Before I was diagnosed I cried and screamed in pain. My family Dr. cried with me and listened to me scream for a long time. He would talk to me for hours on the phone trying to calm me down and help me to get through what I was going through. I would say he told me at least a 1000 times to get in a hot tub and soak, lay on a heating pad and handed me every med out there for cronic pain that was made. He never ever doubted how much pain I was in even though I wasn't diagnosed. Thank God he didn't or I would have most likely killed myself. I'd say it was a good 2 years before I got the diagnoses of having the RSD. I think what is worse about having the RSD is having it and not getting a diagnoses because you can't get the help you need to calm the pain down without the diagnoses because of the narcotics that are used for the pain.


Once I was diagnosed I was scheduled for SGBlocks right away. I spent time in PT. Not the kind that makes you lift weights but myofasial release and lots of massages. I got triggerpoint injections of lidocaine, mericaine or ketamine. I tried every pain med out there and muscle relaxers and ended up on Methadone and lidocaine patches because I couldn't handle anything else.

A lot of people here are on Neurontin I noticed and it seems to help them. I couldn't take it. I honestly have a large popcorn tin full of meds that I couldn't handle for anything and threw away 3 times that.

I also am in councelling due to depression which was made a lot worse by the RSD. I honestly believe that councelling is a must for an RSDer. You go crazy from the pain and not being able to get it calmed down for so long. I think depression meds are a must also if you can take them, I can't but I wish I could.

To me RSD is like a war that we are fighting and we need a good army to help fight it because we can't do it ourselves.

Lidocaine patches are good also. A lot of us on here use them.

I swear by the blocks. I just believe they are a must for RSD. I also don't believe that there is a window of time like some Drs. say there is that the blocks work for a person. I saw different in me and 3 other people in this area. I know they don't work for everyone but I see so many people that got their pain down so much with them.

I believe also that you can get it to go into remission in some areas and some people are in 100% remission.

Also you have to find the right Drs. that will help you deal with it. You need a good PCP to refer you out if you need referrals and also help with meds when the PM Drs. won't. You need a good PM Dr. if you can find out. In our area we have so few good ones it's unreal. You need a good Anesteologist for the blocks if you don't have a pain management Dr. that does them. I think the Anesteologist are better with the blocks myself. I also think you need a good Physical Therapist that knows about RSD and also a good Councellor that knows about RSD or cronic pain.

This is just my point of view but when I read what some of these people go through on here I see that they are basically going down the same path. As I said it's sure a war you can't fight or win by yourself.

Ada