Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

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Old 01-28-2009, 04:53 PM #1
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Default Muscle relaxant question....

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!!
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Old 01-28-2009, 05:16 PM #2
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Originally Posted by MominPainRSD View Post
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 -
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Old 01-28-2009, 05:46 PM #3
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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!!!
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Old 01-28-2009, 07:44 PM #4
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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!!!
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
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Old 01-28-2009, 08:39 PM #5
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Hi Mom! : )

I am on Baclofen also.. 10mg 4 times a day. I am sleepy but I really don't have any other side effect from it. It helps me a lot! Before Baclofen, I had rolling spasms every single night when I went to bed.. They would last for an hour or more.. Since Baclofen I only have the spasms maybe once or twice a week instead of every night, so it is helping.

As Diana said, cold really sets off the pain and spasms.. If I get started shivering then it goes wild on me.. 58 degrees is cold where you are Diana..I
remember how hot it used to be there.

Wishing everyone a whole lot less pain..

Pauliana
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Old 01-28-2009, 08:51 PM #6
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Quote:
Originally Posted by Pauliana View Post
Hi Mom! : )

I am on Baclofen also.. 10mg 4 times a day. I am sleepy but I really don't have any other side effect from it. It helps me a lot! Before Baclofen, I had rolling spasms every single night when I went to bed.. They would last for an hour or more.. Since Baclofen I only have the spasms maybe once or twice a week instead of every night, so it is helping.

As Diana said, cold really sets off the pain and spasms.. If I get started shivering then it goes wild on me.. 58 degrees is cold where you are Diana..I
remember how hot it used to be there.

Wishing everyone a whole lot less pain..

Pauliana
Yes.....I will say that when I get really cold (or tired) I find that I cannot warm up. I have to lay in the bed for hours with heating pads all over me to get warmed up. I really don't mind it, though......being from the South originally, I LOVE the cold in contrast to the incessant heat and humidity I grew up with. We can always put on more clothes.....we can only take so many off without being indecent (I will speak for myself at least) and scaring the neighborhood children and animals!!!

I had to chuckle when Diana wrote that too (about the high being in the fifties!! You know I love you Diana!!!). I think we're expecting negative zero lows tonight here. It was a balmy 20 degree high today!! I LOVE it!!!!

Warm wishes to all!!!
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Old 01-29-2009, 07:37 PM #7
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Quote:
Originally Posted by Pauliana View Post
Hi Mom! : )

I am on Baclofen also.. 10mg 4 times a day. I am sleepy but I really don't have any other side effect from it. It helps me a lot! Before Baclofen, I had rolling spasms every single night when I went to bed.. They would last for an hour or more.. Since Baclofen I only have the spasms maybe once or twice a week instead of every night, so it is helping.

As Diana said, cold really sets off the pain and spasms.. If I get started shivering then it goes wild on me.. 58 degrees is cold where you are Diana..I
remember how hot it used to be there.

Wishing everyone a whole lot less pain..

Pauliana
Pauliana,
Hey girl, Talk about a space cadet...I totally forgot you lived here before. I thought I had it all together but...the RSD, Men O Pause and Drugs....Well.... What can I say. I really space out a lot of stuff. LOL But truly, I can hardly wait for summer 120 in fine with me. I got some oxygen yesterday, the bones are cold and painful. I agree the cold seems to set off more spasms. Swelling has set in as well. My hands and fingers want to curl under, which is something I have been fighting for years. I'm on top of this constantly...what a lifetime job. Thanks for the pm...I'll be in touch. You take care. Di
Was there anything I was suppose to send you????
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Old 01-29-2009, 06:19 AM #8
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I have been on lots of muscle relaxants as I have REALLY bad Myoclonic spasms in my left leg which is where I have the RSD! My Pain Management Doctor and Neurologist both feel that the Myoclonic Spasms are a complication of the RSD and they have tried everything to get them under control and nothing has worked so far. The Intense Physical Therapy Program calmed the spasms down quite a lot however they are gradually returning at the moment unfortunately!!

The muscle relaxants that I have been on so far are:

Baclofen - I was put on this when I was first diagnosed with RSD - at that point I only had spasms in my toes. The Baclofen didn't work at all and my PT's felt it made me too floppy in the areas that didn't need to go floppy - I couldn't sit up etc.

Diazepam - I was put on this when I developed the Myoclonic Spasms and it didn't help at all and made me feel really sick!!

Kenadrin - This didn't work and made my pupils really dialated!

Propranolol - This didn't work and affected my Blood Pressure a lot (Propranolol is often used for people with High BP to try and lower it).

There are lots of others that I have been on also but I can't remember the names, sorry (RSD memory!)!!

Here's a link to the video on Youtube of my Myoclonic spasms in my leg:

http://www.youtube.com/watch?v=xIXakErNBpE
http://www.youtube.com/watch?v=qE_OwuilOew

I really hope you find something to help you soon as I know how awful the spasms can be! Just keep in mind though that everyone is different and what works for one person, might not work for another ... no two people are the same unfortunately when it comes to dealing with this illness!!

Take care and please keep us all updated when you can!
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Old 01-28-2009, 06:10 PM #9
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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
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Old 01-28-2009, 06:15 PM #10
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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!!!
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