Central Pain is the Dark Pain of suffering. Dark matter is thought to be responsible for the majority of gravitational pull in the universe, yet no one can see or detect it. It is an assumption from elimination and observation of how things operate. Watch a CP rat try to chew of its legs to relieve the distal pain of CP and you draw conclusions pain is there, but you cannot measure it. Actually you can measure it in rats by counting the increase in glia around the dorsal root ganglion cells which transmit pain, by studying neuroinflammatory chemicals and cytokines in the superficial lamina, maybe even by placing delicate probes into the zona incerta of the subthalamic nucleus, but these operations are not possible in the intact human.
You know dark matter is there because of the way things behave in nature, but dark matter is exceedingly difficult to see. In fact, it is not only impossible to see, it is also impossible to detect. Central Pain is not much different. Serious researchers in pain can observe the presence of central pain by the way people (or experimental animals given cord injury) behave, but there is no way to measure it. For that matter, any central pain patient will tell you they are simply using the words they have, but in fact, the physical agony is a new sensation, or perhaps a mix of existing sensations to the point they are unrecognizable.
The ordinary spinal cord injury person, focusing on mobility, is cheered on, or even driven on, to develop as much function as possible.
This is simply an extension of the principles of athletic training. No pain no gain. However, with sensory nerve injury pain, the principle may not hold at all. “No gain in pain” may be the real guiding principle. The question is whether rehab centers can do a one hundred eighty degree turn and advise those confronting central pain to pace themselves carefully, so that they do not become overdrawn on emotional resources. Is it possible to urge more performance on the motor side of things while encouraging avoidance of stress on the sensory/emotional side? It is a challenge, but there must be a realistic awareness that the central pain actually exists, is quite possibly terrible, and like any person in severe pain, some ongoing soothing of feelings is essential, if at all possible. This easing of stress may involve proper education of family members or even of the patients local physician.
The habit of trying to make patients keep moving forward, fighting as it were, can become a habit in medicine. It is not however a universal tool. Pain requires retreat, rest, withdrawal. If one watches a wounded deer, pain is there specifically to cause the animal to hole up somewhere until the pain lessens. Stopping movement and avoiding further injury is in fact the specific message of pain. It makes no sense therefore to assume that when severe pain arrives, the patient is to be “driven”. Ordinary people are permitted to live ordinary lives. Nothing could be further from the truth in central pain. When facing this suffering, the patient is typically told they must be a fighter, must get going, must write a book, must become a “superhero”. This is balderdash and runs counter to the bodies innate reaction to pain.
The same physician, if he does not think, will say that pain is a warning not to use the part to avoid further injury; and, with the other side of the mouth say that if central pain is really, really severe, then it is time to really, really get going, to prevent its immobilizing of the will..
Therefore, conservation of self (thin though the self may be in the identity eroding grip of unbearable pain) is usually the best weapon against pain. Since the injury will not heal, the most logical approach is to modify life so that less stress is coming at the person. This is not easy to do since the patient is trying to describe their plight to others in order to gain help. CP seems too heavy to bear on one’s own. Based on this hope, and a desperate search for some relief, many pain clinics prosper without any real solutions to offer. Their own prosperity is given as support for their efficacy, when in fact it is the severity of the pain, not the potency of the relief which is driving the system.
Most pain clinics fail miserably in treating central pain. This is not their fault because there are no medicines to dispense which accomplish such a thing. They are open for business, but the shelves are empty, yet they are doing a booming business. The irony is all over the operations. What they can accomplish is treating the non central pain, ordinary pain which often follows spinal cord injury. These pains come from the fundamental touchiness of spinal cord segments (C1, C2 etc down to S5) with aberrations in the precise configurations necessary for bending and weight bearing. The body is efficient and in the spine, every little structure has its function. The skeleton can sacrifice in some areas without fouling up every other bony part. The spine, however, is highly integrated. A shift in bearing or position in one area is likely to put abnormal loading on discs. It becomes just a matter of time until remaining discs begin to malfunction, soften, dry out, crack, shrink, herniated or give up. Most spinal surgery is a temporary matter, where pain is concerned. There is hope the new flexible polymers will be able to replace discs and provide the cushioning which has been missing in bone grafts.
There are MANY patients who do well and function happily after a bone graft for disc replacement. However, these happy campers tend to have a SINGLE disc replacement at ONE level without injury or displacement of the lamina, the facet joints or uncus (zygoapophyseal joints). Strangely medicine exists today accepting that the donor graft from the hip can and does often hurt for life, while the area in the spine where a great deal was removed and the hip bone inserted is going to be pain free. This really does not make sense.
For these secondary pains, there is justification for a system to monitor opiates or other meds. To avoid legal complications, many pain clinics refuse to dispense pain meds. This is quite a contradiction in terms. Others are simply unofficial drug store police, who remind one of a hall monitor of opioids. No matter how exacting a pain center is on dosing controlled substances, the perfectionism on record keeping and dosimetry has no influence whatsoever on the ability to help central pain. It is about methodology of compliance with the law and ethics, not about pain relief.
A truly functioning pain clinic would be very much like a social organization, getting the word out to society, organizing charitable fund raisers and in general acting like organizations dedicated to solving a medical problem. Consider, for example, Jerry Lewis and muscular dystrophy. That organization is fundamentally aiming toward research money. Pain clinics generally play no such function.
Some clinics are fundamentally anesthesiology driven. These naturally tend toward blocks of various kinds. There is also the technology of inserting catheters in the epidural space. While most success is about relieving spasticity, there have been some claims of help by steady release of opiates into the spinal area. While the reports on central pain are possibly valid examples of relief of neuropathic pain, the generalized failure of the pumps to stop central pain makes one wonder whether the pain relieved was actually CENTRAL.
Injury to the long tracts of the spine at any level, and also to the brain pain tracts at any level, is capable of causing central pain. This pain typically has “burning” as its most prominent aspect. However, the burning of CP has the paradoxical component of “cold”, so it is obvious we cannot simply use the word “Pain”. To consider whether spinal pumps are working for central pain, we need careful descriptions of what agonies are present, and which were benefitted, and to what degree. These descriptions are glaringly absent from the literature and so we cannot do much with it.
Pumps play an important role for many, but they seem not to work for many severe cases. Pain blockage usually does not work this way. Lidocaine makes EVERYONE go numb. Since the implanted pumps help SOME of the time, we are back to square one. We must make sure which type of pain is actually being benefited. The same may be said of the centers which use transcranial stimulation, either by DC current, or by magnetism. We must first be assured they know what central pain is, and what it is not, before we can weigh the benefit reported.
We do not know that pain clinics are breaking as many or more hearts than they ease. They are very expensive, and typically very regimented. A sick person in pain is not a good candidate for any kind of regimen. They may be too ill to travel, and require special accommodations for sitting. These accommodations are often absent from pain clinics. A person who saves money to travel long miles to a “pain center” may or may not benefit from being given some militaristic schedule for opiates, along with “CONTRACTS” which are aimed at protecting the doctors license, not at pain relief. This is not to say such measures are not necessary. It is simply that as we see buses going around town to conduct students to special schools, it seems something similar ought to occur for many who wish to visit pain clinics. Should they really be out of reach costwise for the severely injured patient, who is not fit to travel? We think not. The assumption that it is only pain, so the person can simply travel to the clinic is often an unintentional brutalization in itself. What is needed is some kind of pain ombudsman to advocate for the CP subject with the clinic.
Until actual cures are developed by the dedicated pain researchers, more effort at pain clinics should be directed at assisting at the social level. Large pain clinics should have therapists trained to educate the patients family about the adjustment and accommodations necessary to deal with central pain. This sort of assistance is available in nearly every other serious handicap. However, the obsession with preventing addiction seems to swamp other considerations when time is allocated at many clinics. In the meantime, every CP patient must take a careful measurement of their own resources and make sure they are retaining enough peace of mind to get by. It will always be in short supply when severe chronic pain is involved. Stress is to be minimized. Boredom and being “locked in” to the bare functions of life with no distractions for relief, is NOT a minimization of stress.
We take injured kids to camp for a little R&R. Shouldn’t pain patients have something similar. Maybe an official “friend” at the pain clinic. Maybe an occasional massage for the kinesthetic dysesthesia. Maybe a free subscription to cable TV. Maybe government could assist with stress producing situations, such as court appearance, or other compliance activities, which the stressed out CP patient finds overwhelming. Certainly, family counseling should be provided, not to chide the patient, but to reassure the family that their efforts are really necessary, that the CP person is actually very ill.
Hedging against stress, not demanding that anyone in severe pain ‘write a book” about their experiences (who wants to read that kind of whining anyway?), or “start” an organization” or “open a website” is more realistic than driving the sick person like a donkey to make superhuman accomplishments and really get involved in society. The wounded deer affect is in operation in central pain and it must be acknowledged. The deer does not withdraw from the herd for its safety, because the herd exists for its own preservation. Yet, the withdrawal may avoid endangering the herd. Nevertheless, it is necessary so that the deer can heal. Human, however, are not deers. The crowd, the public, the group can reach out to help the ill, just as it does for countless pains. Human compassion makes us more than intelligent apes. We should not ask what the injured person can do for us (make us feel competent despite our incompetence, by being “brave” a “fighter” a “book writer”). Instead society needs to help themselves along with us by devoting the resources to understanding how it is that the pain message is created by neurochemistry and neuroanatomy. In doing this, they will make obsolete the millennia old reliance on addicting opiates and move on to sophisticated medicine. An important offshoot will undoubtedly be a block for the neuropathic pain of Central Pain, which probably is not much different in its neurochemistry than ordinary noxious sensations in a healthy nervous system.
For every “hero” with central pain, there are hundreds collapsing in defeat as they find not only can they not do something extra, but that they cannot even do the ordinary day to day activity which life requires because they cannot handle the stress on top of their pain.
Presently, most of what passes for treatment of CP works via what is fundamentally sedation. Serious pain relief is not usually available for severe cases. And so, until that day when someone finds a way to close off the TRPV-1 calcium channel, or otherwise block central pain, we say, “Avoid stress”. You are not going to conquer your pain, you can only save your strength so it does not conquer you.
And to the pain clinics. We love you, even if you are wildly expensive. You are all we have. Please do more. And remember, our families are hurting too.