Words Matter When Talking About Pain With Your Doctor | Connecticut Public Radio

Words Matter When Talking About Pain With Your Doctor

Jul 23, 2018
Originally published on July 27, 2018 9:30 pm

If you're in the hospital or a doctor's office with a painful problem, you'll likely be asked to rate your pain on a scale of 0 to 10 – with 0 meaning no pain at all and 10 indicating the worst pain you can imagine. But many doctors and nurses say this rating system isn't working and they're trying a new approach.

The numeric pain scale may just be too simplistic, says Dr. John Markman, director of the Translational Pain Research Program at the University of Rochester School of Medicine and Dentistry. It can lead doctors to "treat by numbers," he says and as a result, patients may not be getting the most effective treatment for their pain.

Take the case of 33-year-old Adam Rosette, who was recently hospitalized for fibrous dysplasia, a bone disorder that made it nearly impossible for him to chew or even speak. After brain surgery to remove benign tumors related to the disorder, he was definitely in pain. But he was reluctant to label the pain too high.

"I don't think I ever answered higher than a '7' because an '8' would be, in my mind, like I'm missing half of my body or a limb," he recalls.

On the pain scale a rating of 4 to 7 is considered moderate. Mild pain is rated 1 to 3. Over 7 is considered severe.

Today, Rosette has recovered and is pain-free, but he wonders if "low balling" his pain level while in the hospital, meant he wasn't given adequate pain medication.

"You realize you got less medicine and it's been eight hours and they're not allowed to give you more for a while," Rosette says.

If your doctor gets the wrong idea about your pain, it's not just going to affect your comfort — it can affect your treatment. Markman says that especially after an injury, there's therapeutic value to keeping the pain tamped down, so that you can keep up with physical therapy.

For chronic pain, being clear can help clinicians choose the right mix of therapies or medications to allow you to stay as active as possible. And staying active can help manage chronic pain, says Dr. William Maixner, with Duke University School of Medicine and current president of the American Pain Society.

Exercise, he says, "causes the release of a number of anti-inflammatory substances from the muscle that can help diminish pain and pain processing and make the individual more resilient."

To find out more about how the numerical pain scale was affecting treatment, Markman and colleagues at the University of Rochester did a study, which they will present at the World Congress on Pain in Boston in September. The research analyzed data from other studies, which asked chronic pain patients to rate their pain using both numbers and words.

Patients were asked to rate their pain on a scale of 0 to 10, and they were also asked the question, "Is your pain tolerable?"

Surprisingly, three-quarters of the patients who rated their pain between 4 and 7 on the numerical scale, a range that typically calls for higher doses of medications, also described their pain as "tolerable" — a description that normally means no more pain treatment is needed.

This showed the danger of relying only on a number, Markman says. "If you were just treating by the numbers you might say, 'Well, someone has a pain that is 6 [out of]10. I feel obligated to do something about that ... to fix that number just like you might fix their blood pressure or their blood glucose,' " he says.

If clinicians just look at a number, Markman says, they may be more likely to over-treat or prescribe more medication, which can be worrisome during an era of concern about opioid abuse and addiction.

So if today's pain scale isn't working well for patients and doctors, what's the alternative?

Many health care providers are trying to come up with a system that involves words, not numbers.

"I never look at just the pain scale," says Dr. Chrystina Jeter, an anesthesiologist and pain management specialist with UCLA Health, who was Rosette's doctor.

Using words to describe pain brings greater specificity to the measurement of pain, says Maixner.

If patients can describe their pain precisely, he says, their appointment with a health care provider will be much more focused, allowing the physician to "come to a decision about treatment in a much more rapid and logical way."

Here's advice for the next time you need to talk to your doctor about your pain.

Get descriptive: use metaphor and memoir

You can help doctors understand just how debilitating your pain is by being more descriptive.

"It's perfectly OK to be a little more flowery in the description of pain," says Jeter. "My pain is aching, burning. What does it feel like to you? Where is it? Does it move?"

Jeter typically asks patients to compare their current pain to the worst pain they ever had, such as childbirth or kidney stones. This helps put their pain in context, she says, and may help them realize their pain may not be that bad after all.

Describe your day

It can be helpful to talk about how your pain waxes and wanes throughout the day, says Jeter. For example, is it mostly when you eat, walk, or do certain activities?

"I look for trends over time and I look at their function," she says.

Talk about function, not feeling

Be clear about how your pain interferes with daily activities, such as getting out of bed early, getting dressed, feeling fatigued, or no longer enjoying getting out with friends, suggests Maixner.

Thinking about function is key, agrees Markman. He says the most accurate measurement of pain may be what it prevents patients from doing. For example, if a patient cannot chew or talk, walk, or exercise that might be more disturbing to them than the pain. Sometimes it's more useful to seek ways to "work around the pain" rather than "making it go away," Markman says.

Share your treatment history

Describe the history of the pain, the location, how long it's been hurting and what factors seem to aggravate it, or help it get better, suggests Maixner.

Share other treatments you've sought, such as acupuncture, massage and certain medications, he says. "Let the doctor know what you've done and whether it was effective."

Family history is also important, he says, especially when you consider much of an individual's pain sensitivity is inherited. If your parents were highly sensitive to pain, chances are you will be, too, he says.

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If you go to the doctor with a painful problem, you will likely be asked to rate that pain on a scale of zero to 10, with zero meaning no pain at all and 10, the worst pain imaginable. But many doctors and nurses say rating by numbers isn't working, and patients may not be getting the proper treatment for their pain. NPR's Patti Neighmond reports.

PATTI NEIGHMOND, BYLINE: Thirty-three-year-old Adam Rosette knows the numeric pain scale quite well. He suffers a painful bone disorder.

ADAM ROSETTE: It's a tricky question - what your pain level is.

NEIGHMOND: Just over a month ago, Rosette had brain surgery to remove benign tumors that stopped him from chewing or speaking. He was in severe pain but felt uncomfortable rating it too high and never rated it over a seven.

ROSETTE: Higher than that is, like, oh, I'm missing half of my body or a limb or something, you know? And I wasn't in that level of pain.

NEIGHMOND: But he wonders if lowballing his pain level meant he got less medication to control it.

ROSETTE: The medicine wears off and you realize you took less medicine and it's been eight hours and they're not allowed to give you any more for a while.

NEIGHMOND: Now, full disclosure, I was recently in the same boat. I was in the hospital for back surgery and I also lowballed my pain. I know patients in pain need medication, but I've done lots of stories about opioid addiction and was very wary of getting too much medication. Neurologist John Markman with the University of Rochester says the numeric pain scale may just be too simple and may lead to both over- and under-treatment.

JOHN MARKMAN: The focus on pain intensity has led to a sort of paint-by-numbers, if you will, or treat-by-numbers approach.

NEIGHMOND: Instead of focusing on the intensity of pain, Markman says it might be more useful to also look at what the pain is preventing the patient from doing. Can they walk, exercise, focus? Is the pain preventing them from sleeping?

MARKMAN: The way it interferes with particular activities are really what should be the focus of trying to treat them and take care of them because that's what's most important to them.

NEIGHMOND: Markman recently did a study analyzing data from patients who rated their pain by the numbers but also answered this simple question.

MARKMAN: Is your pain tolerable?

NEIGHMOND: It turned out three-quarters of the patients in the study who rated their pain as moderately intense - four to seven on the pain scale, a range typically resulting in higher doses of medication - also described their pain as tolerable, a description that normally means no more pain treatment is needed.

MARKMAN: If the patient tells you my pain is a six but, you know, I understand that I have osteoarthritis and I'm accustomed to it, and it's tolerable for me, it changes the discussion you're having with them to, well, what's making it tolerable for you? How are you able to work around it? Rather than thinking, well, I need to give them something or do something for them to reduce that number.

NEIGHMOND: Markman says this is why it's important not to rely only on a number.

MARKMAN: If you were just treating by the numbers, you might say, well, someone has a pain which is a six over 10, I feel obligated to do something about that to reduce that number, just like you might try and fix their blood pressure or their blood glucose.

NEIGHMOND: Now, pain is subjective. Dr. William Maixner, president of the American Pain Society, says people respond to pain differently.

WILLIAM MAIXNER: Everyone has sort of their own internal gauge with respect to how they perceive pain.

NEIGHMOND: So Maixner says patients need to be really descriptive when talking with their doctor about pain. UCLA pain management physician Dr. Chrystina Jeter agrees. She says, the more words, the better.

CHRYSTINA A. JETER: It's perfectly OK to be a little more flowery with your description of your pain. My pain is aching, it's burning. What does it feel like to you, you know? Where is it? Does it move? It's helpful for us, as health care professionals, to triage your pain and assess, how severe is this? How aggressive do I need to be?

NEIGHMOND: And Jeter says, share with your doctor anything that's helped reduce your pain in the past - massage, acupuncture, exercise. All these details will help your doctor come up with the most effective treatment for your pain. Patti Neighmond, NPR News.

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