“Here’s How I Knew I Had Rheumatoid Arthritis”: A Patient’s Story Distinguishing the Symptoms

Rheumatoid arthritis is a systemic autoimmune condition that attacks the body’s own tissues, and that the World Health Organization suggests affects approximately 18 million people worldwide. Typically occurring in adults in their thirties to fifties, rheumatoid arthritis (often referred to as “RA” by people who are familiar with it) is three times more prevalent among women than men.

The roots of rheumatoid arthritis involve what happens both inside our cells and in the environment around us, leading to a variety of symptoms both in the joints and throughout the body. (The word rheumatism came from Greek health practitioners who believed fluid accumulated in the joints, though of course that’s not the accurate understanding we have today.)

Stephanie Tancer, MD, a board-certified rheumatologist with the Cleveland Clinic, explains that “there are genetic, epigenetic, and environmental risk factors for RA.” Specifically, Dr. Tancer highlights the role of genes known as Human Leukocyte Antigens (HLA), particularly the HLA-DRB1 alleles on chromosome 6, which help the immune system tell the difference between our own proteins and invaders.

Beyond genetics, having a family history of rheumatoid arthritis, especially among first-degree relatives, increases one’s rheumatoid arthritis risk. Environmental factors such as smoking, obesity, stress, hormonal changes, and even alterations in the gut’s microbiome have been linked to rheumatoid arthritis, too. Research in the past decade has also connected RA with other health issues like periodontal disease, asthma, and dietary factors.

“Rheumatoid arthritis can deeply affect daily life and overall quality of life depending on the symptoms one experiences,” Dr. Tancer notes, adding she often hears from patients about their challenges with everyday activities due to joint pain, swelling, and stiffness. Patients may struggle with tasks that require hand strength and dexterity, like opening jars, cooking, and driving, just to name a few. “Patients with rheumatoid arthritis also have a heightened risk of cardiovascular disease and osteoporosis compared to the general population, prompting us to recommend regular screenings for these conditions,” she adds.

It’s also essential for individuals with rheumatoid arthritis to keep up with age-appropriate cancer screenings and vaccinations. “Patients with RA on immunosuppression can be at higher risk of infection,” Dr. Tancer says.

Ahead, 39-year-old Heidi from Tampa, FL, shares her personal experiences with rheumatoid arthritis, from her initial symptoms and diagnosis to how she manages flare-ups and lives her life today.

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“Here’s How I Knew I Had Rheumatoid Arthritis”: A Patient’s Story

By Heidi Hughes, as told to Dr. Patricia Varacallo, DO

My first symptom of rheumatoid arthritis

When I was 34, I noticed my first symptoms of rheumatoid arthritis. It began with an unusual stiffness in my fingers on both hands. Initially, I thought it was just from sleeping in a strange position or perhaps the beginnings of carpal tunnel, given all the time I spend typing on my computer.

But this stiffness continued for about six months, gradually getting worse. My fingers not only remained stiff but also began to ache and swell, especially in the mornings—it took nearly an hour each day before my hands felt somewhat normal again.

The turning point came when I struggled to open a jar of peanut butter. The sharp pain shooting through my wrists brought me nearly to tears. That’s when I realized something was seriously wrong.

I made an appointment with my primary doctor, who ordered some blood tests. The results showed high inflammation markers and anemia. With that, my doctor referred me to a rheumatologist.

After further testing with the rheumatologist, it was confirmed: I had the markers for rheumatoid arthritis. I questioned whether I was too young for such a diagnosis, but she explained that rheumatoid arthritis isn’t like typical arthritis—it’s an autoimmune disease, and can be influenced by genetics. Being adopted, I don’t know much about my biological family’s health history, but it seemed possible that genetics played a role in my condition.

How bad does rheumatoid arthritis get?

In the months following my diagnosis, I learned firsthand just how debilitating rheumatoid arthritis can be. The disease affected my hands, but also my feet and knees. There were days when the pain was so intense that getting out of bed seemed impossible.

With rheumatoid arthritis, you can experience flare-ups. The worst flare-up I experienced happened about two years after my diagnosis. I woke up one morning and couldn’t move without excruciating pain. My joints felt like they were on fire, swollen to the point where my rings no longer fit, and my knees buckled under my weight. I had to call in sick to work and spent the next few days barely able to leave my bed.

I was so fatigued, too. No matter how much I slept, I always felt exhausted. The combination of pain and fatigue also took a toll on my mental health. I found myself withdrawing and struggling with feelings of depression and anxiety, which I now work with a therapist to navigate.

With rheumatoid arthritis, there’s also the increased risk of other health issues, like cardiovascular disease and potential impacts on my kidneys and lungs. Thankfully, I’ve learned that being treated for RA can help manage these risks and keep other complications at bay.

Treating rheumatoid arthritis

When I first started having flare-ups, my rheumatologist put me on prednisone, but made it clear that it wasn’t a long-term solution. She said we’d need to explore other options for more sustainable treatment.

That’s when I was introduced to disease-modifying antirheumatic drugs (DMARDs). We started with methotrexate, which is usually the first go-to for rheumatoid arthritis. At first, I dealt with some nausea and fatigue, but after a few months, my body adjusted, and I started seeing real improvements.

Still, methotrexate alone wasn’t quite enough. My doctor suggested we try a biologic drug next. It was a bit of a headache with insurance, and it took some back-and-forth before I finally got it approved. But once I started on adalimumab, a TNF inhibitor, I finally felt like my rheumatoid arthritis was getting under control. TNF, or tumor necrosis factor, is a protein in the body that causes inflammation and is involved in the immune response. TNF inhibitors work by blocking this protein, thereby reducing inflammation, preventing joint damage, and easing other symptoms associated with rheumatoid arthritis. It’s an injection I take every two weeks, and it’s made such a difference.

Along with medication, I started working with a physical therapist who taught me exercises to help keep my joints flexible and strong. I also gave acupuncture a try, and while the relief was temporary, it still helped ease the pain at times.

One of the biggest game-changers for me was adjusting my diet. After meeting with a nutritionist, I switched to an anti-inflammatory diet—cutting out processed foods and loading up on fruits, veggies, and omega-3 fats. It’s not a miracle cure, but I definitely feel better overall and more in control of my health.

Living with rheumatoid arthritis today

Thanks to my treatment plan, my disease is mostly under control, but I still have occasional flare-ups. When a particular joint flares up, a quick steroid injection often helps me manage the pain effectively.

To accommodate having rheumatoid arthritis, I’ve embraced a slower pace of life. I try to maintain a balance between staying active and allowing myself ample rest to prevent exhaustion.

I’ve incorporated low-impact exercises like swimming and yoga into my routine, which keep my joints flexible and support my overall health without overburdening my body. On days when I feel up to it, I love to take gentle hikes and connect with nature.

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