Originally Posted by garnbev

My name is Beverly and I feel and broke my right ankle in 3 places 4 years ago. Almost immediately after I had surgery I knew something was wrong. My foot stayed swelled, purple, cold and hurt all the time. I couldn't stand the pain for it to lay on the bed or for the covers to touch it. The Doctor that did the surgery told me that since I didn't have insurance that he couldn't refer me for therapy. So I didn't have any and 4 years later I still have not had therapy. I was sent to different doctors each saying that is was RSD. I finally was sent to an Neurologist, who was the greatest doctor I have ever met. He looked at my foot and said yes it was RSD. He put me on all kinds of different meds and even tried the nerve blocks. ALL failed, he put me on Morphine and it took the edge off the pain, the RSD had already taken over my entire body. I also found out the the muscle in my stomach has split from the bottom of my rib cage to the top of my pelvic area, and when I go to lay down my stomach sticks out through the split. I was told nothing could be done. So he finally wanted me to try the nerostimulator. I tried the trial one in January of this year (2012) and it helped a lot with the pain. The end of February I to the Spine Center and had the surgery to have the permanent one put in. I am now having cramps and muscle cramps everywhere in my body. I have headaches, my neck hurts and I feel sick to my stomach all the time. It's hard for me to eat anything (not that I couldn't stand to loose some weight). My husband has went with me to the doctors and he has heard what they all have said, but he said it is hard to believe that the RSD can take over my entire body. I have had a doctor from the spine center say that it doesn't take over your entire body. I don't know what to do, all I know is that I KNOW my own body and how it feels. I am still taking morphine 60 mg 3X day, neurontin 800 mg 4X day Xanax 1 mg 4X day and clonidine 15 mg 3X day. Along with all the rest of my regular meds that I have to take. I have tried to walk and all I do is fall down my legs are like noodles, and if I turn down the stimulator then the pain comes right back. I use the stimulator 24 hrs a day. The spine center said that out of all there patients I am the only one that uses the stimulator 24 hrs a day. Everyone else uses it about 50 to 60 % of the time. I can only sit up for about 4 hrs then I have to lay down. I only get about 4 hrs of sleep and I scream out in my sleep if I move at night, I am tired, and cry all the time. I have had several broken bones before and I just don't understand how this time was so different and I ended up with RSD. That's in a short version my story.

Originally Posted by ginnie

Welcome to Neuro Talk. I am sorry that you suffer with this RSD. I don't have the same condition, but I do understand what the illness is, and have empathy for what you endure. There are alot of folks on NT, who will be here for you. More research needs to be done, thats for sure. I don't even think the doctors really know what exactly triggers it. It seems it begins with some kind of trauma to the body. I hope alot of people respond to you. The SCS has helped many to cope. I wish there were answers to this Beverly, that it would just clear up and go away. I am glad you found some doctors willing to help you with it. I will be thinking of you, and keeping you in my prayers. ginnie

Originally Posted by catra121

Oh Beverly...I am SO sorry to hear what you are going through. Sounds like it has been just an awful time for you these past few years and (as is often the case) I am appalled by the lack of care you received early on that might have prevented most of this especially since the doctors diagnosed you and knew what they were dealing with. How awful. Many people with RSD have been made worse by the spinal chord stimulators and I don't think I would ever risk that...but then on the other hand I do know what it is like for the pain to be so awful and to be so desperate for relief that you will believe just about anything the doctors say without doing your own research on it to find out if it's really the best option for you.

One of the members on here, CRPSjames, was made worse by the SCS and he has found amazing relief from tDCS treatment. The equipment only costs about $300 and you can do the treatments at home. I just started this a month ago and I too have seen some improvement already, as have others. There is a thread on here about it and I highly recommend reading through it. It's many many pages long but I know when I read it, it filled me with great hope that here was something that was not invasive, has little to no side effects, can be done at home so no travel to and from doctor's offices, and it is incredibly affordable and people who found no success with anything else are seeing great results. This may be a good option for you after everything you have been through.

Take care. This is an excellent forum to ask questions, seek out advice, or even just to vent when you need to. We all understand what you are going through as we live with this monster on a daily basis to one degree or another. I am so very sorry for all that you have had to suffer through.