I've been having intermittent jerking muscle cramps, Charlie horse-like cramps, spasms and, rarely, actual seizing/freezing up of muscle groups since my CRPS symptoms started over a year ago. These have occurred in my upper arms and upper legs. It's mostly my entire right leg/upper plevic area that's affected with RSD with some places on the left leg but not nearly as bad. I haven't considered my arms affected yet.

I've recently been having almost constant spasms in both my upper arms and upper chest and upper back area. This turned into burning pain the other day. Then the burning pain started moving down to my wrist so both entire arms were burning. It made me wonder if this is beginning of spread, and also (my question) do people experience these spasms/cramps/seizing/freezing of muscle groups in areas other than those they already consider to be affected? Like do you have cramps in your arms but only consider one leg affected with RSD?

Denise

I have muscles cramps (charlie horses) from time to time in my left calf. Now my rsd started in my right wrist and hand and shoulder and spread to my other hand and both feet and stomach. I don't know if the muscle spasms in my left calf are from the rsd, but I've read it sometimes happens like that. I have to ask my pm dr when I see him next month and I'll let you know. I have been getting cramping pains in my stomach for over a year now. I finally found out it was partially from gallstones, but also may be from the endometriosis that is still in my pelvic area. It could also be from the rsd spreading to my stomach because of the three surgeries I've had there. RSD can spread after surgery and I have a total of I think 12 incisions (I'm loosing count) that were made on my stomach in the past three year. My drs aren't certain but they say it's possible. I used to have spasms and an deep aching pain that was cold and went right into the core of my bones. Then it fluctuated from stabbing aching pain to burning and then back to aching again. It could be that you have spread. I have had rsd for over three years and am now certain that it was spread for me. But it could be something else for you. You may want to see your neurologist, pm dr and gp to see what they think. After a while, you'll know your rsd body better and know what is rsd spread and what is something else. I will pray that it isn't spread. I hope you feel better soon. From your friend, Renee.

I was experience same symptoms since my rsd started ,so far my flare ups well calm down a little bit with my scs implant,I only supposed to had my right foot and ankle affected according with my pm dr but in reality my whole body suffers when flare ups appear . Stress is a big no no when you have flare ups,get more intense ,spasm, neck pain back pain running every where also happen but some dr prefer to ignore it,in my case,but my body feels the effects , with the scs is been more in control lately but to get to this point I was and still have side effects from the first surgery,gabapentin supposed to calm the nerves,lidoderm patches num your skin, flexeril or baclofe.n help with the spasm neck pain,that combo work for me but is not accurate all the times ,some times no matter how much meds or increase the scs frequent no even that works,I also still getting use to ,rds/crps is so hard to understand ,hope you get better soon and you can be able to find a combo of medications that work for you,scs works but depend of your life style,if you are to active might not be appropriate for you,you need to slowdown with the scs unit implanted,is a nightmare some times to be honest,works but you ended with more side effects,mentally and psychically ,blessing and hope you find a way to control your flare ups soon,keep the faith is a long road to walk,so ,try to do and practice how to relax yourself in those days,relax and relief your stress is the only thing that really works,medications help but remember ,mentally we are tired,and that gets us sooner or later,try to relax and soon you will be able to control the flare ups,good luck and blessing to you,from jesika

I also have other areas of burning including pelvic area, random running cold spasms, muscle tightness (mainly calfs ). Tonight both shoulders are burning. I went back to work and I think I will soon have to quit due to clothing irritating my skin. I have not wore a bra all weekend and dread it tomorrow. Sometimes my pants hurt my thighs. Mine got better with Neurontin but I have break through symptoms. Hope I don't have to increase dosage very soon since it has only been 6 months since I developed RSD from carpel tunnel surgery. I take a high dosage already. I feel like it is spreading through out my body at times. Good luck to all. Maybe we will all be able to be able to take the new medicine due out possibly this year and get relief.

I was having the same thing, and my doctor prescribed Lorezapam. He told me to put it under my tongue and let it dissolve. It helps tremendously!!

What new medicine is this?

Neridronate only had clinical trials on CRPS 1 types. Trying to get FDA approval now. Everyone who took it has been symptom free x 1 year. Not sure if type 2 will be eligible. At least closer for help for us

I will hopefully be getting an off label bisphosphonate infusion (three consecutive days for four hours a day) using a protocol used for Paget's patients in the next few weeks. It will not be neridronate since it's not approved for use in this country yet. Hopefully the protocol is similar enough to help. There have been other studies with smaller numbers of participants that have shown good results using other similar bisphoshonates. FDA approval can take a long time. I want to do this asap.

Has anyone else here had bisphosphonate infusions using a US approved drug but off label use for CRPS?

Denise

My labs came back good enough to have the bisphosphonate infusions. I'm so excited I'm just beside myself! It sounds like it could get started within the next few weeks.

Good luck to you,remember if the first time doesn't work,give a second try,and never give up,from Jesika