/ Si joints

February 19, 2004

:

I have tried everything I can think of. The Chiro won't touch me because as he

put it (and I agreed) it would be back out of place before I got to the parking

lot. I see my physio every week and have for 3 years. All my muscles are really

weak so when he tries to get me to do resistance exercises, my hips just flop or

I can't control the movement. I have an SI belt but it wont stay in place and a

larger back brace that also wont stay put. I have been to the medical supply

store a few times and whatever gets brought in, either I can't manage to get it

on tight enough or it just won't work for the problem. I haev had nerve blocks

and recently a denervation procedure. But the flare up lasted so long, I don't

know if it is worth it. This causes me the worst problem of everything. I have

to sleep on the couch or else I can't fall asleep. Anywhere between 2 and 4

hours later, I wake up because I'm in agony from something in my back shifting.

Then I try to go into bed and if I'm lucky might sleep for an hour or 2 before I

get woken up again. I hav all sorts of popping and bone on bone grinding that

appears to be in the area where your SI joints join onto your lower back. It is

so creepy, it feels like my back is falling apart and the sensation is like

having someone follow me around all the time scratching their nails on a

chalkboard.

Although I have other joint problems, I find the SI joints are the absolute

worst in terms of pain and very limited progrss despite considerable effort. THE

SI joint instability has led to problems with facet joint narrowing and I now

have mild lumbar scoliosis. I have to constantly keep twisting at my back

because of the pain, stifnes and pressure. I have been on narcotics for 3 years

because of this but if it gets really bad nothing helps. I also use the TENS

machine a lot

Ugh! Anyone who has any other ideas, please let me know. I think the SI joint

problems must be a bout the worst area affected with the EDS because, unlike a

wrist, you can't really splint it, opeate on it or stabilize it when it gets

profoundly hypermobile. When you can't exercise, even a little, that adds to the

muscle weakness and increases problems supporting that area

<sigh>

Joyce

February 20, 2004

I have something similar going on; beginning to realize (for me) that it is

actually three issues - the hip that is twisting (mentioned earlier this

week), the spondiliothesis, and the t-spine feeling like it is collapsing.

Somedays I cant walk but a block and it feels like the pressure is going to

take me down. I can lay down and do a pelvic tilt (and have actually done

that in stores -- embarasses my children) or I go to the wall and press the

small of my back there to relieve it until I can find a floor to lay on. I

also have the bone spurs and the buldging discs and the slight scoliosis and

the sciatica.

Anyway; I have went back and started to do all the si excercises; mine are

with the swiss ball; and I find that they help (but only for a few hours)

and it will get all achey from being too worked out. I got one of those

conair mats for the bathtub and I have begun doing that after I exercise and

use it when the achiness starts --- that seems to help quite a bit. Got rid

of the sciatica for an hour at a time a few weeks ago when it was a problem.

I had to do it several times a day and it lifted within about a week. I

found it to be worth every penny.

http://shop.store.yahoo.com/medicalsupplydepo/cobamatthspa.html

On 2/20/04 8:46 PM, " ceda " <ceda > wrote:

> Ugh! Anyone who has any other ideas, please let me know. I think the SI

> joint problems must be a bout the worst area affected with the EDS because,

> unlike a wrist, you can't really splint it, opeate on it or stabilize it

> when it gets profoundly hypermobile. When you can't exercise, even a little,

> that adds to the muscle weakness and increases problems supporting that area

February 20, 2004