The Opioid Crisis in Central Pain

The Opioid Crisis in Central Pain

Central pain (denoted here as CP) is pain of an unusual, unfamiliar quality of sensation following an injury to the central nervous system, typically cord injury or stroke. Most patients have severe impact on the motor apparatus and would seem to the observer to have an unexpected focus on their pain compared to less focus on their quadriparesis (weakness or other muscle dysfunction) or quadriplegia (total loss of muscle function given the devastation which follows injury to the motor system of the body, where one might assume loss of movement to be a greater problem than pain).(Our heart goes out to someone we see in a wheelchair, but do we have similar feelings when we see someone in shorts or a tanktop?)

One might assume that an interruption of the pain pathway would lead to DECREASED pain. Central pain does involve decreased sensation (major or minor) as to most touch phenomenon, but both spontaneous CP and evoked CP pain from little or no stimulus appears to a disabling degree. This paradox (known as Boivie’s Paradox) as well as the unusual, unfamiliar quality of the pain (a variant of burning) cause serious problems in communication with family and all others, including caregivers unfamiliar with central pain. Because the patient regards the pain as the most severe problem and requests relief from opioids or other pain meds, they not uncommonly are mistaken for having addictive tendencies.

Dr. Ron Melzack in Canada has shown that patients with severe CP pain do NOT necessarily become addicted to opiates, although they may use them for sedation while not receiving actualy pain relief. (see “The Textbook of Pain” by Patrick Wall and Ron Melzack, eds.). Unfortunately the shelter of sedation does not help them find a suitable treatment. The pain remains.

The opioid crisis has received a great deal of attention of late, almost entirely regarding its addictive potential; and the subsequent harm to the health of Americans. A separate crisis exists as to the treatment of central pain viz. that opioids do not work in Central Pain. The torture remains. Those with the condition generally report no real analgesia, although some sedation is commonly noted. It is not clear how liable to addiction people with severe pain may as compared to those with less severe pain, but it seems likely that addiction is a threat to anyone who consumes opiates or any of the related opioids
As always, there is a problem with definitions of central pain states. There seem to be roughly four categories. In fully elaborated central pain, which co-author Ron Tasker (a famous investigator of neuropathic pain and neurosurgeon in Toronto) has called the most severe pain state known to man.

The CP victim has severe pain from light touch (paradoxical), or even with no touch (the pain often focused in the skin or just beneath ii, as well as punishing pain in the muscles (whether or not the muscle is under a load).

Some investigators (such as S.Weir Mitchell of Johns Hopkins fame) refer exclusively to fully elaborated Central Pain when the term is used. Such pain can reach the level of complete paralysis and the nature of such pain is not like any experienced prior to the injury, generally becoming more severe as one goes distally from the nerve supply from the brain (ie outward on the extremities or elsewhere on the skin surface).

Ephapses, common in CP, or pain NEAR an area which happens to be touched or stimulated are nearly always present. This causes havoc if clothing is donned which contacts the skin. Pain from cold stimulus is generally more pronounced than warmth, although both may cause pain. CP sufferers nearly always must wear abbreviated clothing and avoid muscle loading. Based on responses to questioning, the patient typically sees this as describing the stimuli which evoke bizarre burning, but they see their condition as more or less a unity, even if certain subjects include various aspects as being present. Four categories of related conditions may apply


Category 1 refers mainly to unclassified, possible types of central pain, not clearly neuropathic. Ah example might be a spastic bladder in someone with cord injury. 

.Category 2 CP can be thought of as those who can endure the touch of clothing and also maintain mobility, but with significant disability due to pain from muscle loading.

Category 3 includes those with any bizarre musculoskeletal pain following stroke, spinal cord, or other brain injury.

Category 4 refers to those whose pain has followed insult to the central nervous system, but may not include an unusual (ie dysesthetic) quality. This category may include some who do not actually have central pain.

This shows that the categories are not strictly ranks of severity. Pain quality is also an important part of the differentiation. One may be quite severe, as with central pain in the muscles (from muscle loading) and not respond readily to a question about dysesthesia, since burning in the muscles (which would be category 4) while severe, is not as unfamiliar in pain quality as is skin dysesthesia. How would you describe the taste of salt to someone who has only tasted sugar? We may not appreciate how it feel to be cheated if we have only known fidelity, but how much more in the dark would we be if we did not know that cheating even exists. Mankind is uncertain about the nature or reality of Hell, but the literature on the subject provides better descriptors for Central Pain than much of the medical literature on pain generally or what is termed nociceptive ie. “normal pain” by the medical literature.

When we go to the doctor and give a pain history, how is it that he (she) understands what we are saying since the doctor does not have the illness which the patient is describing. The comprehension is due to the fact the doctor may have experienced a similar pain episode himself (through voluntary self-injection of capsaicin to duplicate the pain), or at least has spoken to a sufficient number of other people who have the pain to make it understandable and believable that the patient is talking about something real. This background is utterly lacking with central pain. The doctor may speak to zero other people with central pain in a lifetime of practice and therefore miss the fact that this is something entirely novel. The history will be re-characterized into something else, OR the patient may be thought to be hysterical or confabulating, almost certainly exaggerating. People who have had ordinary pain, ,know or think they know what pain is like and will reclassify what is being related to them into dimensions that make sense, given the context of their having had pain..

Correspondingly, all pain is bad and possibly quite bad. But severity is NOT solely what makes up the disability of Central Pain. CP often blankets the bodies skin surface or else large portions of the skin are affected. A fifty percent burn feeling over the entire body can be more distressing than a 90% burn over a smaller portion of it.

The doctor should, but usually does not, inquire into how the patient’s life is being impacted. If the patient says they cannot stand the touch of clothing, this should register as indicating something very severe since the  social consequences of not wearing clothing would be overwhelming in our society. I remember discussing central pain with a female artist of some repute who, after acquiring central pain, found it necessary to acquire remote ranch land and go without clothing most of the time. She could have her art work taken into public society while she herself had to remain hidden, isolated and alone. This massive change in lifestyle should signal to the clinician that a closer look at the pain is warranted, but instead the tendency is to assume the patient is catastrophizing. Add in an unsympathetic examiner for Social Security disabiilty or a skeptical examiner for an insurance company and you find a patient who is turned away from any financial assistance at all.

If the use of any muscles and every muscle is painful, the spouse must be a model of humanity not to question what the central pain subject claims they cannot do. If the doctor as well as the disability examiner refuses to acknowledge any disability what is the spouse likely to do? Sometimes the most vital role of the doctor is to back the patient in any confrontation with a social security disability review. Who is to support the spouse? It takes a sturdy personality indeed to soldier on through this predicament. Thus, the patient is often thrust into psychological isolation and this may be reflected in many aspects of life, not the least of which is financial survival.

“Burning cold” (like the touch of dry ice), while an authentically accurate descriptor of dysesthetic CP, is not likely to find a sympathetic listener anywhere outside a top flight pain center. It just sounds too alien. The patient is truly alone and none of us do well in such a circumstance when attempting to withstand suffering.

Making matters worse, a patient with ordinary (ie nociceptive) pain may erroneously conclude they have central pain, when in fact they do not. When pseudo central pain responds to opioids, the doctor then makes a second mistake of thinking that central pain DOES respond to opiates. It may be necessary to refer the doctor to the bulletins on central pain from the National Institutes of Health to persuade the doctor that something beyond opiates should be tried.It is not totally hopeless. Some few of the pain specialists can come to the correct conclusions about whether the patient ha s central pain because of the large numbers of patients which have been seen by them prior. A consistent picture of burning pain in an area of decreased sensation is the giveaway. Experienced clinicians are much less likely to be misled, although it can be a problem even for top neurologists, to distinguish true central pain from what may seem similar because patients must use very similar vocabulary to describe what is actually ordinary pain. Like someone drowning who reaches out to grab whatever is at hand, pain patients may adopt the vague terminology of central pain as they attempt to get help for their pain. Unfortunately, this situation creates confusion in the mind of the examiner, although true CP is actually rather simple to diagnose for an experienced physician. 

The following descriptor is usually sufficient: “Bizarre burning pain following injury to the central nervous system in an area of decreased sensation”.   

Examples of world class CP clinicians include men such as Ron Tasker, George Riddoch, the great French doctor Dejerine, and S. Weir Mitchell. Even today, the vocabulary of S. Weir Mitchell is instantly recognized as accurate by the central pain patient who hears it spoken. Mitchell actually helped found Johns Hopkins Medical School after finding that soldiers who developed central pain after neck injuries in the Civil War needed a place to go for treatment and evaluation. What is amazing is that there have been ANY who recognize central pain. Such doctors can often help the patient to understand what is happening to them. The patient is generally as bad as anyone in being a poor historian, ie. using terminology belonging to ordinary pain to grossly describe central pain. What other words can they use than the conventional terms for pain?

Without a vocabulary as a scaffold for the medical history, who is to blame the patient for giving an inadequate and misleading medical history to cloud the issue for the clinician taking a medical history. Still, it is a burden lifted for the patient to finally see that they are being believed, even if the doctor must inform them that no satisfactory treatment is known. This is better than undergoing surgery which fails to improve the situation. Psychological support can sometimes help the patient survive.

NOT treating is difficult for the doctor, but at least recognition of the verity of the patients’ story can lift quite a burden. Psychological help is not what is ordinarily considered adequate therapy for an organic malady, but it is better than ineffective surgery or quack remedies. And it is definitely better than shaming, a common response to CP by the ignorant physician. The doctor, who submits a bill, is assumed to be expanding the patients database of understanding. When this is not happening, the doctor may feel uncomfortable with simply listening and learning.

If one is truly incapacitated, it helps if others are not disgusted by the disability and do not think the patient is making things up. A spouse who is able to accept the inability of the affected spouse to wear clothing is in a much better position to be understanding and to a limited extent be helpful than one whose spouse has been told they are malingering. Throw in all the hopefulness with subsequent failure of surgery and one has a perfect situation for inducement to divorce or at least becoming VERY non-supportive and unhelpful. This is a tough place to be in for the patient with severe central pain and not only divorce or estrangement from family and society, but suicide finds a fertile ground for development.

If one awakes at night in a very dark room, objects in the room lose their definition. A state close to blindness occurs. If one were to ask a person in that condition about what is in the room, it is likely that the response would not be clear, would not be explicit, and would not be satisfactory for a sighted person. The reason is that there is no light to illuminate the situation. And light is what gives definition to the environment. Something similar occurs in central pain. Words are the light of our intellectual world. If we are deprived of words, how do we proceed to describe something. And what are words. They are constructs created to describe. Without them, it is hard to start the show.Since only those with central pain (ie. the dysesthetic aspects of central pain) perceive the alien sensations of central pain, their experience is not really accessible to others. This includes clinicians who treat such patients. And yet, there is remarkable success in describing central pain by some few experts.

The experience of CP is also available to some degree by the subcutaneous injection of capsaicin. Those with central pain experience MANY types of pain but we can at least be aware that the researchers who have injected capsaicin have very similar sensations to our dysesthetic burning (sometimes paradoxically described as a “cold burn), which is the most important aspect. Dysesthetic burning is after all the most severe and perhaps the defining aspect of central nerve injury pain for most who have it, as well as the other central pains.

The descriptive efforts of men like S. Weir Mitchell are remarkably descriptive of what patients with central pain dysesthesia are experiencing, even though Mitchell did NOT have central pain, although he had extensive experience with soldiers wounded in the neck who subsequently developed central pain.

This indicates Mitchell had a very highly developed ability to LISTEN, a skill not typically so well developed in many doctors. Students in the Physical Diagnosis lectures at Johns Hopkins Medical School are told “If you listen to the patient long enough, he will tell you what is wrong with him” Today, some doctors faced with inadequate attempts by patients to describe something without an adequate vocabulary to do so, have preferred to speak of central pain syndrome. How did we get to SYNDROME? Why not simply central pain. For many years, since Dejerine and others had begun to explore this condition. “central pain”, there was no need felt to tack on “syndrome”. One definition of “syndrome” is a “characteristic combination of opinions” or a characteristic group of symptoms or signs which occur together”. We must wonder if central pain is plural or singular. For many years scientists, sometimes calling it “thalamic pain” did not think they were speaking of something plural; rather, they saw a single illness with multiple aspects. The singular sufficed for many years and it does not yet appear that the plural is helpful in understanding. Perhaps preference for “syndrome” is really just an indicator of how difficult it is to nail down in words a condition for which no accurate words exist. In such a case CP is not a syndrome, but rather it is a condition, a specific condition with an identity.

The Wall/McHenry database consists of nearly 330 subjects who had been diagnosed at pain clinics with central pain, who answered a questionaire over the internet. Over ninety percent felt the signal characteristic was “bizarre burning under the skin follow injury to the central nervous system.” It seems reasonable to conclude that this bizarre burning is the most important aspect for patients. This gathering of responses seems to justify our feeling that the original describers of central pain as an identity were justified. The word syndrome may have crept in because some were lumped in with the condition, whose entry was permitted because of the vagueness in speech or by the trouble examiners had in understanding who really fit into this category. The danger here is that certain people may be included who do not actually have central pain. The foregoing not withstanding, NIH itself is now using the term central pain SYNDROME, so we are likely in the minority at this time, but we feel fairly certain that when the underlying cause of CP is known, it will once again be termed central pain and not a syndrome, not that it matters much, unless it leads to a cessation of investigative research for a single cause, such as failure of a nucleus of cells in the thalamus.

For most patients with central pain, when they speak of central pain, they are referring to the dysesthetic burning, although if pressed can actually give better descriptions of the nondysesthetic nerve injury pains which are part of the condition, but are typically, not as impactful. This is not always the case however. Some with muscle pains have very severe, disabling impact. What is also remarkable is that many patients with central pain additionally have severe motor impairment, such as quadriparesis or quadriplegia, but nevertheless regard their central pain as more disabling. The clinician or examiner may unnerve the patient by focusing almost entirely on the quadriparesis while the patient’s concern and hope for help may be centered on the central pain. Thus, the patient feels inadequate to describe the central pains and in fact IS inadequate with the result that the patient does not feel his illness has been adequately evaluated.

Since there is no satisfactory treatment for central pain (according to the National Institutes of Health), the doctor, but not the patient, may prefer to focus on what he or she has which CAN  be treated. This further leads to frustration on the part of the patient, who is so sick that they feel frustrated in trying to convince the doctor that they are very ill, and need help with meeting the pain,  even if they cannot describe it. Even poor historians are usually very good at describing pain, a vivid medical symptom. The doctor expects this precision in vocabulary, but they too often they are unprepared for a patient alleging severe distress with a near total inability to describe their pain. There is after all, no good vocabulary and the patient must often borrow from ordinary pain (called by doctors “nociceptive or noxious pain”) to describe their “neuropathic or nerve injury pain”) ie. pain carried in an injured or dysfunctional set of nerves or a dis-integrated nervous system (presumably one where the thalamus cannot do its job of integrating sensory signals coming up through the nervous system).

It helps if the doctor will read S.Weir Mitchell, who speaks the medical lingo (giving such dimension to descriptors as can be given, but that is only a start. The best approach is to listen very carefully to the patient and attempt to understand what the patient is trying to say AND be willing to listen for a sufficient amount of time for the patient to feel he/she has been able to give some adequate expression, poor and indistinct though it may be. The patient usually assumes the doctor knows what central pain feels like. Sometimes it is the patient who must be willing to devote sufficient time for the doctor’s understanding to develop. Frequently, this may be the doctors first exposure to central pain, although this should not be the case; for example, for a neurologist who works in a spine hospital where central pain is a common occurrence.

Central Pain, the Encrypted Agony of Alice in Wonderland


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.

Without Hope, the Soul Dies

“Physical pain is the greatest evil.”—Augustine.

So if Central Pain is not curable and in many cases of severe disease is overwhelmingly not responsive to medications, leading to lives of unimaginable suffering and difficulty, where is the hope?

This is a question many Central Pain sufferers find themselves asking more often than is really healthy. There is no good answer to this question any more than one can find an ultimate answer to any suffering in the world.

The existence of suffering has always caused difficult reflections. For the ancient Greeks, this problem loomed great. Their solution during the Hellenist era was the conclusion that suffering must be a product of the existence of matter. The next step was to postulate that the existence of matter was behind all evil. And so came the philosophy of emanation, that the Divine Being had emanated the Logos, who effected the creation and could associate with matter without being contaminated by it.

Life in those times must have been truly desperate to have evolved a philosophy which puzzled over evil and suffering. Yet, we find the same question on the lips of sufferers today. Why me? Where does this come from?

While all would agree that “suffering is deep doctrine”, it may be worth mentioning that if we convert medical problems to a theological discussion, research tends to stop. Dr. Patrick Wall, one of the founders of this site and part of the group behind it prior to his death, was very emphatic that we should keep theology out of the discussion of Central Pain, to avoid the negative hit on research which would follow. As in, “Ho hum. It is in God’s hands, so we may stop worrying about it.” NOT the kind of religious thinking which is helpful, at all. Central Pain is not a hair shirt which God gives us to wear for some wrongdoing. Augustine’s remark above is worth reflection.

Dr. Wall observed that treating pain as a theological entity had led to the same sort of mistaken thinking which made pain relief during childbirth a capital offense in the 1500′s, because it supposedly robbed women of their salvation. This idea only diminished when the queen needed forceps from a Scottish doctor to help accomplish a difficult birth. After that, the idea of pain relief for childbirth opened up, with the eventual discovery of the epidural block by John Bonica, M.D., one of the contributors to Painonline.

Pain seems remote except to those who must suffer it, to whom it can become almost everything. There is a decided tendency for pain researchers to have some link to pain experience in their own life to interest them in the problem. In the case of Dr. John Bonica, greatly loved by all who knew him, he had been a professional wrestler in New York City. He trained by running through Central Park with fifty pound weights in either hand. When this caused back pain, which would eventually require surgeries for Dr. Bonica, he went to medical school. There he continued to pursue pain research, in his own interest and in the interest of others.

In the 1930’s Bonica discovered the epidural block. The first patient to receive it was his own wife in the late 30’s. That bears repeating. The epidural was invented in the 1930′s, yet who paid attention? The foolish notion that such pain relief for labor was religiously proscribed, or not so urgent, resulted in FIFTY years of delay before the medical profession began to use the epidural block for the general public. When the epidural finally did come into use, there were no apologies to the mothers who had suffered long, as if no one had been guilty of ignoring the problem.

Pain is truly the stepchild of medicine. When Morton, who invented ether anesthesia, was sued into starvation by those eager to claim credit for his discovery, the public did not rise up to defend him. The courts did not protect him from endless lawsuits, even as surgical patients for the first time could undergo surgery while asleep. This great benefactor of mankind was forgotten and ignored. Similarly, the failure to recognize John Bonica looms as one of the great and astonishing oversights in scientific history.

Note that few events have impacted medical practice more than the epidural block. Yet, Dr. Bonica was not even considered for the Nobel Prize. This amazing oversight shows how little pain occupies human attention until it afflicts a sufferer, at which point it may become the most important aspect of being alive. Many of the topics awarded the Nobel become less relevant when impact on human life is the measure. If those in labor could vote, there is little doubt Dr. Bonica would have received the well deserved award. This failure is one of the unfortunate examples of lack of concern for women’s health. It also shows that pain is an issue almost exclusively for those who must endure it.

Now, we find ourselves in a similar situation with Central Pain. For the sufferer, it is often converted into a theological matter, with remarks such as “There must be something God needed to teach you”, or “You are lucky. You have been singled out by God for a lesson”. Such remarks are not only not helpful, they are thoughtless and cruel. Those suffering spinal cord or brain injury leading to Central Pain are not different from anyone else. They have encountered something, usually an accident, which has rendered them in a great deal of suffering. As Dr. Wall has said, we should NOT think of this in terms of theology, but in terms of mankind’s obligation toward their fellows. He said we should think of it the same way we think of gall bladder disease.

Pain, even normal pain, is not well treated. Those medicines which relieve pain, the opiates, have serious side effects, not the least of which are the unplanned deaths regularly described in the press from overdose. There is a real need for research into the basic mechanisms of pain so that newer and better methods of treatment can be utilizated. The solution is not regulation, but research. Generally speaking, opiates may give sedation which lessens pain, but real pain relief, such as one finds with the local anesthetics, is still not available for Central Pain.

Oddly, society does not reward pain researchers. When Morton discovered ether, he was not thanked. Rather, he was sued to the point of poverty and virtual starvation for himself and his family. At that time, a third of those presenting at Johns Hopkins for surgery committed suicide rather than undergo open surgery while awake, anesthesia being limited to a stiff drink and four strong men to hold their limbs down while the surgeon cut. Morton, the great benefactor of mankind, was hounded and harassed for the rest of his life. If men treat the researchers with such diffidence, we cannot very well ask the Divine to reward them for their behavior.

Today we see many projects and many dedicated physicians hoping to remedy various ills. The hope of the Central Pain patient is that some will be motivated to work in the field of nerve injury pain, currently quite neglected. And such as do this humble work are in fact our hope.

And if it requires that the noble, the great, the proud find themselves in need of such services, like the queen in difficult labor, while we do not wish Central Pain on anyone, our hope is that they, unlike ourselves, can command some real funding and not just a token bit of empty philosophy flung at them. The six people at NIDCR who do the work on basic pain research should be six thousand,. Their salaries should reflect the importance of their work. The media should notice those engaged in this difficult endeavor. We watch and await OUR John Bonica, with hope.

Mention should be made here of the late Christopher Reeve, a victim of spinal injury, who hoped desperately for research funds to cure his malady, but generously donated a large amount of money to Central Pain research, although he did not have Central Pain himself. We know of no greater example of charity in this field.


*The quote in the title comes from Colonel Gail Halvorsen, the “Candy Bomber” of post WWII Berlin, who with the permission of General William Tunner, dropped candy to the children of former enemies. KSL media reported this story:

Halvorsen believes he’s remembered because what he actually delivered by parachute wasn’t just candy, it was hope in a city that was devastated three years before by U.S. bombing. Decades later, he met a German kid — all grown up — who still remembered a Hershey’s chocolate bar that landed at his feet. ”He said, ‘The chocolate was wonderful, but the chocolate was not what was important,’” Halvorsen recalled. “He said, ‘What was important was that somebody knew I was in trouble, and somebody cared. That stayed with me. And that was hope.’

“And then he said the most meaningful words that I’ll never forget: ‘Without hope, the soul dies.’”

Later, one of these children, now adult, came to Col. Halvorsen, and told him that the chocolate tasted great, but it was knowing that someone cared about their suffering, which was important, because it gave hope.

Fractionated Touch Yields Dis-Integrated Central Pain

Traditionally, it is held that touch is carried in the posterior spinal tracts, also known as the Dorsal Columns. In this designation are the fasciculus cuneatus (arms upper body) and the fasciculus gracilis (legs lower body)

However, it must be remembered that much of the anatomical work has been done in monkeys or apes. Assumptions have been made, but we are not certain about humans.

Touch and painful touch do not always go together. For example, touch on the face goes directly to the medulla, while pain from the face drops down to the cord with the descending tract of the trigeminal nerve, to join a tract, the substantia gelatinosa which is carrying pain from the body. This is why some with Central Pain from cervical lesions may burn severely on the face, mouth, and nose (occasionally the eyes as well)..

Is your examiner really able to assess your superficial sensory neurologic status? It is difficult and unless he is using von Frey hairs (light filaments which detect subtle sensory loss) you are not really being tested. The safety pin is WAY too much stimulus for testing superfical sensitivity loss and the patient may come off the table with a pin prick, due to the hyperalgesia which characterizes Central Pain with incomplete lesions.

Temperature sensation is tested in Europe but almost never in the United States. Managed care administrators are not likely to approve such time consuming efforts, since the room, the patients skin and the testing electrode (or test tube) must be brought to a standard temperature before evaluating for decreased sensitivity to temperature. Furthermore the patient, who suffers the agony of the damned in cold water or cold temperature blasts will wrongly assure the doctor that they have excellent temperature discrimination..

Touch itself has been subdivided and LIGHT touch is thought to be carried in the front of the cord, to the side, in the anterior spinothalmic tract (goes from the spine to the thalamus, at the center of the brain back from the eyes. No one is certain what touch is carried in the lateral spinothalamic tract, but monkeys have this so humans are assumed also to carry some particular sensation in the LST tract. Pain is also subdivided. For example, burning pain is thought to be carried in the spinoreticular tract, while ordinary pain is carried in the spinothalamic tract. These tracts go to both the thalamus and the subthalamic nucleus. Pain from the muscle spindles (contraction pain) is carried in the before described dorsal columns, it is thought.

So the question arises, “What is the pathway of pain coming up to the brain in those with transection of the spinal cord?” Theory from people such as Schott is that pain nerves travel with blood vessels and may reach the brain this way in those with interruption of the spinal cord. The point is that some selection and filtering of pain is going on even before it gets to the brain. Consequently, one wonders precisely which tract or tracts carry the burning dysesthesia which so torments the Central Pain patient. It is possibly the anterior spinothalamic tract, which also carries light touch. The lancinating or lightning pains are carried in the posterior columns, it is thought.

In 1949 experiments by Hardy showed that if a tourniquet is placed on the arm, pain disappears in increments. So called quantum pain means that one type of pain disappears, and then another, until the very last pain to go is a burning, which has little or no discriminative information, which is called protopathic pain. it is assumed that Central Pain is in fact protopathic pain, as the descriptions are very siimilar. If this is correct, the brain is operating on very little information and may be tgurning the recpetion end of things up, up, up producing the agony of Central Pain. When fully elaborated, the subject cannot tolerate the touch of clothing. Blasts of cold air are intolerable.

In the normal person, pain is felt as an aggregate of inputs. The patient knows if the pain is sharp or dull, hot or cold, diffuse or localized, and the location of the pain is typicaly known. These features are not so apparent in Central Pain, or perhaps not apparent at all. Nonlocalizing pain is not a familiar concept to most doctors, let alone the public, causing many communication problems.

The agony which is felt may be poorly localized, and temperature reversal may cause cold air ot result in a burn. In other words, those features medical students learn to ask about pain are missing in Central Pain. This causes not a few to doubt that the patient has pain, since even poor historians tend to be laser accurate about pain.

Central Pain patients should attempt to think about their pain sensations so they can educate their doctors Since most spine injured people have had surgeries, the CP subject will usually have ordinary pain from alteration of the motion segments of the spine This pain may respond to opiates, while the burning dysesthesi usually does not. Wall reported “Brain” that those with bright lesions on MRI tend to have NO pain, while those with no unusual signal on MRI are the ones which most typically develop central pain. This is consistent with the size of the tracts in the spine, since the ST tract is not a discrete tract, bur rather like telephone wire, a bundle which in total is less than 0.5 mm, which is below the resolution of existing MRI. The other tracts mentioned above are even smaller.

All of this may combine to make the examiner skeptical, the inabilty to describe abnormal pain, the normal MRI, the bizarre things which evoke the pains. If patients will concentrate, and then communicate with the doctor, it may be possible to gain understanding by the medical profession of what is going on. This will save a great deal of wasted time, expense, and accusation of malingering or drug seeking. We hope doctors will realize that much of what they learned in medical school did not cover what is necessary to understand Central Pain.



All medical professionals prefer to use data which has passed the gates of study design, with due consideration to a truly representative sample of patients, elimination of confounding factors, conflicts of interest, appropriate statistics etc.

Unfortunately, the study which conforms perfectly to all of the desired boundaries has never been done and likely never will be done. The review boards and editorial contributors attempt to come as close as possible, but opportunities for error always creep in.

So, while recognizing the extreme limits of anecdotal evidence, there is probably no other type of data which can be presented at this time. The alternative to comment, which admittedly risks error, is that nothing, ever be written about Central Pain.

Central Pain has no vocabulary, no vernacular, no descriptive terms on which all mankind may agree as to meaning, since by definition, only those with Central Pain have felt some of these sensations. If one is dealing with alien or bizarre patterns of pain sensation, it is not possible to ask questions of patients which all agree have hit the nail on the head.

With that caveat, we have received reports that sleep deprival is an important factor in dealing with Central Pain. Speaking generally, many report that pain medicines simply do not result in satisfactory treatment. In the end, the CP sufferer finds himself or herself compelled to go on a one man plan to survive. Increasingly, the patients report that since they cannot manage the pain, they MUST find a way to manage their lives so as to minimize the pain consequences.

If we are to credit the reports, admittedly not ready yet for publication in a prospective study, it would appear that adequate sleep time is essential to combat the emotional onslaught  that confronts the patient with severe Central Pain. Without sufficient rest, the mood drops significantly, pain is more potent, depression and even hopelessness are almost certain to follow.. The considerable mental effort necessary to deal with elaborated Central Pain cannot be sustained without sleep. In some cases, patients have indicated that treating sleep loss was the most important benefit from the pain clinic. The indirect address of pain through treating sleep loss sounds a bit extreme, but repeatedly we hear from patients that pain which is overwhelming in the middle of the night drops considerably the following day if only some sleep can be accomplished.

Sleep is compromised in various ways in Central Pain. In the severe cases, where light touch evokes the dysesthetic burning of CP, the touch of sheets prevents a sleep posture where one can fall asleep. If some somnolence is achieved , it is interrupted by burning from contact with the sheets and so a cycle begins through the long night which is more or less torturous. If a little sleep can be provided, when the sun comes up a little light at the end of the day’s tunnel appears, which buoys the spirit sufficiently to go on. Sleep is particularly important for someone whose mental and emotional accounts have been raided and nearly emptied by the brutality of burning dysesthesia, kinesthetic dysesthesia, lightning pains, pins and needles,, and other inventions of the deranged  and dangerous pain system.

While sleep medications are diverse, and exercise when possible may help, even with the cruel and disabling muscle pains of CP, there are medications which assist sleep, even when no analgesic can be found to treat the pain. While side effects and dependency issues must be considered, it is not usually necessary to resort to exotic medicines to find something which works. The benzodiazepines have been used because they have the additional aspect of relieving some of the dysesthetic burning in some individuals.

There is always a cost to sedation, and sometimes it is a heavy one. Important decisions may pass you by. The choices and interactions which life entails can be mishandled or go unrecognized entirely. A patient on chronic sleep meds should be cautioned about assessment of and appropriate reactions to life’s challenges, family concerns, and personal planning. Still, despite any negative medication result, the operations of effective living are facilitated by sleep. And more importantly, the terrible pain which is sure to come calling on wakefulness can perhaps be held at bay if there is some emotional strength left, drawn from an account where sleep has made a deposit.

If you are lamenting the failure of your pain meds to relieve your Central Pain, it may be that the sleep you managed to get the night before is  more important to you than analgesics. While pain meds are not always effective in CP, the sleep meds may be able to help. Managing your life with CP means avoiding stress and as Shakespeare reminded us. sleep “knits up nature’s raveled sleeve of care”. You may have bad dreams about burning or pain or whatever when you sleep, but regardless, you will have more energy if you have slept.. Sleep can be an alternative fuel for pain meds. If finances permit, find a good sleep surface, the right sheets, the right ambient temperature, the right quiet, and whatever else promotes falling and staying asleep. It won’t work completely if you are in terrible pain, but partial relief can make the difference between abject depression and something of a good attitude..

Commonly chosen meds include Klonopin or even plain old Valium. These are comparatively heavy meds, but we have not received reports of addiction with these drugs, although the possibility must be allowed for. In the meantime, talk with your health care provider about your sleep patterns. Small things can lead to big results and this is an area where medicines are available with supervision by a provider.

As always, information here is for educational purposes only and is not medical advice.. Never rely on a website or the internet where your health is concerned. Contact your personal physician for actual medical information.

Shaking down another ion channel

Who is the culprit who tortures humans, who does bad things to good people, who reduces mankind to its lowest condition, actually presaging hell, as it were? Pain is the dark side of the force, the diabolical extinguisher of hope and happiness. It was perhaps meant to protect us from injury, but going rogue, it is anything but a friend.  Existing theory points to the ion channels which permit impulses to travel along nerves via what has been called an “action potential”:, which is a sort of current flow achieved by ions of sodium and calcium moving across the nerve membrane.

Just when TRPV1 ion channel was taking all the blame, it turns out that that particular calcium ion channel might have an accomplice. The putative stalking horse goes by the name of TRPA 1 or ankyrin 1.

The transient receptor ion channels are potent activators of pain neurons. While TRPV1 has gotten most of the attention, now studies suggest another channel might well be a co conspirator. In this field, those seeking relief, the disappointed guinea pigs of pain, know not to be overenthusiastic or to start counting our chickens, but at least the new work shows researchers are still investigating. Pain research is not totally dead. Not everyone thinks anticonvulsants are all that a patient in a pain crisis unresponsive to opiates could possibly desire.

Just to make you suitably confused, investigators have reported that a new drug, ADM-09, results in “calcium-mediated binding of the carnosine residue and disulphide-bridge-forming of the lipoic acid residue accounts for the observed persistent blocking or TRPA1. Feel better? Okay, not yet, but somehow just knowing the whole business of basic pain research has not gone away entirely, that scientific gobbledygook can help keep the spirits up. That phraseology just used to snow you actually means  ADM_09 is an effective antagonist of the nociceptive sensor channel..”

Or, in other words, if we could block TRPA-1 we might be able to block pain.

This was reported in:

Sci Rep. 2013;3:2005. doi: 10.1038/srep02005.

A TRPA1 antagonist reverts oxaliplatin-induced neuropathic pain.

We listed all their names so if they read this they will know we have put aside our agony long enough to appreciate the very hard work they are doing. The Central Pain patient may not be the best to discuss his suffering in terms others can understand but he likes to think he might be able to express gratitude..
Note to researchers:
If you cure this you will definitely win the Nobel Prize and make a billion dollars. And generations of Central Pain families will name their children after you. If you had any idea how unpleasant it can be to deal with someone with Central Pain, you would take mercy on those families who have to deal with it by making the CP go away. In the meantime, thanks for trying to turn down the flame on the most severe pain state known to man.




Hmmm. Something is wrong. A word is missing somewhere. Oh, there we go. The word POST is missing. POST traumatic stress disorder. According to the language, stress disorder is something the body and brain develop AFTER the stress. Apparently, during  the stress, the mind has blanket immunity to such problems. But does it really? Do our everyday experiences confirm that during a robbery, tornado, assault, etc. that our emotions are held in check, our thoughts and feelings sturdy and true, while only later does the system collapse and become dysfunctional? Is that right?

On second thought, maybe there is a larger category of which POST TRAUMATIC STRESS is a subtype. Maybe DURING the catastrophic event, we can go all wobbly and confused and frantic. Maybe some kind of hysteria can overtake us when we are actually IN the throes of a crisis, DURING the dreadful event. How long does the PRESENT last. Is it a couple of minutes, an hour, a month or even longer. How about a lifetime. WHEN exactly does the system give out and a STRESS DISORDER set in? What do we call it if we never get out of the pain in order to develop PTSD.

Take for example, CENTRAL PAIN. Does the frantic nature of severe pain somehow have a protective feature, an adrenaline rush perhaps, which shields us from the impending shutdown? If so, how much adrenaline can we count on? Does it last years?

Dr. Ron Tasker, the famous neurosurgeon who discovered that pain in the body is carried in the spinothalamic tract, has indicated that fully elaborated central pain is the most severe pain state known to man. If he is even close to being correct, and no one has more experience with pain patients, then did anybody else notice this? Well, S. Weir Mitchell, the civil war surgeon, was amazed to find his most brave officer reduced to the “TEMPERAMENT OF THE MOST NERVOUS GIRL” as soon as Central Pain set in after a bullet to the neck injured the spinal cord.

The Civil War being notably brutal and gory, things had to have been pretty bad to attract the attention of someone who had seen it all. What exactly was going on? It must have been impressive, because after treating some more Central Pain patients, Dr. Mitchell convinced Johns Hopkins Hospital to set up an entire wing for nerve injury pain patients.

Was their treatment for POST traumatic stress or was it something different because their pain was ongoing. They were actually IN PAIN, still, so one could not very well term it POST traumatic since the pain trauma was still there. Imagine, an entire ward at a top hospital full of formerly brave soldiers, acting like the MOST NERVOUS GIRLS. This was not over their paralysis, but their pain. What is up with that?

Aside from the offensive to feminist aspect of Mitchell’s choice of words, we get the picture. They were not themselves. They were different from those charging into the cannon’s mouth. They had left part of themselves on the battlefield the day they were injured. They were in fact living a life of deaths. Their real personality was no more.

Was this worse than post traumatic stress, this intratraumatic stress? Was it less? Or did it have components of two different disorders? Is chronic PAIN really identical to post traumatic stress? Can we help one but not the other?

When Riddoch, who invented the term “Central Pain” gave his report in the Lancet, he called the condition,  “A Pain Beyond Pain”. What could possibly have led him to characterize it this way? What was he talking about? There is nothing beyond pain, or is there?

These are the questions we ask. The psychiatrists and psychologists literally descend en masse on those with post traumatic stress, but they are conspicuously absent in the pain clinics. Is Central Pain too mysterious even for the psychiatrists? Does this mean the mind stays on even keel until AFTER pain has gone, at which time it flips out. Are psychiatrists only able to deal with incidents AFTER THE FACT, or can they be of assistance DURING a terrible trauma, even a long lasting one? Especially a long lasting one. Are the stresses and appalling shocks suffered by the patient’s family too remote and inaccessible even to study, much less treat? Does the condition even have a name? Is that out of reach? What are they waiting for?

Or are we assured that the human mind is durable and that the CP subject (who himself regards his pain condition as WORSE THAN THE PARALYSIS) will need no help beyond what opiates can provide during the months and years during which he is taken apart minute by minute, day by day, by an illness too terrible to describe.

If you relate to this quandary, and feel you could use some help now, you are obviously just“ a nervous girl” UNLESS, of course, the condition of pain present is really something sinister, and indescribably awful. Were the Civil War soldiers right that the pain is worse than the paralysis? Hmmm. That would make it pretty bad, now that you think about it..


NOTE: Due to the relentless intrusion by internet trolls, the comments function has been shut off.

Doctors and Patients are Talking Past Each Other

Why isn’ t Central Pain any better understood now than ten years ago?

On one occasion a neighbor took her sick child to the Pediatrician for an antibiotic. He told her the illness was viral and that not wanting to contribute to antibiotic resistant strains he would not give an antibiotic. He said to just keep her away from other children and the illness would have to run its course, since nothing helps viral colds. She was entirely outraged because the doctor charged the usual office fee for the visit, but did not do anything. She still had a sick child. Patients do not like to be charged for being told nothing can be done.


Is there anything like this in Central Pain? Absolutely. There is no satisfactory treatment, according to the National Institutes of Health. While treatments are alleged for peripheral nerve injury pain, no study has shown this to be the case for CENTRAL NEUROPATHIC PAIN. The doctor knows this but may send the patient home on successive visits with any number of drugs designed for peripheral nerve injury pain. A sedative may help a bit, but basically, the patient must learn to manage life to minimize pain because there is as yet no real treatment for the condition.


The doctor, knowing that no treatment is forthcoming if it is CP is not likely to press the patient to stop talking gibberish about Central Pain (what else can one do if there are no words for dysesthetic pain) and try to come up with something like an adequate verbal descriptor.  The patient is in PAIN and wants the doctor to do something right NOW.What else would a compassionate doctor do?


Until patients are required to be more specific, the doctor will be poor at sorting out Central Pain from other pains. Until the doctor has something real to offer, the patient will not want to pay money just to expand the database of the doctor’s knowledge. Almost invariably, the patient wants to talk about pain severity and not pain quality, because they want relief. And so, no progress is made. Only when both patient and doctor determine to do it right and take the time for a real history and physical will any of this change. In the meantime, with limited time provided by managed care, things will stay the same, with ignorance for the doctor and disillusionment for the patient. A real workup must be thought of in terms of hours or days, not minutes. Third party payers will have to do their part if things are going to move forward.

Personal Experience of Central Pain


It is with some reluctance I commit this to writing. Fifteen years ago I would dismiss me as mad.

As someone who never minded pain, I am utterly and profoundly humbled, and as you know deal daily with suicidal ideations.

I have no confidence in Prialt but it is the last stop so head into it with open eyes and an eye on what is happening to me, and undergo cognitive evaluations weekly through 2 personal friends who are shrinks.

I have taken several days that I might review, edit out exagerations due to immediate circumstance and to be sure to try to include all.

I am (was) intelligent and have a science (EE and Physics) background in addition to the Intelligence work and as a scientist I cannot reconcile any of this other than a total malfunction of a complex system with cascading events and triggers.

Upon reading it seem the histrionics of insanity, but having walked away from narcotics and virtually every medication I could tolerate without extreme side effects as they have had NO effect what so ever, I can categorize myself as either insane or this is real, and most unfortunately this is real.

Apologies again and I hope this may help someone somehow.


N.B. At this point we insert a sidebar to assist in understanding the remainder of this person’s description:

This is a submission from a person with central pain. It reminds us of the severity of the condition.

Note that this person has both spontaneous (constant) and evoked (elicited usually by light touch or temperature change, but sometimes the evoking stimulus cannot be identified) Your doctor should be made aware of which pains are continual or ominipresent, which can be evoked, and which are spontaneously intermittent.

Some of the central pains convey discriminative information (location, nature etc) while others are too vague to describe. There is no vernacular and not even any adequate clinical vocabulary for central pain dysesthetic burning, so the person typically borrows from the language of ordinary pain or invents terms. This borrowing makes the listener THINK they understand, but the dysesthesias are not like any other sensation. By comparison, a mix of blue and yellow can produce green color, but green color is not adequately described by saying well, it is blue and it is green. MIXES need a new name. Unfortunately, the name given to the mix of central pain burning is dysesthesia, a vague term if there ever was one.

The clinician can gain a little understanding of Central Pain by injecting themselves under the skin with capsaicin, which hits the TRPV1 receptors, (known to be related to thermal sensation) but dysesthesia is a MIX of sensations, which mixed together yield something which no human experiences, unless there is central pain.

Acid is painful. This is not rocket science. Painonline was one of the first to propose that the metabolites of eicosanoids, ie fatty acids derived from Omega 3 fats, were behind central pain. Further research has shown that the specific fatty acids are derivatives of linoleic acid. When these are oxidized, they become highly irritating to pain nerves, particularly those associated with thermal sensation.

Acids cause a burning sensation. This burning sensation can be and is perceived in central pain in a heightened fashion. The core sensation of central pain has long been described as a burning, “LIKE ACID under the skin”. The primary acids involved are called oxidized linoleic acid metabolites. The two more prominent are 9-HODE and 13 HODE. This neuroacidity is known as neuroinflammation.

Now that some understanding of the pathophysiology is known, clinicians should stop acting confused about what the central pain patient is saying. He is saying that he is being burned as if acid were under the skin, which really means in the nerves which lie just under the skin.

Why this burning can get to the brain is probably NOT related to normal nerve transmission. It may be a chemical chain reaction whereby acid production under the skin CHEMICALLY induces a similar acidity in second and third order neurons, EVEN IF those nerves are incapable of reaching the brain with normal sensory messages. We find the acids in the synapse at each level. We also find the glia which surround neurons multiplying and driving the acid production via growth factors, such as brain derived neurotrophic factor (BDNF) in what seems to be related to some sort of attempted repair function.

While this terminology is a bit mysterious to the average public, fatty acid metabolism is part and parcel of the biochemical education of EVERY physician. Why it has taken them this long to begin to put pieces of the puzzle together is almost certainly related to the fact physicians have assumed they know pain, and what the CP patient is saying does not match. Hence, many have relegated it to something like back pain, or even some form of malingering. Central Pain is way more severe than ordinary neuropathy. This real severity nevertheless has sometimes been attributed to some sort of weakness or even drug seeking on the part of Central Pain patients. After all, the Central Pain patient has nothing visible going on, so surely they must be exaggerating, goes the mistaken presumption. There is plenty going on, but fatty acids are not visible to the eye.

Patients with central pain need extensive personal and family counseling as well as whatever medical care can be provided, which is limited since conventional pain meds seem to have little or no effect on this type of nerve injury pain.

S. Weir Mitchell, who first described pain of central origin during the Civil War, marveled that his bravest captain was struck in the neck with a ball and that the resulting burning to light touch was so severe that it reduced him to the disposition of the “most nervous girl”. This person is emotionally wrought and his words might remind us of Mitchell’s description of his formerly brave captain.

For your own sake in description and to help educate our caregivers, it is helpful to categorize your central pains into specific groups. The following guidelines may be used.


Dr. David Bowsher described these as bizarre burning pains combined with a paradoxical component of COLD. This definition is more easily elicited from those who have recently acquired central pain, since with time, the sensation simply IS, and it is rather amorphous, except as to the burning.

As in all verbal choices aimed at central pain, even Dr. Bowsher’s words are an approximation. The essential aspect of dysesthetic pains is that they are unlike what would be experienced in normal pain. The subject has NEVER felt the dysesthetic sensations prior to acquiring central pain. The only thing that can approximate any dysesthetic sensation is the injection of capsaicin under the skin, and even there it reaches only the burning component and does not evoke the other dysesthetic sensations.

The proposed reason is that pain, which normally is highly discriminated, conveying a very large amount of information to the brain, presumably because pain is necessary to prevent further injury. This system is deranged with the dis-integration of signal in nerve injury, so that a MIX of sensations, unfamiliar in nature, results. We call this mix dysesthetic, but the most prominent aspect of it is most frequently described as having thermal qualities, “like acid just under the skin” (Note that this author uses similar terminology”)

Despite the predominant burning, one must also consider what it is that elicits or exacerbates the pain. Elicitations of greater pain through various stimuli are called “EVOCATIONS” and these are nearly always said to be blasts of cold air, also light touch, particularly occlusive light touch (such as laying a newspaper across the skin.

Mitchell’s test is to use light touch on a burning area. If the pain is from injury to the PERIPHERAL nervous system, the evoked pain will be instantaneous. In pain of CENTRAL origin, ie Central Pain, there is a slight latency, sometimes of only a few seconds, but typically around twenty seconds before the evocation really gets going.

Carl Saab, from UT and Yale, has elsewhere at painonline contributed an article on his research that confirms this same CP latency in the roof nuclei of the cerebellum (the vermis). Oddly, many pain specialists seem unaware of this simple test. It is not clear whether the current tendency to lump central pain with peripheral neuropathic pain is due to mental laziness in learning the clinical patterns, or whether the caregivers simply cannot sort out and understand the confusing verbal descriptors which patients use, often combining their central pain with the musculoskeletal (normal) pain from the original injury and surgical alteration of the motion segments of the spine. It raises the question of whether Central Pain is not really knowable to anyone who does not have it.

However, we lament the failure by many to differentiate the two conditions, since fully elaborated Central Pain is terrible and well beyond the impact of peripheral nerve injury in one limited area. (All pain is bad and so peripheral neuropathy is not to be denigrated by making this statement–if nothing else the AREA of Central Pain is typically large, while peripheral neuropathy is usually in smaller areas, cf. the impact of small burns to large burned areas).  Certainly if the clinician begins mentally to regard and treat central pain in the same fashion as vastly less severe diabetic neuropathy, the patient is not well served. The DSM book, by the American Psychiatric Association classifies mental disorders, but still impacts how pain is viewed generally.

There are rumors the upcoming DSM5 diagnostic edition may lump all nerve injury pain into one category. If this is true, we expect to see them differentiated once again in the future as more is learned about the two separate conditions. Recent research suggests that BOTH Central Pain and Peripheral Neuropathy result in upregulation of TRPV1 receptors, but these are also upregulated in response to ordinary painful heat, so this is clearly not the whole story of Central Pain.


Like normal pain, these pains convey discriminative information, such as distinct location, radiation etc. and they feel like normal pain. This author refers to these pains as “electric pains”.


In the literature these have been differentiated into kinesthetic dysesthesia (bizarre burning pains associated with movement of muscle loading) and isometric dysesthesia (pains not associated with movement, also sometimes compared to confinement cramps). It has been theorized that muscle pains result from dysfunction of the gamma motor system, which is part of the muscle spindle, as it passes to the brain.

Any normal musculoskeletal pain such as could be expected from vertebro/ligamentous injury or surgical changes in the motion segments of the spinal apparatus are NOT to be included in this category.  Dysesthetic kinesthesia can be severe and the literature contain reports of patients who are either totally or nearly paralyzed by such pains even though they have an intact motor unit. The majority of such patients are incomplete quadriparetics, it would appear.


Personal Central Pain Description continued

I am almost embarrassed to write this and do so upon request, that others may learn something. I would not believe this if someone had told this to me before I had it, and with decades of martial art and competitive fighting, pain has historically been an inconvenience and manageable. I cry from pain several times daily, leaks out, again embarrassing.

Relevant History
Personal: Competitive Full contact fighter Martial Arts, Multiple Black Belts several disciplines, Football, Wrestling, Powerlifting, Combat veteran

Fused C2-3 unknown origin possible congenital, possible minor fracture fused while healing
Laminectomy T ? between shoulder blades
Advanced Degenerative Disc Disease L1-2 very advanced
Spinal Stenosis, some areas worse than others

Chronic continual spasms nipples down, IT baclofen pump inserted Oct 2012
Boston Scientific Dorsal Spinal Stim Paddle leads inserted top down ~ T6, Totally ineffective, contributed to spasms out of operation for ~ 7 years, remains in place

I will attempt to describe location, frequency, intensity, type/sensation.
In all cases where temperature is cited for causality, cold is much worse than heat
In all cases where touch is cited for causality light touch is more likely to evoke the highest pain response, while stronger touch is more likely to evoke spasm attacks.

Pain is from nipples down.

Nipples through Abdomen front, approximately 80% of the time, aching indeterminate origin cannot pinpoint exact location, no causality,

occasional burning, frequent pins and needles moderate severity, unknown causality, can be
evoked by change in temperature, brushing of clothing, manageable typically 5-6 on pain scale
Spasms from severe to “vibrating pulsing” currently severity has been reduced with IT Baclofen

Back from C down to navel region in an inverted Russian cross, the major cross at the lumbar, the minor across my shoulder blades 100% of the time, no known causality cannot evoke
Spinal column pain 5-10 feels arthritic in nature along spinal column severe ache pain 8-10, and severe sharp lancinating pain
approximately 4-6 inches across again impossible to identify exact place seems approximately ¼ – ½ inch below the skin but not in the spinal column, severe ache 7-9
electric shocks, daily and frequently 9-10, sear directly down the spinal column/cord often right
down to toes but start high T .
Lancinating jolts (like being shot based on personal experience) pain 9-10
These are more prominent from low T down
Burning, Pins and needles 5-8, unknown causality can be evoked by heat, cold, rough clothing
Subject to severe spasm despite baclofen, although baclofen has helped

Navel region down bi laterally sometimes a bit worse on right side, right may be a 10 pain level left only 8-9 just enough less to differentiate

Acid dip,like being dipped in battery acid where it slowly and horribly burns through the skin until neutralized by a high PH application after which while no longer physically burning
It feels it is, one of the very worst but fortunately only 4-5 times a week

Electric shocks, daily and frequently 9-10, sear directly down the sciatic, peroneal often right
down to toes but start high

Lancinating jolts (like being shot based on personal experience) pain 9-10
These are more prominent from low T down

Crawling fire ants 100% of the time 8-10
Pins and needles severe 100% of the time 8-10
Burning, severe 8-10 100% of the time, if only an 8 putting on pants or a breeze or sitting or
touching evoke full response to 10.

Around house wear only boxers or extremely loose soft pajama bottoms whether inside or outNerves, seems like the entire Sciatic nerve is being ripped out of me from my big toe through mylumbar. Stretching to breaking point pain 9-10 Red hot and covered with shards of glass, in

addition to being pulled out, being twisted around and around. Agonizing, bi-laterally near

Pain Shell (my description) an envelope of pain ~ ¼ -1/2 inch below the skin envelops me from foot to
groin excruciating agony, vomit, experience sensory disorientation. Cannot distinguish conversation vision blurs, tunnel no visual discrimination unaware of surroundings lose timeline observers indicate these episodes last from 15 minutes to several hours,

Residual pain feels like I have been physically beaten and remains for days. [see kinesthetic dysesthesia above] This may be the very worst, were it possible I would likely commit suicide during these. Pain 13 on a 1-10 scale.unimaginable, indescribable, I scream sometimes til my throat bleeds (I am unaware of this) scares anyone who has seen it, Pain doc only observed something similar in a thalmic stroke victim who suicide out, feet move to a Babinski pose, not a hard spasm can be pushed back to normal (painful) but then moves back to the previous position. When this happens it always includes all of the other described

Leg Sensation. On the rare low pain day 6-7 my legs and leg muscles feel like they are filled with hot bubbling seltzer water. [see kinesthetic dysesthesia above]

Legs subject to severe spasms daily despite baclofen (although reduced from pre IT Pump)

Penis feels like it is being squeezed/crushed sometimes or bursting from the inside out at others

Left testicle aches throbs and vibrates (not actually vibrate but has that sensation) near continual, pain level low but very annoying maybe 4-6

Frenum extreme pain, unknown causality, 20-30 times a week time ranges from minutes to a day. Again hard to “locate” exactly but the frenum is not that big

Perenium extreme pain, typically evoked by bowel movement 8-10. Lasts minutes to hours

Butt feels like a drill is being driven through my ass bones (where I sit, the nerve plexus there) always there sitting exacerbates it always 8-10

no anal pain, occasional burning

Feet, stepping on a nearly imperceptible pebble will evoke severe local pain 3-10 minutes later that lasts for hours

Much of the pain cannot be precisely pinpointed, bizarre to me but…
EMG tests invalidate diabetic neuropathy (extremely well controlled insulin dependent diabetic. Only 1 A1C in excess of 6 in more than 16-17 years)
Recent extensive neuro workup for any organic complications, none indicated

Zero pain relief from anything, tried the anti-anxiety, every narcotic, marijuana, Ma (oriental) Meditation (still practice it), acupuncture.

Baclofen has helped a great deal with spasms and pain associated with the spasms themselves, except the extreme ones. prior to the IT baclofen running a finger lightly up the back of my leg caused severe spasms, lifting my foot backwards had same effect, crawling backward had same effect etc. All spasms reduced in frequency by 50% minor spasms have markedly reduced severity; the “screamers” are unchanged


House has been our favorite TV show for some time. The reason is that Dr. Gregory House deals in medical truth. He does this both in the way he behaves and in the way he works up patients. For example, House is addicted to opiates, due to nerve injury in his leg.

Basically he reminds us that pain hurts, and that those who have it are not more stupid, nor weaker than those not in pain. “If you have a buttload of pain, you need a buttload of pills.” This politically incorrect and medically incorrect statement is nevertheless humanly correct. If someone were to insist House give them an analog scale of 1-10 on his pain, House would do something to actually give them pain, so they stop asking him questions which cannot be answered.

The analog scale is supposed to be about pain. However, what it really is about is INTENSITY. Pain intensity is, unfortunately, only ONE aspect of pain. If you carry a sack of groceries two blocks, they are not so heavy. If you have to carry them across the plains, they are VERY heavy. Those manageable groceries of two blocks will make your arms fall off somewhere around Omaha.

Central Pain is the worst pain state known to man because it is severe AND because it lasts. There is nothing which covers that on the oxymoronic, paradoxical, but impressive sounding, “digital analog scale”.  Translation: Someone has been playing you for the fool with the scale.

As every medical student not roped onto the Procrustean analog scale bed knows, pain must be evaluated as to quality, similarity to prior pain, exacerbations and relieving aspects, duration, intermittency, radiation, and location. All of these very important aspects are conveniently ignored in the 1-10 system. Consequently, the examiner risks remaining completely ignorant of central pain.

Because of this, medical science is leaning toward abolishing the term, “central pain”, which has unique clinical manifestations, and lumping it under the much less specific term, “neuropathic pain”.

If only we could summon Dr. House to put these befuddled, hurried clinicians in their place, by insisting they actually take a history and do a physical which differentiates Central Pain from all other conditions. The definitive test takes approximately ten seconds and was discovered back in the 1800’s by S. Weir Mitchell. It was confirmed by Carl Saab, one of the contributing authors here–now at Yale. We owe that marvelous institution known as Johns Hopkins Medical School, the flagship center for a very long time, to Mitchell’s efforts to bring in foreign doctors, such as Osler, to upgrade American medicine.

During the Civil War, Mitchell discovered that he could identify pain of central origin by applying light touch. If the pain was instantaneous, there was injury to a PERIPHERAL NERVE.  If the application of light touch required a latency of twenty or more seconds before exacerbation of the burning occurred, the pain was of central origin.  

He also established for his own mind that Central Pain was severe (despite his handicapping lack of a 1-10 scale) by noting that some of his bravest soldiers developed the temperament of “the most nervous girl” after acquiring Central Pain. This was evidence enough for Mitchell that nerve injury was terrible. He subsequently dedicated a wing at Hopkins to study of nerve injury.

Since then, things have gone downhill, so that Central Pain has shrunk in importance, until now it is in danger of being abolished altogether in medical terminology. After all, there are lots of other pain patients who offer up similar numbers on the 1-10 scale.  No one is looking to see if they have the temperament of a nervous girl. Either Americans are getting braver, or the disease is badly misunderstood.

However, there is still Dr. Gregory House. In Season 5, episode “Last Resort”, in order to induce very severe pain, House injects his fellow as well as the patient, with Capsaicin, in a small area. Both moan and wince. Capsaicin induces a burn something on the order of the dysesthetic burning of Central Pain. The House portrayal of Capsaicin injection may not capture much attention, but those of us who have to live with this, not just as a diagnostic test, but as a way of life, took notice of this episode. We also could not help thinking that while the two on House just had the pain in one little area, that many of us must endure it over the entire body.

So we are down to Dr. House, but because the pain is real, we know that eventually some real doctor will notice. He will have to “not care what others think” as much as House, because nearly everyone else is missing this symptom. That is because it is not THEIR pain. If it were, then nothing much else would be of concern.  Sound self centered? There is the Capsaicin on the pharmacy shelf, ready to test your moral judgments. Don’t forget to inject it everywhere.