Hello All! Hope you guys are having a lower pain day. I know many of you on here have experienced tremors. Before this evening, I only had them once in my left arm/hand and it was brief. Well, tonight my husband's carpool buddy came home with him to meet me. She is a very sweet girl around 24 years old. She brought me a nice Christmas gift too Anyway, the three of us are sitting here talking and my left arm started trembling and my husband saw it, he had this look of horror on his face. I tried to hold it still with my right hand and that arm started shaking...I have not experienced this before and it scared me (and him).

I have also been having more trouble with my right eye. When the right side of my face flares, of course my eye swells and gets kinda goopy. Well, here lately I have moments where I can't open it. This happens mostly in the morning, my left eye will be open but my right eye is closed and takes a while before it will open on its own. It is very odd.

I do not like this new crap going on...tremors, choking, coughing, my eye....ugh Enough already!!!

When I first got tremors they were bad for about a month and then kind of mellowed out, a flare I guess. I don't have major ones everyday now, and sometimes it's like nothing. When I'm stressed out, tired, etc they're much worse and are super visible to others. The whole nerve line on my arm up through my chest is affected, and my right breast will ache because of it. My arm will get tired because of the muscle movement. And my CRPS is in my feet, not my hands. My feet don't tremor, my left hand is fine.

I guess it's kind of hard to know if you're choking only on your right side. But it sounds like everything is on the same side?

Will it calm down if you think about stopping it and then start back up when you think about something else? I can do that. It's kind of weird, like I have a robotic arm and my brain is trying to control it. Trying to hold it still never worked, it just made it fight more, I really had to control it mentally, not physically.

I tried propranolol, but since my blood pressure is good it just made me too tired, I felt unsafe. Did you talk to your doc about the tremors yet? Choking is scary, I'd want to at least address that for now, assuming it's probably a flare.

Hi Nanc,

I get tremors and sometimes they are pretty severe. I can look like this women in the video. I found this video http://www.youtube.com/watch?v=qM7dTyEzSIQ and my husband will apply pressure as shown in the video and IT WORKS/helps! It's crazy how it will help stop them. I don't have the belt but wish I did, and I don't use the biting on a tongue depressor but it still helps to have pressure applied in the area shown in the video. I have had tremors today and used this technique to get things to settle down.

Tremors are also the reason I take gabapentin, along with the fact that it helps my neuropathic type pain (shocks). Maybe this will help for you too. Mine is mostly in my legs, but my arms and legs can all get going at the same time. It's exhausting on the body to tremor. It can make your muscles feel VERY weak.

The choking, for me is also neurological. Coughing, not sure about that one. My eyes don't get goopy, but the water like crazy when I am flaring. My sensory gets involved too, specifically my ears. I become VERY sensitive to sounds and have a ringing in my ears.

I sure hope things settle down soon hon and I hope the video helps!

PS... you can go to 4:40 on timeline and watch her in her doctor's office. It's a little more clear.

Thank you for posting this video! Does anyone know what DOT stands for (it is in the title of the video).
Also, NANC - is it possible that any of your symptoms are related to a med you are taking (side effect)? Just a thought. I am sure this is scary for you, and I hope it resolves quickly.

Hi Lottie, What a great question! I had not noticed the acronym before but it is Sacro Occipital Technique (SOT). I found this about it http://www.chiroaccess.com/Articles/...spx?id=0000291

Hope this helps!

Hey Nanc,

I am so sorry to hear you are now experiencing this on top of everything else!! It is painful and frightening for sure!

The small muscle spasms/tremors had been happening to me since the onset of CRPS II/Causalgia in my right hip/thigh, in fact it was the visible spams in my thigh that originally helped in getting a quick and accurate diagnosis. Initially they were only somewhat painful and what I would call small spasms confined to the originating CRPS site. Recently (past couple of months) where as the condition has been spreading rapidly the spasms are now affecting both legs, arms and even my diaphragm and they are now more intense and cause the uncontrollable jerking. The first time the jerking happened was while I was driving to a doctor appointment, which was most frightening because the pain and jerking took my foot of the pedal and distracted me from driving. As you know all to well..the reality hit that I might not be able to drive much longer. That was a terribly low point for me!

After talking with my NS and Pain Management doctor they are part of this disease process and are referred to as "myoclonic jerks". Muscle relaxers, activity even just isometric movement, epsom salt baths, massage are the recommendations in preventing/coping with these types of tremors. Sure wish there was more I could offer you in terms of how to handle these.. I'm just as much at a loss as you at the moment Are you also having very rapid spread right now? Like many others that have shared recently that they are having severe spread (been thinking about you too Vrae, Bram, AZ-Di, Renee and others) mine has progressed quite rapidly during the last couple of months

I do hope these and your other symptoms begin to subside some real soon!

Be good to yourself,
Tessa

Thanks for your reply chaos!

No, not everything is on the same side. My RSD/CRPS started almost 23 years ago in the right side of my face. Now, in addition to my face, it is is both hands, feet and shoulders, left arm and left leg...oh, and they think in the trunk area. The tremors were in my left arm and hand. Boy did my arm ache after that! It came right out of the blue. We were all having a nice chat, then it started.

I have not talked to my dr yet. I just saw her on Dec 6 and am not scheduled to see her again until Feb 7. I usually see her monthly but I am having my SCS's removed on Jan 9. I am waiting for some bloodwork results from her, so I figured I would wait for them before I call her...you know, two birds one stone

Thanks for the video Vrae...very interesting!! Maybe we could try the pressure, but don't think I could handle biting on the depressor since the RSD in my face. I cannot take gabapentin, I have tried it a couple of times and had bad reactions to it. I actually cannot take or tolerate any of the meds they use for RSD or nerve issues. It really stinks to have to "tough" this mess out.

My ears ring too, constantly! I have also noticed more recently that noise sets me off. We went to a store at the mall last week to get a gift card for my niece. The music was so loud, my husband saw my face and the tears welled up, it was awful!

Anyway, thanks again!

Hi Lottie! No, it wouldn't be a med side effect. I do not take anything for my RSD symptoms. Sometimes I do take promethazine (nausea from demerol) and demerol for pain, that gives me a headache so I try not to take it unless I HAVE to. It is scary...my husband was talking about it again last night. I think it kinda freaked him out.

Hey Tessa! Thanks for your reply and for the info! You are right, I know that feeling of losing the freedom to drive all to well. Not something I thought would happen at my age (just turned 47). It is saddening. My driver (husband ) is very gracious and doesn't complain one bit about driving me...thank goodness!

Mine began spreading a few years ago and has continued. I don't know if you would call it rapid spread here lately because it is most everywhere, not everywhere but close. But, I have been having these new symptoms pop up. After having this for almost 23 years it still changes and surprises me.

I really need to find a new PM dr, but will wait until after my SCS's are removed in a few weeks.

I am soooo sorry to hear what you are experiencing. I hope you can get some relief soon too!

Nanc