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The pain arose when Paige Cerulli was in high school. Gym class started with sit-ups and push-ups. After only five sit-ups, searing pain began creeping into her lower back, growing more intense until she completed the required 20 reps. Around the same time, her lower back began hurting when she stood for a long time. “It felt like my lower back was arched too far forward into my stomach, and the only way to relieve the pain was to dramatically hunch forward,” she says. Though she was very active—running or riding horses daily—when she went to the doctor, they brushed off her symptoms and said she was making up the pain to get out of PE.
As Cerulli grew older, things got so bad that she feared walking too far from home. “I was afraid I’d be in too much pain to get back,” she says. And sleeping was almost impossible. “After about three hours each night, I would wake up to intense lower back pain that I could only relieve by shifting around and curling up so that my back curved forward,” she explains. Still, physicians continued to dismiss Cerulli, which made her question herself. But at the same time, she could remember a time when she didn’t live in pain. “I suspected there was something significantly wrong with me. I wondered if I had some sort of spinal deformity,” she recalls.
Finally, about two years ago—20 years since the pain cropped up—she met with a rheumatologist, who diagnosed her with ankylosing spondylitis, a type of axial spondyloarthritis (AxSpA). This mouthful of a condition is a chronic type of arthritis that causes spine inflamation. Patients like Cerulli will often have symptoms like debilitating back pain and stiffness that worsen with rest. “Each morning, getting out of bed is very difficult, and I basically hobble around during the first two minutes of standing and walking,” Cerulli says.
Although four out of five people with AxSpA have symptoms before the age of 30, like Cerulli, it can take years to properly diagnose. Read on to learn the symptoms of the condition, how it’s diagnosed, and the most common treatments.
What is axial spondyloarthritis?
Axial spondyloarthritis is a type of arthritis caused by chronic inflammation. It causes pain and swelling in the spine and the sacroiliac (SI) joints, where the spine and pelvis connect. “It’s a paradoxical disease,” explains Marina N. Magrey, MD, the director of the Spondyloarthritis Center and division chief of rheumatology at University Hospitals in Cleveland, Ohio. “Patients develop bone loss and, at the same time, they develop bone spurs [or growths] called syndesmophytes in the spine. This causes the bones in the spine to start fusing.”
There are two types of axial spondyloarthritis:
- Non-radiographic axial spondyloarthritis (nr-axSpA): This is when the damage caused to the spine and SI joints doesn’t show up on x-rays.
- Ankylosing spondylitis (AS): This is when the damage can be seen on X-rays.
Not every case of nr-axSpA progresses to AS. According to research, 5 to 25% of patients with nr-axSpA develop AS within two to eight years of their diagnosis, and almost 30% develop it within 10 or more years.
There are two main symptoms of axial spondyloarthritis—and a few associated health issues.
Though axial spondyloarthritis doesn’t have many symptoms, the main ones can significantly impact people’s lives. The condition can also cause other health issues like eye and stomach pain.
People with axial spondyloarthritis typically notice their back pain before their 45th birthday. The pain worsens over time, lasts for more than three months, and may spread to the hips and butt. “It’s a peculiar pattern of back pain that we call inflammatory back pain,” Dr. Magrey says. “The pain is worse after laying for some time at night—it often wakes people up in the early hours of the morning. Additionally, unlike mechanical back pain, which usually comes on with activity, this comes on with rest.”
On top of this, people with the condition may notice that their spin feels stiff. Combined with the pain, it can limit their mobility. “They have difficulty in their day-to-day activity, like bending, putting on socks, turning their neck while driving—stuff [many people] take for granted,” Dr. Magrey says.
This isn’t just being tired. People with axial spondyloarthritis say they lack energy, struggle to perform at work and doing physical activity, and notice changes in their mental health.
It’s unclear exactly why this pervasive fatigue occurs. One reason may be the underlying inflammation: This triggers the release of cytokines, chemical messengers that cause fatigue. Then there’s the fact that sleep is anything but easy when you’re stiff and in pain. Lack of sleep then exacerbates pain, creating a vicious cycle.
Up to one third of people with axial spondyloarthritis will develop uveitis, or eye inflammation. These people often report eye pain, red eyes, blurry vision, and sensitivity to light.
This is another issue that scientists haven’t yet figured out. Two theories about the connection between AxSpA and uveitis are that it may have something to do with genetics or changes in the gut microbiome. Steroid eye drops may help ease the inflammation and symptoms.
As if back pain isn’t bad enough, axial spondyloarthritis also commonly causes inflammatory bowel disease (IBD). The two main types of IBD, Crohn’s disease and ulcerative colitis, affect different parts of the digestive tract, but they cause similar symptoms: diarrhea, nausea, and stomach pain. Treatment for IBD usually calls for medication, though some people require surgery.
It’s known that axial spondyloarthritis and psoriasis (an autoimmune disease that causes thick, red skin with silvery scales) often occur together. What’s unclear is which occurs first and exactly why these conditions overlap, though both are inflammatory.
Inflammation and stiffness in the upper spine and rib cage may lead to chest discomfort and shortness of breath. Axial spondyloarthritis may also lead to impaired lung function, even if you don’t have any symptoms.
Diagnosing axial spondyloarthritis is a process.
People deal with axial spondyloarthritis for a long time—on average 13 years—before receiving an accurate diagnosis. “A lot of people ignore it in the beginning,” Dr. Magrey says. “They think it’s routine back pain and that over-the-counter painkillers or exercise can help.” Additionally, providers may not be aware of the condition, which can lead to misdiagnosis.
To make matters worse, no one test can diagnose axial spondyloarthritis. Instead, doctors often use a combination of questions and tests, including:
Physical exam: Doctors check your spine, pelvis, and hips for any signs of inflammation and pain. They may also move your joints through various movements to check your mobility.
Medical history: Be prepared to discuss your symptoms in detail as well as your personal and family health history, particularly any types of arthritis. Don’t be surprised if your provider diagnoses you with other conditions, like uveitis, psoriasis, or an inflammatory bowel disease. All of these are associated with axial spondyloarthritis.
Blood tests: Doctors may check your level of something called C reactive protein, or CRP. This marker of inflammation is often elevated in people with AS. They may also test for the HLA-B27 gene. Between 80 and 95% of people with AS have this marker. However, it’s less common among people with nr-axSpA, especially among women.
X-ray and/or MRI: A standard X-ray may pick up inflammation in the SI joints as well as “bamboo spine,” a condition where vertebrae in the spine fuse together. However, an X-ray may not detect subtler signs of the disease. So, if your X-ray shows nothing, your provider may order an MRI, which can show your doctor any signs of inflammation along the spine and in the SI joints more carefully.
Treatment for axial spondyloarthritis is often progressive.
“The goal of treatment is to decrease pain, stiffness, and fatigue and improve overall quality of life,” Dr. Magrey says. Physical therapy is often a big part of AxSpA treatment, as are pain medications. If one drug doesn’t work, your provider will likely prescribe a more potent pain reliever.
Doing specific exercises and movements with a trained physical therapist has been shown to improve function and mobility and reduce pain, fatigue, and even inflammation and joint damage. The focus is on strengthening and stretching the back, Dr. Magrey says.
A first-line treatment, over-the-counter NSAIDs like ibuprofen (Advil) and naproxen (Aleve), may provide some relief. But most patients need prescription anti-inflammatory options to feel a difference.
If prescription NSAIDs fail to provide sufficient pain relief after four to six weeks, your doctor may prescribe a TNFi such as adalimumab, infliximab, or etanercept. As the name implies, these injections block TNFs, which are proteins that cause inflammation.
IL-17 is a cytokine, or protein, that cause inflammation. IL-17 inhibitors like secukinumab are typically only prescribed if NSAIDs and TNFis don’t help. Like TNFis, IL-17 inhibitors have been shown to decrease pain while improving mobility and quality of life. “By reducing inflammation, there is a marked reduction in pain and stiffness, and it prevents damage and fusion. If you use them, over time, you can slow the radiographic progression of the disease,” Dr Magrey says of both IL-17 and TNF inhibitors.
JAKs are enzymes that regulate cytokine signaling, so—you guessed it—they play a role in inflammation. Though less studied than TNFis and IL-17 inhibitors, JAKs inhibitors also appear to relieve pain and fatigue, improving quality of life.
Lifestyle changes can also help.
Although medication and PT are the main treatments for axial spondyloarthritis, don’t discount your everyday habits.
Along with physical therapy, staying active is key to managing axial spondyloarthritis. Walking, HIIT, and mind-body exercise have all been found to reduce markers of inflammation, pain, fatigue, and stiffness while increasing physical function and quality of life in people with the disease. Find what feels good for you and what you can stick with.
“You will never get better if you keep smoking,” Dr. Magrey says. “It’s a risk factor for disease progression.” Smoking appears to increase inflammation and is associated with more and worse symptoms of axial spondyloarthritis, including pain, spinal stiffness, reduced mobility, and overall poor functioning.
There’s little research on diet and axial spondyloarthritis. According to one study of 278 people with the condition, eating lots of ultra-processed foods and little fiber and omega-3 fatty acids were all associated with increased “disease activity” or symptoms. This makes sense since fiber and omega-3s have been shown to reduce inflammation, while ultra-processed foods are believed to have the opposite effect. Because of this, experts recommend prioritizing foods shown to decrease inflammation, such as vegetables, fruits, nuts, seeds, whole grains, fish, lean poultry, and healthy fats like olive oil and avocado.
Overall, being aware of axial spondyloarthritis may help you avoid the pain and frustration that Cerulli faced. “I think that if I had known of the condition, I might have been able to specifically ask a doctor whether I might have [it], and I might have been diagnosed sooner,” she says.
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