3 Advances in Hormonal Pain Care

By Forest Tennant, MD, Guest Columnist

There are three new discoveries or innovations in hormonal pain care that I dearly love. I believe they are real trend-setters, but keep in mind that the “next big thing” may not endure.  Nevertheless, I’m so excited about these three newcomers to the hormone and pain care movement, that I wish to share them.

Hormone Derivative Treatment

Some really smart scientists know how to make derivatives or analogues out of the “real McCoy.” Why do this? Because the derivative can boost the potency of the basic hormone several fold. 

There are two hormonal derivatives that, in my hands, have been extremely beneficial to sub-groups of chronic pain patients.  The first is medroxyprogesterone, which is a derivative of progesterone.  In my experience, medroxyprogesterone is far more potent in treating intractable pain patients than is plain progesterone. 

I have administered medroxyprogesterone to intractable pain patients and most found that it reduced their pain and their need for opioids.  The causes of intractable pain in these patients were multiple and included Lyme disease, post-traumatic headache, post-stroke and arachnoiditis. We have often made a topical medroxyprogesterone (skin massage) cream for use over arthritic joints and over the lumbar spine of adhesive arachnoiditis patients.

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The second hormone is nandrolone, which is a derivative of testosterone.  When a derivative is made from testosterone, it is often called an “anabolic steroid” because it grows tissue.

Anabolic steroids have a generally pejorative or negative view since they have been used to grow the muscles and nerves in athletes that wish to gain athletic advantage.  Don’t be too offended by the term.  After all, the pain patient needs to grow some nerves and muscle to relieve pain. 

The U.S. Food and Drug Administration has approved nandrolone for use in “wasting” or “catabolic” conditions that cause tissue degeneration.  Many severe pain patients qualify.  A big problem today in pain practice is the Ehlers-Danlos syndrome (EDS) patient whose nerves, muscles and connective tissue genetically and progressively degenerate. Nandrolone is proving to be a Godsend to some of these suffering individuals. 

One really good thing about the derivatives medroxyprogesterone and nandrolone is that patients can safely try these hormonal agents for only a month to see if they get a positive response.    

Medrol Test

Medrol is the commercial and best-known name for the cortisone derivative methylprednisolone. It’s an old drug, but ranks as a top-notch newbie because it is the cortisone derivative that best crosses the blood brain barrier and suppresses neuroinflammation. 

To date, we don’t yet have a reliable blood test to determine if there is neuroinflammation in the brain or spinal cord, but it is essential to know if active neuroinflammation is in the central nervous system (CNS). 

Step one on the mending road is to suppress and hopefully eliminate neuroinflammation.  A Medrol test is, in my experience, your best bet to know if you have active neuroinflammation.  There are 2 ways to take the Medrol test.  One is to take an injection of Medrol for 2 consecutive days.  The other is to obtain what is a 6-day dose pack.  You take a declining dose of Medrol over a 6-day period.  All MD’s, nurse practitioners and physician assistants are familiar with the Medrol dose pack. So ask for it.   

Here’s the payoff.  If you feel better with less pain and better physical function, appetite and sleep, you have just determined that you have active neuroinflammation that is not only causing pain today but will worsen your condition in future days. 

If you have active neuroinflammation, you will need to start medicinal agents that are known to suppress neuroinflammation.  If your Medrol test is negative -- meaning it didn’t reduce your pain or improve other symptoms -- it means you don’t have much neuroinflammation and that your pain is due to nerve damage and scarring.  In this case you will have to rely on symptomatic pain relievers and perhaps try some long-term neuro-regenerative anabolic hormones to hopefully regrow or revitalize some nerve tissue.  

Hormonal Extracts

Years ago, including the days of the medicine man and shaman, extracts of whole glands, particularly the adrenals, gonads, pancreas and thyroid, were given to the sick.  In the early part of the last century, this practice was known as “glandular medicine” and whole gland extracts were administered by practicing physicians. Many a person today still finds that an extract of thyroid (made by the Armour Company) is superior to a single component of the thyroid gland or a synthetic thyroid. 

Some commercial companies have brought back whole adrenal and gonadal extracts.  These extracts are non-prescription and are starting to be used by chronic pain patients.  To date, they appear to be essentially void of complications or side-effects. Some chronic pain patients are reporting positive results for pain reduction and improvement in energy, appetite and sleep.  They are a safe, inexpensive way for patients and physicians who don’t like steroids or cortisone.

Hormonal treatments for chronic pain patients are fundamentally essential if a chronic pain patient wants some curative effects. 

Although hormones are a great advance, with more progress to come, they will never be a total replacement for symptomatic care with opioids, neuropathic agents and medical devices. Many long-term intractable pain patients have damaged and scarred nervous systems that neither hormones nor other known treatment can cure. 

Hormone treatments should be initiated as early as possible if a person develops chronic pain.  I recommend hormone blood testing at least twice a year.
— Dr. Forest Tennant

Hormone treatments should be initiated as early as possible if a person develops chronic pain.  I recommend hormone blood testing at least twice a year with a six-hormone panel.  You should replenish any hormone that is low in the blood stream. 

The hormone oxytocin has, as one of its natural functions, pain relief.  It is an excellent short-term pain reliever that can be taken with other symptomatic pain relievers to avoid an opioid.  There are other hormones made in the CNS that protect nerve cells by suppressing neuroinflammation and then regenerating them. To download a full copy of my latest report on hormones and pain care, click here.

Hormones and their derivatives are beginning to be used by chronic pain patients.  All chronic pain patients can and should ask their medical practitioners for a short-term therapeutic trial to find one that fits them.  While one size doesn’t fit all, all can find one size that does fit.  It’s the way forward.  

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Forest Tennant, MD, MPH, DrPH, recently retired from clinical practice but continues his groundbreaking research on the treatment of intractable pain and arachnoiditis.

The Tennant Foundation has updated its free handbook for patients and families living with adhesive arachnoiditis and intractable pain. The handbook features the latest groundbreaking research on hormones and pain care. To see and download a copy, click here.

This report is provided as a public service by the Arachnoiditis Research and Education Project of the Tennant Foundation and is republished with permission. Correspondence should be sent to veractinc@msn.com

Hormones & Pain Care: What Every Patient Should Know

By Forest Tennant, MD, Guest Columnist

As we start the year 2019, every chronic pain patient needs to know the status of hormones and pain care. Unfortunately, the recent hysteria over opioids has obscured the positive advances in the understanding and application of hormonal care to the relief and recovery of pain patients.

In fact, research and clinical experience is starting to revolutionize the way I personally think about pain care. Hormones are showing us the natural, biologic way the body deals with pain and injury. They are clearly the way forward.

Why the Excitement Over Hormones?

Hormones have recently been discovered to be made in the brain and spinal cord (central nervous system – CNS). Some hormones are made that have the specific job and function to protect (“neuroprotection”) CNS tissue from injury and to regrow the injured tissue (“neuroregeneration”). These hormones are collectively called “neurohormones.”

Intractable, chronic pain is actually a type of poisonous, electromagnetic energy that causes injury by producing inflammation (“neuroinflammation”) in the CNS and implanting the pain (e.g. “centralization”) so as to make it constantly (“24/7”) present.

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The process is similar to dropping acid on your skin which burns and causes inflammation to be followed by tissue destruction and scar formation. Fortunately, some neurohormones are made in the CNS to stop the pain, inflammation, tissue destruction and scarring process and rebuild the nerve cell network in the CNS.

Until recently, we physicians didn’t have a clue on how to enhance the natural, biologic hormonal system to help pain patients.

Excitement over neurohormones has really been enhanced by research in rats that had their spinal cords cut so that they walked around their cages dragging their hind legs. They were given some neurohormones which healed their spinal cords to the point that they could normally walk.

Other animal research studies using different test models with CNS tissue have also shown the power of specific hormones to heal and regrow brain and spinal cord nerve cells. This author can’t speak for others, but, in my opinion, these research studies are so compelling that hormone use in pain care has got to be fully investigated.

Are We Making Headway?

Absolutely, yes! First, eight specific hormones made in the CNS have been identified that produce healing effects in animals and show benefit in early clinical trials with chronic pain patients. These early trials indicate that some neurohormones can reduce pain and produce healing and curative neuroregeneration effects.

Six of these hormones are collectively known as “neurosteroids.” Don’t let the term “steroid” raise your eyebrows as it refers only to the chemical structure and not the complications of cortisone-type drugs. Some of the neurosteroids are known to the lay person such as estradiol, progesterone, and testosterone.

Two of the hormones produced in the CNS that control pain but are not classified as a “neurosteroid” are human chorionic gonadotropin (HCG) and oxytocin.

CENTRAL NERVOUS SYSTEM HORMONES

  • ALLOPREGNANOLONE
  • ESTRADIOL
  • DEHYDROEPIANDROSTERONE (DHEA)
  • HUMAN CHORIONIC GONADOTROPIN (HCG)
  • OXYTOCIN
  • PREGNENOLONE
  • PROGESTERONE
  • TESTOSTERONE

Due to all the controversies surrounding opioids and pain treatment, one would never know we have, in the past couple of years, made serious headway with hormones and pain care. Medical science has discovered which hormones reduce chronic pain and how the hormones can be prescribed. The overall hormone advance in pain care can, however, be generally summarized in that one or more of the neurohormones can be administered to provide some curative and regenerative benefit in essentially every chronic pain patient.

Replenishment of Deficient Hormones

The production of hormones made in the CNS can be assessed by blood tests which are available in every commercial, community laboratory. The amount of hormone in your blood stream is a pooled amount of hormone made in the CNS and in the glands; adrenals, ovary, and gonads (ovary and testicles).

I recommend a hormone blood test panel of these 6 hormones: cortisol, DHEA, estradiol, pregnenolone, progesterone, and testosterone. If any are low, they should be replenished. Why? Severe chronic pain may overwhelm the production of one or more of these hormones.

If you take opioids and other symptomatic pain medications such as antidepressants and muscle relaxants, you may actually suppress the production of some hormones, particularly testosterone, DHEA, and pregnenolone.

I highly recommend that every chronic pain patient have a hormone blood panel test at least twice a year and replenish any hormone that is low in the blood stream.
— Dr. Forest Tennant

The reason you must replace any deficient hormone is because all 6 of them activate pain centers (“receptors”) in the CNS to reduce pain and produce a healing and curative effect. These hormones act as sort of a co-factor or “booster” of symptomatic pain relievers such as opioids and muscle relaxants. I highly recommend that every chronic pain patient have a hormone blood panel test at least twice a year and replenish any hormone that is low in the blood stream.

The Pregnancy Connection

A couple of years ago I was presenting a scientific poster at a medical meeting on some of my hormone research. An old friend came up and asked, “What took you so long?”

I initially thought he was insulting me. He wasn’t. He was lamenting, along with me, a sad fact. We should have long ago been studying the pregnancy hormones, HCG and oxytocin, for everyday pain care.

Why? HCG in pregnancy is the hormone that grows the CNS in the embryo and fetus. Oxytocin is the natural pain reliever in pregnancy that allows a big “tumor” to grow in the abdomen without death-dealing pain. Also, oxytocin surges at the time of delivery to make sure that pain doesn’t kill the expectant mother.

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With such obvious knowledge about natural pain relief in pregnancy, we should have tested these hormones for severe, chronic pain problems before now. Do they work? Yes. Long-term HCG use (over 60 days) is proving most effective in reducing pain and restoring function in some patients with adhesive arachnoiditis and other severe pain problems. Oxytocin is an effective short-term pain reliever that can be taken for pain flares. It can even be taken with symptomatic pain relievers like aspirin, acetaminophen, or a stimulant to help a patient avoid opioids.

Goodbye Symptomatic Treatments

Until the hormones came our way, you never heard much about “symptomatic” versus “curative” care. Why? Up until the discovery that hormones are made inside the CNS and produce curative effects, about all we could do was prescribe symptomatic pain relievers such as opioids, muscle relaxants, and anti-seizure (“neuropathic”) agents. There was no need or hope that we can permanently reduce severe chronic pain, much less hold out a hope for cure or near cure.

Chronic pain patients are beginning to use DHEA, pregnenolone, testosterone, estradiol, progesterone, and HCG on a long-term basis. Dosages are beginning to be determined. For example, DHEA requires a dosage of 200 mg or more each day. Pregnenolone requires 100 mg or more. Patients report reduced levels of pain, fatigue, and depression.

Although few controlled studies have yet been done, the open-label clinical trials are impressive and clearly call for chronic pain patients to get started with the neurohormones that are being found to be beneficial. Neurohormones have changed our thinking and old-hat beliefs.

Every severe chronic pain patient needs to know they can probably do a lot of mending with hormonal care. Be, however, clearly advised. Hormones can mend a lot of damaged nerve tissue, but they can’t fix scar tissue once it sets in.

So far at my clinic site, we have around 60 to 70 people on oxytocin. Early results look good so far. Many are also on DHEA and pregnenolone as well. The treatment seems to be working.
— Nurse practitioner

Unfortunately, millions of severe, chronic pain patients have had no option in the past couple of decades except to take symptomatic medication and use such devices as electrical stimulators.

Even long-standing severe chronic pain patients who are on opioids, however, can almost always benefit from one or more hormones. Most important, I am finding that hormone administration is the best way in most chronic pain patients to reduce opioid dosages but still get good pain relief.

Therapeutic Trials

One of my major purposes in writing this report is to encourage all chronic pain patients to embark upon a search for one or more hormonal treatments that will reduce their pain, need for opioids, and yield a better life. Don’t wait for your medical practitioner to offer hormone testing or treatment. To many overworked medical practitioners, such a request may be considered a real nuisance or even a threat.

Be prepared. Check with other patients in your social media group. Know what you need. Make it easy on your medic. Please share with your social media group this report and any materials you have about hormones and pain care. Most MD’s, NP’s, and PA’s will appreciate your preparation and desire to try something new on a short-term, trial basis.

Every chronic pain patient needs to know that all the hormonal agents described here can be safely tried for one month. This is known as a “therapeutic trial.” Specifically ask your medical practitioner for a one-month, therapeutic trial. In this manner you can find out if the hormone is right for you and whether you should continue with it past one month.

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Forest Tennant, MD, MPH, DrPH, recently retired from clinical practice but continues his groundbreaking research on the treatment of intractable pain and arachnoiditis. To download a complete copy of Dr. Tennant’s report on hormones and pain care, click here.

This report is provided as a public service by the Arachnoiditis Research and Education Project of the Tennant Foundation and is republished with permission. Correspondence should be sent to veractinc@msn.com

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Is Palliative Care an Option for Chronic Pain Patients?

By Rochelle Odell, PNN Columnist

Most of us have heard about 2016 CDC Opioid Guideline, which is supposed to be a voluntary guideline for primary care physicians treating non-cancer pain.

What has happened? In the span of two years the guideline has seemingly become law. Countless pain patients have made the trek to their doctor dreading the thought that their lifeline -- opioid pain medication – will be reduced or even discontinued.

Pain patients are often forced into surgical procedures such as epidural steroid injections or implants of spinal cord stimulators and other medical devices. The implants and injections all too often create more problems than they help. I know because I have had three different stimulators implanted and removed, as well as two pain pumps. The devices ultimately damaged my spine, compounding my Complex Regional Pain Syndrome (CRPS). 

Many of us are told if we do not undergo these invasive procedures our opioid medication will be stopped.  We are then forced to find a new physician for pain medication, a search that is often futile.

What happened to “patient driven healthcare” and freedom of choice in the so-called opioid epidemic? Is there anything patients can do?

Yes, we can request our physician determine if we meet the requirements for palliative care, which is specifically exempt from the CDC guideline.

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Palliative care is often confused with end-of-life or hospice care, but imminent death is not a requirement for palliative care. The CDC defines palliative care in a way that many chronic and intractable pain patients would qualify for:

“Palliative care is defined… as care that provides relief from pain and other symptoms, supports quality of life, and is focused on patients with serious advanced illness. Palliative care can begin early in the course of treatment for any serious illness that requires excellent management of pain or other distressing symptoms for cancer.”

The World Health Organization (WHO) takes a similar broad view of palliative care:

“Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.”

According to WHO, palliative care should include “a support system to help patients live as actively as possible” and “enhances quality of life.”

If these palliative care conditions are met, does it mean we are safe from having our opioid medication cutoff? Not necessarily. but it’s an option we should ask our doctors about.

Therein lies a possible roadblock. Too many physicians, nurses and healthcare organizations still associate palliative care with cancer and other diseases where the only outcome is death. 

The Alliance for the Treatment of Intractable Pain (ATIP) is working to enhance and clarify the definition of palliative care to include those suffering from chronic, intractable pain that may not be terminal. Cancer pain isn't necessarily different or anymore painful than the pain suffered by CRPS patients. Our pain is often worse, as there is no end in sight. The pain lasts a whole lifetime and we do not get better.

A case in point regarding the confusion over palliative care. A friend of mine was told that she qualified for palliative care. Great, one might think.  Her pain medication is still being prescribed, but her physician is afraid of losing his license and will not continue to prescribe her current dose or increase it. She will have to find a new pain management physician, assuming she can find one. 

I have been requesting for over two months that I be evaluated for palliative care, but my own pain management group "does not do palliative care." My case manager told me palliative care is only meant to keep the patient out the hospital.

My primary care physician's office has been working on my request and recently a doctor from Home Health Care came to my home to evaluate me. Not for palliative care, but for Transitional Care Management (TCM), a term I had not heard of. 

TCM is very much like palliative care in that the patient receives care from any needed medical specialty. A support system is put in place and whatever specialist I need to see will be covered.  The physician who did the evaluation based it not only on my medical records but by interviewing me and going over all my physical and mental health requirements. He noted I had been on high dose opioids and anti-anxiety medication and functioned with both them. He also recommended that my opioid medications be increased.

Will they be increased? I don't know yet, but a Home Health Care nurse will now be coming to my home on a regular basis. Unless I am unconscious and basically on death's door, I will not go to an emergency room for treatment. I refuse to wait hours on end only to be treated like a drug seeker. The nurse will come to my home and give me opioid medication if I need it. That is a definite plus and something I will not abuse.

These two avenues of palliative care and transitional care management appear to be a chronic pain patient's only options. Many doctors may not initiate either one. It is often the patient or patient's family who must push for care. Being alone and with no help means I will have to do more research and seek care even if it means contacting my physician's office multiple times. It’s the only option I have.

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Rochelle Odell resides in California. She’s lived for nearly 25 years with Complex Regional Pain Syndrome (CRPS/RSD).

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Help Us Get Our Lives Back

By Andrea Giles, Guest Columnist

I am a 49-year old disabled nurse living in Wyoming. Since 2010, I have been diagnosed with ankylosing spondylitis, phantom limb pain and severe osteoarthritis with multiple major joint deformities.  My remaining knee is now bone on bone, requiring me to use a wheelchair. 

I lost my right leg and half of my pelvis after a total hip replacement due to the osteoarthritis, after which I developed a severe MRSA bacterial infection that resulted in the total hip disarticulation. I’ve had horrible phantom limb pain since the amputation. I also had 2 failed spinal fusions, leaving me with chronic back pain and nerve damage. Since 2010, I have had a total of 52 surgeries.

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From 2010 to 2016, I was treated with opioid medication by a pain management physician, with a stable, safe, effective and legal regimen. I followed all of the requirements, such as urine drug tests, pill counts, using the same pharmacy, etc.

Then, at an appointment in 2016, my physician told me that because of the CDC guidelines, he would no longer prescribe opioid medication to me. I was forced off my high dose (120MME) cold turkey. I was lucky, as I didn’t experience withdrawal symptoms other than the reappearance of severe, intractable pain.

I tried to use NSAIDS for the pain and developed a severe, life threatening reaction to them called Stevens-Johnson Syndrome. I came very close to death and was in intensive care for 6 weeks. Because of that, I will be unable to take NSAIDs for the rest of my life.

Because of the MRSA infection, no physician will perform any further surgeries or steroid injections on me because of the risk of activating another infection.

I have tried acupuncture, massage, chiropractic therapy, mirror therapy, physical therapy, water therapy, many different herbal and nutritional supplements, aromatherapy, music therapy, psychotherapy, hypnotherapy and mindfulness. All without relief of the severe, intractable pain.

When I was forced off opioids, I also lost my career as a very good ER nurse. I went from a functional member of society to a home-bound, miserable person who hurts too badly to keep my house clean like I always prided myself on. Many days I’m in too much pain to even shower or complete daily activities of living.

My husband and children have lost the wife and mother they were able to interact with, go places with, share activities with, everything. I have gained 50 pounds because the pain has left me unable to exercise.

After I stopped taking opioids, I developed hypertension.  Before, my blood pressure had never been higher than 130/80. Now I take medication for high blood pressure and it is still usually around 150/90.

I also developed heart arrhythmia and last year suffered 2 sudden cardiac arrests. I only survived because both times they were witnessed by my husband, who is also an ER nurse, so he immediately started CPR. The cardiologist could find no underlying causes and told me that the arrhythmia and cardiac arrests were probably due to longstanding, untreated severe pain.

There is no physician that I can find that will accept me as a chronic pain patient and my primary care doctor refuses to prescribe opioids anymore. I have literally tried every pain management physician in Wyoming and in Montana, which would have required a 6 to 7-hour drive for each appointment.

I, along with many other intractable pain patients, are working feverishly contacting our congressional representatives, federal government and civil rights groups, begging for help -- for anyone in a position of power to hear our cries of medical abandonment and neglect.

Our pleas mostly fall on deaf ears, as the government has convinced the media and the public that pain patients are all addicts and use opioids only to get high. They site false overdose statistics and refuse to acknowledge that while opioid prescriptions have declined -- causing devastating effects on the pain community -- the overdose rate continues to climb because the clear majority of overdoses are due to heroin, illicit fentanyl or polypharmacy with multiple drugs.

Many intractable pain patients are committing suicide because untreated pain takes away their quality of life and the will to live – something they had with legally prescribed and effective doses of opioid medication.

We are desperate. We don’t want to get high. We just want to make informed decisions with our physicians about our own healthcare, to regain access to opioid medication, and to get our lives back!

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Andrea Giles lives in Wyoming with her family.

Pain News Network invites other readers to share their stories with us. Send them to editor@painnewsnetwork.org.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

The Difference Between Intractable and Chronic Pain

By Forest Tennant, MD, DrPH

The current attempts by a number of parties to castigate and humiliate pain patients and their medical practitioners is not just pathetic and mostly false, it is dangerous to the fate and life of many intractable pain (IP) patients.  If it wasn’t so serious, some of the claims, biases and beliefs would make good comedy.

First and foremost there has been no discussion about the difference between intractable pain and chronic pain.  There really is no bigger issue. 

The proper identification and treatment of the IP patient is not only essential for the health and well-being of the IP patient, it is a major key to the prevention of overdoses and diversion of abusable drugs.  IP patients must have special care and monitoring.  

The basic definition of IP is a “moderate to severe, constant pain that has no known cure and requires daily medical treatment.” 

Chronic pain, on the other hand is a “mild to moderate, intermittent, recurring pain that does not require daily medical treatment.” While there are millions of persons with chronic pain, only about 10% are intractable.

The cause of “intractability” is two-fold:

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  1. The initial injury or disease which initiated IP was severe enough to cause a pathologic transformation of the microglial cells in the spinal cord and/or brain.  It is this transformation that produces neuroinflammation and the constancy of the pain.  This process is known as “centralization” or “central sensitivity.”
  2. To have enough injury to cause “centralization” one must have a most serious disease or condition of which the most common are: adhesive arachnoiditis, traumatic brain injury, reflex sympathetic dystrophy, post-viral encephalopathy, or a genetic disease such as Ehlers-Danlos Syndrome, porphyria, or sickle cell disease.    

Medical practitioners must have minimally-restricted prescribing authority and autonomy to adequately treat IP.  For example, the proper treatment of IP not only requires analgesics, opioids and non-opioid, but specific anti-inflammatory, hormonal, and corticosteroid agents that will cross the blood brain barrier and control inflamed and pathologic microglial cells.  Treatment of IP has to be individually tailored and may require non-standard, off-label, or an unusual treatment regimen.  

Make no mistake about it.  The new treatment approach to IP is quite effective in reducing pain, controlling neuroinflammation, and allowing patients to biologically function well enough to have a good quality of life.  Also be advised that the new IP approach is not just reducing pain but treating the underlying cause of pain.  Consequently, a lot of expensive procedures, therapies, and opioids are no longer needed. 

As long as I am practicing I will continue to push forward this new approach.

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Dr. Tennant specializes in the research and treatment of intractable pain at the Veract Intractable Pain Clinic in West Covina, California, which remains in operation after recently being raided by DEA agents. Many of Dr. Tennant's patients travel from out-of-state because they are unable to find effective treatment elsewhere.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

When Is Pain Not Pain?

By Carol Levy, Columnist

Pain is not pain.” So says my new pain management doc. And he's right.

My main pain right now, the pain that keeps me disabled with trigeminal neuralgia, is from eye movement. Anything that requires sustained eye usage for more than 15 minutes results in horrific pain.

If I tell myself (what I think most of us tell ourselves when we are doing what we know will hurt later) just five more minutes, just four more emails or just one more chapter; I end up with horrific eye pain and become nauseated.  It is all I can do to walk the 20 steps to my bedroom and lie down.

It can get so bad that I often end up laying on my bed for 2 to 3 hours; working to not move my eyes and forcing them to stay completely still, an almost impossible task. I wait and wait, and wait some more, for it to calm down.

“Oh my God!” I cry out to my empty apartment. “The pain is so bad. I don't know what to do!”

Sometimes pain meds help by taking the edge off, but the wait for them to kick-in is excruciating. “When will this stop?” I demand to the air. “Why can't someone fix this for me!”

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The answer never changes. Total silence.

My new pain management specialist starts appointments with the question we all know only too well: “What does the pain feel like?”

I think about it.  I visualize how my eye feels and what physically happens when it is bad.

“It feels like pulling against the skin and a pushing of the eye against the lids, sometimes burning. Sometimes, it feels like if I could just shut the eye hard enough, which I never can, that would help,” I tell him.

After all those words, I realize there is one word I have not used: Pain!

We all know what pain is. It's the feeling you get when you break a bone, stub your toe, cut yourself, or eat ice cream against a bad tooth. That is what most people think of as pain.

What I feel, what many of us in chronic and intractable pain feel, is not “pain.” Not in any normal or accepted sense of the word.

Why do we not see new pain treatments, outside of the usual drugs and opioids?

It could be because the medical and research community is not studying or addressing our pain.

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Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.” 

Carol is the moderator of the Facebook support group “Women in Pain Awareness.” Her blog “The Pained Life” can be found here.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

DEA Raids Dr. Forest Tennant’s Pain Clinic

By Pat Anson, Editor

Agents with the Drug Enforcement Administration have raided the offices and home of Dr. Forest Tennant, a prominent California pain physician, confiscating patient records, appointment books and financial documents.

In a lengthy search warrant, the DEA alleges that Tennant prescribed such high doses of opioids and other medication that his patients must be selling them.  It also alleges that Tennant took financial kickbacks from Insys Therapeutics, a controversial Arizona drug maker that is under federal investigation.

An affidavit by a DEA investigator makes no mention of a patient overdosing or being harmed in any way while under Tennant's care.

“It’s very lengthy and it goes into things in my past which are totally irrelevant but are obviously designed to smear me and make me look like a bad person. I see what they’re doing,” Tennant told PNN.

dr. forest tennant (courtesy montana public radio)

dr. forest tennant (courtesy montana public radio)

Tennant, who has not been charged with a crime, believes Tuesday's raid is part of a broader effort to smear not only his reputation, but to discredit and intimidate other doctors who prescribe opioids to pain patients.  

“They’re not just going after me, they’re going after patients," said Tennant. “I think the country better understand what they’re doing here. They’re saying that regulations don’t count, standards don’t count, and they’ll decide who can get drugs and how much.

“I’d be worried about every pain patient right now, not just mine.”

Also named in the search warrant is United Pharmacy of Los Angeles and pharmacist Farid Pourmorady of Beverly Hills, the owner of United. Court documents indicate the DEA's investigation began in 2015 and targets a "drug trafficking organization" (DTO) that includes United and "multiple physicians whose prescriptions are filled at United, focusing in particular on Tennant."

"The crimes perpetrated by the DTO include the sale of powerful prescription narcotics such as oxycodone and fentanyl, along with other dangerous and addictive controlled drugs often sought in combination with narcotics, based on invalid prescriptions issued by practitioners including Tennant," the documents say. "United has been submitting millions of dollars in fraudulent Medicare prescription drug claims, namely, claims for the cost of filling invalid narcotic prescriptions, including those issued by Tennant."

The search warrant identifies about $2 million in prescriptions written by Tennant that were filled at United for just five patients, three of whom live out-of-state. Tennant told PNN in a phone interview that the allegations were bizarre.

"I have no financial relationship with anybody. My clinic is fundamentally almost a charity," he said.

Tennant is a revered figure in the pain community because of his willingness to see patients with intractable chronic pain who are unable to find effective treatment elsewhere or have been abandoned by their doctors. At 76, Tennant could have retired years ago, but regularly sees about 120 patients at his modest pain clinic in West Covina, a Los Angeles suburb. Many patients travel from out-of-state to see him, and some are in palliative care and expected to die within a year.   

Tennant, along with his wife and office manager, Miriam, jokingly refers to their clinic as a “mom and pop” operation, although in actuality he practices on the frontlines of pain management and has developed treatment protocols for difficult and incurable conditions such as adhesive arachnoiditis, Ehlers-Danlos syndrome and Reflex Sympathetic Dystrophy (RSD).

Those treatments sometimes require high doses of opioid pain medication, but they also include hormone replacement, anti-inflammatory drugs and other therapies that help patients reduce their use of opioids.

Tennant says he carefully screens his patients and follows all regulations. He has been an outspoken critic of efforts to limit opioid prescribing and recently appeared on a Las Vegas TV station saying the federal government doesn't care if pain patients suffer and die.

“I understand what (DEA is) after. They figure if they go after the big guy, then no one will prescribe,” Tennant told PNN. “If they’re going to hurt me, no doctor is going to be willing to prescribe or do anything. That’s what they’re attempting to do. They’re attempting to neutralize me if they can. And I think there needs to be an outcry.

"The time has come. Is this country going to treat pain patients or not? Are they going to let people die in pain or are they not?"

Ironically, the raid on Tennant’s offices and home occurred the day after he testified in Montana as a defense witness in the trial of another doctor accused of negligent homicide in the overdoses of two patients. The Tennants arrived home Tuesday night to find the front door to their home had been kicked in by DEA investigators.

“It seems like a coincidence, doesn’t it?” Tennant said.

Insys Payments

Tennant acknowledges getting about $126,000 from Insys Therapeutics, payments that were primarily for speaking at events sponsored by the company.

Insys makes an oral spray called Subsys that contains fentanyl, a potent synthetic opioid. Subsys is only approved for the treatment of cancer pain, but Insys aggressively marketed Subsys to have doctors prescribe it “off label” to treat other pain conditions, allegedly resulting in hundreds of overdose deaths.

Several company officials, including Insys’ billionaire founder, have been indicted on federal charges that they bribed doctors with kickbacks and lucrative speaking fees to get them to promote Subsys.  

Tennant says he stopped taking payments from Insys in 2015 and was dropped from the company’s speaker’s bureau last year.

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“What money we did make, we put in the clinic and used it to support the patients,” he said.

Tennant says he can still operate his clinic, but has been informed by the DEA that his charts and patient records will not be returned directly to him. Tennant is asking all of his patients to contact the DEA and request a copy of their medical records so that he can continue treating them. 

The DEA's contention that Tennant's patients are selling their opioid medication is preposterous, according to 64-year old Gary Snook, a Montana man who lives with adhesive arachnoiditis, a painful inflammation in his spinal nerves.

“The last thing I’m going to do is sell my medication,” says Snook, who was on an extremely high dose of opioid medication before he started seeing Tennant. “Dr. Tennant has me on such a low dose that I’m just barely getting through the month anyway. I don’t have any to sell.  

“He’s actually been able to lower my dose by about 80 percent, with his hormone therapy and stuff. I’m afraid these guys are sadly mistaken because he’s been moving patients in the opposite direction than they’re suggesting.”

Snook has a genetic condition that makes him a “high metabolizer” of opioids – meaning he has to take a high dose to get any kind of pain relief. His current daily dose is still about three times more than the highest amount recommended by the CDC.

 “I’m not selling mine. I’m just taking it to survive because it’s the only thing that works for my pain. I’ve tried all the modalities and unfortunately this is the only thing that works,” Snook said.

For the record, Dr. Tennant and the Tennant Foundation have given financial support to Pain News Network and are currently sponsoring PNN’s Patient Resources section.  

Doctor Makes California Pain Clinic a Special Place

By Kristen Ogden, Guest Columnist

Rarely have I spent five days engaged in doing work that left me feeling as fulfilled as my recent stint helping as a volunteer in Dr. Forest Tennant’s pain clinic in West Covina, California.

For the past 3 years, I have been privileged to volunteer whenever I have traveled with my husband, Louis, for his appointments with Dr. Tennant. However, this was the first time I have given much thought to exactly what makes a visit to Dr. Tennant’s clinic such a special experience for his patients and their families.

COURTESY  CORIN CATES-CARNEY/MONTANA PUBLIC RADIO

COURTESY CORIN CATES-CARNEY/MONTANA PUBLIC RADIO

Dr. Tennant and his wife and office manager, Miriam Tennant, sometimes refer to the clinic as a “mom and pop” operation.  If “mom and pop” makes you think of behind-the-times or unsophisticated, think again. 

Hidden in plain view, among the simple furnishings and interesting artifacts of a long career, is a true frontier in medicine, where discoveries are made, causes of rare diseases are pursued with vigor and, most importantly, a place where people suffering from constant pain are helped like nowhere else. 

One thing that stands out about Dr. Tennant’s clinic is the focus on family participation.  He requires prospective patients to be accompanied by a family member on their initial visits and encourages family members to attend.  The active engagement and participation of family is critical to a successful partnership with Dr. Tennant.  Patients and family members are required to sign documents to show their understanding of the off-label use of medications, willingness to participate in research, and acceptance of potential risks involved. 

The role of the family in supporting the patient is critical.  And why wouldn’t it be?  Intractable pain exacts its toll on the entire family.  A person suffering from undertreated severe pain becomes unable to function normally or participate fully in life.  Many face  loss of income, depletion of savings, routine tasks that don’t get done, loss of quality time with family, loss of contact with friends, and the loss of the ability to enjoy life.  Families with excellent relationships and coping skills are greatly affected. The impact on families less tightly bound can be enormous.  

I know many of Dr. Tennant’s patients and their family members.  They are just regular folks, nice people from all kinds of backgrounds, with one thing in common.  Somewhere along the way, their lives were hijacked by a rare illness or disease that bombarded them with unimaginable pain. 

Dr. Tennant’s embrace of patients extends beyond the walls of the clinic and the usual office hours.  During clinic week, you can expect to find him with Miriam enjoying dinner at a favorite restaurant with patients and family members, including many who traveled across the country and are staying in local hotels. It’s common to hear Dr. Tennant say, “We’ll be at Marie’s tonight around 7. Come join us for dinner.” 

Who has ever gone to see a doctor and gotten invited to dinner?  But that’s what he and Miriam do.  It’s another way they engage with families, and demonstrate their interest and care for patients.  They like to get to know their patients as people, not just names on a medical chart.

The informal group dinners bring other benefits.  For some, it is the first time they will meet others who share the agony of intractable pain or share the same illness. You may go to dinner wondering if you will enjoy an evening with strangers, and leave feeling like you have found a new extended family. 

Dr. Tennant always has some new diagnostic test or research study up his sleeve.  Recently, he asked patients to participate in a new DNA study of genetic indicators not previously studied in rare diseases that involve chronic pain.   Every new test and diagnostic tool reveals important information – hormone panels, nerve conduction studies, blood tests for inflammatory biomarkers, and MRI images that may reveal the presence of adhesive arachnoiditis.  

All of these diagnostic research efforts produce new insights.  For example, in a study of over 100 intractable pain patients who require relatively high opioid doses, Dr. Tennant found that 91% of them had genetic defects that impacted their ability to metabolize medications, suggesting why they need higher doses for effective pain relief. 

Another example is the growing understanding of the impact of pain on hormone levels.  Severe chronic pain initially elevates hormones, but if uncontrolled for too long, hormone levels become depleted.  Hormone levels that are too high or too low are biomarkers of uncontrolled pain, and indicate that higher doses of pain medications or hormone replacement may be necessary.  Ongoing clinical research is a key element of Dr. Tennant’s approach to pain care. 

In my visits with Louis to numerous pain doctors prior to finding Dr. Tennant, almost all of them said, “The goal is to get you off those pain medications.” 

I was shocked when I first heard Dr. Tennant say, “The goal is to relieve your pain.” 

Dr. Tennant has the expertise to “see” a patient’s pain and to ask the right questions. His discerning eye can distinguish between intractable pain patients and the few who come to the clinic seeking drugs for the wrong reasons. 

Dr. Tennant understands that most patients have already tried and failed at many different pain treatments.  When that is the case, he tries to determine what will work. The goal is to relieve pain so that the patient has a chance at meaningful improvement of function and quality of life.  There is no demeaning treatment, there are no words said that convey doubt or suspicion, there are no looks that say, “You must be a drug seeker.”  Dr. Tennant’s clinic is one of very few medical facilities I have visited where there was no evidence of stigma toward pain patients. 

An important piece of Dr. Tennant’s philosophy is that if you effectively treat the pain, improvements in function and quality of life will follow.  Dr. Tennant prescribes medication as needed to enable patients to effectively manage their pain, which in turn helps to stabilize their overall condition, while the underlying causes are identified and treatments are attempted.  If a patient’s pain remains undertreated, the likelihood of successfully treating the underlying causes is greatly reduced.

Transforming Pain Care

The Institute of Medicine’s 2011 report, Relieving Pain in America, called for “a cultural transformation in the way pain is understood, assessed, and treated.”  The characteristics I would seek in such a transformation of pain care are visible every day in Dr. Tennant’s clinic.  I wish that other doctors who treat chronic pain could get outside the bounds of their particular specialties and professional societies to view their patients differently. 

As Dr. Tennant’s research has moved forward, he has found that the majority of chronic pain patients who go to his clinic have 4 or 5 rare disease conditions:  adhesive arachnoiditis, post-viral autoimmune disease, Reflex Sympathetic Dystrophy (also called Complex Regional Pain Syndrome), and connective tissue disorders such as Ehlers-Danlos Syndrome.  All of these conditions are often accompanied by very severe, constant pain. 

In the last few years, Dr. Tennant has made great advances in identifying and treating the underlying causes of intractable pain.  He credits two recent scientific advances for enabling him to treat the causes rather than just the symptoms of pain. First, we now know that microglial cells within the central nervous system, once activated by a painful injury, disease or trauma, cause inflammation inside the brain and spinal cord.  This neuro-inflammation causes chronic pain to centralize in the spinal cord and brain, resulting in severe pain that is constant. 

Second, we now know that nerve cells may regrow, a process called neurogenesis.  Certain neuro-hormones in the brain and spinal cord can promote neurogenesis when neuro-inflammation is reduced.  Dr. Tennant’s approach is to reduce neuro-inflammation while simultaneously promoting neurogenesis.  His protocols for treatment of neuro-inflammation are in their early stage, but they are already providing disease regression, enhanced pain relief, less suffering, and, for some patients, reduction in the use of opioids. 

It is a true privilege to work as a volunteer in Dr. Tennant’s clinic.  When I asked him in 2014 if I could be a volunteer, I had two specific reasons:  to learn more so I could fight back against our insurance provider (who had suddenly decided to reduce the reimbursement for my husband’s pain medications), and to educate myself so that I could become an effective advocate for chronic pain patients.  We lost the battle with the insurance company, but I have certainly received an education that very few people have a chance to experience. 

Dr. Tennant’s methods and approaches are not proprietary -- he's eager to share them. There are many good doctors out there who could learn to do what he does, instead of focusing solely on the treatment of pain as a symptom. It doesn’t require a fancy clinic, lots of money, and corporate or university infrastructures.  What it takes is a doctor who is truly committed to relieving pain and practicing the art of healing. 

It is possible to manage pain with medicine instead of injecting the spine, inserting stimulators and pumps, or using other invasive procedures.  Instead of treating pain with these modalities, treat and relieve the pain with medication, stabilize the patient, and search for the underlying causes so that they can be addressed. 

At age 76, Dr. Tennant could have retired and given up his practice many years ago. Why does he put up with the many challenges of operating a pain clinic?  Because he truly cares about helping people who are suffering.

Kristen Ogden has advocated for her husband, a long-term intractable pain patient, for over 20 years.  She is the co-founder of Families for Intractable Pain Relief, an advocacy group for pain patients and their loved ones.

Pain News Network invites other readers to share their stories with us.  Send them to:  editor@PainNewsNetwork.org

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Living with Intractable Pain

By Lynette Shier, Guest Columnist

I am a true intractable pain sufferer. I got my condition over 30 years ago when a drunk driver in a van slammed into me while I was riding on the back of a motorcycle. I was 18 years old.

I should have died in that crash, but survived. At first, I was convinced it was a miracle and a blessing. I feel entirely different about it now, as the CDC opioid guidelines have led to many of us losing the only form of pain relief that works.

Unlike chronic pain, which can be a pain that lasts more than 3 months, people who have Intractable Pain Disease have a constant debilitating pain that doesn't go away. There is no surgery, procedure or medication that cures intractable pain. This type of pain is often unacknowledged, allowing it to go untreated or under-treated

I have contacted my state medical board and went to a public meeting to see if exemptions can be made for those of us who suffer from intractable pain. I also contacted the CDC to bring attention to this issue, only to be told I should see my doctor.  

My condition goes beyond anything a human being should be able to live with. I had multiple injuries in that crash, including my left leg being torn to shreds and amputated at the scene. I also lost two inches of femur (thigh) bone, shortening the stump that is left.

My pelvis had what doctors call a "vertical shear fracture” – it was completely broken from top to bottom, and essentially split in half. The surgeon said my left hand was crushed into "a million pieces." My arm was broken just below my shoulder joint.

LYNETTE SHIER

LYNETTE SHIER

I lost three-quarters of the blood in my body and was well on my way to the other side, but they flew me to a trauma center and performed 15 hours of emergency surgery, along with blood transfusions. They drilled holes into my hips, placed large pins into them, and then strapped me into a vice that pushed my pelvis back together until the fracture healed.  

I was in the hospital for 3 months and in physical therapy for years. I have lived with intractable pain ever since, raising children and working at jobs that even a healthy person would say are physically challenging. I couldn’t have done it without pain medication.

My body eventually began to give way to other complications. I now have bursitis, tendinitis, arthritis, neuropathy, degenerative disc disease, scoliosis, and root nerve impingement. My body is so crooked that I cannot walk correctly. I had to quit working in 2009.

After all these years of taking pain medication for my increasingly degenerating conditions, I need much higher doses than your average person can take or a physician would normally prescribe. This has caused me to be in a constant state of torturous pain and agony.

I have considered ending my life merely to end the pain a few times, but I cannot do that, as I am a fighter and will not give up that way.  

This is a travesty, and no human being should feel they need to do that to end their suffering when it can be prevented with proper treatment with pain medication.

If a patient commits suicide to free themselves from intractable pain, that should be considered a criminal act by the doctors who deprived them of medication and those who make the rules and guidelines at the CDC and the DEA. It is murder in my eyes.

There is no reason they can give me, and they have tried, that excuses the suffering they are causing people by taking away the only thing that brings them relief and makes them feel human. I'm not talking about junkies that are trying to get a fix. I'm talking about true intractable pain for which there is no shot, surgery, miracle procedure, or non-opioid medication that works, and the only thing that gives some relief is opioid medication.

No one should suffer from that kind of pain on a constant basis, and no one should be denied proper care for this condition. It is inhumane! If we had cancer or were terminally ill, they would have no problem giving us as much as we needed to keep us out of pain because its considered inhumane to allow suffering. Yet the CDC guidelines are doing just that, reducing quality of life and increasing human suffering.

They do not tell you that studies have shown that severe pain can kill you. It keeps your body in a constant state of stress, wearing down your body, organs and mind.

30 Years of Opioids Without an Overdose

The overdose statistics they keep are also not correct. A pain patient may die from a heart attack or stroke, but if they find opiates in the toxicology report they could classify it as an overdose, even when the patient has been taking opioid medication appropriately while under a doctor's care.

I have been taking pain medications for over 30 years, at doses that a normal person would probably overdose from, but I have never overdosed in my life. I am still under-dosed, as fear has taken over physicians.

This has made me housebound. I don't even want to get up and go to the bathroom, as I know it will cause me pain. It takes everything I have to get up every day, put a smile on my face, say a prayer, and do very limited things in my home. Just taking my dogs out or limping from my bedroom to the kitchen to get something to drink takes the life out of me. It's misery beyond what I would ever wish upon my worst enemy.

They worry about addiction. Well, if there is no cure for this condition and I'm to be in pain for the rest of my life and need medication for any kind of relief, what difference does it make if I'm addicted?

Someone has to do something about this, and by someone I mean ALL OF US WHO SUFFER! And all the physicians and pain specialists who know it is cruel and wrong.

I am attempting to start an intractable pain movement to bring more attention to us. Right now, there are too many different advocacy groups, websites, blogs, and videos. I see so many people out there who suffer and try to get their story out, but in so many separate places. I feel if we all came together in one place, maybe we could bring attention to this horrible situation and get things fixed.

We cannot just complain on these forums. We must show them what this is doing to us and our families. Stand with me and let’s fight for intractable pain relief. Make the CDC deal with this correctly before we all die of pain.

If you’d like to know more about living with intractable pain, please watch my video.

Lynette Shier lives in New Mexico.

Pain News Network invites other readers to share their stories with us.  Send them to:  editor@PainNewsNetwork.org

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Lynette Shier lives in New Mexico.

Pain News Network invites other readers to share their stories with us.  Send them to:  editor@PainNewsNetwork.org

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Why the CDC Needs to Recognize Palliative Care

By Barbara Nelson, PhD, Guest Columnist

A little over a year ago, the Centers for Disease Control and Prevention released its “Guideline for Prescribing Opioids for Chronic Pain.” Its goal is to help reduce the raging and heartbreaking overdose epidemic in the U.S.

Unexpectedly, the guideline has exposed the extraordinary need for palliative care for millions of patients who may live for decades with intractable pain. These patients now face enormous obstacles getting medically-needed opioids for effective pain control, especially when the dose exceeds the highest recommendation made in the guideline of 90 morphine milligram equivalents (MME) per day.

This unbending recommendation is too low to provide pain control that will keep many intractable pain patients out of agony.  In the last year, untold numbers of chronic pain patients requiring palliative care lost the correct opioid dose for their diseases -- making work, self-care, and family interactions harder or impossible.

I have seen this suffering, both personally and professionally.  I have an incurable and progressive neurological pain disease that, before diagnosis and some pain control, left me unable to read. My disorder profoundly changed my life as I previously knew it.

The dosage recommendations in the CDC guideline show no compassion for those with intractable pain, who will probably need higher opioid doses for the rest of their lives. Only later, when faced with terminal illness and imminent death, will official support for adequate pain control be acknowledged.

How Did We Get Here?

The objective of the guideline was to reduce opioid addiction and overdoses by limiting the dose and duration of prescriptions written by primary care doctors.

The guideline begins with support for “appropriate and compassionate” pain control for those with chronic pain.  It pays special attention to the chronic pain care needed by those fighting cancer, needing palliative care, or facing terminal illness. These three categories of pain are excluded from the CDC’s suggested highest daily opioid dosages because of their well-researched requirements for higher than average pain control, 

There is a problem to this approach, however.

The differences between these three categories are unclear to many doctors and patients. Most frequently, palliative care is confused with end-of-life or hospice care for cancer.  But palliative care is different from end-of-life care, because in palliative care there is no assumption of imminent death, nor is there a decision to withhold medication that might curtail the disease itself.

Chronic obstructive pulmonary disease (COPD), multiple sclerosis and sickle cell anemia are routinely considered diseases that can require palliative care, and these patients may live decades after their diagnoses.

The CDC guideline defines palliative care “as care that provides relief from pain and other symptoms, supports quality of life, and is focused on patients with serious advanced illness. Palliative care can begin early in the course of any serious illness that requires excellent management of pain or other distressing symptoms.”

Not all diseases requiring palliative care also require opioids.  But those patients who require both palliative care and opioids are virtually invisible in the guideline.  Invisible patients get neither appropriate nor compassionate pain care.

The Need for a Palliative Care Appendix

The CDC should produce an appendix for all prescribers – not just primary care doctors – that would help them provide fully adequate pain relief to palliative care patients with life-long pain rather than near-death pain.  

The appendix could start by examining the legislative or regulatory language used in the 13 states that define intractable pain and that allow higher than typical opioid dosing.  The appendix also needs to emphasize research on the most painful long term diseases, which will offer physicians a wider variety and more specialized array of treatment options than is available from a focus on generalized chronic pain. 

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The appendix could begin with the recognition that intractable pain patients needing palliative care do not get “high” or “euphoric.” Opioids are medicines that reduce pain and let them live closer to normal lives.

Helping physicians assist patients in organizing self-directed palliative care is another necessity, because most patients will not have access to a palliative care practice, let alone to one that is appropriate for their conditions. 

For patients with rare diseases, the CDC should emphasize the role of the doctor as learner as well as expert, as he or she must take the time to become familiar with a disease they may have never seen before. 

Yes, there may be some patients who attempt to scam the palliative care approach. However, I doubt that this kind of long-term pain is easily faked. The CDC guideline itself asks physicians to make dozens of new medical judgments. Acknowledging intractable chronic pain patients who require palliative care is just one more.

If the CDC does not add a palliative care appendix to the guideline, perhaps the American Academy of Pain Medicine, the American Medical Association or the American Academy of Hospice and Palliative Medicine could convene a group of all stakeholders to thoughtfully discuss the issues of pain treatment within palliative care.  Civil rights organizations that focus on inequality, including medical inequality, could contribute to this effort. 

Groups outside the CDC could also expand the mandate beyond training primary care physicians about opioid dosages, to include pain treatment for diseases requiring palliative care.

The conflict over opioid guidelines that are treated as laws or regulations, instead of recommendations, is not going away.  Several states, insurers and federal agencies have adopted versions of the CDC guideline, and others are sure to follow.  

Providing adequate pain control to palliative care patients would not make legislators, regulators or citizens any less committed to reducing misuse of opioid prescriptions.  In fact, drawing attention to palliative care would demonstrate a welcome dose of wisdom that millions of Americans would applaud.

Without an appendix to the CDC guideline or some other booklet that promotes correct palliative pain care, how will outstanding doctors be protected from unwarranted intrusions by insurance companies and drug enforcement organizations?  How will patients who deal correctly with pain that most people can’t imagine receive the palliative care that they deserve? They won’t.

The CDC’s “one-size-fits-all” guideline is bad medicine and bad policy. It ignores millions of intractable pain patients who require higher opioid doses.  

Everyone needs to recognize the importance of palliative care. You may need it someday. And unless changes are made, you won’t get appropriate medication either.

Barbara J. Nelson, PhD, is Dean Emerita of the UCLA Luskin School of Public Affairs and is Professor Emerita of UCLA’s Public Policy Department. She is the founder of The Concord Project, which builds social capital that allows people from divided communities to work together on projects of mutual benefit.

Barbara also directed The Leadership and Diversity Project, improving policy education and policy making through creative inclusion and enacted equality.  She served on the board of the Greater Los Angeles United Way.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.