I'm dislocated (grrrr)

[ReineDeLaSeine14]

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...

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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.

*&$^%&#%^*&^&%$^$^%$!!!!! http://www.butyoudontlooksick.com/boards/images/smilies/icon_twisted.gif http://www.butyoudontlooksick.com/boards/images/smilies/icon_twisted.gif http://www.butyoudontlooksick.com/boards/images/smilies/icon_twisted.gif http://www.butyoudontlooksick.com/boards/images/smilies/icon_twisted.gif http://www.butyoudontlooksick.com/boards/images/smilies/icon_twisted.gif http://www.butyoudontlooksick.com/boards/images/smilies/icon_twisted.gif

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????

[stacekins]

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. :D

[ReineDeLaSeine14]

Ok so when you get to New Haven you're going to get off I-91....

[stacekins]

rofl

[ReineDeLaSeine14]

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

[xxBrittany]

Oh my gosh!
I cannot believe it was dislocated like that.
Well actually I can.

But anywho.
How are you feeling now.
Any better?:spoon::spoon:

[Mcsuperawesome]

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...

[xxBrittany]

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.

[Johnna]

I hate it when doctors think they know everything. I once had a doctor tell me I'd GROW OUT OF MY EDS! -_-

[Chiara]

hey Johnna, excuse me, what does "grow out of my eds" mean??
-.- Sorrry. Me stupid italian girl. -.-

[xxBrittany]

It means, that as she gets older and continues on with her life, she will eventually not have EDS anymore.

I hope that description/definition helped! :)

[Chiara]

yeah, thanks a lot!:wink
i've got to the conclusion that docs are 50% stupid.
:sick026:
anyway, many spoons to you :spoon::spoon::spoon::spoon:

[xxBrittany]

And I totally agree with your thinking! :)

[ReineDeLaSeine14]

50%? The other 50% must be chocolate pudding :)

[xxBrittany]

Bahaha. Chocolate pudding!?! That sounds so veryyy good right now.
THANKS Steph. Haha.

[Doctor Ken]

As far as I understand, when they do this proceedure they are injecting steroids directly into the area of the back that is being affected by pain. Steroids can reduce any swelling in the area, therefore if the nerves are being pinched by a swelling in the area then it can help with that.

[xxBrittany]

Great explanation!

[mces0421]

So how are you now? Hope your okay. But when I read your story it gave me an idea to consult a doctor because I am also suffering back pain. I have numbness at my left side. It started when I gave birth. I will update you after my check up.

[ReineDeLaSeine14]

Thank you...please do see your doctor just in case you had an injury during childbirth.

Congrats on the baby!

[xxBrittany]

Awh. My best friend is 7 months pregnant and today we found out it's a girl!
I am so excited. Her name is going to be Marley Grace.

But seriously, take Steph's advice and talk to a doctor incase something DID happen.

[Chiara]

steroids injections slow down the sinthesys of collagen, so that they're not recommended at all in our kind of sindrome..

[xxBrittany]

Yep! :)

[ReineDeLaSeine14]

Which is why EDS and inflammatory arthritis don't mix...I've been taking steroids by mouth for four months now!

[xxBrittany]

Ouch. I never thought bout that Steph. Makes sense!

[ReineDeLaSeine14]

Yes and I'm still on them but I don't find them helpful anymore...they did help me gain weight and stuff which was a good thing.

I have to see my rheum...

[xxBrittany]

Hmph. Well, do you want some of my weight gained from Meds?! Haha.

I used to be a whopping, 125..and now I'm 209.
:(

Ugh. I hate it.

Plus MY back is now giving me trouble..and I have been going to the chiropractor.

[ReineDeLaSeine14]

Nah I'm good...Still on the steroids but am weaning off! I'm now actually a tad overweight which has NEVER happened to me before! Weird because I had an eating disorder but with therapy and support it's staying away! Grrrr anorexia...down with you!

[xxBrittany]

Glad that you are keeping the anorexia away! I am sure that didn't help with your EDS at all.

[ReineDeLaSeine14]

Oh no...I really messed up my SI joint when I was underweight...when I was finally hospitalized for my ED and bipolar I had been dislocating EVERYTHING while inpatient...it was kind of bonkers...

[xxBrittany]

Ouch, ouch and MORE ouch!