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Ehlers-Danlos Syndrome User Group
frustrated
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
158 members
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frustrated

hey everyone,
I am sure many of you can relate to what I'm feeling but sometimes i just feel so alone. I feel like searching for answers to my pain is useless, and that at some point I should just give up and try to live as best as can, I mean I already am but when I look for answers I feel like all I get is another possible diagnosis and it seems never ending, I now my parents are trying there best to help, taking me to the drs, i need and all but I feel like they don't understand things at all. I am searching for answers to my pain so that I can live my life but my parents think I'm just dwelling on things, i don't know how people deal with this  stuff it just seems never ending
3 Comments
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Avatar_f_tn
Hi!  I have a son who is diagnosed with EDS Hypermobility. Sometimes I doubt the diagnosis because he doesn't have the pain associated with the condition. He has several other health problems, which may, or may not be a part of an Ehlers-Danlos "Syndrome"  (dysphagia, reflux, orthostatic intolerance, scoliosis, hormone deficiencies, and more).
Perhaps if his orthostatic hypotension wasn't so severe, he would have more pain, because he would be more active, I don't know.

I wanted to direct you to Dr. Forest Tennant, a pain management specialist. I have heard from many EDS'ers who are getting very excited about some of Dr. Tennant's research, which justifies and explains their pain. I don't know much about it, since I am focused on finding answers to other problems right now, not pain, but you may find some answers on Dr. Tennant's website.  There is also Dr. Brad Tinkle's "Joint Hypermobility Handbook", available online, which I found extremely helpful in explaining most of the associated co-morbidities, and some of the treatments available.

I hope you are able to find some relief for your pain, and helpful information for you and your parents.

Enzy
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3109210_tn?1342664082
thank you!!!
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1903798_tn?1333908888
I too have it and the pain didn't hit till 37 years of age....
It is so frustrating!
My DD was diagnosed today and once again I know more than the Dr.
Hang in there!
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