due to faulty collagen. Collagen is a protein that acts like glue in the body adding strength and elasticity to connective tissue.

Founded by somemonkey on September 22, 2009
156 members
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Still A Pain To Walk!

I saw the orthopedic surgeon today and YAY no cast for now. First we did XRAYS mostly standing (that was a first) which made me feel like we were doing something different. A little fun when the xray tech would say turn your feet in/out eww not like that LOL. She said I had nasty heel spurs. Moved to Dr waiting room and he came in with another man and told me he was training another Dr. I told him I had EDS and he asked me to show his shadow some things and I though cool this guy knows what I am talking about! After a few I said I really shouldn't be doing this it will cause me more pain and he laughed and said I know but fun too. He said I have achilles tendonitis, bursitis, spurs going up and down, and os peroneum. My EDS friends I know you will google anything you don't recognize. I am to wear silipos gel solutions (like a compression ankle tube with gel pads on it) and heel cups that he gave me. He also said he wanted me to do 3 weeks of PT and I frowned. He said you have done PT and I said yeah makes it worse and I can stretch at home for free. He said we did not have to focus on stretching and ordered ultrasound treatment/phonophoresis/lontophoresis/desensitization. Then if that does not work PRP where they take my blood and spin the platelets out and inject the tendons...then it would be casts or surgery if the other things did not work....headed to PT now:)
1 Comment
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620923_tn?1405964489

  Mel all I can say is ouch,....keep us posted,....
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soccero, and selmaS commented on soccero's status
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soccero I wish this pain would stop... Comment
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