I've suffered from RSD for over 7 years. I am sorry to tell you physicians who are knowledgeable about RSD are far & few. Many "claim" to know about the condition - but they don't.
ONE BIG TIP I CAN TELL YOU & PLEASE BELIEVE IT: DOCTORS WILL LOOK YOU IN THE EYE AND SAY "NARCOTICS/OPIATES DO NOT WORK ON NERVE PAIN" That is WRONG! I could not function at all in the world without Morphine Extended Release. I use the extended release because I am NOT a drug addict wanting a quick rush from an Immediate Release Compound. I do have a prescription for Morphine Sulfate Immediate Release, but that is used only for Breakthrough pain. I hate to sound so gloomy, but it is a tough road ahead of you if you have only had 6 months of this. My best advice - find a physician who is willing to LISTEN TO WHAT YOU THINK WORKS BEST (after trial Rxs) AND STICK TO WHAT YOU KNOW HELPS. DO NOT LET THEM SHAME YOU INTO THINKING YOU ARE A DRUG ABUSER FOR WANTING A NARCOTIC TO HELP YOU LIVE A SOMEWHAT NORMAL LIFE STYLE.
GOOD LUCK!

I am so pleased to have found this forum. I was diagnosed by my GP after visiting 2 other GP's in the Practice and an A & E Dr. So 3 months after first seeking help, I'm eventually on my way with a brilliant GP who has a great sense of humour but cares about getting me the best treatment.

The CRPS started in left toes and foot and has now spread to the left knee. I went today and told the GP that my knee was now painful after walking leisurely for an hour the other day, she advised that it might just be that the CRPS spreading unfortunately. She referred me for an Xray straight away and booked me an appointment to see a consultant in a private hospital through the NHS, I had an appointment for 8 weeks and asked if I should cancel it and she said no as I might want to get a second opinion.

I had never heard of the syndrome before the diagosis and was actually quite pleased once the GP told me what I had as I had started thinking that it was all in my head! Now that I have read more about it, I am starting to worry. Not a lot of people know about it and I am really glad to have found fellow RSD/ CRPSers, thank you all,

Gerrimondo

This is so true. I do have to say that I have been on Morphine ER for years. Unfortunately, after many years I had to go off it because the nausea & constipation it caused was too severe. They switched me to OPana ER & for a year it worked well but then it quit working because my body had adapted to it. I am now back on Morphine ER but after only 2 weeks I am experiencing the same problems. I take Norco & Soma for breakthrough pain & I take them together. I found that the combination of the pain killer (Norco) & the muscle relaxer (Soma) is the best remedy. They work on both our main problems which is the pain & the constant muscle spasms from the nerve over-firing, which also cause the pain. The new doctor I have (after having to move to WA because my WC comp is 4 years + in with no end in sight & I couldn't afford to live on my own after not working for all this time)is horrible & unknowledgable about CRPS/RSD & has written down that he sees no signs & I am a chronic narcotics user. He has admitted that he knows little about the condition, knows no doctor to send me to & refuses to contact my former specialists in L.A. who had treated me for 4 years before I had to move. This is why I had to go back to Morphine, because he told me he doesn't know what to prescribe & I only could hope that going back to a drug that I used to have luck with. I am searching for doctors in Seattle now but it also means that I will have to drive 3 + hours over 2 mountian passes covered in harrowing snow & black ice once a month to get to them & god forbid I have a horrible flare & need a local doctor fast.
I guess I have got carried away ranting, but the bottom line was that for me, the short term opiates have worked best & I am in so much pain that I don't feel any rush, just relief. The long acting help alot, but also cause me other problems. What ever works for us is what we should be prescribed & I HAVE NEVER BEEN CALLED AN ADDICT UNTIL I MOVED HERE & HAD A DOCTOR WHO KNOWS NOTHING ABOUT IT & REFUSES TO LEARN. HE CALLED ME AN ADDICT IN MY RECORDS, NOT TO MY FACE OF COURSE, BUT ON PAPER. The fact that he has access to 4 + years of records by specialists in the field & reports from the 14 doctors whom have all diagnosed me with RSD & still had the nerve to call me an addict while admitting he doesn't know about the condition is deplorable, yet all too common for RSD patients. Sorry again for the long rant...I am just so furious with this kind of treatment & lack thereof that I had to get it out!

Hi everyone! I understand your pain as I have had CRPS type II for 8 years now. I have a pain pump implant with Dilaudid in it. I was on morphine since Nov. 2002 up until a couple weeks ago. My legs were red, burning and swollen badly with edema. It turns out for six months I have had an allergic reaction to the morphine. I thought I was having heart problems and it was causing a flare up that wouldn't quit. I couldn't afford to go see a doctor or pay for test. Then I started having minor chest pains so my brother took me to the hospital. The ER ran tests and took blood. The ER doc said he couldn't explain the edema because he couldn't find anything wrong with my heart. I felt like a fool. I went 2 weeks ago to have my pump refilled and showed the pain doc my legs and he said I was allergic to morphine. It turns out you can form a allergy to anything at anytime regardless of how long you been on it. After the Dilaudid was put in my pump my flare up became worse and then morphine withdrawals hit me. I'm finally doing better in general but tonight at 3am I sit here with my legs on fire and sit at my computer writing this. I just joined recently to this forum and more of my whole story can be found on my "about me" page.

I hate that any of us have to go through this. I lost my wife of 11 years to divorce along with everything else that I worked for my entire life because of this demon. I have good days and bad (like all of you). Today happens to be a bad one.
If anyone knows of a more active rsd forum please pm me with the url.
If you need someone to talk to (even if it's just to complain about the pain) feel free to email me or contact me on im. Thanks for listening.

Where do you live in western Canada? I'm in the same situation and location. It's hard to keep the hope going.

Shari what part of Western Canada are you in? I am also in Western Canada-Castlegar BC.

Please find a person who is experienced w treatment of disorder, you may have to travel to a big city. MDs who are not trained with CRPS, may do more harm than good, even with the best of intentions.
You found this site, use the internet to find a pain management specialist that you can access, who has treated folks with CRPS. Especially, early on,
as you want to minimize possibility of spreading!!

New to all of this
Don't know the 'rules' for posting yet, so bear with me.
Bought 4 books after receiving diagnosis 6 weeks ago. Not what I'm looking for.
What I'm looking for is some statistics, example:
What are the chances my RSD will advance/stabilize/remit? Does everyone eventually wind up in "stage 3"?
At age 62, I was hoping that my chances of keeping my right leg/ankle "as is" (not much worse) is at least 50-50? I can walk without a cane and find that wearing compression stockings underneath my socks prevents excessive swelling at the end of each work day. My right ankle is still 40% bigger than my left, and my whole lower leg and foot is reddish-purple every morning when I get out of the shower.....but otherwise, life's pretty good (so far).

Which thread should I read first?

Thanks!

Sorry hun I live in Kentucky. No support here either. I have had it almost 4 years and still drs look and say what does that stand for. Feeling your pain.

I am new here. Have been diagnosed 3 1/2 years. Kinda tired of doctors hospitals and being in bed. Need all new friends now none of the well ones come around or call anymore. Cheers