What does it feel like to have rheumatoid arthritis? The most classic RA symptom is joint pain, usually in the same joints on both sides of the body, and most often in the hands and feet. But really, RA can be so much more than that: Symptoms can affect your entire body and change from day to day. Why? Because RA is a systemic autoimmune disease that triggers chronic inflammation, which can manifest in different ways: exhaustion, brain fog, and of course, pain and stiffness. Early diagnosis and treatment can make a huge difference in how your disease progresses—or doesn't—so if you even think there's a chance your might have RA, make an appointment with your doctor right away. Here’s exactly what to watch out for.
We went to some of the nation’s top RA experts to bring you the most scientific and up-to-date information possible.
Nilanjana Bose, M.D.Rheumatologist
Elizabeth Schulman, M.D.Rheumatologist and Assistant Professor of Medicine
Dee Dee Wu, M.D.Rheumatologist and Assistant Attending Physician
What is RA Again?
Rheumatoid arthritis is an autoimmune disorder, which means the immune system mistakenly attacks healthy tissue in the body, causing inflammation. In the case of RA, the target is the synovial membrane, the tissue that lines joints. Typically, this lining is thin and delicate, and it produces a clear fluid that helps keep the joint healthy, lubricated, and moving smoothly. But when the membrane becomes inflamed, the fluid gets thick and begins builds up, putting painful pressure on the surrounding nerves. When that happens, it’s no wonder you feel muscle aches, stiffness, or heat around affected joints.
Despite the gazillion photos of elderly hands that pop up when you Google arthritis, RA often affects much younger people, usually between the ages of 40 and 60, and symptoms can affect your entire body (not just your hands!). Women are also as many as three times more likely to get RA than men. (Will the gender inequality ever end? Just asking.) Some evidence suggests that sex hormones may be at play. Makes sense, since the peak incidence of RA in women occurs during the menopausal years, just as sex hormones are fluctuating.
Of course, nearly everybody gets joint pain sometimes, from exercise, strains, sprains, or other injuries. But RA joint pain is distinct in a few ways:
It’s usually symmetric, meaning it occurs in the same joints on both sides of the body.
It typically starts in the hands or feet, and later spreads to larger joints like knees, ankles, elbows, hips, shoulders, or the neck (though the time it takes to spread may be totally different for you than it would be for someone else with RA).
It tends to occur with other joint issues like:
Joint stiffness: Waking up feeling stiff all over is one of the classic symptoms of arthritis. It’s just harder to move, leaving you feeling a bit like the Tin Man in need of a shot of oil. You may find yourself struggling to hold your coffee cup, open doors, or fasten belts and buttons. This can happen with osteoarthritis, too (the wear-and-tear form of the disease), but for those with RA, that fumbling feeling tends to last longer—more than 30 minutes. The reason? While you were sleeping, your cartilage soaked up all that extra fluid in your joints, leaving very little to keep things loose and causing that sensation of tightness. Any extended period of inactivity—not only sleeping—can spark that stiff feeling. In fact, that brings up another distinguishing sign of RA: The stiffness improves as you move. (The cartilage gets squeezed,the fluid is released, and the stiffness subsides.) Osteoarthritis, alternately, tends to get worse with movement.
RA Joint swelling: Fluid buildup in the joint can also lead to localized swelling. RA swelling tends to feel doughy, spongy, or squishy. It’s the reason why you have to struggle to put on a ring, a classic sign of arthritic fingers.
Joint tenderness: Morning stiffness is usually accompanied by tenderness, too. Because of the added pressure on the joint nerves, even the slightest touch or squeeze can elicit pain.
Joint redness and/or warmth: Inflammation can cause the skin’s capillaries to widen, making them more visible and increasing blood flow to the area—which enhances their red appearance and can sometimes make your skin feel warm.
Early Non-Joint Symptoms of RA:
The symptoms of RA that don’t have anything to do with the joints are all linked to systemic inflammation. Known as constitutional symptoms, meaning they affect the whole body, these can wax and wane during the day, or vary from one day to the next.
Non-joint symptoms often predate joint pain by weeks to months. Unfortunately, they’re also the same symptoms that seem like they go with everything—fever, fatigue, loss of appetite—so people (even doctors) often fail to link them to RA.
Non-joint symptoms of RA can include:
Chronic fatigue: This can be associated with any number of disorders, from the flu to cancer. In people with RA, though, the fatigue tends to be severe. (Raise your hand if you have ever felt like you could just not pull yourself out of bed.) You may feel so wiped, without any explanation, that you skip out on things that you usually love, or climb under the bed covers extra early, even though you might have trouble sleeping if joint pain’s keeping you up at night (the literal definition of adding insult to injury).
General malaise/low-grade fever: You might also experience what doctors call general malaise—which can be similar to when you have a nasty cold and just kind of feel lousy all over. You may feel weak, achy, generally uncomfortable, and run down. You may even have a low fever of 99°F or 100°F.
Diminished appetite and weight loss: Pants feeling a little looser? Unexplained weight loss (among other things) could be a warning sign of RA. That’s because the production of cytokines—the inflammatory proteins that come with RA—can impact your metabolism and cause muscle to break down. Weight loss could also be related to another side effect of inflammation: losing your appetite.
Brain fog: About a third of RA patients suffer cognitive impairment. You might have trouble thinking clearly or remembering tasks. MRI research from the University of Michigan suggests that RA-related inflammation may alter connectivity in the brain, which could explain these symptoms. (Naturally, being in pain or having trouble sleeping don’t help you feel your best mentally either.)
Rheumatoid Arthritis Pain Patterns: Everyone Is Different
RA symptoms typically develop slowly (and insidiously) over weeks or months, starting intermittently and eventually becoming a daily occurrence.
Usually the small joints are the first to be targeted: those in the hands (wrist or finger knuckles—the bottom and middle knuckles, not the top joints), or those connecting the feet to the toes. As the disease progresses, symptoms are likely to spread from the hands and feet to larger joints like the knees, ankles, elbows, hips, shoulders, and neck. The total number of joints affected varies, but RA almost always ends up being “polyarticular,” affecting more than four joints.
Still, it’s important to remember that RA symptoms, and the rate at which they progress, can be completely different for everyone. For one person, symptoms might come on suddenly within days, attacking several joints off the bat. Someone else, though, may have swelling in one or more joints that lasts days or weeks and then mysteriously disappears, only to return weeks or months later, sometimes in different joints. In either case, the more classic RA symptoms might not appear for months.
And while rare, some people experience RA onset as chronic pain in just one joint, known as monoarthritis. According to small studies, about 10% to 15% of patients with monoarthritis progress to a diagnosis of RA.
If you have joint pain that doesn’t quite fit the classic pattern of RA, watch out for other clues:
morning stiffness lasting more than 30 minutes
pain that decreases with activity
family history (having a relative with RA can increase your risk three to five times)
What Does Permanent Joint Damage in RA look like?
Severe or untreated RA can cause bones to erode and joints to shift, leading to permanent deformities over time. That permanent joint damage has a different pain pattern than the kind you experience from a typical RA flare. It’s pain that’s present even when the disease isn’t active, kind of like the pain from an old sports injury. It can also lead to synovial cysts (fluid-filled sacs in joints) and displaced or ruptured tendons.
Once permanent damage sets in, your doctor may recommend surgery. But of course, it’s important to remember that rheumatoid arthritis can be managed, and the best treatment of all is prevention, through early diagnosis and effective treatment.
What is a Rheumatoid Flare?
You may just be going along in your life when suddenly, your symptoms hit much harder. That whammy is called a flare: a period of increased disease activity. Signs and symptoms can vary in severity and may even come and go. A mild flare can feel flu-ish, leaving you achy all over and just wiped. A more severe one might leave you feeling like every cell in your body hurts, to the point where any kind of movement from sitting to laying down to standing hurts and you cannot get comfortable.
An RA flare-up can last days or months. Frequency varies depending on the severity of the disease. You might, like many patients, find there are certain events that come right before a flare—periods of high stress, overexertion, or poor sleep—which may then be followed by periods of remission, though you might still feel pain due to lingering damage that developed.
What's the Difference Between Seropositive vs. Seronegative Rheumatoid Arthritis?
In RA, there are two classic auto-antibodies:
anti-cyclic citrullinated peptide (anti-CCP)
RA patients who test positive for auto-antibodies have what’s known as seropositive rheumatoid arthritis. About 70% to 80% of RA patients have this form of the disease.
On the other hand, patients who have RA symptoms but test negative for these auto-antibodies are diagnosed with seronegative rheumatoid arthritis.
Why does it matter? Symptoms are similar between the two groups of patients, though some evidence suggests that seronegative patients have a lower risk of joint damage and experience fewer “extra-articular” symptoms. What are extra-articular symptoms? Glad you asked...
How Do Rheumatoid Arthritis Symptoms Affect Organs and Body Systems?
RA can affect the whole body, leading to symptoms far beyond joints. Doctors call these symptoms extra-articular manifestations, and they occur in about 40% of RA patients, typically (but not always) in seropositive patients with more advanced disease. (The auto-antibodies associated with being seropositive may increase the risk.)
Organs and body systems that can be affected by RA include:
Some extra-articular signs and symptoms of rheumatoid arthritis:
Rheumatoid nodules: About 30% of patients experience rheumatoid nodules, firm—but-painless bumps of tissue that form beneath the skin, usually on the elbows but also on the hands, arms, feet, and knees.
Dry eyes/dry mouth: About 10% of patients experience dry eye, often with dry mouth, in what’s known as secondary Sjogren’s disease, a chronic inflammatory disorder affecting tear production and saliva. (The condition can occur on its own, but then doctors call it primary Sjogren’s disease.)
Carpal tunnel syndrome: RA swelling in the wrist can pinch the median nerve, which feeds into your hand and fingers. You may notice numbness and tingling in the hand that comes and goes. It can be one early sign of the disease.
Lung problems: Inflammation affecting the lungs can cause coughing, wheezing, and breathlessness. Lung disease develops in about a quarter of RA patients—sometimes even before joint symptoms occur. (In fact, some evidence suggests RA may actually start in the lungs.) Pulmonologists may refer patients to a rheumatologist if they also have signs or symptoms of RA. And while RA is more common in women, RA-linked lung disease actually happens twice as often in male patients and occurs most often between the ages of 50 and 70. If you have RA and notice any breathing problems, call your doctor right away.
Heart disease: Rheumatoid arthritis doubles the risk of heart problems like heart attack and stroke. While it’s not totally clear why, one possibility is that the systemic inflammation attacks the arteries that lead to the heart. In fact, we do know that atherosclerosis (the fatty buildup in the blood vessels linked to heart disease) is in part caused by cytokines, the same inflammatory proteins that come with RA. As unwelcome news as that is, remember you still have control: You can mitigate your risk by seeking adequate treatment to control your RA, managing known heart disease risk factors such as blood pressure, smoking, and cholesterol, and by following heart-healthy recommendations.
RA can also impact nerve tissue, bone marrow, and blood vessels, and it increases the risk of osteoporosis (bone loss) and anemia (low red blood cell count).
Aching joints are kind of a normal thing for many. (If you just ran a marathon, you’ve got sore knees for a reason.) But if you notice new joint pain—especially pain that affects both hands or both feet—that lasts for more than a week, call your doctor. And if you have a family history of RA, be extra alert.
If your doctor suspects RA, you’ll be referred to a rheumatologist, a specialist with specific training and skills to diagnose and treat rheumatoid arthritis. The earlier both of those happen, the better your chances of reducing or eliminating symptoms with treatment. Don’t delay: If you’re concerned, err on the cautious side and make an appointment.
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How Is Rheumatoid Arthritis Diagnosed?
RA diagnosis is based first and foremost on clinical symptoms. But several lab tests are useful for confirming diagnosis. All (except the synovial fluid analysis) are blood tests:
Rheumatoid Factor (RF): This test measures (you guessed it) rheumatoid factor, one of those two classic auto-antibodies linked to RA. It’s present in 70% to 80% of RA patients.
Antibodies to Citrullinated Peptides (anti-CCP): Anti-CCP (auto-antibody no.2) is elevated in about 60% to 70% of RA patients.
Erythrocyte Sedimentation Rate (ESR): This test measures how quickly erythrocytes (red blood cells) settle at the bottom of a test tube. Because inflammatory proteins can cause red blood cells to clump together, a faster-than-normal ESR could indicate inflammation, possibly from RA.
Antinuclear Antibody (ANA): This test looks for antinuclear antibodies, a type of auto-antibody that attacks healthy proteins within the nucleus of your body’s cells. High levels could mean an autoimmune disease (maybe RA). Still, it doesn’t always mean you have a disease—up to 15% of healthy people test positive for ANA.
C-reactive Protein (CRP): A marker of inflammation, C-reactive protein is frequently elevated with RA, and decreases as the disease gets under control.
Complete blood count (CBC): This test can measure all the different parts of your blood, but for RA we’re looking at a few specifics. A high white cell count, for instance, could indicate inflammation, possibly caused by RA. And low levels of red blood cells and hemoglobin (iron-packed proteins that carry oxygen) could also be signs of RA. Chronic inflammation can interfere with the creation of new red blood cells (which explains why people with RA sometimes develop anemia).
Synovial fluid analysis: This test is a bit different because it analyzes not blood but synovial fluid, obtained by inserting a needle into the space between the bones at a joint. The health-care professional will likely numb the area with a local anesthetic first. Used to find the cause of joint inflammation, this test can reveal specific abnormalities and may help determine if inflammation is due to infection, gout, or arthritis, among other things. It could help rule out RA.
Doctors may also use ultrasound or MRI to look for joint damage. Ultrasound can detect bone erosion, plus give estimates of ongoing inflammation. MRI can reveal early bone erosion.
Once diagnosed, you can work with your rheumatologist to find effective treatment.