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-   -   Muscle spasms/ twitching (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/9621-muscle-spasms-twitching.html)

InHisHands 12-24-2006 10:36 AM

Muscle spasms/ twitching
 
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? :confused:

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.

artist 12-24-2006 12:21 PM

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!

InHisHands 12-24-2006 02:17 PM

Quote:

Originally Posted by artist (Post 52800)
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?

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. :eek:

moonstar 12-24-2006 03:13 PM

so sorry..
 
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

Annie Poo 12-25-2006 12:08 PM

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

fmichael 12-25-2006 06:00 PM

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.

Cake 12-26-2006 08:10 AM

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. :p

x Kate

LisaM 01-02-2007 10:13 AM

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 :)

Becca 01-02-2007 04:19 PM

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.

LisaM 01-03-2007 10:45 AM

Quote:

Originally Posted by Becca (Post 55102)
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!

Becca 01-03-2007 02:41 PM

Quote:

Originally Posted by LisaM (Post 55312)
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.

I am not sure, but I think I got RSD from a spider bite on my right ankle. I have it in my right ankle, my right wrist, and now possibly my left ankle. I am doing well in school, mainly because I have teachers and friends who are understanding and helpful. I sprained my left ankle about 3 1/2 weeks ago. It doesn't feel like RSD, but it is showing all regular signs of it (color changes, temperature changes, swelling). It is getting better quickly, and I hope to be off crutches within another week or so.

Thank you for the warm welcome!

InHisHands 01-03-2007 04:02 PM

Hello Becca!!
 
Quote:

Originally Posted by Becca (Post 55102)
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.


Nice to "meet" you, Becca. :welcome_sign: Wow, you've had RSD for a while...

Since you are around my age, I was wondering if I could ask you a few questions??


For how long did you have RSD before being diagnosed?

When you were first diagnosed, what did you do (what medication, PT, OT, etc)?

Were you told you would/ woudn't fully recover? What did the Doctors think of your case?

You mentioned you had a nerve block done. Did your Dr. try everything (s)he could before doing that? Was it sucessful? How much pain are you living with now? Is it getting better, worse or staying the same? Has it ever completely went away and then came back?

Sorry for so many questions. I hope you don't mind. I wanted to ask someone my age these questions to see what they did, and what they were told by their Dr.. Thanks! ;)

InHisHands 01-03-2007 04:35 PM

:Thanx: :Thanx: :Thanx:
Just wanted to thank everyone who responded to my post! It is nice to meet you all, too. :) This board/ everyone on it has been a help to me in my search for answers to the many questions RSD brings.

HeatherAnne 01-04-2007 09:39 PM

Quote:

Originally Posted by Vanessa (Post 52833)

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. :eek:


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 :D

InHisHands 01-06-2007 03:11 PM

Thank you, Heather!
 
Quote:

Originally Posted by HeatherAnne (Post 56020)
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 :D


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!:eek: ), 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!

babyboy39 07-07-2009 06:56 PM

Quote:

Originally Posted by InHisHands (Post 56626)
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!:eek: ), 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

aj822 07-07-2009 08:17 PM

Twitching
 
Hey Babyboy39,
FYI... I too have had this twitching going on in my RSD leg just like you. It just started a few weeks ago. It doesn't matter if I am resting or using my leg. Just random twitching in various areas of my leg. Nothing I do makes it stop. I thought it might be from the nerve blocks I've had lately. I guess it is just part of this RSD. :eek:


Quote:

Originally Posted by babyboy39 (Post 534239)
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


babyboy39 07-07-2009 08:34 PM

Quote:

Originally Posted by aj822 (Post 534264)
Hey Babyboy39,
FYI... I too have had this twitching going on in my RSD leg just like you. It just started a few weeks ago. It doesn't matter if I am resting or using my leg. Just random twitching in various areas of my leg. Nothing I do makes it stop. I thought it might be from the nerve blocks I've had lately. I guess it is just part of this RSD. :eek:

Hi AJ
Same thing, it doesn't matter if resting or not. The twitching just like the bolts burns deep bone aching spasms just comes and goes all day. It is mostly in my arm but definitely moves to my legs and the back of my shoulder blades. The scariest is when it twitches on left side of my chest. It startles me every time. I thought it might have been side effects from the drugs but I have been taking the same meds , and like my doctor informed it is just one more thing to deal with having RSD.
Thanks for responding, I feel a little better knowing I'm not alone.

Dubious 07-07-2009 10:45 PM

Yup, I get the twitching too. Seems to come in phases. When I get towards the end of the "high" of the stellate blocks, I start to get the spontaneous twitching of my deltoid. Uncontrollable and pronounced it is, doesn't hurt, just is totally independant of my control. I have had CRPS II since a shoulder surgery 1 1/2 yrs ago. Things are relatively better after 6 SGB (compared to the pre-SGB days), but no. 7 is around the corner.

I got the air and fan thing going too. Really a bummer b/c I LOVE air conditioning, or used to anyway! Can't really hold a cold can of soda or Starbucks coffee cup too long. Anyone else experience that?

So sorry to read your post but you are obviously in great company and amongst friends here!

Abbie 07-08-2009 12:58 AM

Quote:

Originally Posted by Dubious (Post 534321)
I got the air and fan thing going too. Really a bummer b/c I LOVE air conditioning, or used to anyway! Can't really hold a cold can of soda or Starbucks coffee cup too long. Anyone else experience that?


I too have the cold and hot thing.... all I can feel is PAIN!!! I haven't been able to tell if something is cold or hot in a long time.

I have to have the air running to keep the humidity down in the house...plus I can't handle the heat.... but it's a vicious circle.... I can't stand the cold either.... Most comfortable for me is above 72 but below 75. It's nearly impossible to keep between those temps.

Right now I have a small (6 inch) fan sitting on the floor running but not pointed at me.... it's just to keep the air in my bedroom from getting to hot over night.... if it get's too cold... it's just close enough to me so that I can reach and turn it off.

As far as muscle twitches... YEP have those too... Sometimes they are visable to the eye... other times they are deep against the bone. I think I have had every muscle in my body twitch, spasm, or cramp at one time or another. Most times they are painful, sometimes just annoying....but ALWAYS twitching, spasming, or cramping some where in my body. It's really weird when my face does this and it hurts too!!!!

I'm at the 5+ year mark... full body with facial, scalp, and internal organ involvement.

I sincerely wish you the best and pray for low to no pain days for everyone!!!
:hug:
Abbie

mssherrie 07-11-2009 06:36 PM

Quote:

Originally Posted by HeatherAnne (Post 56020)
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 :D

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...

fraher 07-12-2009 11:46 AM

thanks
 
hello everyone (((( hugs ))) to u all. i just want to say what a fantastic website this is.It helps so much when you need support and are in pain. so thank you . olga xx

Summertime 07-14-2009 08:36 AM

I have been getting some serious muscle twitching/spasms also. It is very weird to feel this. I pray for relief for all of us. No one should suffer like we do.

sue k 07-17-2009 03:36 PM

So sorry your having the spasms. They can be pretty bad at times. I've had rsd now for 10 yrs. At first my foot wouldcurl up so tight and my husband would have to try and get the foot straight again. Now i get them when i take off my brace at night. My doc raised my oxycontin dose from 20 mg. To 80 mgs and this has helped alot.not so happy about taking such a high dose, but it has done wonders for the spasms. I hope you can find something that workes for you.

Sue k

denise18 07-17-2009 10:11 PM

I've had rsd 21 yrs. the first 4 yrs. I jerked almost constantly, pt, surgery , drugs didn't help. massage therapist convinced me to see a chiropractor. He used a hand activator that gently tapped neck. Shockingly I quit for hours. i went every day, then every other day for couple of mnths, finally once a month. It was painful because my other muscles hurt because they had been out of alinment for yrs. but it worked,( I rarely jerk now, sometimes muscle spasms) also made colon and bladder problems.bearable.( don't know how that worked but loved it) my leg was also shorter and a little curled and it made it better too. he retired and i used massage and reflexology but finally saw reg chiro and he keeps me going. I saw him for 6 mths before i let him touch my neck.(if tapping made me quit jerking, popping might make me start back) but it didn't ( still grosses me out when he does it.) I've been seeing him for abt 6 yrs, he even massages neck and back so ins pays for it. I know Chiro isn't for everyone but it has been a miracle for me.

debbiehub 07-17-2009 10:16 PM

Hi
 
Hi there- From what I have heard and experienced, Baclofen works well for twitching and may help relax muscles...
When I get twitching in my face I take a baclofen and that does the trick- most people need to take it for a while before it works. Baclofen pumps are popular for people with MS to control spasms and twitching


Hope that helps

Debbie

ntr11023 09-24-2009 02:09 PM

Drugs Don't Work...
 
Mike,

Be careful with the drugs, especially the Ketamine. Another name for Ketamine is the Date Rape Drug. For all you who don't know what the Ketamine Treatment is, it's a treatment for RSD where they send you to Germany and put you in a drug-induced coma by OD'ing you on Ketamine. It's very dangerous, as it only has a 30-35% success rate. The percent of people who get cured by this and suffer no negative side affects is even lower. Some of the side affects that can accompany a success are blindness, loss of hearing, paralysis, loss of sensation, and an empty wallet. If it's not a success, you may be no different after you wake up, you could have any of the previously mentioned side affects, or you could be dead. Yes, there is a VERY high chance of death. I don't know the exact percentage, but it rivals the percent of success.

I will now tell you a story about a girl who had 5 bad experiences with Ketamine. There was once a girl who lived in the U.S. and had RSD. One day, she and her parents are told about the Ketamine treatment in Germany from their ingenious (puts a sarcastic twist on ingenious) doctor. Consequently, they decided to try it. So, they fly over to Germany and OD their only daughter on an illicit drug. She wakes up, but there's no change. They try again in a few months, and she can't hear. On try number 3, she goes blind. On try number 4, she becomes paralyzed. On try number 5, she dies and her parents go broke. So, to sum it up, this girl lived out her last few months doing this therapy and keeping her RSD while developing a lot of other horrible problems, and her parents end up losing their only child and all their money. This is a true story and there are many others like it.

So, I'm not saying it doesn't work, I'm just saying I think it's better to deal with RSD or find a safer alternative than to risk dying and/or suffering some of these horrible side affects. The doctor I go to offers a treatment that has no negative side affects. You can visit his website here:
**

I have had RSD all over my body for about 4 years now. It was caused by a Hepatitis A vaccine. The treatment my doctor offers may look strange at first, but give it some time. It has helped me out a lot.

firegirl 09-24-2009 04:59 PM

I find Soma (muscle relaxer) and Xanax to be very helpful with the spasms when it gets very violent & won't let up. I take these along with my pain meds.

Sandel 09-26-2009 11:43 AM

Hello
I have full body RSD and I get spasms all over daily, I noticed the spasm's when the RSD was first spreading into diffrent areas of my body.. the spasm's were like a precurser (literaly I cursed), back then my doctor's and wcb denied spread was possible. I take baclofen as well and it helps alot.

On another note to let you know, this post was actualy started a few years ago so always look at original posting dates if you are expecting an answer from the origional posters.

Vanessa (this post's origionator) has since gone into remission.
She was a very helpful suportive young woman around here and we miss her dearly, I hope she is making a wonderful healthy life for herself.

hugs and keep your hopes up,
Sandra

jeffreyramsey 12-14-2009 07:29 PM

I have a empty pump. I suffer from pain and spasms
 
Quote:

Originally Posted by InHisHands (Post 52768)
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? :confused:

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.

All I want for Christmas is to be pain and spasm Free. I get so bad that I cry yes a man that cries. my story **

Abbie 12-14-2009 10:57 PM

Hi Jeffrey and WELCOME to Neurotalk!!

You've found a great place with wonderful, caring people!!

I've been battling RSD for 5+ years and understand the crying!! I never imagined that pain like this existed... now almost every day I can redefine what a pain level of 10 means.

It's okay for a man to cry.... RSD just bites!!

Please feel free to roam around and join in anywhere!!!
Ask questions if you have them and help others where you can!

I hope to see you around the boards!!!
:hug:
Abbie

Kakimbo 12-15-2009 12:26 AM

Hello, and welcome! I, too suffer from constant spasms and muscle cramps (left buttock and both hamstrings). It seems that TONS of water, bananas and Potassium supplements and help. I take 40mg of Baclofen each day, and just started on CoQ10, which I buy at the local drug store. (My P.T. said that it helps your cells absorb oxygen, but it takes about three weeks to feel the benefits...) When I have a really bad set of spasms, I drink Odwella pomegranate juice. It's about $4.00 for a small bottle, but very much worth it. I have learned that lots of water and juice and lots of agonizing stretching seem to work the best. Good luck and welcome home!

Scottish Girl 12-15-2009 03:58 PM

Me too!
 
I've had RSD for around 5 years, started in my left arm/hand, but has recently spread to my ankle and foot on left side. I've had the twitching and jerking for a long time now, at first it was quite subtle but now I couldn't hide it if I tried. I think someone else mentioned hot cups of tea/coffee - I've burned myself on a few occasions. A few weeks ago my leg was twitching and my slipper actually came off and hit my husband. No bad thing maybe!

Vanessa, I wonder if your pain doctor has ever mentioned Vitamin C to you? I was recently advised to start taking this in addition to my other pain medication. So far I can't say I've noticed a difference in my pain, but it's early days yet.

I'm pretty new to Neurotalk, but I know there are lots of helpful and very knowledgeable people here for you to talk to.

Take care :)

amb97 12-15-2009 05:05 PM

Quote:

Originally Posted by InHisHands (Post 52833)


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. :eek:

If your insurance will cover it, ask your Dr. about Hyperbaric Oxygen Therapy. I have had RSD in my Rt. ankle/leg and my lower spine for almost 5 years now. In September, I did 20 HBOT treatments, and my sensitivity is SOOOOOO much better. The deep, stabbing pains never went away, but the color and temperature are almost normal and my skin can tolerate normal stimuli like shower spray, my covers, and even my pant legs. This is a BIG improvement for me. Since yours was caught so soon, you might get even better results than I did. Lots of people have gone into remission after HBOT. Good luck, and hope you get some relief soon. :)


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