i have EDS with hip dysplasia, i go to washington univelistrsity at st louis, dr clohisy who is a famous hip specialist. they also have a great rhuematology dept there as well who specialize in eds :)
Lizbet: I'm in Michigan with EDS III. I'm sorry for your pain, but I also understand it very well. Have you tried contacting the universities in your area? There may be more open minded doctors at the larger schools who'll have ideas to help you. Hang in there.
My heart goes out to you. I also have EDS. For over 20 years I have had extreme pain and my joints dislocate easily. Spending over 13 years trying to get my doctors to figure out what has been wrong with me they always said Fibro & CFS. I finally found EDS on the internet & asked them to check me for it. They looked at me like I was crazy. Finally when I could no longer walk for more than 10 min they finally sent me to a foot specialist & I was told "You were right!" You're in my prayers!
IM IN STL!! THERE IS AN EDS DOCTOR!!! There are like 10 ish of us in there area... DM me. I know how to at least fix your shoulder pain and I'll give you the doctors name. God bless(:
Hey sorry to hear your situation I also have EDS classical type though I also have several joints I hold in place constantly I am sad to hear your situation. I see this disease as a life sentence inside a prison with no escape. I know that is depressing but we can try to be all fake and positive but unless you have been inside my body and felt the constant pain you don't understand keep in touch I have a video up living with Ehlers Danlos Syndrome
i have EDS with hip dysplasia, i go to washington univelistrsity at st louis, dr clohisy who is a famous hip specialist. they also have a great rhuematology dept there as well who specialize in eds :)
catsanford81 1 week ago
@catsanford81 I ve gone they cant do alot for me
lizbetbathory 1 week ago
Lizbet: I'm in Michigan with EDS III. I'm sorry for your pain, but I also understand it very well. Have you tried contacting the universities in your area? There may be more open minded doctors at the larger schools who'll have ideas to help you. Hang in there.
3075bridget 1 month ago
how are you doing now? i have EDS too. is your situation any better? have you found a doc who can help you?
debradebbiedeb 2 months ago
My heart goes out to you. I also have EDS. For over 20 years I have had extreme pain and my joints dislocate easily. Spending over 13 years trying to get my doctors to figure out what has been wrong with me they always said Fibro & CFS. I finally found EDS on the internet & asked them to check me for it. They looked at me like I was crazy. Finally when I could no longer walk for more than 10 min they finally sent me to a foot specialist & I was told "You were right!" You're in my prayers!
ehlersdanloshelp 4 months ago
IM IN STL!! THERE IS AN EDS DOCTOR!!! There are like 10 ish of us in there area... DM me. I know how to at least fix your shoulder pain and I'll give you the doctors name. God bless(:
katelynnjoyy 1 year ago
Bless you for this video! You are not alone!
Jazzyteach65 1 year ago
Hey sorry to hear your situation I also have EDS classical type though I also have several joints I hold in place constantly I am sad to hear your situation. I see this disease as a life sentence inside a prison with no escape. I know that is depressing but we can try to be all fake and positive but unless you have been inside my body and felt the constant pain you don't understand keep in touch I have a video up living with Ehlers Danlos Syndrome
tcscott17 1 year ago