So when I sleep I have tremendous pain and stiffness, sometimes closing in both Hands. It's horrible ,,, any thoughts? Wish we could get a break for the holidays.

I am sorry to hear this Deb. I get this sometimes too...where my hand will claw up really bad to the point where I have to physically bend all my fingers back with the other hand. It usually happens if one hand gets pinned down under me and immobilized for the night. Other RSD areas can get still and sore...but my hands get the clawing thing. I hate it and it's SO painful. I haven't really found anything to help stop it from happening. It doesn't happen every night for me...maybe once a week or so...and it's always if I get one of my hands stuck under me in the night where it can't move.

Dear Debbie,

My CRPS began in foot following surgery, but recently I have been having burning and pain in both arms and especially in the hand on the same side of the body as the "bad" foot.

Last night I woke up with severe hand pain. Fortunately it did not linger into the day, but it makes me worry.

Definitely I would discuss it with my doctor. Could be a spread, could be sleeping position as catra suggests.

I am on muscle relaxers (2 kinds) for control of tremors, contractions etc that left untreated can lead to permanent dystonia. So - follow up - see if PM can suggest and treatment meds. For your own PT, general gentle range of motion exercises (PAIN FREE!) may help to keep the area limber. Doing these along with slow relaxed "belly breathing" which creates a relaxation response may be helpful.

Please let us know how it goes - as you can see - you are not alone in this!

Aloha,
Jenny

Sorry...just wanted to make sure I was clear. My hand pain IS spread from my RSD...it claws and gets painful because of immobilization. This happens if I hold something in my hand for too long without moving it too. But it also happens sometimes when I sleep if it ends up immobilized for a period of time (and it doesn't take THAT long for it to happen).

Of course you should get it checked out. I just meant to say that I have yet to find anything that helps it and I am sorry to hear that you are having issues with this Deb.

Thanks for your replies. It does seem worse because of the way I sleep ..on stomach w hands under pillow...it is definitely spreading but docs have no clue how to slow it down or stop it....they just scratch their heads...my life is taking such a dive with my whole body weakening..just feel like I can't take much more.


Debbie

You might want to try sleeping on your side, with a down pillow propped against your lower back so you can't roll and a second pillow in front of you to rest your hands. This has helped me in the past at times.

I hope that i am now able to post links. This link has information about treatment for this condition which can be debilitating if it goes beyond jerks and tremors and manifests as it has for catra.

I do not know what treatments you have had catra, and do not in any way mean to be disrespectful of your personal knowledge dealing with this issue. I mentioned the meds my PM has used for me, and I have had some relief especially from the extreme muscle cramping, but continue to have off and on tremors.

Here is the link, with some references to studies done by Schwartzmann and some recommendations for treatment:

http://www.rsdrx.com/Movement%20Disorder.pdf

I hope this is helpful and i am so very sorry that you both are experiencing this painful situation. I hope my PM can prevent my muscle spasms from progressing.

Love,
Jenny

Propping them up may help some. I had to learn to prop my left arm against me because of the swelling...first from the original injury, then from the RSD. May not work for you, but it my be worth trying. Hope it lets up and allows you to get some rest.

I have RSD in both my arms. And my hands crap terribly from it! at night i can only sleep on my back, i learned 4yrs ago that i was no longer gonna be able to sleep any other way. And i prop both my arms up. It helps some. but its probley best not to sleep on your stomich and its bad to keep your arms like that anyways in anybody.

Also i figured out when my left hand really started to crap is when i relised i started to loose function in it. so my last 2 fingers dont do much, nothing productive anyways and i cant hold anything in my hand. And recently my right hand has started to crap more, so im worried its going to do the same thing.

I am wondering if you folks are getting muscle relaxants for this? The worry is that if it continues, it may become permanent. I have seen some very distressing photos of flexed and twisted arms, hands and elbows.

The most consistent treatments I have read about are clonazepam (which I am on) and for more severe cases baclofen.

"Muscle cramps (spasms and dystonia) can be treated using clonazepam and baclofen."
Source: http://www.healthcommunities.com/rsd...reatment.shtml

But I have read about these 2 medications in other sources as well.

I DO hope you will find not only a comfortable sleeping position, but a treatment plan to prevent the tremors, spasms and clenching from progressing.

By the way, I am kind of new here - so "Hello"! I put a little bit about me in the introductions area if you want to know who this new kid in town is.

Aloha,
Jenny