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In Remembrance
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Join Date: Nov 2006
Location: SE Kansas.
Posts: 374
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In Remembrance
Join Date: Nov 2006
Location: SE Kansas.
Posts: 374
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Hi again terry,
None of the things you talked about sounded like RSD/CRPS to me. That may be because I didn't ask the right questions: Just about everyone involved with this disease agrees that it begins in one of the limbs. I disagree with just about all the experts, but I agree that it starts in the limbs; usually preceded by an injury, even if the injury went unnoticed.
Some of the major symptoms we know about are an electric-like burning pain; and limbs can feel frostbite cold at normal temperatures. There is also allodynia: a hyperpainful response to a non-painful stimulus.
Major signs can include warm, very red skin during the initial stage; followed by cold, blue skin. I'm not sure about the "take one from column "A" approach, but most lists of signs and symptoms usually require two different types of pain like I described. Changes in skin color are common but aren't essential. If they are evident, it is much easier to make the diagnosis.
If you post back to say that none of the things I just mentioned seem to stand out, I would be amazed to learn that it really is CRPS. The doc certainly seems to be treating it like CRPS, but the gabapentin has only been shown to be effective against burning pain and allodynia. If you don't have that kind of pain, gabapentin probably can't help.
I am the father of four (all grown), and part hillbilly; which means that I did the "minor doctoring" on my own. Ya know, bleeding. scrapes, lots of Epsom's Salts soaks, etc. I once took a bullet out of someone. For the serious stuff, we always took them to a teaching children't hospital (I think UCLA was one of the best, back in the 70s, I hope it still is But that won't help you).
I can't seem to find your son's name, but I have to tell you that if you answer no to those last questions, you need to take him to a teaching hospital. If radiology shows a spot on his stomach wall, something may be wrong, but it probably isn't CRPS. If it is causing all the pain and weakness, someone needs to find out for sure what the Hell it is. Guessing it might be CRPS when there aren't any of the major symptoms sounds like a really bad idea.
I will be happy to regale anyone with stories about why I love teaching hospitals, but only if someone clicks my email link and asks me to.
That's about all I have to say, except I pray it isn't CRPS, and I pray that a doc will soon learn what is really going on and then get to work on fixing it...Vic
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