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Ehlers danlos type 4 help me!

Posted In: Medical Stories 0 Replies
  • Posted By: Anonymous
  • November 9, 2009
  • 09:44 PM

I am a 26 year old female with type 4 ehlers danlos syndrome. I also have severe hypermobility. As a kid it was just cool to dislocate something to freak out the other kids. My parants never really thought it was anything really bad just an oddity.

Then about 6 years ago i was in a car wreck. I dislocated my left shoulder and couldnt get it bacck in... long story short here I had a SAD repair and was in constant pain. I went to a pain managemnt doc who noticed my hypermobility. he told me about EDS and was prettty sure I had it. a biopsy followed adn sure enough I have it and the most dangerous type.

Since that time I have had so many problems with my left shoulder that the Doc's and nurses at the ER knew me by name. To quote asome of them in thier eyes I am a drug addict. I am nuts. there is no such thing as eds. I only want attention. ive gone thru doc after doc. in the last year i had a left shoulder fusion and due to another car accident the same story is being repeated on my right shoulder. I had an SAD repair on that in april... it didnt work
I went to see a new Doc today full of hope because this guy was suppose to specialize in traumatic dislocations and was suppose to understand what eds is and what it entails.
When I got there I had to do x rays which they ended up dislocating my right shoulder.... but i was actaully happy for that because then I stupidly thought gee they can see how easy it happens now" . then i saw the PA he maneuvered my arm and my shoulder would rottate out of socket and back in .. he actually turned pale. when the Dr comes in he examines me and also maneuvers my arm in all different way.. each way he did it, it dislocated in some manner. He asked me to show him how hyper mobile my joints are well when i am standing and shift weight from obne side to the other my hips pop out. and go back in... i show him that. i showed him that if i try to turn a certain way my knee rotates partally out of place. and my fingers and my jaw... and my ankles..

heasks me what do i want to do. I told him i want to be able to live with out having to either go to the ER every week or wrenching my arm back in. He asked me if i smoke i said yes but i am quitting and that is when he told me this " even if you stopped smoking i would do any surgury on you." ok so then what i ask and he says ill send you to PT umm well great my insurnace doesnt cover it . i cant spend 450 a week on PT for 12 weeks besides the PT is to strengthen my muscles... (sarcasm here) apparntly LIGIMENTS HAVENOTHING TO DO WITH KEEPING YOUR JOINTS IN PLACE!!!! I know muscles play some part in it but if i lift a half gallon of milk say, then my wrist and shoulder seperate.... so there goes PT...
well what about pain meds esp after they dislocated my shoulder? NONE i got a broucher on senior pain management place and was told to call them, so i did .. 6 to 8 weeks to get the medical records... 6 to 8 weeks to decide if i am a canadite for the place and then a month to get an apt.

If i wanted drugs to get high, well my parents named me Stormy for a reason... they are hippies if i want drugs i could get them, but I am not wanting to get high all i want is to run my business adn to play with my daughters. I am so close to just losing it all. I hurt so bad and my shoulder is so unstable i cant give my kids a hug ot button my shirt or wash my hair by my self. please some one help me. I am at the end of my rope and cannot live like this any more.

I need to get a dr who understands this and can give me more options than one that will only make it worse. and yes i do need drugs. but not to get high or to abuse... I want them so i can live. if ANYONE can help me please email me at stormygirl1983@yahoo.com

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