A New Era for Genetic Medicine

By Barby Ingle, PNN Columnist

This past September, I attended several conferences for chronic pain awareness month. Most had the same speakers and the same topics, but a promising new development was discussed at one meeting: Genetic medicine as a treatment for painful diseases.

For those who are new to the concept of gene replacement therapy, this is a potential way to treat genetic diseases that would save time, pain, life and energy for anyone with a gene related health challenge.

New genetic therapies, such as gene editing and oligonucleotides, are already paving the way towards treating rare diseases. Gene therapy focuses on adding a corrected copy of a gene or directly altering a mutated gene, while oligonucleotides are synthetic molecules used to inactivate genes involved in the disease process.

I listened to leaders from patient advocacy and industry discuss the promise of these new approaches, including Bartholomew Tortella, MD, who is a leader in Global Medical Affairs at Pfizer and Pushkal Garg, MD, who is Chief Medical Officer at Alnylam Pharmaceuticals. It was interesting to me that pharmaceutical companies are on the cutting edge of gene therapies.

One of the things I learned is that genetic editing and remapping are “one and done” treatments. A gene fix can only be done once. No doubt it would be expensive, but if it works what is the price of 30 years of standard treatments to manage a condition vs. a one-time treatment that can reverse the actual underlying genetic issue?

I have had Prometheus and Color gene testing, and know that I have some life challenges of my own built into my genes. But learning about the potential of gene therapy gave me reason for hope.

There are already genetic therapies that are approved by the FDA for blind patients. Other genetic treatments will be coming online soon. We have been making advances with mice in research studies, and translating that into human clinical trials has now begun.

Would you want to get involved in the early stages of genetic testing? Or would you rather wait until its safety and effectiveness is proven? We won’t make progress without patients who are willing to volunteer and have their genes edited first. This is something that is a little sci-fi and scary to comprehend. It takes a special person to go first in these types of situations, yet the scientists I spoke with say the trials are being closely monitored for safety and efficacy.

One major challenge is that viruses are often used in gene replacement therapy to introduce the proper genes into the body. If a patient has previously been exposed to the virus, the new gene will be attacked by the body’s immune system and the treatment won’t work. If the therapy works, the virus is now in their body and it will not be a future option as a delivery system if the gene mutation returns or is not fully corrected.

Finding that Goldilocks zone for each patient will continue to be a challenge.

Barby Ingle lives with reflex sympathetic dystrophy (RSD), migralepsy and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics. More information about Barby can be found at her website.  

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.

Doctors Urge CDC to Clarify Rx Opioid Guideline

(Editor’s Note: Five healthcare professionals recently began circulating an open letter to the CDC asking it to make a “bold clarification” of its controversial 2016 opioid guideline.

They believe many chronic pain patients have suffered under the guideline, because it has led to widespread tapering and discontinuation of opioids. They invited other healthcare professionals to co-sign the letter. To date, well over 200 have.

To see a list of signatories, click here. If you are a healthcare professional and also wish to sign the letter, click here.)  

Authors: Health Professionals for Patients in Pain

Any professional who cares for patients, including physicians, pharmacists, nurses, psychologists and social workers, is invited to sign on to this letter, as are any professional organizations that wish to endorse formally. 

I. In 2016, the Centers for Disease Control and Prevention, CDC, issued a Guideline for Prescribing Opioids for Chronic Pain for primary care physicians. Its laudable goals were to improve communication between clinicians and patients about the risks and benefits of opioid therapy for chronic pain, improve the safety and effectiveness of pain treatment, and reduce the risks associated with long-term opioid therapy. The Guideline reflected the work of appointed experts who achieved consensus on the matter of opioid use in chronic pain. 

Among its recommendations are that opioids should rarely be a first option for chronic pain, that clinicians must carefully weigh the risks and benefits of maintaining opioids in patients already on them, and that established or transferring patients should be offered the opportunity to re-evaluate their continued use at high dosages (i.e., > 90 MME, morphine milligram equivalents).  

In light of evidence that prescribed dose may pose risks for adverse patient events, clinicians and patients may choose to consider dose reductions, when they can be accomplished without adverse effect, and with possible benefit, according to some trial data.  

Nonetheless, it is imperative that healthcare professionals and administrators realize that the Guideline does not endorse mandated involuntary dose reduction or discontinuation, as data to support the efficacy and safety of this practice are lacking.  

II. Within a year of Guideline publication, there was evidence of widespread misapplication of some of the Guideline recommendations. Notably, many doctors and regulators incorrectly believed that the CDC established a threshold of 90 MME as a de facto daily dose limit. Soon, clinicians prescribing higher doses, pharmacists dispensing them, and patients taking them came under suspicion.  

Actions that followed included payer-imposed payment barriers, pharmacy chain demands for the medical chart, or explicit taper plans as a precondition for filling prescriptions, high-stakes metrics imposed by quality agencies, and legal or professional risks for physicians, often based on invocation of the CDC’s authority. Taken in combination, these actions have led many health care providers to perceive a significant category of vulnerable patients as institutional and professional liabilities to be contained or eliminated, rather than as people needing care.  

III. Adverse experiences for these patients are documented predominantly in anecdotal form, but they are concerning. Patients with chronic pain, who are stable and, arguably, benefiting from long-term opioids, face draconian and often rapid involuntary dose reductions. Often, alternative pain care options are not offered, not covered by insurers, or not accessible. Others are pushed to undergo addiction treatment or invasive procedures (such as spinal injections), regardless of whether clinically appropriate.  

Consequently, patients have endured not only unnecessary suffering, but some have turned to suicide or illicit substance use. Others have experienced preventable hospitalizations or medical deterioration in part because insurers, regulators and other parties have deployed the 90 MME threshold as a both a professional standard and a threshold for professional suspicion. Under such pressure, care decisions are not always based on the best interests of the patient. 

lV. Action is Required: The 2016 Guideline specifically states, “the CDC is committed to evaluating the guideline to identify the impact of the recommendations on clinician and patient outcomes, both intended and unintended, and revising the recommendations in future updates when warranted”. The CDC has a moral imperative to uphold its avowed goals and to protect patients.  

Therefore, we call upon the CDC to take action: 

1. We urge the CDC to follow through with its commitment to evaluate impact by consulting directly with a wide range of patients and caregivers, and by engaging epidemiologic experts to investigate reported suicides, increases in illicit opioid use and, to the extent possible, expressions of suicidal ideation following involuntary opioid taper or discontinuation. 

2. We urge the CDC to issue a bold clarification about the 2016 Guideline – what it says and what it does not say, particularly on the matters of opioid taper and discontinuation.  

Signatories here represent their own views, and do not purport to reflect formal positions of their employing agencies, governmental or otherwise.

For questions regarding the letter, please contact Stefan G. Kertesz, MD, Professor of Medicine at University of Alabama at Birmingham School of Medicine (skertesz@uabmc.edu).

The information in this letter 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 Media Needs to Report the Truth About Rx Opioids

By Michael Emelio, Guest Columnist

Initially I was going to write an article about why we desperately need our doctors to fight for us. How they may be the only ones who will be able to convince the powers-that-be to stop punishing legitimate pain patients and open their eyes to the real consequences of reducing our access to pain medication.

While I believe doctors speaking out would help immensely, I fear that few will step up and make a difference. After talking to half a dozen pain management doctors this year, I believe that they have been so programmed by the anti-opioid propaganda that many believe they're doing the right thing and fail to realize the true extent of the suffering they have caused.

Tragically, it may only be when they've lost enough patients to street drugs or suicide that they’ll wake up.

We obviously don't have enough doctors fighting for us. Writing our congressmen and senators hasn't helped either. To make matters even worse, the mainstream media have failed miserably to report our side of the war on opioids. Most of the time they bombard the public with propaganda from the CDC and DEA.

But right now, the media may be our best and only chance to make people understand what happens when you take prescription opioids away from patients who really need them.

That is why we need to direct our protests at the media. Let’s start demonstrating at the front doors of newspapers, radio and TV stations, and other news outlets. Flood them with phone calls and letters to the editor until they can no longer ignore OUR side of the story.

We need to utilize the biggest tool we have and that is the media!

It's imperative that we get the truth out, until enough people are finally outraged to put their foot down. The whole country needs to know that the war on opioids is not only failing to reduce the number of overdoses but is making matters much worse. Millions of patients are suffering needlessly after having opioids taken away from them, leaving them no alternative for effective pain management other than street drugs or suicide.

That is what needs to be reported by the media.  And the only way these issues will ever get enough air time is if we put enough pressure on the media to do it.

What the hell is going on in our country? We're supposed to be the greatest country in the world, yet our government is directly causing millions to suffer needlessly. What is it going to take before the CDC and DEA realize they've gone too far?

Just how many easily avoidable deaths will it take to put an end this madness? Why is the mainstream media perpetuating this disaster by constantly reporting all the false facts rather than the truth? How many need to suffer and die before the truth is told?

Michael Emelio lives in Florida. He suffers from degenerative disc disease, scoliosis and fibromyalgia.

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.

When Home Feels More Like a Prison

By Mia Maysack, PNN Columnist

Recently, my primary care doctor recommended I go in for a “sleep study,” which is exactly what it sounds like. My immediate thought was, “I've been doing my own sleep study for 28 years, want to know what I’ve learned?”

But jumping through society's hoops is an art form that I've somewhat mastered, so let's flash forward to the appointment that took place weeks later.  

I’m in a closet sized room with a sleep study “fellow” -- meaning I'm going to sit there and essentially explain my whole life story to him, and then I get to do it again with the actual doctor.  

He's asking me about sleep, naturally, so I tell him there’s no sense of regularity as I am fortunate if I get a couple solid hours of sleep a night. I ordinarily never reach my REM cycle, so eventually my body will crash and burn -- resulting in too much sleep that's damaging to my natural rhythm and makes the existing problem worse. 

Chronic pain impacts every aspect of my life, but they have no interest in discussing that because this appointment is only about sleep. How is it productive to disregard the biggest motivational factor in the situation at hand?  Guess I'll have to go to medical school to find out.

Then comes the medication talk, which has actually gotten easier over the years as I've stopped playing the role of a pharmaceutical guinea pig -- hence there being less to discuss. All of the drugs he recommends I have already tried, and I am now only interested in holistic approaches.

This is when he brings up anxiety and depression, almost as ammunition against me -- or so it felt like. Do I consider myself anxious or depressed? How long have I been afflicted?  Then comes a whole new list of pill suggestions that are thought to help anxiety and depression. I feel like we are both wasting our time.

pain art courtesy of painexhibit.org

"Anyone would feel that way if they endured never-ending, agonizing pain,” I told him.   

He looks at my paperwork, sees that I've selected “homemaker” under employment and proceeds to say, “You don't work, so..."

This remark was declared in such a way as to suggest it is no wonder that I'm not tired, because I don't do anything all day.

"I actually work quite a bit," I objected and proceeded to list my duties.

I maintain the house while my lovely fiancé works. I cook, clean and do laundry. I have ownership over taking care of our doggy daughter, Aiva. I facilitate monthly group meetings, write newsletters, moderate online forums and volunteer countless hours. I also attempt to maintain a bite-size version of a social life and strive to make self-care a priority. 

Oh! And I live within a body that mostly feels as though it is deconstructing from the inside out.

He reported that naps are detrimental to our health, which is a comment I shrugged off because, clearly, he's never been chronically ill and has yet to be a parent.

People may peer into the window of my life and think to themselves how nice it must be to sit around at home all day while a man goes out to earn his keep as well as mine. But I've got some quick facts for anyone that would spend even a split moment envying the life of a chronic pain warrior.

I've been in the process of pursuing disability for just shy of four years -- which I began a decade after I really should have. But I was so hard on myself and likely a bit too proud, for this isn't at all the life I had envisioned. But I am grateful and committed to making the best out of it while demanding my ailments be validated.   

Prior to getting engaged, the place we live in was paid for in full by me. Even after becoming unwell to the point of stepping away from full-time work, I still continued to attempt working part-time outside of the home. But I was digging myself a hole in the ground, which led to the need of accepting even that was not in the cards, which led to the emergency need to access my retirement funds. 

I do not share this information for attention or pity but merely to drive the point home as to how crippling all of this can be on a person, especially over a long period of time. For some of us, home is less a place of tranquility and feels more like a prison.

Yesterday, I cleaned and organized our home, got laundry done, ran some errands and cooked a delicious healthy dinner. Today, I stayed in bed until 10:45 am, didn't leave the house, have difficultly navigating the stairs, hope to vacuum later if able, and have pain in every extremity. 

These are things that this fellow, as well as the doctor that graced us with his 30 second presence, didn’t seem to care about, let alone have the time to begin to understand. 

I'm thankful that I can do the things I can when I am able. It's imperative we take full advantage of the gifts we have while still able to do so, as we never know what tomorrow will bring. All it would take is a slight change in circumstance to make what may feel like the worst even worse.

Living as Spoonies, we are much too quick to accept being dehumanized. We even do it at times to ourselves.  May we all unapologetically let go of the weight of feeling we must somehow justify, explain, excuse or defend ourselves. Do what you can, where you are, with what you have, and know that is it both worthwhile and good enough.  

Benefits from my sleep study appointment include the mention of melatonin supplements, something I've tried in the past and will consider trying again, as well as “light therapy” to promote a regular internal clock which I plan to follow up on.

Mia Maysack resides in Wisconsin.  She lives with chronic migraine, cluster headaches and fibromyalgia.  Mia is the founder of a wellness and life coaching practice for the chronically ill, and was recently honored by the U.S. Pain Foundation as its “Pain Warrior of the Month.”

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.

Lessons from ‘Prescription Drug Diversion and Pain’

By Roger Chriss, PNN Columnist

The new book "Prescription Drug Diversion and Pain" is a textbook treatment of pain management and drug policy amid the opioid crisis. Written and edited by experts, the book is a scholarly, rigorous and evenhanded examination of the benefits and burdens of opioid pain medication.

Each chapter is written by specialists who address a particular aspect of the opioid crisis, with extensive footnotes justifying every statistic and claim. Much of that data, however, is admittedly flawed.

“As we show in this book, essential data about opioid abuse, morbidity, and mortality are lacking and what little data we have are derived from flawed and obsolete government databases,” the authors note in the preface.

“Yet, these resources are relied upon for public policy development, resource allocation, and lawmaking. In the absence of sound data, ingrained cultural feelings about addiction can become a powerful driver of attitudes, even among pain specialists who, despite their professional training and experience, may be influenced by such bias in their prescribing practices.”

The first chapters look at the history, regulation and monitoring of opioid prescriptions, and attempts to defuse the bias often associated with them:

"These medications are neither good nor bad absent context, despite the public tendency to oversimplify their use and mischaracterize their utility."

The origins of the opioid crisis are given due consideration. Rising rates of opioid prescribing are recognized as one factor, but drug diversion in the supply chain is also acknowledged:

“There is evidence that thefts from hospital and pharmacy drug supplies, as well as in-transit thefts from manufacturers and distributors, may also be a significant source of diverted opioids.”

Close attention is given to the issue of overprescribing and doctors who are “careless, corrupt, and compromised by impairment.”

But the book is also critical of the theory – expounded by the CDC opioid guideline – that reducing the number of prescriptions will help solve the opioid crisis:

“One might expect… that a decline in sales would produce a corresponding decline in overdose deaths. This has not occurred, casting doubt on the CDC’s original hypothesis. Several explanations are possible for this and may involve the recent increase in the use of street opioids like heroin and fentanyl analogs.

“Government databases for tracking nonmedical drug use and related health consequences are obsolete and lack the sensitivity to show which drugs, by chemical name and product formulation, licit or illicit, are responsible for the increasing overdose deaths.”

Later chapters explore opioid prescribing in detail and echo many of the themes of the CDC guideline:

“Not every patient who complains of pain needs an opioid or is a candidate for opioid therapy. Opioids should be prescribed only when the benefit outweighs the risks. Functional improvement should be a primary goal, along with improved sleep and mood, regardless of the therapy used.”

Indeed, the book goes to great lengths to discuss the risks associated with long-term opioid therapy, not just addiction but endocrinopathy, sedation, delirium, and bone loss. Many alternatives, from non-steroidal anti-inflammatory drugs and tricyclic antidepressants to cognitive-behavioral therapy (CBT) and acceptance and commitment therapy (ACT) are also described in detail.

The book laments the loss of interdisciplinary pain management programs, starting in the 1980s. These programs provided “a safer and clinically more effective alternative to opioids [and] have also been empirically associated with reducing patients’ reliance on opioids.” But the programs were costly to insurers and not profitable for medical facilities. Their disappearance “should be considered a contributory factor in the crisis of diversion and abuse and the associated destruction of lives.”

The book challenges areas of pain management and prescribing practice. A whole chapter is given over to the subject of urine drug testing, which is described as “an important element of an overall opioid-compliance program.” Because misuse of prescription drugs and use of illicit drugs is not uncommon among chronic pain patients, such monitoring is recommended. But the book cautions: “Other clinical indicators are needed before determining if a patient is nonadherent.”

The book concludes with its key idea, that there are no easy solutions:

"Given the complexity of the practice of pain management, the ‘opioid crisis’ cannot be solved, nor can conditions for pain patients be improved, using only simple and direct approaches: one medication, one regulatory policy, one law, or one injection will not be the answer for our chronic pain patients.

The government’s crackdown on drug companies and others in the pharmaceutical industry has had a negligible effect on reducing the morbidity and mortality resulting from the abuse of opioids.”

In other words, the opioid crisis and pain management are sufficiently complex that simple approaches are bound to fail. We need smart approaches. This book does an excellent job outlining the current state of knowledge to inform such approaches.

Roger Chriss lives with Ehlers Danlos syndrome and is a proud member of the Ehlers-Danlos Society. Roger is a technical consultant in Washington state, where he specializes in mathematics and research.

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 New Cruelty Rolls On

(Editor’s note: Rob Hale is a 52-year old Missouri man who lives with late-stage Ankylosing Spondylitis, a degenerative and incurable form of arthritis. We’ve written before about Rob and his difficulty in getting opioid pain medication – what he calls the “New Cruelty.”)

By Rob Hale, Guest Columnist

I’m here to talk about what happens when someone like me, who already is criminally undermedicated, gets seriously injured and must deal with the new procedures for treating chronic pain patients.

On August 16th of this year, I slipped and fell, breaking my neck.  I know, I know – bad idea. 

When I was brought into the hospital, they immediately hit me up with a dose of Narcan (naloxone), a drug used to reverse opioid overdoses. Narcan takes all the opiates out of your system in about 20 minutes, so you can feel every last iota of pain in your body. You also get to go through about a week’s worth of withdrawal pains in just under a half hour. Narcan is now standard operating procedure for any patient who comes into the ER with any form of opiate/opioid in his or her system. 

Anyway, back to the fun.  I was drifting in and out of consciousness due to the pain, while they took x-rays and CT scans of my neck. It turned out that I had a minor fracture, so they decided it was time to slit me from my skull to my mid back and put two, 12-inch titanium rods and 13 fittings and screws into my spine. 

I vaguely remember agreeing to this and putting my ‘X’ on some sheet of paper saying they could do it.  One thing I do remember clearly is I made damned sure that once the surgery was over and I was sent home, that I was going to get at least 6 and probably 12 days’ worth of pain medication.  I was assured of this not only by the neurosurgeon, but by all the interns and nurses who were attending me. 

I only spent 4 days in the ICU recovering from this nightmare of a surgery when they told me I was ready to go home!  I was shocked since they had just removed the wound drains that very day.  

But I really did want to get home and see my dog and my family, so I thought, “Okay, they must know what they’re doing, right?” 

I want you to guess what happens next, kids!

You guessed it – they were finishing up my discharge papers and I asked about my scripts.  They said that because I already had a pain management doctor, that is was up to him to provide me with the meds that I would need to recover from the surgery.  I explained, just as I had before the surgery, that my pain doctor was not going to be able to see me for several weeks, because his primary clinic is three hours away in Park City, Kansas and he is only in Kansas City one week out of the month.  Of course, I called him and begged for help, but to no avail. 

While I was recovering in the hospital, I was getting long-acting morphine 3x daily, plus immediate release oxycodone every 4 hours.  When I was released from the hospital, they gave me oxycodone to take every 6 hours, and no long acting morphine at all. 

Within 3 or 4 days, I lost the ability to use my right leg at all.  Having no other medication, nor any other recourse, I decided to use some of the methadone that I had left over from my last palliative care doctor. Unfortunately, it was about 10 years old.  But what was I to do?  It was that or hit the streets and try to get some illegal medication, which might have killed me since that crap is often loaded with illicit fentanyl. 

I was very careful to keep track of what I was taking, but I am guessing the methadone had gone bad, because I had a serious reaction to it and my dad called in the paramedics again. 

So, it was back to the hospital for me! Four days in ICU and 5 days in a semi-private room with a roommate who had pneumococcal pneumonia and a toilet that didn’t work, before I was  transferred to a nice, private room.  Only 2 days there, before they sent me over to a physical therapy facility across the street, where they tried to get my leg to work. 

All the doctors there were totally on board with the New Cruelty.  One actually told me that people who took more than 90 MME (morphine milligram equivalent) were at a much higher risk of death! It’s amazing to me how quickly they have disseminated this propaganda, and how completely the new generation of doctors have accepted it as the truth! 

This nonsense has gone on for years and I am becoming more and more despondent with this opioidphobic world. If you know me, you know that I live with chronic pain.  Not just any old pain, mind you – it’s really bad.  I have Ankylosing Spondylitis in its most advanced form, which more or less means that my spine, neck and sacroiliac are completely fused.  This has caused me daily intractable pain. I’m talking about pain that would drop the average person to his or her knees, praying to God to take their lives away just so the pain would stop. 

Adequate Care Phase

I am not attempting to elicit sympathy. It does nothing to ease the unending, merciless, wicked, 9 out of 10 pain that I live with day in and day out, 7 days a week, and 365 days a damned year. 

For many years, my pain was well controlled with morphine and hydromorphone. I was taking over 1,000 MME a day and never felt better in my life.  During this time, which I like to call my “adequate care phase,” which lasted almost 12 years, I never misused my medications and even went so far as to keep a journal listing every single pill that I took. My palliative care doctor can back me up on this. He was very surprised yet pleased to see how carefully I was using these drugs and how much respect I had for them.  I knew they were potentially deadly and dangerous, but while I was taking them – exactly as prescribed – I was every bit as lucid and well-spoken as I am right now. 

You see, when you have extreme amounts of pain, opioids go straight to the pain – they do NOT cause any type of high or euphoria.  I was able to participate in family functions, help around the house and assist my aging parents -- in short, to live a semi-normal, quasi-productive life.  I even opened my own little guitar shop out of my house, to make a little money to supplement my rather meager social security disability income. 

Then came the New Cruelty, in the form of a supposedly voluntary set of opioid guidelines from the CDC — or as I like to call them, the medical Gestapo.  According to the CDC, I was at high risk of overdose for over a decade because I was taking over 90 MME.

We are now at the mercy of a medical industrial complex that – in collusion with insurance companies and psycho-sociopaths in Congress – have created a fear-based campaign that they have dubbed the “opioid epidemic’ or “opiate crisis.” I firmly believe that chronic pain patients are being targeted for death by this campaign, either by our own hands or by medical complications that result from being woefully undermedicated. 

Rob Hale lives in Kansas City, MO. He was diagnosed with Ankylosing Spondylitis at the age of 27.

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.

Are You Skinny Fat?

By Barby Ingle, PNN Columnist

I recently was visiting my primary care doctor for my wellness physical -- something I haven’t done in many years. This was a comprehensive exam that took a look at all of my physical symptoms, including body fat to bone density ratio.

I have heard since childhood that a bit of prevention can add years to your life. A healthy lifestyle is not something many of us are taught, but it is something we can start at any age and gain benefits from. Take heart disease, for example. It’s the number one killer in the United States and accounts for one in every four deaths. Many chronic pain patients have cardiovascular, balance, breathing and body fat challenges. Treating these health problems is difficult, so preventing them from starting is key.

When was your last wellness physical? Did you talk about prevention?

My medical records from a one-hour examination with a nurse and two hours with the doctor were 18 pages long. I was checked for routine things such as my vitals, medication use and past medical history. Risk factors were also discussed such as alcohol and smoking. I do neither and never plan to anyway.

My doctor devotes more time to each patient so that we can go beyond normal primary care practices. He and his staff perform a comprehensive advanced health screening and diagnostic tests that have been shown to help detect issues earlier. The results help give a clearer view of your overall health.

We went over a lot as I have been a patient of his for about 15 years now. He is my lead treatment provider and knows my case better than all of my other doctors.

One of the most interesting things was him saying I look totally normal and healthy. Yes, that is called invisible illness. But after looking at all of my blood and diagnostic test results, he got deep into his analysis. He said I am “skinny fat.”

What is skinny fat you ask? It’s a totally unscientific term used to describe a person who appears to be a healthy weight, but actually has a high body fat to muscle ratio. For example, my arms are stronger and have more muscle mass than my legs.

My entire life I was eating poor. I was the one eating mac ‘n’ cheese, cookies, cake and soda. I was an athlete and had hypoglycemia until I was 29. Then I developed central pain syndrome (also known as full body Reflex Sympathetic Dystrophy) and went from being extremely active and working out daily to bedbound or in a wheelchair for almost 7 years. I have been limited in workouts and physical activities for the past 8 years, going in and out of remissive states.

It is important to remember that the scale doesn’t paint the whole picture as to how healthy you are. You can be obese and look totally healthy or have great muscle tone and thicker bones. Looks can be deceiving. Some studies suggest that up to 35 percent of people with obesity may be metabolically healthy.

The number on the scale doesn’t paint the whole picture of someone’s health. Being skinny fat is a prime example. In my case, I am metabolically obese, yet in a normal weight range. Although I am not diabetic or even pre-diabetic, my doctor said I still need to pay attention to being skinny fat and make changes. I need to get my fat levels down and my muscle level up.

Preventative measures like these need to be added to my lifestyle, despite having chronic pain. Not doing so can lead to health problems like insulin resistance, high blood pressure, high cholesterol and an increased risk for blood clotting. This study gives some great information on the risks of being skinny fat from a medical standpoint.

By the time I left my doctor’s office, I had a detailed action plan.

My plan is to get my muscle mass up and my fat mass down over the next 3 months. I don’t know if this is wishful thinking being chronically ill, but I am going to give it my best shot. The tips my doctor gave include moving more with cardio walks, stationary bike exercises, and lifting two-pound weights -- which should be enough to tone my muscles without triggering a pain flare. He also advised me to eat more protein and stop eating all of the processed food that filled my diet.

My doctor will redo the testing in 3 months and let me know what other changes I need to make or if this was enough.

When you see another patient who is super skinny, know that they may be struggling with their body composition as well, and they may actually not be as healthy as you are. I have struggled with being too low weight in the past.  Now I am in a normal range, yet too fat!

It seems like we all have something to work on. I wish that as a child I was taught these important preventative and life-prolonging lessons.

Barby Ingle lives with reflex sympathetic dystrophy (RSD), migralepsy and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics. More information about Barby can be found at her website. 

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.

A Pained Life: Tyranny of the White Coat

By Carol Levy, PNN Columnist

I saw a new neurologist this past week. He was a lovely man. Unfortunately, I was referred to him in error. He does not treat trigeminal neuralgia, so this was the first and last time I would see him.

That saddened me. Not only because I really took a liking to him, but because he did some things I have seen far too rarely.

He started our appointment by saying, “I have read your history.” Not only that, he had tried to contact my neurosurgeon to find out why I had been referred to him, since he did not treat facial pain. He had gone to the trouble to prepare for the meeting despite knowing he was not the right specialist for me.

Like many doctors, he dictated his notes into a recording device while we were together. From what he said, it was obvious he had read my history and recalled much of it. I was amazed when he would stop and correct himself.

Even more surprising was when he got something wrong and I shook my finger to signal “No.” Immediately he stopped and asked, “What did I get wrong?”

I’d explain the pain was on the left side of my face, not the right, and in the upper part, not lower. He listened and corrected his notes.

Usually most of the docs who do this dictation, ostensibly to make sure they get the information right and have me there to confirm, do not care if what they say is wrong. In fact, my main experience has been docs who say patently wrong information.

For them, I would hold up my finger, shake my head and mouth the words, “That’s wrong.” Invariably, the doctors would shake their heads and silence me with a “Shhhh.” No effort is made to correct or even ask what is wrong with their notes. As a result, the wrong information stays on the record and subsequent docs then approach us with preconceived ideas about things that are not true.

The last pain management doctor I saw decided I had had a history of major depression. He did not ask if I had a psychiatric history or diagnosis but decided this on his own. He did not dictate his notes while I was with him, but I saw it when I went onto the online portal where after-visit summaries are posted.

I thought he must have gotten confused. When he asked me about my family history, I had mentioned a relative who had a diagnosis of depression.

At the next appointment, I asked him to change the record. ““That is not my history,” I said. “You must have been thinking about my relative.” He seemed to agree -- and yet that “history” remains on my official record.

Is it an arrogance that too many docs develop? Is it a hardness, where the patient is almost irrelevant to the entire process? Is it because the patient is not a “professional,” so they can't be trusted even when it is their own history they are giving?

I don't know. I do know that it’s a sad state of affairs when you take a liking to a doctor because they took the rare action of actually listening, hearing and respecting you.

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.

Why I Am So Ashamed of Canada

By Ann Marie Gaudon, PNN Columnist

As far as countries go, I have lived almost the entirety of my life believing that Canada had a fairly good track record for upholding human rights. Of course, we’re far from perfect, but when I looked around the world I still felt grateful for where I am.

I no longer feel this way. Now I feel a deep shame for Canada and I believe that history will show this era with a rather large black mark etched in its pages.

Unfortunately for all of us, politicians and bureaucrats do not have a great history of getting things right. And they’ve really blown it this time.

We’ve got a real problem. Canadians are dying like never before from a tainted illicit drug supply. These political players never cared about people overdosing until they began dying en masse.

The government’s answer in the past was to round them up and put them in jail. Yes, punish them for being impoverished, mentally ill, homeless, and victims of sexual and physical violence. Punish them because they were neglected, abused or abandoned and consequently suffer from addictions trying to cope with their miserable lot in life.

Now they are dying from drug overdoses – far too many and far too quickly. The government’s answer: Let’s lock up and throw away the key to the prescription medication cabinet!

Instead of solving one deadly drug problem, now we have two.

Logic would dictate to policy makers that to solve the overdose problem, one should go straight to other countries such as Portugal that have done a good job of saving lives. Yet what have they done in Canada? They’ve jumped on the frenzied, anti-opiate, lunatic fringe bandwagon. Instead of listening to progressive professionals and those suffering from addiction, they are hell-bent on blaming pain patients and their medications.

Has this helped? Well, as prescriptions continue to decrease, and pain patients suffer more and sometimes die, overdose deaths continue to soar.

I invite you to join me in my personal attempt to spread awareness about the worsening plight of the severely pained in Canada. It isn’t a pretty story, but it’s one that has to be told.

I’ve created four informative videos and uploaded them to YouTube. My personal story is the first video and also includes the state of chronic pain in Canada in 2018. In the second video, I interview my friend Beth who had unethical medical treatment forced upon her. It is incredulous what the Ontario College of Physicians and Surgeons (CPSO) has done to Beth – and they accept responsibility for nothing at all.

Beth tells her story below:

Next up is Dan, who has been a chronic pain patient stable on pain medications for over 20 years. He is no longer stable. The CPSO terrified his doctor, who in turn forced Dan to decrease his medications. Dan is not doing well as a result.

Finally, Paul explains how he organized a town hall meeting between framers of the 2017 Canadian opioid guidelines, a representative of the CPSO and a few others. These folks were to be “silent attendees” and listen to severe chronic pain patients tell them how enforcing the new guidelines has negatively impacted their health and lives. The whole idea was admirable, but Paul ultimately learned the hard way that the lives of severely pained patients don’t seem to matter at all to the people who decided these issues for us.

So now you have an idea of why I am so ashamed of Canada. I would love it if you would listen to these stories and spread them far and wide. People need to know what’s going on here. I would also appreciate your comments. Let’s stick together, there’s always strength in numbers.

Ann Marie Gaudon is a registered social worker and psychotherapist in the Waterloo region of Ontario, Canada with a specialty in chronic pain management.  She has been a chronic pain patient for 33 years and works part-time as her health allows. For more information about Ann Marie's counseling services, visit her website.

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 Abyss of Chronic Pain

By David Hanscom, MD, PNN Columnist

One afternoon, I was listening to a pain patient attempt to describe the depth of her suffering, and it hit me how dark and deep this hole of chronic pain can be.

I had a flashback to my own experience with pain. Not only did I not know how I ended up in that level of misery, I had no hope and wasn’t being given any answers. I kept descending deeper and deeper into darkness.

Words couldn’t come close to describing my physical and mental suffering, but the image that came to mind was a deep dark abyss. I will never forget what it was like to be there and trapped in the abyss for over 15 years.

One night, I was driving across a bridge when suddenly my heart began to pound.  I couldn’t breathe, began sweating and became light-headed. I thought I was going to die. It was the first of many panic attacks. And it became much worse. I sank into a deep depression.

I honestly had no clue at the time that my anxiety and other symptoms were all linked together by sustained levels of stress hormones, such as adrenaline, cortisol and histamines.

I couldn’t sleep because of endless racing thoughts. My ears were ringing and my feet constantly burned. I began to get migraine headaches weekly. My scalp itched, and skin rashes would pop up all over my body and then disappear. I experienced intermittent crushing chest pain.

As unpleasant as these physical symptoms were, it wasn’t the worst part of the story.

I began a relentless search for answers. What was happening to me? My life went from being a hard-working young physician with a bright future to just trying to survive. As a spine surgeon in a large city, I had access to the best medical care and underwent all sorts of imaging and blood testing. No one could tell me what was going on. I became increasingly frustrated and moody.

After seven years of this, I lost my marriage. No marriage could have survived the obsessive energy I was using to try and escape from the abyss.

My anxiety progressed to a full-blown obsessive-compulsive disorder (OCD), which is characterized by repetitive and vivid intrusive thoughts. It was brutal. I had always thought that OCD was a joke, but it may be the worst mentally painful experience in human existence. I looked up the treatment and prognosis for it, and it was dismal.

My mind began to play tricks on me. I become an “epiphany addict.” I was sure I could find an answer if I looked hard enough. I read book after book, saw doctors, tried different medications, practiced meditation, and discussed my situation with anyone who would listen. That number grew smaller, as people got tired of listening to me and I became increasingly socially isolated.  

Every aspect of this experience was miserable but the loneliness I felt was the worst. Being alone, I had more time to think about my misery and became fearful that people didn’t want to be around me. I hadn’t realized how terrible being lonely could be.

I wanted to quit being a doctor, but my instincts told me to hang on. I still enjoyed performing complex spine surgery and running my practice. I liked my staff, colleagues and patients. In retrospect, that may have been the one thing that provided the structure to keep me going. My personal life had disintegrated.

As I write this column, I still feel woefully inadequate to find the words to characterize the intensity of my suffering. I was in this hole for over 15 years and crossed the line to end it all.

Learning How to Feel Good Again

Then in 2003, I picked up a book by Dr. David Burns, called “Feeling Good: The New Mood Therapy.” It’s about self-directed cognitive behavioral therapy.  Burns was adamant from the beginning of the book that the key to recovery was to start writing. His format is a three-column technique where you write down your disruptive thoughts, categorize them into one of 10 “cognitive distortions,” and then write down more rational thoughts.

I began to write for hours and for the first time in 15 years felt a shift in my mood and thinking. Burns is right, the act of writing is important. There are now over 1,000 research papers documenting the effectiveness of this approach.  

Six months after I began this therapy, I connected (badly) with my deep-seated anger and was completely miserable for about 2 weeks. But as I emerged from this fog, I began to feel better. All of my physical symptoms eventually disappeared, including my headaches, burning in my feet, anxiety, and tinnitus.

It all goes back to the stress hormones. When you are trapped by anything, especially pain, your body is exposed to sustained levels of stress chemicals and each organ will react in its own specific way. Today, my symptoms remain at minimal levels unless they are triggered, and I have learned how to quickly return to feeling good.

There are many additional layers to the healing journey that are presented on my website. Each person will relate to the concepts in a different way, but the outcomes have been consistently good. There is a recent research paper that shows simply learning about the neuroscience of chronic pain can significantly reduce it.

I got incredibly lucky and feel fortunate to be able to pass along these healing concepts to my patients. It has been an unexpected and rewarding phase of my career.

Dr. David Hanscom is a spinal surgeon who has helped hundreds of back pain sufferers by teaching them how to calm their central nervous systems without the use of drugs or surgery.

In his book Back in Control, Hanscom shares the latest developments in neuroscience research and his own personal history with pain.

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 Role of Suicide in the Opioid Crisis

By Roger Chriss, PNN Columnist

Suicide is an under-appreciated factor in the opioid crisis. Media reports rarely mention it, and pundits and politicians often ignore it. But the reality emerging from experts and a careful study of drug deaths shows that it is very important.

“We’ve done preliminary work suggesting that 22 to 37 percent of opioid-related overdoses are, in fact, suicides or suicide attempts,” Bobbi Jo Yarborough, PsyD, an investigator at the Kaiser Permanente Center for Health Research, told HealthItAnalytics.

Yarborough’s estimate is 2 to 3 times higher than the CDC’s. The CDC’s Annual Surveillance Report of Drug-Related Risks and Outcomes states that there were 5,206 suicides among the 47,105 poisoning deaths in 2015. This represents a suicide rate of 11 percent. The CDC gives similar data for 2016 drug deaths, estimating that only 8% were suicides.

Recognition of the importance of suicide in the opioid crisis has been slow to come.

In 2017, then-president of the American Psychiatric Association, Dr. Maria Oquendo, suggested that the suicide rate may be as high as 40 percent, writing in a guest blog for the National Institute on Drug Abuse (NIDA) that the risk for suicide death was over 2-fold for men with opioid use disorder and for women it was more than 8-fold.

Now, finally, interest in this issue is growing. The American Foundation for Suicide Prevention recently issued its first grant for studying suicide related to opioid use.

Kaiser Permanente also recently received a grant from NIDA to “examine the role of opioid use in suicide risk and develop better tools to help clinicians identify patients who are at highest risk.”  Kaiser researchers plan to use machine learning and analytics to predict the likelihood of a suicide attempt within 90 days of a primary care outpatient or mental health visit.

Fundamental questions about suicide in the opioid crisis remain to be answered.

"No one has answered the chicken and egg (question)," Dr. Kiame Mahaniah, a Massachusetts family physician, told NPR. “(Do people) have mental health issues that lead to addiction, or did a life of addiction then trigger mental health problems?”

Similarly, people with chronic pain disorders are thought to be “at increased risk for suicide compared with the general population,” as noted in a 2018 PAINWeek conference presentation.

But causality is also uncertain. At present it is not clear what proportion of suicides in the opioid crisis are due to despair, anxiety, addiction or the increasingly poor quality of pain care. There are many anecdotal reports of pain patient suicides, a tragically ignored feature of the crisis.

These distinctions are critical for public health policy in the opioid crisis. Current policy is largely geared toward restricting the opioid supply and monitoring legal pills after prescription. This does little to address underlying mental health issues, illegal drug use, or the impact of psychosocial or economic circumstances on people.

We need a clearer understanding of the opioid crisis, and that includes suicide.

Roger Chriss lives with Ehlers Danlos syndrome and is a proud member of the Ehlers-Danlos Society. Roger is a technical consultant in Washington state, where he specializes in mathematics and research.

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.

My Guidebook for Living With Chronic Pain

By Mia Maysack, Guest Columnist

Chronic pain can mean a lot of different things, depending on its severity on any given day as well as the seriousness of the condition that causes it. Those of us of who live with it are already at somewhat of a disadvantage, as opposed to others living more carefree lives.

Chronic migraines, for example, make it difficult for me to be able to complete even the simplest of daily tasks due to the confusion, pain, overall sensitivity and over-stimulation they cause.

This creates a mandatory “go with the flow” approach to life due to the unpredictability of symptoms. Plans, appointments, dates, commitments, family gatherings and social activities -- not to mention work -- are constantly needing to be changed, rescheduled or canceled. That gets old fast for us, as well as for everyone our absence affects.

There's no limit to how great of a ripple effect that can have. I have a personal nagging guilt I carry in my heart each time it happens. In an effort to alleviate the pressures, I've gotten to the point where I do my absolute best to avoid making plans.

I may live mostly feeling “under the weather” but at the end of the day and all throughout it I am still a person. I have agendas, hopes, dreams and goals, so please understand the disappointment and frustration I feel from continually placing everything on hold and being powerless to stop it.

Picture this: A thief breaks into your home in the middle of the night. Imagine watching this person tear your home apart, destroy so much of what you care about and worked hard for, yet you are unable to do anything to control the situation or make it stop. That criminal for me are my migraines. They steal a lot from me.

Several times now, I have had a successful life built only to witness the big bad wolf of head pain come and blow it all down. Then I am confronted with gazing upon the ruins my life and reflecting on how much it took to get there in the first place. I then decide that dwelling in the past will not fix or solve nothing, so I take a deep breath and clean up the mess yet again.  

There has never been an employment situation that has not been impacted by my illness. I'm a worker bee, but pushing myself so hard for so long has resulted in an inability to continue onward with my aspirations. The realization of not being able to live up to who you want to be is a tough one. One cannot refrain from inquiring within, “What is wrong with me?”

All the while, outsiders have the same question, most with a tinge of disbelief: “She looks and seems fine. What, if anything, is really wrong with her?” 

Taking Care of Me First

One of the greatest gifts I've ever given myself is taking care of me first. Whoever is meant to stand by you through this treacherous journey will always be understanding when you do. 

Think of it this way: When you know someone that you care about is feeling unwell, what do you do?  You offer support, advise them to rest, take the time they need, and do whatever is necessary for the sake of their health.

We as chronic pain sufferers deserve the same compassion, empathy, respect and self-care.  I've learned that forgiveness, patience and grace for ourselves is just as important as having those qualities available for others. 

Never once have I had a medical professional ask how I am doing in terms of coping with this heavy burden of a life-long condition. It has been an excruciating process to get to where I am now. There is no guidebook for living with chronic pain. So I created my own.

I prefer to find the positive in changes as they come and to not worry or over-analyze them after they've arrived. For me, it's all about finding the joy, beauty and blessing in the given moment. There is always something to be appreciated and admired.

There's no doubt that an underlayer of sadness accompanies our ailments and it's important for us to understand that is completely normal. It's also crucial to allow ourselves to truly feel that grief. There's no expiration date or time limit on learning how to deal with this crappy hand we have been dealt. We keep our poker faces on as we figure out how to conduct ourselves because folding up or giving in is will never be a suitable option. We are tough and have come too far to do that.

When it gets to be too much and you're not sure how much longer you can hold on, raise your stakes and tell the universe: “Let's do this. I am all in!”

Mia Maysack lives in Wisconsin. She is lives with chronic migraine and cluster headaches. Mia is a proud supporter of the Alliance for Headache Disorders Advocacy and was recently honored by the U.S. Pain Foundation as its “Pain Warrior of the Month.”

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.

Finding Common Ground With Another Pain Sufferer

By Peter Warren, Guest Columnist

I felt like a brother to a lady in Arkansas, after reading how Teresa Brewer has fought the battle against chronic pain caused by the extremely-rare retroperitoneal fibrosis (RPF), also known as Ormond's Disease.

After being weaned off opioids in March, Teresa is housebound and in unrelenting pain. She missed her daughter's wedding and misses seeing her two grandchildren. "I have no life," she wrote in her PNN column.

PETER WARREN

Teresa’s column jolted me. First, because I have also suffered from RPF for more than 10 years and had beaten the pain only by taking heavy doses of methadone. Secondly, because she underlined a major medical problem facing pain patients in the U.S. and here in Canada.

Teresa wrote that her primary care doctor had sent her medical records to 17 pain doctors, hoping they’d begin treating her. Not one has accepted her.

God, I thought as I read her sad story, I was lucky that my own doctor prescribed methadone for me so many years ago.

Like Teresa, I was also recently weaned off methadone and soon began having severe pains in my right leg and around my heart.

My doctor took tests, had me back into her office, and told me I now had Long QT Syndrome and would be prescribed twice daily doses of another opioid.

For the past several weeks, I have been oh-so-fortunate to be switched from one long-acting painkiller, methadone, to another long-acting painkiller, Hydromorph Contin, the latter probably for the rest of my life.

In a day and an age when so many patients across the U.S. and Canada are complaining about pain care and opioids being unavailable to them, I read of Teresa’s sad and painful journey. And I quietly gave thanks that painkillers have allowed me to proceed through a high-paced career in print, radio and TV journalism, into the joy of a quiet retirement with the woman I love.

Peter Warren lives in Victoria, British Columbia. In addition to his work in journalism, Peter was a radio talk show host and private investigator. He is a member of the Canadian Association of Broadcasters’ Hall of Fame.

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.

Diversion of Blame and the Opioid Crisis

By Richard Dobson, MD, Guest Columnist

The war on drugs is so frustrating and confusing! Why are people in pain forced to suffer? It just makes no sense!

I often see those comments from people who suffer from diseases or injuries that cause severe pain. I often feel the same way. But after years of bewilderment, I have come upon a clinical description that seems to describe the plight of people who suffer from chronic pain. Let me try to simplify this complicated and mystifying condition.

First, a brief overview of the current situation. There are five basic groups of people involved in the opioid crisis:

1. Pain Patients

These are the people who have medical conditions that cause them to suffer daily with torturous, disabling chronic pain. Many have found that opioids have given them a new lease on life, reducing the pain and enabling them to have some quality of life.

Then the CDC prescribing guideline came along and formalized a process in which these valuable pain medications were often withheld and pain sufferers were shunned by doctors.

2. Doctors

Doctors and other healthcare providers who prescribed opioids to treat chronic pain became targets of regulatory and legal sanctions. Some were forced out of practice by the suspension of their licenses. Others went to prison under the guise that they “overprescribed” opioids with no medical justification. Those who were not targeted chose to eliminate opioid prescribing or discharge patients who would benefit from opioids.

3. Drug Abusers

These mystifying actions occurred against a background in which an epidemiologically distinct group of people were becoming addicted and dying in increasing numbers. This group includes those who abuse opioid prescriptions, although most are using illicit substances such as methamphetamines, cocaine, heroin and fentanyl.

4. Drug Dealers

The suppliers of illicit substances, including those who produce fake pills and lace them with deadly poisons derived from fentanyl. The Drug Enforcement Administration has labeled them “illicitly manufactured opioids” (IMF) and they are now responsible for about 3 out of every 4 opioid overdoses. In Massachusetts, IMF’s are involved in an astounding 90% of overdoses.

5. Regulators, Insurers, Politicians and Media

The regulatory and enforcement agencies from federal, state and local governments, as well as politicians, insurers, news media and addiction treatment advocates, have all promoted actions that target chronic pain patients and the dwindling number of doctors who treat them.  It is this group that has the ultimate power to take effective action and disrupt the deadly supply of IMFs.

Diversion of Blame

Here is the basic scenario which entails a massive effort involving diversion of blame.

The drug abusers in Group #3 are dying in record numbers, even as opioid prescriptions have declined. These alarming deaths are caused primarily by poisons illicitly produced and distributed by the drug dealers in Group #4. But the regulators in Group #5 remain virtually silent about the IMF market and instead chose diversion of blame, targeting patients and doctors in Groups #1 and #2.

The consequences are horrible. People in Group #3 continue to die at escalating rates. People in Group #1 suffer horrible enhanced torture and many are having suicidal thoughts. And doctors in Group #3 are being driven out of pain management.

It is truly a bizarre scenario! But there is an actual medical condition that would help explain or at least describe these events. You have to keep an open mind and try to look at things with a perspective that is not warped by old, preconceived ideas. But here it is.

Munchausen Syndrome by Proxy

What if, instead of pain patients in Group #1, there were a group of children? And what if, instead of regulators and enforcers in Group #5, there were parents and caregivers? Ignore the other groups for the time being.

The same scenario -- only involving children, parents, and caregivers -- becomes a classic case of Munchausen Syndrome by Proxy. Those in a position of power (parents and caregivers) are imposing a factitious disease on children.

The official name for this condition is Factitious Disorder Imposed on Another (FDIA), a psychiatric disorder in which a person repeatedly and deliberately imposes an illness on someone else, even though they are not really sick.

In the case of pain patients, it is the regulators and enforcers who have FDIA and erroneously portray patients as responsible for the increasing number of overdose deaths. Patients are made to look like they have some disease that they do not have.

In the pain community, I believe there is no argument about this falsification and diversion of blame. Most people who take opioid medication are not drug addicts, just as most doctors who treat them are not drug dealers. Most pain sufferers and doctors have no idea how to even obtain IMFs.

While FDIA is classically used to describe the abuse of a child by a parent, the diagnostic criteria are not limited to child abuse. The criteria apply equally well to the abuse of people with chronic pain: The imposition of a factitious disorder (addiction, drug diversion) on a group of people who do not have that disorder (falsification of the medical condition) by someone in a position of power (the cohort of regulators, insurers, politicians, news media, and the addiction treatment community).

Factitious Disease Imposed on Another is both a perfect metaphor and a diagnosis for the ongoing diversion of blame in the opioid crisis -- the culprit that enables the medical torture of patients and perpetuates the rising overdose death toll.

Looking at the opioid crisis as another form of FDIA would give society a formal platform to make a more realistic assessment of pain patients who are falsely labeled as addicts and drug dealers. It could also serve as a framework to end the diversion of blame and redirect it towards more effective and constructive action.

Richard Dobson, MD, worked as a physician in the Rochester, New York area for over 30 years, treating and rehabilitating people suffering from chronic pain, mostly as the result of work or motor vehicle accidents.  He is now retired.  

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.

Disabled by the War on Opioids

By Michael Emelio, Guest Columnist

I am 53 years old and have severe disc degeneration spread throughout my spine and scoliosis in my lower back. As if that weren't enough, I've also been diagnosed with fibromyalgia.

I have been on opioid medication since 2001.  For over a decade the meds helped reduce the pain enough so that I could still work 40 hours a week, including some heavy lifting. But in 2013 the DEA shutdown the doctor I had been with for over 12 years, forcing me to find a new pain management doctor.

The new doctor not only refused to continue the meds that were working for me, but immediately cut my opioids by over 90% without tapering me down at all. My pain increased so much that I couldn't return to work, even for light duty.

When I asked the doctor why he wouldn't continue the prescriptions my previous doctor was giving me, he said and I quote, “Because of the crackdown on pain meds you're not going to find a doctor in this state will give you more than what I'm giving you now." 

Mind you, this was back in 2014, and was still less than the maximum 90mg morphine equivalent dose that the CDC started recommending in 2016. 

Little did I know that was only the beginning of my nightmare. Since back surgery wasn't an option, the doctor told me my only choice was to have epidural steroid injections.

MICHAEL EMELIO

I did some research and had legitimate reservations about the injections, but without being offered any other options and not wanting to be labeled a drug seeker, I reluctantly agreed. I couldn't afford to be out of work much longer.

The injections were administered a month apart. The first series did nothing for my pain and the second one actually increased the pain by over three-fold. This resulted in me becoming completely bedridden 24 hours a day and struggling to complete the most basic daily life functions. I'm not talking about doing laundry and cleaning house. I'm talking about just feeding myself.

This left me unable to do any kind of work whatsoever, let alone return to my regular job of over 7 years, where I was working towards retirement. When I asked the doctor what was I supposed to do now, his response was, “Have you considered applying for disability?"

Unless you've been here, you cannot fathom the level of shock and horror that I felt at that moment, yet alone the level of injustice and outrage. A word that comes to mind is appalled, but that doesn't even begin to describe it. I went from being an able-bodied worker to disabled and bedridden 24 hours a day.  And for no other reason than the War on Opioids!

To be perfectly clear, I didn't take illegal drugs and I never abused, gave away or sold my prescriptions. I passed all my drug tests, never had a record of drug problems, or even a DUI. I didn't even drink alcohol. I did NOTHING to give them any reason whatsoever to take my medications away.

My current doctor is currently weaning me off the last of my opioids, stripping me of the last tiny bit of medication that have any effect on my pain. What little quality of life I have left is about to be taken away completely.

The only thing I can do now is pray that I am able to hold on and not become another suicide statistic after being forced to live in agony day-in and day-out. All because of the barbarically handled, totally blind, and uncompassionate War on Opioids.

Don't get me wrong. I'm not against fighting drug abuse and addiction, I'm just against the way it's being fought. Taking these medications away from people who have proven they need and use them responsibly will fail to have any impact whatsoever on the addicts who are abusing them.  It only serves to punish the honest and innocent. Why should I be punished and forced to live a life of pain, misery and indignity when I have done nothing wrong?

With the help of opioids, I was still very active and happy, enjoying things like riding motorcycles, jet skiing, and even paragliding. Although recently becoming single, I had no reason not to hope for eventually finding the right woman and living happily ever after.

But I've been robbed of all of that now. I am bedridden and struggling to survive on nothing more than disability income. My pain has tripled thanks to the unnecessary and unwanted steroid injections, and for no other reason than the fear instilled in my doctor by the DEA and CDC.

And it's still not over. The only thing my doctor is offering now is more of the very same injections that put me here in the first place and robbed me of my life.

What keeps me fighting is the sheer anger and outrage that I have for the injustice of it all. If you are a doctor, DEA agent, politician, or anybody else who is not a chronic pain patient – then take a minute to realize that you are only one car accident, one slip, or one fall away from this happening to you.

STOP THIS MADNESS!

Michael Emelio lives in Florida.

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.