Living together with RSD

My wonderful hubby, JD, has full body RSD. He was first injured when he was a U.S. Marine. He fell about 12 feet from an obstacle and was caught beneath his right arm as he landed. At first his arm was completely numb with a tingling sensation. Intense burning pain from within the limb followed later that same day. He had not broken any bones. There was no explanation for the onset of intense pain. The discoloration and swelling followed within days, and his RSD was diagnosed before the week was over. It has progressed to the fourth stage in his right arm at this time. His RSD has since spread throughout his body. The other areas are affected at various levels. This spreading may have been due to failure to gain proper control of his RSD and many surgical procedures by well meaning doctors. His body hurts everywhere all the time.

I hate watching him in pain, of course. However, I never knew JD before the pain. He had been suffering from RSD for 5 years when we met. He's now had it for nearly 10. He has always made it clear how emphatically he wants me to disregard his pain. He emphasizes how it is not his focus. I don't focus on it all the time, because it is always there. We have both accepted that we cannot live our lives revolving around the pain. However, I admit this is not always a simple thing to do. It's always there lurking in the background. Many times I find it impossible not to think about it. I upset him, because there are moments when I get "a little" overprotective. Then there are the times I have to step in, because he's not thinking clearly. It can be like being stuck between a rock and a hard place for me. It is much worse for him. I am sure of that. I would say that we try to take life one day at a time, but with RSD it can literally be moment by moment. Although, we know neither one of us could overcome all the pain and fear of this disease in and of ourselves. We have a very strong faith in God. It's His strength that fills us.

He has been through a battery of treatments. We have learned that some RSD experts advise avoiding many of the treatments that were used in JD's care. To summarize it all, his physicians at the VA began with many Bier blocks and Stellate Ganglion blocks. They attempted to immobilize his arm by various means and pack it in ice. This caused a tremendous increase in pain. JD put a stop to it quickly. He has since developed the motto: "use it or loose it!" He uses his arm as much as possible and many times past the point I would have stopped trying were it me.