The Pain Scale is a Pain, but Doctors Ignore Alternatives

By Crystal Lindell

When I first started having debilitating rib pain more than 10 years ago, doctors would constantly ask me to rate my pain on a scale of 1-10. 

It was the worst pain I had ever experienced, but I didn’t want to sound too dramatic, so I would almost always tell them an 8 or a 9. 

However, I started to notice a troubling pattern: No matter what number I said, the doctors still treated me with the same mostly dismissive attitude. 

So, regardless of whether I said my pain was a 7, a 3, or even an 11, the doctors I was dealing with did not seem to believe me. They seemed to think I was being dramatic no matter what. 

At the time, I blamed myself. Surely I must not be communicating the severity of my pain well, if these doctors are still ignoring me, I thought. 

So I started scrounging around online for alternatives. I assumed that if I just explained myself better, then they would react with the urgency that I felt the situation called for.  

I also thought that perhaps I was picking the wrong number, which was causing doctors to dismiss me as someone who couldn’t accurately assess my own body. 

The first thing I found was a pain scale written out, where each number was explained, like this one from “My Health Alberta.” 

It includes a written description with each number, starting with:

0 = No pain.

1 = Pain is very mild, barely noticeable. Most of the time you don't think about it.

2 = Minor pain. It's annoying. You may have sharp pain now and then.

3 = Noticeable pain. It may distract you, but you can get used to it.

And so on. 

Looking at that chart, I decided that my new rib pain – which was eventually diagnosed as intercostal neuralgia that was caused by Ehlers-Danlos Syndrome – was a: “8 = Very strong pain. It's hard to do anything at all.”

The fact that I would often just lay on the exam table silently crying while I prayed that whatever doctor I was in front of would actually help me, made me feel pretty confident in my assessment of an “8.”. 

It was, indeed, very strong pain that made hard to do anything at all. 

I was also naive enough to believe that if I personally added the descriptor when I gave my number, that it would serve as some sort of magic spell that would finally unlock access to the treatment I needed. 

Alas, that did not work. Doctors just nodded and typed “8” into their little online chart and then moved on through the appointment the same way that they always had: With their trademark unsympathetic arrogance and suggestions about taking more gabapentin.  

After that, I went a step further: I tried to find a pain scale that felt more relevant. Eventually, I discovered the Quality of Life Scale, (QOLS). It’s designed for chronic pain patients to show how their pain is impacting their daily life.  

It's a reverse of the traditional pain scale, in that 0 is the worst pain, while 10 means you're doing pretty well. 

It features descriptions like: 

0: Stay in bed all day. Feel hopeless and helpless about life. 

1: Stay in bed at least half the day. Have no contact with the outside world. 

All the way up to:

10: Go to work/volunteer each day. Normal daily activities each day. Have a social life outside of work. Take an active part in family life. 

At the time, I was about a 4: Do simple chores around the house, minimal activities outside the home two days a week. 

Although those "activities" were just doctor's appointments, I was technically leaving my house every few days.

Looking back, I truly believed that using the QOLS scale with my doctors would be the breakthrough moment for my relationship with them. I remember printing it off and putting it in my healthcare binder full of hope that they would finally understand how bad things were for me. 

Alas, I was mistaken. 

Before I started having chronic pain, I was working a full-time job and a part-time one, and living independently. But my pain had gone untreated for so long that I had cut back on everything possible in my life. I shifted my full-time job to a work-from-home position, quit my part-time job, gave up my apartment, and moved in with family, who lived 2 hours away. 

I still remember thinking that when I told the two doctors I was seeing regularly about how I needed to quit my job and move in with my mom, that they would FINALLY see how severe my pain had been. Afterall, these were the real-life implications of where I was on the QOLS pain scale! 

Wrong again. Instead, both doctors just expressed quiet relief that I was moving out of the area, and thus I’d no longer be their problem! 

Thankfully, when I moved, I did find a new doctor who did take my pain seriously. And although it took some time to get the pain treatment situation under control, it’s been relatively well managed for years now. 

What I have come to realize about the pain scale is that most of the time, it’s not so much an assessment tool as it is a way for patients to feel a false sense of agency over their medical situation.

It’s like a little breadcrumb that doctors give patients to make them feel included in their own healthcare. 

Because in practice, doctors don’t give much weight to whatever number you say your pain is at. Instead, they rely on their own visual and sometimes physical assessment to determine how much pain they think you are in. 

This can be especially problematic for patients from oppressed or marginalized groups, because doctors are less likely to take their pain seriously in general. 

It’s also a huge problem for patients with chronic pain. That’s because when you live with pain every single day, you don’t react to a 10 on the pain scale the same way someone with acute pain would. It’s just not possible to live everyday screaming at the top of your lungs, or performing whatever stereotypical action doctors assume that someone with “real” pain would exhibit. 

For example, one of the things I learned quickly is that I needed to keep myself as calm as possible during a pain flare, because the more stressed and anxious I got, the more it elevated my pain. 

However, a 10 on the pain scale is still just as horrific, even if you’ve been at a 10 for months at a time. And it should elicit the same sense of urgency that would be customary for someone in acute pain saying that their pain was at a 10. 

In fact, I’d go so far as to argue that a 10 for a chronic pain patient can be even more harmful, because if you’re dealing with that level of pain for a long time, it will likely destroy your life. 

Unfortunately, most doctors can’t grasp any of this. So if you show up to an emergency room with an eerie sense of calm while trying to tell them that your pain is a 10/10, they are likely to be very skeptical. 

I wish I could end this column with some sort of solution for patients, but sadly, I don’t think I have one. If your doctor isn’t taking your pain seriously, they probably won’t change their approach just because you show them a different version of a pain scale. 

No, the solution to the frustrating experience of the pain scale will have to come from the other side: from doctors. 

My suggestion is that they start by just believing all patients and then responding accordingly. Unfortunately, under our current healthcare system, I don’t see that happening any time soon.

So all I’ve got for now, is all I’ve ever got: My hope for you that you’re not in too much pain today. 

Pain Shouldn’t Be Rated on a Scale of Zero to 10

By Dr. Elisabeth Rosenthal, KFF Health News

Over the past two years, a simple but baffling request has preceded most of my encounters with medical professionals: “Rate your pain on a scale of zero to 10.”

I trained as a physician and have asked patients the very same question thousands of times, so I think hard about how to quantify the sum of the sore hips, the prickly thighs, and the numbing, itchy pain near my left shoulder blade. I pause and then, mostly arbitrarily, choose a number. “Three or four?” I venture, knowing the real answer is long, complicated, and not measurable in this one-dimensional way.

Pain is a squirrely thing. It’s sometimes burning, sometimes drilling, sometimes a deep-in-the-muscles clenching ache. Mine can depend on my mood or how much attention I afford it and can recede nearly entirely if I’m engrossed in a film or a task.

Pain can also be disabling enough to cancel vacations, or so overwhelming that it leads people to opioid addiction. Even 10+ pain can be bearable when it’s endured for good reason, like giving birth to a child. But what’s the purpose of the pains I have now, the lingering effects of a head injury?

The concept of reducing these shades of pain to a single number dates to the 1970s. But the zero-to-10 scale is ubiquitous today because of what was called a “pain revolution” in the ’90s, when intense new attention to addressing pain — primarily with opioids — was framed as progress.

Doctors today have a fuller understanding of treating pain, as well as the terrible consequences of prescribing opioids so readily. What they are learning only now is how to better measure pain and treat its many forms.

About 30 years ago, physicians who championed the use of opioids gave robust new life to what had been a niche specialty: pain management. They started pushing the idea that pain should be measured at every appointment as a “fifth vital sign.” The American Pain Society went as far as copyrighting the phrase.

But unlike the other vital signs — blood pressure, temperature, heart rate, and breathing rate — pain had no objective scale. How to measure the unmeasurable? The society encouraged doctors and nurses to use the zero-to-10 rating system. Around that time, the FDA approved OxyContin, a slow-release opioid painkiller made by Purdue Pharma. The drugmaker itself encouraged doctors to routinely record and treat pain, and aggressively marketed opioids as an obvious solution.

To be fair, in an era when pain was too often ignored or undertreated, the zero-to-10 rating system could be regarded as an advance. Morphine pumps were not available for those cancer patients I saw in the ’80s, even those in agonizing pain from cancer in their bones; doctors regarded pain as an inevitable part of disease.

In the emergency room where I practiced in the early ’90s, prescribing even a few opioid pills was a hassle: It required asking the head nurse to unlock a special prescription pad and making a copy for the state agency that tracked prescribing patterns. Regulators (rightly) worried that handing out narcotics would lead to addiction. As a result, some patients in need of relief likely went without.

After pain doctors and opioid manufacturers campaigned for broader use of opioids — claiming that newer forms were not addictive, or much less so than previous incarnations — prescribing the drugs became far easier and were promoted for all kinds of pain, whether from knee arthritis or back problems.

Assessing Pain as Vital Sign

As a young doctor joining the “pain revolution,” I probably asked patients thousands of times to rate their pain on a scale of zero to 10 and wrote many scripts each week for pain medication, as monitoring “the fifth vital sign” quickly became routine in the medical system. In time, a zero-to-10 pain measurement became a necessary box to fill in electronic medical records.

The Joint Commission on the Accreditation of Healthcare Organizations made regularly assessing pain a prerequisite for medical centers receiving federal health care dollars. Medical groups added treatment of pain to their list of patient rights, and satisfaction with pain treatment became a component of post-visit patient surveys. (A poor showing could mean lower reimbursement from some insurers.)

But this approach to pain management had clear drawbacks. Studies accumulated showing that measuring patients’ pain didn’t result in better pain control. Doctors showed little interest in or didn’t know how to respond to the recorded answer. And patients’ satisfaction with their doctors’ discussion of pain didn’t necessarily mean they got adequate treatment.

At the same time, the drugs were fueling the growing opioid epidemic. Research showed that an estimated 3% to 19% of people who received a prescription for pain medication from a doctor developed an addiction. Doctors who wanted to treat pain had few other options, though.

“We had a good sense that these drugs weren’t the only way to manage pain,” Linda Porter, director of the National Institutes of Health’s Office of Pain Policy and Planning, told me. “But we didn’t have a good understanding of the complexity or alternatives.”

The enthusiasm for narcotics left many varietals of pain underexplored and undertreated for years. Only in 2018, a year when nearly 50,000 Americans died of an overdose, did Congress start funding a program — the Early Phase Pain Investigation Clinical Network, or EPPIC-Net — designed to explore types of pain and find better solutions. The network connects specialists at 12 academic specialized clinical centers and is meant to jump-start new research in the field and find bespoke solutions for different kinds of pain.

A zero-to-10 scale may make sense in certain situations, such as when a nurse uses it to adjust a medication dose for a patient hospitalized after surgery or an accident. And researchers and pain specialists have tried to create better rating tools — dozens, in fact, none of which was adequate to capture pain’s complexity, a European panel of experts concluded.

The Veterans Health Administration, for instance, created one that had supplemental questions and visual prompts: A rating of 5 correlated with a frown and a pain level that “interrupts some activities.” The survey took much longer to administer and produced results that were no better than the zero-to-10 system.

By the 2010s, many medical organizations, including the American Medical Association and the American Academy of Family Physicians, were rejecting not just the zero-to-10 scale but the entire notion that pain could be meaningfully self-reported numerically by a patient.

In the years that opioids had dominated pain remedies, a few drugs — such as gabapentin and pregabalin for neuropathy, and lidocaine patches and creams for musculoskeletal aches — had become available.

“There was a growing awareness of the incredible complexity of pain — that you would have to find the right drugs for the right patients,” Rebecca Hommer, EPPIC-Net’s interim director, told me.

Researchers are now looking for biomarkers associated with different kinds of pain so that drug studies can use more objective measures to assess the medications’ effect. A better understanding of the neural pathways and neurotransmitters that create different types of pain could also help researchers design drugs to interrupt and tame them.

Any treatments that come out of this research are unlikely to be blockbusters like opioids; by design, they will be useful to fewer people. That also makes them less appealing prospects to drug companies.

So EPPIC-Net is helping small drug companies, academics, and even individual doctors design and conduct early-stage trials to test the safety and efficacy of promising pain-taming molecules. That information will be handed over to drug manufacturers for late-stage trials, all with the aim of getting new drugs approved by the FDA more quickly.

The first EPPIC-Net trials are just getting underway. Finding better treatments will be no easy task, because the nervous system is a largely unexplored universe of molecules, cells, and electronic connections that interact in countless ways.

The 2021 Nobel Prize in Physiology or Medicine went to scientists who discovered the mechanisms that allow us to feel the most basic sensations: cold and hot. In comparison, pain is a hydra. A simple number might feel definitive. But it’s not helping anyone make the pain go away.

Elisabeth Rosenthal, MD, is Editor-in-Chief of KFF Health News. She worked as an emergency room physician before becoming a journalist. KFF Health News is a national newsroom that produces in-depth journalism about health issues. 

How Emojis Could Enhance Pain Care

By Pat Anson, PNN Editor

Because pain is subjective and varies from patient to patient, there has long been a debate in the medical community about the best way to measure it.

The two most widely used methods, the numeric 0 to 10 pain scale and the Wong-Baker scale, both rely on patients to self-report their pain levels by assigning a number or a face to it. Someone in severe pain, for example, might rate it an “8” or point to an unhappy, grimacing face to help their doctor understand how much pain they are in.

Not exactly cutting-edge science, is it?

In an effort to find a more useful way to measure pain in the digital age, researchers at Massachusetts General Hospital (MGH) asked 109 patients to rate their pain on a numerical scale and by using an electronic device to select one of six emoji faces modeled after the Wong-Baker scale. The patients suffered from abdominal, chest, back or extremity pain, and were admitted for emergency care or surgery at MGH.

JAMA IMAGE

The study findings, published in JAMA, showed no discernible difference between the numerical and emoji scales – suggesting that digital emojis can be useful in collecting patient health data, particularly for young children and individuals with different cultural, language and cognitive abilities.

"By demonstrating concordance between emoji and the numerical pain rating scale, we've validated the use of emoji as an accurate, open-source and economical alternative to popular visual analog pain scales such as Wong-Baker," first author Shuhan He, MD, an MGH emergency department attending physician, said in a press release.

"Because emoji are open source and digital, they could encourage collection of data on a patient's condition over days, weeks, or months—information that could then be integrated into electronic health records and documented on patients' charts."

Rather than just an online fad, Dr. He and his colleagues say colorful emoji symbols could be a practical and imaginative way to break down communication barriers in the hospital setting.

"If a clinician doesn't understand the patient due to a language barrier or disability, it's tantamount to no treatment at all," said senior author Jarone Lee, MD, vice chief of Critical Care and Trauma Emergency Surgery at MGH. "Among populations that could benefit are patients in the intensive care unit who may have difficultly speaking, such as those on mechanical ventilators who need an alternative way to characterize their pain to caregivers."

Digital emojis originated in Japan over a decade ago. Of the 3,500 emoji symbols approved for use by the Unicode Consortium -- a nonprofit that maintains uniform text standards for computers — only 50 are relevant to medicine.

The first medical emojis, introduced in 2015, were the syringe and the pill. Emojis have since been added to represent disability, a stethoscope, bone, teeth, heart and lungs. Dr. He is working with professional medical societies to develop more emojis – including ones to represent pain -- with the goal of getting them approved by the Unicode Consortium.

He believes medical emojis could become mainstream tools for enhancing diagnosis and treatment. In emergency room cases where timing is critical, emojis could lead to a point-and-tap form of communication that bridges language gaps and speeds clinical decisions.

"As physicians, our job is to know how patients feel," Dr. He said, "and the use of emoji allows us to make that process more equitable and thus improve healthcare delivery for all patients in a very meaningful way."

A Pained Life: The Language Barrier

By Carol Levy, PNN Columnist

Many years ago, I was in Brazil. I only spoke “pigeon” Portuguese. I walked into a diner, looked at a menu and saw something that looked good.

The counterman came over. I thought I said, “I would like the egg sandwich.” But I must have said something bizarre, because he walked away, twirling his finger by his ear and said, “Ella es loco.” She's crazy.

“No, no. Yo soy Americano,” I said. I am American.

Suddenly all eleven customers in the diner crowded around me asking, “Voce quiero que?” What do you want?

They figured it out and ordered for me. We continued to “talk” using hand signals and some of my “Portuguese.”

That memory reminds me of an episode of the TV show “Scrubs” in which a doctor asks his patient, “What level is your pain?”

The patient makes a face, mouth turned down, eyes almost crossed, forehead scrunched up. The doctor looks at a pain scale chart, the one that has faces going from “I’m okay” to “My pain is horrid.” The man's expression matches the face that shows he’s really hurting. “Ah. Your pain is severe,” the doctor says.

In both instances, the language gap is breached.

Things would be so much easier for us if this was how it worked between doctors and patients; having a communal experience in understanding our pain.

So many different pain scales are out there, all essentially the same: 0 = no pain and 10 = the worst pain imaginable.

I think adjectives express it better than numbers or faces, but using words like stabbing, aching, pulling and torture may actually harm us. “Torture” to me means horrendous pain, but to a doctor it may sound like exaggeration or hysteria. To me, “twinge” means painful, but to a doctor it may be pain that is not that bad and can be dismissed.

My recent brain implant made my pain much worse. I have never been good about talking about my pain. I rarely mention it, the level or how it feels. My doctors know what it is, they know from my history the effect it has had on my life. They know I am housebound for 80% of the time in an effort not to make the pain worse.

I called my neurosurgeon and used words he has never heard me speak, “I can’t take it anymore. It is almost unbearable. Please, take it out.”

Despite the pandemic and the ban on elective surgery, he scheduled the implant removal surgery within two weeks of our call. He understood me.

Probably no other doctor would have. My pain scale is not 0 to 10. Ten is the lightning, searing, knife-like pain I got from trigeminal neuralgia. Absent that, which thankfully I no longer have, nothing can or will ever reach 10.

My pain doesn’t slide. If I don’t use my eyes, which is what triggers my pain, I can be at 0. But once I start using them, I can go from 0 to 10 in the span of a few minutes. There is no ratcheting up little by little. If I don’t stop using my eyes, I will be in trouble. The pain will be out of control.

In my 42 years of living with this pain, at no time did a doctor ask me to explain how my pain works. They ask, “What kind of pain is it? How does it feel?” and so on, but never, “Can you let me know how you rate your pain so we will be talking the same language?”

How we communicate our levels of pain is often the decisive factor in the treatments and medications offered, dosages and the kind of opioid prescribed.

But if we don’t speak the same language, how can we understand each other? How can the proffered treatments or doses be what we need?

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.”  Carol is the moderator of the Facebook support group “Women in Pain Awareness.”

Is Your Pain Tolerable?

By Pat Anson, PNN Editor

There has long been controversy over the way pain is measured by healthcare providers. Critics say the two most widely used methods, the numeric 0 to 10 pain scale and the Wong Baker Pain Scale, are too subjective because they rely on patients to self-report their pain levels.

Some even claimed that asking patients about their pain encourages excess opioid prescribing. There was never any evidence to support that argument, but in 2017 the Centers for Medicare and Medicaid Services (CMS) caved into political pressure and dropped three survey questions that asked Medicare patients about the quality of pain care they received in hospitals.   

A new method of measuring pain is now being proposed, one that is designed to reduce opioid prescribing and other pain treatments. It hinges on a simple question:

“Is your pain tolerable?”

In a new study published in JAMA Network Open, researchers say asking patients that question could help doctors decide whether opioids and other treatments are really necessary.

"Because of concerns about overtreatment of pain with opioids there has been an enormous effort to rethink how we ask patients about pain," says lead author John Markman, MD, director of the Translational Pain Research Program at the University of Rochester Medical Center.

"Knowing that patients consider their pain to be tolerable, physicians wouldn't necessarily prescribe a medication with serious risks or expose them to surgery.”

Markman and his colleagues asked 537 primary care patients if their pain was tolerable, and then had them rate the intensity of their pain on the 0 to 10 scale.

Most patients who had mild pain (a score of 1 to 3) or moderate pain (4 to 6) said their pain was tolerable. Even with a severe pain score of 7, nearly 40% said their pain was tolerable. But after that, at level 8 or higher, severe pain becomes less and less tolerable.

JAMA NETWORK OPEN

“Our findings confirmed the intuitive assumption that most patients with low pain intensity find their pain tolerable,” Markman wrote. “In contrast, the tolerability of pain rated between 4 and 6 varies substantially among patients. In this middle range, if a patient describes pain as tolerable, this might decrease the clinician’s inclination to initiate higher-risk treatments.  A substantial subgroup of patients with severe pain reported their symptoms as tolerable.”

One weakness of the tolerable question is that it measures pain at a single point in time – and chronic pain patients often experience flares that can make their pain intolerable. It also assumes that every patient is alike and has the same level of tolerance.

Markman says numeric pain scales have "very little relevance" when patients who have lived with chronic pain for several years visit their doctors.

"If, instead, a patient could say 'my pain is tolerable when I'm doing this but intolerable when I'm doing that,' and it's in the context of that patient's life, I frankly think that's much more useful, and is what doctors really want to know," Markman said.

"In order to transform how we treat pain to make treatments safer and more effective, we need to start with a reformation in how we ask patients about pain."

The Tyranny and Tragedy of Pain Scales

Bu Janice Reynolds, Columnist

When the Joint Commission issued its first pain standards, they recommended that pain should be assessed on a regular basis and encouraged providers to ask patients a simple question: “Are you in pain?”

The Veterans Administration then had the bright idea to use a numerical pain scale to assess pain, as well as making pain the “5th Vital Sign.”  Other organizations followed like lemmings and eventually it was felt by most to be mandatory.  This was very wrong and damaged people in pain immensely.

Pain scales were never meant for this purpose. They originated and were validated in research projects, but wound up being incorporated into the assessment of pain.

Assessment requires many other questions besides the simple “Are you in pain?”

How does your pain feel now? What word would describe your pain? How long does it last? When does it occur? What makes it feel better or worse? And so on. 

The original question was supposed to lead to an actual assessment of pain and whether a person was having any. Then it was intended that the pain be addressed.  Pain scales are based on the premise that “pain is what the person says it is, existing when they say it does.”

Pain is subjective, it can never be objective.  The best use of a pain scale is before and after an intervention to ascertain whether the intervention was effective.

There are many different pain scales. The visual analog scale is a line where a patient selects a point on the line to represents where their pain is. Numerical rating scales typically rate pain on a scale of 1 to 10, while a vertical scale uses a 1 to 10 “thermometer” that has been shown to work best with older adults.

There are also face scales and behavioral scales -- like the one below -- which are used for young children or when adults are unable to communicate.

With the current madness over pain medication, an attempt is being made to make the scales more objective, so we have physicians and even patients designing their own scales. One very scary one designed by a woman with fibromyalgia (and of course loved by some providers) actually says “10 – Unspeakable pain. Bedridden and possibly delirious. Very few people will ever experience this level of pain.”

As a pain management nurse and someone living with pain, I emphatically call these made up scales quackery.

Unfortunately, pain is not always quantifiable, especially persistent pain.  Even a functional scale (based on how well you are able to function and do activities of daily living) is not always useful or believed. I remember telling a surgeon a patient rated her pain a 10 on a scale of 1 to 10.  His parting comment was, “If her pain was really 10/10, she would be dead.”

One of the results of using numerical rating scales is a further lack of response in acknowledging pain and treating it.  It has become a routine to ask if you are having pain and to put a number on it, but rarely does it result in further assessment, diagnostic tests, or actually doing something about the pain, even if you rated your pain a 10. 

The people asking the questions often have little idea about how to use a rating scale and become frustrated. I remember a nurse telling a developmentally challenged woman who could not use a scale that she needed to learn how. 

The last time I saw my neurologist, a nurse asked me to rate my pain. So I said, “Are you asking about my skull, my foot, or my hip?”  This of course flustered the nurse, who replied, “Which ever one the doctor is treating you for.” I told her, “He doesn’t treat any of my pain, I am seeing him for a seizure.” 

I eventually took mercy on her and gave her a “number” for my skull pain. But, like 99% of numbers reported in a screening, it was useless.

Pain terrorists (a phrase I use to describe opioiphobics and people biased against pain sufferers) are claiming pain scales have contributed to or even caused the “opioid addiction crisis.” I have also heard claims the scales were created by pharmaceutical companies to increase their sale of opioids and that they have allowed false claims of pain to proliferate.

When a group of U.S. senators submitted a letter to have questions about pain removed from Medicare quality of care surveys, they claimed too many doctors were prescribing opioids so that their hospitals would get good ratings. Sen. Susan Collins was quoted as saying “there is no objective diagnostic method that can validate or quantify pain” and that patients were not the best judge of how good their pain management is. This essentially denies that pain exists when a person says it does.

The bottom line is the use of pain scales to identify pain has been both a tyranny and a tragedy.  

It's a tyranny because it forces people to use a scale that was never designed for that purpose, which blames them for problems associated with using them, and allows pain terrorists even more ammunition for fear-mongering.

It’s a tragedy because it has contributed to the erosion of the art and science of pain management, and increased the damage to people suffering in pain.

Janice Reynolds is a retired nurse who specialized in pain management, oncology, and palliative care. She has lectured across the country at medical conferences on pain management and has co-authored several articles in peer reviewed medical journals.  Janice has lived with persistent post craniotomy pain since 2009. 

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

What Does Your Pain Feel Like?

By Pat Anson, Editor

Does your chronic pain feel like you’ve been hit with a hammer, a bad sunburn that won’t go away, or ants crawling under your skin?

Those are some of the choices patients have in a new campaign launched in Ireland to change the way patients describepain to their physicians.   

Accurately assessing pain is difficult because pain is so subjective. For many years doctors have relied on various versions of the Wong Baker Pain Scale – a series of sad and smiling faces a patient chooses from to help their doctor understand how much pain they are in. The scale is so simple it was originally developed for children, but is now used around the world for adults.

The “Mypainfeelslike…” campaign aims to improve on that method by using more descriptive images and phrases to help doctors understand and diagnose their patient’s pain. The campaign focuses on neuropathic pain, but can be used for many other types of chronic pain. The initiative is sponsored by Grunenthal Group, a German pharmaceutical company.

Instead of an unhappy face, patients can choose from a dozen images, ranging from a burning flame to a rope tied in knots to a set of ice cubes. They also fill out a questionnaire and select different phrases to describe their pain, such as “a hot iron on my skin” or “a volcano erupting.”

Patients are also asked to fill out a questionnaire to select different phrases to describe their pain, such as “a hot iron on my skin” or “a volcano erupting.” And there's a list of multiple choice answers to describe how pain affects their ability to work, exercise and socialize.

It may take a few minutes to complete the questionnaire, but the idea is to get patients to “invest more time and accurateness in thinking about their symptoms, describing them more precisely, and preparing for doctors’ appointments.”

“Doing so forces us to reconsider our chronic pain, and the different ways that we feel it. This improves our self-awareness, allows us to better communicate our situation, and helps us get the most value out of the very short time that we usually have during doctors’ appointments,” the website says.

To take the questionnaire, click here.

According to a survey by Grunenthal, over half of Irish pain sufferers feel frustrated when trying to communicate their pain to a doctor. Over a quarter say they delay discussing their pain because they’re not sure how to do it.

“Living with chronic or nerve pain affects people’s well-being, their ability to be independent, their productivity and relationships, which can lead to feelings of depression," John Lindsay, chair of Chronic Pain Ireland told the Irish Independent.  “The ‘Mypainfeelslike…’ campaign will help raise awareness of the impact of chronic pain and give people living with this disease the tools to re-evaluate their pain management plans.”