Has anyone had any muscle spasming/ twitching/ shaking really bad so that you can hardly do anything? I have had it bad enough that my arm was shaking and I could hardly get it to do anything and I couldn't get it to stop... is this normal in RSD?

I have had the spasms before, but not that bad. What is your experience with them?


Sorry for so many questions... I am new to RSD (diagnosed a month and a half ago) and I have so many questions and I am trying to figure a lot out and to try and get better I am trying to do the best things. It is helpful to hear from others with RSD/ their experiences and so on.

Thanks for the help.

Hi Vanessa,

I suddenly realize I haven't said a proper "hi there and welcome" to you - ooops!
so.....Hi there! Welcome! I think it's just great that some more youngsters are joining us, though shocking that you should all have to endure this at your age - are you really only 16? Wow, that's tough. I'm really interested in how this disease begins in people, what started it for you?

A few people were talking about spasms recently, so I'm sure there are others who suffer from this too, you aren't alone.

I have RSD in my left hand/wrist (luckily not the dominant one) brought on by a colles fracture after a nasty fall. So far no spread, but RSI started in my right hand and whole arm. Keeping it at bay, kind of...

I have agonising cramps in my calf muscles - but I've had them all my life, and I've a host of other stuff giving up on me - old age, don't go there..

Keep asking the questions, you are doing absolutely the right thing in finding out as much about it as poss - good for you

all the best, Happy Christmas!

Thanks for the warm welcome. I am so glad that I found this site. It has been helpful to talk with others who also have RSD. I love the different doggies you've had in your avatar. My avatar is of my dog! Yes, that is really my age!


I read one man's article on RSD, and he thinks that RSD is all started from an over active sympathetic nervous system. It all makes sense to me... things keep clicking as I read more and more. I am trying to do everything that I can to work on my RSD.

Here's what I do at home for PT:
~~~~~~~~~~~~~~~~~~~~~~
At Home PT Check-Off List:
__weight bearing on table
__rubberband pull down
__rubberband pull up
__cup stacking
__bottles on/ off shelf
__elbow flexion w/ 2 lb. weight
__wrist flexion w/ 2 lb. weight
__arm stretch on table
__shoulder shrugs w/ arm movement
__shoulder squeezes (held 5 seconds)
__clay squeeze
__ball roll on table
__cool/ warm water baths 10- 20 mins. each arm
__lotion on hands/ arms
__pillowcase rub 5 mins. left side
__pillowcase rub 5 mins. right side
~~~~~~~~~~~~~~~~~~~~~~~~

I am going to PT as I mentioned. Each time I am there for 3+ hours, and I work hard there. I take the pain meds before I go to help me get through it. W/O the pain meds at PT I cannot do the excercizes (I am in too much pain... I cry through it).

At home I am doing a lot of what we do at PT, but I can take it easy and take a lot of breaks between it all.


As I mentioned in my previous post, I have to go to PT for desensitization, strengthening and ROM. My ROM has improved somewhat, but I cannot get my arm lifted straight out in the air itself. The muscles are very weak.

Do you have any ideas of what to do for sensitivity to touch? That is a major problem for me. I am just SO sensitive. I am doing desensitization sticks at PT, fluido (ground up corn husks blown all over your arm w/ heat!) and whirlpool.

I am thankful that my Dr. found out I had RSD before it got worse, so that hopefully I can recover.

Thanks for the help. I must go now, my arms are had it! Typing is not easy, but I am trying to keep my hands moving and I'm trying to do as much as I can.

to hear of all your pain at such an early age..i have had rsd for 13 yrs now...and i know all the pain that you are experiencing...it is very overwhelming most of the time..my rsd is inmy left arm..from elbow to the fingers..i use lidoderm patches to keep anything from hitting or blowing at my arm...a fan wind hits me and the pain sends me sweating,shaking and sometimes pass-out..i have muscle spasms all the time..since last year i have found out that i also have fibromyalgia from my neck and all down my back. primarily down the left side of my body..but it also effects the right side too..i have very, very limited use of my left so i over-use my right...which is causing me a whole lot of stress..what happens if i loose the use of voth my arms??? but try hard not to dwell on it too much..so much else going on.. now for the last 3 weeks or so i have been diagnosed with vertigo!!!!! ahahaha as if all i have isn't enough... not allowed to go to work,drive can't even walk a straight line and falling constantly...more tests next week for this...i also have been having mini-strokes...been thru all the tests and they have no clue as to why...maybe stress??? anyway to answer your question...yes,with most ,muscle spasms are part of our day to day life...i have done all the therapy,pt exercises and all the drs(all 5 of them) have suggested that i do..and so far no improvement..but you are young..so hopefully they caught it soon enough to help you...me? at 45 looks like this is the life i have and am trying hard to accept it and deal with it...depression is constant but am getting counseling and seeing a psyc. to assist me there...good luck to you my friend..have a happy holiday and here's to some pain-free days for us all in the new year......moonstar

Hi Vanessa,

I'm sorry to hear about all that you are going through, and hope you get some useful feedback at this forum.

You asked about muscle twitching, so here's my experience:

I have CRPS type II (which is basically RSD from a known and defined nerve injury) resulting from a needle injury to my right arm while donating blood almost 2 years ago. Mine has spread up the arm to my shoulder, neck and right side of my face, although the arm symptoms are the worst. I just switched from carbamazepine (Tegretol) to 300 mg gabapentin (Neurontin) 3-4 X a day, which luckily works well in controlling my symptoms most of the time. Unmedicated, my primary symptoms are burning pain, aching pain, sensitivity to touch, cold, wind, etc, excessive sweating in my right armpit, and minor redness in my hand (but no significant swelling right now).

For the last year, I have had a constant regular twitch, about every 2-3 seconds, in the ball of my right thumb. Since it's in a very small muscle, I call it the world's smallest dystonia. It started right about the time when my symptoms worstened last winter. Also, especially when my symptoms are flaring and are not being controlled by medication, I have a lot of twitching all over my right forearm. It's not strong twitches, but makes my forearm feel like it's vibrating. Fortunately, none of these twitches seem to significantly affect function of my arm. I do, however, have a problem with muscle contractures in my right hand. The muscles in my hand are very tight, and I feel like I'm fighting tight rubber bands when I spread my fingers. My hand doesn't twitch, however.

I don't know if this is helpful, but this has been my experience.

Annie

Dear Vanessa -

Hi. I'm very sorry to hear that you have "classic RSD." Although there is the old expression about if you have to have something, you may as well do it right. It sounds like you're really taking PT quite seriously, which is great.

The good news in people your age is that they tend to respond to therapies very well, in particular, it is my understanding the in-hospital ketamine treatments have shown very good results with teenagers. For more information, I would urge you to look at the "plain language article" entitled "Overview of Ketamine Infusion Therapy," by Philip Getson, DO, that appears at top of the RSDSA Medical Treatment page, and which you can click on here: http://www.rsds.org/3/treatment/index.html I would encourage you to discuss this article with your parents and your pain management doctor.

However, short of ketamine therapies, I can say something about cramping and spasms, where they have been a major part of my RSD/CRSP experience for the last five years. So far, I have found that what works best are meds specificically designed for Central Nervous System (CNS) induced cramping. So, in addition to the pain medications (ocycodone/Oxycontin), Neurontin, a medication I take for shooting/stabbing pain - Xanax - and another to hopefully prevent gray matter atrophy secondary to chronic pain (Namenda) there are three drugs I take specifically for cramping/spasms:

1. Zanaflex (4 mg. 6/day)
2. Baclofen (10 mg.) [½ to 1 tablet as needed for severe muscle spasms]
3. Quinine (5 grains at night)*

Now, the Zanaflex takes some getting used to, as it made me pretty sleepy when I first started taking it, at a much lower dose. And I've been on Quinine for so long, that I don't know if it's doing any good or not. The stuff is one of the oldest medicines out there and is pretty harmless by all appearances. But Baclofen is really the star of the show. Unfortunately, I'm unusually sensitive to it and it sort of screws up my short term memory, so it's not my principle anti-spasmatic; for other folks, it's the drug of choice. That said, when I woke up the other morning with horrible neck pain (my RSD is typically in my legs and feet) I got up to take something, and it felt like someone was threading a copper wire through my cervical spine! Fortunately, the Neurontin, Baclofen and Zanaflex were right there. I took them and went back to bed and was fine thereafter.

I would encourage you to discuss these drugs with your pain managment doctor as well. However, they are obviously nothing to plan a young life around. Which is why I brought up the issue of in-patient ketamine infusions.

Good luck. As you must know by now, we're all here for your support.

Mike

* I'm also given Marinol - synthetic THC/marijuana - for cramping, but I doubt very much that any pain management doctor in the country would make that one available to a high school student. Sad to say, there's a lot a prejudice against young people when it comes to handing out truly effective analgesics and the like.

Hi and welcome Vanessa!

I'm Kate, my rsd started when I was 23, from a blood test injury. I've had it in my right arm (hand, arm, shoulder) for 6 years, and in my right leg for a year. I also get muscle spasms and twitches, and I take baclofen for it. I take 50mg a day.

I've basically taken this for the whole six years (besides during 2 pregnancies ) but was on 25mg daily until about 2 years ago when it was raised up a notch. I weaned off it a few times in these six years, just to see if it was still helping or not, (as I would have flareups and get some cramps and spasms), and found that without it I was TEN times worse- with constant spasms and cramps in my arm and hand, and they were so debilitating, I just couldn't function at all.

So maybe you could talk to your doctor about whether a muscle relaxant may be beneficial for you, if it can work in with any other medications you are on. Sometimes muscle relaxants can clash with other meds, and lower your blood pressure- leaving you dizzy when you stand up etc- and give you other side effects, so make sure your dr says its ok for you.

I hope you can find a way of reducing these spasms etc.

x Kate

Vanessa, I've experienced both, and still do. My rsd is in both hands, my right arm, and the chest area on the right. I get muscle spasms in both hands that are so bad I literally SCREAM in pain. The jerking, well, lets just say I best not get too comfy with anything hot in my hands. Those come on when I relax. It's kind of similar to those jerks you get just before you fall asleep at night, only they happen when I'm AWAKE fully, but relaxed, and it happens in my arms and sometimes all over. I could do some major damage if someone is sitting too close. In fact, I HONEST TO GOD woke myself up last week cuz I punched myself in the face TWICE during a bout of those twitches. SERIOUSLY! No matter...it was time to get up anyway

I am a new member here. Just to tell a bit about myself, I am 13 years old. I have had RSD for about 5 years now. Once when I had a nerve block done, my leg was twitching so badly that I couldn't sleep. I couldn't even sit down because I would fall out of my chair! My ankle would also twitch a lot. This was actually a good thing, even though it hurt a lot, because shortly after I started to get better.

Welcome, Becca! Can you post a NEW post up top so everyone can see you, and welcome you? We are so happy you found us...though we are sorry it had to be under these circumstances. You've had rsd since you were 8? Oh my goodness, hon! That's awful! How did you get it, where is it, and how are you faring these days? How are you faring in school and with friends, and family, etc. We do have a few members who are in school also with RSD so you've come to the right place.

Great to see you sweetie!