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Thread: Pain has taken my life over..

  1. #11

    Just checking in

    Hi Stiggy,

    I think of you often, and wonder how things are going for you. Please check in, and post when you can...let us know what's going on!


  2. #12

    This made me think i wasn't crazzy {totally anyway}

    Stiggy i don't know if this helps but perhaps if you know your doctors E-mail
    perhaps you can help him in his moment of ingorance!! I was going to e-mail to you but I didn't find one I had to read this twice to get the full effects!!

    The Enormity of Central Pain

    The physician first viewing Central Pain must widen their focal length from the normal perspective to an extremely broad "fish-eye" view. Otherwise, the symptoms are so extensive and diverse that they may be standing looking at a solid wall of pain and see nothing but a blank spot. Once they can see the enormity of the problem that patient is facing, the physician must then reduce their focus to the microscopic to painstakingly dissect the individual symptoms, since they must assess them without the benefit of language. Central Pain cannot be adequately described, and no one experiences the sensations except those who have the disease. Oddly, this is not much easier for the patient, since the disease speaks in a language even they do not understand and iileave the patient in shock.

    Any disease must be simplified to some extent for the physician to understand it, and this is especially true for Central Pain. Even normal brain function is poorly understood, and the abnormal brain function that occurs in Central Pain poses a special challenge.

    Consider the disease of diabetes. A relatively simple deficiency of insulin prevents the body from oxidizing glucose in the body's cells.

    Legions of physicians from nearly every specialty have attempted for years to understand how the body produces and releases insulin. What seems on the surface to be a fairly straightforward problem has bewildered the brightest minds in medicine as the complexity of even the seemingly simple processes involved when the body processes sugar.

    The processes that involve the varieties of even normal pain systems are apparently much more complex, and we are that much further from understanding these sensations. It is well known that animals can perceive colors at light frequencies to which man is blind. Even if an animal could speak intelligently, imagine the challenge of describing a color that we cannot perceive. The discovery that physical agonies that cannot be perceived by the normal brain, but nevertheless exist, is not so easy to prove unless you are willing to take patients at their word. As proof of their claim is the fact that these individuals have been willing to undergo the most dangerous and debilitating brain ablative surgery, to mortgage their homes and sacrifice relationships in order to pursue a cure, to abandon the wearing of clothing which would afford societal acceptance, and the willingness to adopt isolation in which to struggle against the pain, conserving the energy imposed by societal strictures in order to survive.

    Most of all, patients do an absolutely abysmal job of describing their severe pain. The physician, who is used to considering pain as the one area of the medical history where even an extremely poor historian can do a surprisingly accurate job of description. Physicians are ill prepared to understand a pain that is beyond pain, a pain that is beyond words. Nature has blessed the human body with a cornucopia of information about pain, but when there is nerve damage, there may remain the ability to generate tremendous physical suffering while providing very little in the way of discriminative information about the pain by which to guide the physician. Unless the physician is aware that nerves may drop the discriminative characteristics that are ordinarily part of pain before finally yielding up the ability to convey a vague, poorly localized burning (the last gasp of the pain nerve, so to speak), they may discount entirely the patients complaints. It is not that such phenomena are difficult to demonstrate. A commonplace blood pressure cuff, left compressed, is sufficient to demonstrate the order and sequence in which pain components are lost. Dull burning is always the last to go. The problem is that nearly all physicians have never performed this simple investigation.

    It is the simple dull burning which is at the heart of Central Pain. It is often combined with some morphed and distorted fragments remaining from other sensations, but it is close enough to dull burning or to the allodynic burning from an injection of capsaicin, that physicians need not remain in complete puzzlement over its nature.

    Going beyond this however, the physician must realize that the blood pressure cuff and the capsaicin are only demonstrating cutaneous pain. In Central Pain, the pain fibers of the gut, the dura, the visceral afferents of blood vessels, the sensory wing of the gamma motor system (muscle spindle), shooting pains that may volley along the large fiber, rapidly transmitting posterior columns (as they do in neurosyphilis) and other pain systems are also involved. There is no way to elicit these pains with a blood pressure cuff, but they may be present, nevertheless.

    Also of trouble to the physician's awareness is the fact that Central Pain is spontaneously generated. External stimulus may augment (evoke) greater degrees of the pain, but the constant noise of signals in the injured nerves is sufficient to cause spontaneous pain in the sensitized nervous system. Finally, the physician does not consider that the time lapse between the stimulus and the perception of pain, which is greatly slowed in injured nerves. Once the threshold of pain is reached there is a tremendous overshoot to unbearably severe pain. None of these things characterizes normal pain, and physicians often have great difficulty adjusting their view.

    All language is code. In Central Pain there is the further problem of descriptive drift. In describing it to others, we lean in the direction of normal pain for choice of words and our listeners, not comprehending, lean even further. This "descriptive drift" bogs down the process of communication. Far too often physicians are inclined to think Central Pain is on the order of a headache, warranting an over-the-counter drug. In reality it is an internal torture mechanism that is life threatening. Far too many victims of Central Pain have taken their lives in a desperate bid to escape their prison of pain.

    Descriptive drift afflicts not only the physician but the central pain patient as well may revert to the unfamiliar, to unscientific, and even to almost superstitious terminology that is often associated with severe pain. The language to describe this illness is by no means precise, and it takes a clever examiner to listen long enough and perceive the clues to make a diagnosis without the possibility of lab tests and x-rays.

    The traditional art of clinical medicine must be resurrected in Central Pain. If physicians will listen long enough, the patient will say what is wrong with them. Of course, in the case of Central Pain, the listener must have great patience, perception, and empathy. Even the patient is often still struggling to understand the bizarre sensations of this illness, to the extent that they have difficulty describing it to themselves. That is the extent to which Central Pain is different from "normal" diseases.

    Patients, embarrassed at their own "stupidity", then assume the doctor knows that Central Pain has delays, windup, or whatever, when in fact the physician hasn't a clue that such differences exist between normal and nerve injury pain. Language is a complex code that we share through a context of shared experiences. In this manner, language denies us the ability to convey alien experiences. Our body is suddenly speaking a new language, and even after the patient begins to understand it, it is impossible to adequately describe the experience to someone who doesn't know this new language, that of Central Pain, exists

    >They say it takes a minute to find a special person, an hour to appreciate
    >them, a day to love them, but then an entire life to forget them.

  3. #13
    Senior Member alan's Avatar
    Join Date
    Jul 2001
    Baltimore, MD
    I used to hate filling out those "describe your pain" forms, because just about every adjective on them described some part of my body.

  4. #14
    Senior Member Stiggy's Avatar
    Join Date
    Jul 2002


    I want to thank everyone for all your kind words an support.alot has happened since my last post..I became very sick due to the pain in my back an leggs.I have a large black and blue mark on my right legg due to me clamping down on my legg with my hands.I live in the thumb of michigan and i dont know where to turn as far as a doctor who can treat my pain.I have a doctors ohio..I guess they know something about sci`s.Im all alone up here in michigan,no one seems to know much about sci so im just trying to wing it.I`m still trying to understand my doctor an his way of thinking!I really believe that doctors have lost are compasion when it comes to the sick.Its seems that a decent life style is so far from reach!Anyone who lives with pain the way I do my heart an prayers
    go out to you.God Bless an keep rolling

  5. #15
    Hi Stiggy, welcome to carecure by the way. Have you tried any of the suggestions that have been offered? I don't experience central pain so I don't have much to offer but I wish you the best and hope your next appointment finds a solution to your pain. Hang in there!

  6. #16
    Stiggy, I'm glad you were able to post, and update us on your situation. My daughter is working with the docs at University of Michigan; maybe that would be an option for you. It's a little closer than Ohio, and there are some very good doctors there. My daughter currently sees Dr. Ann Laidlaw, a PM&R doc in the clinic right in U of M's hospital.

    It sounds as though you need a doctor who is both familiar with SCI and with pain issues. U of M is very involved in pain management, something which has impressed me. It's also a model SCI center.

    Take care,

  7. #17
    Senior Member Stiggy's Avatar
    Join Date
    Jul 2002
    Hello Again an thx for all your help but I was wondering if anyone in Michigan knows where I can find a good doctor.I live in Saginaw Mi.My pain is no different an I get little sleep.I have feelings in my leggs with some movement in my left legg.Thats about it But I will never give into this evil that has taken over my body.I wrote this a while back for whatever it means..

    There are Dreams..
    Look at me..
    I`ll be what I can be..
    Walk with me an you`ll see what I can be..
    Don`t you see..
    I`ll be Free!

  8. #18

    I also highly recommend the department of PMR at the U of M hospital. I'm not sure how far that is from Saginaw, but it's 3 hours away for us, and we consider the trip worthwhile. Especially commendable for his comapssion and expertise is Dr. Tony Chiodo.

  9. #19

    I second Dr. Chiodo!

    He was my daughter's PM&R doc when she was in rehab at U of M, and I agree with glorybee55...he is great! My daughter switched only because she prefers women docs. I thought he was super. It would be worth the drive from Saginaw to Ann Arbor, in my opinion.

    Take care, Stiggy.

  10. #20
    Junior Member
    Join Date
    Oct 2002


    Doubt this will help you,but i'll offer it anyways.I used to have cronic foot pain that was unbearable at times.I'm not a fan of narcotic based pills plus they rarely helped anyways.Well my spasms got very bad so i increased my baclofen does by double and would smoke weed before i went to bed.I started to notice that not only were my spasms better but also my feet went from a constant burning pain to a minor pain i could tolerate.Probably wont work for you,but did wonders for me.

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