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.