Weirdness is of course the whole point. That is what we try to convey to our doctors, who insist on putting us back onto the Procrustean bed of non-weird (normal) pain. Actually, when you think about it, even normal pain is weird. How did pain get here, anyway?
You recall that Procrustes was the mythical Greek giant who greeted travelers with an offer to sleep on his guest bed. He had the odd requirement that each person fit the bed exactly so he cut off whatever part extended, usually feet, to make the fit exact. The message about life is to stop trying to fit things into preconceived notions, a giant tendency in mankind.
Doctors too often lop off whatever does not fit their preconceived notions of what pain is and what it feels like (from THEIR OWN experience) and are not only content but insistent on dealing with nerve injury pain within the confines of THEIR own nervous systems (systems the like of which we once possessed and now sorely covet–little did we suspect what injured pain nerves could feel like). Even agony is expected to play by the rules. There are presumed to be rules of war by which pain behaves itself, even in its severe forms. The idea of rogue, insane, deformed pain behavior is foreign. Even as the complexity of a formed pain sensation is overlooked, there is an assumption that pain must of necessity hold itself together and make it home on one wing. If it were any other way, how could we maintain that pain is what we are experiencing.
Our genome is a fantastically complex operation as long as from here to the moon, if unraveled from its double helix (discovered by Francis Crick, who has written with respect to the insular cortex, here for this site). It is composed of DNA, containing an incredible number of genes, most of which manufacture amino acids, which the cell appparatus turns into peptides or proteins, which act like micromachines to make the process of life happen. There is probably some spirit somewhere to give a life force, but we know little of that. The whole thing, ie. us, is full of receptors, shoppers for the products manufactured by the ribosomes. A receptor in the nervous system is a switch, which responds to a neurotransmitter. The switches for pain are composed of proteins or peptides which are constructed from amino acids which proceed from the the pain genes. In reality, CP is really not that hard to imagine. Normal pain is the product of little molecules released by certain genes according to an ordered fashion. If you eliminate the sense to the assembly line, disorder the operation, but turn the individual gene protein factories up to maximum output, with pain exciters spilling out on the floor of the nervous system everywhere, you get central pain. Easy, isn’t it! And just for the record, some very bad things can happen in this situation. Indescribably bad. What did you expect?
Supposedly pain is the most straightforward sensation on earth, which is indestructible, and not capable of subdivision or disordering, so long as it is present. It is the one true North of human life, a fundamental entity of the universe. Does this make sense? Every person with severe central pain knows that normal pain is a very sophisticated proposition which we can no longer manage, and its substitute in us really makes a mess of the whole attempt, making up in severity for what it lacks in precision.
The nervous system realizes it is doing a poor job and so pours out molecular pain exciters as if monstrously increased quantity could ever make up for utter lack of control. Our brains certainly get the message, Armageddon has arrived in our nervous system. CP is quantity over quality. We are now free to crawl through the garbage dump that was once our nervous system, and try to survive on scraps. A futuristic nightmare of pain. Central Pain is Science Non-Fiction, a tale written by a deranged and sadistic author. Gruesome, ghastly, and destructive, it can end affection, integrity, and identity. Our humanity looks like something out of the worst bed in a burn unit. Our own thoughts make us sick. Our shrunken lives are disgusting, pointless, and sick jokes conceived by the devil himself. Normal pain has trouble doing that. CP isn’t from God. It is the opposite of God, just like all really terrible disease.
It is that terrible combo with spinal cord injury to make the whole thing truly beyond description. CP hides behind paralysis or sensory loss, which is the only thing big enough to make doctors miss it. The wheelchair is so instantly disturbing to the eye, that the mini-shock of seeing it is enough to blind the observer to something much worse lurking in the shadows of impaired mobility and loss of ordered sensation.
Remove all useful information from pain and attempt to substitute by forcing every pain synapse to fire in large bursts. Turn out the lights, fill the room with smoke, and then let the sheer noise of the pain inform us that something terrible is there in the room with us. We are on our own, since the clarity which pain normally retains has long since abandoned us. The guys running the system have hit the red alarm button and then bailed. Zorg has now arrived from outer space to take control of our bodies through our pain systems. The only metaphor that comes to mind is landing in hell and finding it is so much worse than we ever expected, and lasts, forever.
Pain to someone with a diploma is supposed to have a fit, the best fit possible, for non-nerve injury pain is the most precise and exact symptom in medicine. That would be convenient for them, to think of all pain as circumscribed by THEIR notions, but nearly useless for us. The problem is that the sheer creepiness and multiplicity of pain sensations of CP does not come out to resemble its parts. The burning and cold common to dysesthesia refuses to compute. Thank goodness for dry ice or we would really be considered looney. Dysesthesia is like saying “old and young”, “beautiful and ugly”, “tall and short”, “sunny and pitch black”. Central Pain is its own suffering. It is, as Riddoch said, “A pain beyond pain”. Normal pain is discrete. It takes a village to make the central pains.
Even among those who have central pain, there is a staggering range of experience. Those twisted enough to make torture a profession tend to have favorite methods. Every country has these people, and shamefully, that torturer is also inside each and every one of us. There is a movement afoot to make torture illegal, but you cannot legislate it away until you have solved the problem of central pain.
Given the right circumstance, fueled by some kind of pseudo-religious or hateful indoctrination, the ability to torture other human beings lurks in the dark corners of every human mind. It would seem that for every agony, there is a corresponding potential to conceive a method of inflicting it. There is definitely a Dark Side of the Force in every human being.
Fortunately, there is also a light side, and we move toward one pole or the other, depending on our acculturation, inclination, and choice. If we had a kind mother, and reasonably non-sociopathic friends, we will at least flatter ourselves that we are inclined toward the light and generally move in that direction. There is a great deal of good in every human being, except of course, when it comes to central pain. The reason is that central pain is not known to exist. Consequently, the public’s indifference is nothing short of appalling.
While the public can be excused for not understanding the very complex workings of the division of the sensory nerves devoted to pain, doctors cannot. It is far past the time when ignorance concerning the matter can be written off. Not one, but multiple journals document effectively not only the symptoms of central pain, but also the actual mechanisms.
What are those mechanisms? Nature has put conduits for electrical stimulation in every cell, with elaborate systems to direct neurotransmitters to one or another of the receptors to accomplish life. Life is tough, and difficult to survive. Consequently, Nature provided an apparatus for survival which exceeds even the human will and intelligence to override. That mechanism is pain. What we would willingly tolerate, even if it led to maiming or death, PAIN will not allow us to tolerate. There is a tremendous amount of respect for LIFE in Nature. Pain is one of the greatest tools of accomplishing survival.
What is odd is that there is no shut-off switch for central pain. Certain corners of existence are so impossibly odd or hopeless that it is a wonder Nature still honors the idea of life in such people. The jump from spirit to physical being is apparently so worthwhile that all manner of physical malady is allowed.
But having accomplished life, having gained a physical body so to speak, what would be the purpose of stringing out that existence in pointless pain? Why not insert a shutoff switch for life when central pain swoops down on its horrible wings to wrap the hapless victim in a smothering blanket of hellish suffering. Why not cut things off in mercy and simply await the marvels of the resurrection to set things right again. It is hard to consider this without speaking of a collective lifehood. For the individual, human life is over once severe central pain settles in to feed.
However, just as pain maintains life, collective growth and prevention is benefitted by public awareness of problems. One may not have gout, or Tay-Sachs disease, or hemophilia, but life being what it is, the slow but steady solutions to human maladies occur because a GROUP of individuals is identified which has a particular problem. We do not fear polio today, because several decades ago, witnessing the horror of children living out lives in an Iron Lung, Jonas Salk was moved to develop a vaccine.
In some ironic way, each suffering child was a savior to each nonsuffering child who can live today without fear of the disease. They made a plea, which was answered in the lives of later children. Humanity moved on and forward. The COLLECTIVE prevention of polio, or victory over a little virus, was made possible by the living sufferings of unfortunates in prior years. Scripture says little about this except that God will make it up to them in the hereafter, wiping away all tears and sorrow. Heaven would have to be a pretty nice place (better than just sitting there singing “Halleluiah” over and over again 24/7) to compensate for the sufferings of severe Central Pain, but apparently it is just that.
So having bowed the head, and accepted our fate, what can we do to enlighten and raise awareness among those who matter (the PhD’s) of our plight? The answer that first comes to mind is to explain, carefully, fully, intelligibly, and shamelessly, that central pain is different. We speak here of the burning dysesthesia, which, as Bowsher pointed out, includes a paradoxical component of cold, which is so confusing that it may take the CP patient a while to figure out what the background noise is in their burning. Usually, the cold allodynia component is discovered when the blast of a car air conditioner is directed at the legs. Still, it usually takes a while to figure out that there is cold in the midst of all that terrible burning. And with time, they will realize wetness ia also there and several other unpleasant sensations which they may never figure out, but often go under the word “creepiness”.
The doctors are no more articulate. Instead of calling it “burning cold”, they invented the term “burning dysesthesia”, which sounds more scientific, and prevents people from staring at them as if they were crazy, but is actually not a very descriptive term. Cold allodynia can be part of other medical conditions. It is always startling to meet some medical expert, well published on cold allodynia, who nevertheless is unaware that cold allodynia is part of burning dysesthesia in Central Pain. Cold allodynia, or painful overreaction to cold, is usually found in peripheral nerve injury.
The lancinating pains in the posterior column, terrible as they are, DO respond to treatment. Even morphine, utterly impotent for the burning dysesthesia, manages to give some relief to the lancinating pains. We do not really have to go into those to find acceptance in the medical profession. Anyone who cares can simply read the literature on neurosyphilis, which is extensive, and they will find that the shooting pains of the posterior columns drove the victims crazy.
Ditto for the “pins and needles” (pseudocirculatory pain) or “pseudoclaudication” (muscle aches) of CP. Since everyone has had a limb fall asleep, they can easily grasp what it might feel like if multiplied a hundred times. They can also understand that we would be able to think of little else in such a condition. However, dysesthesia is a MIX of such quality that the human imagination cannot grasp it. They must either take our word for it, or launch off into some lame, insensitive discourse about placebo and how much it could help us. Dysesthesia mixes burning, cold, wetness, and several other negative sensations along with enough creepiness to freak a person out of her mind. We mean this literally. The phrase is not figurative. When we say “Out of her mind” we mean just that.
There is one slight inroad into dysesthesia. C fibers have a little voltage gated channel which opens up to calcium currents when the nerve is sensitized. This channel is the Transient Receptor Potential Voltage gated channel, or TRPV-1. There are lots of other channels in pain nerves, some of them VERY effective at creating pain, but the nice thing about this one channel is that it seems always to be involved in burning dysesthesia. It used to be called the Vanilloid-1 channel, but vanilloids include marijuana, so to give it more respectability it was given a scientific sounding name with no taint.
Even more conveniently, there is a chemical, capsaicin, which opens the channel. This feature means anyone who has more than a casual interest in what CP feels like can experience ONE of the symptoms in the MIX of CP, the burning. Capsaicin has made several very important converts among the neuroscientists to the reality of dysesthesia. We thank God for putting the little chili pepper on earth from which capsaicin is extracted. Without it, we would still be lectured to death on our “malingering”, and the Wizard of Oz power of placebo.
There is an even more powerful opener of the TRPV-1 channel, which comes from a cactus, a worthless little dome of a thing which is found at the margins of the Sahara desert, where it is avoided even by camels, who will eat just about anything when hungry enough. This tough little cactus just happens to manufacture resiniferatoxin (RTX), which is a nuclear force against C fibers. (Thank you God, Amen.) It would appear God did not leave us helpless, but merely under the necessity of finding a cure for central pain by the sweat of our brow. Apply a very slight touch of RTX to a pain fiber of the C variety and the cell dissolves so rapidly that the person feels no pain, or only the very slightest touch of burning. The neuron is dead within twenty seconds. Human trials are expensive. Given our desire to take travel photos of outer space, and build government buildings, the money is not going to be there for some time.
The NIH/NIDCR in Michael Iadarola’s lab, which developed RTX, has not used it except to inject prior to extraction of wisdom teeth, where RTX prevents the sensitization which usually accompanies inflammation. RTX has also been infused into bladders to stop neuropathic bladder pain, but as a remedy for central pain, we are years away, or should we say millions of funding dollars away from making that happen. RTX would probably have to be applied individually to every dorsal root ganglion in the affected parts of the body, but the neurosurgeons should be able to work that out. After all, they are supposed to have the hands of a god, even the neurosurgeons with the brain of a pea who still don’t know central pain exists. For them, the pain world is the pain world the average person knows about. Their medical education taught them NOTHING about how nerve injury pain feels.
In the meantime, we will still continue having to show up at the pain nudist camp with lots of clothes on. There are parts no one can see, even when the examination gown is pulled back. We are there in the congregation of the suffering, with a little bit of skin which can be acknowledged, but the strange growths covered over by the blindness of the observers, which conceal the most awful parts of our pain, will remain invisible until they are slowly revealed in rats. Then, the professionals will pull up the garments with their tensor MRI machines and find to their horror that there are those same awful ugly pain parts that they had found in SCI lab animals. We expect a decline in lectures about placebo effect and painless soldiers in those days, and a growing awe over the truly hideous parts of us that simply must be excised, to ease the suffering of those who finally have the ability to see it. “MRI road kill” you might call it. By then, the geneticists may actually have found a way to turn on the gene factories which produce pain exciters so a scientist can REALLY see what central pain feels like. What an idiot!
We are all at the party but there is a lot more of us there than anyone imagines. Capsaicin expands the imagination, but most cannot imagine deliberately injecting something that would hurt.
As to our own philosophical and religious marvel that God would leave us on the earth in terrible agony, we can only refer back to the collective benefit idea. Mankind will one day owe us a debt for having exposed the evil. They will not have to fear it for a cure will have long since been developed. And as for us, God will make it up to us, hopefully by blotting out not only the sensation, but also the memory of having suffered for so long and shed so many internal tears. Although submerged in terrible personal evil, we are part of the collective good by which mankind improves.
We did learn a little patience, while we were suffering the anger of our loved ones for having to put up with us and what we could NOT do, although their eyes told them we could if we only tried a little harder. They do not thank us here and they may not thank us there. Perhaps those of us with CP will pause eventually to recognize and honor those who played a part in our avoiding other problems, due to an awareness of how thankless such a role is. As we all become aware of the contributions former generations of sufferers of all variety have endured to make our life better, we may find that that the best way to forget the terrifying pains of CP, which not only sharpened the horror of pain, but WERE that horror, is to remember that we probably survived childbirth, TB, polio, leprosy, and other ghastly illnesses, because somebody somewhere suffered.
We act out our part in this play we call life. It seems an impossibly insignificant part, but when you think about it, what is there to be prouder about than that we helped deliver humanity from nerve injury pain in the future times? We got to be weird, they get to be free of nerve injury pain. Is it a fair tradeoff? No, but we are all hoping for a heavenly reward far beyond what we could possibly hope to have merited by our pathetic lives, so fair is not what we really want. A reward for enduring well has been promised. Hopefully that mansion in the hereafter includes a pool. I really like swimming pools, or maybe even a really nice beach. Or maybe a chance to visit with loved ones in peace, too much to hope for really, Perhaps I really will forget the suffering. Maybe heaven cannot be imagined at all. Maybe heaven will be as nice as central pain is bad; perhaps even nicer. That would be something, wouldn’t it! Beyond words, just like Central Pain.
Be not afraid nor dismayed…for the battle is not yours, but God’s. 2 Chron. 20:15