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What to Tell Your Rheumatologist About RA Pain Graphic

When you’re in pain, the last thing you may want to do is talk about it. Yet communicating your rheumatoid arthritis (RA) pain clearly and honestly to your rheumatologist — including where on your body you experience pain, how it feels, what brings it on, how long it lasts, what it prevents you from doing, and what, if anything, makes it feel better — can make sure you get the care you need to manage (and minimize) your rheumatoid arthritis pain.

We asked top rheumatologists what they want to know when it comes to helping patients manage their RA pain. Keep this handy checklist nearby during your next telehealth visit, or bring it with you to your next in-person visit.

1) Where is your pain?

The first thing your rheumatologist wants to know is the exact location of your pain. Is it on one or both sides of your body? Is it widespread beyond just the joints?  Don’t worry if you don’t know the exact name of the joints — just point to them and trace the path if the pain travels to other parts of your body.

2) What is your personal pain scale?

Your rheumatologist will likely ask you to describe your pain intensity on a scale of 0 to 10. But because may people with chronic pain have different perceptions of pain than people without pain, it’s important to put this in the context of your personal threshold for pain. For example, can you more or less function normally during a 3? Does a 6 make your reach for extra medication?

Your own pain scale can be very telling, especially as it’s tracked over time. “If you’ve been on effective rheumatoid arthritis medication and your pain scores continue to be high — 8, 9, or 10, it can mean something else is driving your pain,” says rheumatologist Alvin F. Wells, MD, PhD, director of the Rheumatology and Immunotherapy Center in Franklin, Wisconsin.

3) Is pain interfering with your daily living?

You’ll need to communicate the functional impact pain is having on your day-to-day life or your daily activities of living. “Sometimes function will tell me a lot more because you’ll see changes in function even if the patient isn’t describing pain,” says rheumatologist Grace C. Wright, MD, PhD, founder and president of the Association of Women in Rheumatology (AWIR).

For example, think about whether you’re able to do the following:

  • Get out of bed
  • Dress (close buttons, pull zippers, and tie your shoes)
  • Bathe (wash and dry your hair and body)
  • Go to work (get in and out of your car, bus, or train)
  • Engage in social activities
  • Exercise (walk two miles or participate in sports)
  • Shop and prepare meals
  • Do dishes (turn faucets on and off, bend down and reach to load and unload the dishwasher)
  • Do laundry (bend down to pick clothes off the floor)
  • Climb stairs
  • Sleep

4) How does the pain feel to you?

There is no one right word to perfectly describe your pain, but using language to convey your physical sensations can help your doctor identify the cause of your pain. For inflammatory pain (like that from RA), commonly used words include:

  • Throbbing
  • Aching
  • Sharp
  • Shooting
  • Hot
  • Burning
  • Grinding
  • Grating
  • Dull

Or you might opt for a more detailed description. Leah Alon (Nichols), MD, a rheumatologist in New York City recalls a patient telling her: “It feels like my hand is stuck in a metal glove in the morning.”

We asked CreakyJoints and Global Healthy Living Foundation members to share how they describe their pain. If any of these descriptors resonate for you, share them with your rheumatologist.

  • “Waking up feeling like my joints are going to shatter each time I move.— Julie W.
  • “Like my knees are filled with molten metal, my back has been beaten with a stick, and I’ve turned into the tin man.” — Kary B.
  • “Like someone heated barbed wire till glowing red and wrapped it around my hands and feet tightly.” —Linda K.
  • “Like a toothache in my joints.” — Cathy H.
  • “Like someone repeatedly hitting my fingers with a hammer.” — Wes L.

5) What makes your pain worse or better?

This information can be very telling for your rheumatologist, as it can help them figure out whether your joint pain stems from RA — or from something else, like osteoarthritis, fibromyalgia, tendinitis, or bursitis.

  • Is pain worse in the morning?
  • Does pain feel better with rest?
  • Is pain better after a hot shower?
  • Is pain worse after sitting for a long time?
  • Does pain occur after using the joint?
  • Is pain constant or does it ease for periods?
  • Is the area painful to the touch?
  • Does pain occur during specific activities, like standing from a seated position or using stairs?
  • Does pain increase with certain weather?

6) How are your medications working for you?

With so many RA treatment options available, there’s no reason to settle for something subpar. Don’t hesitate to let your doctor know if you suspect your treatment plan is not working or may have stopped working.

They can consider bumping up, changing, or adding to your treatment.

While you shouldn’t stop or adjust your medication dose on your own, if you have changed your medication regimen, you need to let your provider know.

Skipping doses of a disease-modifying drug, for example, could lead to painful RA flares.

7) How are you feeling emotionally?

If physical pain is taking a toll on your mental health — you feel anxious, nervous, sad, depressed, or can’t sleep — your rheumatologist needs to know. With this information, they can determine what additional treatments might be beneficial for you, including therapy or counseling, or taking medication to help ease depression or anxiety. They can also recommend online and online and local support groups of fellow patients with RA.

Keep Reading

Track Your RA Pain with ArthritisPower

ArthritisPower is a patient-centered research registry for joint, bone, and inflammatory skin conditions like rheumatoid arthritis. You can select different health assessments that matter to you, and choose how often you want to take them. When you have an upcoming doctor appointment, you can discuss your latest assessments and feel more informed. Learn more and sign up here.

This article is part of A Patient’s Guide to Understanding Rheumatoid Arthritis Pain and was made possible by a grant from Sanofi Genzyme. 

Interview with Alvin F. Wells, MD, PhD, rheumatologist and director of the Rheumatology and Immunotherapy Center in Franklin, Wisconsin

Interview with Grace C. Wright, MD, PhD, rheumatologist and founder and president of the Association of Women in Rheumatology (AWIR)

Interview with Leah Alon (Nichols), MD, rheumatologist in New York City