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ehlersdanlossupportclub · Ehlers Danlos Support Club - A place to talk about Ehlers Danlos Syndrome
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Reply | Forward Message #513 of 643 |
Hi there,

i am in the dx process right now. i finally had someone listen to me
and not brush me off. My new chiro asked me a ton of questions and
said "i think i know what's wrong with you." She then wrote me a
letter which prompted my new GP to refer me to a rheumy. I see him/her
this week.

i started tearing ligaments when i was in second grade, my feet would
roll over. i have been able to put my foot to the top of my head as
long as i can remember. my shoulders became an issue as i got into my
teen years. sometimes the pain was so intense i couldn't lift my arms.
i became a life guard and the repetitive swimming caused my shoulders
to get much worse. They brushed me off even though my shoulder sounded
like a rock grinder.Since then I have been told it is bursitis,
tendonitis, etc.

i have had 3 tumors, 2 of a tendon sheath. i have sprained both ankles
and one ankle in particular seems to come apart somehow when i am
walking or if the is pressure at an angle.. ie i went to a yoga class
and couldn't do some positions because the weight against my ankle
would cause it to separate. i fell once while living in the US. i did
not have insurance and couldn't afford the $1000 to spend the day in
the ER but I spent weeks in agonizing pain. I am pretty sure i
dislocated a rib. my jaw also dislocates.

bruising is out of hand. the bad ones leave permanent marks on my skin.

my skin is stretchy in some places but not in others.

i could go on but you get the idea.

nice to meet all of you. Any suggestions and tips when i go into the
rheumy would be great.

thanks




Sun Mar 4, 2007 10:58 pm

paintedchicken
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Message #513 of 643 |
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Hi there, i am in the dx process right now. i finally had someone listen to me and not brush me off. My new chiro asked me a ton of questions and said "i think...
paintedchicken
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Mar 4, 2007
11:01 pm

Hi & welcome. My name is Lisa Schoenberg & have been involved with the Ehlers Danlos National Foundation for @ 20 years & have been invloved on several lists...
foundit1999
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Mar 5, 2007
5:01 pm

Lisa, I am just glad to finally understand that I am not crazy!! Thank you, Shelley foundit1999 <lisa.cherry2sky@...> wrote: Hi & welcome. My name is...
Shelley Sikorski
lostintheclo...
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Mar 6, 2007
3:09 am

Thank you for the welcome Lisa.:o) I will copy over your email addy for future questions. I apologize to everyone for taking so long to get back here. Life got...
paintedchicken
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Mar 15, 2007
10:15 pm
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