Nutty propositions of therapy for Central Pain point to many hints, suppositions, and ideas about how being nice will make the bad owies go away, but they are too often just exprsssions of doubt over the severity of the pain. If CP were understood for what it is, a serious flood of pain chemicals in the neurons, maybe people would stop thinking that condescending theories of causation, condemnation of helpful spouses, and the like are anything but insulting and ridiculous. And just for the record, this author would not be wasting valuable time writing at this website, unless central pain were really serious. There are many more things which would be preferable to do, but the plight of the CP subject is a matter that must be dealt with.
We have had to write a number of articles on how to respond to various ideas which disparage pain. What is important to remember is that these claims rotate around one group of people, those with hypochondriacal tendencies, but fail to come to grips with the possibility that in others, namely us, the genetic chemistry is highly disordered so as to cause unbearable torment. It is a prejudice, of course, to assume CP people as a group have some negative characteristic. It is like saying that certain races are lazy because some members have been identified who are lazy. Or, it is like saying one race is trash, because certain members are unsophisticated, etc. All the hypochondriacs in the world do not say anything about Central Pain. They are wacko and have normal chemicals in their dorsal root ganglia. We are hyperalgesic and have acids in the DRG. Get it?
If you adopt a monolithic attitude toward claims of disabling pain, you will lump the nervous together with the damned. As soon as one declares that only members of a certain race can excel at a given sport, along comes someone of a different ethnicity to explode the myth. Cultures may embed conflicting idealogy, propaganda can engender hatred, but individual humans are basically the same. Through all the wars and disputes and rumors, mankind is coming to realize that the human imagination is the same the world over. This concept is behind the whole idea of language. Pain has a particular problem, in that it gives no obvious, easily detectable signal that it is present, except to the pain sufferer, who couldn’t have clearer awareness of a noxious physical experience.
The tongue clucking, condescending patronizations about pain have nothing to do with hard data, and certainly nothing to do with science. One actually needs no science to prove that pain exists. The problem comes when on particular group states that the pain does not stop, or that it is worse than being paralyzed, which they often also are, to one degree or another. AFter all, they have damage to the Central Nervous System.
Why would someone who has buckets of sympathy over cord injury invent some thin, distracting excuse for you to take notice? Are you an expert on that? There are more than one thousand cord injured people with Central Pain in the survey data. ALL of them consider the pain to be more disabling than the paralysis. Is fabrication of pain a trait of the paralyzed? If normal people were saying this, perhaps you would be justified in passing by without noticing, but this is a very select group, posssibly the least likely group on earth to concoct schemes of disability. Do cancer patients make up stories about their flat feet? Do the elderly obsess about the tooth fairy? If someone sitting in a wheelchair says “I cannot stand the pain”, what gear does your mind wind up in? Can your brain move to the sensory realm while your eyes are fixated on the loss of motor function?
Do you think those who have lost feeling cannot burn via a genetic malfunction in the injured nerves? Do you understand GAIN in the dorsal root ganglion and brain when expected sensation is not received, through ihjury? Do you think our determination to heal always results in positive consequences? If so, you need to read a little about the progressive deterioration of injured nerves, and injury spread over time by vasoactive chemicals. You need to read about divers who recover from the “bends” in hyperbaric chambers, only to become enfeebled several years later from the accelerated death of nerve cells.
If you lose a thumb, the plastic brain can reallocate its thumb connections to the nearby finger (not well, but partially). If sexual function is destroyed in pelvic parasympathetic nerves, it is possible for the sympathetic nerves in the lumbar plexus to begin to play a role in that. What if the pain system is injured. Could touch possibly become misallocated, so that plain touch conveys pain? Is this balderdash or the revelation of a terrible condition? That would not be like normal pain would it? You read the story of the Princess who could feel a pea through several mattresses, but to find similar claims for ordinary touch is really out there. It is preposterous and could never happen, or else it would be just too strange. You might even say such a thing is bizarre. Your calling it that will not diminish such pain on iota, nor will your association of it with fiction. We are not princesses but you can break our spirit simply by subjecting us to occlusive touch. It is real. It is “pain beyond pain” as the great neurologist George Riddoch stated regarding Central Pain.
You do not have the luxury of saying maybe we are having a little bit of pain. We have told you it is ghsstly and unbearable. You must either put us in the same category as someone who says they are a poached egg, or you must stop and listen, and consider the possibility that torture is being exacted on the innnocent. If you trivialize real pain, there is something monstrous about it. If you try to achieve acceptance and understanding, perhaps we can find a way to make it through another day, or even the rest of our lives. Your choice. Laugh or listen. Which is it?
History is full of misattributions of behavior, from oddity being attributable to being a witch, to special good luck by virtue of being twins. These ideas, when they creep into society are known as superstitions, and there are plenty of pain superstitions. Frequently, the superstitions rise to the level of outright judgment and discrimination, which is a terrible thing to get started in the care of the ill.
Let us state it for the record. Hypochondriacs exist. Everyone has their little health fears. I may fear catching a disease from the toilet seat, and you may fear the salad you eat at the restaurant has something unspeakable in it. These things are possible, but the vast majority of salads are okay, and we all use the toilet, despite the possibilities. What is wanted is reasonable caution, not hysterical universality of fear. We are not going to wear out the idea by beginning to speak of “algophobia” but honestly, looking at much of the behaviorist literature, we can hardly imagine a stupider, more narrow minded bunch.
Although pain is invisible, and although there are lots of hypochondriacs in this world, the idea that the nervous system is indestructible, and could never of itself malfunction, is absurd. There is absolutely no doubt, and provable data which show that if one injures the central nervous system to an intermediate degree, the genes frequently become stuck in the routine of pouring out pain exciters, which then begin to saturate the pain tracts and sensory areas, such as the dorsal root ganglia, VPL/VPM nuclei of the thalamus, dorsal horn of the cord, etc. That much is well proven, and not really the subject of dispute by anyone with even a modest familiarity with the liteature. What IS under dispute, is what the affect or peception of those pain exciter chemicals, perineural acidifiers, might be.
One can, we suppose, argue over whether the resulting pain is terrible torture, modest discomfort, or totally absent, but that will not change the presence of such chemicals in the pain pathways. These chemicals predictably and measurably cause pain signal in isolated nerve preparations, and they are present in large amounts in CP, as are the abnormal fetal ion channels to process them, and the inhibitory control exercised by the chloride ion on the neuronal membrane is disabled by lack of the proper protein carrer. So what is the problem with accepting that PEOPLE who have this are in pain, even if the pain they describe is different in some respects from normal pain?
One can argue, for example, that thiamine deficiency is not of much consequence, being a single molecule, occupying only a paragraph or two in the textbooks, but when wet beriberi begins to swell the body and blind dementia sets in, one may have to modify one’s opinion about the significance of tiny molecules. Most of the deadly venoms and toxins are laughably simple in their action. Spider venom, for example, may do nothing more than make a flaw in the membranes that enclose neurotransmitter vesicles. Only a handful of people even know what such vesicles are, but the bitten child can become very dead. When CREB, Nav1.8 ion channels, PKC, NMDA, fatty acids, TNF, and other pain exciters begin to be overproduced and to saturate the neuronal environment, I may choose to say I don’t believe the person or lab animal is having any pain, but there is the problem that the animal begins to try to chew off their legs, and the human begins to develop a desperation to seek out pain clinics, to find SOMEONE who knows a treatment. Since the workup at a pain clinic is fast approaching nine thousand dollars for the initial evaluation, it seems harsh to assume the person is just trying to bother people, force them to accept something that cannot be seen.
Should the presence of hypochondriacs alter or impact my response to a claim of disabling pain? Yes, one must always first consider that certain people manifest odd medical responses to anxiety or depression. But it is completely unscientific to atttribute ALL pain to hysteria. This is particularly so when it is rather easy to induce the state of central pain ih lab animals by merely damaging their cord, either by laser or by mechanical strike.
When we see the nonsense pain solutions being thrown out, such as expensive group discussions sponsored by hospitals where nonphysicians pass out teddy bears and hold hands, where some middle aged lady in leotards intones about yoga, we say “Get real”. REAL pain is nothing like that. Central pain is very, very serious. There should instead be counseling for patient and family on the need to reduce stress in the environment and to realistically trim expectations to a level that might be possible to accomplish. The trimming may have to be severe, central pain is the most severe pain state known.
The burning is not infrequently too severe to permit the wearing of clothing on affected parts, which is most frequently the ends of the extremities, the center of the face, and the genitals. Visceral CP has an array of its own with burning, nausea or cramping in bladder or gut. Muscle CP makes movement painful, and also sitting still painful. This is because a normal human feels pain from overexertion and also from confinement in one position, both types of pain being hyperalgesic in many CP patients with muscle pains. We could go on and on about it, but then our doing so is what has put you off in the first place, so we will just remind you our genes are pumping out pain exciters and let you see how you feel about that. Memory and concentration are also impaired. Still think we could be competitive in the marketplace? If the injury is cervical, it is possible for the entire body to feel the burning, so it doesn’t take too much imagination to realize these people are not reeking with happiness.
Have people forgotten what pain feels like??? No matter what theories or charges are directed at pain therapy, no matter how much talk we hear about psychology, sociology, weakness, or wickedness, the real problem is that they don’t believe we actually have pain. Why do they not believe it. Because they cannot see it. If you cannot see over the horizon, then to you, the earth is flat. This viewpoint does not alter the broad arc of the earth, but it does give shape to your opinions. Now that biochemists CAN see, and CAN measure the deluge of pain exciters being manufactured by the protein factories in the genes, it is too late in the day to attribute severe central pain to psychological forces.
First of all, no one really knows what “psychology” is either. What does depression look like chemically?? There are some clues, but we know more about mysterious pain than we do about depression. We can talk about serotonin, etc and say that explains depression, but serotonin is also disordered in nerve injury pain, so is it legitimate there also??? They speak as if depression were definable, legitimate even, but in terms of the chemistry, they are only just getting there. One unknown cannot circumscribe another unknown.
Weir Mitchell, the Civil War surgeon who first wrote on the difference clinically between injury to the CNS from injury to peripheral nerves, certainly had his share of cowards to deal with and fake injuries, from that time of face fo face warfare and an unpopular draft, but he never once attributed pain of central origin to psychological causes.
Dejerine knew hysteria was possible and certainly had his share of treating hysterics, but he declared it was EASY to differentiate CP from hysteria by taking a simple history. The hysteric would report total pain or numbness in an extremity. Those with CP always found such pain graded, more centripetal, focused at the ends of the extremities, and worst in the areas of the sensory homunculus where nerve endings are known to be most numerous. Since the physician KNOWS the sensory homunculus, it would be easy to expose an hysteric. Dejerine could do this in Central Pain before there was the slightest evidence biochemically that the genes were pouring out pain exciters. The behavior of someone with CP is NOT hysterical. They don’t have time for the self indulgence of hysteria. They are too busy trying to cope with the pain, to stay alive. Roussy, Riddock, Bonica, Tasker, and others who studied Central Pain were experts in recognizing hysterics and hypochondriacs, and were skillful at testing for it, but none of these famous pain researchers found any problem sorting out those with CP. First of all, these people have some damage to the central nervous system. Secondly, the history of their pain is very characteristic. We don’t need a high powered neurologist for CP, a physicians assistant who has training can spot it easily. The problem is knowing which pains in CP are neuropathic and which are not.
No matter what dumb ideas about how to cope with pain are offered, no matter what silly advice about getting rid of the pain is thrown out, the REAL problem is that they simply DO NOT BELIEVE what we say. The real problem is the story the patient tells about unfamiliar mixes of noxious sensations. Let us put a little spin of strangeness on our pain and most clinicians are sure to put a lot more spin on it, spinning our terrible condition out into fantasyland, where the crackpots are free to give us advice, and not advice is more dangerous to the really sick individual than that advice coming from someone in a white coat. The medical profession has its oddballs too, just like pain patients have their adequate supply of flakes. It is really too late in the day for these arguments to continue to permeate medical meetings, with obligatory time given to those claiming to be “researchers” into hypochondriac pain. They have no criteria to identify the real pain patient, other than when they can see the knife plunging into the flesh or the blowtorch melting away protoplasm. That is derivative. They are not seeing pain. They are seeing something that in THEIR experience causes pain.
Unless they can see molecules, they should stop attributing Central Pain to hysteria. It is not due to anything more than genes which do not know when to quit. Everyone needs a little bit of pain chemical. We are a literal storehouse of them. The objections to our story of terrible pain is not really about the psychologists wacko theories of stress, etc. It is about something they cannot see. It is because of our claimin something huge, of which we can give no evidence. NASA learned early enough they had to have some visible evidence to gain public support for their programs.
We do not yet have pictures of the molecular ion channels opening to pain. However, with the methods of study which are available, the time for doubt is past, and the time for help has arrived. We want coursees in medical school on this, and we want the biochemists to learn the cascade of pain chemicals, not just the pathways for metabolism of thiamine. After all, the doctors will see lots of people with nerve injury pain, but they will likely NEVER see a case of beriberi in their entire medical practices.