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Reload this Page I'm dislocated (grrrr)

~Classical EDS~ For everyone with Classical Ehlers-Danlos Syndrome. Come here to talk about your daily lives, medications, doctor appointments etc. relating to this type of EDS.

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EDS Kids is a support group and community dedicated to helping children and young adult who suffer from chronic pain resulting from illnesses and genetic conditions like Ehlers Danlos Syndrome and Fibromyalgia. Ehlers-Danlos Syndrome (EDS for short) is a genetic connective tissue disorder which primarily causes chronic joint pain and joint dislocations. EDS Kids is a community dedicated to helping not only sufferers of EDS but their family and friends too.

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Old 03-27-2008   #1
ReineDeLaSeine14
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I'm dislocated (grrrr)
Cross Posted: Just so you know...I've been dealing with pretty bad back pain since November. In January my pain doc told me my SI joint was inflamed and he thought it was my JRA. Since then I've developed more incontinence and worsening symptoms...

**********************************

Well...the cause to my monstrous pain has been found. You aren't even going to believe this.

I went to PT today...and yeah...my left hip (left side of my sacroilliac joint) is DISLOCATED. Completely. It was turning backwards. The SI joint is composed of three parts that AREN'T EVEN SUPPOSED TO MOVE.

But...because I have EDS...mine DOES. I don't know how the h*** I did it either...and it's been like this for a LONG TIME.

Because of that...everything was thrown out of whack...my muscles and joints are inflamed, my nerves are affected (hence the incontinence and foot pain).

I can't believe this...TWO DOCTORS AND AN APRN...have looked at my back. Only ONE found inflammation...the others told me that it was muscular and that I just needed to relax.

*&$^%&#%^*&^&%$^$^%$!!!!!

I'm reaming my rheumy and the school nurse a new one...my PT told me to have fun with it.

Can anyone understand my WRATH????
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Old 03-27-2008   #2
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yeah I can understand that...I'd be ripping people limb for limb on that one. I'll start beating people up. Just tell me where to start.
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Old 03-28-2008   #3
ReineDeLaSeine14
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Ok so when you get to New Haven you're going to get off I-91....
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Old 03-28-2008   #4
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rofl
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Old 03-28-2008   #5
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Well I talked to Dr. Francomano and I need a new rheumatologist! She told me to contact EDNF and CEDA for suggestions and to keep doing my thang and try to get PT assistance. She told me that I need to go to TCI...she sent my current rheumy info on Tethered Cord which was mad cool of her. Oh and she wants me to ice my back LOL
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Old 04-13-2008   #6
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ohmy
Oh my gosh!
I cannot believe it was dislocated like that.
Well actually I can.

But anywho.
How are you feeling now.
Any better?
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Old 11-26-2008   #7
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Arfbjh

That has to stink.
A similar thing happened to me, one doctor told me my hip wasn't sublexing and that it was just a snapping hip. later It dislocated and all the other doctors were asking why didn't we pay more attention to the possible dislocation. I wanted to scream at Dr. Macarthy.

Hope you feel better though...
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Old 11-26-2008   #8
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Ugh. I hate doctors that think they are right all the dang time.
That's why I almost always get a second opinion because not that many doctors are trained with EDS around here. So you never know if they are going to give you a good bull crap answer or not.
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Old 12-26-2008   #9
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I hate it when doctors think they know everything. I once had a doctor tell me I'd GROW OUT OF MY EDS! -_-
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Old 01-04-2009   #10
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hey Johnna, excuse me, what does "grow out of my eds" mean??
-.- Sorrry. Me stupid italian girl. -.-
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EDS Kids is a support group and community dedicated to helping young adults and children who suffer from chronic pain caused by illnesses and genetic conditions like Ehlers Danlos Syndrome and Fibromyalgia. Ehlers-Danlos Syndrome (EDS) is a debilitating genetic connective tissue disorder which causes chronic joint pain and joint dislocations. EDS Kids is a community dedicated to helping not only sufferers of EDS but their family and friends too.
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