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!! :wink:)? 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!!

How are you?
 

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.:hug: 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:eek: out of me in some muscle's,,, even my teeth chatter, looks as I am freezing when that happens, :thud:
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! :eek:

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!!

MominPainRSD
 

OMG!:eek: 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 :sunchair:.

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.. :cool2:Di

Hello MominPainRSD
1st I am sorry about your hubby, I hope he is going to be ok,
now that must be hard, for the both of you, being sick,

Just a bit of info, you might want to look in to,
Here in Mich it is law, that RSD is real, here is the law as it is here in Michigan
please look up your St, and see if there is a law on RSD, if so, everyone in the med field have to learn about it, and more, it is law,,, but its seem its been up to us to make sure they do that also, you can call the RSD foundations in CT, and ask them to send all the info to any hospital or Dr's you might want to see,, they will send it out for you, also do not forget about the
EMT's that is near you,(the EMT near me are learning about it) and so on, but look to see if RSD is Law is your St
if not, you sure can start looking in to that, if you want to, Even my own Lawyer did not know about this Law, when I found it, I sent it on to him
and that help my case, :p
sorry about getting off track here,

I think its going to be up to all of us RSDers to bring RSD out of the closets
no one is going to do that for us, :eek::mad:

again I am so sorry to hear about your hubby, also,

Peace '
:grouphug:

https://www.legislature.mi.gov/(S(uw...e=mcl-333-5141

That is TOO cool!! I did NOT know that. I will certainly look into it. I may be walking slowly, but by golly, I can still walk. I'll hand deliver all this info about RSD to every hospital, pain clinic, doctor's office, EMT, and PT if I have to.....SERIOUSLY!!

Oh.....you are too sweet to be concerned about hubby. Our circumstances are SO dire aside from health (cancer and RSD are almost just a drop in the bucket!!)......he lost his job a year ago and hasn't been able to find work in this economy, I cannot work due to RSD, we are about to lose everything (well....house and cars.....we get to keep all our stuff.....we just have nowhere to put it all!!), and I can't even afford treatment for my RSD anymore. That is part of why I'm asking these med questions. I can't afford to do trial and error at $20 a RX. I have a TON of Zanaflex and Flexeril......I hate for it to go to waste and have to buy a new med.....but I need ONE that will actually work. Thank you for your well wishes!! We just try to laugh as much as we can. I really appreciate this information. I may have a new mission in my immediate life!!!!

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

OMG! I am so sorry that just makes me mad,,,,

there is so many story's that need to be told, and when you think you got it bad, just look what someone else is going though
I hope you have some place to go?

Peace
:grouphug:

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!!! :eek:

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!!!

Here are cites for the Flexeril

Found at this link: http://www.rxlist.com/flexeril-drug.htm

This link also say you really shouldn't take it for more than 3 weeks. http://www.medicinenet.com/cyclobenz...al/article.htm

Found here: http://www.pdrhealth.com/drugs/rx/rx...&contentId=241

Those are all the ones I've found. I also have a PDR book here and it says the same thing in it too.

Hugs,

Karen

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!:hug: 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!

Pauliana,
Hey girl, Talk about a space cadet...I totally forgot you lived here before. I thought I had it all together:cool: 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????:confused: