Here is a partial compilation of survey results for the last round of studies. We have given preference for those diagnosed with Central Pain by a trained physician, unless the symptoms were classic (eg. post stroke bizarre burning) and a visit to a pain clinic was pending as soon as motor rehab was completed.
A VERY DEEP AND HEARTFELT THANKS TO ALL WHO COMPLETED THE QUESTIONAIRRES AND TO THE DOCTORS WHO HELPED SOME OF THEM DO SO, AND TO THE DOCTORS WHO INVENTED OR SUGGESTED PROPER VOCABULARY INCLUDING PATRICK WALL, JOHN BONICA, RON TASKER, FRANCIS CRICK, AND SERGIO CANAVERO. WE ALSO THANK MARSHALL DEVOR AND JORGEN BOIVIE FOR THEIR COMPASSIONATE INPUT ON RESEARCH DIRECTIONS AND DONALD D. PRICE, CARL SAAB, wILLIAM WILLIS JR, CLAIRE HULSEBOSCH AND RON YEZIERSKI FOR STEERING COMMUNICATIONS. WE ALSO THANK MICHAEL IADAROLA FOR MENTORING KORY MCHENRY AT NIH, TO HELP IMPROVE THE QUALITY OF THIS WORK.
John Bonica first begged researchers to begin a database of central pain descriptors and symptoms. Dr. Patrick Wall implemented the early steps and was the originator of this project. The Wall/McHenry database attempts to gather verbal descriptors of central pain in order to inform researchers and therapists about the nature and course of central pain. The lack of a vocabulary has been a very serious impediment for research and treatment. Information from the Wall/McHenry database has been published by IASP, Pain, and other sources, including the NIH. Dr. Wall, wherever you are, God bless, and thank you for initiating this work. It is the kind of legacy to your life’s labors that you always hoped for, a practical one that would benefit those in pain. Hippocrates had nothing on you. “I was in pain, and you comforted me.”
A pain cure is an idea whose time has come. This “terrible lord of mankind” has sat smugly in its evil lair, mocking humanity for aeons. Now, it quivers as the scientists undermine its unholy abode. The revolution will not stop until pain is cleared from the land, and mankind can be rid of the monstrous and demonic overlord. In its place will be necessary pain, a friend to protect us, but not to torture us. The days of Central Pain are numbered. We must hold on for the victory.
Preliminary Survey Results
(Sample Size is 700 subjects. The last group with an expanded questionairre included only 300 subjects. The first two rounds of surveys were aimed at gaining a picture of central pain, and how to ask the questions. The percentages or yield increased markedly as the wording of the questions was improved to match descriptors used by laypersons. The percentages listed below come only from the highly refined surveys, designed to sweep in the correct number of responders. The tabulation by our compiler has not yet been rechecked/verified. Because laypersons vary in their vocabulary chosen as descriptors, some subjective interpretation of the data is necessary.) NOTE: In health interviews, nothing is ever one hundred percent–where this figure is given, it is the result of repeated questioning which risks influencing the answer, although effort was made to avoid this).
30% of you are post stroke, 49% are post spinal cord injury (both plegia and paresis), 21% are other, including multiple sclerosis, chemotherapy, syrinx, etc.
67% with plegia consider their CP to be spotty, 100 percent of those with paresis consider it generalized on the distal extremities.
60% of you with high cervical injury have some burning on the face, for 30% it is very severe.
95% of you have spontaneous and evoked burning dysesthesia
100 % of you with burning dysesthesia find it hard to localize the burning, or to define boundaries. (ie. Lacks discriminative information)
100% of you feel your pain sensation is mixed or jumbled. 63% of you with burning dysesthesia have a paradoxical sensation of cold when the burning is prominent (evoked). Others chose words such as “metallic” or “creepy wetness” to describe the extra sensation in the burning. No one is completelly satisfied that there is a word to describe the “confounding” pains which accompany the burning and are part of it.
65% of you have burning as a response to cold on the distal extremities.
3% of you have had thalamotomy for the burning, 1% have had motor cortex stimulation
23% of you cannot wear clothing because of the burning, 41% prefer modified clothing to reduce pain
99% of you with burning dysesthesia experience trouble sleeping because of contact with the sheets.
83% of you who have burning from contact with bedclothing cannot maintain a regular sleep schedule but must nap irregularly during the day. The use of sedating medicines did not seem to eliminate this.
73% of you find cold can elicit the burning dysesthesia more rapidly than heat.
67% of you with burning dysesthesia seek a comfortable ambient temperature.
93% of you with evoked burning dysesthesia can feel a zone of burning slightly beyond the area which is actually being contacted, (which is called secondary allodynia)
97% of you who have testeed capsaicin say that its burn is less severe than central pain.
61% of you with burning dysesthesia feel that no medication and no therapy such as TENS provides any pain relief. (Applies to burning only as more than half have relief of the muscle pains and lightning pains from medication).
86% of you who have tried capsaicin say that the temperature of warm water brings out the burning while the capsaicin is having an effect.
30% of you have burning on one side only, 24% have burning only in spotty areas
100% of you with dysesthesia feel the burning is worse centripetally, or further out on the limbs or body, ie. Distally..
40% of you with dysesthesia gain some benefit from medications
87% of those with dysesthetic burning who gain benefit from medication are not certain if this is due to actual pain relief or is due to sedation.
93% of you feel the pain is more bearable if the nervous system can be kept quiet and as free of stress as possible.
70 % of you perceive the burning as just deep to the skin. The remainder are unsure.
68% of you cannot appreciate the exact location of the skin surface (atopoesthesia).
87% of you with atopoesthesia and paresis have a gait abnormality which stems from not being able to sense your feet at the bottom of the stride acfurately (sensory ataxia). 91% of those with facial CP have a similar problem with pronouncing words because the tongue and lips have diminished sensation and awareness of topology of the surfaces involved in speech.
100% of you with dysesthssia have some loss of the sensation of touch
90% of you have some symptoms relative to loss or change in temperature perception
63% of you have lancinating or shooting pain
100% of you with lancinating pain feel you can discriminate the location of it.
77% of those with lancinating pain gain some relief from opiates or other drugs
91% of you have muscle pains, described as cramps, tightening, pulling, etc.
86% of you with muscle pain gain some benefit from medications, such as opiates, but slso from benzodiazepines such as clonazepam.
4% of you have misallocation, so that there is a distortion of the body part in pain, such as bone protruding through the skin.
43% have some burning in the bladder from distension, or nausea or fullness in the gut from eating.
69% of you have pins an dneedles, or tingling.
90% of you rate central pain as VERY severe
100% of you with paralysis consider the central pain MORE difficult to live with
45% of you feel your family understands what you are going through.
55% of you feel your doctor believes your symptoms
86% of you feel your self identity has been greatly modified by having central pain
63% of you with generalized burning dysesthesia have genital burning.
100 % of you rate your pain as severe.
72% of you rate your pain as very severe
29% of you rate your pain as unbearable.
89% of you say your pain is very exhausting
87% of you have symptoms or impairments ments which your doctor cannot or has not measured, such as changes in sharpness. In those with bilateral CP, there are problems with measuring PARTIAL loss in general, such as partial loss of vibratory sense, partial loss of balance, such as in the dark with no other cures, partial loss of position sense and the like. Many of you complain that the doctor is interested only in detecting total loss and will not take the time to evaluate partial loss.
93% of you have changes in memory, especially short term memory and working memory (mutlitasking)
98% of you with burning dysesthsia experince a latency of about thirty seconds from the time touch is applied to the time increased burning is evoked (Mitchell’s delay).
67% of you with allodynia experience “delay with overshoot” or a partial numbness to painful stimuli, which when reached and exceeded, overshoots into severe pain. (eg. step on a nail and are unaware until there is a very sudden severe feeling).
38% of you have no lesion on MRI to explain your pain.
7% of you were diagnosed correctly with CP by the first doctor.
Your most popular GABA drug is Gabapentin or Pregabalin, most popular opiate is oxycontin, duragesic, or methadone. Most popular muscle relaxant in clonazepam, most popular antidepressant is elavil, None of these drugs are rated very effective except in the case of posterior column pain.
21% of you are treated at a pain clinic.
5% of you describe ephaptic phenomena, or evoked pain in an area not being stimulated–this is different from secondary allodynia in that the unstimulated painful area is NOT continusous with the area being stimulated eg. pain in an arm when the face is rubbed.
45% of you are embarassed by your severe pain to the point where you smile or laugh when talking to others about it if they are skeptical.
Dysesthesia is any bizarre pain following nerve injury, but is commonly used to refer to the burning from injury to the spinothalamic tract or its connection in the thalamux, usually described as a complex sensation very similar to acid or like the skin has been rubbed off, or both. (burning dysesthesia is also called ST pain). Evoked burning dysesthesia is thought to be the most severe chronic pain known to man. Women experiencing labor describe burning dysesthesia as worse than labor pains. (See Davidoff) It leads to loss of life for some, being nearly unbearable. We are not familiar with suicide from the muscle pain or lightnning pain although they are more intense. This paradox probably stems from the fact that posterior column pains are more lolcalized, in smaller areas, and respond to medication. The burning, which does not respond well to medication, has been described as “fat”, “exquisite”, the “perfect pain”, the “Pain beyond pain” (Riddoch) “ghastly”, “soul destroying”, “evil”, “blanketing” and “torture”.
Allodynia is pain from a stimulus that would not be painful to normals, such as light tough, temperature change, or clothing/sheets.
Secondary Allodynia is pain areound the area touched, eg. usually about two inches beyond the area of skin which is touching a seat or chair.
Atopoesthesia is inabilty or impaired ability to perceive the skin surface (ie. the skin topology and contour) and its location in relation to the underlying structures.
Centripetal or Distal pain means on the more distant parts of the extremities, center forward of face lips and mouth, the sinuses near center forward of the face, and the outer genital area.
Posterior Column, also known as lemniscal pain, means pain carried in the back of the cord, and includes muscle pain and lancinating pain. (those with post. col. pain virtually all have abnormal somatosensory evoked potentials, an electrophysiologic test of the post. columns)
Multiple Sclerosis subjects more typically have pain first in their eyes and tightness first in their chest (“MS hug”). This is simply a tendency, not a universal.