Chronic pain is something that most people living with arthritis are all too familiar with. This article is the second of a three-part series on communicating about arthritis pain – one of the most common symptoms that impacts daily living and quality of life. Stay tuned for one more article to come. You can find the first article, Talking about arthritis pain in daily life here.
When you’re getting ready for an appointment with a healthcare provider to talk about your arthritis pain, it can feel overwhelming. You may have been waiting a while for the appointment. By communicating clearly, without getting tangled up in the emotions and frustrations of your experience, you can make the most of your appointment and make informed decisions about your care.
Before your appointment
Preparing for your appointment, whether it’s in person or virtual, is an essential step. Keep track of your daily symptoms, pain levels and medication history with tools from Arthritis Society Canada. You may want to gather this information in a binder, notebook or a digital file that you can bring to your appointment. This can help you remember what your pain has been like over time, especially if your appointment occurs after a flare or new symptoms.
Write down questions you would like to discuss—these could include “what did my test results show?” or “If my current treatment doesn’t work, what are my options?”— and list them in order of importance, because you may only have time to talk about two or three at one appointment. Consider the role of the healthcare provider as well. For example, a surgeon will be able to answer different questions than a physiotherapist.
Think about what your main goals are when it comes to arthritis pain management, and what your preferences are around your treatment plan. For example, maybe you want to make sure lifestyle changes are at the forefront of your management strategy. Perhaps you would like to flag how difficult it would be for you to travel to receive injections of medications in a specialized clinic, or that you may find it hard to remember to take pills every day. Together, you and your healthcare provider can find a plan that works for you.
If you’d like to have someone with you to be a second set of ears, ask if they can accompany you to the appointment. This can help to make sure that you’re understanding your healthcare provider’s recommendations and next steps. You can also ask if you can record the conversation.
At your appointment
The Canadian Arthritis Patient Alliance has several great tips on communicating with your healthcare team. To start, it doesn’t hurt to build a bit of rapport with your healthcare provider at the start of your appointment. Take a few moments to set a positive tone and create a sense of working together with positive and open language.
Tell your healthcare provider the main two or three points you’d like to discuss, and keep it short and as focused as possible, advises Dr. Andrea Furlan, a University Health Network physician and pain management researcher. When you’re talking about your pain, be specific. Dr. Furlan uses the “SOCRATES” method with her patients. That stands for:
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Site (Where does it hurt?)
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Onset (What were you doing when the pain started?)
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Characteristics (How does the pain feel to you?)
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Radiation to other sites (Does it go anywhere else in your body?)
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Associated symptoms (Are you having other symptoms?)
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Time (When did it start?)
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Exacerbations (What makes the pain worse or better?)
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Severity (What is the pain’s intensity?)
You can learn more about this approach by watching 8 tips from Dr. Furlan about talking to your doctor about pain.
Answering a question about a pain scale—that is, “how much pain do you have on a scale of 1 to 10?”—can be difficult, especially if chronic pain has become a normal part of your life. Answer that if your healthcare provider asks, but you can follow up by briefly talking about what your worst pain ever was, what your baseline is, and if that has changed. It’s also helpful to share how your arthritis pain affects your life and activities and if you’ve had to stop or change how you do things.
Dr. Mary Ann Fitzcharles, a rheumatologist and McGill University researcher with an interest in chronic pain in rheumatic disease, says that a pain scale isn’t always especially useful. “That really doesn't give us good information. We need to fully understand more about the pain.” She gives the example of how pain in the knee that comes only when standing up is totally different from someone who is lying in bed at night and can’t sleep because of a continuous aching in a knee joint. “Understanding the nuances of the pain is very, very important.”
Words to use
There are a variety of ways to experience pain and describing it can help your healthcare provider in their diagnosis or treatment plan. Here are some pain descriptors you may find helpful (adapted from Physiopedia’s summary of the McGill Pain Questionnaire):
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Throbbing
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Shooting
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Stabbing
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Sharp
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Cramping
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Gnawing
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Burning
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Aching
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Heavy
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Tender
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Splitting
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Tiring
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Sickening
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Fearful
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Punishing
Consider your lifestyle
Your healthcare provider may also be interested in talking about lifestyle issues, like weight gain or loss, activity levels and what you eat and drink, to find links to pain patterns. “We hope that our patients are going to be engaged in their healthcare, that they’re going to become partners in healthcare. So, if someone has bad knee pain, and following the pandemic has put on 30 pounds in weight and has not been able to exercise as previously—well, we want to understand this,” notes Dr. Fitzcharles.
Review the treatment plan
At the end of your appointment, briefly go over your healthcare provider’s treatment plan, including medication, exercise, stress management and diet, to make sure you’re clear on what you need to do. Bring up any concerns—for example, if you have had troublesome side effects with a particular medication in the past. Our post-appointment record can help you create a summary for your own files.
Living with arthritis pain can often make you feel powerless, but it’s a good idea to remember that you have the primary role in managing your health. “Recognize how you are central to your care—you’re the one who lives in your body, and a doctor is not going to necessarily know all those details unless you can explain them,” says Margaret Smit-Vandezande, an Arthritis Society Canada social worker. “And be honest—if you have a follow-up appointment, and you didn’t do what you had talked about doing together, just share what got in the way. Or if you feel like you’re leaving some pieces out, because you’re too embarrassed or shy to talk about that, think about other ways to give them the information that they need to know,” like writing it down rather than saying it out loud.
With these tips in mind, do your best to be thorough and clear to help your healthcare provider help you manage and relieve your pain.
In the final article in this series, you’ll learn about how healthcare providers answer tough questions about arthritis pain treatment options. You can also learn more about living with arthritis pain in our comprehensive Arthritis Pain Management Guide.