The Power of the Pen

By Michael Emelio, Guest Columnist

It's my hope that this column can serve as a powerful example of the harm that can be caused when people are denied adequate pain management. And in so, I pray that it also serves as a lesson to doctors and is something that our lawmakers, CDC and DEA will take a moment to seriously consider.

To understand the full magnitude of the damage that's been caused, I implore you to read a guest column I wrote last year, in which I described how the opioid medication I take for intractable back pain was rapidly tapered to a lower dose, leaving me bedridden and disabled.

It's high time that the harm being inflicted on me and other innocent victims of the opioid crisis is both acknowledged and stopped!

While I can totally sympathize with a doctor's fear of repercussions from the DEA, there comes a point where it's no longer a valid or acceptable excuse. One of those points is when a doctor, with no medically valid reason, refuses to sufficiently treat a person's pain and it results in harm to that patient.

And when a doctor refuses to prescribe a reasonable opioid dose (especially one that is within the CDC opioid guideline) and it causes a patient's condition to significantly worsen, how are they not responsible for that harm?

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Speaking with other patients, I've been hearing a familiar story quite a bit lately. So much in fact, that it appears to be becoming an epidemic. Doctors with no medically valid reason are either failing or refusing to prescribe even within the CDC’s 90 MME guideline, while using the same old "well the DEA threatens to take our licenses away" excuse. 

Not only is it getting old, but it's getting people hurt and worse. And when I say that excuse is killing me, I may just mean literally!

Since the tapering started, I've gained 55 pounds and my blood sugar and cholesterol have soared to alarming rates. So in addition to all the things I can no longer do and my pain and suffering increasing, I'm now at risk of both heart disease and diabetes. Irrefutably, this is a direct result of being bedridden 24 hours a day due to the med cuts.

But it doesn't stop there. Adding insult to injury, these med cuts are also robbing me of the only chance I have to improve my condition.

Surgery Not An Option

It cannot be emphasized enough that I've seen several highly-acclaimed surgeons, who are absolutely unanimous in what options I have. They've all said the same thing: Surgery is not an option for me and due to the nature of my condition I should avoid any invasive procedures as they can make my pain worse. This includes spinal injections, radiofrequency ablation, spinal cord stimulators and pain pumps, to name a few.

They've all said that the only viable options I have left are pain meds and physical therapy. The latter is essential because “mobility is crucial to help reduce the pain and improve function.” And to slow my rate of deterioration, I should do “as much physical therapy as possible." 

So by denying me the ability to complete physical therapy due to his forced med cuts, my doctor is not only robbing me of my only chance for improvement, he is directly causing my condition to worsen at an accelerated rate. Despite explaining all of this to him, my doctor informs me that he still plans on reducing my meds even further!

On what planet does this make any sense whatsoever? When you consider all the aspects of my condition and the damage the previous met cuts have already caused, how can this be helpful in any way, yet be a necessary or even a reasonable course of action?

Especially when I'm only at 60 MME, which is considerably less than the CDC's 90 MME guideline. Furthermore, I've been a patient of his for over a year and a half and have proven to take my medications responsibly the entire time, as well as the previous 18 years I've been in pain management.

Because of the CDC guideline and the fear instilled by the DEA, my doctor is covering his ass and slowly killing me.
— Micahel Emelio

Think about this for a minute. I have a medical need for pain meds because of an incurable condition that is causing such severe intractable pain that I'm bedridden to the point that I struggle to care for myself properly. It’s also a condition where surgery and invasive procedures are not an option, all other methods and medications have failed, and the only chance for improvement is through physical therapy. Then add the fact that my health is in a serious state of decline as a direct result of the med cuts, and he still wants to cut them even more?

Unless you're in this boat yourself, you can't fathom the level of stress this causes. I'm literally afraid I may have a heart attack from it.

You have to understand the impact that just one more med cut would have on me. I live alone, have no one to help me, and with the dose I'm currently at, I'm already struggling most days just to microwave a TV dinner, yet alone clean my house or even care for myself properly. If he cuts my meds any further, the effect it will have on my life will be devastating.

As I sat in my car outside his office, the only thing I could think about was that if he reduces my meds any further, not only will my pain be unbearable, but I won't even be able to care for myself anymore. Being alone and poor, I only see two options at that point: street drugs or suicide. 

Make no mistake. That is the hand that is being forced on people when intractable pain is not treated!

Never in a million years could I have imagined being in this position. But sadly, this is my reality. And the truly astonishing part of it all is that he could stop all this damage and immensely change my life for the better tomorrow, simply by prescribing 2 more tablets a day, which would still be within the CDC guideline.

But no! Because of the CDC guideline and the fear instilled by the DEA, my doctor is covering his ass and slowly killing me. It's both staggering and terrifying knowing how much control he has over my life with just the swipe of his pen.

Which brings me to an interesting point. In medical school they teach about a thing they call the "power of the pen." It means to make sure that what they prescribe doesn't cause harm to the patient. I just wish my doctor realized that the power of the pen works both ways!

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Michael Emelio lives in Florida. Michael lives with severe degenerative disc disease, scoliosis and fibromyalgia. He has safely used opioid medication since 2001.

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.

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.