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 09-24-2007, 10:41 PM #11
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Hey,
Just wanted to let you know that the spasms in your hands are due to RSD. I wish I could tell you what would make it better but I can't even get rid of this myself. I'm sorry you are going thru this....I know the pain it causes.

Hope you get to feeling better soon.
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Old 09-26-2007, 01:05 AM #12
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My daughter has RSD in her left leg and right arm
The spasms in the leg started off as a very slight "twitching" just behind the ankle bone and eventually became so strong that they contributed somewhat to her foot rotating outwards and are now fully visible and are seen through a violent shaking and trembling in her toes, especially the big one which shoots up and down then twitches violently - she calls it her party trick, but really gets frustrated by people watching it. They come every five minutes or so and last for a couple of minutes each time
Recently she has also had spasms in her thigh too, though nowhere near as frequently - usually a couple of times a day
The arm is quite a recent injury (six weeks or so) but you can still feel slight spasms in her clenched fist and trying to straighten the fingers is a nightmare as you just start to get some movement and then the spasm kicks in an undoes all of the hard work - hence the splinting in theatre. Needless to say the spasms are so strong that they have managed to partially find a way around the splint and the PM Team are having to have a rethink
Alison is currently taking baclofen, tramadol and lyrica but I would be grateful if someone could advise of anything else that may hekp
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Old 09-26-2007, 01:58 AM #13
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I get horrible muscle spasms, from the hips down. If it weren't for Baclofen and morphine, I don't think I could get through the day!

I also take hot soaky baths. I use a "medicated" bath oil for sore muscles that contains eucalyptus and other stuff too numerous to mention here. Back before the baclofen, I would take up to three a day, the spasms were so bad.

Massages help a lot too... too bad Michael only has one good arm <sigh>. He tries, but it doesn't help as much as I'd like. I used to get professional massages done, but I can't afford it anymore. My ins. doesn't even pay for the PT to do massages!

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Old 09-26-2007, 02:27 AM #14
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I get these spasm too!!!

Dang that is scary what ya'all are writing about them. It seems the ones im getting have been getting progressively worse, and that is a bit worriesome after reading this thread lol.

I was wondering if any of you have tried a soak in a hot tub?

Been thinking of getting a small 2 passenger tub so that I could hop in it anytime I needed to, and not have to wait for the fill up.
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Old 09-26-2007, 09:13 AM #15
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Wow... though terrible for all... it sure is nice to know that I'm not completely crazy or alone with my symptoms.

I have multiple muscle spasms all day, every day. I have them so bad that I have nearly knocked myself out a couple of times...yep, arm spasmed and I hit myself right in the face. Legs will jerk around and my face will contort to some of the funniest expressions I've ever seen. Feet curl up so tight that I've nearly had my toes touching my heals. Hands curl up so tight that I've had my knuckles laying on the inside of my arm many times.

I also take Baclofen in attempt to help control them... somedays I only have to take a small dosage (40mg)... other days I have to max it out (80mg).


Thank you all for sharing,
Hugs to all,
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Old 09-27-2007, 09:12 AM #16
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Hi there
I suffer from RSD in my right arm and left leg.
When you place your hand on the top of my arm affected by RSD, you can feel a little fluttering. This is not visible at the moment.
I have musclw spasm's in my leg too, these are visible. My spasm's hurt like hell, you can always tell when my leg is going to go into spasm because my big too shoots up, the pain gets worse and then my toes go down into spam.
My PM doctor always watches my leg when it is in spasm. I find it embarrassing. People on the stree, in shops etc also stare at it. I think it's because it is so unusual.
Wishing you well.
Alison
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Old 09-27-2007, 11:09 AM #17
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Dear Ali

I have the same issue! I hate being stared at but when the jerks etc kick in you feel a total idiot! I get a mix of spasms - I get the twisting deformity spasms, the shaking spasms and the jerks.. all of which make me feel like a total idiot if I am out and it starts happening. Some of my friends now play along by pretending to dribble etc so that I can feel "normal" (ok it's more embarrasing, but at least people are joking about it instead of being scared of it). I hate the really painful ones which make you yell out suddenly - always feel such a wimp after those!

Love

Frogga xxxx
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