Ankylosing spondylitis isn’t well known or well understood. Here, we reveal the facts behind some common misconceptions about this chronic inflammatory form of arthritis.
Before you were diagnosed with ankylosing spondylitis, a form of arthritis that primarily affects the spine, chances are you probably had never heard of it or didn’t know 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.
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1. Myth: Ankylosing Spondylitis Is a Rare Condition
The truth is, ankylosing spondylitis is probably more common than previously thought.
According to the Spondylitis Association of America (SAA), at least 3.2 million people in the United States 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 6.4 million U.S. adults or more.
2. Myth: Ankylosing Spondylitis Is Primarily a Concern for Men
While previous estimates indicated that men were 2 to 3 times more likely to be affected by ankylosing spondylitis than women, updated research has found that the true ratio may be closer to one to one.
Ankylosing spondylitis affects both sexes, Dr. Hadler says.
There are, however, some key differences in how ankylosing spondylitis affects men and women. For one, it takes women significantly longer to get the correct diagnosis — about 9 to 14 years on average for women versus five to seven years for men. Some explanations for this discrepancy include the 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.”
Some people also assume, incorrectly, that men experience more severe ankylosing spondylitis symptoms than women, when in fact the impact of the condition is much more equal. One of the reasons for this mistaken perception is probably due to the fact that men are more likely to have worse hip and spine changes due to the disease, as seen in X-ray images, compared with women, who tend to have slower development of these types of changes that show up in scans.
3. Myth: Ankylosing Spondylitis Is Always Diagnosed From Back Pain
It’s actually hard to diagnose ankylosing spondylitis based only on back pain because back pain is so common. “Hardly anyone goes one year without a backache,” Hadler says. 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, Hadler notes.
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.
4. Myth: Ankylosing Spondylitis Only Affects the Back
Chronic back pain is indeed a very common clue in making a diagnosis, since ankylosing spondylitis primarily affects the spine — but it can also affect other joints, including the shoulders, ribs, hips, knees, and feet. Inflammation from ankylosing spondylitis can also affect other parts of the body, such as the digestive system or the eyes, leading to a condition called uveitis.
In fact, ankylosing spondylitis impacts the eyes in more than 30 percent of people who have it. Less commonly, ankylosing spondylitis may impact your lungs or heart.
5. Myth: Rest Is One of the Best Ways to Combat Ankylosing Spondylitis Pain
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.
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 is specifically tailored to your needs.
6. Myth: You Shouldn’t Take Nonsteroidal Anti-Inflammatory Drugs (NSAIDs) if You Have Ankylosing Spondylitis
Some people are hesitant to take NSAIDs for ankylosing spondylitis because they’ve heard that 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, Rubenstein says.
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. If NSAIDs aren’t enough to relieve the pain, prescription medication options are available.
7. Myth: Ankylosing Spondylitis Always Results in a Fused Spine
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 of the symptoms you’re experiencing and ask which treatment options may help delay or prevent disease progression.
The Takeaway
Ankylosing spondylitis is a form of arthritis that mainly affects the spine, but it can also impact other joints and organs. Despite misconceptions about ankylosing spondylitis, it is not especially rare and can it 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 it’s important to speak to a doctor about medications that can help prevent or slow disease progression.
Sian Yik Lim, MD, is a board-certified rheumatologist at Hawaii Pacific Health. He is a clinical certified densitometrist, certified by the International Society of Clinical Densitometry. He completed his rheumatology fellowship at Massachusetts General Hospital and was also a research fellow at Harvard Medical School. His research interests include osteoporosis, gout, and septic arthritis. Dr. Lim has published in JAMA, Current Opinions in Rheumatology, Osteoporosis International, Bone, Rheumatology, and Seminars in Arthritis and Rheumatism.
Lim has authored several book chapters, including one titled “What is Osteoporosis” in the book Facing Osteoporosis: A Guide for Patients and their Families. He was also an editor for Pharmacological Interventions for Osteoporosis, a textbook involving collaboration from a team of bone experts from Malaysia, Australia, and the United States.
Vanessa Caceres is a freelance medical writer for Everyday Health, Newsday’s Healthlink, and a variety of physician-geared publications and medical societies. She is based in Southwest Florida.
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