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 VANESSA!
Welcome! As you are, I am new to this forum but definitely not new to RSD. It sounds like you are definitely on the right track though with PT.

To introduce myself... I am HEATHER, and I'm not too much older than you, I'm going to be 21 in May. I have had RSD for 7 years now and I know what you are going through with being in high school and having RSD, so if you need a shoulder to lean on, let me know. It can be toughest when you are young with RSD becuase of your peers. I remember many people my age not understanding what it was and making fun etc..

SENSITIVITY... I remember my leg being so sensitive I couldn't sleep with sheets... One of my mom's friends with RSD recommended me using a VELUX or VELOUR blanket. It is extremely soft and so I wrapped myself in that in order to sleep. I remember using stupid things around the house that PT made me tap on my leg to make it not sensitive anymore. And I mean stupid and wierd things such as bottle caps, toothpicks, etc.. At the time of doing it I thought it was stupid but within a year I was able to touch my leg on a more constant basis. I still have days that happen that even a breeze hurts but its MUCH more manageable. PLUS I still do the whol desensitizing thing on my own and its like 5 years after I did that in PT...

BE POSITIVE and if you have any other questions... keep em coming

Thanks, Heather.

That is what I try and do- rub stuff like stuffed animals, pillowcases, etc on my arm to work on desensitization. To sleep I wear a long sleeved shirt that isn't loose (so it doesn't run against my arms! ), but during the day I make myself do things that my arms dislike (like letting my arms feel fabrics/ breeze/ etc). To sleep I try and get as comfortable as I can get, to hopefully sleep better.

I understand what you're saying- rub silly things on the sensitive area so that (gradually) it will become not so hypersensitive. I am going to see if there are any more things like that I can do. Any ideas?!

For desensitization at PT I rub different textured desensitization sticks on my arms/ hands/ shoulders (I am in the "early" ones- there are much rougher ones that I look at and sometimes wonder WHEN I will actually be able to feel such a thing on my arms (!)... like the velcro! And sandpaper!...), and I do a pillowcase rub as well.

Heather, when you were first diagnosed what did you do? What were you told to do, as in areas of meds., PT, OT, etc? If you did PT, for how long until you realized that it wasn't "doing it", and you needed to move on? How much of a help was it to you? For how long did you go?

I am sure I have more questions for you... when I have time. Thanks for offering to help!

Hello:

I have had RSD for the past year in my hand and wrist. Just recently for the past two weeks my muscles in my other arm have been twitching along with my legs and the back of my shoulder blades. This goes on various times throughout the day and night. Has anyone else had this problem? My doctor has told me that this is part of RSD.

Thanks

I have had the CRPS in the left foot now for about a year and a half. Of course no one knew what it was...or what to do.. I had to do it all myself.. from diagnose to treat... I found that wearing an elastic tubing over that foot and lower leg.. not a real tight one, but just medium .. that it not only helped with the swelling, but also.. protected it from anything touching it...and when it was completely covered like that.. it took away the allodynia.... all that running hair brushes and junk over it at therapy, was nothing short of torture. I do remove it at night.. I make a gap over the top of the foot and PULL FAST.. so it only hurts for a second.. THEN.. I use a very very light down comoforter for my bedding.. I can make a "tent" with it and it stays up and off the foot long enough for me to get to sleep with the pain meds.. I can rest well... if it bothers.. just poke it up in the air with the good foot. It is warm in the winter ..no weight and stays put very well. I can actually massage it at night with gobs of lotion or heavier cream. The spasms continue to be an issue, but the pain med makes them subside and they are better when I am ON the foot rather than lying down or off of it....
I use oxycontin and oxycodone...I have tried every known remedy... they mostly make me very sleepy.. I have adjusted to the narcs.. am not addictied in the way that I use it for a good time.. just pain relief... stay on same dose always...I have gone off cold turkey and that is bad.. but no one schooled me in going off..also .. the oxycodone is so short lived, I get into withdrawls if I miss , even a few hours over.. icky.. I probably have more stuff in the "tried and failed" drawer than Michael Jackson, but no urge to try them again.. including methadone, morphine and many others.. nerotin etc.. Lyrica.. Celebrex..which made my ulcer come back.. too many to name.. nerve drugs, tramadol.. those things.. but the oxyicontin and codone are my companions for life unless I can get to the ketamine treatment.. MY DREAM..
Dr Ronald Harbut is my doc of choice, but his clinic is not operating currently.
Money is an issue for his contiuing the work..
Good luck to all.... also distraction therapy is good.. get so involved in something it takes your mind off of the pain and symptoms. My CRPS/causalgia is from doc hacking up nerves on the top and side of my foot after three major surgeries. Should have got it right the first time and I wold't be in this jam.

Sherrie Gregory.. SEASONED Citizen...