CENTRAL PAIN IS NOT ONLY VERBALLY INCORRECT, IT IS ENCRYPTED, FOR LACK OF A VOCABULARY
The listener cannot make sense of Central Pain, and significantly, neither can the patient. The Central Pain sufferer cannot talk about Central Pain because she is describing a physical body which does not exist anywhere else in the world. It is a world where one plus one does not equal two, but something more like a negative ten thousand. It operates alien to the normal logic of cause and effect. It is an illness so powerful that it seems more real than the person who has it. Surely, if something so severe and debilitating exists at all, there should be little problem in finding words to characterize it, but they seem to be missing from the English (and every other) language.
If something is LIKE pain, then isn’t it most likely a lesser version of it? Perhaps some words for ordinary pain, watered down a little, would suffice? Why are these people so dumbstruck if their condition is so bad, one wonders?
Light touch should not equal agonizing pain, but it does in this upside down world, the evil closet where Alice endures and opens her mouth to attempt protest, but then is mute since no words are available. The pain itself is not contained in the vernacular, nor in any professional lingo, because the dysesthesia of Central Pain is its own quality of physical suffering and agony. Unfortunately, the magnitude of it ignores its indescribability and marches into the mind as an occupier, and far too often, as a destroyer.
In the medical world are noted those known as synesthetes, or people for whom color or some other sensed aspect is associated with a word or something else to which it should not be linked. In Central Pain, the ordinary experiences of light touch or temperature change elicit a burning so terrible that the word “burn” cannot encompass it. Indeed, the pain is so omnipresent that no stimulus at all is necessary for the dysesthesia to bore into the consciousness with an horrific power. The ordinary awareness of skin surface is fully sufficient to generate the agony and things only get worse as the experience of sensation progresses into something one would normally become conscious of. There are some born without the ability to feel pain, and there are others who can sense little else but pain–this is the experience of Central Pain, where the brain has been co-opted by the pain system. Pain can go bad in either direction.
We need to detect pain to avoid injury, and the brain has a surprising array of structures to detect and process it, to integrate and refine any sensory input to watch out for it and to integrate the message so that we know pain quality, location, degree, and can take the measure of the threat as well as know all about the sensation. So important is pain that the nervous system does not require brain processing for all pain, but even has a system to deal with it at cord level, shortening the time for a protective response. Around one third of the structures in the brain are connected the pain process and they really show their stuff in this terrible disease.
The person is shoved to the side and into a corner as the pain elaborates in an occupation of the awareness. The pain is not just present, it IS the person. By hijacking the thought process, it ignores human will and exercises executive function without regard to the organism which sustains life. It is a cancer of the pain system, as it were. Bravery requires choice, but choice is a function of the will, and when the brain itself orders suffering at a level higher than conscious choice, bravery must give way to confusion and despair. Fully developed Central Pain is the most severe pain state known to mankind, but the least understood. How does one understand something for which there is no vocabulary.
Central Pain is a dimension of the superficial sensibilities which should not exist, for which the divine alone understands the purpose, but like other evil is tolerated for some unknown reason. Central Pain is the executor of personal and isolated endurance by the sufferer, who will go it alone, behind a barrier which garbles all words, making the subject’s bizarre little room soundproof, or at least meaningless, in language as well as experience. It is pain so encrypted that no one will understand who does not have the condition. Those who have the condition find it so unusual that they are at a loss for words to describe it. Attempts to do so generally mislead the listener since the words that must be used are the words of normal pain and Central Pain is not normal. Normal pain occurs in response to an identifiable stimulus and has a specific location, but Central Pain does not, in the ordinary sense. The creation or distortion of the pain process by an injured nervous system does not mean the pain is less severe.
Light touch which causes pain should elicit that pain immediately, but in Central Pain, there is a delay. I touch you and twenty seconds later you feel it. Does that program? Does it sound like a human being? Not at all. It does not even sound like pain and therefore the vocabulary of normality, or reality, becomes a collection of loaded terms which precondition the mind so that understanding of central pain is impossible.
To comprehend, one would have to start at scratch with pain and reconstruct a framework with entirely different rules, and entirely different consequences. The comfort and signal of light touch would have to be recast as alarm, confusion, lack of sure location, and inconsistent responses where ambient temperature as well as pain not in the area touched are relevant to the degree of pain. Changes in temperature which are insignificant in mainstream reality operate as brutal bullies. The reassurance of clothing to deflect temperature change becomes an ordeal in itself, as one fights fire with fire. The word “fire” here is not to be taken allegorically, but rather neurologically.
It is therefore an exercise in frustration and blind ended muteness to attempt to discuss Central Pain with others. If words will not do it, you are not really talking. Those listening, be they doctors, friends, strangers, or even family, will not leave their preconceived truths about touch behind, let alone afford the significance of debilitating pain to the incidents of light touch. If you are going to use my words, you have to speak my language.
If one attempts to talk about central pain, he will add frustration to the agony. “The eyes are monopolists of the senses.” If you look like a human being, in the reasoning of others you are and must be a human being as that system is normally constituted, and that will be the end of discussion. If you wish to challenge reality, then you may proceed to discuss, but you will not be communicating. For that, you need a new vocabulary, with new rules, and that is a word too far for others to process and integrate into the conversation.
We only have the words we have, and if to retain the integrity of speech, such words must are properly canonized in their limits of meaning, the language will be preserved in its purity, but those who suffer will have been verbally annihilated, Central Pain is a condition which has been worded out of existence, except of course for those who must endure it.
Central Pain is the most severe pain state known to mankind, IF we can find words to make it known, that is. Until then, we may conclude as did an ER doctor in Michigan apparently did upon receiving Betty Lou Hamilton’s body (a Central Pain sufferer) that there is doubt if the woman had pain at all, her ten surgeries to try to relieve it notwithstanding. While arguably right verbally, this could not have been more wrong neurologically. A shame that imaginary pain, or at least non verbally correct pain, would cause a woman to take her life. Why not talk herself out of it, articulateness comprising reality as it does, apparently.
The most common verbal descriptor of Central Pain, by the hundreds surveyed by Dr. Patrick Wall of this site and by those found elsewhere in the medical literature, is “like acid under the skin”. Since the cytokines in the Central Nervous System felt to be responsible for Central Pain are in fact acidifying agents, the question arises just how far under the skin the acid occurs. It seems likely that although perceived near the skin, it is the acids in the nerve synapses which are really the culprit, including those in the brain itself. Injury to the central nervous system causes an outpouring of growth factors, many of which are acids related to the prostaglandin type of chemicals. Moving centrally from one synaptic relay to the next like falling dominoes, this acidifying response travels all the way up the nerve channels to the thalamus and nearby structures in the brain where pain is registered. Hence, the saying “Acid in the brain causes Central Pain”. The medical word for acidification in nerve structures is “neuroinflammation”. Something similar may be seen in PERIPHERAL neuropathy such as diabetic nerve pain, but when the injury is to the CENTRAL nervous system, one is talking about something occurring in the central pain apparatus, where truly fearful pain can result.
This “acid under the skin” is not the only Central Pain, with electric jolts or lightning pains (called “lancinating pain” in the U.K) also being common. Fully elaborated Central Pain has a steady state level of pain, known as “Spontaneous Pain”. With certain stimuli, such as light touch or cold, the pain markedly exacerbates–this being known as “Evoked Pain”.
The evoked pain is extremely severe if the stimulus continues, and may prevent the wearing of clothing, contact with bedclothes, or even movement. ”Burning” pain in the muscles can lead to near or total paralysis even with an intact motor unit. Muscle loading hurts, even for the mobile. The most common things which elicit greater Central Pain are light touch and temperature change, particularly cold. Only lancinating pain seems familiar to the CP subject, while the burning is not familiar but is sufficiently similar to ordinary burning, that most subjects choose this word for the bizarre, agonizing, pain on the body surface.
Central Pain appears when the normal sensation of touch has been compromised by injury to the Central Nervous System, such as seen in spinal cord injury, stroke, or multiple sclerosis. Central Pain burning gets worse as one goes distally (centripetally) on the body parts, and while it can be very severe, the actual location can be difficult to determine for the CP subject, since skin topography disappears and body points become nebulous zones in the presence of the pain (atopoesthesia, allachesthesia).
Boivie’s Paradox is that one must lose sensation in order to become a candidate for greater pain (Central Pain). Current research suggests that a receptor for Adenosine, AR3, a Purine receptor, is a central factor in the bizarre burning (dysesthesia), and pharmacologic research is underway to see if help can be found.
Scientists theorize that the brain does not like to be shut off from the external environment. It craves information. When a person loses touch to a certain degree, the brain is theorized to recruit input from the pain system, which is more durable and more able to exist after injury. Central Pain is considered to represent an incomplete injury.
This system does permit a small degree of information about the world to come into the brain, but it is very confused, with dis-integration of the information. Stimulation in one area may also give pain in a nearby area (known as ephase). The topography of the skin is distorted in the extreme, with body parts feeling more like enlarged zones. This is not entirely unfamiliar, since visits to the dental office can leave someone with the feeling of a “fat lip” which is not in fact swollen at all. Central Pain patients often describe ballooning of the feet or legs so that no particular perception of the body part is possible, but there is a general impression of the location. Such areas always have severe burning dysesthesia (pain).
The National Institutes of Health have indicated that opiates are ineffective in Central Pain. Opiates work at cord level, while Central Pain operates at higher centers, such as the area around the thalamus.
Neuroinflammation refers to the chemicals which accompany repair of damage, but which of themselves create pain. In most injuries, this pain prevents use and promotes healing, but since the Central Nervous System cannot repair itself, the chemicals become a huge problem. Certain of these, such as Brain Derived Neurotrophic Hormone and Tumor Necrosis Factor are thought to participate in Central Pain. These chemicals are produced in the glia, cells which surround the neurons. Experiments indicate an explosion of glia in nerve injury pain, with a four hundred percent increase in these cells and resulting flood of inflammatory chemicals. The accompanying increase in neuroinflammatory cytokines is therefore no surprise, since the patient perceives the burning as being of a chemical nature, which as it happens, is quite correct.
Central Pain is the most severe pain state known to man, yet it lacks verbal descriptors by which the public can appreciate its magnitude. It is therefore verbally incorrect, as it were. It should be noted that most with Central Pain do not have the fully elaborated variety, but in all its forms, Central Pain is very bad. Those with it say they would choose cutting the cord and total paralysis if they could be rid of the pain, an almost incomprehensible measure of what is happening to them.
Even darker, a large number of those who went to Dr. Kevorkian were suffering from Central Pain, but this fact was overlooked by the media, which insists on the availability of words when reporting a story. Alice (Betty Lou Hamilton) took her life in silence and no one was present to hear the tree fall in the forest. It was a very quiet death. Did she ever really live? Did she actually suffer? Can anything exist for which there are no words? Just how alone was she? Brief sorties to the dentist, and that nagging low back pain, while bad, do not qualify us as experts on just how out of order the pain system may become. One cannot see pain. It is easy to turn away from the Betty Lou Hamiltons–we never really noticed them in the first place. They looked okay to our eyes, and the eyes are the monopolists of the senses; except in severe Central Pain where the burning is the monopolist of the senses and for that matter of most of the thought processes.