7 Myths About Ankylosing Spondylitis, Debunked
Ankylosing spondylitis isn’t well known or well understood. Here, we separate out the facts behind common misconceptions about this chronic inflammatory arthritis.
Before you were diagnosed with ankylosing spondylitis (pronounced ank-kih-low-sing spon-dill-eye-tiss), a form of arthritis that primarily affects the spine, chances are you probably never heard of it or knew much about it. In fact, many people misunderstand the condition, says Nortin M. Hadler, MD, a rheumatologist and emeritus professor of medicine and microbiology/immunology at the University of North Carolina School of Medicine at Chapel Hill.
One of the best ways to manage ankylosing spondylitis effectively is to learn as much as you can about the condition. Read on to learn the facts behind some of the top misconceptions about ankylosing spondylitis.
Fact: Ankylosing spondylitis is more common than you might think.
According to the Spondylitis Association of America (SAA), at least 3.2 million people in the U.S. have a form of spondyloarthritis, defined as a group of inflammatory diseases that cause inflammation in the spine, joints, and areas where ligaments and tendons attach to bone. Ankylosing spondylitis, which primarily impacts the spine (though other areas of the body can also be affected), is one type of spondyloarthritis.
That said, the SAA notes that those estimates are based on older data that didn’t include all types of spondyloarthritis; they estimate that future research would likely put the actual numbers of spondyloarthritis at around or over 6.4 million U.S. adults.
While there aren’t as yet reliable estimates of how many people have ankylosing spondylitis specifically, the SAA notes that spondyloarthritis as a whole is more common than rheumatoid arthritis, multiple sclerosis, and amyotrophic lateral sclerosis (ALS) combined.
Fact: While previous estimates indicated that men were two to three times more likely to be affected by ankylosing spondylitis than women, updated research has found that the true ratio may be closer to 1:1, according to a study published in August 2021 by the journal Arthritis Care & Research. Ankylosing spondylitis affects both sexes, Dr. Hadler says.
There are, however, some key differences in how ankylosing spondylitis affects men and women, according to a review published in August 2020 in Seminars in Arthritis and Rheumatism. For one, it takes women significantly longer to get the correct diagnosis — about 9 years on average for women versus 6.5 years for men. The review notes that some explanations for this discrepancy include differences in initial ankylosing spondylitis symptoms (women may experience more widespread pain, which is sometimes misdiagnosed as fibromyalgia, whereas men may complain more of back pain) as well as doctors’ mistaken perception that ankylosing spondylitis is more of a “male disease.”
Men are also thought to experience more severe ankylosing spondylitis than women, when in fact the impact of the condition is much more equal, according to the review. The researchers note that the reason for this mistaken perception is probably due mainly to the fact that men are more likely to have worse hip and spine changes due to the disease in X-ray images compared to women, who tend to have slower development of these types of changes that show up in scans.
Fact: It’s hard to diagnose ankylosing spondylitis based only on back pain because back pain is so common. “Hardly anyone goes one year without a backache,” says Hadler. Although some people persist in looking for answers for their chronic back pain, others may dismiss it, not realizing it may be a sign of a more serious condition. Because ankylosing spondylitis can also affect other parts of the body, the diagnosis may actually come from another problem, according to Hadler.
It’s also possible for a doctor to see the signs of ankylosing spondylitis on an X-ray yet diagnose a different medical issue altogether. While there’s no definitive test for ankylosing spondylitis, diagnosis is based on a combination of your medical history, a physical examination, X-rays or other imaging tests and, potentially, blood tests.
Fact: Chronic back pain is a very common clue that leads to a diagnosis — that’s because ankylosing spondylitis primarily affects the spine. But ankylosing spondylitis can also affect other joints, including your shoulders, ribs, hips, knees, and feet. Inflammation from ankylosing spondylitis can affect other parts of your body, such as your digestive system or your eyes, leading to a condition called uveitis. In fact, ankylosing spondylitis can affect the eyes in more than 30 percent of people who have it, according to the National Institutes of Health. Less commonly, ankylosing spondylitis may impact your lungs or heart.
Fact: The back pain associated with ankylosing spondylitis differs from other types of back pain in that it worsens with rest and gets better with activity. Being active is actually one of the best things you can do for your ankylosing spondylitis, says Elyse Rubenstein, MD, a rheumatologist at Providence Saint John’s Health Center in Santa Monica, California.
According to the SAA, exercise can help people with spondyloarthritis maintain mobility and flexibility and help improve stiffness, pain, fatigue, and overall function. “I recommend a good exercise regimen and physical therapy,” Dr. Rubenstein says. Ask your doctor about specific exercises that might be good for you and consider working with a physical therapist who can help you design a stretching and strengthening program that’s specifically tailored to your needs.
Fact: Some people are hesitant to take NSAIDs for ankylosing spondylitis because they’ve heard these drugs can upset the stomach. However, NSAIDs are actually the most common pain reliever prescribed for people in the early stages of the condition, says Rubenstein.
When you take NSAIDs under a doctor’s supervision, you can minimize the risk of side effects like heartburn. Your doctor can also help advise you on the best way to use NSAIDs for the shortest time period to reduce the risk of side effects.
Fact: A fused spine occurs only in late stages of ankylosing spondylitis, Rubenstein notes. For some people, the condition never progresses that far. Following your prescribed treatment plan, which should include both exercise and medication, can help your prognosis.
If you have persistent symptoms or progressive damage to your spine, Hadler adds, a growing number of newer drugs can be very effective. Talk to your doctor about all symptoms you’re experiencing and ask which treatment options may help delay or prevent disease progression.
Ankylosing spondylitis is a form of arthritis that mainly affects your spine, but it can also impact other joints and organs. A doctor's diagnosis is not based only on back pain. Despite misconceptions about ankylosing spondylitis, it's not especially rare and can affect both sexes equally.
People often take NSAIDs to reduce ankylosing spondylitis inflammation and pain, and staying active rather than resting may help manage symptoms. Ankylosing spondylitis doesn’t always reach its late stages and cause a fused spine, so speak to a doctor about medications that can help prevent or slow disease progression.
Additional reporting by Katherine Lee.
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