My Pain Scale is Broken: Why My '6' Today Might Be Yesterday's '10' (And Why That Matters)

Anyone living with chronic pain knows the routine. The doctor's office, the emergency room, the physical therapist – inevitably, the question comes: "On a scale of 0 to 10, with 0 being no pain and 10 being the worst pain imaginable, what's your pain level right now?"

We dutifully pick a number, mine were usually an 8 or 9, but sometimes the pain was so overwhelming it was higher, and if I was having a good day it was lower. But I got to thinking, what does that number really mean? My pain has changed over the years, so these ratings are not really a true reflection. This number needs perspective to explain what it means. Especially when every year my pain gets a little worse.

So it's something I have wondered off and on for years, and I've wrestled with this question. As someone living with Complex Regional Pain Syndrome (CRPS), a condition often ranked as one of the most painful known, my relationship with the pain scale has become... complicated. I've realized something profound and often misunderstood: my pain scale has shifted. What I might have screamed was a '10' in the early days of my CRPS journey, or even before its onset during an acute injury, might only register as a '6' or '7' on my internal scale today.

This isn't because the pain is less. Paradoxically, it's often because my overall, baseline pain is significantly higher and more constant. My scale has been recalibrated by relentless, severe pain. To be impacted to this magnatude, has actually caused me additional distress, both physically and mentally. I go through the same thing every year...I really struggle in the fall and winter and my pain flares up and increases...historically when Spring rolls around each year and the weather starts to become warmer, my pain decreased, but the last 6 or 7 years this has not been the case. My flare up never goes away and I'm left with even more pain related physical and mental health issues than the previous year. As Spring then Summer arrive, I'm outside more, it's not raining for weeks at a time and my body adjusts to the increased pain. I'm able to be more active and I keep myself busy and the added sunlight is so beneficial to my mental health. 

This phenomenon isn't unique to me or even just to CRPS sufferers. Many people with chronic pain conditions, often referred to within the community as "spoonies," experience this shifting baseline. It's confusing, frustrating, and can lead to dangerous misunderstandings in medical settings.

Let's break down why this happens, how it impacts us, and what we can do about it.

What Pain Scales Are Supposed To Do

Pain scales (like the Numeric Rating Scale - NRS, Visual Analog Scale - VAS, or the Faces Pain Scale) were designed as communication tools. They aim to:

1. Quantify Subjectivity: Provide a seemingly objective measure for an inherently subjective experience.

2. Track Changes: Help patients and doctors monitor if pain is worsening, improving, or staying the same over time or with treatment.

3. Assess Severity: Give clinicians a quick snapshot of how much pain a person is currently experiencing.

In acute situations – a broken bone, post-surgical pain – they can be reasonably effective. The "worst pain imaginable" might be easier to define when your baseline is typically low pain or no pain.

The Problem: Chronic Pain and the Shifting Baseline

Chronic pain changes everything. When pain isn't a temporary event but a constant, unwelcome companion, the brain and body adapt in complex ways. I know this first hand how damaging chronic pain can be to your brain and it's ability to remember things and cognitively process what's going on around you. It's not easy when your body is screaming in pain at you.

1. Habituation and Adaptation: Your nervous system, and your conscious mind, can become somewhat habituated to a constant level of pain. It doesn't mean the pain signals aren't there or aren't intense, but the shock value diminishes. The constant "noise" of severe pain becomes the new background static of your life. What was once an alarming '8' becomes just... Tuesday. I relate to this so much. This is something I have felt strongly about for years, and when I had to fill out a pain questionnaire every time I went to the pain specialist, I always added notes and explanations to the numbers as my pain is complex and I wanted to be clear about what was going on in my body.

2. Central Sensitization: Conditions like CRPS often involve central sensitization. This means the central nervous system (brain and spinal cord) becomes hypersensitive. Pain signals are amplified, and stimuli that shouldn't hurt (like a light touch, clothing, or even a change in temperature) can trigger excruciating pain (allodynia). This constant state of high alert and amplified signaling raises the overall "volume" of pain, making the old "maximum" seem less extreme in comparison to the new potential peaks or the sheer relentlessness of the baseline. I have much of what I just described. Light touch or pressure hurts SO much, and the pain lasts long after the contact with the sensitive area has ended.

3. Redefining "Worst Imaginable": For someone with progressive CRPS, the "worst pain imaginable" isn't a static concept. As the condition worsens over years, introducing new levels of burning, stabbing, aching, electrical sensations, and extreme sensitivity, the ceiling for "10" gets pushed higher and higher. The pain I experience during a severe CRPS flare now dwarfs what I thought was unbearable five years ago. Therefore, my day-to-day "tolerable" (a relative term!) pain level gets rated lower on the 0-10 scale, even if its absolute intensity would have floored my past self. If this is occuring to you, my suggestion is that you document it in a pain journal so that you have concrete facts to show your doctor, and an explanation of what each pain rating means. 
   
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4. Comparing Apples and Oranges (Acute vs. Chronic): My memory of a past "10" (maybe kidney stones, a severe fracture before CRPS) feels different from my current CRPS pain, even if I rate the CRPS lower today. The quality and constancy of chronic nerve pain are distinct. So, when asked to rate my current CRPS pain, I might mentally compare it to the peak agony of a full-blown, multi-day CRPS flare, not to the acute pain of a past injury. This makes my daily baseline number seem lower.

The Impact: Miscommunication and Under-Treatment

This shifting scale is a major barrier to effective communication and care:

• Underestimation: A doctor might hear "6" and think, "Moderate pain, manageable." But for me, with my CRPS history, a "6" might mean I can barely walk, can't focus, and am struggling significantly – a level that might be an "8" or "9" for someone without this chronic baseline. This is why it's important to be specific and give as much detail as possible. 

• Invalidation: Patients feel unheard or disbelieved when their reported number doesn't seem to match the severity of their described experience or the known pathology of their condition. Chronic pain is an invisible disability/invisible illness and this can lead to other's dismissing our pain or not believing it's as bad as we say it is, because we look "fine". 

• Treatment Decisions: Treatment intensity, medication choices, and urgency can be inappropriately scaled down if based solely on a number that doesn't reflect the patient's recalibrated reality. I cannot stress this enough, it is so important to keep a record of your pain and other symptoms. Especially the type of pain and what triggers it to get worse. Doctors like data, and coming to an appointment prepared, with extensive ratings details on a daily basis, and they are more likely to take you seriously and treat your pain seriously. If you go to your appointments and have vague descriptions, or are not sure about some of the details (brain fog...I often need to track it or I forget all the details I need to relay to my doctor), they are less likely to take you seriously. Being prepared will get you better medical care, plain and simple.

Solutions: Moving Beyond Just the Number

So, how do we navigate this? How do we communicate our reality effectively?

For Patients ("Spoonies"):

1. Anchor Your Scale (and Explain It): Define what the numbers mean to you, now. Write it down if needed.

   • Example: "Okay, Doc, for me and my CRPS: 0 is zero pain (rare!). 1-3 is 'background noise' I can mostly ignore. 4-6 means it's significantly impacting my focus and activity, I need medication, and I have to modify my day heavily. 7-8 means I can barely function, minimal activity, severe pain. 9-10 is unbearable, potentially ER-worthy, complete incapacitation." Explicitly state: "My '6' today is probably what someone else might call an '8' or '9', because my baseline is so high."

2. Focus on Function: Supplement the number with descriptions of how the pain impacts your life right now.

   • "It's a 6, and that means I couldn't sleep more than two hours last night."

   • "I'm calling it a 7, which means I haven't been able to bear weight on my foot all morning."

   • "This is my baseline 5, meaning I had to cancel my plans because I can't handle the cognitive drain."

3. Describe the Pain Quality: Use descriptive words – burning, stabbing, aching, electrical, crushing, tingling. "It's a burning 7 in my foot, with sharp, stabbing pains up my leg."

4. Track Trends: Instead of just the absolute number, focus on change. "It's higher than yesterday." "My baseline has crept up from a 4 to a 6 over the last month." "This medication brought my peak flare pain down from a 9 to a 7."

5. Advocate Clearly: Don't be afraid to say, "My pain scale has shifted over the years due to the constant high pain of CRPS. Please understand that my reported number needs to be interpreted in that context."

For Healthcare Providers:

1. Ask Clarifying Questions: "What does that number mean for you today?" "What activities is this pain preventing you from doing?" "How does this compare to your usual pain level?"

2. Listen to the Whole Story: Pay attention to functional limitations, pain descriptions, and changes over time, not just the number.

3. Understand Chronic Pain Pathophysiology: Recognize that conditions like CRPS involve mechanisms (like central sensitization) that fundamentally alter the pain experience and reporting.

4. Believe Your Patient: Trust that they are the expert on their own experience. Their "6" might be genuinely debilitating. Validate their experience.

5. Use Multiple Tools: Consider functional assessments (like the Brief Pain Inventory) alongside numeric scales.

Conclusion: Context is Everything

The 0-10 pain scale is a tool, but like any tool, it has limitations. In the context of chronic pain, especially severe and progressive conditions like CRPS, its simplicity can be misleading. My "10" isn't what it used to be, precisely because the landscape of my daily pain experience has been so drastically altered.

By understanding why this shift happens – the adaptation, the neurological changes, the redefinition of suffering – both patients and clinicians can work towards better communication. We need to supplement the number with context, functional impact, and clear descriptions. Only then can we ensure that the unique, challenging reality of living with high-impact chronic pain is truly understood and appropriately managed. My pain scale might be "broken" in its original intent, but by adding layers of explanation, we can start to fix the communication breakdown it can cause.