Re: / Si joints

[Guest guest]

Joyce,

I'm so sorry to know how bad your SI joints are. It sounds absolutely

agonizing! I will try to make some suggestions, but you may have already

tried them. Have you seen a spinal surgeon and had a myleogram? Not just a

Chiro. The instability may be further up the lumbar spine. It's ahorrible

procedure, headache afterwards ,sometimes severe. But they run you through

the CT saca too with the dye in place.Have you tried Glucosamine

Chondroitin, I use Cosamine DS. It does help the arthritis in my spine but

does nothing for my scoliosis(lumbar area). I'm not as stiff. I also had

facet narrowinf of L4-L5,L5-S1, had bilateral laminotomies, but I still need

a spinal fusion to help with instability. How are your feet, are you flat

footed? If so, see a podiatrist to get orthotics, they are made to fit your

feet if you have no arches. They custom fit them by making cast molds of

your feet, then sending them to a lab to reproduce. It helps with alignment.

If you now have scoliosis one leg is now shorter than the other, so you

would need a shoe lift in the shorter leg shoe. All this might help with the

SI. But the most important thing is all of this plus a consult with a Dr.

that specializes in the spine. This can be an Ortho Doc that does nothing

but the spine or a Neurosurgeon.

I understand yopur pain and I'm so sorry. Don't give up. Let me know if

you've done these things or not. I'll keep my thinking cap on. Please write

back! Take Care!

Hugs, S.

I hope some of this is helpful!

/ Si joints

> :

>

> 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

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