Reflex Sympathetic Dystrophy Support Group

I had a nuerologist and a pain specialist and now just the pain specialist. As far as I know (and I could be wrong), a pain doctor is usually trained in anesthesia first. They specialize in pain only. They are trained to do sympathetic nerve blocks, other kinds blocks, trigger point injections and prescribe controlled substances more readily than other doctors can if needed. They can work at the hospital or outpatient clinic as well as at the office. They can do surgeries such as implant the dorsal column stimulator or fix certain problems of the spine. My suggestion is to contact the American Pain Foundation to get a suggestion for a great pain doctor in your area.

Hi from NZ. I was diagnoesd with RSD after surgery,this was caused I believe by inactivity of the joint while injured. Tegretol is an older mood stabilizer or can be used as a muscle relaxent. I have found DHC Continus (codeine ) effective. Pain dictates unfortunately and hopefully it doesn't spread to other parts of your body. With physical excercises pace yourself doing to much can end up with days of extra intense pain.I find being under a pain service is good because they work in a multidisciplinary team eg physio,pain specialist and pyschologist. I have learnt set yourself boundries I tried to fight this thing trying to be normal but now know to set new targets to getting better and not being frustrated with myself

I was ignored also, but now I have a really good pain specialist and he is wonderful. Where are you and maybe we can help you find a good one(PS) near you. I have been on Lyrica for about 2 years and I have Percocet for pain, going to try a Spinal Cord Stimulator, only because having Lumbar Sympathetic Blocks helped, but I don't want to be having shots the rest of my life. You need to find what works best for you, but don't give up, we are all fighting with you for a cure, and being immobile with the affected area will cause more problems. KEEP MOVING AT YOUR PACE!!!!

I have tried both the pain managment specialist put me on 15 kinds of pain meds, way too many drugs. I see a neurologist now and I am now on two meds, I still have severe flare ups of pain but the meds seem to keep my pain incontrol a little more

I think it depends on the individual Dr. The first neurologist I saw was a moron. Didn't get anywhere with him. My primary care Dr. was the first one who actually diagnosed me with rsd. Since then I've found a great pain management Dr. but she still doesn't seem to knowledgeable about the disease. I guess not many people are. I have an appointment to see a neurologist who specializes in rsd. Can't wait to see him but the earliest I could get an appointment is next December. Bummer.

I have been to every kind of doctor out there. Physical Therapy, orthopeddics, neurologists, and 2 different pain specialists at two different places. I have a wonderful neurologist that is very knowledgeable and I also now have had a great pain management doctor who is very knowledgeable specifically about RSD. He is an anesthesiologist first, then specialized in pain management under the foremost authority in the country at Johns Hopkins Med. Center. I have been treated by him only for the last 5 1/2 years abd i have had RSD type 2 in two different extremities. I have been most successful with my pain mngmt. doctor and I am happy to say I am no longer on any narcotic pain meds., although I am on other combinations of safer meds. Between excercise, the meds, trigger point injections and trying to pace myself and learn my limitations and accept that I am doing okay. I can put myself in extreme pain by over doing it, and air and touch can still be very painful sometimes so I try to avoid getting myself into that position. My neurologist was very instrumental in my diagnosis and I have been able to pick his brain in the past, but I also have not seen him in probably 4 years now. I think it really depends on how severe your symptoms are and how acute your original injury is. Good luck it sounds like we all have been in the same boat trying to find what works best today, because tomorrow it could be different...better or worse!

Funny that this topic has come up. I just saw my regular doctor to talk about my on-going condition: pain in legs, burning pain in feet which feels like I am walking on glass, pain has moved up to my hip, the tingling in my toes, how both knees are in constant pain, that I am losing my focus and mental strength at work due to the constant pain, I come home totally exhausted and my drug induced sleep is interrupted with me in pain--I dream I am in pain and it wakes me up. I also told him that my leg gave out last night and I fell to the floor. This is happening more and more often. I was hoping that I did not have to use my walker in the house--but, it looks like I will have to do just that. My quality of life is gone down hill and I know that I have to make concessions but life is not fun. He announced that he had made an appointment with a neurologist for me tomorrow afternoon in another city.

This is the not first neurologist that I have seen. I have also been to 7 different pain doctors in the past. Several of them wanted to insert the spinal pain stimulator in my back, but after doing research and finding out that in RSDS patients it works maybe in 50% of the cases and then after the first year that rate goes down to 27% and the third year it gets even less--I said NO. That is not strong enough evidence to get me to go through misery for something that has a less than 50% chance of working.

Hopefully, I will find out something new tomorrow. Will let you know how it turns out.

Take care,

Russell

the best doctor ive ever had was a neurologist who specialized in pain managment. he ran a pain clinic. i would recomend seeing both, that is what has worked the best for me. ive been on prescritption meds for 5 years for my rsd, and will probally always will be. stay strong... have you tried Lyrica? since ive been on it ive been able to come off narcotics all together. i wish you the best.
Peace and Love
~Rachel~