8 Things I Didn’t Know About Rheumatoid Arthritis Until It Happened to Me

These insights may help you understand and manage your rheumatoid arthritis.

Rheumatoid arthritis (RA) can come out of the blue or be diagnosed years after it’s first suspected.

Either way, when you or a loved one is diagnosed, it can be confusing and overwhelming to realize how much there is to learn about the disease and its treatments.

Here, people living with RA share what they learned soon after diagnosis.

1. You’re Not Too Young to Have RA

That’s what Shelley Fritz, 51, of Kauai, Hawaii, learned when she found out she had rheumatoid arthritis at age 42. Her initial reaction that she was too young to get RA is typical, says rheumatologist Rebecca Manno, MD, adjunct assistant professor of medicine in the division of rheumatology at Johns Hopkins University in Baltimore.

Many people think of RA as an older person’s disease, perhaps confusing it with aged-related “wear and tear” osteoarthritis. The reality is that RA can strike much younger, even in young children and teens. Juvenile arthritis, the most common type of arthritis in kids under age 17, occurs in about 50,000 kids in America. In women, RA is most commonly — but not always — diagnosed between ages 30 and 60.

2. RA Flares Can Occur All Over Your Body

“It’s like you wake up and think, What is going to hurt today?” says Kathleen Hoffmann, 62, of Keansburg, New Jersey. She was diagnosed with rheumatoid arthritis in 2008.

“One of the most interesting [areas for me] is my jaw,” she says. And having RA symptoms in her jaw was a challenge. “I couldn’t get my teeth to meet.” But just knowing that RA pain can move around the body can help keep you from freaking out.  

Some people don’t realize that because RA is a systemic inflammatory disease, it can affect the whole body — including the eyes, skin, kidneys, and heart. Taking care of your overall health is important to manage your RA disease and may help to reduce flares, which are episodes of joint pain, stiffness, or swelling. This includes these practices:

  • Using ice or heat to relieve aches and pains
  • Efficiently managing your time to reduce stress
  • Getting enough sleep to prevent fatigue
  • Eating a healthy whole foods diet

3. You May Be Able to Continue Working With RA

Fritz thought her RA diagnosis would mean the end of her career training teachers as a teacher educator, but it didn’t. While some days are tougher than others, she’s found work to be a kind of blessing.

“For me, work has been helpful both physically and emotionally,” she says. “Otherwise, I might dwell on my symptoms.” Fritz retired from teaching after 25 years and now works part-time from home, which she says has been a relief. “Doing so allows me to be more rested, less sick from viruses I would catch from school, and I have less pain now,” Fritz says.

If you find that RA is interfering with your work life, you might want to ask for accommodations at work. Under the Americans with Disabilities Act, you can request certain changes that will help you perform your job. For RA, this might include adaptive tools like an ergonomic chair or speech recognition software, or a closer parking spot to limit stress on your joints.

4. To Get the Best Care, Find a Team of Doctors to Work With

“I didn’t know how important it was to have a network of doctors,” Fritz says. At the moment, she has a cardiologist, rheumatologist, endocrinologist, pulmonologist, and gastroenterologist. “I call them my ‘ologists,” she jokes.

She learned from her healthcare team that RA is often accompanied by other conditions that doctors call comorbidities. For example, many people experience depression or anxiety as a result of their arthritis; working with a psychotherapist can help with this emotional impact of arthritis. RA also doubles your risk for cardiovascular disease, so it might be a good idea to work closely with your rheumatologist and cardiologist to monitor your heart.

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8 Things I Didn’t Know About Rheumatoid Arthritis Until It Happened to Me

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