Oh my poor Billye:

There I go again, making jokes, and you are in horrible pain.

I do apologize and I hope you find some relief.

Take care of yourself.

Melody

LJ i would like to know ,as well what you are doing for pain? Your description
of Ocycontin sounds exactly the way i felt on it. Everytime i come out
of the hospital i get a new diagnosis of a autoimmune disease.I sure you
are very worried.. Sue

I have had symptoms of dystonia in my feet,and tardive dyskensia in my jaw. I have also had twitching,jerking and myoclonic jerks while I was on oxycontin in the hospital. also I have an unbelievable startle response. I just about hit the roof with a loud noise. I have corresponded with people who have very similar occurrences, but they appear to wax and wane. One week they are there,next week they are a bit different or even gone.The more I stress about them the worse they seem to get. When I finally accept them they dissappear. Go figure?

I hope you are able to figure this out,as the pain aspect doesn't sound very good.

Shiney Sue: For pain the only thing I've been taking is oxycodone at night--15 - 20 mg. During the day I just keep adjusting my position to be as comfortable as I can, and wear the corset/brace thingey. Last night I tried 100mg of my friend's Tramodol, which he had for rotator cuff problems. It didn't touch the pain, but then I gave myself a hard massage of the long muscles of my back, and I felt better than I had in days. Also, I realized I'm a bit constipated (a bit?) and whenever that happens it feels like my intestines are pulling on my back and bladder making the pain worse. So I'm going to fix that problem today. The issue with the oxycodone is that it is just so constipating. When I take anything to combat it, I find I go the other direction.

Aussie: I had no idea that anyone here had any movement issues. This is the first they've come up. My startle on the oxycontin (this is a long acting oxycodone) was so extreme I jackknifed with a door closing or alarm ringing. Giving that I'd just had spinal surgery, it was the most painful post-op experience. What are you on that it causing your movementi ssues?

General question: How many of us have movement issues: twitches and dystonias and myoclonus type movements? What meds are we on?

Finally, after feeling so much better with my self-massage (rolling on a ball or rolling pin) and knowing I'm constipated makes me more optimistic that maybe this is NOT RSD.

A book I've owned for years has exercises for the back muscles that you do laying down. It's called 'Oh! My Aching Back' by a Leon Root. It's out of print but available thru Amazon and other places. I've gotten it and given it as gifts for friends w/back issues.
It is a 'period piece' due to the times it was written [discussions on pain-killers are now sort of funny], but it's got good explanations on how your muscles work normally and abnormally when stressed in any way. Why they spasm and all that. The exercises are all pretty passive as you are flat out on your back or stomach doing them.
The illustrations are easy to follow and classic - new books seem to use identical ones.
I don't know if these would be acceptable with your issues LizaJane, but some of these exercises could probably be done and not make your issues worse..providing you get that old doctor OK. Seems sometimes that the more times change, some things remain the same [these exercises for example].
Hope this helps! - j

Due to spinal cord damage: Ataxia, muscles that don't work, spasticity, and, eventually secondary dystonia.

rose

Hi LizaJane, I have had RSD in both legs for going on 5 years now, and I was diagnosed with CIDP 2 years ago. I do not experience pain directly associated to any specific movements. What does hurt is when something rubs against me when I am moving, sometimes the wind hurts my legs. I have had 2 Doctors tell me that they think that my CIDP is a natural progression of the RSD. Who knows ? I can tell you I cannot differentiate the RSD pain from the CIDP pain. They are the same if you ask me. I do not get pain from movement alone. I do REALLY hope your pain goes away, DO NOT LET IT GET THE BETTER OF YOU!
BIRD

This has all been interesting and imformative, Thanks..I was taken
off of Oxycondin,all those body movements scared me.Had a talk
with my Neuro she said let's try (what's with let's) anyhow i went
on Morphine Sr 30mg. at night same in morning if i need it and 15mg.
in afternoon that makes me to sleepy don't do it very often. But
she was right the twitches went alway..Been hearing alot about
oxycondin on the news,not sure now what it was anybody remember??

dalek i wonder if you can do those exercises on a firm bed,like i do my
stretching excercises?? Ok i even do my yoga on the bed. I got a
mat and on the reverse side was a massage mat..It ended up going
to my daughter-in-law. Even though i have lost a lot of weight i still
have fear of getting on the floor and nobody finding me if i can't
get up.

LJ this pain from hip Down sounds like my friend Bob evey since he fell
and broke his pelvis bone,it's been 3 months now,and he complains of
same pain. Anyway anyone else get med. twiches??? I hope everything
works out for you.

Sorry 1 more question Mrs. D have you heard of study on Darvocet and
Alzheimer's?? to all Sue

Oops, forgot myoclonus. But my experience may not be very relevant to this thread anyway. No meds.

rose

I think your experiences ARE relevant to this thread. Because you know, we've never discussed movement issues here before. And I'm wondering how many of us have them. What do you associate yours with? From the B12 damage itself?