A Patient’s Guide to Understanding Rheumatoid Arthritis Pain

Living with RA doesn’t have to mean living with pain. Learn more about RA pain and start tracking your symptoms today.

About CreakyJoints

A Patient’s Guide to Understanding Rheumatoid Arthritis Pain was made possible with support from Sanofi Genzyme, a global biopharmaceutical company dedicated to supporting people through their health challenges.

CreakyJoints is a digital community for millions of arthritis patients and caregivers worldwide who seek education, support, advocacy, and patient-centered research. We represent patients through our popular social media channels, our website CreakyJoints.org, and the 50-State Network, which includes nearly 1,500 trained volunteer patient, caregiver and healthcare activists.

As part of the Global Healthy Living Foundation, CreakyJoints also has a patient-reported outcomes registry called ArthritisPower® with nearly 25,000 consented arthritis patients who track their disease while volunteering to participate in longitudinal and observational research. CreakyJoints also publishes the popular “Raising the Voice of Patients” series, which are downloadable patient-centered navigational tools for managing chronic illness. For more information and to become a member (for free), visit CreakyJoints.org. To participate in our patient-centered research program, visit ArthritisPower.org.

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Part of the Global Healthy Living Foundation.

The contents of this website are for informational purposes only and do not constitute medical advice. CreakyJoints.org is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of a physician or other qualified health provider with any questions you may have regarding a medical condition.

Why Is Rheumatoid Arthritis (RA) Painful?

When you have RA, your immune system, which is supposed to protect against germs and foreign invaders, turns against the body and starts attacking the joints — and that hurts.

“Inflammation is the root cause of RA pain,” says Elizabeth Schulman, MD, a rheumatologist at Hospital for Special Surgery in New York City. “The joint lining can get inflamed, thickened, and irritated, which causes pain and swelling and stiffness in the joints.”

RA pain can also be caused by joint erosion and damage or could be due to co-occurring conditions that also cause pain. If you delay treatment, or your medication isn’t working well enough, and RA inflammation persists, it can cause permanent damage to the joints, explains rheumatologist Angus Worthing, MD, a clinical assistant professor of medicine at Georgetown University Medical Center in Washington, D.C. “Once a joint is damaged, even if the inflammation is controlled, it’s uncommon for that damage to repair and the pain might persist long-term,” he adds.

Keep reading to learn more about:

• The Difference Between Rheumatoid Arthritis Pain and a Rheumatoid Arthritis Flare
• Monitoring and Discussing Rheumatoid Arthritis Pain
• How Rheumatoid Arthritis Medications Treat Pain

Is RA Causing Your Pain, or Could It Be Something Else?

How to Talk to Your Doctor About Your Pain

Communicating your RA pain clearly and honestly with your rheumatologist can make sure you get the care you need to manage (and minimize) your pain.

To help make it easier, we asked top rheumatologists what they want to know when it comes to helping patients manage their RA pain. 

Keep this handy list nearby during your next telehealth visit, or bring it with you to your next in-person visit:

1. Where is your pain?
   
2. What is your personal pain scale?
3. Is pain interfering with your daily living?

If you have low levels of inflammation and few swollen joints but are still experiencing pain, it could be due to a co-occurring condition rather than your RA. Here are some other health issues that you may mistake for RA pain.

Click each image to expand it.

Track Your RA Pain with ArthritisPower

It’s important that your doctor knows how your RA is impacting your everyday life. But RA symptoms can come and go — you may feel fine this week, but did poorly last week. ArthritisPower helps you track your RA over time.

When you sign up for ArthritisPower, you can select different health assessments, such as pain and fatigue. It’s up to you to determine how often you want to take them (say, weekly or monthly). When you have your next doctor’s appointment, you can discuss your latest assessment results with your doctor.

By joining ArthritisPower, you will also be contributing to important arthritis research. Your data will be de-identified and studied to help improve care for all people living with arthritis.

If you’re in chronic pain, your rheumatologist wants to know. “When a patient has had sustained disease activity over weeks or more, that indicates that the current regimen is failing and a different medication should be considered,” says Susan M. Goodman, a rheumatologist at Hospital for Special Surgery (HSS) in New York City.

Your RA medication might have been effective in controlling your joint pain and inflammation, but it may not continue to work forever. If the inflammation persists, it can cause permanent damage to the joints.

“Once you get damage to the joint, there is no way back,” says Leah Alon (Nichols), MD, a rheumatologist in New York City. Learn more about signs you may need to change your medication — and what to expect.

Should You Consider Changing Your RA Medication Because of Your Pain? 

When to Contact Your Doctor About Your RA Pain

It's important that you alert your doctor if you’re experiencing pain, and a telehealth appointment is a good first step.

While your rheumatologist won’t be able to physically touch you, they can have you bring your joints to the camera to inspect for swelling; guide you to press the joints to check for tenderness; and assess mobility by asking you to make a fist or mimic like you’re writing.

Keep reading to learn more about:

• How Doctors Assess Rheumatoid Arthritis Pain During a Telehealth Visit
• What to Tell Your Doctor During a Telehealth Visit About Your Pain
• When You Need Telehealth vs. an In-Person Visit