Catalogue of Rare Painful Diseases
Nearly all the 10 million people in the United States requiring long-term opiate pain medicines are those with identifiable long-term, rare painful diseases; not just tender knees or sore backs. All have very serious, unimaginably painful diseases that are worse than most people have ever experienced, even for a few hours. The pain and resultant loss of function has robbed the people with these diseases of a normal life. Cardiac disease is treated with cardiac medicine. Rare, painful diseases are treated with pain medicine. What has happened?
This safe medicine has been used for 4000 years, and yes, in rare cases (4/1000) addiction can occur. However, once the ignorance and fear is lifted, if found to have a genetically triggered Heroin type addiction, it can be quickly identified and treated medically. It need never become a CDC “overdose death” who were, though not disclosed, nearly all street Heroin/fentanyl deaths; not community deaths from doctors’ prescription pads.
Since the CDC “guideline” was published in March 2016, ⅔ of the 10 million Americans with intractable painful diseases have had their medicines reduced below effective treatment levels; half of those taken completely off. Why? Out of fear that these patients are really dope fiends in disguise trying to score prescriptions and con doctors. As a result of this, purposeful under-treatment has become the norm. Mentioning the word pain in an ER, a hospital, or a doctor’s office decreases the chances of receiving treatment for your painful medical disease.
90% of the people on opiate pain medicine that walk into the ER are treated as “drug seekers.” Without permission, they are reported to the Brandeis created, federal “opioid surveillance computers” where every pill, every patient, and every doctor is tracked by the police through the PDMP (prescription drug monitoring programs).
Taking an opioid, or more correctly, opiate pain medicine for serious, rare painful diseases is now a medical crime. “Just take an aspirin,” the previous Attorney General advised. Just swallowing an opiate pain medicine, opiophobic apostles believe, will worsen the Heroin street drug “overdose crisis” exaggerated by the CDC. Just how under-treating a rare painful disease will stop the Heroin “overdose deaths” is beyond logic or even common sense. How would this work?
The under-treatment of any disease is by definition medical malpractice. Doing so, on purpose without the consent of the patient, elevates the cruel misdeed and is criminal negligence.
Rarely does a patient with a long-term, rare painful disease have a specific treatment. Only Palliative Care, or care designed to control the symptoms to improve life when no cure is available, is what we physicians have in our kit. Palliative Care is the unrecognized life jacket for people with these terrible diseases, as it exempts tapering and dose limits proposed by the voluntary CDC guidelines, and is exempt from most state laws. Yet, this protection for both the patient and the doctor is ignored.
JATH has provided comments to federal agencies on the frequently held “opioid summits”, conferences, etc. to establish a federal definition for palliative care (see our papers on Palliative care in Medium) — a simple thing to do. The resistance provided by the Fear of Addiction Phobia cadres is astounding. A printed, recognized definition would provide legal sanctity for proper pain relief irrespective of “high dose” fears. There is no such thing as too high of a dose, given the FDA mandate that high dose, low dose, are all appropriate. The CDC 9o mme restriction was made up and was previously invalidated by FDA (FDA 2012-P-0818), the agency in charge of prescription medications.
Based on research at JATH LLC, we believe it is time to create a new umbrella term for long-term, painful inflammatory diseases. We are calling it “SYSTEMIC INFLAMMATORY DISEASE” (SID). An umbrella designation is helpful since the diseases, like those listed below, frequently cross over into other diseases. In our experience, it is the exception rather than the rule that a person has only one of these conditions. It is a pathological process with wide spread energy draining and total body inflammation.
So, is there an answer? Yes. The power of the lawmakers. For three years, we have failed in our writings and our speeches. All has been for naught. Things are worsening by the day.
We need to institute state and national palliative care definitions immediately. CDC exempts palliative care from their misguided dose limits. States have included palliative care in their exception clauses. The few who have provided a definition define it as: cannot directly treat the long term disease, so treat the symptoms to make life better.
Lawmakers need to protect the 3% of the population and their numerous supporters who are under attack by the fear mongering government cabal. The protection of palliative care is already there. Palliative care needs to be protected from opiophobic attack and basic rules installed. Treat with prescription pain medicines. Do not interfere with the doctor patient relationship (Section 1801 42 USC 1395). We physicians and practitioners can handle fixing this disaster, but we need to be left alone to do our job.
It is still legal in the United States for licensed practitioners to treat as many people with painful diseases as one wishes at whatever dosage is needed, for any length of time, with any quantity required — drug police or not. We need our lawmakers to provide a safety net for our patients and for us doctors treating them.
LONG-TERM RARE PAINFUL DISEASES
(Disease without specific treatment or cures)
“The only treatment available to this group of diseases is pain medication: Tylenol and opiates”
CHRONIC REGIONAL PAIN SYNDROME (CRPS) and its associated disease REFLEX SYMPATHETIC DYSTROPHY (RSD): These two related conditions both exhibit abnormal responses to injury, surgery, auto accidents, and serious trauma. Some postulate that not treating quickly with high dose pain medicine can lead to these lifelong painful disabilities, losing the feedback systems in the body. Normally an injury produces inflammation with swelling and pain, then stops when done. In CRPS, the inflammation never stops and the slightest misread of injury or pain sets off pain, that according to the MC Gill scale, is worst of all medical conditions, including childbirth. The only treatment that works is around the clock high dose opiate pain suppression.
INTERSTITIAL CYSTITIS: This is serious inflammation of the inside of the bladder, like having a horrible bladder infection all the time. It is extremely painful. You cannot have intercourse or ride in cars due to bouncing, which creates pain. One woman said it was like having a “bowling ball with spikes on it” in her pelvis. The cause of this disease is unknown. It can last for years, it is incurable, and it is treated with palliative care since no primary treatment is known. Arms, face and hands suddenly swell for no reason, turn red and create terrible pain. Patients have improvement in daily life with high dose opiate pain medicines. Women comprise 70% of the group.
TRIGEMINAL NEURALGIA: “A lighting bolt of pain stabbing like a knife on my face” was how one person described this disease. There is no known cause, except somehow the nerve is behaving as though it were suddenly crushed. Many treatments are tried, but only high dose opiate pain medicines work to palliate (treatment without cure). The pain is so severe that this is a high suicide rate disease, some say 20%. “It’s like always having an electric shocking in your teeth, sinuses and face” said one person.
EDS, or EHLERS-DANLOS: Is a genetic disease with all joints lacking the glue that holds them together, so they just pop out for no reason. A dislocated joint is normally so painful, a person would go to the emergency room. This can happen every day for people with EDS. Obviously there is no cure since it is genetic. High and sometimes very high dose FDA approved opiate treatment is needed, long-term. Once on opiates, no one will addict so it is fine to use “God’s own Medicine” over extended periods of time, in the words of Sir William Osler, the father of Internal medicine. WE healers thank the Heavens this medicine has been available from the poppy plant for 4000 years. Its proper use by FDA standards saves the daily lives of people with EDS.
OCCIPITAL NEURALGIA: This is a rare form of cranial pain called a “headache,” but is more than that. Its only successful treatment is opiate pain medicine, sometimes in high dose (high dose does not cause any more problems than low dose — FDA 2012-P-0818). When it occurs, it is impossible to function. In this group, a similar type of cranial pain syndrome is the “extreme headache” or CLUSTER HEADACHES.
PANCREATIC INFLAMMATORY DISEASE (“Chronic Pancreatitis”): Is a very unpleasant disease with terrible abdominal pain and uncontrolled vomiting, usually precipitating a hospitalization, where it is often confused with chronic medical pancreatitis. Pancreatic pain is in the very severe category. The new class of opiophobic doctors are afraid the patient is a “drug seeker” and refuses to treat, not believing the patients’ history.
AFTER SURGERY — FAILED BACK and NECK SYNDROME: (and other postoperative long term pain syndromes caused by permanent nerve injuries) Occurs in a significant number of people after having neck and back surgery fail to improve, and many end up worse. Surgeons abandon these patients and do not take care of the surgically induced nerve injuries. More surgery frequently leaves things worse, again. This now becomes a long-term, incurable painful disease and requires long-term pain treatment with opiates, which is usually always effective in restoring life away from the “couch.”
ADHESIVE ARACHNOIDITIS (AA): Is a very painful rare disease of the arachnoid membrane, a thin covering over the brain and spinal cord that protects the spinal cord. When this membrane is cut during neck, back or brain surgery, or if incorrectly injected during epidural spinal “shots,” it becomes inflamed and stays inflamed becoming a “Systemic Inflammatory Disease.” Not only the covering, but all the nerves that go out from the spinal cord are permanently damaged. This causes pain with any movement of the back and neck. AA is one of the worst out of all the rare painful diseases. It is a suicide disease amongst the pain community. There is no treatment, only high, and sometimes extremely high doses of opiate pain medications will work to restore any meaning of daily life. Fortunately, long-term high dose opiates are tolerated well without systemic toxicity, even if taken for decades. Once taken without signs of addiction, addiction will never occur.
PERIPHERAL NEUROPATHY: Is a very uncomfortable disease. It is difficult to put up with for more than an hour or so with tingling, burning pain in the legs, frequent in diabetes and by itself for no reason. The incorrect belief that opiates fail to treat nerve pain leaves the patients on antidepressants and anticonvulsants (Lyrica, Neurotin). These “alternative drugs” are now made as primary drugs for pain by the CDC, but have serious side effects and don’t work. CDC brushed aside the medicines that work — the opiates. Tai Chi and mindfulness are not appropriate treatment of these long term painful diseases. A recent JATH twitter poll showed antidepressants worked 10% of the time, Lyrica 8% and opiates 75% of the time. Maybe we need to listen to our patients and not opiophobic government officials.
DESTRUCTIVE JOINT DISEASES: Rheumatoid arthritis, Ankylosing Spondylosis, Psoriatic Arthritis, Lupus (and other incurable autoimmune diseases, some 100) of the spine is a group of seriously painful, debilitating joint and back diseases included. These diseases have constant pain with every movement of the joints involved. We have a lot of expensive, high side effect remedies trying to avoid Mother Nature’s best take on pain — opiates. There is a universal fear opiate pain medicine cannot be used in rheumatoid disease. Doctors are afraid that treating with opiates will addict the patient. One patient stated, “She would rather be addicted than lie on the couch all day, unable to make her fourth grader’s lunch.” Again, no cases have been reported of addiction occurring while on long-term opiates. (Opiate or Heroin type addiction occurs with very first exposure to opiates in opiate naive people with the A118G gene for opiate addiction. Actually 99.5% of people do not have the gene and will never addict no matter the amount nor length of exposure to opiates)!
CENTRAL PAIN SYNDROME (FIBROMYALGIA): Have you ever ached all over and could not get out of bed to get a drink of water during the first days of the flu? Imagine this state of affairs being present for months, even years. “Fibro” as it is called by those who have it, ruins daily life completely with pain and serious fatigue every day. Recently, it has been shown that this disease is really an inflammation of the brain, thus the name change. The brain governs all things: fatigue, inflammation, pain, everything. Opiate pain medicines work for more than half, restoring functioning. Some need anti-inflammatory agents along with opiates, which oddly have been discovered to be anti-inflammatory in themselves.
CHRONIC FATIGUE SYNDROME: JATH believes this is the same as above Central Pain Syndrome and can also be part of other chronic painful diseases. It is the terrible tiredness you have with the flu, only this is permanent and accompanies many of the long-term painful diseases JATH is listing below.
PUDENDAL NEURALGIA: This is a terribly painful disease of the nerve that controls the functioning of the pelvic organs such as the bladder, genitalia, rectum. There are shooting pains into the genitalia. Sex never comes close to being possible. Car rides are agony with each bump driving horrible pains through the groin. It is like “crushing a nerve with a hammer” as one woman put it. This can come from surgical complications or just appear. There is no treatment, so save the infrequently successful attempt at surgical repair. What works is high dose, FDA sanctioned opiate pain medicine. One patient said, ”Pudendal Neuralgia is the white-hot nerve pain of a toothache, but in your groin. It’s pressure on your tailbone that makes sitting excruciating. And it’s constant, never ending”.
CHIARI MALFORMATION: This is a congenital disease where the brain is slightly malformed, with the back part of the brain too close to the opening in the skull where the spinal cord comes out. This causes compression on the nerves. Compression on nerves causes pain, serious pain. Surgery is tried and usually fails with many patients worse off. The surgeons just say “well you need tai chi, or physical therapy.” They need and respond to medium to high doses of opiate pain medication.
SICKLE CELL DISEASE: This is one of the most painful diseases known to man. Only occurs in people of African descent. This is a disease where a “crisis” occurs, with loss of oxygen all over the body, or hypoxemia the same process producing the extreme chest pain during a heart attack. Between the crises, there is no pain. However, when the crisis happens, the pain is unimaginable. Every inch of the body is involved. The accepted treatment has always been high dose intravenous opiate pain medicines in the ER.
LATE STAGE LYME DISEASE is a disease caused by a bacteria picked up from ticks who pick up the bacteria from deer. It was discovered in Lyme, Connecticut. It shows up as a large round red area on the skin. If not treated with tetracycline antibiotics it goes dormant and then resurges as a different disease. Instead of a rash, you have arthritis, fatigue, and loss of energy. The treatment can be with additional antibiotics, but the painful joints respond to narcotics or “opioids” or opiate pain medicine best, in FDA approved high doses.
ENDOMETRIOSIS: Women have a lining in their uterus that will thicken during their menstrual cycle to receive the fertilized ovum. Sometimes these cells are found outside the uterus where they are not supposed to be. During every cycle, these extra amounts of uterine lining in the abdomen swell and induce pain. The pain can be so bad as to literally double someone over on the floor, as described by many patients. Sometimes surgery and hormonal therapy can help, but the true relief can come only with high dose opiate pain medicine to take the edge off. This is a debilitating disease, rendering women unable to function. This is not “menstrual cramps”.
DESTRUCTIVE JOINT DISEASE: One example is the arthritis that occurs with psoriasis, a more common destructive and very painful rheumatoid arthritis. Psoriatic Arthritis produces agony with every movement of the joint. Try to get through the day not moving your knees or hips. The typical treatments for arthritis don’t work. Opiates do work if treated with enough. No valid science supports the idea that pain medicine is more dangerous the longer you take it (see FDA 2012-P-0818). Talk to people who have had their lives improved with opiate pain medicine (“opioids”). Other serious joint inflammation can occur with Lyme’s disease, Lupus and other diseases that have arthritis as a component.
DUODENAL OBSTRUCTION DISEASE: (MALS) A congenital disease causing crushing of the small intestine, producing acute intestinal obstruction with severe pain followed by uncontrollable vomiting. Patients are routinely ignored as “drug seekers”. This syndromes go by the names of MALS or Celiac Artery Disease, being vessel compression syndromes. Opiate pain medicine stops the attacks, but are rarely prescribed since the patients have “no proof” belying the fact clinical diagnoses have been the basis of medicine since Hippocrates in 500 BC — proof enough.
KIDNEY STONES: The pain from a kidney stone working its way into the ureter - the tube leading from the kidney to the bladder - is enough to prevent walking. If obstructed with a stone, the pain of the ureter trying it’s best to push the stone out is so severe, it has traditionally been reason for intravenous morphine in the ER. Not anymore. Since the CDC demonized 4000 years of opiates, it is common now for those with kidney stones to be treated with Tylenol and anti-inflammatory agents in the emergency room. These are not drugs for pain of this severity, but with the attempted delisting by the CDC of narcotic pain relievers as drug of choice (which it has been for 3500 years). This is the current state of affairs: treat with less effective medicines with more side effects to allay our fears that treating painful diseases that will convert innocent patients into dope fiends.
INFLAMMATORY BOWEL DISEASE (IBD): Crohn’s Disease, Ulcerative Colitis, Irritable Bowel Syndrome (IBS), Chronic Ileitis. This group of disease generally responds to opiate pain medication for its ability to slow the hyperactive bowel, and its anti-inflammatory properties, largely unrecognized. In spite of the availability of safe, inexpensive opiates which work in many with these diseases, the medical profession is frightened by the rare addictive properties (>1%). Other anti-inflammatory medications help, but still worthwhile, is to add opiates.
VERTEBRAL STRUCTURAL DISEASE: This disease of the vertebral column that has not had surgery as palliative measure such as Scoliosis, Kyphosis, congenital bone disease, collapsed inoperable disc disease, collapsed and crushed verterbra, permanent misalignment.
AUTONOMIC NERVOUS SYSTEM DISEASE (ANS):Your body has two nervous systems, the CNS is the regular nervous system that processes muscle activity and muscle sensations like walking. The ANS, which runs next to the spinal cord but not in it is in charge of things like blood pressure, heart rate, and when you sweat. When things go wrong with the ANS blood pressure sometimes crashes and it is difficult to keep it normal, resulting in passing out. This is called POTS disease or Orthostaichypotension. Another name for POTS is dysautonomonia. While this is not a painful disease in itself it is frequently a component of other rare painful diseases such as CRPS, Adhesivearchnoiditis, RSD.
OTHER LONG TERM PAINFUL DISEASES for which no treatment is effective, in need of protected palliative opiate pain control:
Post operative brain surgery “after pain”
Postoperative abdominal and pelvic surgery “after pain”
Degenerative Spinal Disc Disease
“Stiff Person Syndrome” with severe muscle spasms
Atypical Face Pain Syndrome
Multiple Connective Tissue Disease (MCTD)
Inoperable Tarlov Spinal Cysts
Postural Orthostatic Tachycardia Syndrome (POTS)
Various nerve impingement after surgery or trauma
Gastroparesis — Paralysis of the stomach with vomiting
Cyclical Vomiting Disorder
The worst tragedy in the history of American medicine has occurred — the opioid refugee crisis, with 70% of the 10 million people with long term painful disease “put out to the curb” as one woman with CRPS put it. Regular healthcare is being denied, as well with patients discharged from primary care practices and denied entry to new offices. “We don’t prescribe opioids” was a sign on an office door. The opiophobic manifesto of a few fanatics believing “pain pills are Heroin pills” brought to the CDC has created a catastrophe of a size that will become apparent once heads are extracted from the sand.
CDC is wrong. They had no standing. They had no science above “low validity” in their own words. They were not vetted by the FDA nor Congress, and did not seek approval from any major medical group, including the AMA, who recently warned following their 90mg cutoff falsehood could harm people.
CDC admits things were misinterpreted and that harm has been done, but its not their fault if the “Guideline” was misinterpreted and “hopefully the word can be spread in the pain community.” Wrong. If one throws a match out the car window and it starts a forest fire; one does not keep on driving. One turns around and helps put out the fire.
CDC has caused harm by suicide and ruined lives; so heinous as to be in need of immediate investigation by the body that created the agency in the first place, the United States Congress.
Thomas F. Kline MD, PhD for JATH Educational Consortium, LLC
Plus input from hundreds of patients with long term painful diseases who provided information about their diseases and what has happened to them over the last three years.
Not copyrighted, feel free to use.
Questions and comments are welcomed:
Corresponding author Dr. Kline: firstname.lastname@example.org
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An afterthought: A recent poll (08/21/19) has shown that 95% of the ten million people being treated on a long-term basis with opiate pain medicine have indicated they have one or more of the diseases above. These are not “chronic pain patients in the general sense but these diseases are specific identifiable processes all with generalized pain and disability. The majority of patients taken off opiates, perhaps as many as 5 million people, and without their consent, have these very serious diseases with no other treatments available. The magnitude of the numbers, the magnitude of the seriousness of these intractable painful diseases has gone unrecognized. CDC was required in January 2016 by its Board of Scientific Advisors to provide follow-up in case of unforeseen events. There are no indications as of yet that this has been done. The primary damage done to the people with the diseases listed above is the false notion that “opiates may not work for long-term pain” since “no study was done”. The obvious does not need a study. This is false and dangerous “science”. The rain falls downward. CDC needs to be held responsible for the damage done to American citizens with the rare painful disease listed above.