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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

  • RSD in mouth?

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    Old 06-04-2008, 09:10 AM   #1
    bruegelfan
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    RSD in mouth?

    Hi all, my boyfriend suffers from burning pain in the left side of his mouth, swallowing problems, plus some(to much to try to list the whole symptom set). He was diagnosed with atypical trigeminal neuralgia several years ago. Only problem was his symptoms do not really match that particular diagnosis. I've thought for some time that he got that diagnosis and the doctors just didn't bother looking in to anything else. He recently switched specialists and the new guy(who we love)thinks that his problem is actually RSD. I've been researching RSD and though it can affect the mouth, it's not very common. I'm just hoping to find some people going through the same...

    Last edited by bruegelfan; 06-04-2008 at 09:11 AM. Reason: typo

     
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    Old 06-04-2008, 01:24 PM   #2
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    Re: RSD in mouth?

    If your doc really knows his stuff, he might have also mentioned a condition called causalgia. This is essentially RSD, but affecting primarily a single nerve. Not a single nerve fiber mind you, but more like a nerve bundle, or branch. The areas affected by pain will depend on where along the nerve the original damage occurred. You didn't mention much history, but did your boyfriend have any injuries to the face just previous to the onset of pain, or, and this is a more likely cause, did he have any dental injections on that side of the mouth?

    It is not uncommon for a dental injection, or procedure to cause nerve damage and, to give your first doctor some credit, the trigeminal (or facial) are the most likely victims of hypodermic needle piercings. Usually, the nerve heals without any residual symptoms, but occasionally the pain inputs to the central nervous system initiate a series of physical changes that cause the area supplied by the nerve to become extremely sensitive to any sensory input. This results in the perception of extreme pain, often burning in nature (along with swelling, color changes and potentially a breakdown of the tissues involved).

    Another nasty aspect of RSD (which is now called CRPS [types I and II]) is that it can spread to areas supplied by adjacent neurons. This is due to the fact that the excessive and continuous electro-chemical pain signals sort of bleed over to adjacent neurons causing them to change over time and also become far easier to stimulate (makes them WAY more sensitive). I hope this isn't his situation. The most important thing is to receive adequate pain control early in the condition. All of the more recent research has shown that aggressive pain management is the most effective way to ward off RSD as a permanent condition. Sometimes this is hard to convince doctors of, as they are concerned with addiction and the DEA. But, all the research points to pain control and therapy first, worry about addiction later. The truth is that opiate dependence can be dealt with, RSD, once entrenched, is at this time incurable.

    Finally, (sorry this is so long) even if your friend had no injury, or needle stick, the fact is, trigeminal and facial neuralgia can occur spontaneously (possibly due to a virus) and chronic regional pain syndrome type I, or II [RSD] can follow, though it is rare.

    I truly hope this is of some help and that he receives the care he needs to beat this (by the way, most cases do resolve, or go into remission w/in the first 6-12 months). I only wish I knew 10 years ago what I know now, it might have saved me a lifetime of pain and drugs. Be aggressive about getting him help and if it isn't working, move on.

    Best of luck, Kevin

     
    Old 06-07-2008, 04:22 AM   #3
    bruegelfan
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    Re: RSD in mouth?

    Thanks tons for the information! The more I research causalgia, RSD, etc.. The more I think we're getting really close to figuring this thing out. I'm sure we're on the right track now, anyway. Sorry it took me so long to respond to your response!! The last few days of school have been rather hectic

     
    Old 06-09-2008, 12:19 AM   #4
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    Re: RSD in mouth?

    Bruegelfan,

    No need to apologize, I don't do this for recognition, only to help if I can. I only hope that the information I have to offer is of help and that the person in pain is lucky enough to avoid what I've gone through.

    Just remember; you and your boyfriend are your own best and most faithful advocates. Reach out when you need information, but don't be afraid to tell someone to F-off if you think they don't have your best interests at heart, or if they are holding back because of fear of the DEA, lack of knowledge, or their own prejudices.

    Best of luck,

    Kevin

     
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