does anyone ever notice, or experience, in whatever body part is primarly the source of pain or injury (ie, for my the original injured happened to my right shoulder and has sperad since), any almost "uncontrolled muscle movements?" I am not talking about tics or anything of that nature, but, I sometimes feel, or notice, that, when attempting even simple everyday activities, when it comes to my right arm, that it doesn't, perhaps get the correct signals/commands from my brain (if that makes sense). I seem to be more uncoordinated I guess would be the best word......is this normal with RSD? Does anyone else out there experience this? If so, why does it happen? Is it something to genuinely be concerned about?

Hi there,
Yes I do notice uncontrolable muscle movements. My toes spasm and my leg shoots out in front of me whenever I am walking. It is horrible and really embarrassing. The muscle up from my big toe cramps all the time too.

I don't think the spasms are anything to be really concerned about I think it is just another side effect of the RSD. I would speak to your PM doctor about what you are experiencing though. I was and still am really concerned about my balance problem, my PM doctor says that he's never seen it before with RSD.
Hope this helps and if you need anything else just ask
Thanks

and I have had seizures in my legs so bad that I had to go to the ER twice by ambulance...I think the Topamax really controls this now...

I haven't noticed it as much now since I am considered stage III (late stage CRPS)...

But, I would imagine since the disease is neurological and the disease has motor function problems...that your case would not be unheard of.

Love,
Heather

Yes i have them too... No pain ever... I know what you are talking about i have had seziuers that spread.. It started in my right arm and then down in my leg where there is no RSD... Very scary and hard to deal with... I posted a while ago about having mixed signals when i try and attemped something or even when thinking about something... Sometimes i will just be thinking about a typing or scratching my arm or any normal thought and my hand will start making the motion needless to say my PM thought i was crazy ... he asked me to start seeing a psychologist... I was like maybe i am carzy lol

Love J

I hate when they tell us that we are crazy...

It sucks cause all of us will hear it at least once, right?!

How long have you had RSD? and how did you get it?


Heather

Muscle spasms and uncontrollable jerking of the limb(s), weakness and a slow response time are all a part of RSD. Pretty much everyone with RSD has an issue with this and takes a muscle relaxer to help stop the spasms and jerking. Of course, as with everything else to do with RSD, we all experience it to a different degree.

I take baclofen and it has stopped the jerking of my arms and legs and I may get some annoying muscle spasms once or twice a month. I consider it my miracle drug and glad I don't have to end up hurting more cause of things jerking so long and so hard.

Hugs,

Karen

I have myoclonus(muscle jerks) and tremor, and sometomes my limbs has no link to my brain? feels like it

I take Rivotril for the myoclonus this helps, all this is a part of CRPS
Tiril

thank you to all you of you who were willing to share their experiences on this issue. To me, this is one of the most "embarassing signs" that comes along with RSD. It seems silly to use the word embarassing I know, as it is not my fault, nor something I ask for, but, I try my best to maintain certain levels of independence and normalcy, and, it sometimes feel like a slap in the face and a strike against that when I am moving, say, a plate, from, one place to another, and drop the plate, when it then smashes into I dont know how many pieces, for no apparent reason. I guess I am still adjusting to certain areas of my life (as RSD is a part of all areas of our life), and struggling, as i get used to the loss of independence in some regards. It's hard, and I have a tendancy to be too hard on myself.

I don't seem to get muscle jerks as much as tremors and weakness because of muscle loss.

But I have some really odd symptoms as well. Like I don't get the sensitivity to touch as much as constant burning like flames burning my flesh and most times a severe sunburn in different spots of my body. (This is always flutuating as well, most consistantly my neck, for the last few weeks my fingers when they are cold which is always! My knee's, shoulders, lips, teeth...all feel tingling, burning sometimes at different times sometimes at the same time. (That's my flare) Also, I have constant swelling in my left arm since May of 2007, left leg and fingers sponaniously swell.

Maybe I have different things going on because it was caused by venipunture? Does anyone else experience these symptoms?

What is venipuncture? Whatever it is, it sounds painful.

I am slowly learning, through reading others sharing their symptoms, and how they manifest, how, truly, it is different for every single person. Do you often feel sick to your stomach, due to pain, when you are having a "flare" or you notice an increase of pain and your symotoms acting up? Or, anyone else reading this for that matter.

Example: woke up this morning, with back cramps/spasms, and tightness in my lower back (original injury in right shoulder). I took my 900mg morning dose of Neurontin and 1/2 hyrdrocodone. About and hour later, to my surprise, my pain level was about a 4 (it has been months and months since my pain has been that low). So, of course, I wanted to get out of the house and go do something; anything. As, normally, within this last week and a half, I have only been able to leave this house once due to pain. Anyway, so, I felt good, at a 4, and my gf and I went shopping. If there is any pattern with RSD and its sometimes spontaneous onset of symptoms, I know that one trigger is shopping unfortunately (due to have to pull and push, if even just slightly) at the clothing on the racks. So, within about 45 minutes of being there, my pain shot up to a 7-7.5. Once I got home, while the pain maintained that level of intensity, my shoulder burning, bicep area burning, shoulder blade area burning, and numbness/tingling running to my elbow and down to my palm and fingers, I noticed too, another pattern, it being difficult to eat because the pain makes me nausted. Does this aspect, the being sick to your stomach, directly related to the pain, common for people to experience? And, again, and I am NEW to UNDERSTANDING RSD, the way that i just detailed the progression of my symptoms and pain, sound "normal"? These may seem like dumb questions, but, the more I learn, the more I realize how much i need to learn.

So, not such a great day at this point...pain is making it so hard to eat..I'm currently "taking a break"..stepping away from my plate to write this, hoping, it will subside...