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

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

RA inflammation doesn’t just affect the joints, it can affect organs including your heart and lungs, too.

Getty Images; Shutterstock

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, 46, of Tampa, Florida, learned when she found out she had rheumatoid arthritis at age 43. Her initial reaction that she was too young to get RA is typical, says rheumatologist Rebecca Manno, MD, assistant professor of medicine in the division of rheumatology at Johns Hopkins University in Baltimore.

RELATED: 9 Secrets Only People Living With Arthritis Pain Know

Many people think of RA as an older person’s disease, perhaps confusing it withosteoarthritis. The reality is that it 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, 57, of Somerset, New Jersey. She was diagnosed 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. Still, there are ways to prevent RA flares:

  • 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

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.”

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, and gastroenterologist. “I call them my ‘ologists,” she jokes.

RELATED: How I Chose My Rheumatologist

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.

5. Wise Use of Social Media and Support Can Help

One thing that Deb Constien, 46, of Sun Prairie, Wisconsin, learned is that you can post a message on social media and get help — sometimes instantly. Constien, who was diagnosed with RA at age 14, might say, “Hey, I’m trying this new medication, anyone have experience with it?”

Fritz agrees. She often goes on the CreakyJoints website, an online community of more than 75,000 people with all forms of arthritis. “My family is very empathetic, but sometimes they don’t know what I should do,” she says. Her online friends, on the other hand, speak from experience.

6. RA Affects Your Friends and Family, Too

“I didn’t anticipate how much RA would impact my family and friends,” Fritz says. “A lot of the impact is related to my fatigue.”

Instead of soldiering through painful RA flares like she used to, she says she’s become more honest. If she’s having a flare or is very fatigued, she begs off social events and reschedules. And her honesty is lovingly repaid in other ways: Her children, for example, knowing she’s having a flare, will help her out by getting her heating pad or assisting around the house.

7. Setting Limits Is Crucial for Your Health and Well-Being

Like many with RA, Constien has work and family responsibilities. She’s found that learning when to limit requests on your time and energy can help in the long run. Her son’s high school has a huge benefit each year, for instance, and when they asked her to chair the procurement committee — which involves a lot of work in soliciting donations from merchants and others — she compromised.

“I said, ‘I’ll help, but not chair it,'” she says. And she did much of the work online — another energy saver. “I made my role smaller than what they asked,” she says, yet she had the satisfaction of helping, and they had one more willing worker.

8. Trust Your Instincts

Dr. Manno has some helpful hints for the newly diagnosed: ”Everyone is going to offer you free advice about RA,” she says, but you shouldn’t “assume the rest of the world knows anything about RA.” Instead, work with your healthcare team to get the best advice.

She also offers this bottom-line advice: Trust yourself and your instincts. “If you have RA, you’re already an expert. You know a whole lot more than most of the population.”

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