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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


Hand spasms/cramps
Jan 1, 2007
Hey everyone. for the people who have rsd in there hands. do any of you get hand spams or cramps. my hand will start twitching and then without notice just kind of clinch up. making a really tight fist. it takes awhile for it to stop. usually someone will have to massage my hand and fingers trying to get the muscles and tendons to relax. it hardly works but its worth a shot. because the only other way is to grab my fingers and force them to straighten. which as you can imagine puts me into severe severe pain. does anyone else have this problem and it so what do you do about it?
Amber
I've never had my hands clench up on me but my arms and hands and legs used to spasm and twitch really bad. I told my pm and I was put on baclofen. It is awesome! It cuts way back on spasms and the twitching as well so even when it does happen it's not bad at all and instead of happening a few times a day it happens a couple of times a month. Ask your doc about it because it surely is a lifesaver!

I read your scs thread and I feel I need to make one comment about something you said. RSD can spread anywhere, not just to your limbs. It doesn't mean it will happen to you but I wanted you to know RSD isn't confined to just the limbs. It can be anywhere in your body even the internal organs. From what I've learned in all my research they say that they percentage of those who have internal RSD are low. I take any statistics with a grain of salt really because no one has any hard statistics on how many people just in the US have RSD or how it has spread and affected them. The few surveys I've seen or comments on numbers put it at anywhere from 100,000 people to 7 million people with RSD in the US. That's a big range but I'm willing to bet it's a few million myself.

I hope you can fix the problems with your scs though and wish you good luck.

Gentle Hugs,
Karen
Thanks. when i told my pm doctor about the cramps/spasms she put me on zanaflex. and its helped a little but ill ask her about the baclofen and see if she thinks that might help me more.
thanks for reading scs thread. yeah it was more of a question about the rsd in extremities only. i wasnt sure thats just what i read a few places while trying to do research. so do you think it could be possibly spreading to my back? cuz with the rsd in my wrist it doesnt burn most of the time i just have severe stabbing, shooting and achy pain. and same in my back it doesnt burn or anything but its just a stabbing,shooting,achy pain. i wasnt sure about heaving rsd in your torso but i have never heard that you can have it in your organs. wow. thanks for helping.
God be with you,
Amber
Hugs Amber.

It's possible it could be in your back. My test in that first year was, is this pain in another part of my body just going on and on. I waited 2 months and when it was still hurting just like the left leg, I knew it had spread there. It started for me in my left knee/lower leg, going up into the thigh and hip before going into the right foot and shooting up from there. I think it took about a week or maybe just a bit more before I realized that foot and leg was feeling as cold as my left. By 11 months it was in my arms but it was just the pain. It took like a year and a half or so before I saw any color changes or any temp change in my hands. When I asked a friend about it she told me that it can spread without the temp or color changes right away cause it happened to her. Anyway, it's been over 2 months since your surgery and with your back still hurting I would tend to lean toward it might be in your back. Someone I knew who got an SCS last year her back hurt for 2 or 3 weeks after surgery then had to have another surgery because of infection and lead replacement then another 2 or 3 weeks from that but it did stop hurting her. Your surgery site has long since healed so it shouldn't still be hurting. I don't think it's normal at all. From all the problems you're having as well it may be better for you to have it taken out completely. No use in having it if it's not going to help you all and take your pain down. I wish you weren't having to go through this at all. Talk to your doctor and then make the best decision for you now and in the long run. You know what's best, no one else does and don't let anyone talk you into doing what you don't want to do. I'll be thinking of you and waiting to hear how things go.

Hugs

Karen
Thanks for replaying so quickly. To be quite honest with you im scared. If this spreads, then i will be 18 years old with rsd in my arm and my back. Its crazy. But wow i couldnt imagine having it all over my body. i have had slight temperature and color changes but nothing like what has been described by others with rsd. i dont know if mines just not as bad as theres or what. Im praying that it hasnt spread to my back but im afraid that it might have. why lse would it hurt this long? and it doesnt feel like its going to stop anytime soon. but i was thinking about having it taken out completely but my mom isnt to sure and wants to wait to see if we can just get it fixed, since the trial stimulator worked. im so confused. ill let you know what he says after my apt tomorrow morning. thanks
Amber
*Hugs* It really hurts me to see such a young person dealing with this nasty thing. I guess that's the only think I'm actually grateful for is that it happened when I was 33 and I already had all my children and my party days were long over. My baby was 9 at the time so wasn't all dependent on me like kids are when they're younger.

I'll repeat myself from before because I think it bears repeating. Only you really know what's best for you and it's your body and your future. I've never had surgery since I got RSD but I think I'd be really scared too if I was in your situation. Just think about it carefully and do what you think is the right thing. I'm here for you anytime.

Hugs,
Karen
To answer your question-- I get muscle spasms/ tremors in my hand and arm. Sometimes my arm shakes uncontrollably and I can bearly use it. :( It will usually stop after a short while, though I have had it last 5 or so hours. Eek!

I am going to discuss it with my Dr., and see what she thinks. I know many of people with RSD are on muscle relaxers for this. Have you talked to your Dr. about it?
It not every day, but usually on days when I have had the worst nights, I get cramps in my wrist and my hand. My doctor put me on quinine for it. I don't take it unless I need it, because it makes me more tired (without sleep of course) and causes nausea. Otherwise my arm is useless and I absolutely cannot work. I am in the same boat with you. I was diagnosed with RSD at age 22, I'm 26 now.
[QUOTE=GalenaFaolan;2719691]I've never had my hands clench up on me but my arms and hands and legs used to spasm and twitch really bad. I told my pm and I was put on baclofen. It is awesome! It cuts way back on spasms and the twitching as well so even when it does happen it's not bad at all and instead of happening a few times a day it happens a couple of times a month. Ask your doc about it because it surely is a lifesaver!

I read your scs thread and I feel I need to make one comment about something you said. RSD can spread anywhere, not just to your limbs. It doesn't mean it will happen to you but I wanted you to know RSD isn't confined to just the limbs. It can be anywhere in your body even the internal organs. From what I've learned in all my research they say that they percentage of those who have internal RSD are low. I take any statistics with a grain of salt really because no one has any hard statistics on how many people just in the US have RSD or how it has spread and affected them. The few surveys I've seen or comments on numbers put it at anywhere from 100,000 people to 7 million people with RSD in the US. That's a big range but I'm willing to bet it's a few million myself.

I hope you can fix the problems with your scs though and wish you good luck.

Gentle Hugs,
Karen[/QUOTE]
Yes, I have RSD and my hand cramps up really bad. Have to pull my fingers out. It looks like my hand is crippled. jacar
Hey yall,
I get muscle spasms in my right foot ( the injured one) and up my leg....
There are so many problems associated with RSD :dizzy:
I said in about 3 posts back i was going to lay down........well i know yall can relate when i say......i also made it there, but the pain was to bad to lay down. Gosh, if i do lay down and finally sleep when i get up im so dang stiff, it takes hours to loosen up and sometime i cant.
I think its because if i lay down for 3 hours, i wake up at least 6 times (MOL) in that time span......i never have a chance to get into deep sleep to relax the body and muscles.
I sure wish water took this burning, stinging, hot poker stabs 'out'. :blob_fire

Later yall,
CAT :wave:
Kitcat,
It is Jaxobean again. Sorry I just joined today and am very happy to talk to people going through the same thing. Have you tried Amitriptylene (Nortriptylene or Diciprymene) They worked for me. Lyrica also helped for a while. Dr. Anne Oaklander put me on those from the Mass. General Hospital in Boston. I had great luck with Amitriptylene which I am not sure if they still prescribe but the two later drugs are the newer ones. Those made me sick but that is very rare. You might want to ask your doctor if those would be worth a try...good luck
Hi,ihave Rsd In Both My Hands, I Get Spasms Up And Down My Arms.
Sometimes I Cant Grab Things And Other Times My Fingers Lock.
I Cant Do Normal Things Like Hold A Book Toread,wash Dishes,blow Dry My Hair,i Cant Turn My Wrist To Bring Pills To My Mouth.
Cant Lean Or Put Pressure On My Hands.
And Many Other Things Like Typing.
I Will Be Seeing A Psych To Determine If I Am Nuts .i No Im Depressed Because I Have Been Home For 3months And I Do Nothing All Day
Andto Top It Off I Think My Co Workers Must Think Im A Leaper Because Not One Of Them Has Called To See If Im Dead Or Alive. Is This Common Practice In The Workplace?? To Abandon Your Friends??
Hey everyone,
You know what I think we have a better chance of finding things that help then the doctors we go to. If pain was not involved it would be different. There is such a stigma that goes with this because pain pills are involved. Do you think that the doctor's we go to would suffer with this pain. I don' t. I was lucky in that in 1997 my primary doctor who was also a neighbor had a wife who had it in her knees. He knew exactly what it was and sent me to a rehabilitation hospital. As soon as he saw that the PT was aggravating it he pulled me out. Also a surgeon I had pulled me out and never put me in again after 2 other surgeries. DO NOT LET THEM MAKE IT WORSE...When I was on wc the sheriff's dept. took me to court 3x to fight me and I stood my ground. I am a people pleaser and allowed a nurse to accompany me to my doctor's appointment. She went ahead of me to the doctor and told the doctor that the dept. had created a position for me and to clear me. I was so upset I called her ( the nurse that came with me) and told her that I was not ready to go back to work and that the pain was to severe. Not to mention all of the drugs I was on at the time. I could barely function at home let alone dealing with inmates who constently are trying to manipulate you. So anyway I refused and she said to me I am sorry if a doctor told me all I has to do was move my arm to feel better I would move it. That was the end of her. I never talked to her again. So my point is these people have no idea, and it is up to the patient to let the doctor's know regardless of how uncomfortable we feel about it. ok I will stop with the tyrant. Have a good night everyone-try anyway-Nikki





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