“Down the Rabbit Hole” of Chronic Pain

“Down the Rabbit Hole” of Chronic Pain July 23, 2014

On the Washington Post web site, I came across an edited version of Janice Lynch Schuster’s story about chronic pain and opioid use. (The edited version is here, while the longer, more complete version is here on the HealthAffairs.org web site. I quote here from the original, longer HealthAffairs version.)

The basic story is that Schuster had what she expected to be routine oral surgery that has led to agonizing, ongoing pain in her tongue and mouth. Her oral surgeon, baffled by the problem (though Schuster later found a number of stories online of people who had similar problems after the same procedure), has continued to prescribe opioid pain relievers. In consultation with a neurologist, emergency room doctors, and other professionals, Schuster has tried a host of medications, from opioids to anti-depressants, some of which have helped, some of which caused too many unpleasant side effects. Schuster tells a story with which I’m all too familiar. Commenting on being reliant on opioid medications at the same time that the public is being warned of an epidemic of painkiller abuse, Schuster writes:

Pain patients like me often feel trapped between the clinical need to treat and manage pain and the social imperative to restrict access to such drugs and promote public safety.

She tells stories of a doctor who assumes she must be depressed, because he believes that all chronic pain patients are (a questionable observation that nevertheless begs the question of whether depression exacerbates pain, or pain leads to depression). She tells of having to convince medical assistants and pharmacists that her need for powerful, addictive drugs is legitimate, when so often these professionals are convinced that anyone reliant on these medications—especially those whose suffering and frustration might lead them to actually beg for help—must be drug-seeking addicts. She tells of prescription refills that require hours or days of phone calls and conversations with physicians’ offices, insurance companies, and pharmacists, who have a legitimate need to regulate potentially dangerous medications but are also quick to dismiss the person in pain who just wants relief. She describes trying alternative therapies and making lifestyle adjustments, which “lift my spirits but do not reduce the near-constant presence of pain.”

Schuster concludes:

I am weary of this experience. When I am not overwhelmed by pain, or depressed by it, I am furious at the attitudes I encounter, especially among physicians and pharmacists. It has been stigmatizing and humiliating. The cost to my productivity has been steep, and the toll on my family has been high. I have spent countless hours in doctor’s offices, and even more hours in bed. Some people find meaning in suffering, but I find none.

I read science news closely, hoping that some new non-narcotic pain treatment will yield better and more effective treatments that do not include the risk of abuse and addiction. In the meantime, though, pain sufferers like me swim against two tides: the pain itself and the experience of seeking treatment for the pain. Pain represents a complex nexus of mind and matter. Surely, for all our yearning to understand both, we can find better ways to ease the suffering and devise treatments and strategies that do more good than harm and that do not shame and stigmatize those who suffer.

I can relate to every single one of the experiences and emotions that Schuster describes, with one exception: I rarely end up in bed because of pain. My pain is effectively managed by opioids most of the time (despite the headaches I regularly encounter in getting my prescriptions filled on time and without hassle). As a primary caregiver of children, I rarely have days when I don’t have to at least make meals and drive kids around—a dynamic for which I am grateful as it forces me to keep moving no matter what. I do have days when increased pain or mild withdrawal symptoms (because I’m gradually lowering the opioid doses I take regularly) keep me feeling under the weather.

Here’s the problem with so much of the media coverage of our society’s very real, very dangerous overuse of opioid painkillers: Mainstream media coverage of stories like Schuster’s, about people with legitimate pain who are caught between their need for relief and others’ concern over a public health crisis, are rare. More common are articles that focus on overdose deaths, young people or celebrities who become addicted to a lethal mixture of prescription drugs, or people who become dependent on opioid pain relief when it’s apparent that such therapy is not the best treatment for their type of chronic pain. Often, there is a single sentence in these articles along the lines of, “Of course, opioid therapy can provide relief to some people with chronic pain.” But those stories, of those people, of whom I am one and Janice Lynch Schuster is another, are rarely fleshed out in detail. I don’t want doctors or pharmacists or the FDA to ignore the evidence that opioids pose a major threat to public health. I just want stories like mine to be told, and heard, as we discuss and debate how to prevent the problem of painkiller addiction and abuse.

Read my story of chronic pain, opioid pain relief, and being trapped between my needs and social concerns about abuse, and my reflection on Phillip Seymour Hoffman’s overdose death earlier this year. 

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