Understanding the reality of chronic pain as disability

Dr Ellen Thompson, MB, BS, FRCP
Keynote Address (Dr Thompson’s formal text)

I would like to thank the organizers for inviting me to speak at this conference and I am truly pleased that REACH has devoted a full day to the subject of chronic pain. I am speaking as a clinician with 20 years experience, not a researcher, but I have been fortunate in having the mentorship, guidance and friendship of the world’s best scientists in the field of pain. After years of attending national and international meetings devoted to pain research and management, and seeing the huge gap between scientific data and clinical practices, I became an activist.

Margaret Somerville, the Montreal - based ethicist stated: Adequate pain management is a basic human right. I will be sharing with you some of the issues encountered over the past two decades. I shall limit my talk to chronic pain not related to cancer. In the last few years we have made some strides in treating cancer-related pain and also in treating acute post-operative pain, but the treatment of non-cancer pain is extremely lacking.

This talk is dedicated to the memory of two young men: Michael, who had his left arm torn off in an industrial accident, and Paul, who at the age of 25 developed a spinal cord tumour, which gradually left him paraplegic. They both suffered a great deal of physical pain which could, in part, have been prevented and it was not. In addition they have suffered an enormous amount of grief at the hands of ignorant health care providers who chose not to believe that the patients’ pain was what the patient said it was. Although both these two had marked visible physical disabilities, it was the pain that robbed them of any quality of life; in Michael’s case it appears the under treatment of pain caused him to end his life.

If individuals with obvious physical disabilities as a cause for their pain are not believed, I want you to consider the torment suffered by those who have no visible defects but still suffer severe pain which doctors do not understand.

Pain is a subjective experience. No one else can sense or feel another person’s pain. A simple scoring system of numbers from, 0, no pain, to 10, highest possible pain, is very helpful and has validity. Patients’ own report of pain remains the best form of assessment. Physicians have felt that they could make a more accurate assessment of the patients’ real pain. They have generally been wrong. Very recently I tried to persuade a prison doctor to provide adequate analgesia to one of my patients currently in jail. “I don’t give him what he asks for, I give him what he needs,” I was told.

The doctor could not explain to me how he knew what the patient needed, nor did he know that 10% of the population cannot metabolize codeine to the active principle. Pain treatment is one of the remaining areas of medicine where genuine ignorance does not represent a problem for practitioners. (I mentioned that the infliction of needless pain in prisoners is against the Geneva Convention.)

Definitions:
Acute pain vs chronic pain: 3-6 months or pain persisting after healing has taken place. Nociceptive pain is a normal pain experienced in response to injury. It disappears as healing occurs. Neuropathic pain is the result of injury to nerves. Such injury can arise from abnormal biochemistry as in diabetic neuropathy, from infection. It is best know in shingles and post herpatic neuralgia. Pressure from tumours or scar tissue in individuals who have had surgery, are common causes. Avulsion of nerves or nerve roots, as in the case of Michael, is less common, but intensely painful. Neuropathic pain is relatively opioid resistant particularly to morphine and other mu receptor agonists.

Cost to society exceeds the combined cost of Cancer, Heart Disease and AIDS/HIV. Reasons for the high cost: Young people are often affected. Mishandling by the medical profession and allied health professionals remains a big problem. The medical management is woefully lacking despite available scientific evidence which could have enabled physicians to do a far better job by now. Medical students are taught very little about pain, neither about the scientific data which allows a better understanding, nor about the management of even most common pain states. Low back pain (LBP) is the most common type of pain and the second most common reason for visits to the GP. Yet we teach medical students no more about how to handle LBP now than we were taught 30 years ago. (We teach them more about malaria).

Other common pain states are:
Post whiplash pain
Repetitive strain injury, e.g. Computer neck
TMJ problems
Bursitis or tendonitis, frozen shoulders

The above are all examples of what Dr.J.J. Bonica (and I} call myofascial pain syndrome (MPS). Such pain has many similarities with known neuropathic pain. They are relatively resistant to narcotics etc. While the neuropathic pain of diabetes and shingles is not expected to show up in xrays or other radiological tests, both patients and physicians expect to see spinal pain on x-rays or CT/MRI scans X. If these scans are normal, that cannot be real pain. Tennis elbow is one of the few well-known and accepted pain states in this category. Yet what is tennis elbow? Epicondylitis? No actual pathology has been reported to the best of my knowledge. Jim Campbell, leading US neurosurgeon suggested that the spinal pain, without obvious pathology which causes so much misery and litigation, may be best understood in terms of tennis elbow up and down the spine. A brilliant suggestion. There is good scientific data to suggest that some of us are genetically predisposed to such pain. Approximately 15% of the population may develop persistent pain from trivial injuries which include migraines, LBP, reflex sympathetic dystrophy (RSD). There is also animal data to back this up.

The other major pain state causing a great deal of disability is Fibromylagia (FM). The disability in FM patients is due to widespread musculoskeletal pain in individuals who can look deceptively healthy. The associated fatigue adds to the disability. Neurochemical and immunological abnormalities have been demonstrated in FM patients, yet many doctors prefer not to believe in its existence. There is a great deal of confusion regarding the diagnosis of FM, even amongst experts.

The role of surgery in pain has been grossly over-emphasized, causing the following quote, “There is no pain so severe it cannot be made worse by a surgeon’s knife.” Example: failed back surgery syndrome (FBSS) seen in approximately 10 - 15% of individuals who have undergone surgery for spinal pain.

When surgeons failed in their attempts at surgical removal of pain, they concluded the pain could not have been physical. Why else did a number of repeat spinal operations fail to cure the pain? They called in psychologists who were eager to take on the challenge. I have recently launched attacks on the role that psychology and psychologists have played in research and management of chronic pain. First, I want to make one thing clear: I consider our psyche to be our best feature. When the surgeons I work with make comments like, “It is only psychological I suggest that without a properly functioning psyche they could not operate, but we could cut their legs off and a taller stool would allow them to perform surgery.” Having said that, my point is that important as our psyche is, there is NO evidence that it is of any GREATER importance in the causation and therapy of chronic pain than it is in a number of other health problems e.g. hypertension, asthma and peptic ulcers.

Psychologists have had this ball for over two decades. They have not delivered. They should never have been expected to. Chronic pain is a neurophysiological disorder for which Neurochemical, immunological and possibly genetic treatment modalities are needed. Similarly to the development of asthma medications, ulcer drugs including antibiotics for helicocobacter pylori or even identifying the TB bacillus allowing antibiotics to treat this illness which in the last century was ascribed to melancholia.

While psychology is not the primary cause for musculoskeletal pain, stress and psychological problems can definitely aggravate such pain, just as they can aggravate hypertension, asthma and ulcers. Workers’ compensation approaches markedly enhance the stress and anxiety suffered by its clients; the same is true for some motor vehicle and long term disability insurers. Such patients are definitely more difficult to treat. Avoiding iatrogenic or insurance induced stress would be more desirable.

Finally, and more importantly, the first writer in the subject of psychogenic pain, Dr. Harold Merskey, states this whole literature no longer has validity in light of the new neurophysiological scientific data. Many physicians and psychologists remain unaware of this and continue to appear in court to testify that post whiplash pain is not organic, but psychological, and therefore not compensable. I have never encountered any of these experts at national or international conferences dedicated to research and treatment of chronic pain. It is time to review the criteria for expertise in chronic pain issues. The International Association for the Study of Pain, IASP, is 25 years old. The Canadian Pain Society, the national chapter is nearly that old. While membership in these or similar societies does confer expert status, it is at least a beginning. The field of chronic pain is very extensive and complex with a great deal of new data. Many alleged experts appear to have no knowledge of this data. Should this continue to be acceptable?

Narcotics and Chronic Pain:
Neuropathic pain does not respond well to narcotics like codeine and morphine, even when physicians enlightened or brave enough can be found to prescribe them. As mentioned, morphine can be particularly ineffective.

Young Michael was the first patient to tell me in so many words, “they have tried all kinds of drugs for my pain, doctor, but Demerol is the only one which helps, morphine does nothing.” A few years later I had heard the same thing from a number of other patients and decided to publish this, since most doctors knew that long term use of Demerol was bad. I asked the neurosurgeon who treated Michael for further detail regarding the last name etc. The surgeon turned to me and said, “You are too late, he committed suicide.” When I finally obtained a copy of his chart, it was full of doctors’ notes and letters describing Michael’s ongoing pain and how he kept asking for Demerol which they decided that he could not have. There were comments like, “he probably likes the high he gets from Demerol and that is why he prefers it to morphine.” Michael left no note. We now know that Demerol is different from morphine in that it blocks certain receptors, the NMDA receptors, which are important in the evolution and treatment of neuropathic pain. Leritine and methadone are other narcotics that also block these receptors.

Many doctors are still reluctant to prescribe anything but small does of Tylenol #3 or codeine. For some patients these drugs may take the edge off the pain for an hour or so, then the pain returns, so that the majority of the 24 hours are spent in needless pain.

Another young man I recently met is a paraplegic due to MS. He had intense pain which was treated with a stronger narcotic, Dilaudid. The dosage was inadequate, and to experience any relief at all, he would take his full ration in the morning, and when the effect wore off, he would have full return of pain but in addition he would experience opioid withdrawal. For the past month he has been on a small dose of methadone which gives round the clock relief of pain with no side effects. He leaves me daily messages. He states that his life is turned around. He is still in a wheel chair.

Paul, the paraplegic with the spinal cord tumour, had intense, unremitting pain into both legs. The neurosurgeons did not quite believe him and asked me to consult. In order to know once and for all if this was real pain, I did a spinal puncture and injected local anaesthetic into his spinal fluid. He experienced complete relief of all pain. I since regretted having done this. Paul never forgot the bliss of having no pain and never stopped asking if we couldn’t do this permanently. It was like having allowed him into Heaven for a brief moment. For reasons of turf I was unable to take charge of his treatment the way I would have wanted to. Paul lived in horrible and inadequately treated pain for over a decade. He was said to be an addict. My voice was not loud enough to drown out those who claimed he was. One naive medical student even copied these allegations down in his hospital chart, that he was an addict who even engaged in drug trading. Tracking down the source of these rumours revealed he had once been caught altering a prescription to obtain a larger number of Tylenol # 3's.

A hallmark of neuropathic pain is that local anaesthetics work a lot better than narcotics. The trouble is they have short-lived effect, and if the pain is chronic, repeat administration is not practicable. This is true for patients with chronic pain from whiplash type injuries too, or patients with A nonspecific LBP. Injecting local anaesthetic into their TPS can give total relief for a few days. In the chronic pain population the pain always returns. If appropriate narcotic medications are found to reduce levels of pain to allow sleep and improved daytime functioning, I maintain them on long term narcotics. They all prefer the local anaesthetics, which is very reassuring in regard to questions of ADDICTION: No narcotic addict prefers local anaesthetics over narcotics.

I was not going to discuss the issues of addiction and the mythological fear many physicians and most others still harbour regarding this subject. Recent articles from the lay press, e.g. MacLean’s and the Globe and Mail have dealt with it in excellent articles. The truth is there is no valid scientific data to withhold adequate analgesic treatment of chronic pain. All one needs to be concerned about is that the medication works and that any side effects are tolerable.

It is extremely frustrating to treat patients with never ending complaints of pain, particularly if one’s education does not allow one to understand how the pain can really exist. Many physicians continue to seek malingerers, those with secondary gains. Such individuals do exist but are a lot rarer than has been believed. It is hard to distrust one’s patients, always second guessing them, working in an adversarial relationship. This contributes to the high rate of burn out amongst pain physicians and many quit after a few years. Hence the lack of adequate care.

Currently approximately 2000 individuals are on waiting lists for pain management in Ottawa- Carleton. The waiting list time at the two major hospital pain clinics is ½ - 2 years. At my private office I have tried to keep the delays down, but it is a losing battle. My secretary is regularly harassed by desperate patients. I field calls from concerned GP’s or other physicians who plead to have their patients seen early. This situation is played out all over the province and the rest of the country. It is an access to health care scandal! I wish to use this forum to appeal to federal and provincial politicians to allocate money for further clinical research and therapy. We do have the basic scientific data which would allow us to do a far better job. The investment into better management of pain is a win-win situation. The suffering of individuals and their families and the high cost to society could be markedly improved. The insurance industry which has been made to fund expensive but futile rehabilitation under well intended provincial auto insurance legislation, might also wish to invest in such research.

Besides better funding, we can start with believing what our patients tell us. For now it remains the best way to assess pain.