Can CP ever be the mouse that roared? We think so.
Here it is, the admitted “most painful disorder of mankind”, in other words, Central Pain. Of course, this is one of those claims that can only be confirmed by those whose destiny it is to go there. And, for those who have, most of them are way too sick to say anything. That’s pretty sick.
Until finally, you get so sick, that you don’t care. Literally, DO NOT CARE. And that kind of person tends to do irrational things. We have all thought of them. Things like, Chain ourselves to a lightpole outside NIH until they come up with some pain relief. Sounds good, except we are just too sick to get on a plane to go there. And then, somehow, we don’t care any more about those who insist we make sense, in their vocabulary`, when we talk of a disease which has its own vocabulary. We vomit out the message we were too sick to speak.
Like the old maid who was jilted in high school and lives out life alone, afraid to risk, CP patients do not want to talk. They do not want to risk the rejection which talking of their bizarre disease risks. It is only when they feel they have nothing to lose, that the ugly truth emerges. It is only when we feel we are not speaking of ourselves, because we are gone, that we become willing to speak of our disease.
In the meantime, the public doesn’t just turn a blind eye, they don’t turn at all. There is nothing to look at, and if we try to use words, nothing familiar fits. Words, as you know, are codes for shared human experiences. In CP, language turns out to have a profound poverty. To have words, common experiences are necessary. People at least have to have thought about it. Hitler was unimaginable. So is Central Pain.
It is such a different quality of physical suffering that some patients don’t even call it “pain”. They have had that, and this is something different. Guess how the doctor reacts if the patient says, “No it isn’t pain, there is too much suffering”. Pain just hurts, this is stealing my soul. Quick referral to a psychiatrist, and do not pass “Go”.
Now is when the patient really shuts down. “They don’t even believe me? I’m not going to bother to try to speak! I’m too sick to confront another professional.” There goes your dignity, and there goes the chance to say anything that would uncover the diabolical situation. Why not say, “Although I probably look normal to you, I was so sick I could hardly come here today. I certainly cannot wait for an appointment with a psychiatrist, just because you don’t recognize this condition. Do something now!”.
When it comes to Central Pain, no one even imagines such a thing is possible. Permanent torture? Could Nature, which sustains life and gives us waterfalls, rainbows, and beaches have included something so dark as Central Pain?
The brain, sitting floating in the skull, working the machine of our body, has its desires. And one of those desires is not to be shut off from the environment. Nature has programmed the species for survival at any cost, or so it would seem.
Now the brain wants information. It is like the internet. It wants to get bigger all the time. If all the big computer servers were suddenly to crash, the internet would find a smaller machine somewhere and try to do something with it. Not much would make sense from such a machine, but the internet would still be alive at some level. Some information would keep flowing. It would be very hard to make sense of it, and it wouldn’t really be the internet, but it would be something.
Sound familiar? The brain wants information from the environment, no matter how it has to get it.
When a nerve is injured, or even worse, when the cord or brain are injured, the brain will take what remains and recruit whatever it can to keep the information flowing. If the damage is total, everything devastated and dead, there is no place to start. But if there is a little life left in that nervous tissue, what will the brain do with it? The brain does not pout, saying, “If I can’t have everything, I won’t take anything at all.” In point of fact, the pain system is designed to start screaming “DAMAGE ALERT”, the worse the nerve functions, until things go dead.
In 1949, in the Journal of Clinical Investigation, a very high grade research journal, Hardy conducted a series of experiments on the sequence of sensory nerve failure. This sequence is often shown to Anesthesiologists.
The technique for studying durability in pain sensation is as follows:
Put a blood pressure cuff on the arm, and inflate it. Leave it inflated long enough to cut off nerve function from lack of oxygen. Then try to hurt the arm. Pain sensations disappear in an orderly and predictable fashion. As the oxygen supply is cut off by the tourniquet effect, one pain sensation after another becomes disabled. At the very end, the only pain left is what is called “protopathic” pain, a strange burning.
Pin prick and cutting pain are gone. Protopathic burning is poorly localized, and feels diffuse. In other words, it is one of the pains of Central Pain, where we call it “dysesthesia”–a bizarre pain. (Something similar occurs when capsaicin is injected just under the skin. The tiny C fibers release Substance P which travels up the nerve to hypersensitize the dedicated cord receptors, which intercommunicate with ALL pain fibers, which reciprocate by producing burning on a much wider area, back down on the skin. Although the injected area hurts, capsaicin pain is more often used as a model for “allodynia”–because there is a pain response with capsaicin to what should not normally be painful, in the area OUTSIDE the injected skin. The spread of pain to the zone of uninjured areas is considered remarkable. (This phenomenon is universal in Central Pain)
So, diffuse burning is durable, the very most durable of all pains, as has been known for over fifty years. Imagine now, an injury to the nervous system, perhaps the cord. At first, things may have blanked out entirely. There may be NO sensation at all. With time, thanks to healing, the injury to the cord is shown to be INCOMPLETE. Some sensation returns. But if only a very small portion of sensation returns, guess what kind of sensation it is. Yes, you are right. It is the durable diffuse burning, the so called “protopathic” pain. (Normal pain is called “nociceptive” pain, and well localized pain is called “epicritic” pain).
It is theorized that the small, delicate, unprotected C fibers do not grow back, but are replaced by A delta pain fibers, which never connect to the inhibitory control mechanisms on C fibers, and so institute their little Auschwitz of Central Pain. (Pain nerves are graded by decreasing size, from A to C)
What has happened is that the brain, with its priorities, wants information from the environment. The problem is that it has had to recruit the protopathic pain mechanisms for its information supply. This is very bad for happiness, but good for the brain’s survival and information flow. However, the information is untrustworthy, it comes minus the discriminative information which makes pain meaningful and useful. It does more harm than good. It does not enhance survival, it threatens it.
Want to know where you are being touched in CP, the pain tells you but there is pain there even if you are NOT being touched. Want to know if your bladder or gut are filling? Just feel the pain. Want to know if your muscles are flexed or extended? Both sensations will be cranked up so high that you will think both are going on all the time, and yes, you will have pain from movement, perhaps so much that you are functionally paralyzed, or at least limited in activity. This is not very useful pain. It comes at too high a cost. As Buytendijk said, “It is usurious”
The muscle pain will manifest as a burning cramp, a crushing, or pulling sensation. These pain sensations are carried up the cord in the front, through the spinothalamic tracts, which wind like telephone wires around other tracts. The ST tracts are too small and too spread out to be seen on MRI. The pains will be diffuse, poorly localized, and you probably won’t regain much discriminative (fine) touch. You especially won’t have fine touch at the ends of your limbs or other parts, out where the nerves have traveled farthest.
Now if there has also been injury in the back of the cord, you will discover that your balance is poor, or else you have none at all. If these tracts are damaged, the tracts of the gracilis and cuneatus tracts (the so-called posterior columns), you may have shooting or lancinating pains (in addition to the spinothalamic dysesthetic burning). These lancinating pains will stun you at first, like shocks, shooting along the nerves. They will be the most intense of all the CP pains, but they will cause you the least fear and suffering because you will learn these pains are intermittent. They do not stay. If you focus on the shooting pains, you will often feel almost imperceptible twitches at the sites where these lancinating pains originate. You will probably also have an abnormal SSEP (somatosensory evoked potential), which is a test neurologists use to detect posterior column cord injury. Scarring there lengthens the time necessary for a signal to get through the cord.
You will also find your arms and legs “go to sleep” incredibly easily, almost without any circulation compromise at all. The pain afferents associated with your blood vessels have also become hypersensitive. This may drive you nearly buggy. There will be other pains, but they are covered elsewhere at this website.
We won’t go on to those other pains, nor will we cover the loss of working memory or loss of concentration, which is part of fully elaborated CP.
What we WILL say is “WHY DOESN’T ANYBODY EVER HEAR ABOUT CP?” . Once again, we are just too sick to say anything. We are just struggling to get through the pain today, not planning a long term strategy. We don’t want to think about the long term, today is bad enough. But eventually our sense of justice is offended and that may drive us to speak out. Without a vocabulary, others generally don’t listen. Still, our very silent voices begin and oftentimes, continue, intermittently.
Some, but not most, doctors, are intrigued by nerve injury pain. Here is a living, breathing articulate lab rat who can tell them about pain components. Even as they injure the rats and try to learn about pain, they begin to realize human beings who match their rat models are sitting in the pain clinics. Admittedly, they have no vocabulary, and they are a strange bunch. They speak English but they mean something else.
They cannot find any words, but they submit without hesitation to the most awful brain surgeries, in the hopes of a cure. They wear little clothing, and are sometimes preoccupied with room temperature or how to get food down without pain. A review of their lives reveals they go to great lengths to avoid the pain of movement, or other muscle pains. Paradoxically, they may even giggle or laugh to avoid the embarassment of severe pain. The closer you get, the stranger they appear. There are clues all over them for the careful investigator, which reveal a tremendous amount about how the nervous system actually operates. Their weakness becomes a sort of attractive strength for the clinical investigator.
Now for the investigator, if you are distracted by what you do not see and do not hear. If you forget how really sick they are, you will not exert the effort necessary to question out the real story. Their loss of hope, their desperation drawn out to the point where they no longer care, their loss of identity. Those with the least to lose are the ones with the most information to offer, but they don’t feel up to a conversation, until they see you are actually looking at the disease, not just at them. This is the opposite of the normal patient, who wants to know you care about “them”, because this patient realizes the real them is gone. They want you to study what is left, the demonic burning which has possessed their bodies. It is evil, and they want it destroyed.
They have a little survival strategy involving a lot of isolation, so they may prefer you speak to their families, to help those realize they are doing all they can. One thing they do not need is some lecture about their obligation to be productive. They know they must devote their limited resources to survival.
Do not look for the cooperative patient. They probably don’t have severe CP. The sick ones are probably cursing you for asking them to talk, wondering what you are doing there with that white coat on, if you are so ignorant that you ask questions that cannot be answered. They came seeking own answers and all you are doing is asking questions. They know your employer wants you to “process” patients faster. But they are really sick and do not regard this as an office visit. It is a survival visit. Routine questions do not apply to their world.. Routine is a synonym for NON-CARE. The exhausted, sick ones won’t take much of your time and that may please you, but you are not being true to the Hippocratic oath if you let that happen.
Look deeper. Look wider. Ask questions of degree, not “yes’ or “no” questions. “Does this hurt?” when touching them may get a “no” answer initially and only become “yes” when there has been time for slow summation or Mitchell’s delay. They already had burning skin pain BEFORE you touched them, so your question seems idiotic. You should be asking, “Does this cause heightened pain?”
Set your customary neurologic exam aside. It has nothing much to teach you about central pain. You are in another dimension from what the ordinary neurologic exam was designed to examine. The neurologic exam you were taught in school is mostly binary. It is either “yes” or “no”. It measures TOTAL loss or TOTAL normality. It has nothing to do with PARTIAL nerve injury. It usually fails miserably when nerves function is present but limited, which is precisely the state for most central pain patients. It is time to purchase some Von Frey filaments and learn how to use them.
One common way to use the von Frey filaments is to have the patient close her eyes, while an assistant pretends to be checking the knee jerk. Quietly touch the nose with a fine filament. Normals will feel this instantly, even with very soft filaments. With partial nerve loss, and the distraction of the other exam going on, you may be surprised how you can tickle someone’s nostril, without their detecting it. Learn how to do the neurologic exam to see how speed of response and degree of accuracy give a glimpse into PARTIAL malfunction. Require the patient to do “finger to nose” and alternating movements rapidly and see how well they do. Don’t let them cheat. They can fool you if they do it slowly, or if you pull firmly on the ligaments.
Do the Homan’s test by flicking up the middle finger hard instead of merely depressing the nail briskly, as you watch for the index finger to reflexly jerk downward. Is the SSEP normal? That only proves the posterior columns are functioning normally, nothing more. If you want a look into the Spinothalamic tracts, you must acquire new skills and new knowledge. You must know how the medial and lateral ST tracts differ in clinical dysfunction.
And remember, in severe pain, silence is deafening. They ought to have a running objection as you run your tests, since touch burns. Silence does not mean nothing is present. It may mean there are no words, no vocabulary, or that they are trying very hard not to put you off. You must provide clues as a lattice on which they may string their attempts at language. Here are some clues:
1) How many types of pain do you feel, and where do you feel them?
2) How are these pains different from pain as you knew it before?
3) Can you tell where the surface of your skin is without something touching you?
The CP neurologic exam can be learned. But use “the right tool for the job”, which ALWAYS includes von Frey filaments. (a source for these can be found at painonline.org).
And so, the very silent voice can grow. A few pebbles rolling down the mountain side now and then. Can a landslide ever be generated? How loud can we get? We don’t know. During World Ward II, the annihilation of MILLIONS of innocent Jews was whispered in a few circles, but it was too awful to be taken seriously, until such time as it was clearly manifest. Then, the world was shocked. Stunned. Embarrassed at their own species. There was nothing to be said. It was too powerful. One could only feel and be horrified. We were guilty because we didn’t listen to the whispers. The human race was guilty, because “no man is an island”. Still, the Holocaust proves you can hide quite a bit.
Central Pain is that way. It IS the worst pain state known to man. There ARE members of the public right here in America and in other civilized nations, who are suffering dreadful, dehumanizing, torture. No need to travel to brutal dictatorships to witness an outrage against humanity. It can be seen in your own neighborhood. The neurotransmitter Gestapo is at work right now, in your town, on the bodies of innocents. You will have to search rather carefully, as they are too sick to call to you.
WE ARE HERE. WHERE IS THE PUBLIC? Normal pain is bad also, and should be ended, for the most part. Neuropathic pain may not come to them, but they still have a powerful interest, but must act to assist neurotransmitter research before it is too late. They may one day lie snockered out of their minds from cancer pain and the meds to dull it, when they should be living the last months of their lives in dignity, not demolished with pain. We are all in this together. Neurotransmitters must be studied.
We know that you, the public, are like us, that we would not believe in Central Pain ourselves if we were not living it. We know you are uninformed, steeped in normal pain, lack the background in neuroscience to get a clue what we are talking about, and when we say the word “pain” you will assume you have the measure of what we are saying. You have had pain, so you know what that means. It is really bad, right! What would you have us call something which causes worse physical suffering than pain. We await your vocabulary choice.
Riddoch, writing in the Lancet, termed Central Pain, “The pain beyond pain”. Will that mean anything? Yes, it will actually DIMINISH your perception of what it is because “pain beyond pain” sounds impossible and therefore will not register. We look normal, but you CANNOT SEE PAIN.
Why aren’t we crying? The tears have all been cried out. And “WE” dont’ exist anymore. The “real” us would cry, but smoldering hulks of people are below that.
The pain drains our identity, not our tear ducts. When the imaging device is developed to SEE pain, and such a device is coming sooner rather than later, then you will grasp the power.
So the question remains. Will we ever be heard? Will the ovens be turned off? Painonline says “Yes!”. This disease operates with cold indifference to status, education, or fame. Sooner or later, CP will hit someone big, someone who can access the world’s ear. That someone will be too sick, like us, to do anything themselves. But that someone will have someone else, who loves them, who is NOT sick, and who SEES the outrage. And they will do something.
Ten years ago or more, a wealthy man in Dallas contracted CP, and no doctor could diagnose him. He took out full page ads in newspapers describing his symptoms until someone finally told him he had Central Pain. He then devoted his wealth to encouraging research. His courage is part of the inspiration for Painonline.
Society will one day provide the funds necessary to uncover the mysteries of pain neurotransmission. The National Institutes of Health will pay the bright minds to determine how to block the action potentials which course through our pain systems. Will the lurking brain of pain be upset when its traitorous supply line of information is cut off? NO, because the brain has a heart.
It is true! The brain wants to shut down its own greed for information, but has been so damaged it cannot. It would have helped us out long ago, sacrificing its information, so that the torture could end, but its inhibitory signal which runs in downward tracts was blocked by the same injury which caused Central Pain.
Yes, the mouse will roar. We will be heard. Say whatever you have to say, however you can say it. If you can’t put CP into words, you can at least tell people you are in agony. That has meaning. Many words have meaning. Use them to WRITE!!! Send the quiet messages to elected officials.
CP will be cured. We will move to an era where these tortured people no longer exist because they can be treated. How far away is that? It is only as far away as is the funding. Sufficient knowledge and personnel exist right now to solve this problem. We must let the public know we are inside this neurologic dungeon. You may not be able to talk, but you can whisper, or pass a note, as it were. Bribe a guard. Get the message out, in any way possible.
The public is good and decent. Incredibly decent. They will not willingly tolerate torture. Start a whispering campaign. Get your friends and family to help. Write to your elected U.S. Senators and to Elias Zerhouni (NIH, Bethesda MD) and start telling them loud and clear of the pain. Let the sound be heard. Let the lowest of the low take away the shame of mankind, by giving them the privilege of ending needless suffering.
