It’s not just joint pain and stiffness. RA can bring inflammation to your entire body.
As if the trademark joint pain and stiffness weren’t enough, the inflammatory effects of rheumatoid arthritis (RA) can go far beyond your hips, knees, hands, feet, and ankles. You may know that RA is an autoimmune disorder that targets the protective coating of your joints, causing them to become inflamed and thickened. Cue the stiffness, swelling, and, of course, major pain. But this sneaky condition has more tricks up its sleeve. RA inflammation can infiltrate important organs like your eyes, skin, heart, and lungs. And it’s been known to tamper with your sleep and mood.
So why the immune-system mayhem? For one, these extra-arterial (non-joint) symptoms are more likely to crop up if your RA is not well-controlled, according to the Johns Hopkins Arthritis Center, which is why it’s so important to work with a rheumatologist as soon as you’re diagnosed (and see them regularly) to make sure your treatment is working. (On that note, the medications for rheumatoid arthritis come with side effects that vary in severity from person to person, which can also lead to surprising symptoms.)
Other times these lesser-known symptoms are caused by secondary conditions linked with RA, such as Sjogren’s syndrome and fibromyalgia, according to Kevin Hackshaw, M.D., a rheumatologist in UT Health Austin’s Rheumatology Clinic and the chief of the division of rheumatology for the Dell Medical School Department of Internal Medicine in Austin, TX.
One final reason for RA’s unusual systemic effects? Well, sometimes they happen despite your best efforts to keep them at bay. “There certainly are patients who will have destructive changes that can occur that will be resistant even to some of the newer medications,” says Dr. Hackshaw.
This all sounds pretty defeating but there’s good news: RA treatment options have never been better. And once you and your doctor nail down the source of any new symptoms, there’s an arsenal of medications and lifestyle steps you can take to improve your quality of life. Let’s go over the range of surprising health issues that go hand-in-hand with RA, so you can be on the lookout for them if they happen to you.
When we say fatigue, we’re talking lay-you-out-for-days exhaustion that can severely impact your ability to function. Prolonged inflammation is often the main culprit for fatigue in people with RA, and it doesn’t always go away when you begin treatment for your arthritis. If you’re experiencing fatigue, the first step your rheumatologist may take is to increase your RA meds to control the inflammation, says Dr. Hackshaw. If that doesn’t do the trick, it may be there’s an underlying condition, like fibromyalgia, at play. “And 100% of those patients can have fatigue,” Dr. Hackshaw adds. Treating the fibromyalgia with specific meds for that condition can bring relief. So can energy-saving steps like practicing sleep hygiene, getting some exercise during the day, and checking with your doc about testing for underlying anemia or thyroid issues.
It stands to reason that if you’re fatigued you should get more sleep. Unfortunately, according to the Arthritis Foundation, fragmented sleep occurs in more than half of all people living with RA. For some, RA pain is waking them up at night. For others, wakefulness is caused by a sleep disorder, such as sleep apnea, says Laura Cappelli, M.D., M.H.S., assistant professor of medicine with expertise in internal medicine and rheumatology at Johns Hopkins Medicine, in Baltimore, MD. Dr. Cappelli says sleep apnea—waking when your breathing repeatedly stops and then starts up again throughout the night—is so common in the general population that many people who have RA also have it, contributing to their fatigue. Your doctor will first make sure your RA meds are adequately preventing nighttime pain, says Dr. Hackshaw, then they’ll address whether a prescription medication or even over-the-counter melatonin might help you sleep better.
Skin Rashes, Bruising, and Skin Cancer Risk
Taking certain RA medications can put you at risk for a variety of skin-related side effects. Hydroxychloroquine, a disease-modifying anti-rheumatic drug (DMARD) used to treat RA, can cause hyperpigmentation, or the appearance of dark patches on the skin, says Dr. Cappelli, and corticosteroids can cause skin atrophy and make you bruise more easily. And there are a variety of RA drugs, including methotrexate, that slightly increase your risk for non-melanoma skin cancer, Dr. Cappelli adds. If you’re on these meds it’s a good idea to use sun protection and have your skin checked periodically for any changes. “The reality is that most people don’t actually have these side effects from medications, so the benefits outweigh the risks,” says Dr. Cappelli.
Visible skin manifestations of RA include soft, fleshy bumps that pop up on knees, elbows, the lower back, or between fingers. These subcutaneous nodules are fairly common and are typically a sign of more aggressive RA, says Dr. Hackshaw. They’re usually small and painless but can interfere with joint movement and rub on clothing. Dr. Cappelli estimates less than 10% of her patients have these and they can be left untreated if they’re not bothersome. “They often will go away with treatment for the RA joint disease,” she says.
Other Skin Problems
It’s rare, but people with RA can have a few other skin problems. One is rheumatoid vasculitis, or the inflammation of small blood vessels that appear as purple patches on the skin and can rarely cause ulcers and rashes. Another condition, called neutrophilic dermatosis, can appear as either raised patches of skin on your legs, chest or face or you may have a large, inflamed wound that won’t go away, according to the joint-health website CreakyJoints. Both of these conditions affect less than 1% of people with RA, per CreakyJoints. Dr. Cappelli says if you see something weird going on with your skin, take a picture of it to share with your doctor for their take on how to handle it.
Numbness and Tingling
If you’ve ever felt weakness, numbness, or pain in your hands and feet and you live with RA, it might be from local nerve damage, or what’s called peripheral neuropathy. According to an article in the Journal of Family and Primary Care, peripheral neuropathy affects around 39% of people with RA. Dr. Hackshaw adds that this can be a result of uncontrolled RA or a result of secondary fibromyalgia. Early diagnosis and treatment of your RA are your best prevention steps.
Sometimes pain from arthritis can lead to widespread pain throughout the body, not just in the joints, and it can often persist even when RA inflammation is under control. The American College of Rheumatology refers to this as amplified musculoskeletal pain syndrome (AMPS) and compares it with an electric guitar plugged into an amplifier. For the average person, a pain stimulus—say a bump on the arm—will send a standard pain signal to your brain, like “Ouch! That hurt.” For someone with AMPS, that guitar amplifier is turned way up and gets louder and louder over time, which translates to intense and widespread pain. Dr. Hackshaw says this is another case where fibromyalgia may be at play and beginning fibro treatment can help.
Breathing and Heart Problems
Those subcutaneous nodules can appear on your lungs and heart, too. As with their skin counterparts, these nodules usually don’t cause any problems, though in some rare cases they can lead to a rupture causing a collapsed lung. In the heart they can lead to arrythmias or major heart problems, says Dr. Hackshaw. He adds that 20% to 40% of people with RA will have some type of pulmonary (lung) involvement that pops up on lung imaging for other reasons, but many don’t feel any symptoms at all. If you have RA and notice it’s becoming difficult to breath, a pulmonary function test and/or lung imaging can help your doctor pinpoint and treat any problems with your lung mechanics, Dr. Cappelli says.
Other lung and heart issues linked to RA include:
Interstitial lung disease, when long-term inflammation leads to scarring of the lungs, causing shortness of breath, dry cough, fatigue, weakness, and loss of appetite, according to Mayo Clinic.
Pleural disease, or inflammation in the pleura, the tissue surrounding the lungs. Fluid can accumulate between the two layers of the pleura (pleural effusion). Sometimes the fluid resolves on its own but larger effusions can cause shortness of breath.
Small airway obstruction. The walls of the lungs’ small airways can become thickened because of chronic inflammation and infection (bronchiectasis) or inflamed or injured (bronchiolitis), per Mayo Clinic. Mucus builds up in the lungs, causing shortness of breath, dry cough, and fatigue.
Pericarditis, or inflammation of the tissue lining the chest cavity and surrounding the heart; it can cause chest pain and difficulty breathing.
It might seem random, but people with RA may have a higher risk of getting gum disease. One study from the Johns Hopkins University rheumatology division showed that a type of bacteria known to cause chronic inflammatory gum infections also triggers the inflammatory autoimmune response found in the joints of patients with RA. This makes it super important to take care of your teeth and gums by brushing and flossing, and seeing your dentist (or periodontist, if necessary) regularly, says Dr. Cappelli.
Another mouth issue people with RA need to look out for is dry mouth, a symptom of a separate condition linked to RA called Sjogren’s Syndrome. Estimates show about 15% to 20% of people with RA also have what’s called secondary Sjogren’s, says Dr. Hackshaw. Like RA, Sjogren’s (pronounced SHOW-grins) is a systemic autoimmune disease, according the Sjogren’s Foundation, and its primary symptoms are dry mouth and dry eyes. “Patients who have severe dry mouth have more dental cavities,” says Dr. Cappelli. Certain RA antibody tests or a lip biopsy can indicate whether you have Sjogren’s.
People with RA, especially those who also have secondary Sjogren’s, can have dry eyes, which may lead to scleritis, painful inflammation of the sclera, or white part of the eye. Per the American Academy of Ophthalmology, scleritis causes severe pain, blurred vision, tearing, and extreme sensitivity to light. In severe cases it can lead to thinning or even perforation of the sclera, according to Dr. Cappelli. “If they’ve ever had scleritis in the past it’s important to get your eyes checked regularly,” she adds. Other eye issues related to RA include episcleritis, or inflammation of the outermost layer of the sclera, and less-commonly, uveitis, or inflammation of the uvea.
People with RA are about 70% more likely to have gastrointestinal (GI) issues than those without it, [per the Arthritis Foundation. While RA itself does not cause digestive issues, the medications you take to treat it sometimes have the side effect of messing with your GI tract. For example, methotrexate can cause nausea in some people, and leflunomide is known to cause diarrhea. Depending on how severe your symptoms are, Dr. Cappelli says, you may stop the medication all together or add in another medication to control the nausea or diarrhea. Another culprit for GI issues is an unrelated infection, since people with RA are more susceptible to catching viruses going around.
Is Extra Body Fat a Symptom of RA?
If you’ve heard that simply having RA makes you overweight, it’s likely that’s not actually the case. The Arthritis Foundation estimates two-thirds of people with RA are overweight or obese, which is the exact same proportion as the general population. And a study published in the European Journal of Rheumatology found no significant difference in body fat between RA patients and everybody else.
But, as the Arthritis Foundation points out, having extra body fat when you have RA can create extra problems. Excess fat releases high levels of inflammation-causing proteins throughout your body, making your joint inflammation worse. And people with obesity can have faster disease progression. In a University of Pennsylvania study of 23,000 RA patients, those who were obese (with a body mass index of 30) became disabled much sooner than other patients. And arthritis meds, including biologics and disease-modifying anti-rheumatic drugs (DMARDs), can be less effective in people with obesity, according to a recent review in the journal Rheumatology (Oxford).
Maintaining a healthy weight is crucial, but Dr. Cappelli says people with RA fight an uphill battle when it comes to trying to shed pounds. Corticosteroids for treating RA will lead to increased body fat storage and the inability to move freely due to active RA or damaged joints certainly doesn’t help. “We try to help patients control what they can control by keeping a health balanced diet—the Mediterranean diet works for most people—and treating the RA so they can be more physical active,” says Dr. Cappelli.
Cognitive, Mood, and Emotional Disturbances
Let’s not sugarcoat it: Living with a lifelong condition that brings bouts of pain and fatigue and a host of systemic side effects can be mentally and emotionally draining. RA warriors will tell you that there are times when their symptoms are flaring but they have to put on a smile and push through the pain just to get through the day. An article in Psychiatry Advisor reported that anxiety and depression affected as much as 40% of patients, according to one comprehensive review.
“It can be very difficult living with autoimmune disease and chronic pain in general. Certainly, patients can develop depression and anxiety,” says Dr. Cappelli. And those can be compounded when you pile on sleep issues and physical limitations from joint pain or damage.
What’s more is that RA-induced pain may actually impact how well your brain functions, according to a [report in the Journal of Family Medicine and Primary Care. Depression and fatigue added to the mix make it even harder to think clearly, leading to what many in the RA community refer to as brain fog.
Keeping RA pain in check with proper treatment is step number one (we know, we keep repeating this!) and next would be the possibility of a referral for psychiatric help, says Dr. Cappelli. Dr. Hackshaw adds that antidepressants that also provide pain relief can be very helpful in improving depression symptoms.
And Dr. Cappelli recommends yoga, mindfulness, and meditation to her patients, too. “There are a lot of complementary approaches that can be helpful in addition to traditional medical approaches to these issues,” she says.
What to Do If You Think You Have RA
Remember, when it comes to RA in general, or the sneaky conditions that can creep in during your lifetime with this disease, letting your doctor know pronto gives you the best shot at keeping your disease from progressing and stopping symptoms in their tracks. “We want to start therapy as early as possible to prevent some of these long-term complications,” says Dr. Hackshaw.