Chapter 1: The Pain Scale Dilemma

Every month, I face a familiar question: “How’s your pain?”

I have a rare genetic condition known as multiple epiphyseal dysplasia (M-E-D), which has led to deformed joints throughout my growth. This has resulted in eight joint replacements (both hips twice, both knees, and both shoulders), along with fused ankles. Consequently, my body is constantly inflamed, and I experience pain from head to toe. While potent pain medications help me manage to function, the question about my pain level remains a complex issue.

To obtain the medications I require, I visit a pain management clinic each month. When my doctor asks about my pain, she expects a numerical response ranging from 0 (no pain) to 10 (the worst conceivable pain). This is where I find myself caught in what I like to call “The Pain Game.”

It's essential to recognize that my prescriber genuinely cares about my well-being and seeks an honest response. However, the nature of the question is fraught with complications.

From my experience, patients often lack clear guidance on how to accurately assess their pain scores. I wish my healthcare providers would address questions like, “What does the scale truly represent?” “How should I determine my score?” and “In what way does my score influence my treatment plan?” Instead, they simply ask for a number to log in my medical records.

With no clear direction, I find myself calculating potential outcomes in my mind: If I report a score that's too low, my doctor might assume I’m managing well and might limit my prescription. Conversely, if I say a number that’s excessively high—like a dreaded 10—she may dismiss my pain as exaggerated. If I claim a level that significant, it feels like I should be in visible distress, writhing in agony. I fear she might conclude, “He’s being overly dramatic,” a common stereotype faced by chronic pain patients.

Even stating a 9 feels excessive, not because that’s outside my pain range at times, but because I want to leave room for when things worsen. It’s akin to scoring in Olympic diving; judges hesitate to award top marks early in the competition to allow for better performances later on.

Thus, I typically report a score of 7 or 8, gauging that it reflects the seriousness of my pain without sounding exaggerated. (Besides, I can certainly envision pain worse than what I experience.) Scores of 3 to 6 seem to indicate a moderate level of pain, which doesn’t accurately capture my experience. I perceive 0 to 2 as nearly painless, a rarity in my condition.

My habit of consistently reporting 7 or 8 means my pain scores remain relatively stable over time, mirroring my ongoing discomfort. While my pain fluctuates throughout the day and week, it consistently ranks poorly when averaged over a month.

When my doctor inquires about my pain during my appointment, the question feels futile. Perhaps it’s a placebo effect, but I rarely feel my most intense pain while at a medical facility. I primarily need assistance for the times when my pain spirals out of control.

In this Pain Game, I’m not being deceitful with my healthcare provider. Instead, I’m estimating a score that best conveys my experience because I rely on my medications. I acknowledge my dependence on opioids, though I’m not addicted. The thought of abrupt cessation and facing withdrawal terrifies me.

I cannot afford the risk of my pain level being deemed too low by my doctor—or worse, by a politician—leading to restrictions on my medication.

My prescriber understands that patients often adjust their reported pain scores. While she empathizes, she wishes everyone would be entirely transparent. The truth, however, is that complete accuracy is unfeasible. There’s no method to precisely quantify the sensations I or any other patient experiences. Pain is inherently subjective.

Placing the burden of the pain rating on patients is problematic. It’s not as if each of us possesses an internal gauge that provides a specific score. This question tends to confuse and pressure individuals like me instead of yielding scientifically reliable data.

Pain manifests in various forms—aches, zaps, shocks, stabs, pins and needles—each differing in intensity, type, and effect. These sensations occur within our bodies, often invisible to others, despite visible injuries that might elicit sympathy.

Pain thresholds differ among individuals. Research indicates that, generally, men tend to have a higher pain tolerance than women. Yet, how comparable is pain across different individuals?

The reality is that my pain cannot be equated to yours. Each experience is distinct; our pain is our own.

For chronic sufferers like myself, this reality renders pain an isolating experience.

Chapter 2: The Limitations of Pain Scales

Physicians, clinicians, and researchers, driven by a scientific mindset, persist in their attempts to quantify pain. Most scales employ a 0-10 model, often represented with emoticons ranging from joyous to agonized expressions.

The limitations of these pain scales are numerous. An article from the Mayo Clinic Press points out several critical shortcomings:

1. Momentary Assessment: Many scales focus solely on a person's pain level at the time of evaluation, neglecting how pain influences daily life.
2. Unique Pain Tolerance: Each individual's pain tolerance is shaped by biological and psychological factors, including genetics.
3. Pain History: Previous or ongoing pain experiences inform coping mechanisms and treatment responses.
4. Emotional Influence: Emotions can skew pain ratings; individuals often feel additional emotions such as anxiety or stress alongside physical pain.
5. Activity-Dependent Pain: Pain levels can fluctuate based on activity; for example, chronic back pain may intensify after prolonged sitting but improve during physical activity.
6. Temporal Fluctuations: Many assessments fail to capture how pain varies throughout the day or week. Recent studies suggest that asking individuals to rate their average pain over a longer duration yields more reliable data.

Despite their limitations, pain scales endure because there is no superior alternative. While fMRIs can illuminate pain's effects on the brain, the results are far from definitive, and the scans are impractical for most patients.

Researchers rely on self-reported data for comparative studies, but such numbers lack objectivity, unlike measurable parameters like blood pressure. In aggregating pain data, the old computer adage GIGO (Garbage In, Garbage Out) holds true.

I can identify one legitimate use for the 0-10 pain scale: tracking individual pain changes over time. For instance, if someone reports a decrease in acute pain from 7 to 4 within a month, it may indicate healing. In contrast, chronic pain, lasting beyond three to six months, often resists improvement.

Pain expert Dr. Andrea Furlan, in her book 8 Steps to Conquer Chronic Pain, acknowledges the pain scale's utility, albeit with caveats for acute pain:

"When it comes to chronic pain, quantifying pain becomes even more complicated. Numbers often fail to make sense when someone experiences constant discomfort. For many, a pain level of 4 can feel like 11 due to its relentless nature. Most patients express that these questions are nonsensical, yet we lack better methods for measuring pain intensity."

Yet, both doctors and patients like myself are left with no choice but to rely on pain scales, leading to inevitable distortions in pain reporting. The process is inherently subjective, flawed, and ultimately somewhat ineffective, yet we accept it as the best available tool.

So, how’s my pain? Still an 8.

Thank you for asking.

Randall H. Duckett is currently authoring Hurt Feelings: Inside the Emotions of Living in Chronic Pain. He encourages fellow sufferers to share their stories for inclusion in the book. Reach him at [email protected]. He is also the author of Seven Cs: The Elements of Effective Writing (available on Amazon); visit randallhduckett.com for more information.

The first video titled "How The Pain Scale Should Be Explained" provides insights into the complexities of pain assessments and discusses how pain scales can be more effectively communicated.

The second video, "Pain Assessment by C. Dowling | OPENPediatrics," explores the intricacies of assessing pain in pediatric patients, offering a deeper understanding of the pain management process.