Living With an Invisible Monster

By Marcie Ann Dillard, Guest Columnist

I live with an invisible monster that consumes both body and mind. A monster that steals the ability of children, mothers, fathers and grandparents to sit, stand or walk. A monster that consumes finances, destroys friendships, marriages and families.

I say invisible monster because when I speak these three letters -- RSD --- which stand for Reflex Sympathetic Dystrophy, I am faced with the blank stares of the ignorant.

What is such a thing I myself in 47 years of living had never heard of? How could I have not known of this monster that stalks me like a crouching lioness after a simple leg fracture?

She pounced suddenly and fiercely, feeling her teeth, her bite sink into my body, setting my flesh on fire in moments. Now in the grasp of a beast that respects no one, she sinks her claws deeper. Her death grip no one will ever escape.

Going from doctor to doctor, I can feel her but she goes unseen even after dozens of MRIs, CT scans and x-rays. The searing unseen pain forces me to look for freedom from what I now understand to be the most painful disease known to man.

I begged for those sworn to help me to release me from her grasp, but ignorance -- mine and theirs -- gave her time to continue her devastation.

I marched through this life boldly; a mother, wife and business owner, never giving a thought to the day that would end. Then that day came. The only evidence often of her existence was the life stealing pain, and the integrity of my words lost among strangers.

The skeptical looks of the medical community as I once again describe the effect her grasp has on my body.

Through the tears of pain and hopelessness, the joy of living is veiled in agony. The blank stares of loved ones when I choose to be honest about what I daily experience. Self-confidence fades, the beat of the drum I confidently marched to become unclear, self-worth gone, as one by one the things that made me Marcie Ann become painfully impossible feats.

She never stops chewing my flesh, the nerve twitches and the muscle spasms a constant reminder that I remain helpless prey to a ruthless predator.

If I spoke these six letters -- CANCER -- I would be met with the sympathy of the community. Not to offend those who suffer from that monster or have suffered a loss to it, but perhaps someone would run a marathon in my honor or host a fundraiser to help me secure lifesaving treatment.

If I said it was a terminal illness there would be no misunderstanding of the impending outcome. But with chronic, progressive and incurable pain, the well of sympathy quickly dries.

Silent suffering.

In this lifetime, the lioness will never deliver her final blow and end my suffering .

Marcie Ann Dillard lives in Washington state. She was diagnosed with Reflex Sympathetic Dystrophy in 2012, two years after her symptoms began.

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.

Vitamin D Levels May Help Predict Risk of MS

By Pat Anson, Editor

Vitamin D levels in the blood may help predict whether a person is at risk of developing multiple sclerosis, according to a large new study published online in the journal Neurology.

The findings provide the best evidence to date that low levels of Vitamin D may be a contributing factor to multiple sclerosis (MS), a chronic and incurable disease which attacks the central nervous system.

“There have only been a few small studies suggesting that levels of vitamin D in the blood can predict risk,” said study author Kassandra Munger, ScD, of the Harvard T.H. Chan School of Public Health in Boston. “Our study, involving a large number of women, suggests that correcting vitamin D deficiency in young and middle-age women may reduce their future risk of MS.”

Munger and her colleagues analyzed a database derived from blood samples taken during prenatal testing of over 800,000 Finnish women. Using hospital and prescription records, they were able to identify 1,092 of those women who were later diagnosed with MS. They were compared to a control group of 2,123 women who did not develop the disease.

Of the women who developed MS, 58% had deficient blood levels of vitamin D, compared to 52% of the women who did not develop the disease.

Deficient blood levels of vitamin D were defined as fewer than 30 nanomoles per liter (nmol/L). Insufficient levels were 30 to 49 nmol/L and adequate levels were 50 nmol/L or higher.

Researchers found that with each 50 nmol/L increase in vitamin D in the blood, the risk of developing MS later in life decreased by 39 percent. In addition, women who had deficient levels had a 43% higher risk of developing MS than women who had adequate levels.

“More research is needed on the optimal dose of vitamin D for reducing risk of MS,” said Munger. “But striving to achieve vitamin D sufficiency over the course of a person’s life will likely have multiple health benefits.

"Our results further support and extend those of previous prospective studies of (Vitamin D) levels in
young adults and risk of MS, and suggests that many individuals are exposed to an increased MS risk that
could be reduced by broad population-based programs to prevent vitamin D deficiency."

Participants in the study were primarily white women, so the findings may not be the same for other racial groups or men. Also, while the blood samples were taken an average of nine years before MS diagnosis, it is possible some women may have already had MS when their blood was drawn and were not yet showing symptoms of the disease.

MS causes numbness in the limbs, difficulty walking, paralysis, loss of vision, fatigue and pain. Symptoms begin with a series of irregular relapses, and after about 20 years MS worsens into a secondary progressive stage of the disease.

Low blood levels of vitamin D – known as the “sunshine vitamin”-- have previously been linked to an increased risk of developing MS. Danish researchers found that MS patients who spent time in the sun every day during the summer as teenagers developed the disease later in life than those who spent their summers indoors.

Ultraviolet rays in sunlight are a principal source of Vitamin D, which has a wide range of positive health effects, such as strengthening bones and inhibiting the growth of some cancers.

Pam Bondi to Join Trump Opioid Commission

By Pat Anson, Editor

Less than three weeks before its final report is due, President Trump’s opioid commission is getting a new member --   Florida Attorney General Pam Bondi.

Bondi is a longtime supporter of the president, served as a member of his transition team, and was once rumored to be the next head of the White House Office of National Drug Control Policy. There was speculation back in March that Bondi would be named to the opioid commission, but it was not until last week that the White House confirmed it was President Trump's "intent to appoint" Bondi to the panel, which currently has five members.

Curiously, Bondi’s office blamed New Jersey Gov. Chris Christie, the chair of the opioid commission, for the six month delay in getting her on board. Both Bondi and Christie are lame ducks serving out their final months in elected office.

“The President always intended for the Attorney General to be on the Commission – however, Governor Christie choose (sic) to begin the Commission with only himself and four others,” Whitney Ray, Bondi’s spokesman, said in an email.

“The announcement (of Bondi's appointment) is protocol before the Executive Order is signed next week. The Attorney General will continue to work with President Trump, General Kelly, Kellyanne Conway and other leaders to combat the national opioid epidemic.“

Bondi's spokesman also reportedly said that the October 1 deadline for the commission to release its final report would be extended. No such announcement has been made and the White House website still doesn’t list Bondi as a commission member.

FLORIDA ATTORNEY GENERAL PAM BONDI

The Trump administration has also yet to issue an official declaration that the opioid crisis is a national emergency – something the President said he would do over a month ago.  

"The opioid crisis is an emergency, and I am saying, officially right now, it is an emergency. It's a national emergency. We're going to spend a lot of time, a lot of effort and a lot of money on the opioid crisis,” Trump said on August 10.

Bondi played a prominent in shutting down Florida’s pill mills several years ago, but critics say she has been slow to acknowledge that the opioid crisis has shifted away from prescription painkillers to heroin and illicit fentanyl.

“The problem is Bondi isn't doing enough about the heroin epidemic,” the Miami Sun Sentinel said in an editorial.  “Considering that Bondi was once touted as a potential Trump drug czar — and infamously failed to investigate Trump University after receiving a major donation from Trump — it's no surprise that she was named to the commission. But she's still living off her reputation from the pill mill crack down.

“In fact, if you Google Bondi and heroin, by far the most you'll read about is when she slammed a drug dealer for stamping Trump's name on a batch of heroin. You won't find any solutions to our crisis.”

In a recent interview with WMBB-TV, Bondi warned that drug dealers were putting heroin and illicit fentanyl into counterfeit medications.

"It's a national epidemic and it truly affects everyone, and parents need to really warn their kids, their teens, adults need to know, never take a pill from someone you don't know, even if they say it is a Tylenol, an Advil or an aspirin. Don't take anything from someone who you don't know," said Bondi.

The initial focus of Trump's opioid commission has been on educating, preventing and treating opioid addiction. An interim report released by the commission in July recommends increased access to addiction treatment, mandatory education for prescribers on the risks and benefits of opioids, and increased efforts to detect and stop the flow of illicit fentanyl into the country.

There are no specific recommendations aimed at reducing access to prescription opioids, although they could be added to the commission’s final report.

In addition to Gov. Christie, commission members include Gov. Charlie Baker of Massachusetts, Gov. Roy Cooper of North Carolina, Bertha Madras, PhD, a professor of psychobiology at Harvard Medical School, and Patrick Kennedy, a former Rhode Island congressman. No pain patients, pain management experts or practicing physicians were appointed to the panel.

Learning How to Live with Chronic Pain

By Barby Ingle, Columnist

When I became so debilitated by chronic pain and doctors could not figure out what was going on, I could no longer hold my life together. It was a minor auto accident that triggered crazy symptoms that didn’t make sense to me or my doctors.

When the first symptoms of Reflex Sympathetic Dystrophy (RSD) began, I thought I was being ridiculous. The pain was overwhelming. It took all of my attention and energy just to be able to focus. It felt a burning fire in my face, neck and shoulder, and my skin became discolored. I also started having balance issues and falling.

I remember at a practice I was working with a male cheerleader and we did a stunt. Everyone around us was yelling, “Coach, stand up straight. What are you doing?”

I kept saying I was straight, but then I looked down. I didn’t even know how he was holding me up in the air. I was in the weirdest position; legs bent, leaning forward, arms not in the right place. Until I saw what my body was doing I had no idea what everyone was so upset about. 

I was coaching, heading to counseling appointments, chiropractors and neurologists, and sleeping in my office or wherever I could find a place to sleep. It wasn’t solid sleep. It was for 20 to 45 minutes at a time. I was overwhelmed physically and emotionally, not being able to coach like I wanted, but still trying not to let my team members down.

I wish I could go back and help them understand what I was going through. I wish I had let go of my job sooner so that they could have had a better year. I didn’t know that what I was dealing with was not going to be as easily overcome as endometriosis was. That was a struggle that made me believe everything was just a challenge that I could get past. Not this time. It was going to take years, financial strain, and learning new life skills. I just didn’t know it. 

I was no longer able to handle my dream job of coaching cheer and dance at a Division I-A university. My business started to crumble and eventually closed. My husband stopped supporting me emotionally and physically. I didn’t have the energy to take care of me and him any longer. One good thing that came from it was that after our separation he found God, and was baptized into the Catholic Church the next Easter.

The biggest reason our marriage fell apart was he had me feeling that it was all in my head, and tried to convince my family and our friends of the same. My psychologist and psychiatrist both told me he was wrong. What I had was situational depression and they assured me what I was going through was normal. They had faith in me and helped me get faith back in myself. 

We began marriage counseling before the accident because of our struggling relationship, but that was no longer an issue because the relationship was over. We were divorced within 3 months of filing for separation. Now I needed help getting my new life in order and to continue counseling, until I felt I had the life tools I needed to be the best me I could be.  

I rated the physical pain I had from the accident in the beginning as a level ten. I did not think I could take anything worse. But as each surgery or procedure was performed and the pain only worsened, I wanted sometimes to have that first pain back.

As our bodies get “used to the pain,” it sometimes gets easier to manage and deal with. With each additional trauma and spread of RSD, the pain I thought was unbearable becomes a livable level. But I wasn’t living.

“Reflex” is any process in your body that automatically goes haywire. “Sympathetic” is your sympathetic nervous system, which makes you feel like you are on fire and you can’t put it out. “Dystrophy” is the loss of muscle and bone, which left me in a wheelchair for many years.

As an athlete, it was difficult to understand how working out and pushing myself were making me worse, but it was. Pushing myself too far taught me that it can cause damage. I realized that doing this was creating further damage to my body and pain pathways. I learned that trying smarter is more important than trying harder.

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.

Do Half of Americans Really ‘Misuse’ Drugs?

By Pat Anson, Editor

One of the nation’s largest drug testing companies has released a study claiming that over half of Americans who are prescribed medication show signs of drug misuse, including potentially dangerous drug combinations.

In 2016, Quest Diagnostics found that 52% of patient test results were “inconsistent” with their prescribed medications. That was an improvement over the rate found in 2011, when 63% of samples were inconsistent.

The Quest report, titled "Prescription Drug Misuse in America: Diagnostic Insights in the Growing Drug Epidemic," is based on an analysis of 3.4 million laboratory tests performed between 2011 and 2016.

Many of the specimen samples came from patients being treated in pain management and addiction treatment clinics, which are not representative of the population as a whole.

Like previous studies of its kind, Quest broadly defines what constitutes drug “misuse” – a misleading term many people associate with abuse, addiction and diversion. Nearly a quarter of the patients (23%) with inconsistent results had no drugs detected in their system, which simply means they were not taking medications as directed.

The other 77% tested positive for illegal drugs or for a medication they were not prescribed.

"Over the past several years, federal and state government, clinician organizations, public health advocates and providers have all launched campaigns to educate the public about the perils of prescription drug misuse, which hypothetically should have yielded a significant rate of improvement. Yet our study shows that every other American tested for possible inappropriate use of opioids and other prescription drugs is potentially at risk," said F. Leland McClure, PhD, director of medical affairs at Quest Diagnostics.

"This finding is rather shocking, and speaks to the challenges of combating the nation's drug misuse epidemic."

Are the results really all that shocking? Or were they ginned up to hype the so-called epidemic? Consider some of the reasons a patient may not take a drug or have an inconsistent test result:

• Patient didn't like side effects from a medication
• Pain or other symptoms have subsided, so medication is not needed
• Patient skipped a dose
• Patient cannot afford a medication
• Patient can’t find a pharmacy willing to fill their prescription
• Patient may be a “rapid metabolizer” of a medication
• Physician may not be aware another doctor prescribed a drug
• Inaccurate drug test

The latter is a very real problem in the drug testing industry. As PNN has reported, “point-of-care” urine tests widely used by pain management and addiction treatment doctors to screen patients for illicit drug use are wrong about half the time, often giving false positive or false negative results for drugs like marijuana, oxycodone and methadone. 

The Quest study identified some disturbing and encouraging trends in drug use.

It wasn't opioids but benzodiazepines – a class of anti-anxiety medication that includes Xanax – that were most likely to be misused by adults over the age of 25.  Marijuana was most likely to be misused by people aged 18 to 24.   Opioids were second in both age groups.

Quest researchers found a striking decline in drug misuse among adolescents 10 to 17 years of age. The inconsistency rate for adolescents dropped from a whopping 70% in 2011 to 29% in 2016. Amphetamines and attention deficit disorder drugs were most likely to be abused by adolescents.

Among nearly 34,000 patient samples tested for opioids, alcohol and benzodiazepines, more than 20% were positive for opioids and benzodiazepines, 10% were positive for alcohol and opioids, and 3% were positive for all three.  Any combination of these drugs raises the risk of respiratory depression and overdose.

Misuse rates were higher for men and women of reproductive age (58%) than in the general study population (52%). The findings are significant because opioid and benzodiazepine use may decrease male fertility and, if taken during pregnancy, increase the risk of birth defects and other health concerns.

Quest is one of several drug testing laboratories that have been fined millions of dollars for paying kickbacks to physicians and patients for medically unnecessary tests.  Recent guidelines adopted by the American Society of Addiction Medicine warn doctors about ordering expensive drug tests that have led to “unethical and/or fraudulent activities.”

A Pained Life: The “I Dunno” Answer

By Carol Levy, Columnist.

“I dunno.”

That phrase feels like the bain of my existence. Most of us have heard it.

My brain stimulator implant is experimental.  I was told I'm just the 13th person in the world to get it. It was in for over 20 years, but recently stopped working. Until it failed, I had not been aware just how much benefit the stimulator had given me. I was still unable to work -- the eye pain from my trigeminal neuralgia is too bad -- but I was able to do a lot more things before the pain became unbearable. Once the stimulator failed, I was back to where I was originally,

I asked my neurosurgeon “Why did it fail?”

He shrugged his shoulders. “I dunno.”

As it failed, I was getting some horrific “tic-like” pains. My pain doc ascribed them to anaesthesia dolorosa (phantom pain). They were very different in intensity and sensation from the usual pain. They were odd spontaneous sensations, usually an intense itch in a small area under my nose (an area that was not a part of my trigeminal neuralgia).

Neither my neurosurgeon nor my pain doc could explain why this was happening. My feeling was that maybe the sensory cortex, where the implant was placed, might be remembering the stimulation and causing the pain.

When I asked, they gave the same answer. "I dunno.”

I searched the internet for a sensory cortex specialist. I found one and sent off an email. “Does the sensory cortex remember?” I asked, explaining about the implant, where it was, what it was supposed to, and the weirdness of the pain.

He was very kind and replied almost immediately. “I dunno.”

The “'opioid epidemic” has harmed many people in the chronic pain community, who either no longer have access to opioid medication or the amount that had been helping. I talk to these people and read what they write in support groups.  

“My doctor reduced the amount of opioids I was on,” they say. Now they can’t work, clean their homes, take care of their children, or go on disability. Others say their doctor now refuses to write any more prescriptions for a medication they were taking for years.  

Invariably, the end of the conversation with the doctor is pretty consistent. “What am I supposed to do now?”

“I dunno.”

Often we ask our physicians why we have the disorders we have, what are the standard treatments, and if they might help us. Too often we get the “I dunno” answer.

I am not sure what it is about pain vs. so many other health conditions, but “I dunno” seems to be the answer too many times for too many of our questions.

As long as pain is a distant cousin to cancer, diabetes and other “major” health problems, we will be the proverbial 4th cousin twice removed. The medical community and government will be happy to just pat us on the head, say “I dunno” and hope we disappear.

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.

Researchers Question Value of Brain Imaging

By Pat Anson, Editor

An international team of researchers is recommending against the use of brain imaging as a diagnostic test for chronic pain, saying the tests are “inappropriate and unethical.”

"It's not possible at this point in time to say with any degree of certainty that a person does or does not have chronic pain based on brain imaging," said Karen Davis, PhD, senior scientist at the Krembil Research Institute and a professor at the University of Toronto.

"The only way to truly know if someone is in pain is if they tell you because pain is subjective and it is a complex experience. No brain scan can do that."

In recent years, technological advances in brain imaging have led to an increased use of functional magnetic resonance imaging (fMRI) to search for brain-based biomarkers for chronic pain.

Demand for brain imaging is also growing for legal purposes, including the development of a potential “lie detector” test for chronic pain.

"Use of such tools would be inappropriate and unethical," said Davis. "This technology is not foolproof. There are vast issues of variability between people and even within a person at different times. As a result, brain imaging must not be used as a lie detector for chronic pain."

Davis and her colleagues say brain-based biomarkers should only be used to supplement -- not replace -- a patient’s own reports of pain, even if testing is improved and valid protocols developed. Their recommendations were published in the journal Nature Review: Neurology.

"We are working towards biomarkers for chronic pain, but the goal is not as a lie detector test but rather to help provide personalized pain treatment options for patients," Davis. “People outside of the field of imaging might be disappointed, but the fact of the matter is the technology cannot be used to support or dispute a claim of chronic pain."

According to a 2015 study at the University of Michigan, one in eight visits to a doctor for a headache or migraine end up with the patient going for a brain scan. Often a doctor will order an fMRI to ease a patient’s fear that they may have a brain tumor or some other serious health problem. Doctors may also order a test to protect themselves in case of a lawsuit. About 1 to 3 percent of brain scans of patients with repeated headaches identify a cancerous growth or aneurysm.

University of Michigan researcher Brian Callaghan, MD, identified 74 neurological tests and procedures that are often unnecessary. Many involve the use of imaging.

“The two biggest areas that might be done more than they should are imaging for low back pain and imaging for headaches,” Callaghan said. “It’s a big problem and it costs a lot of money – we’re talking a billion dollars a year on just headache imaging.”

Other researchers believe brain imaging can be used as a valuable diagnostic tool. In a small study at the University of Colorado Boulder, researchers used fMRIs to discover a “brain signature” that identifies fibromyalgia with 93 percent accuracy. They found three neurological patterns in the brain that correlate with the pain hypersensitivity typically experienced with fibromyalgia.

Lady Gaga: Chronic Pain Patients Shouldn’t Feel Alone

By Pat Anson, Editor

It’s rare for a celebrity to talk openly their health problems, but Lady Gaga is speaking up about her battle with fibromyalgia and chronic hip pain. 

During a news conference at the Toronto Film Festival promoting her Netflix documentary Gaga: Five Foot Two, Lady Gaga fought back tears as she described how “liberating” it was for the film to cover her decade-long struggle with chronic pain.

“There is an element and a very strong piece of me that believes pain is a microphone. My pain does me no good unless I transform it into something that is. So I hope people watching it who do struggle with chronic pain know that they're not alone. It's freeing for me ... and I want people that struggle with it to hear me,” the 31-year old entertainer said.

“There is a degree of self-deprecation and shame with feeling in pain a lot. And I want people that watch it — that think there's no way I live (with chronic pain) because they see me dance and sing and don't think that could possibly be — to know I struggle with things like them. I work through it and it can be done. We have to stick together. I don't have to hide it because I'm afraid it's weak.”

In a teaser for the film, there are shots of Lada Gaga wincing in pain as she receives injections on a surgical table. 

"It was incredibly hard, on a basic fundamental human level, to be near someone experiencing pain like that. There's nothing you can do, beyond filming," said director Chris Moukarbel.

"I felt I needed to continue to roll. She was very aware of people struggling with similar chronic pain. She's not even sure how to deal with it.”

a scene from "GAGA: Five FOOT TWO"

“It's a part of me, and I'm grateful to Chris for caring. The compassion is overwhelming. That's why it makes me emotional. It's very touching,” Lady Gaga said.

The singer’s struggle with chronic pain reportedly began with physical and emotional trauma from a sexual assault. She later suffered a hip injury, but hid her pain from fans and her own staff until she required surgery in 2013. The singer now reportedly suffers from synovitis, an inflammation of the joint that can be caused by overuse or injury.

“I hid my injury until I couldn’t walk,” Lady Gaga told Arthritis Magazine in March. “I had a tear on the inside of my joint and huge breakage.

Lady Gaga also recently acknowledged that she has pain from fibromyalgia.

"I wish to help raise awareness & connect people who have it," she wrote in a Tweet.

"Thought ice helped #Fibromyalgia. I was wrong & making it worse. Warm/Heat is better. Electric Heated Blanket, Infrared Sauna, Epsom Baths."

Last November, Lady Gaga posted on Instagram an image of herself sitting in a sauna wrapped in an emergency blanket. Months later, she set aside her pain and soared around a stadium during a spectacular halftime show at theSuper Bowl.  

The singer told reporters in Toronto she was going to take a break from performing and  “slow down for a moment, for some healing.”  That prediction came true days later when she cancelled plans for a concert in Brazil because of severe pain.

"I was taken to the hospital its not simply hip pain or wear & tear from tour, I'm in severe pain. I'm in good hands w/ the very best doctors," she wrote on Twitter. "Brazil, I'm devastated that I'm not well enough 2 come to Rock In Rio. I would do anything 4 u but I have to take care of my body right now."

Lessons about Palliative Care from Extreme Measures

By Roger Chriss, Columnist

The book Extreme Measures: Finding a Better Path to the End of Life by Jessica Nutik Zitter, MD, provides essential insights into palliative medicine and end-of-life care. It also gives important ideas for pain management that are all too often overlooked in healthcare today. 

Palliative medicine became a board-certified subspecialty of internal medicine in 2006. Zitter defines it as “an interdisciplinary approach to managing suffering in the context of medical illness, whether physical, emotional, familial, or spiritual.”

The importance of palliative care cannot be understated. As Zitter explains, over 50 percent of Americans die in pain, and 70 percent die in hospitals, nursing homes and other institutions.

The book opens with Zitter describing her background in medicine and how she came to appreciate the value of reducing the suffering and easing the process of death in the terminally ill.

“It took the palliative care movement to teach me that treating pain early on was one of the most important things I could do for my patients -- almost as important as maintaining blood pressure or treating infection,” she wrote.

American healthcare has focused on preserving life at all possible costs, often without respecting the desires or values of the patient. This is clearly visible in long-term acute care. Zitter tells us that annual admissions to acute care facilities tripled between 1997 and 2006, rising from 13,000 patients to more than 40,000. Of those 40,000 patients, 30 percent were partially or fully dependent on intensive interventions such as mechanical ventilation.  

Zitter calls this a treatment treadmill, a form of healthcare inertia that moves a person along to more aggressive interventions, even when there is essentially no hope of clinical benefit. She describes cases from her own professional experience, including a pancreatic cancer patient whose treatment team at New York Presbyterian was ready and willing to continue chemotherapy with curative intent, despite the spread of metastatic disease and the patient’s deteriorating health. 

In reference to such treatment, Zitter cites the remarks of Charles Blanke, MD, an oncologist, and Erik From, MD, a palliative care physician: “If an oncologist suspects the death of a patient in the next 6 months, the default should be no active treatment.”

In other words, chemotherapy should be given with palliative, but not curative intent.

“Let us help patients with metastatic cancer make good decisions at this sad, but often inevitable, stage. Let us not contribute to the suffering that cancer, and often associated therapy, brings, particularly at the end,” they advocate.

Unfortunately, aggressive treatment with curative intent is not limited to “A-Team” physicians at world-class oncology facilities.

Zitter discusses cases of older adults suffering from kidney failure, pneumonia, and cerebral hemorrhage, all subjected to painful and virtually pointless interventions that in some instances may have been against the patient’s wishes. 

The reasons, she says, are multifold. Doctors are caught in legal and ethical binds or may not realize the severity of their patients’ condition.

One study published in the British Medical Journal found that physicians' estimates of how long patients would live was over five times longer than the actual time they had left.

Similarly, patients may not have a good understanding of their illness or prognosis. Zitter states that “patients are more likely to learn realistic information about their disease trajectory and prognosis while in their doctor’s waiting room than during the actual office encounter.”

The interactions between patients, their families, and treating physicians may also be problematic. Breaking bad news to a patient is difficult for physicians, as Zitter recounts in several places in her book. And this is a problem in medicine in general.

"Doctors with good news were treated as much more compassionate than those with bad news, even when the news was delivered equally empathetically,” she wrote.

The book does not shy away from the ethical challenges of palliative medicine. Zitter relates the story of a patient she calls Mrs. Z, a woman who survived the Holocaust, but was unable to express preferences regarding her care. Zitter explains how difficult the decisions about a patient’s care become when a physician has to guess at the patient’s values and preferences. 

She gives the four principles of bioethics -- beneficence, nonmaleficence, justice, patient autonomy -- as guiding ideas for medical practice. It is not, in her view, a matter of simply “do no harm,” but rather acting in the best interests of the patient while knowing and respecting the patient’s values and preferences. 

Zitter’s focus is patient-centered care, which she states should be “a grounding principle at the core of every subspecialty in medicine, and within the hearts and minds of all physicians everywhere.” The goal is quality of life, restoring or improving function where possible, and easing the act of dying where unavoidable. 

But these ideas go beyond end-of-life care. As Zitter writes at the end of the book: “Palliative care isn’t only for the dying: any patient with serious symptoms or communication needs can benefit.”

She emphasizes this point with respect to pain management: “We should have protocols for a Code Pain like we do for Code Blue.”

The 1903 version of the American Medical Association’s Code of Medical Ethics states: “The medical attendant ought not to abandon a patient because deemed incurable; for, continued attention may be highly useful to the sufferer, and comforting the relatives, even in the last period of the fatal malady, by alleviating pain and by soothing mental anguish.”

We can do much more one hundred years later, but we have to ask ourselves when more becomes too much. Zitter encourages all of us to discuss our healthcare preferences with our family members and clearly document our choices, including those for end-of-life care. Her goal is ultimately the same as ours: to reduce pain and suffering throughout life. 

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.

Is This the Opioid of the Future?

By Pat Anson, Editor

What do you call a pain reliever that doesn't have a name yet, is not FDA approved and may not be available for years?

Nektar Therapeutics calls it the "opioid of the future."

Nektar is a research-based pharmaceutical company that has developed a new type of opioid medication that shows promise in relieving moderate to severe pain, but without the risk of abuse and addiction of traditional opioids like oxycodone or hydrocodone.

The experimental pill -- which for the time being is called NKTR-181 --  has recieved “fast track” designation  from the Food and Drug Administration, but is at least a couple of years away from full FDA approval and a commercial launch.

That hasn't stopped Nektar from promoting NKTR-181. This week it hosted a lunch symposium on the drug at PainWeek -- an industry trade show underway in Las Vegas -- a sign of just how confident the company is that NKTR-181 will receive final approval from the FDA.

"We think we could see approval as early as the end of next year," says Steve Doberstein, PhD, Chief Scientific Officer of Nektar. "So we could see a launch of this product in the first part of 2019. That would be my aspiration. If we have to do more clinical trial work, it would be delayed."

The FDA usually requires at least two "Phase 3" clinical studies to prove a new drug's effectiveness. Nektar has only completed one -- a Phase 3 study of over 600 patients with chronic back pain who reported that their pain scores dropped by an average of 65% when taking NKTR-181 twice daily.

Nektar has also completed smaller safety studies that found recreational drug users had significantly less “drug liking” of NKTR-181 -- even at high doses -- when compared oxycodone. Participants also had less daytime sleepiness and fewer withdrawal symptoms.

"NKTR-181 is quite boring as far as abuse metrics go. Boring is good. That was our goal. It doesn't appear to cause euphoria," says Doberstein.

NKTR-181 is "boring" because of its slow rate of entry into the brain's central nervous system – which significantly reduces the “high” or euphoric effect that recreational users seek. Many pain sufferers don't feel that high when taking opioid medication, they just get pain relief. But in the current regulatory and political climate, the only way a new opioid will be approved by the FDA is if it has a low or non-existent abuse potential.

"We're very focused on the fact that one of the building blocks of solving this problem is going to be a safe pain medication for chronic pain patients to take," Doberstein told PNN. "The things that work best are opioids. But the existing conventional old-fashioned opioids -- oxycodone is 100 years old -- come with an unacceptable side effect profile for many patients. And we think we've made something that is legitimately better. It's the first time in a very long time that a new opioid molecule has been developed."  

Doberstein thinks NKTR-181 has such low potential for abuse that it will not need to come in an abuse deterrent formula that would make it harder to crush or liquefy. The FDA could still require one, however, which would delay the drug's commercialization even longer. The agency is currently reviewing the effectiveness of all drugs with abuse deterrent formulas.

The FDA also has a new opioid policy steering committee that is examining whether the agency sufficiently considers the risk of abuse during its evaluation of new opioids.  That could result in rule changes that Nektar would have to address. Anti-opioid activists and politicians could also pressure the FDA to require more clinical studies on the safety and potential abuse of NKTR-181.

Another potential obstacle is that Nektar still needs to partner with a larger pharmaceutical company to help produce and commercialize NKTR-181 -- which is when the no-name "opioid of the future" will likely get a makeover with a branded name to make it more marketable.

"This is the kind of medicine that we think could be quite significant. It could really change medical practice. That means we need a lot of education, and a lot of outreach to physicians, hospitals, payers, patient advocates and law enforcement. We have a lot to do. And its probably beyond us to do it ourselves. So we'll have a commercialization partner of some kind," said Doberstein, who told PNN he expects Nektar to announce its new partnership by the end of the year.

Dosing Tables for Painkillers 'Fraught with Danger'

By Pat Anson, Editor

Opioid dosing tables that are widely used by doctors, insurers and regulators to determine what constitutes a safe level of opioid medication are "fraught with danger" and could result in patients being under-dosed or overdosed, according to a leading physician's group.

Equianalgesic dosing tables are used to calculate and convert opioid pain medication into milligrams of morphine equivalent daily doses -- often abbreviated as MEDD or MME. The Centers for Disease Control and Prevention, for example, has set 90mg MME as the highest recommended daily dose for most chronic pain patients in its opioid prescribing guideline.

But a new white paper by the Academy of Integrative Pain Management (AIPM) questions the science behind MME conversion tables and whether they are appropriate to use in a one-size-fits-all approach to pain care.

“We felt it was necessary to outline our concerns about the key concept of equianalgesic dosing,” said Bob Twillman, PhD, Executive Director of AIPM. “We have seen policymakers and payers both relying on this concept as if it was based on solid science, and as if individual differences in a number of factors wasn’t important in clinical practice. Doing so can expose patients to significant risks."

Some opioids have different mechanisms of action on opioid receptors in the brain. Patients could also have genetic or biological differences that slow or speed-up the absorption of opioids into the body -- making them either more potent or less effective. As a result, two patients taking identical doses of the same opioid could have different levels of it in their bloodstream an hour later.

None of these differences were recognized by the CDC, Centers for Medicare and Medicaid Services or the Department of Veterans Affairs when they set limits in their opioid guidelines on what constitutes a recommended "safe" dose of pain medication.   

"The practice of setting arbitrary milligram dosing cut-offs as suggested by various regulatory agencies and legally allowed by some states is an attempt to pigeon hole providers into ignoring the approach to medicine," the white paper states. "Rather than assigning irrational rules based on pseudoscience, the regulatory agencies including the CDC and state governments should be targeting ways to increase knowledge and education with regard to opioids to foster safe and efficacious prescribing practices."

Many different opioid calculators and apps are available to help doctors convert oxycodone, hydrocodone, tramadol and other opioid medications into MEDDs or MMEs. It's a common practice that may give physicians peace of mind in complying with government guidelines and insurance company policies. But for patients the benefits are less clear -- and so is the science.

“I’ve been researching and writing about the problems with equianalgesic dosing for the past several years," said Jeffrey Fudin, PharmD, lead author of the white paper. “As I studied this concept, I was shocked by the poor quality of the studies underlying it and by the dramatic clinical effects that could result from an uncritical use of published conversion tables.

"Add to that the fact that some opioid pain medications just don’t fit the concept because of their mechanisms of action, and you have the potential for some serious negative consequences if policies improperly use this information.”

How Chronic Pain Killed My Husband

By Meredith Lawrence, Guest Columnist

So much has been written about the opioid epidemic, but so little seems to be out there about what living with true chronic pain is like. My husband, Jay, lived and died in incredible pain at the age of 58.  As his wife, I lived that journey with him. 

Jay is no longer here to tell his story, but I want the world to see what I saw.  I want you to know how he went from working 60 hours a week doing hard physical labor, until his pain grew worse and he could not even get out of a chair on his own. 

I want you to know the deterioration Jay went through over the last ten years. I want you to know what a good day and a bad day is like when you live with chronic pain.  I want you to know exactly what happened when the doctor decreased his pain medication. And I want you to know how my husband finally made the decision to commit suicide. 

I want people to understand that when chronic pain runs your life, eventually you just want the pain to stop. 

First a bit of history.  I met Jay in 2005, when we both stopped drinking.  Two years later, Jay began to lose feeling in his legs and started having falls, as a result of compressed nerves in his spine. The pain was so bad Jay had to stop working and go on disability, which started his depressive episodes.

JAY LAWRENCE

Jay had a series of lower back and neck fusion surgeries.  This was when he was first prescribed painkillers, antidepressants and anti-anxiety medications.  From 2008 to 2011, Jay tried various treatments to control the pain that lingered even after a third back surgery.  These included steroid shots, nerve blocks and a spinal cord stimulator.  Ultimately he had a drug pump implanted that delivered morphine, in addition to the pain pills he was being prescribed.

In 2012, Jay was diagnosed with trauma induced dementia.  I believe that diagnosis was right, based on his symptoms, but not all of the doctors agreed.  Some believed the confusion was due to high doses of morphine and/or his sleep apnea.  

By 2016, Jay’s confusion and memory issues were increasing. He was on a steady dose of 120mg morphine daily, in addition to the medication he was receiving from his pain pump. 

Jay’s depression seemed to come and go, depending on the day and his pain levels.  He was weaned down on his Xanax to 2mg a day to help him sleep. He was aware of the risks of combining Xanax and morphine. 

JAY AND MEREDITH LAWRENCE

Let me tell you what a good day was like before they changed his medications. I worked a full time job from 2 pm to 10 pm five days a week. I would get home, and Jay would have my coffee ready for me at night.  We would stay up and watch TV until 2 or so.  When it was time for sleep, I went to bed and he slept in his recliner.

We started sleeping apart after his first surgery in 2007. He was more comfortable sitting up in the chair, but could never sleep more than three hours at a time.  He knew sleeping in bed would just keep me awake. 

A good day always meant it was not cold or raining.  On a good morning, he would be up first and get coffee started.  He would take our two miniature pinchers outside in the yard on their leash for potty time. 

We usually had at least one appointment a week, but if not we could have a nice quiet morning.  That meant coffee in front of the TV.  After a couple of hours of that, he might switch over to playing his computer games, but he was never far from his chair. 

A typical adventure for us would involve going to Walmart.  Jay was not able to walk through the store, but he hated using the handicapped carts. I could always see a look on his face when he had to do it.  After going to the store, we might have lunch or an early dinner at Steak n Shake or Cracker Barrel.  It always needed to be some place familiar and comfortable for him.  More than once we sat, ordered and then took our food home because he was in too much pain. 

In the summer we might walk the dogs after dinner.  Just a quick two block walk, but a lot of times he would have to stop halfway and go back home.  A couple of times I had to go get the car and pick him up because his legs just would not support him anymore. 

A bad day was awful for me to watch, and absolutely horrible for Jay to live. It meant no real sleep, just catnaps in the chair whenever he could.  He always made coffee for us, but on a bad day he would forget to add coffee to the coffee maker and we would just have hot water.  The pain was so much he was just distracted. 

On many bad days, I would look over and see tears just running down his face because he was in so much pain.  It also made Jay’s depression worse.  We spent many cold winter nights talking about how much pain would be too much and would make life not worth living.  It is the most horrible feeling in this whole world to hear the person you love most talk about ending their life. 

In January, 2017 Jay’s pain clinic decided they could no longer prescribe the high doses of morphine he was on.  In addition, they were not going to continue seeing him if he decided to stay on Xanax.  The Xanax was prescribed by another doctor, but they did not care.

I begged the pain doctor -- yes, literally begged -- for some other option. The doctor said that if Jay continued the Xanax he would no longer see him.  He would not give another option for medications, and at one point even said that most of his patients with pain were “making it up.”

The last thing the doctor said to us will stick with me forever.  He said, “My patient’s quality of life is not worth losing my practice over.”

When we left that day, we were barely in the car and I knew what Jay was going to say to me.  I will never forget how sad his voice was when he told me this was it for him. He was not going to continue to live like this.

Through the month of February, as Jay’s medication was decreased, we spent time doing things we did not normally do.  We went out on Valentine’s Day, he bought me the first jewelry he had bought since my engagement ring, and we went out to a fancy restaurant for dinner.  Jay tried to cram in as many good memories as he could into that last month, but I knew it was costing him.

Jay’s next doctor’s appointment was scheduled for March 2, and we knew they were going to decrease his medications again.  The night before, he woke me up to tell me it was time.  I knew what that meant, but I tried to be strong for his sake.  We talked all night long about what it meant, and how it should be.  It was the saddest, strangest, longest night of my life. 

Jay knew he did not have enough pills to kill himself.  He also knew that if he were to try and purchase a gun, they would not sell it to him.  It would have been almost obvious what he was going to use it for. 

In the end, I bought the gun that Jay used -- and yes, we talked about the ramifications of that action.  We went to the park where we had renewed our vows in 2015.  We talked in the car for a while, and then we sat in the same place we had cut our wedding cake.  I was holding his hand when he pulled the trigger. .

Through the shock and horror, my immediate feeling was one of relief for Jay. To know that he was finally out of pain was a weight lifted off both of us.

Because I purchased the gun that Jay used to end his life, I was charged under our state's assisted suicide law.  This charge was later reduced to reckless endangerment, and I am currently on probation. People close to me want me to be quiet about my role in Jay’s death, and I was at first. But I cannot continue that way. 

I know Jay wanted me to put his story out there.  I know he wanted people to know what it was like to live with the pain he lived with daily. When the doctor took away Jay’s medications, they took away his quality of life. That was what led to his decision. Jay fought hard to live with his pain for a long time, but in the end fighting just was not enough. 

Something has to be done to wake up the doctors, insurers and regulators to make them see pain patients as real people. People with husbands, wives and children that love them.  People that are suffering and just barely holding on. 

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.

CDC Ignored Warning About Opioid Guidelines

By Pat Anson, Editor

A consulting company hired by the Centers for Disease Control and Prevention warned the agency last year that many doctors had stopped prescribing opioid pain medication and that chronic pain patients felt “slighted and shamed” by the CDC’s opioid guidelines.

“Some doctors are following these guidelines as strict law rather than recommendation, and these physicians have completely stopped prescribing opioids,” PRR warned in a report to CDC in August 2016, five months after the CDC released its guidelines.

“Pain patients who have relied on these drugs for years are now left with little to no pain management options. Chronic pain is already stigmatized. Now chronic pain patients face the stigma of addiction, even when they are using opioids responsibly for pain management.”

PRR is a well-connected marketing and public relations firm based in Seattle that has worked for a number of companies and public agencies, including the Environmental Protection Agency, Starbucks, Nike, and the University of Washington.

PRR was hired by the CDC to improve the agency’s public image and to develop a communication strategy to help educate the public about the CDC’s controversial opioid guidelines.

Those guidelines, which discourage doctors from prescribing opioids for chronic pain, are voluntary and only intended for primary care physicians. But they’ve been widely adopted as mandatory throughout the U.S. healthcare system, causing additional pain and anxiety for millions of pain sufferers.

“Chronic pain patients feel or perceive that the CDC has failed them because doctors are making extreme generalizations in determining appropriate care for their pain patients,” PRR found.

The PRR report to CDC was obtained by Pain News Network under the Freedom of Information Act.  Excerpts from the report can be seen by clicking here.

PRR recommended that CDC take a number of steps to understand why the guidelines were being so poorly received by patients.

“CDC should consider conducting more research to understand the fears and concerns of patients with chronic pain conditions. Understanding this group’s perceptions and fears of the PDO (prescription drug overdose) guidelines will help the CDC more successfully communicate with patient advocacy groups and will help insure their targeted messages are being disseminated to patients,” PRR recommended.

“Overall, this will help CDC message and communicate to those living with chronic pain and help providers and patients understand best care options available to enhance and improve quality of life.”

No CDC Response to Recommendations

There is no evidence that CDC has followed through on the recommendations. When asked if the agency had conducted any research or surveys of pain patients in response to the PRR report, the CDC gave us only a brief and vaguely worded statement. Note the use of the word “will.”

“CDC will evaluate the uptake, utility, and public health impact of the guideline and will monitor and assess physician and patient response to the guideline; based on this information, we will update the guideline in the future, as needed.

CDC continues to develop resources for patients and providers about the risks and benefits of opioid therapy for chronic pain to improve the safety and effectiveness of pain treatment and reduce the risks associated with long-term opioid therapy, including opioid use disorder, overdose, and death.”

CDC pledged in March 2016 to make changes to the guideline “if new evidence becomes available” and said it was “committed” to evaluating the guideline’s impact – “both intended and unintended.”

But in the 17 months since that pledge was made, there has apparently been no effort by CDC to assess the guideline’s impact on pain care, doctors, patients, suicides, addiction or overdoses -- at least none that the agency will talk about.

“We’ve provided you our statement,” a CDC spokesperson said in an email.

PRR also declined to answer any questions about its report or if any follow-up research is being done.

“We are proud of our work, and we respect client communications protocols. Therefore, we refer you to the CDC to ask your questions directly,” said Jennifer Lynch, PRR’s business development manager.

For the record, this reporter was one of five individuals interviewed by PRR last summer, and asked a series of questions about the CDC guideline. Others who were surveyed include Barby Ingle of the International Pain Foundation, Paul Gileno of the U.S. Pain Foundation, chiropractor Sean Konrad, and Dr. Lynn Webster, a pain management expert and past president of the American Academy of Pain Medicine.   

“I was contacted by the PRR firm as well.  I was told that the CDC wanted to know what they did wrong with the opioid prescribing guidelines,” recalled Webster. “I think it is clear that the CDC should have had more input from the pain community in developing the opioid guidelines.

“Any intervention by the CDC or any government agency that affects millions of people should be accompanied with a plan to assess the effect of the intervention. In other words, the CDC should have planned to measure the effect on intended goals and any unintended consequences from the intervention.”

"CDC recommends close follow-up for patients who are using opioids to treat chronic pain, but they don’t seem to be eager to apply that same advice to their own intervention," said Bob Twillman, PhD, Executive Director of the Academy of Integrative Pain Management. "CDC seems to be eager to evaluate the impact of its guideline in terms of metrics such as number of opioid prescriptions written, but they seem to have little concern about assessing the extent to which decreased prescribing is adversely affecting people with pain.

"In all the discussion about the evidence base supporting the guideline, what seems to have gotten lost is a need to develop the evidence base to show how effective or ineffective that intervention has been. Unfortunately, this lack of evaluation is consistent with CDC’s lack of interest in evaluating the prevalence and demographics of chronic pain itself."

Guidelines Made Pain Care Worse

There have been many unintended consequences caused by the guidelines. In a survey of over 3,000 patients and nearly 300 healthcare providers by PNN, eight out of ten patients said their pain and quality of life had grown worse. Many patients are having suicidal thoughts, and some are hoarding opioids or turning to illegal drugs for pain relief.   

Over half of the healthcare providers said they had stopped prescribing opioids or were prescribing lower doses. Many providers also believe the guidelines are ineffective or have made pain care worse:

• 40% believe CDC guidelines have been harmful to patients, while only 22% consider them helpful
• 67% believe guidelines have made it harder for pain patients to find a doctor
• 63% believe the guidelines have not improved the quality of pain care
• 66% believe guidelines have not been effective in reducing opioid abuse and overdoses
• 35% of providers are worried about being prosecuted or sanctioned for prescribing opioids

“I am not sure the CDC is aware of the increased legal trouble many physicians are experiencing as a result of the guidelines. Most of these physicians are just trying their best to help people in pain but are being accused of criminal conduct,” said Webster.

Webster was apparently the only pain management physician interviewed by PRR. The company also reviewed 11 online articles and blogs (about half written by doctors), which gave the guidelines mixed reviews.  PRR's bare bones analysis could hardly be called comprehensive, yet two federal health officials portrayed it as a ringing endorsement of the guidelines by physicians.

“Practitioners are excited to see action taken to address the PDO epidemic,” wrote Tonia Gray and John O’Donnell of the Substance Abuse and Mental Health Services Administration in an appendix to the PRR report. “From our scan of responses, PRR found that many agree this is a step in the right direction to help providers make informed decisions and stem the PDO issue.”

That assessment certainly doesn't reflect the thoughts of Dr. Webster.

“I would urge the CDC to reassess their process and attempt to understand the unfortunate consequences their well-intended but misinformed decisions have had,” said Webster.

“One presumably unintended consequence is the recommendations/guidelines have been adopted as rules and laws, which has resulted in a significant change in care for millions of patients.  The guidelines were never intended to do that – they lack the backing of scientific evidence to be treated as a law.”

CDC has made few efforts to remind doctors, insurers, politicians and state regulators that the guideline is voluntary and only intended for primary care physicians. One of the few was a letter from a top CDC official to Richard Martin, a retired Nevada pharmacist disabled by chronic back pain.

“All of you at the CDC and like-minded groups, individuals, etc. are causing hundreds of thousands, if not millions of people, to suffer in pain needlessly,” wrote Martin, who sent 27 letters and emails to the agency before getting a response from Debra Houry, MD, Director of the CDC’s National Center for Injury Prevention.

“The Guideline is a set of voluntary recommendations intended to guide primary care providers as they work in consultation with their patients,” wrote Houry, who oversaw the development of the guideline. “The Guideline is not a rule, regulation, or law. It is not intended to deny access to opioid pain medication as an option for pain management. It is not intended to take away physician discretion and decision-making.”

Houry’s letter to Martin was dated June 1, 2016, a full two months before CDC received the PRR report, suggesting that CDC was already aware that problems were developing with the guideline and that many physicians considered it mandatory.

CDC 'Propaganda'

To be clear, PRR’s review of patient and doctor attitudes about the guideline was only a small part of the work it performed for CDC. PRR also provided media training to CDC officials, analyzed news and social media coverage of CDC projects, developed logos and brands, shot promotional videos and pictures, and performed other work traditionally associated with public relations projects.

PRR also developed a series of fact sheets and graphics to help CDC promote the opioid guideline – many of which are still in use today.

The graphics advise doctors that “opioids are not first-line or routine therapy for chronic pain” and that physicians should “start low and go slow” when opioids are prescribed. They also encourage doctors to tell patients that “there is not enough evidence that opioids control chronic pain effectively long term.”

One PRR graphic claims that "as many as 1 in 4 people" who take opioids long-term become addicted. The graphic is based on a single study that even the author admits may have been biased and used unreliable data. A longtime critic of the CDC calls the graphic "propaganda."

According to the National Institutes of Health, only about 5% of patients taking opioids as directed for a year end up with an addiction problem. Other estimates put the addiction rate higher and some lower.

prr designed graphic

It’s been difficult to assess how much PRR was paid for its work. Invoices sent to CDC indicate the original budget for the project was $240,596, but there were numerous delays and changes in the work performed. The invoices have been heavily redacted by the agency at the request of PRR, which considers the information proprietary.     

5 Reasons to Max Out on Twitter for PainWeek

By Margaret Aranda, MD, Columnist

More than ever, you need to be on Twitter this week if you love to advocate for pain patients. That’s because PainWeek begins Tuesday, September 5th and runs through Saturday, September 9th at the Cosmopolitan Hotel in Las Vegas.

You won’t find many patients at PainWeek, but there are plenty of doctors. PainWeek is the nation’s largest annual conference for healthcare providers who practice pain management. Over 2,300 physicians, nurses, pharmacists, dentists, psychologists, and social workers will attend seminars on topics ranging from analgesics of the future to opioid constipation to a debate on whether urine drug testing is necessary.

Why should you care about PainWeek and why should you be maxed out on Twitter?

Tweets to #PainWeek are going to get a lot of eyeballs, not only from PainWeek organizers, but doctors, pharmaceutical companies and the news media. It's a good opportunity to show them what pain sufferers are feeling and thinking.

Tweeting is also a great way for patients to spread information and awareness about chronic pain to new pairs of eyes. When you do that, it’s called an "impression.” When someone comments or replies to your Tweet, that's an "engagement.” And when you get a “Retweet” – also known as an #RT -- that's the biggest compliment a Twitterer can give to a fellow Twitterer.

Here are 5 ways pain patients can use Twitter:

1) Advocate: The more people see your Tweets, the more you empower people to step out and be bold for themselves and for others that are suffering in pain. Use uplifting images, music, or quotes interspersed with your Tweets to help get positive attention.

2) Prevent Suicides: The ultimate goal of an advocate is to prevent the most severe outcomes of unrelenting, persistent pain. Those would be patient suicide, spousal suicide, and physician homicide. If we can spread the word about these emerging problems, we can help others hang onto their lives until the nation finally recognizes what is happening in the pain community. 

3) Use Hashtags: Worldwide patient advocacy can reign on Twitter. Try to use 6 to 8 hashtags per Tweet. In addition to #PainWeek, here are some great hashtags to use for the widest outreach:

#bedridden #broken #ButYouDontLookSick #chronic #chronicillness #chronicpain #ChronicPain #disabled #Disability #edRecovery #epatient #ehealth #HomicideDue2Pain #IAmNotANumber  #invisibledisability #invisibleillness #livelife #MedEd #MedX #NoCure #opioids #opioidcrisis #pain #PainManagement #patients #PatientEngagement #PatientExperience #PatientsFirst #PatientsIncluded #PatientsLikeMe #patientsafety #PatientsUnitedForDEAReform #ptsafety #spoonie #Spoonies #SpoonieProblems #SpoonieSpeak #StoriesNotStigma #suicide #SuicideDue2Pain #SupportVeterans #Vets #Veterans

4) Grow: What if every one of us had 10,000 followers each? It's one thing to have something to say, and another thing to show it to as many pairs of eyes as possible. Twitter is very reciprocal, so follow everyone who follows you.

For the same reason, if someone Retweets you, try to Retweet back or at least “like” a few of their Tweets. That's Twitter's culture. It’s reciprocal. 

5) Inspire and be inspired. We learn and grow every day. Sometimes we teach and sometimes we learn from our students. If you love to write or advocate for patients, consider starting a free blog where millions of authors go: Wordpress.com. This way, when you Tweet, it could be one of your own articles, and you can drive traffic to your own website by Tweeting your blog’s address.

#PainWeek is poised to be the most Tweeted pain meeting of the year, so join in on the fun!

"Be empowered to empower." 

Dr. Margaret Aranda is a Stanford and Keck USC alumni in anesthesiology and critical care. She has dysautonomia and postural orthostatic tachycardia syndrome (POTS) after a tragic car accident left her with traumatic brain injuries that changed her path in life to patient advocacy.

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.

Noah the Narwhal: A Children’s Book About Migraines

By Jennifer Kilgore, Columnist

It’s not often that children’s books and chronic pain cross paths, but that is exactly what has happened in Noah the Narwhal, a new book from author Judith Klausner and illustrator Sarah Gould.

I was introduced to Judith by my old law school roommate, who was teaching a course at Boston University on anthropology and disability. She knew the author, who suffers from chronic migraines.

“Does anyone have any media contacts in the chronic pain circuit?” Judith asked. Well, my roommate certainly knew someone. Me!

Judith is a 31-year-old artist who lives in Somerville, Massachusetts, and this is her first book -- ever. You’d never know that by looking at it. The book is well written, slick, colorful and filled with friendly underwater characters who are brought to life in surprisingly little time. 

The story follows Noah, a narwhal whale who suffers from migraines (and who also wears a cute little sweater). I asked Judith why she chose narwhals.

“A couple reasons. One is that I kind of like the idea of a creature that unfortunately some people don’t realize is real,” she told me. (Embarrassing truth: I didn’t know narwhals were real until last year. My husband won’t let me forget this.) 

“Also, some people don’t think migraines are real,” Judith explained. “‘Eh, you have a headache. Get over it.’ I liked that analogy. Then, there’s the visual idea of the pain of a migraine. Noah wakes up with the feeling of a horn growing into his head. So that seems convenient! You just have to turn the horn inside out!”  She laughed.

“That, and narwhals are cool. They’re the unicorns of the sea.”

The story is fairly simple: Noah lives a great life and has wonderful friends, but he also has to deal with terrible migraines that drill into his head at unexpected moments. He tries to keep up with his family commitments, his job, and his social obligations, but his pain flares keep setting him back. At first, his loved ones don’t believe the pain can be all that bad, and they say, “But you were fine yesterday!”

“Today is not yesterday,” Noah keeps telling them. (I want to get that tattooed on my wrist.)

He also has adorable metaphors like, “My head feels like it’s full of sea urchins.”

Noah frets over leaving his friends and family in the lurch, but then they remember all the times that he was there when they needed him, and all the good that Noah has brought into their lives. They realize it doesn’t matter if Noah has to deal with migraines -- they love him, no matter what.

I cried when I read it.

Noah’s story parallels the points in Judith’s life that come out so strongly in the book. “It’s definitely pretty autobiographical,” she said. “I’ve had them (migraines) pretty much my whole life.”

In elementary school, Judith’s parents noticed a pattern and had the foresight to take her to a doctor when the migraines became more frequent and were accompanied by nausea. Eventually they were popping up multiple times a week, and auras started in high school.

The migraines kept a very strict pattern, arriving promptly in the evening at 5 o’clock. They never showed up more than three days in a row, so the fourth day was always clear. Then, in college, everything went off the rails. With no daily schedule, her migraines had no schedule, either -- they decided to strike whenever they wanted, lasting days in a row. Her doctors tried her on preventatives, which caused a host of side effects.

When asked how she dealt with college (she was a studio art major at Wesleyan College), Judith replied, “Not well.” She would let one class suffer each semester, in the hopes of just getting through with her degree.

After graduating, she fell into a depression and her friendships withered, because chronic migraines (having one a day for almost three years) interfered with any work or social schedule.

“With something like a chronic pain condition, you can’t schedule around it,” Judith said. “I was finding myself not able to do these things that everyone around me was doing. I thought I wasn’t strong enough, or smart enough, or I was too lazy, that there was something wrong with me, that I was the problem. And I had a lot of self-hatred around that time.”

Then she saw a migraine specialist who told her, “You know, you’re doing really well with what you have.”

“That was a really important thing for me to hear, at a really important time for me to hear it. Someone gave me permission to stop beating myself up so much,” Judith recalled.

It was out of these experiences that Noah was created. Judith always loved sculpting, writing and picture books. As she told me, “Picture books are not just for kids, and children’s books are a medium that have the opportunity to reach people at a formative age.”

Working from her couch, Judith put long hours into Noah the Narwhal, odds and ends that equaled a full-time job, though only when her body allowed. As those of us with chronic pain know, sometimes the demands of a full-time 9-5 job are impossible, a claim to which Judith can attest. 

For the artwork, she turned to her longtime friend, Sarah Gould. Their relationship goes back more than a decade. She works as a computer programmer on the west coast and earned a master’s degree in landscape architecture, but always wanted to work as an illustrator. The two of them thought that some sort of collaboration would be a fun long-distance project.

Sarah’s soft, precious, approachable artwork is the perfect complement to Judith’s words. Even when she was writing, Judith said she was imagining Sarah’s illustrations. 

Noah the Narwhal works because it is a simple story distilled into even simpler parts. Pain isn’t complicated. Doctors, medications, lab visits, insurance bills and prognoses -- those are complicated. At its core, though, pain is a feeling, a reaction, a response to stimuli. It’s a horn drilling into your head.

Judith understood this perfectly when writing the story. That’s why it works. As she said, “The more we can do to help people realize they aren’t alone, by understanding (chronic pain), the better.”

And it would do us all well to remember, today isn’t yesterday.

Noah the Narwhal is featured on PNN"s Suggested Reading list.

Jennifer Kain Kilgore is an attorney editor for both Enjuris.com and the Association of International Law Firm Networks. She has chronic back and neck pain after two car accidents.

You can read more about Jennifer on her blog, Wear, Tear, & Care.  

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.