Hello all!! I am just curious as to what muscle relaxants you guys are on (and that's "ya'll" to my fellow Southerners!! )? Do you take them for twitches, spasms, or tremors? What side effects do you notice with them? Do you have the twitching symptoms all over your body or only in the RSD affected areas???

I am not having much relief from the ones I am on (Zanaflex during the day and Flexeril at night). And.....the twitching is all over my body even though my RSD is only in my feet (although I get intermittant bone pains up to my waist now). I'm trying to determine whether I might have another condition on top of my RSD causing the twitching (and sometimes rapid twitching....not quite a tremor but annoying as heck).

Any information would be helpful. Feel free to PM me if you'd prefer. Thanks to all in advance for responding!!

Hi,
How are you? I get terrible muscles spasms in all four extremites and in my rib cage. Sometimes they take my breath away.
I take Baclofen for the spasms. It helps most of the time, but sometimes the spasms get out of control. It has been awhile since they were prescriped, so heres a site for you to review. I Hope you are fairing ok. What does your doctor say about the twitching? HUGS. Di

www.drugs.com/baclofen.html -

Yes!!! I've gotten them in my rib cage too!! It's only happened a few times when I bent down wrong (apparently!!) but it is sure painful!!

The twitching has been written off as "stress" by most doctors (Ugghhhhh). I've actually had them mildly for about four years now, but they have gotten much more intense (and annoying) since my diagnosis last month (with the occasional tremor-like twitching). They tried me on Skelaxin but that gave me terrible headaches so I've gone back to the Zanaflex. Yes.....Baclofen.....that is what I've heard over and over on this forum. I will look up the link you provided.....thanks for the input!!!

I'm hanging in there. That is about all I can say. My feet have progressed from turning red when I stand to dusky blackish, purple. I don't think that is a good sign. Isn't that stage 2??? The bone pains hit me out of the blue and move around. I liken it to an animal chewing away on me. Nothing really seems to help that pain. My toes are threatening to curl up on me on my left foot (where it all started) but I'm moving them around and stretching them as much as I can. It just seems like it's spread so quickly in me (since around December 5th when I first noticed symptoms). I cannot walk at all without VERY soft, cushiony shoes on and even then, it is slowly.

It's been frigid here and snowy......but I LOVE it!!! Lows below zero and highs in the 20's. My RSD is just going to have to deal with it!!!

OH.....another question......I know that ice on the RSD infected limb is a big no no, but what about where there are no symptoms??? If I burn myself or sprain or twist something else (or simply want to build a snowman)??? Will ice on another part of the body cause it to spread there??? I am afraid to even brush my teeth with cold water now.....I use tepid (just to clear up that I AM still brushing my teeth!!) Thanks!!! Take care all!!!

Hello, MominPainRSD

I take baclofen 10 MG 1 in the morning and 1 at noon and 2 at night
My spasm are very bad, I can spasm off a table, chair or fall from them
I go in to full body spasms, no side effects for me on them, they say they can make you sleepy, I wish, but not for me, even on what I am taking now, I still have spams, it can go from one leg to an arm, then all over, even my back dose it, you can see my muscle going nuts under my skin also, kind of freaky,
then it courses pain on top of it, ,,,, like someone has kick the pooo out of me in some muscle's,,, even my teeth chatter, looks as I am freezing when that happens,
I been on Flexeril,, and did not do anything to help me,
I hope you find something that help's you, soon,

take care
Pease

Holy cow!! I am SO sorry for you. I do NOT have anything like that.....yet. How long have you had RSD??? I feel kind of bad for complaining about my little twitches now!! Mine are just annoying......they won't stop and won't go away no matter how I move around......I'm not having a lot of pain with them. So....you get them all over and NOT just where your RSD is?? Thanks for writing!!! Please take care!!!

I take baclofen....my wonder drug! I went on it because the jerking of my legs and arms was getting to be too much and the muscle spasms were moving past annoying for me. I used to deal with it multiple times a day, and now have them maybe 2 times a month or less. Baclofen,soma and zanaflex are all for long term use, the flexeril is a short term use relaxer and shouldn't be taken for longer than 3 weeks. I've heard a lot of people say zanaflex didn't work for them very well or for long.

The only side effect is sleepiness. It made me sleepy for a few days but then it went away. I take 3 a day and have no problems.

Hugs,

Karen

I've actually been on the Zanaflex for over a year for my TMJ. No, it doesn't seem to help much, but it DOESN'T make me sleepy (the Lyrica does enough of that). Hmmmmm.....I've never heard that Flexeril shouldn't be taken long term. My doc KNOWS I'm on it. I think a phonecall to him is warranted. It doesn't seem to help with the twitching either (I just imagine how terrible it would be without ANYTHING)......I will mention the Baclofen as an alternative. I'm thinking of going off the Lyrica because it makes me SO tired I can't stay awake (and I get REALLY low blood pressure for hours in the morning). I only take it in the evening (50mg), and I'm drugged for a good 16 hours after. I can't do that with a five year old to take care of. Thanks for responding!!!

we all have something a bit diff, and someone may have more of something then outer, they just look bad, when I am going in to full body, I think stress makes then worse also, not sure, I know riding in a car, can make them a lot worse just as soon as I get out, look out, I been strap down to a table before due to them and that is after I been given a shot of Valum, like for an MRI
or getting a test down, and my Dr makes someone stay with me to keep me from falling off the table, I even had my foot come out of the stirrups ( us lady's know what I am talking about)
and almost kick my GP,, I felt so bad, but its not me doing it, just looks bad
after that I told my Dr I am never going to do that again,

but never feel bad for asking something ,,, we all have something that is worse,
then are fellow RSDers,

I got RSD from an auto crash, back in Nov of 05, but did not know what was wrong till July of 08,
we all just thought it was my neck, Hern C4C5C6C7 from being hit
then on the 3rd day, I had burning pain in my thumb,that burn so bad that I could not stop crying, I felt so dumb but it was real,,,, and it hurt, as we all know,,,, that just kept getting worse, then weakness, stiffness and so on ,,and 20+ Dr's later, and from NY to NJ to Oh, and Mi, was told full body RSD, the 1st time hearing about it,
I am mad cuz I was begging for help, just thought I needed surgery on my neck and I would be ok, WRONG!

I hope you find the right med you need,
its nice to hear, you are not alone, with this, but hate that anyone has this,

peace

I'm so sorry it took so long for you to be diagnosed. That is what is maddening about this disease to me......that SO many docs have no idea what it is. I actually ask EVERY SINGLE PERSON IN THE MEDICAL PROFESSION that I run across if they have heard of RSD and, if not, I take a moment to educate them......whether it be a doctor, nurse, or technician. I could care less whether I offend or embarrass a doctor. I make it my mission in life to raise awareness about this disease SO THAT people like you and so many others don't have to go to 20 docs over years before they're diagnosed and properly treated. My hubby had skin cancer removed from his hand yesterday. As he's cutting into him, I take the time to ask the doctor (with nurse present) if he'd heard of RSD (he had.....but knew no details.....so there follows the conversation for the duration of the excision!!). I at least waited until AFTER he gave hubby the numbing meds to bring it up!!!

I thank you so much for taking the time to answer my questions. I greatly appreciate and respect all of your input!!

OMG! We had a cold front come in and our high is 58...and that is cooold for me. When I get cold I have a hard time getting warm and the pain just gets worse. I can't even imagine! I did live in Alaska for 5 years and Colorado, but I'm so use to this weather, now .

Just to answer about ice or cold. I personally have to keep my hands out of the refrigerator and never mess with the freezer. Cleaning out the refrigerator or freezer is not optional anymore. Others may not be effect the in the same way. But, just walking down the freezer isle at the grocery store is not pleasant for me. Seriously!

I hope you get things figured out soon. You are right to keep asking questions. Take care of your sweet self! Oh, I take 20mg of Bacolfen three times a day, for spasms. All the best.. Di