Red, swollen joints. Terrible stiffness that keeps you from getting out of bed. Exhaustion that simply won’t go away.
If you’re experiencing these symptoms for the first time, you might be tempted to treat them at home or just go to your health care provider’s office for a general checkup. However, these are all symptoms of rheumatoid arthritis — a chronic disease in which the body’s immune system attacks the joint tissue.
Fortunately, early treatment of RA may prevent debilitating joint degeneration and organ damage. Knowing the symptoms of RA and how to find the correct specialist can help you get the care you need.
Any episode of joint pain deserves attention. The Arthritis Foundation recommends a doctor’s visit for joint pain that lasts longer than three days or for joint pain that occurs several times a month. However, the importance of early diagnosis can’t be overstated for RA.
RA is a disease that has a “window of opportunity.” You can also think of this window of opportunity as a clock — from the first bout of symptoms, you have a certain amount of time to treat early stage RA. You may be able to stop or reduce the disease activity of RA through the use of disease-modifying antirheumatic drugs (DMARDs), such as methotrexate. Researchers generally agree that the prognostic window of opportunity for this early RA treatment is three to six months.
If you catch RA within the first three months, aggressive treatment with DMARDs may stop some or all of the joint damage associated with RA. You may also be able to prevent frequent RA flare-ups in the future. A six-year cohort study of almost 600 people with RA found that those who were diagnosed within three months of symptom onset had longer periods of remission after stopping DMARDs and also had lower levels of joint destruction. Other studies have found that more research is needed to better understand the effects of early RA treatment on long-term outcomes and quality of life.
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If early diagnosis is so important in successfully treating rheumatoid arthritis, why do so many people with RA wait for a diagnosis? It can be difficult to diagnose RA. Several conditions can cause joint pain, and RA can be confused with other conditions. In a 2017 study of almost 200 people with RA, 28 percent delayed going to any doctor for their symptoms for more than four months.
Unfortunately, general practitioners can misdiagnose RA or pass off symptoms as psychological or as general aches and pains. As one member of myRAteam said, “I complained of joint pain and fatigue for years before my primary care physician finally sent me to a rheumatologist.”
General practitioners sometimes refer people to specialists who aren’t equipped to properly diagnose RA. This leads to many incorrect diagnoses before RA is correctly identified. Almost half of the people in the 2017 study spoke with two doctors before seeing a rheumatologist (a doctor who specializes in autoimmune diseases like RA), and 21 percent of participants saw four or more specialists.
Many myRAteam members have experienced this merry-go-round of diagnoses. “I have been through the diagnostic wringer for the last three years,” one member said. “It started with possible multiple sclerosis, then possible lupus, until I was finally diagnosed with RA.”
Even if you get blood tests for RA, it can be difficult to get a definitive diagnosis. Blood testing is used to find rheumatoid factor and antibodies related to the body’s immune response to RA. Many people who have RA are seropositive, meaning they test positive for rheumatoid factor or for antibodies called anti-cyclic citrullinated peptides. However, you can have RA and still not have these antibodies show up in a blood sample. This is called seronegative RA.
Watch Emily Johnson talk about her difficulties in getting diagnosed with arthritis.
The best way to advocate for yourself and receive a diagnosis of rheumatoid arthritis as soon as possible is to know the symptoms of RA. It’s important to understand how RA differs from other forms of arthritis and other autoimmune diseases. Keep a journal or log of your symptoms to show to your doctor, and bring that journal to your appointment. Ask for a referral to a rheumatologist, or directly make an appointment with one. The European League Against Rheumatism recommends making a visit within six weeks of symptom onset.
It’s important to know the differences between osteoarthritis, which is caused by wear and tear on joint cartilage, and RA, which is caused by inflammation.
In addition, having trouble making a fist and tenderness in the small joints of the fingers can be signs of RA (as opposed to osteoarthritis).
Other autoimmune diseases have similar symptoms as RA, but there are differences that you can detect. Psoriatic arthritis can cause symptoms similar to those of RA. However, psoriatic arthritis is more likely to affect the feet, fingers, and toes and cause changes in the fingernails and toenails. Psoriatic arthritis is also more likely to cause lower back pain.
The autoimmune condition lupus causes fatigue, fever, and joint deformity like RA. People with lupus have certain symptoms that do not occur in RA, though, such as a butterfly-shaped facial rash and skin sensitivity to light. In addition, lupus does not cause joint erosion.
Fibromyalgia — a musculoskeletal condition that causes pain all over the body, as well as exhaustion, sleep problems, and emotional and mental symptoms — is more common in people who have RA. However, fibromyalgia symptoms can actually hide symptoms of RA, meaning people with RA go too long without a diagnosis.
“Has anyone ever been misdiagnosed with fibromyalgia and had it turn out to be RA?” one myRAteam member said. “I have. It was a hellish two years untreated, taking Lyrica I never needed to take.”
If you have fibromyalgia but also have joint pain and swelling, or if your joints are stiff for hours at a time, speak with your doctor. These symptoms aren’t common in people with fibromyalgia, but they can indicate the development of RA.
Rheumatoid arthritis is a disease that runs in families. If you have a first-degree relative (a parent or sibling) with RA, you are two to four times more likely to develop RA yourself. Although women are more likely to develop RA than men, this family risk of developing RA does not differ by sex.
Knowing your family history of RA can help you understand your risk of developing the disease. If you start developing systems that could be RA, talk to your doctor and, if needed, get appropriate treatment. “If there is a family history, it is a good possibility that you have it,” one myRAteam member said. “My tests were negative, but all my joint pain and swelling were signs. Plus, with my family history, the doctor said that I have RA.”
If you have symptoms of RA but receive a negative blood test, don’t assume that this means that you do not have RA. As a myRAteam member said, “They ran blood work several times. The problem is I'm seronegative, so unfortunately I ended up getting worse before they could make a proper diagnosis based on clinical presentation.”
Speak with a rheumatologist about your symptoms. The same member said, “I just wish my last rheumatologist would have paid closer attention to the symptoms, so I could have started treatment sooner.”
On myRAteam, the social network and online support group for those living with RA, members talk about a range of personal experiences. Getting an RA diagnosis is a frequently discussed topic.
Were you recently diagnosed with rheumatoid arthritis? How was your diagnostic process? Do you wish you’d had a diagnosis sooner? Comment below or post on myRAteam.