I Have Chronic Pain and Nothing Works For It. I'm Afraid I'll Be Forgotten In The Opioid Crisis.

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It started as a dull ache right above the base of my spine.

There was no injury, no clear cause — just pain that seemed to come out of nowhere. At the time, I thought it would go away in a few weeks. I didn’t know it would turn into a four-and-a-half-year-and-counting odyssey of experimentation to battle lower back pain that simply refused to retreat.

I tried everything. I dove into twice-a-week physical therapy, daily exercises, regular walking breaks, and meditation. I bought a sit-stand desk. Nothing worked. After several months, if anything, my pain was worse.

This health problem, coincidentally, arose just as a career shift made improving US health policy my focus. After working as a consultant for hospital systems and insurance companies, I accepted a position at the federal agency that runs Medicare and Medicaid. My work focused on designing new ways to pay health care providers to reduce waste and provide higher-quality care. Through my work, I realized just how massive the chronic pain problem is in the US. Defined as any pain lasting longer than three months, chronic pain afflicts more than 50 million Americans each year and has a net economic impact of around $600 billion. Lower back pain alone is the most common cause of disability for Americans under 45.

It struck me that policy and business leaders tackling the problem focused almost entirely on what not to do: avoid excessive imaging studies, avoid invasive treatments and surgeries. Especially avoid opioid painkillers.

Given how common my problem was, I was surprised at how little research and policy was focused on what could be done to fix my pain.

It is certainly true that US clinicians went overboard on opioid prescribing, with horrifying repercussions. I am not going to argue here that opioids are a good treatment option — they appear not to be in most cases — or minimize the devastating effects of opioid addiction.

However, a full response to the opioid epidemic must go beyond reducing opioid use: We need to find ways to reduce pain through better treatment. Policymakers need to put more focus and public dollars toward understanding pain, and patients need to be supported in their pursuit of pain treatments that work.

Chronic pain patients face a bewildering array of treatment options. None of them are broadly effective.
Every day at work, I was learning about innovative programs to improve health outcomes for populations with chronic illnesses such as diabetes and hypertension. There was nothing similar for pain management. Chronic pain seems to be something that few doctors, let alone administrators and policymakers, really understand and know how to treat.

My own journey to find relief made the problem deeply personal. In the absence of clear knowledge and robust treatment options, patients like me are forced to spend a lot of time, energy, and money experimenting with different remedies.

I received an MRI to figure out the source of my back pain — it showed nothing. I am one of the 85 percent of low back pain patients whose pain is “nonspecific”: Doctors cannot pinpoint a cause. Of the many treatments that exist, there is not a definite winner. I tried various medications, several physical therapy regimens, and creams and injections of all sorts. I tried a small patch that sends high-frequency electrical pulses to suppress nerve activity, a treatment that actually helped a bit.

Desperate to exert control in the absence of effective treatments, I funneled my energies into remaking my office workstation. I was lucky to be able to work from home often, a privilege many lack, so I had complete control over my environment. With the help of a specialized vendor, I fashioned a workstation that allowed me to either walk on a treadmill or lie on my side while working on two large side-by-side monitors.

My closet was full of the flotsam of tried-and-failed ergonomic cushions, massaging implements, and foam rollers. I rarely invited people over, dreading I would have to explain my bizarre apartment setup.

Eventually, I took a short trial of opioid painkillers. The pills were moderately effective but made me very tired. That, coupled with a fear of building tolerance, caused me to stop taking them after a few weeks. Fortunately for me, my pain is relatively low-intensity. The trade-off is different than for someone experiencing more pain. The crucial point is that — for me, anyway — painkillers were simply another treatment with a unique set of risks and benefits. My issue was, and remains, managing pain, not managing opioids.

Throughout my adventure of trial and error, coverage decisions from my insurance companies often seem random. Many treatments — for instance massage or prolotherapyinjections, in which a sugar solution is used to stimulate tissue repair — have been denied, on the grounds that the evidence of effectiveness is weak. Yet other treatments with similarly weak evidence behind them, like steroid injections, are covered. I understand the reluctance to pay for a treatment that is unlikely to be effective, but this process of experimentation is all I have. I’m lucky to have the means to spend tens of thousands over the years out of my own pocket. Others don’t have that option.

Our health care system needs to invest in solutions for chronic pain
On my quest to figure out why there seem to be so few good solutions to chronic pain, I discovered that less than 1 percent of National Institutes of Health research funding is dedicated to pain research.

Dr. Edward Michna, a pain specialist who works with the American Pain Society, ties this to stigma around chronic pain. (The American Pain Society previously received funding from pharmaceutical companies that sold opioid painkillers.) “Even before opioid use became an epidemic, funders and politicians equated pain management with addiction treatment, and they ran away from funding it,” he said.

He pointed to a pervasive belief that these patients were exaggerating their pain to receive disability benefits and, in modern times, to get high on painkillers. “With some notable exceptions, it simply wasn’t an issue they wanted to get involved with.” It would be easy to dismiss his views as biased in favor of big pharmaceutical companies, but as someone who is in pain and wants help, his words resonated with me.

Pain is often a symptom of an underlying condition, which means that research into those conditions will ultimately alleviate pain. Cancer-related pain will probably improve if we find better treatments for cancer in general. But for tens of millions of Americans like me, our pain cannot currently be explained by a separate disease. We need more than just 1 percent of government funding devoted to pain research specifically.

Some researchers are beginning to embrace the theory that pain itself is a type of independent disease. They speak of “central sensitization" — the idea that in some people, for reasons yet unknown, the central nervous system changes over time to experience heightened pain. This isn’t New Age hand waving: It’s real science that demands further study.

Another important question for both researchers and health care providers is improving how we match patients to treatments. Often, when a treatment ends up working, it remains unclear why it worked for a given patient and not for another, similar patient. When we say a treatment like prolotherapy injections has limited scientific evidence, that usually means that in trials, few saw benefits above placebo. If we could figure out what is different about those few who did see real benefits and identify them, the same treatment becomes more useful.

The opioid crisis — as grave as it is — threatens to overshadow these important issues. Right now, states and governing bodies are focused almost exclusively on reducing opioid prescriptions rather than finding alternatives. The National Committee for Quality Assurance, which sets quality standards for health plans, has a new measure that effectively penalizes providers who prescribe patients opioids over a certain dosage amount. Some states, like Maine, put in place caps on opioid doses.

It’s too early to tell how many patients who legitimately need opioids are having trouble accessing them as a result of these policies. But anecdotes from patients and clinicians suggest some people are suffering. Two small-business owners in Maine are suing the stateover rules that require long-term opioid users to lower their dosages. That policy was an understandable reaction to the fact that 313 people in Maine died from opioid overdoses last year. Yet we have to acknowledge the lack of good options for treating chronic pain. We should also recognize that while evidence behind opioids is weak and they are highly risky, some patients have been well-served by them.

Improving how we apply existing treatments also requires workforce training. A 2011 studyfound that US medical schools allotted an average of nine teaching hours to pain management. (The average for Canada was 19.5 hours.) Clinicians across all specialties should receive better training.

Finally, payers in the health care system, starting with Medicare, should think bigger when it comes to treating chronic pain. Patients are often left coordinating their own care among fragmented providers and dealing with arbitrary coverage decisions. For the worst cases, insurers should consider covering some expensive but promising options like comprehensive rehabilitation programs, which involve immersing patients in full-time care with a multidisciplinary team.

As for me, I still treat myself with a combination that I’ve cobbled together through much trial and error: my workstation, a few specific core-strengthening exercises, frequent walks outside, that electrical neuromodulation pad, menthol and capsaicin creams, turmeric pills, Tylenol, Advil, and a muscle relaxant. While I have always been productive at work even when I’m miserable, I feel less miserable now.

I’ve been told often that chronic pain sufferers should manage their expectations and learn to accept some level of pain. It’s good advice. A degree of acceptance has made me more able to keep rolling forward, working hard, day after day. And yet I still dream of finding a treatment that eliminates the pain. I have to believe in the possibility of being pain-free.

Sometimes, as I’m drifting off to sleep, I’ll start half-consciously fantasizing about waking up the next morning, picking up a book, and reading for several hours in a coffee shop — an activity I used to love before it became primarily about the discomfort of the chair. In this reverie, it does not matter how I achieved that respite. Medications, alternative medicine, lifestyle changes, injections, opioids, whatever — what matters is that I found something that works.

Perhaps I’ll find something, or some combination of things, that get me there.

Or perhaps my pain will simply gradually diminish on its own.

Or perhaps it will get worse.

Millions of Americans are similarly hoping for the day when they can be free from chronic pain. Our life-inhibiting problems deserve far more attention from policymakers and the health care system than they’ve gotten. The opioid crisis is indeed dire, but so is the epidemic of chronic pain.

Julian Malinak is president at Canvas Medical. Canvas serves primary care clinicians with highly usable medical record technology that facilitates clinical reasoning. He lives in San Francisco.

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