Aase MArit

[Guest guest]

HI Aase Marit

I have problems with my lower back also and also higher up (between

my shoulder blades), so it is not only the SI joints, but those are

the ones which just makes things so difficult.

- Ugh! I am havin problems with my mid bacjk because of all the twisting I do to

my lower back. There is one area where I can actually feel rrrriiipppp. One or

two thoracic vertebrae have also become unstable.My physio thinks it is fascia I

feel tearing. Still feels awful

That is a problem with the SI joints too, if it goes out, it goes out

again much more easily. So after it happens, I have to be much more

careful. So if it happens one time when I am trying to get some sleep

e.g. in a hotel room, it often happens many times the same night. It

- I too have major problems sleeping in unfamiliar beds.

Are you unable to lay down too? How do you sleep? How do you handle

it in your every day life? Does it go out for sure if you try to lay

down on any surface too? Or does it happen now and then?

- This is the routine: I start out on the couch, eithre on my side with pillows

behind my back or on my back propped up with 3 pillows and 2 pillows under my

knees. The most I have lasted is 4 hours. I take sleeping medication but don't

seem to get more than those 4 hours. When I wake up the first time I head into

the bedroom and attempt to sleep on my stomach. From there on I wake up seveal

more times then finally give up an go back out on the couch and watch TV.

Sometimes I wake up in severe pain from something shifting and pressing on a

nerve. Its pretty hard to get back to sleep when that happens to you. Everything

from walking to sitting to laying is a problem. Literally every few seconds

something painful is gtting compressed and I have to keep twisting and

twistingat my back. Sometimes the pain gets so bad I can't think straight.I

can't stand more than 15 minutes in one spot. It is absolutely agonizing

I was actually wondering that maybe if you have your SI joints fused,

if you maybe would have to do something about the lower back at the

same time. I was totally unable to find anything on Medline about

just fusing the SI joints...

- I don't think they can fuse SI joints. They can fuse vertebrae. IF there was a

way to fuse SI joints, the new stiffness and restricted movement in that area

would cause muscles around it to work improperly and either put more stress on

you lower back, hips etc or cause new instabilities over time, much like what

happened to the SI joints to begin with. You might just be trading one bad

problem for another

I am getting really tired of it, because I really miss being able to

get proper rest. Also I miss a lot to be able to sleep out of my own home

without the hassle of the joint(s) going out all the time. When it

goes out, I have to get it back then and there, there is no way I can

sleep with it out. That is just not possible.

- I know what you mean! I start dreading night coming around supper time. I am

just so sick and tired and worn out from dealingwith the same stupid problems I

can;'t fix.

I wish you luck finding something. I think, as with so many lousy things with

EDS, that trying to fix the problem might actually make it worse or cause a new

one. This is going on 4 years for me. Anyway, it is 1 a.m. One guess why I'm not

asleep...

Take care of yourself,

Joyce