What ‘Rocketman’ Tells Us About Pain and Addiction

By Lynn Webster, MD, PNN Columnist

“Rocketman” is a new biopic about the legendary singer Elton John. The emotionally-driven musical fantasy takes some liberties with certain details of John's life, but it illuminates an essential truth: childhood trauma can lead to pain, addiction and other severe health problems.

The movie is generating some Oscar buzz, but it offers more to viewers who want to see how painful childhood experiences can adversely affect people when they become adults.

The film begins with the flamboyantly wealthy and gifted Elton John strutting down a hallway -- in full costume complete with a colorful headpiece from a recent stage show -- to his first Alcoholics Anonymous meeting.

He becomes the center of attention at the AA meeting when he begins to describe -- through flashbacks told, in part, through song and dance -- his childhood, which was devoid of love and acceptance.

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Elton John is a musical prodigy, but his talent couldn't save him from the harm caused by a father who rejected him and a mother who didn't protect him. As John told The Guardian, "My dad was strict and remote and had a terrible temper; my mum was argumentative and prone to dark moods. When they were together, all I can remember are icy silences or screaming rows."

As John remembers it, "The rows were usually about me, how I was being brought up."

How Childhood Trauma Affects Health

In her TED Talk, Dr. Nadine Burke Harris describes how childhood trauma can affect health over a lifetime — laying the foundation for seven out of 10 leading causes of death in the United States, including addiction and even suicide.

As Dr. Harris points out, our healthcare system treats childhood trauma as a social or mental health problem rather than as a medical issue. Doctors are trained to refer traumatized children to specialists rather than providing intervention and treatment themselves. But childhood trauma may lead to serious medical problems and can even reduce life expectancy by 20 years, according to a study published in the American Journal of Preventive Medicine.

The CDC’s Adverse Childhood Experiences Study (also known as the ACE Study) defined and examined this problem. The study acknowledged 10 types of childhood trauma, including verbal, physical, and sexual abuse; parental rejection and neglect; mental illness or incarceration of a family member; divorce; and substance dependence.

Of the 17,000 adults who participated in the study, two-thirds had experienced at least one of these childhood traumas. Eighty-seven percent had lived through more than one. The consequences of this can be staggering. People who experienced four childhood traumas were 2.5 times more likely to have pulmonary disease and hepatitis. And they were four times more prone to depression and had 12 times the risk for suicidality.

“Adverse childhood experiences are the single greatest unaddressed public health threat facing our nation today,” says Dr. Robert Block, President of the Academy of Pediatrics.

Trauma Rewires the Brain

Adverse childhood experiences rewire the brain. The heightened response to stress that some children develop can affect the reward center of the brain and the executive functioning of the prefrontal cortex. It can also result in maladaptive behaviors associated with pain and addiction.

About a decade ago, Dr. Norman Doidge provided an understanding of how our brains have the capacity to change in his book, “The Brain that Changes Itself: Stories of Personal Triumph from the Frontiers of Brain Science.”  His highly acclaimed research offers scientific hope that there is treatment for the adverse effects of childhood trauma and chronic pain.

Dr. Doidge describes neuroplasticity as the process through which an injured brain can heal itself. An example of this healing process was reported by National Public Radio's Patti Neighmond. It is called emotional awareness and expression therapy (EAET).

Developed in 2011 by psychologist Mark Lumley and Dr. Howard Schubiner, EAET combines talk therapy with cognitive behavioral therapy to change brains that have been structurally altered by trauma. The NIH’s Pain Management Best Practices Inter-Agency Task Force has recognized EAET as potentially beneficial to some people in chronic pain.

Preventing the Need for Drugs

“Rocketman” reflects more than the consequences of a single individual's traumatic childhood. It illuminates a broader social problem that sows the seeds for substance use disorders in adults. 

The approach we take to solving substance use disorders today is focused on treatment and law enforcement. Neither approach seems to be curbing the problem, which suggests the need for a better strategy. Long-term solutions to substance use disorders must include prevention. This means we need to understand what creates the demand for drugs.

Elton John’s story poignantly illustrates two of the causes of addictive behavior:

  1. Memories of pleasurable experiences are the reason drugs are repeatedly abused

  2. Memories of painful life experiences are commonly the genesis of drug initiation

There is compelling evidence that the trajectory of our mental and physical health begins with how we are treated as children. It may seem Pollyannish to say this, but our first line of defense is to love and accept our children, regardless of their gender identity, abilities or individual traits.

As “Rocketman” testifies, anything else can set children on the path to developing a substance use disorder and, in some cases, chronic pain. 

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Lynn R. Webster, MD, is a vice president of scientific affairs for PRA Health Sciences and consults with the pharmaceutical industry. Lynn is a former president of the American Academy of Pain Medicine, author of the award-winning book “The Painful Truth” and co-producer of the documentary “It Hurts Until You Die.”

You can find him on Twitter: @LynnRWebsterMD.

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

Why Do Doctors Keep Pushing Invasive Procedures on Me?

By Mike Emelio, Guest Columnist 

I'm not a cynical person by nature, but I'm seeing a very clear pattern with interventional pain management doctors. Why is it that every doctor I've seen who is certified in interventional pain medicine (at least 8 of them already) demonize opioid medication and insist on pushing their non-FDA approved injections, radiofrequency ablations, pain pumps and spinal cord stimulators? 

This approach is even more absurd when you consider the fact that invasive procedures tend to have low rates of efficacy and are known to create scar tissue and nerve damage, both of which can cause more pain.  

As if this weren't ridiculous enough, in spite of explaining to these doctors how epidural steroid injections not only didn't work for me, but robbed me of my life by tripling my pain and making my condition much worse (see “Disabled by the War on Opioids”), every single one of the doctors I've seen still tries to push more of those injections on me.  

My head spins every time I hear them try to sell me on more injections. Are they deaf, insane, just trying to make their wallets fatter, or all three?

On what planet does it make sense to do more of what made a thing worse

Ever since my life was ruined by those injections 5 years ago, I've been desperately trying to find a doctor who truly cares about my well-being and wants to help me. My search has been fruitless so far.  

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Sadly, it just keeps getting worse. The latest doctor I started seeing keeps pushing a pain pump on me. That is as absurd as it gets. Multiple doctors have told me that the reason those injections made my back pain worse is because they caused adhesive arachnoiditis or nerve damage – both of which can be made worse with invasive procedures.  

Why would any doctor push a pain pump on me? I could understand it for a patient with a history of drug abuse, but that is not the case with me. Not only do I have zero history of drug or alcohol abuse, but I have taken my pain meds responsibly for many years. Why should I submit to being put under anesthesia, cut open and have a device implanted in me, all which can have serious complications, when I can get the same medication in a pill that I took responsibly for many years? 

All of the surgeons say that my best option for improved quality of life is pain medication and staying as active and mobile as possible. Yet every interventional pain management doctor ignores their advice and pushes for injections, spinal cord stimulators or pain pumps. Why would they do that?  

It's simple.  According to my Medicare statements, a doctor makes about $75 per visit to write and maintain prescription medications. But with the injections, it's $1,000 and up!

Many times I've personally seen doctors perform unnecessary tests that pay them a lot of money and only for that reason. This is not just my opinion, as other doctors I've seen have confirmed this. Not all doctors are like this and I wouldn't even venture to say most, but the fact is there are plenty of them out there. 

I'm not saying any of this to bash doctors. I'm sharing this information in hopes that people take the time to get educated, be vigilant and be their own advocate when it comes to their healthcare. Doctors are only human. They're just as susceptible to flaws is anyone else. I can't impress enough on all of you to look out for yourselves and get second, third, fourth and fifth opinions if needed.

They took away what was working for me and used a non-FDA approved procedure on me that wasn't even designed for what they were using it for. It crippled me, robbed me of my ability to work, forced me into a life of poverty and disability, and took away my freedom, my dignity and my ability to properly care for myself. 

I don't post any this for sympathy. I am only trying to educate and inform people about what can happen if they put too much faith in doctors without doing some research. What happened to me is a prime example of just how essential it is that we patients be as proactive as possible, be our own advocates and protect ourselves. 

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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.

Why Stem Cell Critics Are Failing

By A. Rahman Ford, PNN Columnist

In a recent and rather lengthy New York Times article entitled “Stem Cell Treatments Flourish With Little Evidence That They Work,” authors Denise Grady and Reed Ableson do their absolute best to convince their readers that stem cell therapy (SCT) is based on strange, magical hocus-pocus, and its practitioners are all mad scientists. 

They portray stem cell clinics as shadowy castle dungeons lit only by the occasional lightning strike, and filled with glass beakers that froth with fluorescent-colored liquids.  The authors even use the phrase “unproven cell cocktails.”  That little piece of anti-SCT propaganda even scares me a little, and I’ve had SCT.

In the article, the authors trot out the same tired, empty and underhanded tropes that all articles of its ilk like to employ:

  • “no clear evidence that these treatments work”

  • “gotten way ahead of the science”

  • “no regulatory oversight”

  • “rogue clinics”

  • “scant data”

  • “not covered by insurance”

  • “high risk”  

  • “lack of solid medical evidence”

  • “snake oil”

A recent New Yorker article isn’t much different.  Both articles do contain some valid points, but those points are obscured by the scare tactics, fear-charged language and cherry-picked patient cases.

These SCT hit pieces appear from time-to-time, but rarely in publications with the broad readership of the New York Times and the New Yorker.  After reading so many of them over the years, I began to wonder – if stem cell clinics are flourishing, then isn’t that a tacit admission that the fear-mongering isn’t working? 

And if the fear-mongering isn’t working, why do they keep publishing these less-than-objective articles?  

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Maybe it’s because they feel like they are part of some consumer protection vanguard to protect Americans from sleazy medical charlatans.  Or maybe it’s because the scare tactics have failed and they have no idea what else to do. 

The fact is, as I wrote in a recent PNN column, the SCT tipping point appears to have been reached. The American public simply isn’t buying what the critics are selling. As many as 1,000 stem cell clinics are now operating in the United States, according to The Washington Post, which predicts the industry is “likely to flourish” despite a judge’s ruling that upheld the FDA’s authority to regulate — and stifle — the industry.    

The Basquiat Effect

But it gets even worse for the anti-SCT purveyors. They may be suffering from what I refer to as the Basquiat Effect.  Jean-Michel Basquiat was a graffiti-inspired painter, sculptor and musician who rose to prominence in the 1980s in New York City. 

Basquiat’s work is laden with social and political commentary, with primordial figures, abstract arrangements and linguistic devices.  One of his more popular motifs was to write words and cross them out. 

Why did he do this?  As quoted from the documentary Jean-Michel Basquiat: Radiant Child, “I cross out words so you will see them more.  The fact that they are obscured makes you want to read them.”

One of Basquiat’s paintings recently sold for $110.5 million.  He was clearly on to something.

Put simply, the Basquiat Effect holds that the more one tries to hide something, the more the people they are trying to hide it from pay attention to it.  This effect becomes even more powerful after the phenomenon that is attempting to be hidden reaches it tipping point. 

Because the American public’s curiosity is already piqued, any mention of the phenomenon, regardless of context, compels the reader to look into it. The principle seems counter intuitive, but SCT critics may have provided a perfect example.  The New York Times and New Yorker articles may actually drive more people toward SCT rather than away. 

One of Basquiat’s trademark graffiti tags was “SAMO,” short for “Same Old.”  It essentially illustrated his disenchantment with the prevailing cultural orthodoxy and his intention to introduce something new, radical and revolutionary as a solution. 

In the same way, SCT is a radical response to the failures of medical orthodoxy. The “SAMO” pills and surgeries that exemplify the “treatment” approach to healthcare have given way to an expanding desire by the American people for procedures that actually “cure” chronic conditions and don’t just mask their symptoms.

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The best approach for the anti-SCT purveyors may be to join a pro-cure movement that is clearly succeeding despite their efforts.  Or, they can continue to publish their criticism.  Either way, stem cell therapy will flourish.

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A. Rahman Ford, PhD, is a lawyer and research professional. He is a graduate of Rutgers University and the Howard University School of Law, where he served as Editor-in-Chief of the Howard Law Journal. He earned his PhD at the University of Pennsylvania.

Rahman lives with chronic inflammation in his digestive tract and is unable to eat solid food. He has received stem cell treatment in China. 

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.

Should Postpartum Pain Control Be a Crap Shoot?

By Lynn Webster, MD, PNN Columnist

Anticipating the birth of my second grandchild should have been a purely joyous time. My daughter was about to become a mother for the second time. The miracle of life would unfold again in our family, as it does for thousands of families, every day, all around the world.

My daughter was scheduled to have a repeat cesarean section (I am sharing this story with her permission). The first operation was uneventful, apart from the fact that it produced my first, adorable grandchild.

However, this time I was concerned that my daughter’s post-op pain might not be adequately treated. Since her first C-section three years ago, the hospital system where she delivers has made a public commitment to reducing the amount of opioids prescribed for acute pain by 40 percent.

I worried that the hospital’s choice to lessen the amount of drugs prescribed, rather than focusing on patients' clinical needs, might mean my daughter's need for pain control would be unmet.

The idea of my daughter enduring inadequately treated pain haunted me, as it would any father, but as a pain specialist, it may have troubled me even more. I have seen the unspeakable suffering that insufficiently managed pain can cause. I also know that inadequately treated acute pain can lead to chronic pain.

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The thought that my daughter might be the victim of the hospital’s well-intended attempt to reduce opioid use was highly unsettling to me, but there was little I could do about it. Doctor or not, I could not be sure that my daughter would receive the individualized treatment she deserved after her surgery.

So, several weeks before her scheduled operation, I advised my daughter to talk to her surgeon. Specifically, I asked her to find out how her post-op pain would be treated.

The irony of the situation was not lost on me. This was the first time in my career as a pain specialist and anesthesiologist that I had to worry a family member might suffer from ineffectually managed post-op pain. It was humbling. I felt as impotent and powerless as any other bystander.

I know the hospital system is addressing the number of people who abuse drugs, and their response may well be appropriate in some cases. But my daughter isn’t contributing to the problem. Why should she have to pay the price for the inappropriate behaviors of others?

Pain control was no longer only a professional concern for me. It was now very personal.

My fear was reinforced by a June 3 The Wall Street Journal article by Sumathi Reddy, “The Push for Fewer Opioids for New Mothers. In it, Reddy describes the national effort to reduce the amount of opioids used postpartum. 

Of course, opioids should not be used if there are safer and more effective alternatives. But some hospitals are taking aggressive steps to eliminate the use of any opioids. As a result, the individual needs of a patient may be lost in an effort to tackle a public health problem.

Something seems out of kilter with that line of thinking. It reminds me of the adage of not seeing the forest for the trees.

The American College of Obstetricians and Gynecologists (ACOG) recently published new guidelines for treating postpartum pain. The guideline does not exclude the use of opioids from post-op pain control. In fact, the recommendation for opioid use seems to be logical and consistent with patient-centered care.

Fortunately, my daughter’s OB is an excellent and caring clinician. Her approach is patient-centered, and she provided my daughter -- cautiously -- with the necessary analgesics to help her manage her recovery. My daughter did not like the way the medication made her feel, but without it she would not have been able to care for her newborn. 

An ACOG recommendation specifically states that postpartum pain management should involve shared decision-making. My daughter needed to understand the risks and benefits of opioids before deciding whether or not to accept them to treat her pain. This approach worked for her. The mother of my new, healthy, precious grandchild deserved no less.

All mothers across the world deserve the same level of care. I fear, in some cases, they may not be as lucky as my daughter. They may not receive the care they need, and the joy of giving birth may be superseded by the agony of unmanaged acute pain.

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Lynn R. Webster, MD, is a vice president of scientific affairs for PRA Health Sciences and consults with the pharmaceutical industry. Lynn is a former president of the American Academy of Pain Medicine, author of the award-winning book “The Painful Truth” and co-producer of the documentary “It Hurts Until You Die.” He lives in Salt Lake City with his wife and now two granddaughters.

You can find him on Twitter: @LynnRWebsterMD.

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.

16 Key Findings about Arachnoiditis

By Forest Tennant, MD, PNN Columnist

We initiated the “Arachnoiditis Research Project” about 6 months ago. Our first goal was to pull together what we have learned to this point. While we continue to gather new information, this short report is an interim attempt to get our findings into the patient and practitioner communities.  

This report is not intended to be a formal protocol or guideline, but a way to pass on what we have found and determined during the course of our learnings.  Please keep in mind that research is neither static nor absolute.  In the future, newer findings will likely both clarify and expand upon our initial findings as presented in this report.    

Frankly, the response to the Arachnoiditis Research Project has been overwhelming. Each day we receive inquiries from patients and practitioners. Patients want help. Practitioners want to know what to do.

We have now reviewed over 300 MRI’s of Adhesive Arachnoiditis (AA) cases. We have received inquiries from 5 continents and over 17 countries. One thing is clear. The need to research and identify treatment for AA is here.  

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The goal of our research is to bring AA treatment to every community worldwide. How? By developing both diagnostic and treatment protocols that can be implemented by any medical practitioner in every community. Here is what we have learned so far:

16 Findings about Adhesive Arachnoiditis  

  1. Treatment efficacy is best achieved by the simultaneous administration of a three component medication program to suppress neuroinflammation, promote neuro-regeneration (nerve regrowth), and provide pain control to function. Medication for these three categories can be competently prescribed by any primary medical practitioner.  

  2. The most common cause of lumbar sacral AA is no longer dural puncture or trauma but intervertebral disc deterioration and spinal stenosis, which has forced cauda equina nerve roots to rub together causing friction, inflammation and adhesion formation.  

  3. Although there is no single symptom that uniquely identifies AA, there are a few symptoms that the majority of AA patients will usually have.  A simple 7-question screening questionnaire has been developed to help in identifying potential AA. If a patient answers “yes” to at least four of the seven questions in the test, they should immediately be evaluated by a physician to confirm the diagnosis.  

  4. A contrast MRI or high-resolution TESLA-3 or higher MRI can be used to visualize the cauda equina nerve roots and show abnormal swelling, displacement, clumping, and adhesions between clumps and the arachnoid layer of the spinal canal covering.  A greater number and larger size of clumps is generally associated with the most severe pain and neurologic impairments.  

  5. Some MRI’s are inconclusive or equivocal even though typical symptoms may be present.  In these cases, therapeutic trials of anti-neuroinflammatory drugs and pain control are warranted.  

  6. Spinal fluid flow impairment is common in AA patients and appears to be a cause of headache, blurred vision, nausea, and dizziness.  Obstruction or back-up of fluid can often be seen on an MRI.   

  7. Spinal fluid “seepage” throughout the damaged arachnoid layer and wall of the lumbar sacral spine covering is common and can be a cause of pain, tissue destruction and severe contraction that causes restriction of extension of arms and legs.  A physical sign of chronic seepage is indentation of tissues around the lumbar spine.  

  8. Pain due to AA appears to be a combination of two types: inflammatory and neuropathic (nerve damage).  It may also be centralized with what is called “descending” pain.  Proper pain control may require medicinal agents for all types.  

  9. There is currently no reliable laboratory test for the presence of active neuroinflammation, although certain markers (by-products of inflammation) such as C-Reactive Protein and myeloperoxidase may sometimes show in the blood.  Neuroinflammation may go into remission, but it may also act silently to cause progressive nerve root destruction.  

  10. Basic science and animal studies show the neuro-steroids (hormones made inside the spinal cord) have the basic functions of neuroinflammation suppression and neuro-regeneration stimulation.  Our observations clearly indicate that the patients who have improved the most have taken one or more of the hormones reported to reduce neuroinflammation and promote and support neuro-regeneration.  

  11. Patients who have had AA for longer than 5 years must rely on aggressive pain control to function and achieve recovery.  After a long period of untreated neuroinflammation, scarring of nerve roots is too severe for much regeneration to occur.  

  12. The drugs and hormones required for suppression of neuroinflammation and promotion of neuro-regeneration do not need to be taken daily to be effective and prevent side effects.  Medical practitioners have a choice of agents, and they can be competently prescribed by primary care practitioners.  We have found that three times a week dosing is usually quite sufficient.

  13. Persons who have developed AA without warning, trauma or chronic disc disease have often been found to have a genetic connective tissue disorder of which the most common are Ehlers-Danlos syndromes.  

  14. Cervical neck arachnoiditis is primarily a clinical and presumed diagnosis as there are no nerve roots to clump and observe on MRI.  The key MRI finding is spinal fluid flow obstruction and the major clinical symptom is extreme pain on neck flexing.  

  15. Only ketorolac among the anti-inflammatories, and methylprednisolone among the corticoids are routinely effective in AA.  Other anti-inflammatories and corticoids either do not cross the blood brain barrier or therapeutically attach to glial cell receptors.  

  16. Some seemingly unrelated compounds found to suppress microglial inflammation in animal and invitro studies also appear to have therapeutic benefit as neuroinflammatory suppressors in AA patients.  These include pentoxifylline, acetazolamide, minocycline and metformin.

The Tennant Foundation has also released an enhanced protocol for primary care physicians who treat AA patients. You can find the protocols and research reports on our website.

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

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.

Crackdown on Opioids and Benzodiazepines Ignores Their Benefits

By Roger Chriss, PNN Columnist

The overdose crisis is driving a lot of panicky policy to more closely regulate the prescribing of scheduled drugs, from oxycodone and other opioids to clonazepam and other benzodiazepines, which are used to treat anxiety.

A California doctor was recently accused of unprofessional conduct and could lose her license for prescribing “excessive amounts of opioid medications and benzodiazepines.” And a New Jersey doctor faces criminal charges for prescribing the so-called “Holy Trinity” of opioids, benzodiazepines and muscle relaxers.

The crackdown on opioids and benzodiazepines may help reduce overdose fatalities, but it also risks depriving people of beneficial drugs. Research is finding new benefits for familiar drugs that may slow diseases and improve quality of life.

In a recent Phase III clinical trial, a “novel” combination drug was shown to ease Charcot-Marie-Tooth disease. The drug – called PXT3003 -- provided “meaningful improvement” for people with a hereditary neuropathy that results in a progressive loss of sensation and motor function.

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This is a significant advance for people with Charcot-Marie-Tooth disease, which currently has no treatment. The FDA recently gave PXT3003 its “fast track” designation, which speeds the development of drugs for which there is an unmet medical need.

PXT3003 is a combination of three familiar drugs, naltrexone (an opioid receptor blocker), baclofen (a muscle relaxant), and sorbitol (an alcohol sugar). The how and why of this combination of drugs is not well-understood at present. The manufacturer Pharnext says there are “multiple main mechanisms of action” that improve nerve, muscle and immune cells.

In other words, research on existing drugs with known risk profiles has led to a novel treatment. Ordinarily, the use of an opioid and a muscle relaxant is regarded as clinically inadvisable and is actively counseled against in many prescribing guidelines.

Benzodiazepine Research

A similar outcome is occurring with long-term benzodiazepine therapy in congestive heart failure (CHF). An editorial in Psychotherapy and Psychosomatics reported that low-to-moderate doses of benzodiazepines “seem to be helpful in silent myocardial ischemia, angina, essential hypertension, and CHF, especially in patients with comorbid anxiety.”

This builds on research from Taiwan in 2014 showing that anti-anxiety medications are “associated with a decreased risk of cardiac mortality and heart failure hospitalization in patients after a new myocardial infarction.”

Long-term benzodiazepine therapy is already seen as important in the treatment of rapid eye movement sleep behavior disorder, a condition in which causes people to act out vivid and violent dreams, often injuring themselves or bed partners. Low-dose clonazepam therapy for months or even years turns out to be a highly effective treatment.

In the same fashion, benzodiazepines are used to treat stiff-person syndrome, a rare neurological disorder that causes extreme muscle rigidly and spasms that can make walking impossible. According to the National Institutes of Health, therapy to treat stiff-person syndrome includes “anti-anxiety drugs, muscle relaxants, anti-convulsants, and pain relievers.”

‘Political Interference’ in Medicine

But treatments for these disorders and the development of new regimens for other disorders may be impeded under current federal and state laws and guidelines. Recently a coalition of six physician groups called on state legislatures to end their “political interference” in the practice of medicine and the patient-physician relationship.

“The insertion of politics between patients and their physicians undermines the foundation of trust this relationship is built on and inhibits the delivery of safe, timely, and comprehensive care. Outside interference endangers our patients’ health by limiting, and sometimes altogether eliminating, access to medically accurate information and to the full range of health care,” the coaltion warned.

Physicians should never face imprisonment or other penalties for providing necessary care. These laws force physicians to decide between their patients and facing criminal proceedings.
— Coalition of physician groups

“Physicians should never face imprisonment or other penalties for providing necessary care. These laws force physicians to decide between their patients and facing criminal proceedings. Physicians must be able to practice medicine that is informed by their years of medical education, training, experience, and the available evidence, freely and without threat of criminal punishment.”

The statement was released by the American Academy of Family Physicians, American Academy of Pediatrics, American College of Physicians, American Congress of Obstetricians and Gynecologists, American Osteopathic Association and American Psychiatric Association.

As the past couple of years have shown, prescribing guidelines have a way of leading to blanket prohibitions. And a risk of blanket prohibitions is that we may miss important benefits.

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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.

Beautifully Catastrophic

By Mia Maysack, PNN Columnist

Whatever I do, there is going to be detrimental repercussions to my health and I do it anyway. Because if I didn't, I may as well be dead. At least in the sense of the quality of life I'd be lacking.

I have a love for creative expression through dance. As a young girl swimming and diving were my passions, but after a freak accident in the water gave me bacterial meningitis and chronic migraine, I found another passion in the form of dancing.

Over the years, my ability to dance had lessened and getting a nerve disorder diagnosis was another wake-up call. But who's to know what the future holds. It’s wise to make good use of this gift while still able.

I am lucky to get a few solid moments of dancing and when I get to the point of breaking a sweat, heightened pain is just about guaranteed as a result.

What's a person to do, if they can’t do what they love? For me, the answer has been to pursue it at a lighter extent, a handful of times per month as opposed to every day as it was in the past.   

My movement has evolved into a demonstration of my ailments --- to acknowledge and release them, while providing outside space for them to breathe. We all have unique traits and possess individualized talents that I believe were given to us as gifts to provide back to the world. 

I submitted this creative dance video to the 4th Annual Migraine Moment Short Film contest. It’s dedicated to those mourning the loss of who they were or wanted to be before becoming a Pain Warrior.

Prior to the making of this video, there was a solid month of resilience training. After recording it, I crawled into bed and rocked myself in response to the excruciating pain induced by dancing.  

The pain was horrendous and lasted for days, but I felt gratitude to have had even just a few moments to do something that brings me joy. I worked hard for that extra Spoon to be able to continue on through discomfort. It’s empowering to reclaim a part of myself in the midst of what can feel like broken pieces.   

A lot of us have had to give up things we've enjoyed. That’s another realm of grief that ordinarily doesn't make it to the surface, because we're fixated on just getting by one moment at a time. That alone takes much of our energy. 

It's imperative that we not allow our ailments or conditions to become our identity. I no longer look at it as if I “make myself sick” by engaging in this release. I already am sick. And that's not my fault either.   

I've found when I take conscious time to engage in meaningful activities that aren't revolved around being sick that there’s an impactful sense of replenishment. 

Some of us have been dealing with our battles for longer than we even want to think about or have situations that are expected to be incurable or life-long. What if we shifted our focus on what we can do right now? 

A lot of odds may be stacked up against us but we need not underestimate the power within an adequate self-care approach and routine. Although we've fallen down 7 times, we must rise up 8 -- and as many more times it takes.

It's important to mourn our losses so we may then find the strength to move on from them. It provides the opportunity to re-invent ourselves, which in my experience has been necessary more times than I'm able to count.  

I've referred to my chronic conditions as a thief. These illnesses have taken away jobs, social engagements and the concept of commitment. It's devastating to pick up the broken pieces of a shattered life, especially when it happens repeatedly.  

Alas, the good news is that our mindset is entirely within our power. What can be done with this pain, how will it be productively used?

There will always be those that’ll suggest I shouldn’t ever wear headphones, blast loud music or engage in any sudden movements. But I’ll never give it up!!

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Mia Maysack lives with chronic migraine, cluster headaches and fibromyalgia. Mia is the founder of Keepin’ Our Heads Up, a Facebook support group, and Peace & Love Enterprises, a wellness coaching practice focused on holistic health.

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 Pain Poem: What I Wouldn't Do

“What I Wouldn’t Do”

By Serina Mikunda

What would I do just to feel okay?
To feel less pain, for only a day?
I would hope and wish and pray
But what would I not do?

We would do most anything to quell desperation
To feel like more than an aberration
To achieve more than adaptation
But our laser tight focus can lead us askew

Would you take meds from a loved one's drawer?
Cause suffering to someone you say you adore?
Turn into someone you would abhor?
Changing from the person you once knew?

Would you use heroin you got off the street?
Would you lie, or would you cheat?
Dig in deeper to a life of deceit?
Justifying that relief was long overdue?

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I know you are feeling a lot of abandonment
Not getting much help from the medical establishment
I offer only my view, no judgement
I know you are doing the best you can do

I know what is asked of you is crazy
I know people think that you're just lazy
And your ability to see beauty is getting hazy
These urges are getting hard to subdue

Think long-term, join us in the fight
Help us shoot sparks until something ignites
We will all warm ourselves by the firelight
Warming others by the light of our virtue

Because we have all walked through the fire
And we know all too well the situation is dire
But you have the chance to lead, to inspire
Whether it happens is all up to you

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Serina Mikunda is an author and activist in St. Louis, Missouri. Serina lives with Ehlers-Danlos syndrome.

Pain News Network invites other readers to share their stories (and poems). 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.

Emmy Winning Video Perpetuates Myths About Addiction

By Dr. Lynn Webster, PNN Columnist

"Rebekkah's Story" recently won an Emmy for Short Format Daytime Program at the 46th Annual Daytime Emmy Awards. The six-and-a-half minute video was produced by Truth Initiative, a non-profit created to campaign against tobacco use that recently launched an opioid misuse and education campaign called The Truth About Opioids.

Rebekkah is a young woman addicted to opioid medication and heroin who spent five days in a “treatment box” publicly detoxing on a New York City street.  The documentary has also been broadcast on television and can be seen online:  

Though billed as educational, the producers of “Rebekkah’s Story” failed to accurately convey the facts. This is not the first time we've seen movies about drug use and addiction that misinform.  

I wrote a blog not long ago about the problems with two mainstream movies -- "Ben Is Black" and "Beautiful Boy"— both of which reinforced unhelpful narratives about addiction. In both films, good people from good families found themselves caught in the web of addiction, seemingly with no personal responsibility for it. 

"Rebekkah's Story" continues in the same tradition. It exploits Rebekkah and her experience while perpetuating three myths about addiction that do us no favors as our nation struggles with this terrible illness.

At the same time, millions of Americans with chronic pain are being forced off opioid medication — left to suffer in part because of these three myths:

Myth #1: Heroin Use Starts With Prescription Drugs

The movie begins with a misleading statistic: “Eighty percent of heroin users started with a prescription painkiller.” That implies taking painkillers as prescribed for medical use leads to using heroin 80% of the time, and that is not accurate. 

The 80% statistic comes from a 2013 study of heroin users who reported nonmedical use of opioid pain relievers before initiating heroin. Most of them had not been prescribed those opioids for pain; they obtained the drugs from family or friends for nonmedical use.  

In fact, the vast majority of people who use heroin have abused other substances prior to abusing prescription opioids. Usually, their long history of substance abuse begins in adolescence with tobacco, alcohol and other substances besides opioids. Moreover, by 2015, one in three heroin users initiated their opioid use with heroin.

Rebekkah's situation -- progressing from oxycodone to heroin -- was unusual. The video presents her story as a cautionary tale of what can happen if you use prescription opioids, but her story is atypical. Almost always, there are other factors that contribute to the transition from appropriate use to abuse and addiction. This is a truth not addressed in the film. 

The film begs the question: Why did Rebekkah start to use heroin? What did heroin provide that she could not resist? 

Myth #2: Withdrawal Is Synonymous to Addiction

"She had been an accomplished dancer and athlete, and that was lost when her addiction took over her life and self-image," explains the video's website. "Now Rebekkah is regaining control of both — courageously making her detox public in order to help other people while she works towards a new start."

The producers of “Rebekkah’s Story” present a poignant story, but they propose that withdrawal is synonymous with addiction. That is incorrect.

Withdrawal may be associated with addiction, but it does not necessarily follow from addiction. Not everyone who goes through withdrawal has the disease of addiction, and not everyone with addiction must go through the agonizing withdrawal that Rebekkah did.

A major problem that most people with addiction face is the stigma associated with their disease and their inability or unwillingness to obtain help. Fear of facing a legal penalty (such as incarceration) or a social consequence (estrangement from family members, job loss, etc.) often prevent those who use heroin from seeking treatment.  

People experience opioid withdrawal largely because the healthcare and criminal justice systems make access to appropriate and safe treatment illegal, unavailable or unaffordable.  

Myth #3: Detoxification Ends Addiction 

The ending of "Rebekkah's Story" differs from reality, too. Addiction is usually a life-long disease and patients who recover frequently relapse. The video's tidy and triumphant resolution does not accurately reflect what occurs in real life.  

It's troubling how the producers went about creating the video in ways that subtly strengthen and exploit the three myths about addiction.

Their set was a makeshift hospital room projected in a cubicle visible to pedestrians walking near Times Square. The setting was essentially a stage for performance art at Rebekkah's expense.

Rebekkah takes on the role of a gladiator engaging in combat against a metaphorical beast: the agony of opioid addiction.

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She is the heroine with whom we should empathize. We are supposed to share her anger toward the wicked doctors who prescribed her pain medication. 

People watch as Rebekkah suffers from withdrawal without receiving the medical treatment that should be available to anyone in withdrawal. It was surprising that, in the documentary, an addiction physician was complicit in exploiting a person undergoing withdrawal.   

No one should be forced to experience what Rebekkah went through. She should have been given appropriate medical care as she recovered from heroin abuse. 

"Rebekkah's Story" claims to tell the truth about opioids. It does not. All it shows is Rebekkah’s decision to voluntarily and publicly experience a horrible withdrawal that was both unnecessary and avoidable.

Unfortunately, compliant and non-addicted pain patients who are currently being forced off opioid medication don’t have the same stage to tell their stories. Their voices often go unheard, and their agonies are invisible.

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Lynn R. Webster, MD, is a vice president of scientific affairs for PRA Health Sciences and consults with the pharmaceutical industry. He is a former president of the American Academy of Pain Medicine and is author of the award-winning book “The Painful Truth” and co-producer of the documentary “It Hurts Until You Die.”

You can find him on Twitter: @LynnRWebsterMD.

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: Who Benefits From the Opioid Crisis?

By Carol Levy, PNN Columnist

For the first time in almost 40 years, I have to fight to get my codeine prescription filled.

I understand intellectually what so many pain patients have said about the frustration, upset and upheaval they experience when a pharmacist refuses to fill their prescription or insurance refuses to pay for it. Or harder still, what they go through having their opioid medications cut down or stopped completely.

But I did not understand the emotional side of it until it happened to me.

The insurance company refused to pay for my codeine prescription. They had no problem filling it for the last many, many years but suddenly they need "authorization" from the doctor. How does that make sense? Writing the prescription was authorizing. Why do they need to add a second permission?

It is now over three weeks. The pharmacist tells me they have contacted the doctor's office three times: "You need to call them and find out why they haven't responded."

When I call the office, they tell me the pharmacy never sent over the forms they need.

So I call the pharmacy back. They recite a fax number for the doctor’s office. It is not the right number. I give them the number the doctor's office just gave me. “We'll try it again right now,” she says.

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I keep my fingers crossed and hope I don't run out of pills before it is resolved — if it is resolved.

The pharmacy clerk and I talked the day the prescription was refused by the insurance company. I was venting my frustration over not being able to get the prescription filled, especially because it is the same prescription I have had for years, one that was always covered by my insurance.

To my surprise she says: "It is not just narcotics. Many insurance companies are refusing to cover or making unwarranted demands, requiring many more hoops to jump through. They have refused to cover certain creams and hormones, other prescriptions, non-narcotics that are routinely given and, until now, paid for by the insurance companies."

This is appalling. And makes no sense.  

But then I start thinking about it and was struck by a thought: Yes, there is an opioid crisis. And we’ve all heard the reasons they blamed patients for the “crisis.”  But I think there may be another factor at play: the profit margin.

After all, if we pay insurance premiums but they refuse to pay for our medication -- forcing some folks to pay cash rather than wait for all the rigamarole to be completed -- then the insurance company comes out way ahead. They get our monthly fees and work to make sure we get as little as possible in return. 

I hope I am merely being paranoid. But somehow, I doubt it.

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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.