I have tried the usual pain meds (Loratab, Vicidian, ect.) and I had bad reactions to them (nightmares, bugs crawling on my skin and breathing difficulties). My Doc has switched me to Talwin NX and I am able to tolerate it and it seems to takes the edge off the pain most of the time.

I don't like taking it unless I just scream with pain. I guess I am lucky because I have a very high pain tolerance so I am able to just redirect my thoughts by keeping my mind and hands busy. I have several knitting projects I work on as well as playing Scrabble on my DS. I know it sounds crazy for a 42 yr old to play with a Nitendo DS but it works for me.

You might want to research this particular med to see if it might be an option. Hope this helps. Good luck to you!

AJ

I am unable to have a SCS as a doctor tried an external nerve stimulator and it made my RSD worse... EXTREMELY WORSE!!! This was supposed to block pain signals to my brain as an SCS does but it didn't work.... My pain went from a 3 to a 10+ in less than 45 minutes with me wanting to cut my leg off. It also caused immediate spread from my foot up my leg to my torso in this short amount of time. After this I was and am still afraid to find out what the SCS might do to me... and the doctors agree.. this is not worth the risk.

As far as a pain pump... doctors have told me that this is not an option at this time as the medicines that are put into these are narcotic based meds.

I checked TALWIN NX... unfortunately it too is a narcotic analgesic... thank you for giving me the name of this medicine as I had never heard of it...

I havn't given up and I keep looking for new medicines that are not narcotic or opiod pain killers. I keep looking for anything to ease this pain... I have re-written what a 10 pain level means many MANY times.

I do take Lyrica, Cymbalta, Baclofen, Seroquel, Frova, and Xanax.... but these really do very little to ease the RSD pain.

I sincerely appreciate all of you!!! You are all wonderful!!!!

Abbie

Narcotics are never going to help you with RSD pain. And I have had experience with the same methodone experience you describe... you just don't care as much about it, but it is still there. But living like a zombie is no way to live. You need to try different anti-seizure drugs - that will actually help the nerve pain. The one the worked best for me was zonegran. But it might take a while to find the right one and the right dose. If your RSD is very bad, you will need to work up slowly to a large anti-seisure med dose. Try to find one that doesn't have a ton of side effects, then go up on the dose gradually until it has the right effect. Make sure you are also seeing the right type of doctor that knows about RSD... a "pain specialist" they are usually called.

And you made the right call on the stimulator, although it sounds like just really bad programming.

Good luck.

Hi all!
I am an addict and hav been for, I believe, all my life and I loved to abuse pain meds. I am in recovery right now and I hav had this addiction for yrs b4 the RSD diagnosis. I only take lyrica and muscle relaxers currently and hope to never need pain killers.
I used to abuse pain meds for emotional pain and now actually need to take them for real pain and i can't!
I was diagnosed last fall and my pain is usually around a 5.
I don'tt even want to think about what will happen wen the pain worstens...
Sarah

What does your PM doc say? My understanding is that when you use narcotics for RSD pain your body is processing them in a different way than it does when you take them to get high. I'm in no way an expert, though.

Congrats on beating your addiction. What an awesome accomplishment. And perhaps you shouldn't think about what is going to happen when the pain worsens - treat this like you did your recovery - ONE DAY AT A TIME.

XOXOXO Sandy

You have received excellent advice. I am sorry that you have entered the RSD/CRPS zone.

You will feel very welcome here. I believe that a positive attitude helps from the onset of RSD. Take each day at a time, and educate yourself with the informative posts in the forum.

Please don't hesitate to reach out should you want to chat. I am Dew, and it is nice to meet you

I have actually tried the no pain medication route. It did not work for me. My pain was out of control. I was down the entire time. It was a very bad experience. In the last 5 monthes I have tried several types of pain meds & in the last 3 years since i was diagnosed. My doctor finally came to the conclusion the only pain medications that I tolerate are the synthetics like fentanyl & dilaudid. The others either dont work or I have bad side effects. We determined years ago my liver does not process medications like a normal person. There are many medications I have tried over the years I have not been able to take. But the thing is sometimes you just have to figure out what works for you & it can be a painful trial & error process. The last 5 monthes for me have been hell. A lot of people swear by Methadone & I was excited to try it thinking it would work well for me. I might as well have been eating M & M's for all the good it did. Just because I am on pain meds I am not a zombie. I will admit they can make me tired. But not every day is bad & it depends how my pain level is & how I feel. There are other factors involoved. Some of the other meds I take can also cause fatigue. Its such a personal choice. Like I said I tried to go without narcotics just to see if they were really making any difference & found out the hard way just how much of a difference they were making. But I think it was worth knowing. Hope everyone has a low pain day.
Hugs, Denny

When I was originally diagnosed (Oct 08), I was started on Neurontin, then Lyrica, plus MSContin and MSIR for breakthrough. However, my big priority was to return to work. I am a nurse, so working and being on any narcotic pain medication is a no-no. Because of this, I shook the morphine cold turkey after a couple of months for several reasons. My mother was afraid that I was addicted or would be (I am honest enough to say that I don't think I was, and while I did withdraw I do not crave any more, but it's hard to judge 'cause I certainly wasn't "myself"). Also, I felt like I was losing my life. I didn't want to eat, shower, get dressed, leave the house, and lost interest in my family. I just slept and breathed. I had been on antidepressants beforehand, but increased the dosage. So, I went off the morphine. I am still on the Lyrica and use a TENS unit for work. I also take Klonopin at night only to get me to sleep when that nasty sensation of the sheets against my leg keeps me awake. The TENS unit is not working as I had hoped, so there is still pain. My doc wants me to stop using it and get a SCS because the stimulation on my skin is causing bleeding rashes and electrical burns due to having to use it at such a high voltage to get relief. I think that this is the way that I will go (luckily I work in neurosurgery, so I have access to people who are understanding and that I trust) once I am permitted by my employer to take a leave to get it. I'm scared to death, but I have to do something and I cannot go back to more pills. And, yes, sometimes it just plain hurts...some days all you can hope for is to get one foot in front of the other and keep at it. I think we all have days like that whether pain meds are involved or not.