RELATED: 8 Hacks That Can Help Rheumatoid Arthritis Hand Pain The occurrence of nodules is largely limited to people who test positive for rheumatoid factor or an antibody known as anti-cyclic citrullinated peptide (ACPA); they’re relatively rare in those who test negative for it. (Rheumatoid factor and ACPA are diagnostic markers of rheumatoid arthritis.)
Bumps May Form on Elbows, Hands, Feet, and Other Parts of the Body
Certain people on methotrexate to treat RA are more likely to develop nodules, though it can depend on when the drug was started and how severe the RA is, says Dr. Pisetsky. “But we don’t see nodules as much because the treatment for rheumatoid arthritis is so good,” he says. “I used to characterize patients who either had nodules or not. “ Nodules appear in various places, often when there is local trauma, says Pisetsky. “When you have arthritis, you may start using your elbows to get out of a chair, for example, because you don’t use your hands or wrists because RA makes them hurt, so nodules can be common at the elbows. “Or nodules might show up where shoes would hit the Achilles tendon.”
Coping With Visual and Hidden Rheumatoid Nodules
Medical researchers have spent a lot of time studying these little knots, which are made of inflammatory tissue. Although most of the focus is given to nodules in the skin, they can also show up in other places around the body, including the throat, vocal cords, lungs, heart, and tendons. If you’re concerned that you have nodules related to your rheumatoid arthritis, here are some ways to identify them:
They usually show up after you’ve had rheumatoid arthritis for some time. But you can also get them before you have joint problems.They commonly show up on body parts that often feel pressure, such as your elbows, fingers, back, heels, and the back of your head. They may begin growing after you’ve had a minor trauma in a spot.They may feel firm and rubbery, or soft and squishy. When you touch them, they may feel stuck in one place, or they may move around.They’re flesh-colored and can range greatly in size, from less than 4 millimeters (less than the width of a pencil eraser) to more than ½ inch.
How Rheumatoid Nodules Affect Function and Body Image
Depending on their location, nodules may cause pain or difficulty, such as making walking painful if they develop on the feet or can interfere with motor tasks such as holding your toothbrush or eating comfortably, says Cheryl Crow, an occupation therapist based in Seattle, the owner of an educational company and podcast called Arthritis Life, and a person who lives with rheumatoid arthritis. Occupational therapy can help a person with RA use compensatory strategies such as using a jar opening aid, a wide-grip pen or stylus, or using a touchscreen on a computer if it is difficult to use your hand, says Crow. While surgery is an option to discuss with your physician, “many people are able to function despite the nodules and don’t treat them.” However, “it can be difficult for people with a visible physical difference such as a large rheumatoid nodule to cope with unwanted comments and stares,” Crow says. “It can be a visible reminder of the disease, which can be stressful for patients.”
Love Your Rheumatoid Nodules and Visible RA Symptoms, Advocates Say
To help raise awareness of RA’s physical effects in an effort to create support and community, Effie Koliopoulos, a freelance writer and rheumatoid arthritis and disability advocate, created the #MyHandsAreLovable hashtag to use on Instagram and Twitter. Koliopoulos, the creator of the Rising Above Rheumatoid Arthritis blog and website, developed the hashtag after living with RA and developing nodules on her right elbow and left wrist. “The visible deformities weren’t being talked about or shared enough, and I wanted to bring light to this for those who are struggling in silence,” says Koliopoulos. “I want people to know that damage can happen fast even when you are doing well. It may occur when you are taking the best and most modern medication there is available, as I was. It can occur during stressful times in life, or due to underlying root causes are those being controlled well enough, that fuel the disease even more.”
Not Everyone Is Bothered When Rheumatoid Nodules Develop
Koliopoulos noted that everyone is different, “even if we are clumped under the same diagnosis,” and that it took her several years to be open about her nodules and how they affect her self-esteem. “It’s very jarring to witness your body change due to a chronic illness,” she says. “It’s not the same as gracefully aging or getting older.” Others using the #MyHandsAreLovable hashtag have expressed a range of emotions, from embarrassment and unworthiness to fear of being judged or dismissed. Others, she says, “feel good about themselves and have fully accepted and come to terms with how things are. They have explored, adapted, and found ways to modify. They don’t care what others think, and they share openly and proudly.” The hashtag can be used anytime, and Koliopoulos encourages people to look for past Twitter or Instagram posts for support. “For those wanting some encouragement, insights, and wisdom, seeing other people share their stories can make you feel less alone.”
Treatment Options for Troublesome Rheumatoid Nodules
Since nodules don’t generally cause any problems, they usually don’t need to be treated. Sometimes a change in medication, such as stopping methotrexate in favor of something else, may help reduce the size of a nodule partially or fully, says Pisetsky. “With the current approach to therapy, treating RA early and aggressively, has really decreased the amount of inflammation that people have, which in the past has made nodules more common.” In fact, some experts caution against surgical removal of the nodules, as they may often return or even become infected. But if they’re on your feet, your shoes can rub them, causing irritation. “I’ve always been cautious about surgery, because at a site that is inflamed, I worry about wound healing. But I have seen many people who have had successful surgery,” says Pisetsky. Depending on many factors, it’s possible that the disease-modifying antirheumatic drugs (DMARDs) taken for rheumatoid arthritis will help shrink nodules. Talk to your doctor. If you have a large nodule, however, your doctor can inject it with a steroid medication to shrink it. Surgery may also be required if the nodule is causing such problems as nerve pain, an open sore, or range-of-motion issues. RELATED: How to Get Started With Occupational or Physical Therapy for RA Pain
