How to Cultivate Hope and Not Dwell on Suffering

Pat Akerberg, Columnist

For the millions of people arm-wrestled into submission while they endure lives compromised by chronic pain, the kinds of suffering that go with it require no explanation.

Suffering comes in all forms of physical challenges (unrelenting pain, incurable illness, complications and limitations), psychological struggles (depression, anxiety, self-esteem, image and identity) and spiritual dilemmas (faith, meaning, purpose and acceptance).

Hope, an invisible yet essential holistic supplement, strengthens our resolve to face these challenging twists and turns by making the unbearable, bearable, and somewhat negotiable. 

Hope gives rise to a sense of meaning, purpose and possibility in our lives. Without it, our outlook becomes bleak and our emotional landscape flat. 

So how does hope link up with pain and suffering? 

I believe there are identifiable stages that occur between the degrees of suffering and hope we experience, creating a rise and fall relationship between them. 

When suffering is low, it makes sense that our hopefulness would be at a high level.  Like it was when I was lucky enough to be a part of what I call the “worried well” population.

Call that the “fortunate” stage when a person has not yet been tested by any of the tougher blows life can deliver. Unconstrained at this stage, hope can be defined as the belief that something better is always possible.

Inversely, the middle or “setback” stage knocks hope off its very axis, as our health is threatened.  Here we define hope as getting better, and fervently invest all of our energies in chasing that outcome.

However, if the condition becomes chronic, a person can feel quite powerless, with little control over being able to decrease their kinds or levels of suffering.  Their ability to feel hope about improving their situation plummets.

We usually think in terms of beginning, middle and end with stages.  However, what if there’s no end in sight, no “moving past” or “moving through” our medical plight?  Chronic illness shoves us into the “enduring” stage.

While it may seem that hope eludes us in this stage, at a time when it is needed the most, that doesn’t mean it no longer exists or is unavailable. But the journey to uncover that hope is tricky. Some tell inspirational stories about being transformed by rediscovering hope in a new way. 

Others seem to find a more self-empowering approach that influences how they will allow the latter stage to impact them. It’s not the happy, faux version of hope, but the livable version rooted in the hard work of finding a personalized realism.   

Feeling stuck in the “setback” stage for years, it hit me that not only was I irreparably damaged by the surgery promised to “cure” me, I was also medically conditioned by multiple doctors that my situation was hopeless – harmed beyond help or relief.

I have come to define this equally destructive medical implication as “learned hopelessness.”  No, not the popularized “learned helplessness.” People who learn to take action on the things within their control and bypass those they can’t aren’t helpless. 

But a medical system that has little intellectual curiosity, compassion, or time to devote to tough cases can create further assault by unwittingly kicking the hard can of truth right over the line into hopelessness. That was true for me, until I realized that both suffering and hope needed to be untangled and redefined to fit my new reality if I was ever to endure the “enduring” stage. 

With a damaged trigeminal nerve, I was still defining hope in improbable degrees of “getting better.”  Even just the notion of holding a compromised, shaky steady state felt like defeat vs. a small victory. 

Overcoming Emotional Traps

Once I caught on to these medical, mental, and psychological traps, I had to modify hope into feasible terms by translating it into the smallest incremental possibilities, and then some progressively larger ones. 

I’m talking simple things like being able to take a short walk, Skype with my granddaughter, have a short visit with a friend, follow a yoga CD, go to a retail store, and such. Sometimes my best hope equates to making it through the next hour. 

As I was able to redirect my focus on those smaller things in the enduring stage, I found that my repertoire for cultivating a smidgeon of hope expanded. I was onto something within my control that could influence my levels of suffering and hope.  Even better, that something wasn’t dependent on what doctors did or didn’t say or do.   

These small, successive flickers rekindled my battered relationship with hope. I felt as if hope could be resuscitated in spite of so many crashes. 

My pain hasn’t decreased physically as much as it has shifted into my side view mirror at times, as opposed to blocking my windshield (which grieving over losses can do).

What works better for me is to remind myself that no matter how difficult a time I might be having, I’ve survived worse ones.

We also create twisted parallels when we perceive and talk about suffering and hope by comparing how we were (before chronic pain or illness) to now (with them).  Such comparisons are faulty because they’re not apples to apples in time or circumstance.

Seven years in the “setback” stage taught me that if I focused on my level of suffering as it increased– which I call “suffering over my suffering” – it became a costly, self defeating exercise.

It’s tricky the way hope nudges us into a decision point to help us endure.

Instead of dwelling on the suffering of what we can no longer be, have, or do; it teaches us to lean into ways that side step the medical, mental, or emotionally dooming loops that sabotage the very thing we’d like more of – small reasons to still have hope.

Pat Akerberg suffers from trigeminal neuralgia, a rare facial pain disorder. Pat is a member of the TNA Facial Pain Association and serves as a moderator for their online support forum. She is also a supporter of the Trigeminal Neuralgia Research Foundation.

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.

Legalizing Marijuana? Don’t Forget its Medical Use

By Ellen Lenox Smith, Columnist

At least half a dozen states may be joining Colorado and Washington in the full legalization of marijuana. As a medical marijuana patient in Rhode Island, that has never been my battle. I have tried to stay focused on improving medical marijuana laws in Rhode Island and 23 other states, such as expanding the conditions for which it can be prescribed to include chronic pain and other medical issues.

It is mind boggling to me that some states have not yet approved marijuana’s medical use, but seem to be jumping right into legalization, most likely because they see it as a way to generate tax revenue.

We must hold onto the medical programs and be sure they are not mixed into the rules for full legalization. That would be like allowing medication from the pharmacy available to anyone to enjoy for pleasure. This is our medicine.

I have no problem with others having the pleasure of using cannabis socially, but let’s make sure we maintain the integrity of the medical programs.

This is our vision for every state in this country in the near future:

1) Medical marijuana is approved in all states and it includes reciprocity from state to state so we are safe to medicate legally when we travel.

2) Patients qualify when their doctors confirm they have a need and cannabis is no longer limited to specific conditions. There are many less common ones that can be treated effectively with this medication. 

3) Patients have a choice of growing, which is both therapeutic and helpful for those who find strains they are compatible with.

4) Each state offers compassion centers or dispensaries that are strategically placed so all have access within a reasonable distance.

5) Prices at these centers are affordable and on a sliding scale. Many who are afflicted with health issues already have massive medical bills. We do not want to have the mindset of making a large profit off the sale of their medication.

6) When all states are legal, we then conquer the battle of being reimbursed for our medicine from our insurance companies.

7) Allow centers to grow the plants they need to accommodate patients with all of the various strains. 

      8) Allow centers to sell various forms of medical marijuana, including dry product, oils, tinctures, topicals, edibles, etc.

      9) Allow a delivery system for those seriously ill and a gifting program to those financially unable to pay.

     10) All centers grow organically, keeping us safe from pesticides and other chemicals.

     11) People using medical marijuana will have the legal right not be drug tested, discriminated or fired from employment.

As the demand for full legalization continues to spread across the country, please help your state maintain the integrity of its medical program. Medical marijuana is intended to help us with quality of life, not to make a huge profit from. Let those that are using it for recreation be the ones to pay taxes and bring in the revenue for your state.

Let’s keep this medicine affordable for those in need.  For those that do not need it for medical reasons, be glad you are able to use cannabis socially and not have to face issues like us!

Ellen Lenox Smith suffers from 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 or to contact the Smith's, visit their 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.

Lyrica Linked to Birth Defects

By Pat Anson, Editor

A drug widely prescribed to treat fibromyalgia, neuropathy and other chronic pain conditions increases the risk of major birth defects, according to a new study published in Neurology, the medical journal of the American Academy of Neurology.

Women taking pregabalin were six times more likely to have a pregnancy with a major defect than women who were not taking the drug, the study found. The birth defects included heart defects and structural problems with the central nervous system (CNS) or other organs. Birth defects due to chromosomal abnormalities were not included in the results.

Pregabalin is the generic name of Lyrica, which is approved by the FDA to treat diabetic nerve pain, fibromyalgia, epilepsy, post-herpetic neuralgia caused by shingles and spinal cord injury. It is also prescribed “off label” to treat a variety of other conditions. Lyrica is Pfizer’s top selling drug, generates over $5 billion in annual sales, and is currently approved for use in over 130 countries.

The international study involved nearly 700 pregnant women in seven different countries. Four of the 125 women who took pregabalin during pregnancy had children with central nervous system defects, or 3.2 percent. That compares to a birth defect rate of just 0.5% in the 570 women who did not take pregabalin.

Of the women taking pregabalin, 115 were taking it to treat neuropathic pain, 39 were taking it for psychiatric disorders, including depression and anxiety, five were taking it for epilepsy, and one for restless leg syndrome.

Most of the women started taking pregabalin before they became pregnant. All of them stopped taking the drug at an average of six weeks into their pregnancies.

A small number of women also took another anti-seizure drug during their pregnancy. Women in that group had a 6 percent chance of a major birth defect, compared to 2 percent of the women who did not take another anti-seizure medication.

“We can’t draw any definitive conclusions from this study, since many of the women were taking other drugs that could have played a role in the birth defects and because the study was small and the results need to be confirmed with larger studies, but these results do signal that there may be an increased risk for major birth defects after taking pregabalin during the first trimester of pregnancy,” said study author Ursula Winterfeld, PhD, of the Swiss Teratogen Information Service and Lausanne University Hospital in Lausanne, Switzerland.

“Pregabalin should be prescribed for women of child-bearing age only after making sure that the benefits of the drug outweigh the risks and after counseling them about using effective birth control. In cases where women have taken pregabalin during pregnancy, extra fetal monitoring may be warranted.”

A spokesman for Pfizer said the study was small and the findings could have been influenced by other factors.

"As the authors agree, the study has significant limitations and cannot be used to draw definitive conclusions," Steven Danehy said in an email to Pain News Network. "The study was small, did not account for other medical conditions or medications, and the women taking Lyrica had higher rates of smoking and diabetes, all of which can negatively affect pregnancy outcomes."  

Because women are more likely than men to have a chronic pain condition such as fibromyalgia, they are the biggest consumers of Lyrica.

The FDA warning label for Lyrica does not specifically warn pregnant women not to take the drug. But it does caution them to consult with a doctor if they are pregnant or plan to become pregnant.

“It is not known if Lyrica will harm your unborn baby. You and your healthcare provider will have to decide if you should take Lyrica while you are pregnant. If you become pregnant while taking Lyrica, talk to your healthcare provider about registering with the North American Antiepileptic Drug Pregnancy Registry,” the label says.

The label also cautions men to see a doctor if they plan to father a child while taking Lyrica. 

“Animal studies have shown that pregabalin, the active ingredient in Lyrica, made male animals less fertile and caused sperm to change. Also, in animal studies, birth defects were seen in the offspring (babies) of male animals treated with pregabalin. It is not known if these problems can happen in people who take Lyrica,” the warning label states.

Green Light Reduces Migraine Headache

By Pat Anson, Editor

Many people who suffer from migraines will tell you that bright light can trigger a horrible headache.

But researchers at Beth Israel Deaconess Medical Center in Boston have found that a narrow band of green light can significantly reduce light sensitivity – known as photophobia – and reduce headache severity in migraine sufferers.

"Although photophobia is not usually as incapacitating as headache pain itself, the inability to endure light can be disabling," said Rami Burstein, PhD, Vice Chair of Research in the Department of Anesthesia, Critical Care and Pain Medicine and Academic Director of the Comprehensive Headache Center at Beth Israel Deaconess, as well as the John Hedley-Whyte Professor of Anaesthesia at Harvard Medical School.

"More than 80 percent of migraine attacks are associated with and exacerbated by light sensitivity, leading many migraine sufferers to seek the comfort of darkness and isolate themselves from work, family and everyday activities."

Five years ago, Burstein and his colleagues made the surprising discovery that blue light hurts migraine patients who are blind. The finding prompted research that found photophobia could be alleviated by blocking blue light. However, because that study involved only blind patients, who cannot detect all colors of light, researchers devised a way to study the effects of different colors of light on headache in patients who are not visually impaired.

In the first study of its kind, published in the journal Brain, Burstein and colleagues found that a narrow band of green light worsens migraine significantly less than other colors of light, and that low intensities of green light can even reduce headache pain.

The researchers asked 43 patients experiencing acute migraine attacks to report any change in headache when exposed to different intensities of blue, green, amber and red light.

As the intensity of the light increased every 30 seconds, patients were asked if their headache intensified. Nearly 80 percent of patients said their migraines got worse when exposed to white, blue or amber light, while green light was found to reduce pain in 20 percent of patients.

Researchers then measured the magnitude of the electrical signals generated by the retina (in the eye) and the cortex (in the brain) of patients in response to each color of light. They found that blue and red lights generated the largest signals in both the retina and the cortex, and that green light generated the smallest signals.

Researchers also used laboratory rats to study neurons in the thalamus, an area of the brain that transmits information about light from the eye to the cortex. These neurons were found to be most responsive to blue light and least responsive to green light, explaining why the migraine brain responds favorably to green light.

"These findings offer real hope to patients with migraines and a promising path forward for researchers and clinicians," said Burstein.

Burstein is now working to develop a more affordable light bulb that emits "pure" (narrow band wavelength) green light at low intensity, as well as affordable sunglasses that block all but this narrow band of pure green light. Currently, the cost of one such light bulb is prohibitively high ($360 to $500, according to this research) and the technology to block all but pure green light in sunglasses is also very costly.

Light therapy – also known as infrared or laser therapy – is also being used to treat pain from aching joints, muscles and low back pain. Red and green light are also used as a treatment for skin disorders such as acne, aging spots and wrinkles. The theory is that light therapy increases circulation and stimulates the growth of collagen in skin.

About a billion people worldwide suffer from headaches caused by migraines, which affect three times as many women as men.

Migraine affects about 36 million adults in the United States, according to the American Migraine Foundation. In addition to headache pain and nausea, migraine can cause vomiting, blurriness or visual disturbances, and sensitivity to light and sound. About half of people living with migraine are undiagnosed.

What Arachnoiditis Did to Me

By Shane Schwartz, Guest Columnist

I injured my back lifting tiles and went through every possible treatment, including physical therapy, steroid injections and a host of other things before finally deciding to have surgery. I couldn't take the pain any longer.

After speaking with the neurosurgeon, I elected to proceed and had a 360 degree 2 level fusion at L4-S1 with plating and decompression. It was quite an extensive surgery lasting over 9 hours. I did okay for the first 6 months and was placed in physical therapy as part of my rehabilitation -- supposedly to get back to 80% of my normal health.

Well it fell apart shortly after that and I underwent another round of epidural injections in hopes of some sort of relief, but to no avail.

After being kicked to the curb by my neurosurgeon and being told of all kinds of different diagnoses which made absolutely no sense, I went to the Oklahoma University Medical Center because I was told I had a brain tumor by the crooked neurosurgeon’s partners in crime.

Upon arriving at the hospital, I said I needed a brain scan because of what the doctors who did my spine surgery had told me. The doctors at OU pretty much laughed after a physical exam of me. They scheduled me for spinal imaging and that is the first time I ever heard of Arachnoiditis. My father is a nurse anesthetist and he was very concerned when he heard that word being used.

Suddenly everything started fitting into place as to what was happening to my body. Look at the before and after pictures of me. My heart goes out to everyone dealing with this.

I sent my MRIs scans to a very qualified physician who specializes in this disorder and went to visit with him after reviewing my scans. He confirmed it was Adhesive Arachnoiditis.

Folks, this disorder is so much more than a spine issue. It robs me of everyday life as I once knew it.

I'm 41 years old, but feel as if I'm 90. No disrespect to the elders, please don't misunderstand me, but it causes unrelenting pain throughout my entire body.

BEFORE AND AFTER PHOTOS OF SHANE SCHWARTZ

I just want to be able to enjoy life with my children again. I have a 17 and 8 year old who have basically had their father stolen from them.

This disorder needs to be on the front burner of every doctor doing any kind of spine surgery, as I was NEVER warned of anything even remotely close to this as a side effect.  I question almost daily if tomorrow is even worth it. This is no way to live.

The spine surgeons keep getting richer at the public expense and when something of this nature occurs, you are like a tin can and kicked to the next doctor, who may or may not take you. From my experience no doctor wants to deal with Arachnoiditis once they hear the word. WHY?!?!? I am a human being!!!! Not a tin can that can just be kicked around and down the road because these doctors don’t want to deal with it or own it!!!

It's so very frustrating, depressing, and my anxiety is through the roof. It's just HORRIBLE!!!

God bless anyone and everyone who has this disorder and has to deal with it on a daily basis. I am open to conversing with others in my shoes. I love and wish us all the best and thanks for reading.

Shane Schwartz lives in Oklahoma.

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 represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Study: Some Brains ‘Hardwired’ for Chronic Pain

By Pat Anson, Editor

Why do some people develop chronic pain from an injury or illness, while others do not?

The answer to that question may really be all in our heads.

A groundbreaking study by scientists at Northwestern University and the Rehabilitation Institute of Chicago (RIC) found that some people are genetically predisposed to chronic pain because of brain “abnormalities” that raise their risk of developing chronic pain. The findings challenge long-standing views on the science of pain, which emphasize treating pain at the site of the initial injury.

"While simple, the logic of addressing problems at the site of an injury to remove pain has resulted in only limited success," said senior study author Marwan Baliki, PhD, a research scientist at RIC and an assistant professor of physical medicine and rehabilitation at Northwestern University Feinberg School of Medicine.

"The central processes of chronic pain have largely been ignored, so our research team set out to better understand the brain's role."

Baliki and his colleagues conducted the first longitudinal brain imaging study, which tracked 159 patients for three years following an acute back injury, along with 29 healthy control subjects.  

MRI brain scans were conducted on all of the participants five times during the course of the study.

The researchers found that patients who developed chronic pain from their back injury had a smaller hippocampus and amygdala compared to those who recovered from the injury and the healthy control subjects.

The hippocampus is the primary brain region involved in memory formation and retention, while the amygdala is involved in the processing of emotions and fear. In addition to size variations, these brain regions also showed differences in connections to the rest of the brain, particularly to the frontal cortex, an area involved in judgment.

Together, the researchers estimate that these brain differences accounted for about 60% of the chronic pain felt by participants.

Most importantly, the study also revealed that the volumes of the amygdala and hippocampus did not change over the course of the study, suggesting that those who developed chronic pain were genetically predisposed to it.  

"Here we establish that the gross anatomical properties of the corticolimbic brain, not the initial back pain, determine most of the risk for developing chronic pain," said first author Etienne Vachon-Presseau, PhD, a visiting postdoctoral fellow in physiology at Feinberg.

“As the anatomical risk factors were stable across 3 years, they were presumably hardwired and present prior to the event initiating back pain. These results pave the way for the development of novel and distinct approaches to prevention and treatment of chronic pain.”

The Northwestern and RIC study will be published in the June edition of the journal Brain.

The Hidden Dangers of Self-Medicating with OTC Drugs

By James Campbell, MD, Guest Columnist

The Centers for Disease Control and Prevention (CDC) recently unveiled guidelines for primary care physicians on the use of opioids for chronic pain. Not surprisingly, the guidelines urge physicians to first try non-pharmacologic and non-opioid treatments before resorting to opioid therapy.

If you’re one of the millions of Americans living with pain on a daily basis, it’s likely you’re not a stranger to over-the-counter (OTC), non-prescription pain medications such as naproxen (brand name Aleve), ibuprofen (Advil and Motrin), aspirin and acetaminophen (Tylenol).

In fact, most of my patients with chronic pain began their quest for relief with a cocktail of OTC pain relievers, muscle relaxants and even alcohol, before seeking professional help and eventually graduating to prescription treatments such as opioids, anti-depressants and anticonvulsants.

While OTC pain medications are generally safe when taken at their recommended doses, it’s all too common for patients to unknowingly put themselves at risk of a fatal accidental overdose or serious drug-drug interactions by mixing OTC pain medications or taking them in combination with prescription treatments for pain or other common health conditions.

Given the sheer magnitude of serious adverse events and fatalities associated with opioids, the hidden, yet preventable dangers of the pain medications on your pharmacy shelves are not often discussed.

Let’s take one of the most common OTC pain relievers: acetaminophen. When used as directed within the advised dosing guidelines, acetaminophen is safe and effective. However, if a person takes more than one medication that contains acetaminophen and exceeds the maximum recommended dose, they may be at risk of serious liver damage.

This happens so often that acetaminophen overdose is the leading cause of calls to poison control centers in the United States -- more than 100,000 instances per year – and are responsible for more than 56,000 emergency room visits.

In fact, in 2011, in an effort to reduce the risk of severe liver injury from acetaminophen overdose, the Food and Drug Administration (FDA) asked drug manufacturers to limit the strength of acetaminophen in prescription medications, including combination acetaminophen and opioid products, to no more than 325 mg per tablet, capsule or other dosage unit.

Then in 2014, the FDA recommended that health care professionals discontinue prescribing and dispensing prescription combination products that contain more than 325 mg of acetaminophen.

While the FDA’s efforts may help curb accidental overdose related to prescription medications that contain acetaminophen (Tylenol with codeine, for example), it does little to address the risks of OTC acetaminophen or other OTC pain medications such as ibuprofen, a type of non-steroidal anti-inflammatory drug (NSAID), which can cause gastrointestinal bleeding and injury, and cardiovascular side effects when taken on a chronic basis.

Drug Interactions

In addition to the risk of overdose, people taking multiple OTC and prescription medications for pain and other conditions are also at risk of serious drug-drug interactions. Simply put, any “drug” – whether it be a medicine, vitamin, supplement or even alcohol – that enters your body and alters your natural internal chemistry has the potential to interact or alter the intended effect or unintended side effect of other medications.

Even though most medications are accompanied by warnings about combining them with other drugs, most vitamins and supplements are not -- so, unless you’re a licensed medical professional, it’s virtually impossible to recognize the potential for drug-drug interactions.

If you’re using OTC medications, whether alone or with prescription medications, to cope with pain on a daily basis, here are three precautionary steps you can take to safeguard yourself against the risk of accidental overdose or drug-drug interactions.

1) Recognize that ALL medications, whether OTC or prescription, can cause harm if used improperly, and the fact that some medications are available without a prescription does not mean they are inherently safe. Read the labels that come with your medications. Tylenol, Advil and Vicodin are household names, so it can be easy to overlook their “generic” names (or the active ingredient in each).

For example, the generic name for Tylenol is acetaminophen, while that of Vicodin is acetaminophen hydrocodone. Without close examination of either label, a person taking Vicodin and Tylenol together could be inadvertently exceeding the recommended dosage of acetaminophen.

2) Consult a medical professional before you take more than one medication on a daily basis. If your chronic pain is being treated by a physician, be sure to tell them (even if it’s on your medical history) about any OTC or prescription medications you are currently taking. This includes vitamins and other supplements that may seem harmless, but could interact with your pain medications.

3) If you are independently treating your chronic pain, make a list of all the medications, vitamins and supplements you take on a regular basis and share them with your local pharmacist. Pharmacists can identify potential drug-drug interactions like taking acetaminophen and ibuprofen on a long-term basis, which can result in an increased risk of developing kidney problems.

The American Chronic Pain Association also recommends using the same pharmacy for all your prescriptions, so that the pharmacist can screen health information and current medications to avoid the pitfalls of overdose and drug interactions.

As a neurosurgeon with a special interest in pain for over 30 years, I’m empathetic to the daily struggle that patients face and their desperate quest for relief, seeking anything and everything that can simply make the pain stop.

For the patients who are fighting this seemingly endless battle with pain without the help of a medical professional, I hope I’ve provided some useful information and practical advice to help avoid serious risks associated with self-medicating. However, people living with moderate to severe chronic pain may benefit from a consultation with a licensed pain management specialist, who can help guide you toward steps that will help reduce your pain. 

James Campbell, MD, has spent the last 30 years pioneering efforts to improve the diagnosis and treatment of patients with chronic pain. 

Dr. Campbell is professor emeritus of Neurosurgery at Johns Hopkins University School of Medicine and is the founder of the Johns Hopkins Blaustein Pain Treatment Center - one of the largest pain research centers in the U.S. He is also a former president of the American Pain Society. 

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

Why Aren’t Pain Patients Protesting?

By Mary Maston, Guest Columnist

I’ve become somewhat disenchanted with my role as a pain patient advocate. When I started out in 2011, I was armed with a strong opinion, an admittedly big mouth, and I suppose I had grand illusions of working with others to effect positive change.

I wanted to help right the wrongs being inflicted on people who depend on pain medication -- not because they want to -- but because of some catastrophic life event that forced them to choose between taking medication to be able to function in their lives or not being able to function at all.

I’ve been there myself. I’m still there and always will be because my kidney diseases are never going away.

Throughout this journey, I’ve had the opportunity to converse with and learn from some highly educated and well versed people in the pain community. Watching them do what they do to help others is nothing short of awe inspiring, and it has helped to keep me going. For that, I can never thank them enough.

The one thing that’s been drilled into my head all these years and has been mentioned in just about every article I’ve ever read about chronic pain is the number 100,000,000.

ONE HUNDRED MILLION. That’s supposedly how many chronic pain patients there are in the United States. If you believe that statistic, we make up nearly a third of the population of the entire country.

So my question is this: WHERE THE HELL ARE YOU??

I read most of the articles that are published on pain and/or pain meds, and all of the comments on both the articles and on Facebook, if that’s where the article is posted. For the most part, I see the same names commenting over and over. Kudos to those who stay persistent, but where are the rest of you?

ONE HUNDRED MILLION and the author is really lucky if he/she gets a couple hundred comments. Usually 30-40 is the going rate. Sometimes it’s even less than that. You can’t blame those who don’t have an internet connection either. Just about everyone has a phone or tablet these days and even elderly people are online in record numbers.

Maybe it wouldn’t have made much of a difference, but maybe it would have if the CDC opioid guidelines had gotten more of a response than they did. We’ll never know now. Where were you when the CDC was taking public comments? I can’t remember the final number, but I know for sure that they received less than 5,000 comments, and many of those comments were people who were in favor of the guidelines – people working against you and the advocates that are trying to go to bat for you.

I personally shared the CDC comment link repeatedly in my Facebook group and practically begged people to write a comment and share their experiences. From talking with other administrators of other groups in the past, I’m sure they all did too. Only a small handful from my group wrote a comment, and by small handful, I mean less than 20.

To say I was disappointed with the final number of comments from patients is an understatement, but what’s done is done and now we all have to live with the outcome.

ONE HUNDRED MILLION - WHERE ARE YOU?

There’s another petition to the White House that’s been active since May 3, asking all of the government entities, including the President, to take pain patients and what we are going through into account by revising the CDC guidelines. It’s been online for 14 days now and only has about 600 signatures. It needs 100,000 to reach the White House.

ONE HUNDRED MILLION - WHERE ARE YOU?

The bottom line is this: We as advocates are doing the best we can and are trying to help you, but we can’t do it by ourselves. Make no mistake, we are rapidly losing this battle and in the end, you are the ones that are going to lose big. Venting in closed Facebook groups is great if it makes you feel better, but complaining in a closed group about not getting your meds to people who can do nothing about it does absolutely NOTHING to contribute to solving the problem. Neither does posting comments on Facebook. You have to go beyond that.

When we use that number, 100 MILLION, and then something big comes along like the CDC guidelines or petitions to the White House and you all don’t step up, it makes us look like we’re just pulling that number out of our rear ends -- like we’re lying.

What are we fighting for if we can’t produce the numbers to back it up? Just my opinion, but if you feel you’ve been wronged because you can’t get the meds you need, I shouldn’t have to beg you to help me fight for you.

I may be mistaken, but I get the impression more and more that other advocates are starting to feel this way as well. How can you help people that aren’t willing to do anything to help themselves? The answer is simple. You can’t.

We know you’re out there and we know what you’re going through; you write to us and tell us. Why won’t you take it further? We only have so many tools we can use, and it’s only going to get worse if you aren’t willing to lend your voices and your signatures to the things we are trying to use to fight for you.

ONE HUNDRED MILLION – that’s a huge number. Imagine what we could do if we all stood united and took a stance. That number of voices is hard to ignore. SO WHERE ARE YOU?  

Mary Maston suffers from a rare congenital kidney disease called Medullary Sponge Kidney (MSK), along with Renal Tubular Acidosis (RTA) and chronic cystitis. Mary is an advocate for MSK and other chronic pain patients, and helps administer a Facebook support group for MSK patients.

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

Doctors Not Advising Parents to Dispose of Pain Meds

By Pat Anson, Editor

Keeping prescription opioids away from children may seem like a no-brainer, but a surprising number of parents fail to do that. And their doctors are part of the problem

Nearly half of parents whose child had opioid pain medication leftover from a surgery or illness say they kept the painkillers at home, according to a report by the C.S. Mott Children's Hospital National Poll on Children's Health. In many cases, an excess amount of opioids was prescribed and doctors did not advise parents to dispose of the leftover medication.

"We found that the amount of pain medication prescribed for children is frequently greater than the amount used, and too few parents recall clear direction from their provider about what to do with leftover medication," says Matthew Davis, MD, director of the poll and professor of pediatrics and internal medicine at the University of Michigan's C.S. Mott Children's Hospital.

"This is a missed opportunity to prevent prescription drug misuse among children. Many parents simply keep extra pain pills in their home. Those leftover pills represent easy access to narcotics for teens and their friends."

The survey results are based on a poll of nearly 1,200 parents with at least one child aged 5 to 17.

Nearly a third of the parents (29%) said their child had been prescribed at least one pain medication in the last five years. Most prescriptions (60%) were for opioids such as oxycodone and hydrocodone, while only 8% were for non-opioid pain relievers. Nearly a third of the parents could not recall the type of medication their child was given and half said they had pain medication leftover.

Most parents said their child’s healthcare providers discussed how often to take the medication (84%), when to cut down (64%) and possible side effects (61%). But only a third (33%) reported that the doctor discussed what to do with leftover medication.

“The majority of parents did not recall getting direction from their child’s provider on what to do with leftover pain medication; without guidance, many parents simply kept the extra pain pills in the home,” the report said.

“This raises a fundamental question about how providers approach the task of prescribing pain medication to children: are they prescribing ‘just enough’ medication for a standard recovery, or additional doses ‘just in case’ there is prolonged pain? Providers should make careful decisions regarding the amount of narcotic pain medication prescribed to children, and parents should feel comfortable asking questions about the amount of medication prescribed.”

What did the parents do with leftover pain medication? Nearly half (47%) kept the drugs at home, while 30% disposed of it in the trash or toilet.

Only 8% returned it to the doctor or pharmacy, 6% used it for other family members and 9% didn't remember what they did with them.

Twice as many parents (56%) with no guidance from their provider kept leftover pain pills at home, compared to parents whose providers discussed what to do with them (26%).

“Parents need clearer guidance on all aspects of administering prescription medications for their children. This is particularly true for pain medication,” the report found.

Don’t Complain About the Grilled Cheese

By Barby Ingle, Columnist

2016 is turning into the year of the patient advocate. It’s been great to see pain sufferers who’ve been quietly supporting our advocacy work for years finally start speaking up for themselves. I think the CDC opioid guidelines and having so many doctors change their practices have caused this surge.

We need to be heard, but I am also seeing people still trying to convince the CDC that we are suffering and that we are not drug seekers. It reminds me of the quote by Dale Carnegie: “Those convinced against their will are of the same opinion still.”

Being in advocacy meetings and testifying at the federal and state level on a multitude of pain challenges and policies, I have learned that there is a better way to approach this. I have gone to legislative meetings where minds were made up before we even testified. They gave us our 2 to 5 minutes to speak and then went ahead with the decision they were set to go with before the meeting started.

Having done over 300 media interviews, I can also say even in a live interview this is what you can expect. The reporters and producers have a set script and set agenda before you arrive. They have the questions and graphics set in advance. If you think you will be able to tell your side and convince someone to change their mind in a public setting, think again.  

Here is a parallel example. If you walk into a sandwich shop owned by a grilled cheese sandwich maker and the shop is called Sammy’s Best Grilled Cheese, don’t expect to find a beef brisket dinner on the menu.

Yelling at the owner (who advertised properly what you will get there) or complaining on social media will only bring Sammy’s free advertising. They are not going to change their menu. They know that will not make everyone happy, but it is their shop.

You want a beef brisket dinner? Find a different restaurant or make your own. And if you make your own, don’t expect the grilled cheese fans to come.

In the case of TV, after doing a few shows myself, I know the producers are not looking to see if people liked the show or not, they are looking to see if people react. Yelling or writing mean letters, emails, and social media posts is only giving them ratings and marketing for free. It promotes their agenda and message even more. It’s exactly what they want.

They already know that there are more chronic pain patients than addicts, that patients have limited access to proper and timely care, and that the sponsors of the program are paying them. And they will cut you off the more you fight. 

How can we be heard? When it comes to legislation, we need to work to get into committee meetings before the big public hearings. Legislators need guidance before the hearings happen. Share social media posts, call the legislators’ offices and send letters before the hearing. Show up at press conferences for the bills that we support.

It is very difficult to change a legislator’s mind at a public hearing. We have to get them before the hearings. Once we get on the inside, then we can get placed on advisory committees and work strategically towards making changes. This is something that will take time to do, but it is the most effective way to make meaningful, lasting change.

When it comes to media, we need to place our own stories and not react to every story or segment that has already aired. They can’t go back, it is done and it is out there. Commenting on them is okay, but it is not going to get our voices heard for meaningful change. Who are you trying to convince at that point? If the show or story doesn’t promote what you want, why keep pushing it through social media?

The person or media group that put it out is happy to see the reaction to their piece. Most readers do not even go through and read what you write, and others will see 207 comments and skip through them. Why not give them no comments and no attention if it goes against what you believe? Instead write your own blog, media article, or TV station about airing a segment on chronic pain and the area of interest you want covered, the way you want it covered.  

If you want a beef brisket, go to where you can get one, don’t spend time going to Sammy’s, where you know it is not sold. Going after the chef and demanding he offer a different choice is not going to happen. It has only given us Soup Nazis like the CDC: “No soup for you!”

We need to create our own recipes. Give them well-thought answers with research to back it up. We know that the studies the CDC used were poorly done, so maybe start with presenting better research. There isn’t any? Then we need to create our own research studies, surveys and needs assessments.

The same concept can be applied to finding the right healthcare provider. If you read their website and they don’t offer the treatment you would like to try, find one who does. You will have a better chance of being heard, bettering the pain community, and making a difference that can be lasting and effective. 

The solution is going to take time. It will mean electing people to public office who understand what we are going through, who are pain patients themselves or a caregiver who gets it. It is going to take patients voting and speaking out at the right place and time. Speaking up after a decision is made is not helping. It is making us look like seekers and addicts.

Barby Ingle suffers from Reflex Sympathetic Dystrophy (RSD) 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.

Pain Companion: Losing Your Smarts to Pain

By Sarah Anne Shockley, Columnist

In my last column, When Pain Hijacks Your Brain, we looked at a couple of ways that living with chronic pain affects cognitive ability; specifically, blank spaces and brain freeze.

This month we’ll look at memory loss and overall loss of brain power, and share some tips I’ve learned about mitigating their impact.

What to Do About Memory Loss            

Can’t remember what you did yesterday or even two minutes ago? Short-term memory loss is common for people in pain. I believe it is because the body and brain are simply overloaded having to deal with compromised health, and the overall stress and exhaustion that pain creates in the system.                   

Sure, forgetting things happens to everyone. But for those of us living with chronic pain, it seems to happen more often and it takes longer for our brains to come back online.                 

Write yourself notes and stick them everywhere. Write the note immediately or you will forget not only what was supposed to go on the note, but that you were writing a note at all. (No kidding)                               

I keep the smallest size of Post-it Notes in my car and stick notes on the dashboard so I don’t forget where I’m supposed to be later or what I need to do when I get home. I leave these little pads all over the house with pens nearby.                   

I have Post-its all over my computer, my desk and my kitchen, and I just throw them out when I’m finished with them. I have gotten into the habit of writing EVERYTHING down the minute it comes into my head and sticking it immediately where I will find it later.                   

What about the problem of walking over to the Post-it pad and forgetting what you’re supposed to write there on the way? (You’re only laughing because something similar has happened to you, I’m sure!)

Go back to the physical spot where you were when the thought came to you and put yourself in the exact same position and wait a moment. Somehow, the body and brain sort of coordinate in resetting yourself back in time, and then your brain often sends you the same message again.                   

Oh, and don’t forget to have the Post-its and pen already in hand.        

What to Do About Loss of Brain Power                   

My brain in pain can barely make sense of how to balance my bank accounts. Truly. It scares me to look at a row of numbers. Not because numbers are scary to me or I’m terrible at math – I aced all my graduate finance and economics courses – it scares me because, when in pain, I can’t make heads or tails of them. It’s like looking at Egyptian hieroglyphs.                   

It is incredibly disconcerting to lose your smarts to pain. Focusing on anything becomes nearly impossible. I remember having a vocational aptitude test done after I was injured and not being able to read a high school level paragraph or answer the questions appropriately.

I sat there and reread the same three-sentence paragraph about four times and simply couldn’t make any sense of what they were asking me to do with it. If you’ve had an experience like this, you know how frightening it can be to realize you just don’t have access to your normal cognitive functioning. It’s like someone turned the lights off upstairs.

Your brain in pain is simply not firing on all cylinders or most of its energy is going to dealing with the pain you’re in and healing your body. There just isn’t much brainpower available to you for normal cognitive processes.                   

This was true for me during the most acute part of my pain and it went on for quite some time. Thankfully, I have been able to recover much more access to my cognitive processes since then. So, please know that if you are going through the worst of this kind of side effect right now, it can get better as you move out of the most acute pain. You can get your brain back.             

For the purpose of regaining a modicum of brainpower, and for using some of my unused mental energy, I started doing extremely easy Sudoku puzzles, a popular Japanese number game.                   

At first, doing Sudoku worked like a sleeping pill because I quickly wore my brain out just trying to make sense of the very easiest puzzles and basically knocked myself out. I kept at it as a nightly sleep aid and eventually I was able to complete the easy puzzles. I usually had to erase what I’d already filled in and start over about 3 or 4 times in order to finish one small puzzle.                

I found that, in addition to acting like a benign sleeping pill, Sudoku helped bring my brain back online over time. I was able to progress from Easy to Medium to Hard. (I have not graduated to the Evil level yet.)

This tells me that even if the brain is hijacked by pain, it is possible to bring it back by starting small. Simple crossword puzzles can work too, but initially I found that even these were too demanding and frustrating. I could come up with a number from 1 to 10 more easily than a specific word.      

There are other ways to bring the brain back online as well: Scrabble, Monopoly, cribbage, backgammon or any other game requiring some counting, but are not overwhelmingly complex.

Jigsaw puzzles, origami, scrapbooks, photo collections; anything that requires organizing visually can also be useful. If you have enough mental energy for it, small amounts of foreign language study can also do the trick. Many public library systems have easy and free courses you can use online.

These ideas seem really simple, I know, but that’s exactly where to start. Really easy and really simple.

Sarah Anne Shockley suffers from Thoracic Outlet Syndrome, a painful condition that affects the nerves and arteries in the upper chest. Sarah is the author of The Pain Companion: Everyday Wisdom for Living With and Moving Beyond Chronic Pain.

 Sarah also writes for her blog, The Pain Companion.

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.

Does Excedrin Reduce Empathy?

By Pat Anson, Editor

A popular over-the-counter pain reliever may do more than just relieve minor aches and pains. Ohio State researchers say acetaminophen -- the active ingredient in Excedrin and hundreds of other pain medications -- can also make us feel less empathy for the physical and emotional pain of others.

"We don't know why acetaminophen is having these effects, but it is concerning," says Baldwin Way, an assistant professor of psychology at Ohio State’s Wexner Medical Center's Institute for Behavioral Medicine Research.

“Empathy is important. If you are having an argument with your spouse and you just took acetaminophen, this research suggests you might be less understanding of what you did to hurt your spouse's feelings."

Acetaminophen -- also known as paracetamol – is the world’s most widely used over-the-counter pain reliever. The study findings were published in the journal Social Cognitive and Affective Neuroscience.

Way and his colleagues divided 80 college students into two groups, giving half of them a liquid containing 1,000 mg of acetaminophen, while the other half drank a placebo solution that contained no drug. The students didn't know which group they were in.

After waiting an hour for the drug to take effect, the students read eight short scenarios in which someone suffered some sort of physical or emotional pain. For example, one scenario was about a person who suffered a knife wound and another was about a person whose father died. Participants were then asked to rate the pain of each person on a scale ranging from 1 (no pain at all) to 5 (worst possible pain).

Students who took acetaminophen rated the pain of the people in the scenarios to be less severe than those who took the placebo.

"These findings suggest other people's pain doesn't seem as big of a deal to you when you've taken acetaminophen," said Dominik Mischkowski, co-author of the study and a former PhD. student at Ohio State, who is now at the National Institutes of Health.

In a second experiment, students met and socialized with each other briefly. Each participant then watched, alone, an online game that purportedly involved three of the people they just met. In the game, two of the students excluded the third person from the activity.

Participants were then asked to rate how much pain and hurt feelings the students in the game felt, including the one who was excluded.

Results showed that people who took acetaminophen rated the pain and hurt feelings of the excluded student as less severe than the participants who took the placebo.

"Participants had the chance to empathize with the suffering of someone who they thought was going through a socially painful experience," Way said. "Still, those who took acetaminophen showed a reduction in empathy. They weren't as concerned about the rejected person's hurt feelings.

“Because empathy regulates pro-social and anti-social behavior, these drug-induced reductions in empathy raise concerns about the broader social side effects of acetaminophen, which is taken by almost a quarter of U.S. adults each week.”

An earlier Ohio State study found that acetaminophen also dulls emotions.

The pain reliever has long been associated with liver injury and allergic reactions such as skin rash. In the U.S. over 50,000 emergency room visits each year are caused by acetaminophen, including 25,000 hospitalizations and 450 deaths.

Iowa Pain Patient Ends Hunger Strike

By Pat Anson, Editor

All Ryan Lankford wanted was a new doctor and a cheeseburger.

Now that he has the former, he can chow down on the latter.

The 40-year old Iowa man ended his week-long hunger strike Thursday after finally finding a doctor willing to treat his chronic pain.

“I have some good news.  I have a primary care physician!” Lankford said in a message to supporters.

Lankford, who was “fired” by his doctor at UnityPoint Health last month for reasons that were not made clear, suffers from chronic pain in his right arm, stemming from an attack of flesh eating bacteria in 2009. Surgeons were able to save the arm after removing infected tissue, but neuropathic pain in the scar tissue never went away.

After losing his doctor, Lankford was forced to take “dangerous amounts of Tylenol” instead of tramadol, a weaker acting prescription opioid that helped take the edge off his pain.

He decided to go on a hunger strike last week, as a form of protest not only against his own situation, but because thousands of chronic pain patients face similar problems finding doctors.

“I’ve been getting messages from just all corners of the United States. It’s been unreal. I didn’t know that this many people would be with me on this,” Lankford said.

“A lot of people were thanking me that somebody has the guts to do something like this. And there were a lot of them, just a heartbreaking amount of people, that have also been thrown out of pain management practices and dismissed from primary care practices. And denied medications by pharmacies.”

Lankford only drank water during the hunger strike and lost 15 pounds. Going without food sapped his energy and he was sleeping 12 hours a day, but he wasn’t as hungry as he expected.

“After about four or five days, you don’t really notice that anymore. The fatigue gets to be the biggest trick,” Lankford told Pain News Network.

Despite his exhaustion, Lankford kept looking for a new doctor.

RYAN LANKFORD

“I was making some calls around and I finally found a primary care physician that was willing to at least talk to me. Instead of the usual, ‘We don’t take chronic pain patients,’ and then click,” said Lankford

All it took was one visit with the new doctor, who didn’t even know Lankford was on a hunger strike.

“He asked me what I was on, and when I told him tramadol and gabapentin, his response was ‘That's it?! For THAT?!’ He started my meds back up straight away,” said Lankford.

While the notion of being unable to find a doctor might seem strange to healthy people, it’s become a common occurrence for pain sufferers. Many doctors are afraid to prescribe opioid painkillers, fearing oversight by the DEA or even prosecution.

Finding a pain management specialist has been particularly difficult in Iowa, according to Lankford, ever since a Des Moines physician was indicted for involuntary manslaughter for overprescribing opioids in 2012. Dr. Daniel Baldi was later found not guilty by a jury, but the case had a chilling effect on opioid prescribers.

Local media seemed uninterested in Lankford’s hunger strike. Only WHO-TV, the NBC affiliate in Des Moines, ran a story, which you can watch by clicking here.

“WHO was the only one, and they reached out pretty fast,” said Lankford, who is grateful for the attention his hunger strike did get, especially from pain patients.

“Although today marks the end of my hunger strike, don't think for a second that I'll EVER stop speaking up for chronic pain patients and the injustices we face, and don't ever think I would ever forget about all of the great people I have met in the last week or so,” Lankford said in a note on his Facebook page, called “Ryan’s Hunger Strike for Chronic Pain.”

“You guys are all rock stars and stronger than anyone can ever know. I'm thinking I will leave this page up as a place to discuss pain issues with like-minded people because frankly, many people on my personal FB just don't ‘get it,’ nor would I expect them to.”

CNN Gets It Wrong About Pain Patients

By Sarah Daniels, Guest Columnist

You may have seen last night’s CNN town hall meeting on “Prescription Addiction: Made in the USA.”

I couldn’t believe it when Dr. Drew Pinsky said that real compliant pain patients are “a very tiny minority” of prescription opioid users.

I’m so sick of being grouped in with addicts! Because of all the new CDC regulations, I had to go weeks without my medication after being on high doses of opiates for a long time.

No one would give me my medication. Every pharmacy I went to said they were out. One pharmacy had the medication and was getting ready to fill it when the head pharmacist came over and told me unfortunately they wouldn't be able to give me the script. When I asked why she said they didn’t have it. I explained I was told they did and it was being filled. She said it wasn’t enough.

I asked if my doctor could write a different script for a temporary amount, would they be able to fill it and she just handed it back to me saying, "Like I said, I’m sorry, I can’t help you."

Then I went to a hospital pharmacy that did have the medication and they actually told me they needed to save it for patients who had short-term pain like surgeries for broken ankles. When I asked how someone's broken ankle pain was more important than my chronic pain from my genetic illness they asked me to quiet down and leave. If I didn't they would have to call security.

I was being polite and respectful, because I know as a pain patient you have to be the best advocate you can be, especially with all the stigma attached to opiates. I was also being quiet because I am never loud when discussing my pain meds, as you never know who is listening.

I never fight or argue or really raise my voice with anyone. I am a happy person despite my illness. I am grateful and thankful for each day I wake up and am able to spend with the people I love.

I did not appreciate someone making me out to be a completely different person than I am. It was like they actually felt threatened by me. Give me a break. I was in a wheelchair.

Now I’m not able to find the medication. My doctor wrote me a script for the medication because we have both decided it is the only thing and best thing for me to be on. It gets me out of bed and still, I can’t get it.

Now I am forced to go to a new pain clinic with new meds, where they're making me stop medical marijuana, which is the only thing keeping me from a feeding tube. They are making me come in for a visit once a week and each week I have to get drug tested and get labs drawn which costs $16. The visit itself costs $35.

SARAH DANIELS

They also want me to see a pain psychologist twice a week (who I already saw with my previous pain specialist and was cleared by). God only knows what that costs.

I’m on disability. It barely covers my insurance and yet I have to do all of these things to be compliant. I have to come up with the money for all of these appointments and procedures, find someone who will be able to drive me, as I am disabled and cannot do so on my own, and also be  well enough to even leave my house to make these appointments, just so that I am considered compliant. So that I can take a medication that I’m not sure will even work.

I am just disgusted by what is going on. As pain patients we are left in the dust. Nobody stands up for us. We try to stand up for ourselves, we are pretty strong, but we need bigger louder forces on our side.

Sarah Daniels lives in the Detroit, Michigan area. She suffers from Ehlers Danlos syndrome and gastroparesis. Sarah is a proud supporter of the Ehlers Danlos National Foundation and the Gastroparesis Patient Association for Cures and Treatments (G-Pact).

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 represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Wear, Tear & Care: Media Hysteria and the Opioid Crisis

By J.W. Kain, Columnist

I recently received this email from a family member:

Hi Jen,

I was listening to a thing on pain medication and why prescription meds are so dangerous. They turn the receptors off in the brain and the person forgets to breathe.  That part is a totally separate thing from the pain. Dr. Sanjay Gupta was on talking about it. I think that is a very valid argument about overuse of pain meds.

For example, Prince had very valid issues to use the meds and also lived a very clean life style. If he overused, it goes to follow that someone who doesn't lead a clean lifestyle is in more danger. It's not the meds as much as the brain receptors. The breathing part is scary. So I'm not such an advocate anymore.....unless you can tell me this isn't true and why he would say that.

I love you and don't want anything to happen to you. Xoxoxox

I got mad after reading that, even though I knew she was coming from a place of love and fear. It didn't take long for me to calm down because I saw the bigger issue.

First off? Yes, those claims are true. They are also massively simplified. Heavy pain medications slow down or impair bodily functions. You’ve seen those opioid-induced constipation commercials. That is why only a select few of the chronic pain club gets high-voltage pills for daily life as opposed to post-surgical pain.

Here’s a great quote from WBUR’s interview with Dr. Howard Fields that explains the difference between addiction and dependence, the latter being what most chronic pain patients experience:

“Addiction really gets to the issue of compulsive overuse of a drug so that it becomes the dominant thing in your life. If you are going to your physician once a month and getting your prescription refilled and you are able to lead a normal life by taking a pill maybe three or four times a day, you’re not addicted.

But if you’re spending all your time in the search of a drug, or trying to get the money to buy that drug, or stealing from your friends, or going around in other people’s medicine cabinets looking for opioids, then you’re addicted.”

My view of this increasingly volatile situation is that opioids — which the majority of pain patients use responsibly — cannot be banned without another medical intervention in place. Yet some pain management clinics are declining to prescribe opioids.

So what’s fueling this explosion of insanity?

Welcome to the opioid crisis media extravaganza. There is currently a media blitz surrounding the national opioid crisis:

• A doctor in Buffalo was indicted and closed his practice, leaving thousands of his patients without access to pain medication.
• A California doctor was convicted of murder for writing too many prescriptions (and to be fair, that case was pretty shady).
• The late pop icon Prince died after allegedly overdosing on opioids (though few talk about his chronic and debilitating pain, a condition that is “criminally under-treated”).

Many, many people have overdosed and/or died. That is undeniable and is certainly a problem. But the national reaction has not been the appropriate response. The CDC guidelines that discourage doctors from prescribing opioids gloss over pain patients like we don’t exist and only add to our desperation. A former FDA commissioner even slanders us.

So many patients are doing everything right — exercise, strength training, meditation, deep breathing, over-the-counter pills, medical marijuana, aqua therapy, physical therapy, chiropractic work, Reiki, crystals, and anything they see that makes a vague promise to help.

Pain can drive sufferers to extreme lengths, be it suicide or illegal drugs like heroin. Patients are far more likely to turn to street drugs if there is no access to proper pain medication. Or, you know, when pharmaceutical companies outright lie about the addictive natures of their pills.

It's coming out in the news more steadily now, but the rumblings have been around for several years. The opioid crisis may have started partly because OxyContin, “a chemical cousin of heroin,” had addictive qualities and yet was prescribed with abandon.

Purdue Pharma reps went to doctors and told them their pill wasn’t addictive and lasted for twelve straight hours!

In reality, OxyContin presents a serious end-of-dose failure. This is when a drug says it will quiet pain for twelve hours, but in reality only works for eight. This causes patients to take additional pills or stronger ones, which can lead to overdose and addiction.

A four-hour gap? What did Purdue expect to happen?

The knee-jerk reaction to the crisis is to limit the prescriptions of opioids. What does this do to pain patients? It leaves many of us without access to pain management methods that the majority of us have not abused.

Doctors tell sobbing patients that long-term opioids are usually not the answer. But they are the answer for many patients who literally have no other options beside being bed-bound or dead. Those patients are now in grave danger of being driven to extremes. Like that one awful guy who ruins things for everyone else, there have been patients who’ve abused their health care regimens. Sometimes they can’t even help it, like so many of those OxyContin patients who were lied to.

Many of us have to sign pain contracts before we can even dream of receiving opioid prescriptions. These state that our pills are doled out in certain quantities over a set period of time and that they cannot be replaced, supplanted, or in any way refilled for one month. If we lose them, if they get stolen or if the world explodes, we cannot get more.

We have to get new prescriptions in writing every month. The hard copies have to be delivered to the pharmacy. Our driver's licenses must be presented to the pharmacist so they can track our pill usage. Then, and only then, do we receive our prescriptions.

Tell me: Why on earth would we jeopardize that? Most of us are responsible. We don't overuse what we have. We know we can't, or we’re cut off.

A lot of people say, “You’ll end up hooked." The medication will change our brains to make us need, need, need, and we will do anything to fill that need.

And yet, both I and other patients in my support groups, online chats, and frequent fliers at the doctor’s office time our prescriptions and take them exactly when due. We pair that with every other over-the-counter intervention we can think of, like wearables, pain patches, creams, and braces. We can’t rely on opioids because they might disappear at any moment.

The current approach to battling the opioid crisis lumps pain patients with true addicts, and it skews the statistics. I’m not naïve enough to say that some addicts didn’t start as pain patients. I know some did. But in my entire decade-plus in the medical system, I personally know of only one person who started on pain medication and ended up in rehab. I know a few more online, but I can count them on one hand.

My fundamental message here is that unless the proper education is provided, even your biggest supporters — your family, your friends, your colleagues — might react to the media hysteria without doing research that contextualizes the data. They might read a tweet or a headline and react out of fear. Stories will keep being conflated.

They might even send an email like the one sent to me. They only mean the best, but it adds to the collective national fear that is leaving thousands upon thousands of pain patients without the treatment we need.

Prohibition didn’t work in the 1920s. This version of Prohibition isn’t going to work either. The sooner we as a society come to that conclusion, the better.

J. W. Kain is an attorney in the Greater Boston area who also works as a writer and editor in her spare time.  She has chronic back and neck pain after two car accidents.

You can read more about J.W. 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.