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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


Sandy,
No.. You don't need a prior blocks.. All you will need is to see a Cardiologist prior.. at least I did.. and the reason for that is obviously to make sure everything is ok with your heart because the lidocaine does lower your blood pressure.. During the infusion, you are hooked up to around the clock heart monitor.
Mine was a five day stay inpatient on the cardio floor.. It does make you very tired.. Its really very harmless.. You just sleep.. which is great to actually get a good night sleep in.. Your followed up with pill form after leaving the hospital.. It takes about three days after the hospital to start feeling normal.. but compare all that to day and nights of pain.. Its nothing.. The IV does not affect the RSD at all... You can actually feel the pain go away within hrs.. Its such a treat.. Some people need to go about every three months.. some once a yr. it all depends on the actual individual.. I only needed to go three times.. and Its been about 1 1/2 yrs now.. I don't even take the pills anymore... I have met so many other pts and made friends with them who have had this treatment.. This is why I want everyone to have the chance to try it..

Deb,
Yes its an IV drip.. Its really know big deal at all.. You don't even know its going in you.. Your just tired.. and painless. Its really worth thinking about.
The goal of this infusion is to get you off all those pain killers.. And it last so much longer.. Like I said to Sandy.. Something to really think about.. Its really worth it..
Michelle
Hi Michelle,
Wow -- Thanksgiving dinner sure was tasty!
I'm on regular Vicodin, but yesterday I requested the 7 1/2 Vicodin (I think it's called Narco, Norco???) -- Maybe they wouldn't do it because I'm not on the stronger type narcotics?
I would absolutely LOVE to experience the pain going away with the lidocaine infusion -- I had no idea it was a 5 day inpatient thing though -- Wow. I'd have to get a sub if I was going to miss 5 days of work -- I don't know how anyone works 8 hours a day -- I'm 15 hour contract so it's actually 1/3 time -- I work all day on Mondays and Wednesdays and holy cow -- When I get home, I gotta kick up my feet and stuff -- Pretty darn sore -- I think I'm getting pretty scared again about my RSD -- and I really don't like that fear.
Gotta run for now,
Deb
liznip..
Sorry its taken so long to answer your question.. I've been working four days a week now.. Not use to it after being out of work all these yrs.. lol
The lidocaine is a five day in patient infusion.. So your in for five days.. All you do is sleep.. Its nice.. Your pain free..
Each person is different who has this treatment. For me. my first one only lasted three months.. The second was about a yr.. and the third has been a while now.. I say may two yrs. and I am about 90% free of pain.. I can handle the 10%. It has totally improved my life. I am now back to work.. My mental state is so much better, which in return my RSD is better.. Any type of mental upset will flare you up.. I think it all just works together. Having chronic pain is horrible, then depression sets in.. So after they relieve the pain you mentally improve.. Going back to work was the best thing I ever did..
Thats why I just wish everyone could have the lidocaine treatment Like i have.. or even the ketamine.. They say that works even better..
Its so worth talking to your drs about it...
Good luck.
Michelle
Tigerlily11,
This treatment is so easy to go through.. I have RSD in all four extremities.. and this treatment is for all RSD.. doesn't matter when you have it..
All it is is an IV infusion..of lidocaine and they start you out slowly.. Each day the turn it up until you up to I think its 21 I can't remember.. Your start at about 8 depending on your weight.. In the mean time you still take all the meds you were prior..
Its a five day inpatient hospital stay.. You sleep the whole time.. Its really easy to go through.. probably easier then the blocks..
When you get home you take the pill form.. Which I only took for about two weeks.. I guess some people are different...
Prior to the treatment.. You will need a complete physical.. Blood work etc.. You have to see a cardiologist. Have an echo gram done of the heart.. The reason for this is, the lidocaine does lower you heart rate.. so while staying in the hospital you are on the cardio floor with heart monitors attached to you so you can be watched 24/7.. This is why you sleep so much on top of the meds. The low rate does that to you.. I've had several roommate who were also going through the same treatment.. The who floor of this hospital was going through these treatments.. So I meant so many pts down there while walking the halls. Yes you are able to walk around. Take showers.. etc. Eat normal.. The only reason why you stay in the hospital is to be monitored closely..
When you come home.. You tired for a few days. But PAIN FREE.. Its almost like you wake up waiting for it to happen and it doesn't.. Its really weird.. some pts do need several of these treatments cause the pain comes back within a couple months.. This is why I needed 3 of them.. After the third I seemed not to need it anymore.. Its almost like everything has reveresed and I am slowly getting better.. I still take my neurontin and Sometimes I take tylenol with cod at night.. Thats if I've had a long day at work.. I am sometimes on my feet for over 11 hrs a day with 1 hrs break..
This is why I want everyone to have this treatment.. I went from not walking to back to work working all those hrs.. I still can't believe it lol..
I hope this helps out some.. It is so worth the try if you are able to get it.. You have nothing to lose and everything to gain...
Thinking of you
Michelle
There have been so many good responses and replies I almost didn't post but I decided to go ahead and share my experiences with Ketamine, Lidocaine, and SCS. Yes, I have tried all three. I have had RSD for 4 years now, diagnosed for 3. My RSD started with a herniated disc at C4/C5. The C5 nerve root was entrapped and led to permanent nerve injury. In Nov. 2006 I had surgery to correct the disc but unfortunately I had already developed RSD from the injured nerve. In April of 2007 I went on short term disability from my job as a RN because the pain was so severe and I could not take medication at work because they had a no narcotic policy even though I was not providing direct patient care. At first the RSD just affected my right arm, shoulder and neck. In Aug. 2007 I had a Spinal Cord Stimulator placed and by Nov. I was off all medication and was able to go back to work. By Feb 2008 my stimulator was no longer helping with the pain and despite multiple trips to my surgeon and the manufacturer's rep for adjustments we could not get coverage where I needed it. My RSD also began to spread to my chest wall, left shoulder and arm and began affecting my heart rate. The end of Feb 2008 I was hospitalized to get my pain under control and fired from my job because I was put on narcotics again. (Nice of them, huh?) We tried stellateganglion blocks, turning off the SCS for a month then turning it back on. It still didn't help the pain. (Nor has it ever since that time). In Feb. 2009 I found a doc in Dallas that does Ketamine and Lidocaine infusions (they did them one after the other same day) and we set up an apt. (We live 120 miles away.) The first time we did a 3-day infusion. It worked for about a week and reduced my pain by 25%. The second one in March lasted about 6 weeks and I had about a 40% reduction in pain. Unfortunately the last one, in May, helped less than 24 hours and I had only a slight reduction in pain. The infusions are expensive and we used up most of our savings account. Our insurance paid a portion...doctors fees, monitoring equipment, ect. But they did not pay for the medication itself because it was considered "experimental" treatment. The treatments themselves make you feel extremely spacey. At the higher doses there were times I would black out and they would slow down or stop the infusion and I would come back out of it and be extremely confused. I knew who I was but that's about it. I didn't know where I was or what was happening or anything like that. Luckily it clears within 5-10 minutes and then it's over and you feel normal again and they are able to restart it at a lower rate. I'm glad I tried it and I enjoyed the six weeks that it did work. Same with the SCS. It gave me six month with less pain. But ultimately the choice is yours.

Cricket
Hi All,

Haven't been on in a long time the pain in right hand, arm, and shoulder make it to hard to type anymore. I have been having Ketamine infusions with Dr. Prager at UCLA I started the end of July with a 3 day and just had another single day infusion on Oct. 15. I also had the SCS implanted back in March but it stays off since it worked for a month and my RSD pain over rode sadly I now have RSD in my left hip and thigh from where the battery was placed it has been very depressing but I had to try something to get out of pain!! The 3 day infusion worked great I was at a lvl 10 all of the time and after the 3 days I went to a 0-1 for about 6 weeks before it started to creep back up and then my hip thigh started in. The 1 day was not as sucessful no pain relief so we are waiting to hear from Dr Prager what to do next!! Dr. Prager is a wonderful Dr. and very passionate about RSD and his goal is to give you back you life!! If anyone has any questions about Ketamine or Dr. Prager I would be happy to answer them:)!!!

Take Care
Shannon
Michelle, did you have the 5 or 10 day infusion. How often do you go back for booster (more infusions)? Did you have crps1 or 2? i have crps2. most articles i have read are on crps1 and ketamine infusions. it's nice that you don't need as many meds. did you stay on your meds at regular dose while having the infusions? i agree i am new to rsd and i am surprised i havent read more people trying ketamine. did you ever try the scs? thanks for your positive info! Donna





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