Hi Empty,

RSD pain was first 'discovered' and dx'd during the Civil War because of the burning nerve pain complained about by........amputees !

Like amputees with phantom limb pain, our nerves are misfiring and not reading the body's signals correctly.

Performing surgery to deliberatey cut more nerves in the hope it will fix the nervous system in someone that we already know has a screwed up nervous system seems foolhardy, at best.

You have my sympathies.......I can't imagine how much worse it is to deal with RSD as a young adult. Although at 45, I'm not quite dead yet , I am grateful that I got to enjoy high school and sports, college and partying, being physically active in my career of nursing, falling in love, getting married, and having kids..before my world fell apart with RSD.

It seems like fighting for Ketamine might be a good place to start.

I too am sorry you have to deal with all of this pain at such a young age and face the emotional details that go along with it. But I have to share with you because I too most recently faced this dilema. First and foremost, you are young and still in the time frame of complete remission. I nearly severed my foot off of my leg nine years ago, I have no motor units functioning in this foot, causalgia, total posttrauma and disfigured, it serves no purpose and creates alot of pain in my world. I have had nine surgeries to repair all of the damaged areas but still have the pain. About six months ago my doctors and I discussed amputation and I even went to counseling on prosthetics. At this time, I have decided to not take that road. The risks are high and the stats are low. I talked to one guy who was 35, he said it was the best thing he ever did, but he had trauma to his leg no RSD. All others still had phantom pain and as the article states most people could not wear the prosthetics due to the rsd and/or phantom limb pain. I can get up in the morning or the middle of the night and walk on my foot, yes some days a little rougher than others but it does get me to where I am going. If I were to take the risk and amputate and still have pain I think emotionally, that would be more than I could bear. So...I say keep what you have, you are young and resilient, many people especially young do have spontaneous remission. And what is normal, everybody walks different, maybe you are unique and have character. Build on the positives, try not to get to washed up in the negative forces of this illness. Denial works great for me, I have never once believed that I have this illness, I just do the best I can with what I have, I really don't care what they call it, its what I believe that matters. Find a way that works for you to focus on what you can do and build on what you have and each day strive to move forward. Best of luck!

At 44 years, diagnosed 2 yrs ago, I too have tried to see the positive in that I have travelled, fallen in love and had a rewarding career. . .you really do just have to acknowledge the positives.
Empty, I agree with Finz. . . please don't do it!!! I have often thought about it myself except that I have this monster in both of my legs, so amputation would see me perched on a skateboard using my arms for motion!!! Besides, I am way too much of a shoe addict not to have feet!!
Since most RSD cases are a direct result of some form of trauma, the body might not acknowledge the amputation as a helpful medical procedure but rather another trauma, which could cause it to spread rapidly. I too have heard of the 'phantom pain.'
In my opinion, the risk is too high. . .
take care,

Kelly

I am a 24 year old male who Struggled with RSD for 2 years. I fractured my ankle in 2008 which turned into RSD not long after and from there they tried every pain management technique available, lumbar blocks, Spinal cord stimulator trial no response to any of those. My surgeon said he would amputate if id like I jumped right on that. In the state of mind i was in I was ready to do anything I could to relieve the pain. I had my right leg amputated below the knee january 2010. I did have substantioal relief from the operation and Have no RSD that I know of. But now i struggle with the dependancy issues of the opiates. I checked in on my own 2 months after the amputation to get off the opiates and its not been easy. I attend support groups weekly. I also deal with alot of depression from the amputation which still in physco therapy for. All and all my life is slowly getting back to normal. I am back in school finishing what i had started in becoming a probation officer and have 3 wonderful children who love daddys metal leg. Its a long process adapting to the prosthetic but one you get a great fit you will be unstoppable. Just thought id share this information. Also i do have days where i still think i have my leg on those days i usually end up on the floor because i fell. IT will happen trust me.

I just wanted to say Im sorry youre in that much pain. I remember not long ago my husband was having a really bad night and he was crying that he wished he could just cut his leg off. He at one time asked his PM dr about that and he told him that even if they amputed his leg, the rsd would most likely move to another part of his body and at very least to the site of amputation. That he would never recommend it for rsd or consider it.

Hang in there, I know it must be incredibly hard for you to deal with this crap at such a young age *hugs*