Early in our first year of medical school we learn how to elicit a pain history. Throughout the clinical years we memorize algorithms for managing patients' pain. So naturally I felt ahead of the game regarding pain management when I was handed my first prescription for Vicodin.
Days earlier, my surgeon had excised the source of the pain that had prompted hospitalization: malignant lymph nodes squashing some nerves against bone. But unlike plumping a flat pillow, decompressing the nerves didn't fix the problem; the ischemic damage had been done.
Many months later, with my cancer in remission and the burning ache improved, I discovered I still had a lot to learn about pain—especially the challenge of living with chronic pain. Here are some of the insights and tips that have helped me, and I hope can help you when caring for survivors with chronic pain.
At post-treatment checkups, patients may minimize their pain, especially if it's mild and/or intermittent. They don't want to complain or distract you from the bigger issue of cancer. Or they assume their pain is expected, untreatable and/or outside your bailiwick.
Whenever I feel hesitant to discuss my pain with my physicians, I say to myself what I used to say to my patients: “Doctor visits are not social visits. Talking about your pain is not complaining, but reporting vital information doctors want and need.”
I remember how, if patients insisted their discomfort was no big deal, I'd refer to the “rubber band” effect, telling them that “If someone snapped a thin rubber band at my forearm, I'd find the sensation annoying but certainly not debilitating. If someone kept snapping rubber bands at me hour after hour, that could drive me crazy.” [Note that I purposely demonstrated the effect on me—and not the patient—to avoid sending the unintended message that I thought the patient couldn't handle discomfort.]
This or a similar vignette may help your patients report all discomforts, no matter how seemingly minor or tolerable in the short run.
Focusing on Meaning
In my practice, one quick question yielded priceless information: “Describe your pain in one sentence, so if I were to develop that pain I would recognize it as the same as yours.” Patients often volunteered metaphors, such as “like my skin is on fire” or “as if someone is pulling a string that starts in my toes and exits the top of my head,” images that helped me better understand their specific pain and tailor their treatment.
Thereafter, I adopted patients' language when calibrating patients' pain: “On a scale of 1–10, how severe is that fiery sensation?” or “How tight does ‘the string’ feel today?” I hoped to reassure them that I both heard and believed them, and that their pain was worthy of my time and attention.
What I didn't fully appreciate at the time was the benefit of providing my patients a way to discuss their discomforts without using the word “pain.” Or that perfect descriptions by themselves risk depersonalizing patients' suffering and minimizing the turmoil of living with chronic pain.
Given your time constraints, how can you get at the heart of the matter? Asking patients how—not if—the discomfort interferes with their ability to eat, sleep, work, or play may elicit answers indicating the need for physical or occupational therapy. Asking how their discomfort impacts good times may prompt patients to divulge fears that exhaust them, grief and anger that strain relationships, and helplessness that drains hope. In just seconds, these “how” questions may open windows of opportunity to recommend needed counseling.
With meaningfulness in mind, you can collaborate with patients to establish realistic, shared goals. While aiming to reduce their pain to a “1 or 2,” you can strive to manage their pain enough that they can once again enjoy important relationships and favorite activities, modified as necessary.
Unlinking Pain and Fears
During my first remission, I knew my pain was due to damaged nerves, not active cancer. But the subconscious link between that familiar pain and the feared recurrence made it difficult for me to relax or ignore it. Here are three steps that helped me:
1. Acknowledging the connection: “If I feel the exact same pain that signaled my original cancer, it's natural to worry.”
2. Reciting the mantra: “Same pain—different problem” to remind me that different problems can cause the same symptom.
3. Reciting the mantra: “Different setting—different pain” to remind me that when the pain was due to lymphoma, I also had adenopathy and other signs of active cancer.
Expecting Post-Checkup Blues
As a patient, one side effect of my reporting pain at checkups surprised me: feeling sad. You see, between office visits I became adept at distracting myself from physical discomforts. I learned to downplay discomforts in social settings to keep my spirits up and avoid others' expressions of sadness or pity.
Before checkups, though, I shifted gears. For days, I'd pay close attention to my pain and even push myself to test my limits. Having pulled aside the healing curtain of denial, the reality of my struggles and losses hit me—and I felt sad.
Once I realized what was going on, I'd tell myself after checkups, “Wendy, you did the right thing to discuss your pain. Now, shift gears. Stop paying attention to the pain.”
If it feels right, validate for patients that talking about pain can be a downer. Applaud patients' successful coping. As soon as your exam is complete, encourage patients to resume the coping skills that work well between visits.
Cancer threatens life. Chronic pain threatens happiness. With the same expertise and energy you bring to treating cancer, use all available resources to help patients optimize their pain management. Show compassion by helping them pursue some happiness today while hoping for a better tomorrow.