Pain Pandemic: A Patient's Perspective

photo of spinal x-ray

I’m used to being the youngest person in the waiting room. I’ve been struggling with chronic back pain since my first scoliosis spinal fusion at age 13.

And I’m not alone. Across the US, an estimated 100 million people struggle with chronic pain every year (US Institute of Medicine). Chronic pain can reduce quality of life, worsen depressive symptoms and is a risk factor for suicide in those who are depressed (US Department of Health and Human Services). However, the issue of painkiller abuse often overshadows that of chronic pain. Nationwide, approximately 16,000 people die every year from painkiller overdoses (CDC). In response, tough state and national legislation have been enacted to reduce these deaths. But the laws, most targeted at reducing the number of prescriptions written, harm the millions of people suffering with legitimate pain.

My personal struggle intensified when I moved to a new state for graduate school. I had spent years finding the right doctor, and then another year building up my trust in her. Moving forced me to start again, and I knew it would be a struggle. My fears were confirmed. After waiting months to see a specialist, I left my first appointment in tears. After telling me the nasty side effects of my pain medication, the doctor informed me that the trigger point injections, which had drastically reduced the amount of medication I needed to take, were not “cost effective.” As a public health student, I knew exactly what he meant. As a patient, I was horrified. The painkillers could cause me to become infertile. The injections, which came with their own side effects, would not be covered under my insurance. I was given no alternative solution.

Unfortunately, back pain runs in the family. My mother has degenerative disc disease, which means she suffers debilitating pain when the vertebrae in her spine rub together. She has decades of experience with chronic pain and strong opinions on recent opioid laws: “My doctor isn’t treating me based off of my needs, he’s treating me based on legislation. I’ve done the right thing, stayed off disability and been a productive member of society, and still I am being punished. Because of these laws my life satisfaction has decreased.”

Even when my mother’s pain increases her doctor can no longer prescribe medication for it. She explains, “Their mandate is to decrease medication, not increase it. They are no longer treating my pain. They just want to back me off of medication.” With tears in her eyes she notes, “I have to pee in a cup just to prove I’m taking my medication. It’s demoralizing.”

For me and many others who suffer chronic pain, opioids are a last resort. Over 5 years, I attempted to manage my pain through non-steroidal anti-inflammatory drugs (NSAIDS), transcutaneous electrical nerve stimulation (TENS), acupuncture, physical therapy, massage and manual manipulation, dry needling, muscle relaxants, steroidal injections, breathing exercises and mediation, and even a second surgery. By the time I consulted my first pain specialist regarding painkillers, I could already check all of the boxes on the form asking what previous methods I had used to control pain.

I’m also concerned by how legislators blame victims for “painkiller addiction.” When you are actually in pain, opioids don’t cause you to experience the high associated with drug abuse. So while many of those taking medication are physically dependent on their medication, they are not opioid abusers. In fact, a study found that only 1 in 5 people who misuse painkillers access their medication exclusively through a doctor (Archives of Internal Medicine). Yet those in legitimate need face restricted access. Recently the CDC launched a campaign to end the “epidemic” of painkiller abuse. In response, Bob Twillman, PhD, executive director of the American Academy of Pain Management noted, “I think they (the CDC) know what the problems are, but for some reason they don't want to deal with the chronic pain problem. I’ve criticized them for calling the problem of prescription drug overdoses and prescription drug abuse an ‘epidemic’ and taking a much, much bigger problem like chronic pain and not saying anything about it. Because to me, if 16,000 people a year are dying from overdoses is an epidemic, then 100 million people with chronic pain must be a pandemic." (Pain News Network)

As a recent graduate of the Johns Hopkins Bloomberg School of Public Health, I am all too aware that the odds are stacked against those who suffer from pain. It is much easier to quantify the number of deaths due to drug abuse than the quality of life lost due to pain. And I believe the medical and policy communities’ responses were originally an appropriate response to the drug abuse epidemic of the 1980s and 90s. However, it’s worth understanding the other side of the story, because perhaps the pendulum has swung too far in the opposite direction.

We need to protect against drug abuse while also guaranteeing pain relief to those in need. It will require a shift in focus, moving rhetoric away from victim blaming and towards physician and patient empowerment to find the best solutions to cure chronic pain.

Whitney Ewing, MPH, is a Research Assistant for the Center for Public Health and Human Rights in the Department of Epidemiology at the Johns Hopkins Bloomberg School of Public Health.

Editor’s Note: This article is the latest in our monthly series of commentaries highlighting honorable mentions from the 2015 Global Health Untold Stories contest sponsored by Global Health NOW and the Consortium of Universities for Global Health.

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