Paula-OT ? for ya

iVillage Member
Registered: 04-28-2007
Paula-OT ? for ya
2
Sat, 05-03-2008 - 11:24am

Hey P-

I have a probably very silly question for you. I appear to be hyper mobiile, especially in my arms (shoulders and elbows), and it was noted from EI that Roan appears the same with her knees (I suspect her hips and ankles too, hence the turned out foot). Anyway I have always had back issues, especially lower back. Once or twice a year I'll pinch a nerve and its excruciating for a few days. This time round though I woke up with it last Sunday am (no idea what caused it) and its effectively morphed from pinched nerve pain to achy, dull can't stand or even sit for for long pain. I saw the doctor but as its a wait, rest and repair injury there wasn't much he could do. I do feel like one leg is a little longer than the other (same happened last time-around 6 months ago).

Is this kind of pain, limb shortening associated with EDS? I know EDS is an all over the map syndrome, but with Roan's joint issues and my own I am beginning to wonder. Where would I even look to rule out a diagnonis?

Ta,

Dee

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iVillage Member
Registered: 06-25-2003
In reply to: roanmom
Sat, 05-03-2008 - 1:03pm

Dee,

A rheumatologist confirmed my EDS DX and a peds rheumy gave my kids their provisional DXs. You can see a geneticist too, but IME the geneticist appeared to have looked the disorder up in books and then tried to get me to do (or not do) exactly what was in the books, whereas the rheumy basically took one look at me, told me to take off my sweater, then hold my arms out straight to the sides and pretty much made the call right there. She did a few extra steps, but she picked up immediately that I have a bunch of skeletal "abnormalities" (armspan longer than my height, extra long neck, big ribcage) that the bookbound geneticist failed to find.

Clinical experience counts for a lot.

My kids were referred based on my diagnosis -The gene is autosomal dominant, so they have a >50% of having it. Then they were evaluated by the peds rheumy, and the results surprised me. Siobhan came back as pretty much definite for EDS. She is hypermobile all over. The doc thought Peter's issues were more due to low tone in the upper body than to EDS. His lower half is square in the 'normal' range, whereas his upper body and extremities are madly hypermobile.

I get the one-leg shorter than another thing too, it is usually when I have put something out of alignment in my pelvis or in the sacroiliac junction (where the pelvis joins the spine at the back). It is a dull, nasty pain. I get it on the right so driving is an issue.

I have never found an answer to this one except pain management. Every now and again it appears to correct itself, but it uncorrects before I have a chance to put in enough strengthening exercises to keep it there. I do recommend that the next time that area is "right" you learn how to strengthen it to keep everything in place. Physical therapy would be the best way to do this.

So yes I think you should see a rheumatologist, get yourself evaluated for EDS and see if you can be referred for PT to learn what you can do to stabilize and preserve that area.

I HTH

-Paula


visit my blog at www.onesickmother.com

-Paula

visit my blog at www.onesickmother.com
iVillage Member
Registered: 02-28-2008
In reply to: roanmom
Sat, 05-03-2008 - 2:34pm
I'm a physical therapist and Paula is right on about getting a PT referral. The right PT can really help you. Look for someone familiar with sacroiliac dysfunction. Not all PT's handle it well. Hope you feel better soon!

Andrea, mom to

Graham
Miles
Anson

Andrea, mom to

Graham
Miles
Anson