Toward a more precise pain language, or should it be less precise?
This site has done more than its share of agonizing over the problems with language. Words are a vehicle, but also a trap. As soon as we adopt them or learn them, and others have agreed, we think we have described truth, when we have merely created a word.
Psychologists argue that babies do not think, since thinking requires words and babies have none. Irrespective of thin evidence on both sides of this debate, we think babies do at least have some way of assembling what is true for them, whether or not they can “think” about it, and without words. What IS certain is that words become very, very powerful as development progresses, and are necessary for the brain to operate as it should. The brain was organized with words in mind, even to the point that different languages go to discrete, specific parts of the brain, as if those parts were placed there for the time they would be needed.
The question here is whether words really provide truth, or whether they are just rules we adopt for ourselves, with truth somewhere down the road, AFTER we have come to analyze and to measure whether the words tell the truth or not.
Things in the universe do not automatically confine themselves to the English language, nor to any other language. This includes body parts. In the Navajo language, the shoulder includes the upper arm. On one occasion this author missed the location of a fracture because the relevant area was omitted from the field of the xray film due to how the two cultures see the body as being subdivided.
The Navajo rancher, who spoke no English, told the translator he had broken his “arm”. However, in English we would have called it the “forearm”. It is neither true nor false that the word “shoulder” should inherently refer to one specific part of the body. It applies to whatever we say it does, by convention. One should always be aware of the imperfection of language. Nowhere is this more of a problem than in central “pain”. This condition, clearly not of the same species as “normal” pain, must nevertheless operate under the same assumptions and dwell in the same verbal neighborhood as normal pain. Assimilation is not possible, however, because central pain is NOT ordinary pain. Word compression, making everything fit onto the Procrustean bed of a word, is not unlike trying to call a headache and brain damage the same thing.
It would not be acceptable for clinicians to call brain damage a “bizarre” headache. DIFFERENT issues are raised between the two and features present in one are entirely missing in the other. Nevertheless, among neurologists, it is fashionable to say that people with central pain dysesthesia have “bizarre pain”, but what does that mean? It is like people from America saying that the British speak with an accent. Hello! To the English, Americans speak with an accent!. Maybe central pain is the real deal but ordinary people are usually spared its torments, being given only sips or portions of pain. Protopathic pain, the main component of central pain, is after all the sensation which persists in pain nerves after all other sensations have been lost. One could look at Nature as concealing or covering REAL pain in order that humans can use portions or aspects of it to get the job of sensory warning done.
Central pain is no more “bizarre” than ordinary pain. It is what it is, but the failure of language gives doctors no other choice except to say that it is bizarre. This is unfortunate since it makes dysesthetic burning subject to question, when in fact it is more real than normal pain because it is more painful, ie. causes more physical suffering, in more ways. If the average person experienced central pain it would be severe enough to cause them to stop whatever it is that is evoking the pain. The problem is that no matter what the patient does, the central pain does not stop. Even if the body were amputated below the level of injury which originally generated central pain, the thalamus would still be beset with acids, and tormented.
Let the average person imagine pain as they will, they simply cannot conjure up what nerve injury might feel like, UNLESS they allow some experiment, such as injection of capsaicin, which will give them a tiny taste of central pain, briefly, and in one very small area: or, they can put on a blood pressure cuff at around 250 mm Hg and start squeezing a rubber ball hard with the compressed hand, which deprives the nerve of oxygen and causes it to begin producing sensations which resemble what a damaged pain nerve manufactures.
That more have not done these steps is regrettable, particularly among clinical pain doctors. Self testing for the sake of understanding is MUCH more common among PhD researchers, who otherwise could not read the pain literature with actual comprehension. There is no synomym for “salty”. You must taste it. Likewise, there is no synonym for the mixtures of suffering which make up the central pains. You must feel it to get it, and words will only mislead you, just as they would if one attempted to verbally describe salt to someone who had never tasted it.
The TPRV-1 channel, the one at which capsaicin acts, simply cannot be appreciated until one has injected capsaicin to open the channel up. At academic meetings, the PhDs ALWAYS understand what the big fuss is from central pain patients. The clinicians rarely do, simply because they have never used capsaicin, never done the rubber ball maneuver. They have looked past the inarticulate CP subject, and hoped for better things, even if it is the similarly vague “placebo effect”. One can imagine placebo by thinking of gullibility, but one cannot imagine dysesthesia by thinking about pain.
Self-testing should of course be a requirement for any neurology residency or any pain fellowship, but instead doctors think words can get the job done. This is asking words to write checks which they cannot cash. WORDS are constructs, not necessarily reality at all. Consider the word “ju ju”, or witch doctor magic. It certainly works on those who believe in it, but for those who do not, it is nonsense and not expressive of any universal truth. Words then must have a context, and no real context exists for understanding central pain?
What then is the problem with calling the agony that is central pain, “central pain”? It is that CP is not pain. It is an agonizing physical sensation, but it is just NOT like ordinary pain. Normal pain is well localized, easy to grasp, of a distinct quality, and linked to some event. Central Pain is none of these things. It is misleading to call it pain, yet we must, in order for the public to even have a hint that we mean business. Riddoch called central pain “a pain beyond pain” and that is about as good as anyone has done. We need more capsaicin and rubber balls, and less disinterested shrugoffs of the “bizarre” pain. Time to leave the flat earth society where things make sense and realize that the world is round, which makes no sense at all, UNLESS you happen to know about gravity. Similarly, Central Pain makes no sense at all UNLESS you happen to know about perineural acidosis. It would be more correct to call central pain counter-intuitive than to call it bizarre.
“Bizarre” things are considered to operate somewhere at the margin of truth. Central Pain dysesthesia is not actually bizarre anyway. It nicely resembles the injection of acid right under the skin. We doubt the blindfolded person could tell the difference, except it is impossible to suddenly inject acid EVERYWHERE, in the blanketing manner of central pain. Many know what acid feels like atop the skin, but do they understand the inflammatory quality when it is injected beneath the skin? Since all injectable materials are pH balanced to match the normal tonicity and proton (H+) level of human flesh, almost no one understands the experience of acid injection. Even if they did, the rapid dissipation of injected materials would not afford an appreciation of the CONSTANT burning of central pain.
It is probably allowable to say that central pain feels like your skin (body surfaces really, since the mouth,eyes, and sinuses are included) has eaten a chili pepper. What cannot be conveyed is that it feels like your ENTIRE skin has eaten a chili pepper. In other words, the scope of the dysesthetic burning raises the suffering to a level that makes you want to go screaming into the night. You can’t scream forever, so you simply sit, disintegrate, and then turn into something that, once again, cannot be described. There are no tears, there are no words, and perhaps no humanity which is recognizable as such. This, and the other pains, such as lancinating pain, which are additive to the dysesthetic burning is why central pain is considered to be the worst pain state known to man. It would clearly be insensitive to ask someone with CP to perform as normal individuals do. In fact, it would be much more sensitive to attempt to accomodate to THEIR situation, just as we yield on the sidewalk to a blind person. Do not require someone with CP to be of a state of mind to listen to two bit philosophies, such as how lucky they are not to be totally paralyzed, or that their pain is God’s will. God did not will central pain even onto Hitler, so what are you saying to the person when you say that?
John Locke had the same criticism when it came to revelation. He said even God could not verbally reveal anything to man except truths that were made up of bits and pieces of language that the particular person already knew. Scripture was difficult because it was derivative. Words are very much like the lawyer who hopes to cram all events into one “yes” or “no” question, in the hopes that any contrary information can be ignored. The actual, real experience of someone like Moses must have been truly overwhelming, but the only thing he had to communicate it with was words.
This is why all religions accept that there must be a spiritual experience to grasp spiritual truths. It would be unreasonable to think man had already created the right words to describe what it felt like to be in the presence of the Divine Being, words ready and waiting to help man understand what he had never understood before. Words just can’t do this. They are implements of conveying information, but unless one could be a prophet himself and God placed in his heart that power of prophetic understanding, only then could he hope to derive from Moses’s account, what the experience of hearing God’s voice might be like. In such a case, God would probably simply speak to the prophet personally, efficiently bypassing a struggle over puny words.
Locke said when a prophet reduces his experience to words, it contracts the matter already, and when another reads those words, the words will have a slightly different meaning. Thus, all revelation is derivative and therefore requires of the reader or listener to put himself or herself in a state of mind to be receptive to any feelings God may wish to instill as the scripture is read. At the barest level, the scripture conveys only information, but surrounded by the power of spirit, the information becomes wisdom.
The same thing is true outside the area of revelation. This is why it is so difficult to read ancient Egyptian texts. A literal rendering might say something like “The flood of Erebus floated the lotus barge along the way of Osiris, carrying the phoebus of flame unto the headpiece of sacrifice.”, but what does that mean? There has to be an ability to identify with the sense of what language was supposed to convey. The public does NOT have words ready and waiting to describe central pain. They DO have capsaicin, but no one seems interested in self testing to figure out what is going on, least of all the very persons who evaluate it. This makes pain doctors posers. Sorry guys, but you know it is true. Get out the syringe and prove us wrong.
Our generation is bombarded with information. One could not hope to read a fraction of what has already been Googled. In fact, the internet is producing more information in a single day than could be assimilated in a lifetime. However, this material does not necessarily translate into any wisdom at all. T.S. Eliot wrote in his famous poem:
“Where is the wisdom we have lost in knowledge?
Where is the knowledge we have lost in information.”
Dysesthesia is a word that communicates information. It is too vague to convey any knowledge and it certainly cannot provide one any wisdom. Even the capsaicin test, while it can infuse a degree of wisdom, fails to display the power of central pain, because capsaicin only yields one little portion of the sensation, lasts only thirty minutes, and is limited to the area of the injection. Real central pain is vastly more complicated, and clearly more expansive. Capsaicin is as similar to central pain as a poke with a piece of straw is similar to being hit by a train. Still, it is unmistakeable that those PhD candidates don’t like capsaicin. In fact, some of them are stunned to perceive nerve injury pain as something new, really new and they never forget it.
In ancient times, man was very simple minded. Just like today. At one point, long before we knew matter and energy are interchangeable if we go to a small enough level, philosophers (scientists hadn’t been invented yet) concluded all the universe was composed of the fundamental elements of earth, wind, fire, and water. Just a bit oversimplified, don’t you think.
“Earth” is hopelessly oversimplified, although the others were more identifiable, yet none of these four words actually said anything about fundamental elements. There are none. Whatever is fundamental in the universe can be dissected into a thousand things MORE fundamental, until eventually we are over into electromagnetic radiation, and that is not fundamental either. If you doubt this last proposition, kindly write in to us what “energy” is , especially the “dark energy” which scientists say holds ALL the universe together. The scientists, who have no idea what it is, will be grateful for your singular insight. Thus, you see that words are just sounds, assigned a meaning, which may or not have anything to do with truth. Our words are devices, not divine pathways to ultimate truth.
The physicians of antiquity were no better. For them, the human body expressed four, and only four, “HUMOURS”, ie. liquids, or essences of life. The humours were blood, phlegm, bile and choler. For the really sophisticated there was a differentiation into yellow bile and black bile. Black bile was melancholy. That is where many of today’s physicians place central pain, in the “black bile” category. They are of course, utterly stupid, having never read nor studied the very elegant results of the proteomics columns which reveal what is actually in the dorsal root ganglia and dorsal root of the unfortuates with central pain.
Religion is not much better off. Bloody and quite possibly endless wars have been fought by man over what some ancient text supposedly says. These texts are of course, WORDS, and without some bestowal of the original spirit cannot possibly be read accurately. Religious leaders have always acknowledged this, especially the givers of scripture. For example, in John 6:63, Jesus says, The words that I speak unto you, they are spirit, and they are life.” What is he saying here? He is not saying his words are actually little creatures of spirit which float around as some sort of vague, undefined life form. He is saying that his teachings lie in the spiritual domain or realm.
He is also NOT saying that by themselves the words say anything. In fact, he is saying just the opposite, as in, “Try to understand what I am saying without being to some degree spiritual and you will miss the point.” That is what the statement means. There is little evidence that the wars men have fought and are fighting are going to resolve or explain what was meant in times past. That must be achieved through being spiritual. Atom bombs do not explain spiritual truths. Spiritual living might.
Something resembling a war is fought between us and our physicians, We have the condition, they have some words from a textbook. To us, central pain is everything, the struggle between life and death. To the doctor, CP is a complaint, to which they must assign a pill, or a series of pills, which might satisfy us.
Which one trumps, the acid in the neuron or the diploma on the wall? Let capsaicin settle the contest. Like the sheriff in the western who throws down his gun and beats tarnation out of the bad guy, “mano a mano”, let the doctors throw down their degrees and face the capsaicin, man to man, just we do every second of every day and in lots of anatomical locations the doctor hasn’t even thought of yet. We would be happy to suggest a few skin areas likely to give a memorable experience if the doctor is oversold on hysteria, malingering, bad attitude, and the placebo effect, to provide a little extra oomph to overcome the diehard pain skeptic.
By contrast, Jeff Foxworthy says, “You might be a redneck if your method of wart removal involves a firearm”. To express the converse, you might be misled if you think placebo effect will prevent capsaicin from burning, especially in certain areas. If you fire into a flock of geese, the one that flutters is the one that has been hit. If you brandish a syringe of capsaicin, the one that starts sputtering about “delusional pain” will back off immediately. For some strange reason, he just doesn’t want to try the capsaicin.
When a scientist injects himself with capsaicin, or performs the pressure cuff/rubber ball routine, he is going back to the original source, where he can become as much an authority as the person who first wrote the word, “dysesthesia”, also known as “protopathic pain”. Protopathic means the FIRST PAIN (most durable pain) of diseased or injured nerves. Being fundamental, it seems that “experts” in the field of neurology ought to attempt to understand it. Giving shotgun administrations of various anticonvulsants, analgesics, and blockers of whatever nature will NOT inform the physician what he is dealing with. Dysesthesia spread across the whole body is a killer. Few can face it. No one can describe it. It is its own thing.
And so we say to the doctor:
“The PAIN that I speak unto you, is in the nerve injury realm, and it is death”. Think about this the next time I come into your office and you consider what I am saying, what I am feeling, what I am enduring with burning dysesthesia, remembering that central pain has other agonies nearly as impossible to face as dysesthetic burning. This approach, this awareness of the poverty of words, might just change your point of view. And then again, there is always capsaicin. If you are really interested to feel the lancinating pains, we could hook you up to some battery cables, but we will be satisfied if you merely lay a little capsaicin just under the skin. We will become “brothers in acid”, and you will never again tell us it was God’s will.
Capsaicin is an extract of the capsicum peppers. About two hundred times as powerful is its chemical cousin, resiniferatoxin, which comes from the Euphorbia plant, a small domed cactus, found in Morocco and the Western Sahara region. Resiniferatoxin, or RTX, also opens the TRPV-1 channel, which exists in C fibers (sensitizers of all varieties of pain neurons). RTX is so powerful that it kills the pain neuron almost instantly by allowing calcium to flow through the TRPV-1 channel so rapidly that the membranes of the pain cell “melt”. Those of us who have suffered central pain believe the little demons deserve it. DIE pain neuron, DIE!!! This process is so sudden, occurring in about twenty seconds, that the patient injected with RTX feels no pain. RTX is presently used only for peripheral nerve injury pain. There is currently no way to inject RTX into the cord to kill central pain, mainly because we know so little about the cascade of pain chemicals. We know what is there, but we do not know what we can safely kill without harming the patient. Pain is linked to memory and many other things, so progress has been slow in developing a way to exploit the power of RTX. Pain treatment of central pain is now focused on blocking N type calcium channels, which are found in pain nerves. Oral blockers of N type calcium channels are being developed.