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...

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

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.

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

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.

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

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.

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.

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

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 **