The “Other” Symptoms of Axial Spondyloarthritis (AxSpA)

Axial spondyloarthritis (axSpA) is an inflammatory disease of progressive lower back pain that can eventually lead to fusing of the vertebrae. Axial spondyloarthritis is a term that covers both radiographic axial spondyloarthritis (ankylosing spondylitis or AS) and non-radiographic axial spondyloarthritis (nr-AxSpA). Both cause joint inflammation in the spine and pelvis.

AxSpA usually affects younger people, starting before age 45. Common signs include back pain and stiffness in the morning that get better with movement, and pain in the buttocks that switches sides. If not treated, the bones in the spine can fuse, causing a “hunchback” posture and making it hard to move.

AxSpA can cause problems all over the body, not just in the back. It can affect your joints, fingers, eyes, and even your digestive system.

One reason for these widespread symptoms is genetics. Many people with axSpA have a gene called HLA-B27. New research is showing how this gene is linked to many other health problems. If you have axSpA and notice symptoms in other parts of your body, they might be connected to your condition.

These symptoms can help in diagnosing axSpA. They may provide clinical evidence that the back pain you are experiencing is an inflammatory disease, as opposed to a mechanical problem, says Ambreesh Chawla, MD, rheumatologist at Cleveland Clinic.

Pay attention to any changes in your body so you can work with your doctor to find the right treatment and improve your quality of life. Here are some subtle symptoms of axial spondyloarthritis that you might not think to mention to your health care provider but may be related to your axSpA.

Joint Symptoms of Axial Spondyloarthritis

In axSpA, inflammation can spread beyond the spine and pelvis to affect other joints in the body. Here are three common joint problems related to axSpA.

Dactylitis

Dactylitis is a swelling of the fingers and toes, often called “sausage fingers” because of the puffed-up look it gives to your digits. It is a combination of inflammation in the tendons and the individual joints of the fingers and toes. The swelling can come and go and the area affected can be painful, feel warm or hot, and make it difficult to move your digits. Dr. Chawla says dactylitis can often be a clue that leads to a diagnosis of axSpA.

The good news is that dactylitis can be treated to reduce symptoms. And early diagnosis and treatment of axSpA can help reduce symptoms of dactylitis.

Enthesitis

Enthesitis is when the spots where your tendons and ligaments attach to your bones become inflamed. These spots, called entheses, often face a lot of physical stress or repeated impact. When they get stressed, your body sends out inflammatory chemicals called cytokines. In response, your bone tissue might start creating new bone, similar to how it would if you had a fracture. This abnormal bone growth can lead to discomfort, pain, and stiffness.

A 2022 study in Frontiers in Immunology found that 78 percent of patients with axSpA had enthesitis, with the highest number of sites in the pelvis, but also in the chest wall, shoulder, knee, and foot.

Dr. Chawla may see patients with swelling, redness, and warmth at the enthesitis site. “It can be around elbows, knees, or achilles. It may be plantar fasciitis. It’s hard to know when the immune system is going to implicate other parts of the body,” he says. Like dactylitis, inflammation in these areas help support an axSpA diagnosis.

Synovitis

Synovitis is another common feature of axSpA. It involves swelling of the synovial membrane that lines certain joints, including those in the back, shoulders, knees, hands, feet, and wrists. Dr. Chawla mentions that a thorough joint exam is necessary to identify all joints with active synovitis to guide treatment effectively.

Non-Joint Symptoms of AxSpA

Axial spondyloarthritis can also cause several symptoms that aren’t related to the joints. These may be linked to genetics, psychological factors, or other reasons still being studied.

Uveitis

Do you have blurred vision, sensitivity to light, or eye pain? You might have anterior uveitis, an eye condition that affects up to one-third of people with axSpA.

The exact reasons for the connection between uveitis and axSpA are unknown. However, they share a common genetic link, particularly the HLA-B27 gene. According to a 2020 study in Therapeutic Advances in Musculoskeletal Disease, up to 40 percent of patients with acute anterior uveitis have an undiagnosed spondyloarthritis. The risk of developing uveitis increases the longer you have axSpA: there’s a 15 percent chance within the first 15 years of the disease and a 43 percent chance if you’ve had it for more than 30 years.

Other signs of uveitis include having a very red eye — usually just one — that is sensitive to light and may hurt to move. If you have these symptoms, you should see an eye doctor for a special exam called a slit lamp examination.

Inflammatory Bowel Disease

Abdominal pain and diarrhea are common symptoms of inflammatory bowel disease (IBD). The two main types of IBD are Crohn’s disease and ulcerative colitis. Other symptoms can include changes in bowel habits, rectal bleeding, and weight loss, all of which can be linked to AxSpA. Seeing a gastroenterologist and undergoing tests like stool studies, endoscopy, and colonoscopy can help diagnose IBD.

About 10 to 15 percent of people with axSpA also have IBD, according to a 2021 article in the Journal of Rheumatic Diseases. Research is ongoing to understand the connections between IBD and axial spondyloarthritis, including genetic, immunological, and environmental factors. It’s also not clear which condition comes first.

A proper axSpA diagnosis is very important because not all treatments work for both conditions. Good communication between your rheumatologist and gastroenterologist is key to getting the best treatment.

Fatigue

According to a 2023 study published in Rheumatology Advances in Practice, more than half of people with axSpA experience fatigue. A study found that fatigue is linked to a poorer quality of life. Fatigue can negatively affect your work habits and mental well-being.

The fatigue experienced with axial spondyloarthritis (axSpA) is more than just being tired. It’s a pervasive sense of weariness or lack of energy that can include brain fog. This fatigue isn’t usually relieved by a good night’s sleep and isn’t about being lazy. According to a 2021 article in the journal Rheumatology, research shows that fatigue is part of the inflammatory process of axSpA. Higher levels of inflammation and disease activity were found in patients who experienced fatigue.

“Inflammatory conditions are closely studied for both cognitive and physical fatigue,” says Dr. Chawla. “They take a toll on patients. We need to focus not just on the physical aspects of the condition, but on how patients are coping with their disease from a psychosocial perspective.”

Anxiety and Depression

If you have axSpA and are experiencing anxiety or depression, these may be connected. A 2022 study in the European Journal of Rheumatology found that 38 percent of axSpA patients had significant symptoms of anxiety, and 36 percent were diagnosed with depression.

Younger patients are more likely to experience anxiety or depression related to axSpA. These symptoms are also more common in those with high disease activity, sleep disturbances, and fatigue.

While it’s tempting to look for medical information online, misinformation can affect your emotional well-being. The study found higher rates of depression among those who believed that “doctors hide side effects of medications” and “all modern medicine used in axSpA treatment causes side effects.” Stay informed by asking your health care provider questions about your treatment and letting them know if you feel anxious or depressed.

Rare Manifestations of AxSpA

Axial spondyloarthritis can lead to various complications, especially in those who have had the disease for a long time. Dr. Chawla explains that these can include:

• Heart problems: conditions like aortic valve insufficiency
• Kidney issues: such as IgA nephropathy
• Lung problems: including upper lobe pulmonary fibrosis
• Bone issues: if the disease progresses to bone fusion, the affected area may become prone to fractures

“It’s important to be aware of your symptoms so a rheumatologist can evaluate them,” says Dr. Chawla. “Patient awareness will lead to prompt diagnosis, which will lead to early treatment. We want to avoid seeing a patient whose spine is already fused.”

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