Originally Posted by Heather Rae

Hi everyone. My name is Heather. I have battled RSD in my left leg for 5 yrs following a severe patellar fracture which is now complicated by knee arthritis and scar tissue as well...meaning this gives me multiple types of pain. Complicated to treat to say the least and it is VERY stubborn pain...grrr! SEVERE pain spikes happen if I am not overtly careful with how much I try to do too. I have had the SCS for 16 mos and have had to take pain meds daily for 5 yrs but, the pain never goes away. The RSD symptoms (coldness which used to be super hot, redness which used to be purple, swelling etc) flares up quickly too. I'm still doing PT on my own now but was a reg PT patient for 4 yrs. Has anyone else had extreme muscle loss and not been able to regain it or plateaued because pain was shutting down muscles even though you are still doing the exercises and bearing wt? The bone loss which started in the leg has now progressed to other areas such as wrist, both hips, spine etc that the doc discovered on bone density test. So, I am on Fosamax as of 3 mos ago too. This disease really sucks! So, in order to improve pain levels and hopefully get RSD under better control so that the ortho can proceed with a total knee replacement, I have started Ketamine infusions. Had the first one on Fri. It was a very strange, scary experience but, I was pain free for the first time (except when under spinal anesthesia for surg) in 5 YEARS!!! Testing it, bending the knee, trying to make it hurt and it didn't! I was awe struck! On sat, the pain returned full force though and I was hoping for better relief. I am supposed to have a 2nd infusion but my pain doctor only does 2 infusions...then you might get a booster a few months later. I have read of greater success with 5 or 7 day infusion therapies in which RSD pain is markedly decreased if not remission! I am hopeful this 2nd one works longer! If anyone knows more about them or would like to share their story, I'd love to hear about it too!