After 30 years of RSD, I am experiencing horrible contraction of my muscles. My hands, my feet.... I can not longer take Baclofin as it was causing cramping. I take Klonopin and now another muscle relaxant.
I experienced a horrible car accident 8 years ago and now have herniated discs down my spine, which i am sure is not helping. The wind and barometric pressure seems to make it works.
I was doing so well..... Nancy

I also have the muscle cramping and it's awful. I take tizanidine which helps, not sure if you have tried that yet. But it also doesn't knock me out like some meds once I adjusted to it so I can take it and drive, go to work, etc. Might be worth a shot if you haven't yet and the ceiling dose is really high, I don't know what but I have yet to get anywhere near it per my PM doctor.

I wear Correct Toes on my feet & a glove fitted with a hard insert that keeps my hands from curling at night. I am going to try finger cots, too. I have found I have fewer spasms & cramps since I have been using these devices.

Thanks for your reply! I just got on tizanidine myself as the Baclofin was causing spasms.... I was on Baclofin for so many years before car accident.
I was just talking with another long time RSD person and she fell again. The motor control goes in the ankle and I am getting that too. I think I have picked up my foot enough but no..... I fell this winter thinking i picked up my foot enough for a curbstone, but I didn't. I fell and rolled ( X gymnastics), so I didn't hurt myself, but the people I was with, I heard them go woah! I hadn't figured it out yet, that my ankles and my wrists are not cooperating....

I had an RSD friend who is passed now ( from something else). Her toes curled under her feet. She had many surgeries to try to correct it. She had pins put in her toes, but the RSD was stronger than the pins. The toes would still curl under and left the metal pins standing up. Can't imagine how painful it was for her.

I am glad that is working for you.

I mostly get it in my left leg where there is a nerve pinched from the herniated discs from the auto accident. The rest of the body settles down with the Klonopin as it keeps the acetocholenine flowing down the mylen sheath and keeps it on the myelin. There never was a generic for it but there is now, but it doesn't work for me. I need the name brand Klonopin. That stops the body from seizing. When I was doing so well prior to the car accident, I had cut back on it. Seems I need to go back up on it.....

What helps for me is bed rest until at least 10AM, more like 10-12AM, then nothing during the day apart from my medication (gabapentin/buprenorphine) as far as muscle relaxing things go (or I would fall asleep and I wasted part of the day as it is). Then at night I take clonazepam, which is muscle relaxing in part. And that seems to do the trick quite well.

I also have trouble sleeping at night, and so I would typically sleep 4-6H for every 2 days, and now that is better as well due to that medication.

But everyone's different.

The image of those pins is forever burned in my mind. Thank you, by telling me about your poor friend I am more convinced that I am on the right track sticking with home solutions that are not invasive.

Word of advice on the tizanidine...don't take it during the day until you know whether it makes you drowsy. Or take with a lot of caffeine. I have found if I take it I need an extra cup or two of coffee or coke zero.

I take my all-over & muscle relaxant (clonazepam) at night. It knocks me out cold within half an hour or so. It never fails, and a good side-effect is... I can sleep! Thank God! Otherwise I'd sleep like 1 short night (4-6H) in 2 days. Without fail. And that's no good.

It works at night and it still has its effect during the day for sure.

After 24 years with this disease I still have twitching, hands claw up, my toes spasm, while trying to relax I often get full body jerks. I have gone through myoclonic jerks from my neck down to my feet for years and they hurt so bad. Sometimes along with my meds I still make trips to the ER and they give me IV’s with Valium and a muscle relaxor. Took Soma for years but not now. Please drink a lot of water each day along with whatever treatments you may get. If I am not hydrated really good I can get severe muscle spasms in my legs, toes and hands that are unbearable. I have full body RSD. Sending hugs 🤗