The tremendous language gap continues to be a problem in central pain. Even using sign language, which we think happens in some cases of suicide (see prior article), does little to bridge the information gap. Rather, it seems to convince scientists that CP subjects are not “quite right” and their pain largely imagined. We still have only the little CP rats, chewing off their limbs, to evidence that Central Pain is unspeakably cruel; and who pays attention to rats? Hence, matters remain literally “unspeakable”, and the evil continues.
With the realization that pain chemistry is not just imaginary, the mini-explosion in pain research has revealed central changes in MANY conditions, for example, irritable bowel disease. The term which encompasses these changes is “central sensitization”, which is vague. No one can really define it. Would you think it would be bad to be centrally sensitive? Never has such a delicate term been used to describe such crude malfunction. And of course, “hypersensitization” sounds unthreatening, because it is just more of what sounds quite positive, being “sensitive”. When I say I have central pain and hypersensitzation, you may likewise conclude that I am just a sensitive kind of guy. What the…. Where did this language go wrong? Someone left out a term which needed to be included. Perhaps it was “ghastly”, “killing” ….definitely something conveying magnitude. This is hard since the scale for chronic pain ends well below where CP operates. “Serious pain” won’t do it, since the TV ads for tension headache have already coopted that term to show sympathy with the consumer and his/her problem.
“Neuroinflammation” and “neuroimmune synapse” are two new related terms which sound good, but were meant for intellectual communication, not to convey suffering. Unfortunately, the realization that inflammatory chemical changes are almost ubiquitous in disease dilutes the use of “inflammation” in explaining why fatty acids really burn in CP. A diseased heart even puts out BDNF, so what should it matter if CP patients are up to their thalamus in BDNF? Science seems to lose sight of quantity when it explores quality. This makes it harder to speak of central pain, for now.
Gravity is the pull of the earth on us (plus lots of other things). However, using the word “gravity” is not sufficient to describe what happens when you fall off the Empire State building. It is pretty bad if your calling the central pain experience “severe pain” DOWNGRADES it in the mind of your physician. “Oh, “severe pain”! I know exactly what you mean. Have you ever been to the dentist? Nothing, and I do mean NOTHING could be worse than a root canal.”
“Pain” is too much couched in terms of black and white. It is about as descriptive as the grunt of some cave man, homo gruntus, who hasn’t discovered language yet. You either have pain or you do not have pain. That is about it. All you pain people are pretty much alike and pretty much require the same treatment. Here is what the answering grunt sounds like when your doctor uses it, “Some tylenol#3 should do it. Not too many. Don’t want the FDA knocking on my door. Those Dirty Harry silver barreled .358 magnums their agents carry scare me to death, so PLEASE don’t ask for any refills!” We could stop right here, and probably should. The grunt is not going to become any more articulate, we warn you. Medicine hasn’t evolved that far yet. The opposing thumb of pain measurement has not come into being yet.
Now, let us analyze the “pain is pain” idea. Everyone dies. In fact, you begin dying the day you are born. Aging begins immediately. You are already dying. The telomeres at the end of your DNA begin to fall off, to be expended, and the cells set a course for death even as they come into being. However, to say that everyone is the same because all are in various stages of dying is stupid.
The point is that some stages of dying are very advanced, in fact, fully realized. We call the early stages of death, “LIFE”. The early stages of central pain are called, “severe pain”. Does this register?
All pain patients are NOT the same, at all. I go the the dentist. I hate it, but almost immediately, after I take a few breaths outside, I put it behind me. Did I mention I really HATE going to the dentist. Something lingers today from childhood and that chatty, terrifying, small town dentist with the huge reusable syringes in the tall glass containers, (with matching jar for the long fat needles right next to it) which sat on the window ledge. When the assistant used the forceps to pull one of those giant T. rex meganeedles out and the only reasonable conclusion was that he would soon be pushing it into my gums, that office was the main place I did not want to be. By the second visit, I nearly passed out just smelling the alcohol. My mother, probably attractive to that old man, got the attention, which was just as well, so any tears which came loose went unnoticed. If detected, it would have humiliated me, even though I was in first grade. My eyes could not resist a glance at the long, sturdy, thick, reusable needles in those jars. BUT, bad as it was, that is NOT central pain. Nothing like it at all. THAT was dentistry. THIS is an inferno. I know the difference, but my doctors sometimes do not.
I admit that the suffering experienced in Central Pain is not all physical sensation. The same burning is there to greet me every morning when I awaken, after successive wakenings during the night. I know how poorly I did yesterday with the burning (not to mention the night just escaped from) and yes, that demoralization makes today’s pain a little harder to bear. This can go on forever. In fact it does.
Yes, Central Pain is part mental suffering. So what! It is also a mix of sensations, unlike ordinary, “legitimate”, “real” pain. I’m with the majority on that. Ordinary pain, real pain, is NOT central pain. One you are brave toward, the other stays at it until it has you, and then it really goes to work. CP does not confine itself to one place, like “respectable”, “proper” pain. It is greedy, blanketing, suffocating, parasitic, consuming, and as elaborate as your very own nervous system, with some scrambling and disabling of the regulatory mechanisms by which one would normally channel pain. I still need help, even if it destructures my pain resistance. The help I need is not ordinary either, not by a long shot.
To overcome my memory, I had taken as an adult to refusing numbing at the dentist. It made me feel I had grown up. Then central pain arrived, which took away all certainty, and raised the question “To what extent am I still alive?”. Somehow that question never came up in the dentist’s office.
Take away the pain first, and then work on the mental state, if you please. I do not know what people feel like who come back from the dead, but I would like to know. Central Pain is like housework with an inconsiderate husband. It gets annoying and then eventually you brain him with a skillet. Perfectly normal, and that is what you find if you look inside someone with Central Pain. Pain repetition not only brings conviction, it convicts YOU.
Talking has never helped. CP sufferers want pain relief. The thirsty man is not philosophical, he is thirsty. He wants water, not intelligent conversation on why he is letting his thirst trouble him, how oblivious to thirst others have been in comparable situations, pious proclamations that it was God’s will that he thirst (will some say he is a blasphemer whose complaint of thirst implies rainfall is not under God’s control?), and he certainly is not impressed by the observation that he is learning a great deal from being thirsty. He knows that as a living organism water is his right, and he would like some now, thank you please. We are of course speaking here of the person who is dying of thirst, not the child at bedtime. For some reason, people only confuse incurable diseases with God’s will, but not curable ones. Here is a clue, pious people, God’s work is to CURE pain. God IS love, part of which is to allow free agency so that we are real beings, not virtual ones. If you start from that assumption, you will get the picture.
As Riddoch aptly put it, Central Pain is a “pain beyond pain”. It empties you out. It destroys your identity. It may kill you. Dental visits did none of that, but they truly terrified me. Now that I must take large doses of Elavil, which stop salivation, I have become very good friends with my dentist, because CP treatment can end any thoughts you had of avoiding those “dental parties”, as my dentist teasingly likes to call the long sessions on my disgraceful teeth, my Elavil teeth, in the dried out Sahara I call my mouth.
If “Severe Pain” is not a good term to hand to the doctor, because he has heard that term until it has lost meaning, then what are we supposed to call it? TRPV-1 disease, N type calcium channel disease, NaV1.3 ion channel disease? What do we call it? Names can be a problem. Sometimes we just can’t get everything into them. Soho Square in London was built by the son of the famous Puritan, “Praise God Barebones”. That was just his nickname. His real name, given to him by a father who needed to get it all in there was, “If-Jesus-Christ-Had-Not-Died-For-Thee-Thou-Hadst-Been-Damned-Barebones”. Maybe we can think up something like that which lays out Central Pain. “Because-you-have-central-pain-you-are-damned-barebones”-Syndrome. That was rather good, actually. Maybe we are onto something. The CP rats at least will understand, once we get the translation worked out, of course.
Everyone with nerve injury pains finds the description of central pain rather familiar. They may conclude they too have central pain. This also adds to the problem. Now we have “central sensitization”, which sounds very much the same, but is nowhere close to CP. As links between inflammation and pain are discovered, and the neuroimmune synapse is more investigated, the name “Central Pain” will be even less meaningful because the mechanisms will become confused with conscious symptoms. Because communication breaks down, sometimes patients kill themselves to send a message to the doctor that CP was the big time. Death is the lowest form of communication. We hope we can come up with something better, quickly. The bottom line is that we are really, really in severe pain, so much so that it cannot be put into words. Still pretty inadequate as a description, isn’t it. Here, have some capsaicin, the great communicator.