How I Learned to Manage Pain After Diagnosis

King’s doctor started her on aggressive treatment to control inflammation. However, she still had to go through various forms of treatment, including taking NSAIDS and biologics before finding one that brought her relief.

“[Keep] in mind that any damage that is done by rheumatoid arthritis is permanent once it becomes any level of erosion, so you have to figure I had lost a year-and-a-half to almost two years of having issues with swelling and erosion on different pieces and parts of my body,” King said.

Managing pain is a constant challenge too.

“One common misunderstanding is that the pain associated with rheumatoid arthritis and other forms of inflammatory arthritis is solely due to joint damage or very active disease,” Dr. M. Elaine Husni, vice chair of the Department of Rheumatic and Immunologic Diseases and director of the Arthritis and Musculoskeletal Center at Cleveland Clinic, told Healthline.

She said that in addition to joint damage, RA pain can come from soft tissue injury around the joint, such as tendinitis or bursitis, or mechanical wear and tear from cartilage loss, known as osteoarthritis (OA).

“You may need additional treatment for soft tissue condition or OA to your RA treatment to best manage pain,” said Husni.

RA pain may also come from central sensitization, where pain can stem from abnormal processing of pain pathways from the brain.

“So there may not be any actual joint damage but still joint pain. This could be chronic pain or fibromyalgia,” Husni said.

To add to the complications of managing RA pain, arthritis pain is variable, fluctuating with disease activity, stress levels, and even weather changes.

“The complexity of pain in RA includes both nociceptive and neuropathic components, making it a multifaceted experience that requires comprehensive management beyond just treating joint inflammation in some cases,” said Husni.

This is also the case for King.

While most people begin experiencing pain at the onset of the RA, she didn’t have pain initially but graduated into pain over time.

“Once the pain kicked in, it was definitely there,” she said.

She journals to keep track of which parts of her body are in pain and also writes down the foods she eats.

“In your mind, you’re having a rough day, but over time, you may realize you feel that way when you eat a lot of gluten,” said King. “Triggers are something to really keep track of.”

Pain from rheumatoid arthritis can be intermittent and can occur at any time.

“This can be very unsettling for people and can add an element of unpredictability to their life,” said Horovitz.

King manages her pain day by day and sometimes hour by hour.

“At this moment, I’m doing okay, but in an hour, I could get up or lay down and be in a different space,” she said.

RA and other forms of inflammatory arthritis are often considered “invisible diseases” because the debilitating pain and fatigue that people experience may not be apparent to others, including healthcare providers.

“When the manifestations of a disease are not overtly apparent, it can be difficult for others to understand the pain a patient may feel,” said Horovitz.

The invisibility can lead to underestimation of the severity of the disease, delays in diagnosis, and inadequate pain management.

“Patients may face skepticism about the legitimacy of their pain, especially when there is a lack of visible joint deformity or radiographic evidence in the early stages of the disease,” Husni said. “Moreover, societal stigma associated with chronic pain conditions can lead to patients feeling dismissed or misunderstood, further complicating their journey to receive appropriate care.”

King has experienced this firsthand and noted that hospitals may treat people with RA like they are drug-seeking, excessively trying to fill medications.

“You have to be diligent and advocate for what you think you need…if you feel like your level [of pain] is higher than what they’re giving you [medication for], let them know what worked for you in the past…but if you are not careful, some doctors will consider it med seeking,” she said.

When King was first diagnosed with RA, she reached out to the Arthritis Foundation for support and asked for guidance on how to become a resource to others in her community.

“I never want anybody to go through the things I went through when I was initially diagnosed,” said King. “Not having resources in the area, not having peers who I could connect with or people who I could talk to who understood what the condition was, and the ins and outs of it.”

After becoming trained by the Foundation, she became chair of the Buffalo Walk to Cure Arthritis, an event that she started in 2018. She also speaks at the Foundation’s Pathway Conference, leads webinars, and is the facilitator of the African American Connect Group.

She recently took part in a Foundation initiative that invited people living with arthritis to share words or mantras that inspire their lives. (King chose “grace.”) The words were made into bracelets that the Arthritis Foundation will distribute to more than 50 markets in the U.S. and give out free of charge throughout September in cities like Atlanta, New York City, Phoenix, and D.C.

“Whatever I can do to continue to share the message because it’s a form of therapy for me as well, just knowing my story can help somebody else who is having a rough time and doesn’t know how to get started with navigating their condition,” said King.