Let me see if I can give a comprehensive answer to that question. I was first "discovered" and named Causalgia by a doctor during the Civil war. He saw that some of the soldiers he treated had pain that greatly outweighed their injuries and he started studying it. It's not very common, but it can start with something as minor as a scratch, or even have an uncertain beginning. To me one word comes to mind... Pain! Up until very recently there have been no tests to diagnose the disease. All doctors have had to go on is excessive pain, swelling, extreme sensitivity, discoloration, and a few other things that could all be caused by something else. There is no cure, though I've been told and have read that if it's caught within the first three months, it might be possible to reverse it's development.
Since it is hardly ever diagnosed within three months of starting, that's not much of a chance for reprieve. I can't remember the average number of doctors it usually takes to diagnose RSD, but I know it's high. My own case took four years and five doctors before I finally had a correct diagnosis. Not that the signs hadn't been there all along, but because those symptoms didn't fit what the other doctors had in their heads, they dismissed them as... what... I don't know... as not mattering, or being a part of the problem, I guess. I'd ask "why is my foot swollen and purpley red colored?" and the doctor would say something to the affect that it didn't fit what he thought was wrong.... so I was supposed to what... ignore it?? Well, I guess that's kind of what I had to do, so far as they were concerned.
Very recently, like within the last few months, I read an article about a study done on RSD patients where they may have developed a diagnostic tool. They took some of the surface skin in the affected area and found that 20 to 30% of the sympathetic nerves were damaged (if I remember how it went right.) The thought of anyone touching my foot, let alone taking off some of my skin, is almost too painful to think about and write!! On one hand it's good if they have a way to definitely diagnose the disease.... but on the other hand, the one called "reality of pain," it's a whole other story! Maybe they use anesthesia... I'm not sure. I just know that every time I went to the doctor and he touched my foot (it didn't take more than that) I suffered for it for several days.
I'm such a stoic on the outside that no one can see what kind of pain I am in. Oh, I'm not stone faced, or somber all the time, far from it, but to cry, scream, groan, moan, or even wince if I can help it.... not much chance of that. I stopped crying over pain at a very young age and for me to even make a sound over it, the pain has to be very sudden and acute. If I were a screamer there are a couple doctor's offices that would have been thrown into utter chaos when they gave me a cortisone shot in my foot. The first time, though I was sure it was going to hurt badly, I was ignorant of just how bad. By the time it was done, I felt like there should have been claw marks on the ceiling by the time he was done and I hurt all over as if I'd been beaten, for days after, from all my muscles instantly tensing as I tried to keep my foot still.
The second time was some three years later and though I should have known better, I let this other doctor convince me it was all in the technique. He's fortunate that I had enough control not to use the "technique" of my other (booted) foot on him when he asked if it really hurt that bad with the needle stuck deep in between my toes... and No anesthetic! Again I felt like I'd been beaten for days after from my muscles all tensing at once. I'm not sure about the first time, but the second time I believe I went into a form of shock for about 10 or 12 hours. I could not speak to the doctor or anyone else for that long, though in my head I was ranting and raving at him and his "technique." Late that night I was talking to a friend online and it was like the dam finally burst and I said it all like I was spitting out bullets. Good thing that friend was easy going and very kind. He listened well, had all the right things to say, and I thanked God this friend was there when it all spilled out.
The next time I went to the doctor, he said that more shots were needed to get and test the full effect. I told him that the only way he was getting a needle near my foot again was if I was out cold under anesthesia... so, that's what we did.
Have I described RSD well enough for you, Eve? Any specific questions are good, because they help me to pin down the things that other people don't understand about this disease. I'm not sure how well I've done with my description, since I'm in an extremely nervous state over the letter I gave my brother earlier along with a copy for the pastor. God help me to trust in Him with all my heart and not to lean on my own understanding! My imagination is trying to ride a roller coaster, while I keep trying to shut it down and trust God with the outcome. I continually second guess myself, even when I'm doing what I fully believe the Holy Spirit is urging me to do. I just want Peace! and for someone to tell me it's all going to be ok in a way I can believe it! I feel so very alone right now.
One thing that really lifted my spirits tonight, besides the good visiting we had at Bible study. My sister-in-law invited me to ride with them to the service and piano concert that are the start of the church convention here. That she invited me made me feel really good! I'm nervous over taking and using my wheelchair... really nervous... but I have to do it if I want to enjoy myself and not to have to be taken home early. This will also give me a chance to see how I'll handle going to some of the regular convention services. I won't be able to manage all day there, but I hope I can make some of the evening services. I'd already dealt with the wheelchair issue (in my mind) so far as the services at the college, so it surprised me that I'm having a hard time with using it at the church tomorrow. Maybe I won't have fully dealt with it until I've done it.
Well, this is quite long enough now and I've written a lot more than I imagined I would tonight. Jesus is the Prince of Peace! I pray He'll share with me tonight! Hold fast to Him!