October 18, 2017

What is Opioid Use Disorder?

October 18, 2017/ Pat Anson

By Rochelle Odell, Columnist

You’ve probably heard or seen the phrase “Opioid Use Disorder.” It’s a broad term currently being used to describe not only opioid addiction, but patterns of behavior that might be a sign of addiction or could lead to it.

If that sounds like they’re putting the cart before the horse, it’s because they are.

In order to understand Opioid Use Disorder, one must understand the government's stance on opioids. The National Institute on Drug Abuse – which is part of the National Institutes of Health (NIH) – lays it out in a recently revised statement on the opioid crisis:

“Every day, more than 90 Americans die after overdosing on opioids. The misuse of and addiction to opioids--including prescription pain relievers, heroin and synthetic opioids such as fentanyl--is a serious national crisis that affects public health as well as social and economic welfare."

Notice how they lump prescription pain relievers in with heroin and illicit fentanyl? The more I research, the more I find this common thread of illogical thinking. The government consistently lumps pain medication in with illicit drugs.

Here’s another example from the NIH:

“In 2015, more than 33,000 Americans died as a result of an opioid overdose, including prescription opioids, heroin, and illicitly manufactured fentanyl, a powerful synthetic opioid.

That same year, an estimated 2 million people in the United States suffered from substance use disorders related to prescription opioid pain relievers, and 591,000 suffered from a heroin use disorder.”

Substance use disorders “related” to pain relievers? Heroin use disorder? That got me wondering how many drug “disorders” there are.

According to the Substance Abuse and Mental Health Services Administration (SAMSHA), there are six major substance use disorders. Nearly 93,000,000 Americans have a substance use disorder of some kind:

1) Alcohol Use Disorder (AUD): About 17 million Americans have AUD. According to the CDC, alcohol causes 88,000 deaths a year.

2) Tobacco Use Disorder: Nearly 67 million Americans use tobacco. According to the CDC, cigarette smoking causes more than 480,000 deaths a year.

3) Cannabis Use Disorder: Over 4 million Americans meet the criteria for a substance use disorder based on their marijuana use. No estimate is provided on the number of deaths caused by marijuana, if any.

4) Stimulant Use Disorder: This covers a wide range of stimulant drugs that are sometimes used to treat obesity, attention deficit hyperactivity and depression. The most commonly abused stimulants are amphetamine, methamphetamine and cocaine. Nearly 2 million Americans have a stimulant use disorder of some kind.

5) Hallucinogen Use Disorder: This covers drugs such as LSD, peyote and other hallucinogens. About 246,000 Americans have a hallucinogen use disorder.

6) Opioid Use Disorder: Again, this covers both illicit opioids and prescription opioids. In 2014, an estimated 1.9 million Americans had an opioid use disorder related to prescription pain relievers and 586,000 had a heroin use disorder (notice the SAMSHA numbers are somewhat different from what the NIH tells us).

But what exactly is Opioid Use Disorder? Does it mean 2.5 million Americans are addicted to opioids?

No.

The diagnostic codes used to classify mental health disorders were revised in 2013 to cover a whole range of psychiatric symptoms and treatments. Two disorders – “Opioid Dependence” and “Opioid Abuse” -- were combined into one to give us “Opioid Use Disorder.” Few recognized at the time the significance of that change, it's impact on pain patients, or how it would be used to inflate the number of Americans needing addiction treatment.

Elizabeth Hartley, PhD, does a good job explaining what Opioid Use Disorder is in an article for verywell.

Hartley wrote that Opioid Use Disorder can be applied to anyone who uses opioid drugs (legal or illegal) and has at least two of the following symptoms in a 12 month period:

Taking more opioids than intended
Wanting or trying to control opioid use without success
Spending a lot of time obtaining, taking or recovering from the effects of opioids
Craving opioids
Failing to carry out important roles at home, work or school because of opioid use
Continuing to use opioids despite relationship or social problems
Giving up or reducing other activities because of opioid use
Using opioids even when it is unsafe
Knowing that opioids are causing a physical or psychological problem, but using them anyway
Tolerance for opioids.
Withdrawal symptoms when opioids are not taken.

The last two criteria will apply to almost every chronic pain patient on a prescription opioid regimen. So might some of the others. Most of us develop a tolerance for opioids, and if they are stopped or greatly reduced, we will experience withdrawal symptoms. We simply cannot win for losing.

If you learn your physician has diagnosed you with Opioid Use Disorder, be sure to ask them what criteria were used and why was it selected. Ask if you should see a doctor more knowledgeable about diagnostic codes and psychiatric disorders.

Remember, knowledge is power. Take this information with you on your next visit to the doctor if you suspect you have been diagnosed with Opioid Use Disorder and your medications have been cut or reduced.

I hope what I have written helps you further understand exactly what we are facing and why. To be honest, it makes me want to wave the white flag, but I know that cannot happen. We have to fight. Fight for proper care for a chronic disease or condition we didn't ask for or want. We can’t live the rest of our lives in severe, debilitating pain when effective treatment is available.

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

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

October 15, 2017

Why I Keep a Pain Journal

October 15, 2017/ Pat Anson

By Barby Ingle, Columnist

In 2002, I was in what was thought to be a minor car accident. After months of getting worse, noticing new symptoms and doctors telling me it was all in my head, I set out to find answers that made sense for what was happening to me.

Many of the medical tests that were performed did not show any problems. Even so, my symptoms were still bad and getting worse. I started physical therapy about a month after the accident, which was excruciating and seemed to make things worse.

Flash forward three years, and I found my way to a pain clinic here in Arizona. My doctor took the time to listen to my history and examine me. The thought of being examined again by a new doctor was frightening. After an hour with me, the doctor said I might have Reflex Sympathetic Dystrophy (RSD), a painful neurological condition. A test later confirmed I had RSD -- as all my signs and symptoms had pointed to for all that time.

After finding so little information out there about RSD and having so many doctors try to treat me who did not know about it, I realized that I was the one who had to teach my caretakers.

Many doctors who are not connected with a research hospital or university do not have the time to stay up-to-date with the latest information on RSD and other chronic illnesses. RSD does not always respond to treatments that relieve other types of chronic pain. Even among RSD patients, there are different responses to treatment.

The condition affects many aspects of the patient's life in varying degrees. For me, the simple things are the toughest. Activities of daily living, personal grooming, and my social and personal life have all been affected. I was not prepared for a catastrophic injury and lost my professional life during the bad days of RSD. I have had to adjust my daily routine because of the difficulty of performing simple tasks.

I also learned to participate in very limited leisure activities, as I had to find my tolerance levels and work within them. I used to be very athletic, and loved hiking, biking and dancing. I constantly worked out and trained my body. Now I have a limited exercise regimen.

Because of my pain, falls and blackouts, as well as medication side effects, I am no longer able to drive. I need assistance with shopping, cooking, remembering things and traveling. I am in constant need of assistance, which makes traveling, social activities, personal care and holidays more complicated.

I have difficulty sleeping, lack energy and experience stress in my daily life. All of these help the cycle of pain continue.

Over time, I have found that pre-planning for daily events, activities and trips is not something I should do out of convenience; it is something I have to do to be able to function at even a basic capacity.

When I started a daily journal, I found that prayer, having a low-stress lifestyle, and staying hopeful keeps me in a positive place mentally. It also helps me keep my records organized, allowing for better healthcare. I have learned not to sweat the small stuff, to let go of troubles from the past, and look for ways to better my future. With a good team around you, the same is possible for you.

Like most chronic pain conditions, RSD is an invisible disability, which makes it harder for people to “see” your pain. People often have misconceptions about people with disabilities, so I disclose my condition to anyone who will listen, to let them know that RSD exists, and that early detection and proper treatment are important for RSD patients to have any chance of remission.

The more people I educate, the better the chances will be that someone else with RSD will have it easier. I know what I live, I journal it and I want to help others. Maybe a journal will help you.

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.

October 11, 2017

Sessions Seeks to End Protection for Medical Marijuana

October 11, 2017/ Pat Anson

By Ellen Lenox Smith, Columnist

If you’re one of the millions of Americans who uses medical marijuana, you need to be aware of something going on in Congress that could affect your legal right to use cannabis.

A few months ago, Attorney General Jeff Sessions wrote a letter to congressional leaders urging them to ditch an amendment that effectively prevents the Department of Justice from investigating or prosecuting cannabis users or sellers in states where medical marijuana is legal.

The Rohrabacher-Farr amendment first became law in 2014. It forbids the Justice Department from using any funds to prevent states from “implementing their own State laws that authorize the use, distribution, possession, or cultivation of medical marijuana.” Last year the Ninth Circuit Court of Appeals ruled that the provision protects marijuana growers, patients and dispensaries who are complying with medical marijuana laws in 29 states and the District of Columbia.

Those of us involved in our own state's medical marijuana programs felt safe and legally protected – until the Attorney General wrote his letter.

Although the amendment has been attached to spending bills for years, Sessions wants to make sure it’s not in appropriations legislation for 2018. He stated in his letter that the court ruling gives dangerous criminals a loophole to protect themselves from prosecution.

Sessions says the country is “in the midst of an historic drug epidemic and potentially long-term uptick in violent crime,” and the Justice Department “must be in a position to use all laws available to combat the transnational drug organizations and dangerous drug traffickers who threaten American lives.”

Sessions appears to be deliberately equating medical marijuana use with the so-called opioid epidemic. But an emerging tide of research indicates otherwise. Opioid overdoses have actually declined in states where marijuana is legal and many pain patients prefer cannabis over opioid medication.

John Hudak of the Brookings Institution called Session’s letter a "scare tactic” that just might work. He told The Washington Post that Sessions "could appeal to rank-and-file members or to committee chairs in Congress in ways that could threaten the future of this Amendment."

So far Session’s arguments haven’t gained much traction in the U.S. Senate. In July, the Senate Appropriations Committee voted to keep the Rohrabacher–Farr amendment in the appropriations bill for 2018.

“The federal government can't investigate everything and shouldn’t, and I don’t want them pursuing medical marijuana patients who are following state law,” Vermont Sen. Patrick Leahy (D) told The Hill. “We have more important things for the Department of Justice to do than tracking down doctors or epileptics using medical marijuana legally in their state."

But the Senate and House must work out a compromise, and it’s unclear how the House will vote. Last month the House Committee on Rules voted to remove the amendment from the House appropriations bill after Republican leaders said it was too “divisive.”

In the past, there has been broad bipartisan support for the amendment in Congress. One of its sponsors, California Rep. Dana Rohrabacher, is a conservative Republican who has long supported marijuana legalization. Without his amendment, Rohrabacher says Congress would be undermining the rights of states to make their own laws.

“The status quo for four years has been the federal government will not interfere because the Department of Justice is not permitted to use its resources to supersede a state that has legalized the medical use of marijuana,” Rohrabacher told his colleagues.

Many Americans agree. Support for medical marijuana is at an all-time high, reaching as much as 94 percent in one poll.

Where do you stand? Where does your congressman? Should medical marijuana be protected from federal prosecution in states where it is legal?

I, for one, depend on cannabis for life. And will do all I can to let my voice be heard.

Ellen Lenox Smith lives with Ehlers Danlos syndrome and sarcoidosis. Ellen and her husband Stuart are co-directors for medical marijuana advocacy for the U.S. Pain Foundation and serve as board members for the Rhode Island Patient Advocacy Coalition.

For more information about medical marijuana, visit their website.

October 10, 2017

What Are the Odds of Failing a Drug Test?

October 10, 2017/ Pat Anson

By Roger Chriss, Columnist

What are the odds that a person who tests positive for an illicit drug is actually using that drug?

That is a vital question in pain management and the opioid crisis, because millions of pain patients undergo drug tests regularly and some are falsely accused of failing them. The answer is not just a matter of looking at the accuracy of the test.

In a simple situation, like a toss of a coin or a roll of a die, computing the probability of an outcome is elementary. Most people realize that a toss of a coin has an equal chance of coming up heads or tails.

But drug testing is not as simple. It is an example of conditional probability. A drug test that is 95% accurate will not find drug users 95% of the time. That is because the test is applied to both drug users and non-users. We have to use a calculation known as Bayes’ Theorem to determine the real probabilities.

Bayes’ Theorem calculates the probability of one event happening given that another event has already happened. In terms of drug testing, this means the probability that a randomly selected person who has a positive test did in fact use that drug.

To perform the calculations, we need to know two things:

The accuracy of the drug test
The “base rate” at which drug use occurs in the population at large.

The accuracy of drug tests varies widely. A 2010 study estimated that drug tests generally produce false-positive results in 5% to 10% of cases and false negatives in 10% to 15% of cases.

Data on the base rate of drug use also varies. The CDC claims as many as 25% of chronic pain patients develop signs of opioid use disorder. However, a Cochrane review found addiction in less than 2% of long-term opioid users.

This gives us four general scenarios to consider when estimating the probability that a chronic pain patient with a positive test result is actually misusing opioids:

Scenario I (25% base rate; 95% accurate drug test): 90%
Scenario II (25% base rate; 90% accurate drug test): 83%
Scenario III (2% base rate; 95% accurate drug test): 29%
Scenario IV (2% base rate; 90% accurate drug test): 17%

With a high base rate of opioid misuse and a more accurate test, the probability is high at 90 percent. On the other hand, as the base rate falls and test accuracy decreases, the probability drops significantly, down to 17 percent. This means that the probability of a person getting a false positive result increases.

The Base Rate Fallacy

Bayes’ Theorem clearly shows that the base rate of drug use has a large effect on the probability that a person will get a false test result. Because clinical decisions and healthcare policy are often based on the results of such tests, knowing the probabilities is vitally important.

The base rate fallacy occurs when a decision is made without taking the real base rate into consideration. As shown above, the upper value of 25% is more than 10 times the lower value of 2 percent, indicating a high degree of uncertainty in the base rate.

Moreover, the base rate is not the same in all locations or across all populations. Drug abuse is known to be higher in some places and among some age groups. The accuracy of drug tests also represents an average, but factors such as biochemical individuality and testing conditions may influence actual performance.

Further, drug testing is not an entirely random process. For instance, prior to prescribing opioid medication, a doctor may perform a risk assessment using an Opioid Risk Tool. A doctor may also have hints that a patient is abusing opioids to motivate testing. In either case, randomness is lost and the base rate shifts.

Conditional probability produces counter-intuitive results, with a high degree of dependence on the base rate -- itself a number that requires constant attention.

The bottom line is that drug testing alone is not foolproof. Clinical judgment by experienced physicians, combined with information such as pharmacy data, pill counts and medical records, will always get better odds than drug testing alone.

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.

October 09, 2017

A Pained Life: It Never Hurts to Ask

October 09, 2017/ Pat Anson

By Carol Levy, Columnist

Recently a documentary was released on Netflix about Lady Gaga. A part of her story is that she has fibromyalgia.

I have not seen the film, but understand she devotes a little time to detailing and showing how she deals with chronic pain, both physicially and emotionally. Articles and posts abound in chronic pain social media about the film and Lady Gaga's pain.

The odd thing is many of the writers start by complaining that people don’t understand their pain, why they have to take drugs, and why they can't do many things that seem so easy to everyone else.

Then, strangely, they do exactly what they complain happens to them. They express doubts about Lady Gaga’s diagnosis, wonder if she is malingering, and say she can't really have fibro because her level of suffering and disability is not the same as theirs.

It seems we in the chronic pain community want to have our cake and eat it, too. We want to have the discussion about chronic pain made public. We want awareness. But the awareness has to be exactly the way we want it or we don't want it at all

Many in the pain community express feelings that anything in the public eye that even hints of chronic pain should be about the person's struggles and life interruptions caused by pain. Lady Gaga is a case in point.

“She didn’t talk enough about fibro,” writes one person, others echoing the sentiment. “I thought from all the hype I heard it was going to be about that.”

It would have been terrific if Lady Gaga had devoted more time to her disease and its effects on her life, but then that really was not the point of the documentary.

“Some of the film may actually be hurtful to some of us, as it shows her being able to do very physical things that are often beyond many of us as we struggle with the pain. If you have watched her perform she is not a sedentary singer,” wrote one poster on social media.

Maybe it is worth asking her. Could you do something more, maybe another film or even just a commercial, that would bring needed attention to chronic pain and its effects on our lives?

Last month was Pain Awareness Month, and it went by with almost no awareness or notice at all. Lady Gaga might be the awareness hook that we need.

But we need to stop lamenting, hoping and complaining that no one is doing enough. It is past time to take the bull by the horns. We have to do it ourselves. As they say, if not now, when? If not us, who?

And who knows? If someone or a bunch of someones ask Lady Gaga or another celebrity to be our voice, they might actually respond. If we don't ask, we’ll never know if they want to help the pain community.

The worst they can say is no. And maybe, just maybe, we can get a “Yes.”

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.

October 04, 2017

How the FDA Can Help Solve the Overdose Crisis

October 04, 2017/ Pat Anson

By A. Rahman Ford, Columnist

As the U.S. Food and Drug Administration prepares to issue new guidelines on stem cell therapy, it must give due consideration to the ever-increasing number of Americans who suffer from intolerable chronic pain.

According to the National Institutes of Health, over 25 million American adults suffer from chronic pain and nearly 40 million have severe levels of pain. To alleviate that pain, many turn to addictive opioid medications, sometimes with deadly consequences.

Under former FDA Commissioner Robert Califf, the agency took several steps to reduce opioid addiction, including improved warning labels, enhanced education for prescribers, and the development of abuse-deterrent drug formulations.

Unfortunately, those initiatives have had negligible success in stemming the tide of opioid overdose, perhaps because, as Califf himself put it, “financial incentives in the (pharmaceutical) industry can lead to a focus on short-term profits instead of patient well-being.”

Indeed, although opioid addiction has seeped into the public consciousness and ascended to the top of many politicians’ agendas, the attention has been largely rhetorical -- practical, immediate-term solutions to the overdose crisis remain few and far between. Clearly, new approaches are needed.

Stem cell therapy can be a meaningful intervention in the effort to eradicate chronic pain and end opioid deaths. The fact is that many physicians are already using stem cells to treat chronic pain safely and effectively, and have been doing so for years. But with the issuance of new guidelines, which are expected this fall, the FDA could very well limit access to stem cell therapy, even to stem cells that come from our own bodies.

Current FDA Commissioner Scott Gottlieb recently said stem cells hold “significant promise for transformative and potentially curative treatments,” but some unscrupulous stem cell clinics were preying on sick people desperate to find cures. While cracking down on these bad actors, Gottlieb must not lose sight of the fact that stem cell therapy is a potential solution to everyday Americans’ chronic pain.

Science Supports Stem Cells for Pain

Let’s take a brief look at some of the recent scientific literature about stem cell therapy, and how it can attenuate or even eliminate the chronic pain that results from a myriad of medical conditions.

A 2014 study in the Journal of Pain Research made the case for the use of adult stem cells to treat neuropathic pain. Due to the "scarce response to the conventional analgesic therapy,” the authors said it was “mandatory to identify and propose novel approaches" to neuropathic pain. They noted the “fast onset and long-lasting effect on pain relief that one injection (of stem cells) could provide,” an outcome far superior to drugs which require chronic administration, have side effects, and require periodic dose increases.

That same year, an editorial in the British Journal of Medical Practitioners entitled “Stem Cell Therapy: The Future of Pain Medicine” claimed that “recent advancements for SCT (stem cell therapy) for pain due to degenerative diseases in the spine and joints are promising and indicative that SCT will undoubtedly play a major role in the future.”

A 2015 review in the World Journal of Stem Cells examined the plausibility of using stem cells to treat acute, chronic and neuropathic musculoskeletal pain, concluding that stem cells “show promise for several chronic non-life-threatening yet disabling conditions.”

Just this year, in a review published in Frontiers in Immunology, researchers said stem cells derived from a patient’s bone marrow “may provide efficient, long-term, and safe therapy for patients with painful diseases” such as osteoarthritis, degenerative disc injuries, inflammatory bowel disease, neuropathic pain, and pain associated with cancer and radiotherapy.

Stem cells can alleviate pain in a myriad of ways. A recent study published in Military Medicine found that a low-dose stem cell injection significantly attenuated neuropathic pain in injured rats, regardless of whether the cells were derived from bone marrow or adipose (fatty) tissue. The authors concluded that the therapy “has great potential to emerge as an innovative, safe, efficacious, and cost-effective therapy for the treatment [of] neuropathic pain or other chronic pain conditions.”

A 2016 study published in International Orthopaedics followed 26 patients who suffered from chronic discogenic lower back pain who were injected with their own bone marrow concentrate. All 26 patients had a significant decline in their pain and disability scores, and were able to avoid surgery.

Stem Cells Can be a Remarkable Solution

As the above sampling of literature suggests, stem cells can treat chronic pain caused by several illnesses. It is important to note that no subjects in any of the referenced studies experienced significant adverse effects. Safety was simply not an issue. The results regarding the use of autologous stem cells – a patient’s own stem cells -- are especially noteworthy because, so long as the cells are “minimally manipulated,” under current FDA regulations approval is not required.

If this were to change due or be restricted under new FDA guidelines, many patients would be left with no viable pain treatment options. Let us not forget that former Texas governor and current Secretary of Energy Rick Perry once suffered from chronic back pain, and found no answer in surgery or pills. Perry found relief in his own stem cells. All of us deserve that chance.

On June 13 of this year, Commissioner Gottlieb made it clear that “everyone at the FDA is committed to focusing on all aspects of the [opioid] epidemic” and promised to seek input from the public “to share additional steps and information that the FDA should consider in addressing these challenges.”

Commissioner Gottlieb, a growing number of Americans like Secretary Perry are already using stem cells to solve problems that current treatment modalities have failed to cure. They're traveling to clinics at home and abroad because their pain is disabling and insufferable.

Commissioner Gottlieb, by adopting a forward-thinking policy on stem cell therapy – specifically autologous stem cell therapy – you can fulfill your promise to the American people.

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.

September 30, 2017

Painful Opioid Statistics

September 30, 2017/ Pat Anson

By Roger Chriss, Columnist

The opioid crisis continues to worsen, and media coverage continues to be overly simplistic.

Vox recently reported the U.S. “absolutely dwarfs” all other countries in opioid prescriptions, in a story headlined “America’s huge problem with opioid prescribing, in one quote.”

"Consider the amount of standard daily doses of opioids consumed in Japan. And then double it. And then double it again. And then double it again. And then double it again. And then double it a fifth time. That would make Japan No. 2 in the world, behind the United States," Stanford psychiatry professor Keith Humphreys told Vox.

Although Humphreys’ statement is accurate, it is a misleading oversimplification that omits important context, including the rising rate of heroin and fentanyl-related deaths, and the shifting landscape of opioid prescribing.

First, this statistic represents an average (or mean). It does not include the variance, a measure of how many people use what quantity of opioids. The average person in the U.S. does not use any opioids at all. But people suffering from opioid addiction may use a large quantity of opioids every single day of the year.

In statistical work, reporting an average without the variance is considered sloppy at best, misleading or manipulative at worst.

Humphreys’ statement also fails to distinguish between the legal and illegal use of “pharmaceutical opioids,” a convenient term to refer to legally manufactured opioids, regardless of whether they are used for valid medical purposes, or diverted, shared or sold.

In other words, the much higher number of pharmaceutical opioids in the U.S. compared to Japan reflects both medical use and misuse.

Further, this statistic assumes that Japan’s level of pharmaceutical opioid consumption is somehow better. In fact, Japan has a well-documented history of undertreating pain because of fears about opioid addiction. Pain is so poorly treated in Japan, according to The New York Times, that the government launched a campaign in 2007 urging patients to request pain relief, with hospital posters urging patients to “Tell Us About Your Pain.”

Japan continues to struggle with high levels of chronic pain. A 2015 review found a “high prevalence and severity of chronic pain, associated factors, and significant impact on quality of life in the adult Japanese population."

The Vox article also fails to point out that opioid prescribing in the U.S. peaked in 2010 and has been declining ever since. Yet opioid addiction and overdose deaths have been steadily rising, fueled largely by illegal opioids such as heroin and illicit fentanyl.

Vox is not alone in oversimplifying a complex problem. CNBC, for example, reported last year that “80 percent of the global opioid supply is consumed in the United States.”

Many others have repeated that claim, including Missouri Sen. Claire McCaskill, who recently tweeted that, "We have 5% of world population. 80% of opioids."

PolitiFact ran a fact check on McCaskill’s numbers and found them “greatly exaggerated.”

“While the United States is clearly the largest consumer of opioids, it, at most, accounts for roughly 30 percent of global consumption. We rate McCaskill’s claim False," PolitiFact said.

This is a significant issue in the opioid crisis. While some journalists, politicians, and even physicians name villains, people suffering from opioid addiction continue to get substandard treatment. And people who benefit from opioid therapy are struggling more and more to find physicians willing to prescribe and pharmacies willing to fill opioid prescriptions so they can have a reasonable quality of life.

No one is suggesting that the U.S. needs more opioids, particularly in the acute care setting. Opioids should be prescribed with close monitoring by physicians with experience in pain management. The research literature and public health studies agree that over-prescribing occurred, especially in pill mills and dubious pain clinics. In addition, drug theft and diversion are huge problems.

So while a statistic that invokes multiple doublings for comparative purposes sounds impressive, its context is much more important. We need to focus on the crisis as it really is, without exaggeration, if we hope to have meaningful progress ending it.

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.

September 28, 2017

Chronic Pain in the Workplace

September 28, 2017/ Pat Anson

By Lana Barhum, Columnist

Unless you have lived with chronic pain, you cannot begin to fathom the physical and psychological torture many people in pain go through. Chronic pain is an issue so often ignored in the workplace.

About a year ago, I wrote an article about “presenteeism,” which basically is the act of attending work while you are sick. But presenteeism isn’t just showing up for work when you have a cold or the sniffles, it is showing up to work every day despite pain, fatigue and other symptoms that come with chronic pain and illness.

Presenteeism was recently researched by the Global Corporate Challenge (GCC), which found that while employees with chronic health conditions took an average of just four sick days a year, they confessed to being unproductive at work an average of 57.5 days a year.

The GCC report estimated that the cost of presenteeism was 10 times higher than absenteeism. Absent workers cost employers in the United States, United Kingdom and Australia about $150 billion a year, but those who came to work and were not fully productive cost them $1,500 billion.

The study’s authors noted the importance of companies to improve productivity by putting their focus on reducing presenteeism.

I am not sure employers know or even care how many of their people are dealing with chronic pain challenges. And if they do, what expectations do they have of these employees? Do they even understand the difficulties of being productive when you are physically hurting?

Chronic Pain and Lost Productivity

According to another report from the Institute of Medicine Committee on Advancing Pain Research, Care and Education, chronic pain is costing the U.S. economy between $560 to $635 billion annually in healthcare costs and lost productivity. While many employees who live with pain continue to work, they struggle to be productive.

One possible solution – opioid pain medication – is no longer easily accessible, even for pain patients who don’t misuse prescription drugs and who want to have normal, productive lives.

Research has shown that about two million Americans misuse opioids, and a good chunk of them wind up in emergency rooms. But that statistic ignores the millions of people that need pain medications and don’t abuse them.

Too many prescribing guidelines -- and fear of DEA oversight -- keep our doctors from writing prescriptions for pain medication, even for medicines that are relatively safe and have low risk of addiction. Guidelines and insurance reimbursement policies have basically taken discretion away from responsible doctors in managing patient pain care.

Some chronic pain sufferers won’t even ask their doctors about pain medication because of the stigma attached to opioid misuse and abuse. Up until recently, I was one of them. I wouldn’t ask my doctor for medication to manage my pain because of that very stigma. But my pain levels got so bad I had no other choice. And my doctor, like so many others, was wary of writing a prescription and didn’t give in until I was practically begging. She explained she trusted my judgment, but was limited in her options due to government guidelines.

Working with Pain

The biggest concern I have on an almost a daily basis is how long I will be able to continue working. Will my boss get tired of the mistakes I make on the days I am hurting and my focus is off due to pain and lack of sleep? While my employers know I live with pain from rheumatoid arthritis and fibromyalgia, they really don’t care – most likely because my disability is invisible, but also because it isn’t their problem – it is mine.

I am not sure most employers or coworkers understand the overwhelming and difficult responsibility of holding down a full-time job when you live with chronic pain. Even if your employer provides accommodations – like workspace adjustments and options to work from home on occasion – the basic requirements of the job can still be great when you are hurting.

In an ideal world, employers would offer options for pain management on the job -- in the form of wellness programs and workplace accommodations – so we could work at full capacity. Employees who feel supported will seek out all available help, feel better, and function better on the job.

But most employers have yet to recognize the crucial role they play in helping to manage the pain epidemic in this country. They see chronic pain as a personal problem, rather than a business dilemma. Until that changes, we are on our own to suffer in silence and figure out how to work better, despite the pain that we endure.

Lana Barhum is a freelance medical writer, patient advocate, legal assistant and mother who lives with rheumatoid arthritis and fibromyalgia. Lana uses her experiences to share expert advice on living successfully with chronic illness. She has written for several online health communities, including Alliance Health, Upwell, Mango Health, and The Mighty.

To learn more about Lana, visit her website.

September 15, 2017

Don't Forget Chronic Pain Patients During Disasters

September 15, 2017/ Pat Anson

By Janice Reynolds, Guest Columnist

With the recent hurricanes in Florida and Texas, there was an Associated Press story you may have seen.

Titled “Hurricanes Drive Addiction Issues into Public Square,” it dealt with the plight of people addicted to alcohol, tobacco, pills or heroin when disaster strikes. While the article was not the “yellow press” we often see in the coverage of opioid medication, it did err by the sin of omission.

People with all sorts of health problems suffer during a natural disaster. Not only did the AP story not mention this, I didn’t see it covered elsewhere in the national news.

People living with pain are likely to be the ultimate casualties. Anxiety and stress increases pain levels, and some pain sufferers will be difficult to evacuate.

Most critical is the loss of treatment. If a patient is taking opioids as part of their pain plan, they may not be able to take their medication with them (when leaving in a hurry) and getting a new prescription or even someone willing to fill it would likely be impossible.

In a shelter, theft would be a worry. This applies to non-opioid medication as well. Non-pharmaceutical interventions might also be unavailable. If pain was already poorly managed -- as it often is -- it would be even worse.

As we know, pain has many harmful side effects that lead to other health emergencies, including suicide. People in pain during a disaster are going to be even more vulnerable than usual.

a hurricane harvey evacuee (texas national guard photo)

All chronic health problems are affected by natural disasters. In the aftermath of Hurricane Katrina in 2005, thousands of cancer patients had their treatment disrupted. Records were lost and many did not know their treatment protocol or where they were in it. Some did not even know the type of cancer they had.

Of course, medication for other conditions was lost as well. People living with heart conditions, diabetes, kidney failure, AIDS, high blood pressure, COPD, multiple sclerosis, Alzheimer’s and many other chronic health issues need special medications or treatments. For many, pain is a part of their disease as well.

Patients in hospice or nursing homes are especially vulnerable. Eight elderly nursing home residents in Florida died this week in sweltering heat when the facility they were in lost its air conditioning during Hurricane Irma.

The media has an ethical obligation to address the problems of natural disasters related to chronic health problems, especially for chronic pain, and not just limit their concern to addicts. It is the right thing to do.

Janice Reynolds is a retired nurse who specialized in pain management, oncology, and palliative care. She has lectured across the country on pain management and co-authored several articles in medical journals. Janice lives with persistent post craniotomy pain and is active with The Pain Community.

September 14, 2017

Living With an Invisible Monster

September 14, 2017/ Pat Anson

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.

September 12, 2017

Learning How to Live with Chronic Pain

September 12, 2017/ Pat Anson

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.

September 11, 2017

A Pained Life: The “I Dunno” Answer

September 11, 2017/ Pat Anson

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.

September 06, 2017

How Chronic Pain Killed My Husband

September 06, 2017/ Pat Anson

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 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.

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.

September 03, 2017

5 Reasons to Max Out on Twitter for PainWeek

September 03, 2017/ Pat Anson

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.

September 02, 2017

Noah the Narwhal: A Children’s Book About Migraines

September 02, 2017/ Pat Anson

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.

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