Hose (pronounced “Hosie”) Cruise of San Francisco lives with the pain of arthritis, multiple sclerosis, and fibromyalgia. She recently fell and broke a rib. It’s hard to explain to doctors how it all feels.
“I have to be able to describe the type of pain and where it is,” she says, “instead of just saying, ‘It hurts here’ or ‘It hurts all over.’ Is it just pain when I press on it? Is it muscle pain, is it joint pain? I’m trying to learn how to describe it better.”
Pain is hard to talk about and hard to make people understand. Communication problems make things trickier for doctors, patients, and families. Steven Richeimer, M.D., chief of the division of pain medicine at the University of Southern California, tells patients, “Speak up. Try not to be shy about your pain. Doctors have no other way to measure or understand it other than the description you provide.”
The kind of pain you’re feeling can say a lot about its cause. “The more articulate someone can be, the more it helps a doctor in terms of diagnosis and sometimes treatment,” says Karen Burt-Imira, M.D., recently retired head of the Department of Integrative Medicine at Contra Costa Regional Medical Center in Martinez, California. “If we can’t understand it, we’ll have to order more tests, which can be unpleasant, time-consuming, and costly.”
Richeimer, author of Confronting Chronic Pain (Johns Hopkins University Press, 2014), reports a case of a man named Tom with back pain radiating down to his foot. He was treated for months for sciatica, without relief. When he got to Richeimer’s clinic and carefully described what he was feeling, the doctor examined him and realized the back pain was a minor problem. What needed treatment was arthritis in his foot. A thorough discussion of Tom’s symptoms could have saved him a year of suffering.
Why pain is hard to talk about
“It’s very hard to talk about pain,” says Patricia Monagle of San Diego, who has rheumatoid arthritis, lupus, and polymyalgia rheumatica, another inflammatory disease. “I don’t want to discourage people. People are hoping the best for you, and you don’t want to disappoint them. There have been times I didn’t tell the doctor the truth when a treatment didn’t work, because I didn’t want to hurt the doctor’s feelings.”
Sometimes people don’t talk about pain because it’s so unpleasant to think about. Paul Williams, who is currently in extended care because of severe leg pain, says, “Doctors and nurses ask me about my pain all the time. I get so tired of that. I don’t want to seem like I’m complaining or whining, and I don’t want to bring people down. So I often downplay how much pain I’m in.”
Richeimer says patients’ reluctance to talk is a problem. “Tell your doctor how you truly feel or what you really want him to know,” he says, “instead of what you think he wants to hear.”
Another block to pain talk is not having the words to describe it. Cruise says, “I have to be able to describe the type of pain. Is it soreness, is it stabbing, throbbing, burning, tingling, hot, pins and needles? You have to get in touch with your body; you have to know how to describe your pain.”
The Arthritis Foundation pamphlet “Speaking of Pain” lists other adjectives that might help medical providers understand your pain: aching, searing, sharp, shooting, pounding, gnawing, cramping, dull, blinding, and piercing. Some are more typical of muscle pain, some of inflammation, others of injury, others of nerve pain, others of infection.
About 60 other adjectives are used to describe pain, many of which are listed below. Some conditions such as cancer may cause several different types of pain.
Sometimes a simple adjective doesn’t describe your pain. You might want to paint a word picture to describe what it’s like. Cruise describes her leg spasms this way: “It’s like my entire leg comes on fire; all my muscles get tight.” Williams, to explain his leg pain, told a doctor, “Imagine I’ve got a pliers around your ankle and I twist your foot halfway around. It’s like that.” You might say, “It’s like someone’s squeezing my shoulder in a vice,” or “It’s like something is scraping across the inside of my chest,” or whatever comes to you as a description.
Doctors also want to know what relieves your pain and what makes it worse. Does movement help or hurt? How about rest and medication? What activities are most painful? They might want a history of the pain: how long you’ve had it, what seemed to bring it on, how it’s changed over time. Tell them what is going on that brings you in to their office now.
According to the Arthritis Foundation, you’ll want to explain where the pain occurs in your body, how often it comes, how long it stays, and what times of day it’s usually the worst. Does it move around or stay in one place? Does it come and go (intermittent pain), or is it constant?
To communicate well with your doctor, you’ll need to prepare these answers. Write them down. Maybe even draw a picture.
Pain specialist Jennifer Schneider, M.D., Ph.D., author of Living with Chronic Pain (Hatherleigh Press, 2009) writes that how the pain limits your life can be an important description. “I can only stretch my arm out this far.” “I can only walk for five minutes.” “I have trouble (bathing, dressing, lifting groceries, cooking, playing with my children).”
It might help to share with your doctor if you are depressed or fatigued, which are side effects of pain. “Pain, depression, and fatigue so often go hand in hand,” says Burt-Imira. “Pain is exhausting. It requires doing so much for yourself, constant vigilance. The whole body has to readjust itself and can tense up. Pain can cause tension all over the body, which wears you out.”
Clinical psychologist Patty Hennigan, Ph.D., leads support groups for people with chronic pain. She advises patients to prepare for their medical appointments. “We encourage people to think ahead about what they want out of their doctor visits — information, advice, a treatment plan, etc., and to clearly ask for it,” she says. “Doctors aren’t mind readers. We also talk about prioritizing questions for the visit. Write down the most important questions to ask first.”
Language or cultural differences
It is much harder to describe your pain if the doctor does not speak your language or share your culture. Many people don’t know pain words in their own language, much less someone else’s. Studies show health-care professionals tend to underestimate pain in people of ethnic groups different from their own.
If you are suffering pain and aren’t confident of your ability to express it, you might want to bring someone with you to help translate or ask for a nurse or doctor who speaks your language. The Department of Health and Human Services requires that providers who receive Medicaid or Medicare funds must provide language assistance to patients with limited English.
The quality and availability of translation services vary greatly. Even if translators are available, they may not know your dialect or the pain words you learned from your family. Try to confirm that they actually understand what you’re saying. If all else fails, download an app such as Google Translate or iTranslate to help you find words or understand a doctor.
Understanding what a doctor says can also be a challenge. Even in the same language, health-care professionals speak a dialect all their own. A blogger named Carrie on autostraddle.com wrote about physical therapists telling her that she had “increased anterior pelvic tilt, shortened hip flexors, and decreased lumbar lordosis,” none of which helped her understand what was going on.
Schneider tells her patients: “Ask for doctors to restate in plain language things that you don’t understand.” You can ask them to draw a picture; you can ask for printed educational materials or websites you can visit. You might want to have someone with you at an appointment to listen for you when you’re too stressed. They might also speak up for you if you’re holding back. You say you’re doing pretty well; your spouse might say, “Actually, doctor, she hasn’t been out of bed for a week.”
Another option: Record an appointment on a device. This will allow you to listen to the doctor again or get someone to help you understand what was said.
Using the pain scale
Health professionals will often ask you to rate your pain on a scale of 0 to 10, where 0 means no pain and 10 means “the worst pain you can possibly imagine.” OK, but what about all the other numbers; what do they mean? What’s the difference between, say, a 4 and a 7?
The pain scale is supposed to help others understand your pain level, but it’s a crude tool. Burt-Imira says, “Pain has so many more layers, the fears, the meaning, the associations with trauma. You can’t reduce it to a number. It’s oversimplified.”
“Intensity is not the only measure of pain,” she adds. “Some people get pain that is very intense, but it only lasts a few seconds. A less intense but longer-lasting pain might have much more impact on your life, but how do you convey that with a number?”
When asked to rate your pain, you might ask the doctor or nurse what she means. Does she want to know how it is right now, or how it’s been for the last few days? Is she asking how intense it is, or how it affects you? Your answer can help clarify your situation.
Seddon R. Savage, M.D., medical director of the Chronic Pain and Recovery Center at Silver Hill Hospital in Connecticut, evaluates pain this way: “I ask people to remember the worst pain they’ve ever experienced in their lives. It might be a kidney stone or childbirth. They can compare their current pain to that.”
Savage also asks patients to evaluate their pain over the last week and give their pain a number at its most severe, least severe, and average level.
The numbers don’t tell the whole story, because one person’s 4 is another person’s 6. Heck, one person’s 2 could be another person’s 8. Sometimes doctors use a visual analog scale of faces, from smiling to screaming in agony. Faces might be easier than numbers to match to your pain.
If pain makes it hard to fall asleep, wakes you up, or keeps you from doing things you need to do, it deserves a higher rating. If the pain fills you with fear about what it means for your health, or if it reminds you of the trauma that caused it, it will be worse, whatever its intensity.
Because every patient is different, you have to work out with your doctor what the pain scale means to you. Savage asks patients what an acceptable level of pain would be. “We probably can’t bring chronic pain down to zero,” she says. “But we can aim for a level that allows you a good quality of life.”
Karen Lee Richards, a health writer specializing in chronic pain, clarifies the pain scale in an article on Health Central: 1-3 is mild pain, “nagging, annoying, but not interfering with daily living activities.” 4-6 is moderate pain that “interferes significantly with daily living activities.” 7-9 is severe pain that is “disabling, leaves you unable to perform daily living activities.”
Talking to families about pain
“Pain is always personal,” says F. Michael Ferrante, M.D., director of the UCLA Pain Management Center in Los Angeles. “It’s invisible to other people looking at you, and that can lead to a lot of mistrust and difficulties in relationships.”
Psychologist Patty Hennigan says, “In our groups, I hear frequently that pain patients feel family members are frustrated or angry with them because they are not able to fulfill the same role functions as before.”
Communications skills can help your family and you. “Patients often need help in learning to set boundaries, say no, and ask for help,” says Hennigan. “As patients learn tools and skills, they often educate family members. For example, ‘I’m working on pacing my activities. Try to help me remember to take breaks while I’m doing X.’”
It may be appropriate to have some counseling with your family or to bring them to a support group.
Better communication leads to better care
Chronic pain has dozens of causes: diseases, traumas, disabilities, stresses, psychological factors, and more. It also has many different categories of treatment. To decide on the best approach, you and your doctors need to understand each other.
Chronic pain also puts stress on families and relationships. Since it’s invisible, it’s important to communicate it as accurately as you can. For everyone involved, pain is difficult to talk about, but it’s worth the time and effort to learn how to do it.
Language makes a difference. Of her most recent visit with a pain specialist, Hose Cruise happily reported, “I used some of the words you asked me about, and she paid close attention. She was really listening to me!”
Words to Describe Pain
Aching: A long lasting, not too serious pain. Typical of tired or injured muscles.
Agonizing or excruciating: Very bad, you can’t think about or do anything else. 8-10 on the pain scale.
Burning: Like you were touching something hot. Typical of some infections and some nerve pain.
Cramping: Comes on suddenly, feels like your muscles or intestines are tightening painfully.
Dull: Like an ache, but not necessarily in muscles.
Gnawing: Persistent dull pain, similar to hunger pains.
Pins and needles: Mildly painful feeling like you get when you sit on a foot or hand and it “falls asleep.”
Pounding: Like something is beating on you inside.
Pressing: Like something is squeezing you or sitting on you.
Radiating: Pain seems to flow from a central hurt to somewhere else, like down an arm or leg, or front to back.
Sharp or stabbing: Comes quickly, feels like being stuck with something sharp.
Shooting: Sudden, severe pain that moves through the body.
Stiff: Usually in muscles or joints, hurts to move or can’t move freely.
Throbbing: Gets worse and better in a rhythm, often with your heartbeat.
Tight: A body part feels like it’s being squeezed.
If these adjectives don’t give a full picture, describe your pain with an analogy: “It feels like….”
Find more words on the website of the Edmonton Nerve Pain Association.