Apathy, the ineffective remedy. Why is it so popular among Central Pain Commentators?
In the last article, we noted that one of the most common responses to hearing about central pain is actually a rebuke, “Just be glad you’re alive.” This remark is somewhere berween “I really don’t give a darn” and “Life is tough. Deal with it.” Either way, it is apathy through and through.
It isn’t surprising that apathy meets central pain, for several reasons, among which are:
1) The term is unfamiliar
2) It has no inherent meaning, Your center hurts? What does that mean?
3) Central Pain is such a severe illness that most of the seriously afflicted stay at home. They have to wear limited clothing, cannot establish a sleep cycle, are exhausted from the pain, and they require a narrow zone of temperature to avoid unnecessary discomfort. Such people are unavailable for public interaction.
4) The Central Pains involve a MIX of pain sensations, and it is not possible to describe a mix to someone for whom pain is the most singular definite experience of their life.
5) There is simply NO vocabulary by which to describe central pain. To get around this problme, Dr. Patrick Wall and Dr. Kenneth McHenry reported the most common pains. These are muscle pains (both isometric and isotonic), dysesthesia, hyperpathia, allodynia, shooting pain, circulatory pins and needles, and peristaltic (gut and bladder pain). No one can take a satisfactory history from a CP patient in less than twenty minutes. NO ONE. The CP subject may have such severe loss of working memory that when they are pressed by a doctor who has insufficient time for taking a history, the CP subject may commonly FORGET several important pains. Unless the doctor provides cues, along the lines of the Wall/McHenry guidelines, certain pains are almost certain to be missed. This makes the condition seem unclear, vague, and without proper description in the patient’s chart. Atopoesthesia, or loss of sense of the body surface, has been a classic symptom of central pain since Dejerine and Roussy first described it, yet less than one percent of charts reviewed made any mention of it. “Delay with Overshoot”, the classic elevated threshold for sharp pain, the major clinical sign of incomplete spinothalamic tract damage is found in only two major neurology texts, and a small portion of patient charts. Mithcell’s Delay, the 20-30 second delay for evocation from touch which distinguishes peripheral neuropathy from pain of central origin, if found in only ONE neurology text. If these major, established signs of central pain are not noticed, what can be said about the less common signs and symptoms?
6) Many doctors have not heard of, let alone are familiar with central pain.
7) The medical literature fail to specify WHICH central pain is under discussion, either lacking the knowledge or the concern to delineate which pains are being reported.
8) Because there is not satisfactory treatment for the burning, it is not a popular topic in the medical literature.
9) Pain biochemistry has advanced rapidly and is not understandable to a doctor who took biochemistry five years ago or more.
10) The landmark discovery by Ron Tasker that injury anywhere in the neuraxis COULD give similar neuropathic pain, has led to the fallacy that such injury DOES produce identical symptoms, making the threading out of the central pains unrewwarding and unexplored.
11) Companies making opiates are VERY prosperous and have no strong incentive to produce pain meds for a limited population.
12) Central pain produces no pathognomic changes on MRI and very few centers have PET and functional MRI to show the changes of pain.
13) Because there is no satisfactory treatment for the burning dysesthesia, the treatment scheme often involves a shotgun type of therapy which bombards the CP subject with a bewildering array of medicines, most of which have anectdotal support at best. However, the treated subject begins to feel embarrassed and uncooperative at the doctor’s consternation over the endless line of failed medications. Because the patient needs the support of the doctor, it is oommon to report some pain benefit when all that is being acheived is sedation. This creates a false assumption in the doctor’s mind that CP is like other pain. IT IS NOT, and its uniqueness is lost by lumping it in with ordinary pain.
14) There are many paradoxes in Central Pain which make doctors reluctant to acknowledge the condition. Like tertiary syphilis, the manifestations are legion, meaning that they are generally missed, jsut as they were when syphilis was a common disease. Among the paradoxes are the:
A. Boivie paradox, that one one must lost some sensation to become a candidate for severe central pain;
B. Wall/McHenry paradox, In paretic CP, the legs and arms feel very heavy and weak as if they would collapse at the same time the muscles feel cramped and contracted,
C. Bowsher Paradox, the paradoxical sensation of cold which is mixed with the sensation of burning.
D. Ephaptic/Misallocation Paradox. Pain may be felt at a location remote from that which is being stimulated, or if there is misallocation by the brain, the painful part may be perceived in the wrong place, such as bones perceived as sticking through the skin, or a painful phantom limb, which has been reported from motor cortex stimulation in CP.
E. Delay with Overshoot Paradox. As to sharpness and certain other sensations which alert injury, the CP subject is prone to injury because at first there is little sensation to the penetrating nail, or whatever, although once the threshold for pain is reached, the sensation of sharpness overshoots wildly
F. Thermal Inversion Paradox. Cold drafts usually elicit sensations of burning
G. McHenry Paradox. CP pain carried in the front of the cord lacks discriminative information and tends NOT to respond to opiates and other meds, while pain carried in the back of the cord (eg. lightning pain) carries very discriminative sense, which may nevertheless be inaccurate (such as the sensation of a muscle cramp).
15) Third party payers do hot favor a separate category of reimbursement for central pain, preferring to keep it under genral or other pain categories. This deprives patients of time for a workup and determined therapy which exceeds that required for normal pain.
These and other factors lead to considerable apathy where Central Pain is concerned, although it is the most severe pain state known to man. It is important to publicize whereeever possible. Your completed surveys are VERY helpful and as much as possible, the results are disseminated to where they will do the most good. Write comments to this website and others. Write letters to elected representatives asking for research funds for DP, and most of all, if someone patronizes your pain and you choose to respond, do not be afraid to say that Central Pain is far too severe to ignore, because it involves hypersensitization of ALL the pain systems in the body. Don’t just be glad you are alive. Be glad the research PhD’s are alive and do all you can to help them.