What Is Intractable Pain?
There is no suffering worse than IP. The recognition of it and administration of proper treatment ranks highest on the humanitarian scale.
Today, with better and better scientific understanding and medical treatment, persons with IP are living longer and providing physicians with the opportunity to study the causes, complications, and outcomes of this condition.
If you believe you have it or know a loved one or friend who mayhave it, you can confirm the diagnosis with the information given here.
What is Intractable Pain?
According to many surveys, as many as half the adult population claims to have some form of chronic pain. Common causes include headaches, TMJ, carpal tunnel, backaches, bunions, arthritis, sciatica, and fibromyalgia. Chronic pain can be intermittent or persistent and may require over-the-counter or prescription drugs in standard, labeled dosages. Seldom does this pain interfere with activities of daily living or disable a person for more that a few days. Intractable Pain (IP) on the other hand, is very unusual and has four outstanding characteristics: (1) constant, (2) severe, (3) disabling, and (4) causes detectable biologic impacts on the body’s blood pressure, pulse rate, hormone levels, and neurologic systems. It should be considered a serious catastrophic condition that, inadequately treated, leads to premature death. Some of its complications include dementia, osteoporosis, muscle wasting, obesity, and cardiovascular disease.
Definition of Intractable Pain
“A severe, constant pain that is not curable by any known means and which causes a bed or house-bound state and early death if not adequately treated. It causes adverse biologic affects on the body’s cardiovascular, hormone, and neurologic systems.”
It’s Not New, But!
IP is not a new condition. It has been around since human existence began, but it is only in recent times that medicine and science recognize that it is a clearly identifiable medical condition which is easy to distinguish from ordinary chronic pain.
While, the usual forms of chronic pain may be persistent, miserable, mild, or intermittent and occasionally interfere with a person’s quality of life, IP produces total disability and vegetative state with a very short life span. History, including the Bible, has few descriptions of IP simply because a full blown, untreated IP case cannot live more than a few weeks. The term IP was first used to describe British soldiers who were injured in World War II and required morphine for the rest of their life. In the early 1990’s State Legislatures began passing IP laws to allow physicians to treat IP with opioid drugs. Today, a great deal is known about IP and the necessity to properly treat it. While not curable, it, like diabetes, and some other serious medical conditions, can be controlled to relieve suffering and prolong life.
Why It’s Important To Distinguish Intractable Pain From Chronic Pain
It is common in medical practice to separate chronic diseases into two types: ordinary and severe. For example, we have hypertension and malignant hypertension to alert all parties that the malignant form causes damage to heart, brain, and kidney. We have cancer and metastatic cancer to indicate that the latter has spread throughout the body. There is Type I and Type II diabetes to indicate that the severe form (Type I) requires insulin.
This separation principal applies to chronic pain and IP. All concerned parties need to know that IP is so much more severe and debilitating that it requires medication above standard dosages. Otherwise, it will (1) directly damage the heart by raising blood pressure and pulse rate; (2) damage the brain by excessive electrical charges (i.e. “over-heating”); and (3) produce hormone changes that cause immune deficiencies, osteoporosis, tooth decay, severefatigue, malnutrition, and muscle wasting. All told, untreated IP usually causes a miserable suffering death within a few weeks.
IP should be thought of, as the serious form of chronic pain and a catastrophic medical condition. Only physicians who specialize in its diagnosis and treatment can effectively treat it. The diagnosis of IP should not be used, unless the patient has had a thorough evaluation by a pain physician who specializes in IP. No physician should ever apply the term IP unless his/her evaluation shows that the pain is severe, constant, debilitating, and produces objective biologic changes, such as elevated pulse rate and hormone abnormalities. Once the diagnosis is determined, however, all concerned parties including family, nurses, pharmacists, physicians, regulatory agencies, and health insurance plans should clearly know that this patient, like those with malignant hypertension, metastatic cancer, or Type I diabetes, will require intensive, long-term care by multiple physicians and ancillary practitioners.
How Common Is Intractable Pain?
Quite rare compared to ordinary chronic pain which may affect 30 to 40% of the adult population. Although about half of chronic pain patients may require regular medications such as anti-inflammatory agents, anti-depressants, or mild analgesics, IP will require the most potent opioid pain relievers. IP probably affects no more than about 2% of the adult population.
There are many rare diseases such as porphyria, scleroderma, or cancer of bone, which may cause IP. They are briefly described here.
Spine Degeneration with Damage to Connecting Nerves
Auto-immune-Rheumatoid Diseases of Fibromyalgia and Systemic Lupus Erythematosis
Peripheral Nerve Damage (arms, legs, chest wall) – The Severe Form is known an Reflex Sympathetic Dystrophy
Abdominal Adhesions Caused by Surgery, Infections, or Diseases such as Regional Enteritis or Endometriosis
Headaches – Usually Post-Traumatic or Post-Concussion
Arthritis and Joint Degeneration of Hip, Knees, or Feet
Malignant Fibromyalgia – Most cases of fibromyalgia are relatively mild but there are unusual, malignant cases. There is some evidence that is may be caused by viruses of environmental toxins and may be precipitated by an injury or severe emotional stress. this condition or syndrome may consist of severe muscle and joint pain, interstitial cystitis (bladder inflammation), migraine, spine degeneration, and endometriosis.
Arachnoiditis – The arachnoid is the lining of the spinal canal. At its lower (lumbar) end the lining as well as the extending nerves may become very inflamed. Causation may be excess x-ray dye, too many injections of procedures, trauma, or infections. Regardless of cause, arachnoiditis produces a back pain usually more severe than that of cancer, osteoporosis, or herniated disc.
Pelvic Floor, Groin, Vulvar, or Prostatic Pain – IP may strike the lower pelvis of women and men. Heretofore, believed to be psychologic, it is now known that the small nerves in and around the pelvis, bladder, vulva, prostate, or urethra may be damaged by viruses, environmental toxins, or trauma. New terms including: “interstitial cystitis”, “vulvodynia”, and “pelvic floor syndrome” are being used to describe the conditions. Regardless, nerve damage in this area may produce IP which is localized to the lower pelvis or groin areas.
Reflex Sympathetic Dystrophy (RSD) – This is damage to nerves outside the spinal cord. Ankles, arms, chest wall, face, and legs are common sites. Not only is the nerve damaged, but the blood vessels and skin are adversely affected.
Review these characteristics and signs. If you or someone you know shows or exhibits a majority, they have IP.
Frequent crying spells, grinds teeth, grimaces, and overheats skin with heating pad or hot water bottle.
Afflicted persons are reclusive and remain at home (“shut-in”) and shun social contact.
Pain is constant and never stops even for an hour.
Sleep is not possible except when medication is taken to reduce the pain.
Pain is so severe that it causes a rise in blood pressure and/or pulse rate.
Pain is worsened by movement, activity, or stress.
Appetite, motivation, energy, libido, and desire to socialize are reduced to zero or minimal levels.
Without potent pain relief medication, usually opioids, the person with intractable pain will be bed, couch or house-bound.
Adrenal and pituitary hormones are altered as the body attempts to deal with the biologic stress produced by the pain.
Due to hormone and other biologic changes, the body’s immune system is dramatically impaired and infections of all kinds may occur involving the skin, urinary, and respiratory organs.
Due to alteration of adrenal hormones, calcium in bone and teeth are lost causing osteoporosis and tooth decay.
Attention span, concentration, and reading ability are dramatically reduced. It is unsafe to drive a vehicle if pain is uncontrolled.
Due to poor concentration, persons with IP frequently fall or stumble.
Persons with intractable pain feel hopeless, helpless, depressed, and often commit suicide if their pain is not relieved.
In modern society persons with IP can almost always obtain some pain relief and avoid a full-blown vegetative state. Over-the-counter pain relievers, muscle relaxants, anti-inflammatory agents, antidepressants, mild opioids, and abusable substances such as alcohol and marijuana will provide some relief. Undertreatment is, however, the rule not the exception. The most common cause of death is heart attack or stroke, due to a pain flare. Some persons die of sepsis which is a blood infection that begins with a minor infection in the lung, bladder, mouth, skin, or sinus.
Physicians and IP patients are often erroneously blamed for “overdose” death, because medication is found in the blood at autopsy. In actuality the most common cause of death is heart stoppage due to an uncontrolled pain flare, and this cause may not be evident in an autopsy.
The cornerstone of treatment is long-acting opioid preparations – morphine, fentanyl, methadone, hydromorphone, or oxycodone. Long-acting means a drug that is effective for at least 6 or more hours. The long-acting drug is repeated at regular intervals throughout the 24-hour day. Physicians, pharmacists, and nurses refer to this procedure as “round the clock dosing”.
Why is this critical? Since the pain of IP is constant and even present during sleep, the patient must maintain a minimal amount of opioid in their blood at all times to suppress their basic, baseline, constant pain.
Once an IP patient identifies one or more long-acting opioids they can take “around the clock” and get at least some pain relief, they can enhance their treatment with diet, exercise, and non-opioid medication. They can take short-acting opioids which help the long-acting opioid suppress their pain and help to control pain flares commonly known as “breakthrough” pain.
In addition to potent opioid drugs, proper IP treatment will require muscle relaxants since IP causes muscle spasms, and elevated pulse rate and blood pressure. Sleeping aids are a must to help overcome the pain which keeps patients awake. Certain hormone replacements will be necessary, since IP depletes adrenal hormones. Topical or skin treatment with lidocaine patches and opioid creams may be very helpful unless the pain site is deep inside the skull or abdomen.
Standard pain treatments such as cortisone injections, nerve blocks, physical therapy, acupuncture, psychotherapy, anti-inflammatory agents, anti-depressants, anti-seizure, and nerve block medications may all assist IP, but these simple measures CANNOT by themselves, control true IP.
Implanted spine devices to deliver opioids into the spinal column may be necessary, but the patient will still require other medications. Also, there are now implanted electrical spinal, stimulators which give some patients great relief.
***Please Read “The Intractable Pain Patients Handbook
To see this handbook, go to this site and download it to PDF Format.