Pain is full of dichotomies. It is a human experience so unmistakable that to witness someone else in anguish transcends the need for communication. And yet when we’re sitting in a clinician’s office, pain is good at reminding us of the limits of language.
However it manifests, pain is the most common catalyst for excursions into the world of medicine. It sends us out for help.
Learn how to describe your pain. In most encounters, a numeric one-to-ten rating scale will be used to ask you about the severity of what you’re experiencing. It’s universally effective, but if you don’t like working with it you can request another type of scale to communicate. There is a scale showing faces in pain, as well as other visual analogue scales. In the following pages you’ll find the language and ideas to help you discuss pain in more dynamic terms, which will benefit you as well when talking to your providers.
DESCRIBE THE LOGISTICS OF THE PAIN
When did the pain begin?
What is the pain’s duration?
What relieves the pain?
What aggravates it?
WORDS TO DESCRIBE PAIN
Sharp
Shooting
Tender
Burning
Aching
Stabbing
Dull
Throbbing
Intense
Intermittent
Unrelenting
EFFECTS OF PAIN
Does the pain cause changes in:
Respiration?
Heart rate?
Does the pain cause you to:
Blush?
Have a sudden muscular contraction?
Perspire?
Clench your teeth?
IMPACT ON YOUR LIFE
Does the pain cause you to:
Withdraw from others?
Avoid activities?
Let go of personal hygiene?
Lose sleep?
Using Narrative to Communicate about Pain
Growing up includes the realization that a steadily increasing number of people you know have medical problems. For me it happened within a few years in my late twenties: One friend was diagnosed with MS, another with lymphoma; another called from across the world to tell me she had an ovarian tumor. The average healthy young person often lacks a framework to conceive of these real, life-impacting medical problems. I’ve been one of these lucky healthy people for the most part, and while being a nurse plants the reality of disease in front of me, I still struggle to understand the true impact of chronic pain or debilitating illness on someone’s life. But I have learned lessons from being adjacent to suffering, both that of patients and of people close to me.
One lesson is that the prospect of relaying information or updating others on “how things are going” can be a daunting prospect for people struggling with chronic pain and illness. It requires one to construct a narrative while the story is still developing, or still eludes the patient themselves. And telling this story sometimes means relaying things that are too complicated to unpack in a period of time deemed socially acceptable when a friend or acquaintance asks how you’re doing. Assembling the pieces of this story for providers as the clock is ticking in an exam room can also be a seemingly impossible task. And yet, as a nurse, I know how imperative it is for them to get this information.
It is vital for medical providers not only to hear but also to help create their patients’ narratives. Friends and family can benefit from hearing the story of someone’s pain because it elicits empathy, compassion, and support. But providers need to hear and understand these narratives for one explicit reason: to accurately understand the impact of pain or illness on quality of life and prioritize it accordingly.
There’s very little in our medical system that supports being this vulnerable around a medical provider when appointments are increasingly rushed. When patients are in this position, their capacity is also often limited. Relaying a narrative can take significant mental and emotional reserves.
Tools are emerging to support patients through this process. Narrative medicine, a practice that began at Columbia University in New York, trains providers to create space in appointments for the narrative to emerge, and gives them tools to use it to direct the care they deliver. Today, programs around the country are beginning to adopt the practice.
Here is the concept as Columbia defines it:
The care of the sick unfolds in stories. The effective practice of healthcare requires the ability to recognize, absorb, interpret, and act on the stories and plights of others. Medicine practiced with narrative competence is a model for humane and effective medical practice. It addresses the need of patients and caregivers to voice their experience, to be heard and to be valued, and it acknowledges the power of narrative to change the way care is given and received.
For patients struggling with chronic illness, it’s helpful to find providers, clinics, and hospitals that have training in narrative medicine. I recommend contacting Columbia directly and asking for patient resources (http://www.narrativemedicine.org). It may be too much to take on now, or at specific points in your disease, but it’s a positive, evolving resource that many patients benefit from.
Pain Management in an Opioid Epidemic
Imagine a prominent scientist giving a talk on the opioid epidemic at a highly prestigious university. They stand at the podium in an auditorium endowed by and named after the Sackler family—whose patriarch made his fortune by introducing synthetic opioids to the US market. The stuff of a tragicomedy, it’s surely happened on more than one occasion.
America is in the midst of a twenty-year public health crisis that can be traced to 1995, when Richard Sackler started Purdue Pharma and the company introduced OxyContin to the US market. It’s estimated that the family has seen double digit billions in revenue from this pill, which was marketed to prescribers and patients as “the pain pill to start with and to stay with.” In a story with classic strokes of greed and ego, the company was selective about the research it published and what its sales reps told the medical community.
By 2001, OxyContin had saturated the market. Meanwhile, and not coincidentally, pain management became a top priority in the healthcare industry. The Joint Commission, which accredits and certifies healthcare organizations, declared a veritable war on pain. They elevated it to a fifth vital sign, claiming that clinicians needed to be more proactive about addressing pain and staying on top of it at every turn. The result was a substantial shift in prescribing culture, which trickled downstream to impact the way pharmacies dispensed pain meds and the way pain management was taught in medical school. Opioids are exceptionally effective in controlling pain, and when given in a controlled setting they aren’t addictive. This is a miracle of modern medicine, went the tune. Extended release? Even better! Patients can take fewer pills.
Moving ahead to today:
I was discussing these issues with my friend Jules recently, who, after tearing a tendon in his knee last fall, was handed a prescription for oxycodone with a number of refills that came to something like four hundred pills. Skeptical, and already dealing with various health problems that got in the way, he never filled the prescription.
“Well,” I said, “they used to tell med students it wasn’t addictive!”
“It’s opium, it’s the poppy!” he responded. “We’ve known forever that the poppy is trouble. I don’t buy it.”
We concluded that it’s a classic American story. We discussed how he would never have been handed that prescription if he was less educated, or was of lower socioeconomic status, or wasn’t a white man. Some patients in Jules’ position would be denied the prescription; others would use it without a thought—and potentially greet a lifelong addiction.
There are four general contexts in which opioids are prescribed:*
When pain is acute and must be managed in the hospital (primarily procedure-related and postsurgical pain).
When an individual has little to no quality of life due to unmanaged pain (the pain is so unbearable the patient cannot resume multiple activities of daily life, such as bathing, dressing, or eating).
When a patient is at the end of life, and palliative (comfort) care is the focus.
On a short-term basis, following a procedure where the majority of recovery is done outside of the hospital.
In addressing chronic pain, patients fall along a spectrum. There are those like Jules who, aware of the addictive potential of opioids, avoid using them under most circumstances. There are patients who use them and never develop abuse or addiction (the majority). There are patients who become addicted and start to doctor shop.
There are also, unfortunately, patients who struggle greatly with chronic pain that’s inadequately managed as a result of the new shift in prescribing culture. Today, the directors of the National Institutes of Health and the National Institute on Drug Abuse say the public should no longer expect that chronic pain will be managed 100 percent by medications. Rather, they should expect pain to be managed enough so that they can maintain a quality of life. The directors encourage integrated approaches to pain, focusing on meditation, massage, and acupuncture as adjuncts to pharmacotherapy. Is yoga going to help someone with severe neuropathy? Maybe, maybe not. But the opioid epidemic means that patients have to build trust and open communication with providers so that pain is managed from a place of understanding rather than liability.
Until we can develop a drug that relieves pain as effectively as opioids but doesn’t have their potential for abuse, patients must acknowledge and accept the ramifications of widespread opioid abuse. This understanding is essential to navigating pain management in the midst of an opioid epidemic.
If you do take opioids (and they can be an effective therapeutic option for many patients), here’s what to know about taking them safely:
Don’t abruptly stop taking them.
Don’t take more than directed.
Never take them from another person (who has them left over from their wisdom teeth removal or back surgery, for example).
Don’t store them in another bottle (e.g., an Advil bottle), as this puts others in your household at risk. One dose of methadone for an adult male can cause a child to die from respiratory arrest.
Keep them locked or on your person, out of reach of children and adolescents. Adolescents are the age group most likely to abuse this class of drugs.
Take the smallest effective dose, for the shortest amount of time possible.
Keep in close contact with a provider if you’re taking them at home.
The appendix “Opioid Types and Side Effects” contains information on uncomfortable to fatal opioid side effects. It also lists generic and trade names of all opioids in use today so you can easily identify them.
Severe pain is usually managed, even in hospital settings, with a combination of drugs: an opioid plus a nonopioid (acetaminophen or ibuprofen). Studies have found that when groups of postoperative patients in a blind trial received a combination of either 1) Tylenol plus ibuprofen or 2) Tylenol plus an opioid, there was no clinical or statistical difference in pain management. Do with this information what you will! It’s powerful.
This epidemic, like any, is categorized by its extremes. Most providers will listen to you, take your pain seriously, and help you resolve it. Most patients will not become addicted. But there are patients who don’t receive the pain management they need, those who struggle with lifelong dependency, and those who die from misusing this extremely potent class of drugs. For this reason, providers and patients—unlike the Sacklers—must approach this topic with respect.