Understanding the RA Pain Spectrum
There's a huge range in how people with rheumatoid arthritis experience pain. Here's how to get the relief YOU need.
No two patients with any condition are exactly alike. But when it comes to rheumatoid arthritis (RA), it may seem like friends or support group members are having a totally different experience with pain and symptoms than that of you or your loved one. And that’s because, oftentimes, they are. Unlike other diseases where there are telltale signs that most patients feel, this autoimmune disease can really affect people differently. While some patients severely struggle, experiencing consistent pain in all their joints, others may only have minor aches in their hands and feet, says Nilanjana Bose, M.D., a rheumatologist at the Rheumatology Center of Houston in Houston.
Elena Myasoedova, M.D., Ph.D, an associate professor of medicine and a senior associate consultant in rheumatology for The Mayo Clinic in Rochester, MN, says multiple studies have been conducted to better understand why symptoms vary so much by patient “and there are still many unknowns.” She explains that the level of RA disease activity, the number and location of involved joints and the presence of involvement of internal organs, as well as personal perception of pain and presence of other comorbidities “may all affect how each person feels about his RA and what symptoms they have.”
The Location of Swelling Matters
Dr. Bose explains that some patients have pain in all joints, while others have pain in a few. The most typical joints that are affected are in the wrists and fingers, but even in more severe cases those areas might be spared or only an issue during a flare. “Each patient is very different in the way they present,” adds Veena K. Ranganath, M.D., associate clinical professor of medicine in the division of rheumatology at the David Geffen School of Medicine at UCLA in Los Angeles. Take, for example, Mary Sophia Hawks, age 58 of Knoxville, TN, whose RA was diagnosed in 2013 after a debilitating flare up where she experienced severe swollen joints all over her body, fatigue, and balance issues.
“When I have a flare, everything hurts. All my joints, my muscles, everything. I can barely get to the bathroom and back to bed on those days,” she says. Since then, she’s had her knee replaced (doctors found that “RA had eaten away at the bone,” she says) and her toes are bent and don’t straighten all the way. But so far, the disease hasn’t adversely affected her hands, which is a more common symptom of RA, so she’s able to work as a parish nurse at a local church. A positive attitude has been key in helping her live with the disease. “I still go to church and sing in the choir. That brings me incredible joy.”
Pain Threshold Plays a Role—Even in Diagnosis
Dr. Ranganath also says that a patient’s perception of their condition and pain acuity play a critical piece in how symptomatic they are. But being more sensitive to pain isn’t all bad news: It can actually mean that you get diagnosed earlier, which may lead to a better outcome long term. Those who experience pain tend to seek help more quickly, she explains, which is good since it’s important to get on medication that can manage inflammation and prevent joint damage as well as the cardiovascular problems that are common among RA patients. “Once we get the RA under control, overall outcomes are so much better,” she says. (For those not experiencing pain, it’s key to see your doctor and have them refer you to a rheumatologist if they see physical signs of the disease.)
Dr. Bose adds that patients with concurrent mood and/or sleep disorders—like depression, anxiety, stress and insomnia—tend to have a lower pain threshold and will complain of pain and fatigue more. And much of the pain an RA patient feels can be affected by “confounding factors” like osteoarthritis and fibromyalgia, which can cause pain.
Treatment Responses Vary, Too
Just as pain and symptoms may differ, how well any certain medication works to quell them can also vary. And it can take some serious trial and error to find the best fit for you. Since RA is an autoimmune disease, Dr. Ranganath says that the majority of medications address the mechanism of action by suppressing the immune system from attacking itself. But what works for one patient may not work for another, Dr. Ranganath explains, due to each individual’s different genetic composition and their unique environment. “You have to be patient and flexible,” says Hawks, who is a moderator and contributor to rheumatoidarthritis.net. “You have to realize it will take a while to determine if your medication is working and not every medication works for everybody.”
Dr. Bose also makes sure to take a holistic view when deciding how to proceed, treating “the person as a whole, not just their RA.” For example, if someone has ongoing depression or anxiety along with RA, she says it’s important to discuss managing mood problems, sleep issues, stress, lack of a good diet and lack of exercise, since all these conditions potentially can lead to inflammation and cause more pain.
Despite all that doctors don’t know about RA and pain, Dr. Myasoedova says there’s reason to be optimistic. “Over the past three decades, the number of medications available for treatment of RA has increased dramatically,” she said, with over 15 different medications that have been shown to prevent and/or delay progression of joint damage in RA. “And this number is increasing each year.” Hawks agrees. “There is a lot of room for hope,” she said.
- Prevalence of RA: Rheumatology International. (2017). “Prevalence of rheumatoid arthritis in the United States adult population in healthcare claims databases.” pubmed.ncbi.nlm.nih.gov/28455559/
- Heart Disease and RA: Journal of Rheumatology. (2006). “Cardiovascular disease and risk factors in patients with rheumatoid arthritis, psoriatic arthritis, and ankylosing spondylitis.” jrheum.org/content/33/11/2167.short