Chronic back pain is the most common symptom of spondyloarthritis (also called spondylitis). However, back pain is also very common in the general population, which can make diagnosis challenging. As a result, it can take years for people to receive the correct diagnosis.

Studies estimate getting a diagnosis for radiographic axial spondyloarthritis (r-axSpA) — also called ankylosing spondylitis (AS) — can take an average of 6.7 years. AS is the most common form of spondylitis. This delay can be frustrating. It may affect how well people respond to treatment, their quality of life, and how the disease progresses.

Members of MySpondylitisTeam have expressed immense relief after getting the right diagnosis. “I was so glad to finally know what it was,” wrote one member. “It had been many years for me, and I was feeling like I was crazy, and thinking others thought the same thing. The condition I had finally had a name.”

If you’re feeling frustrated by not knowing what’s happening with your body, you’re not alone. Here’s what you can expect on the path to finding out if you have spondyloarthritis.

Review Your Family and Medical History

Getting diagnosed with spondyloarthritis usually begins with a visit to your doctor for a checkup. If you’re experiencing symptoms like back pain and stiffness, your first stop may be your primary care provider.

Your healthcare provider will ask about your concerns and symptoms. Be sure to mention any other symptoms you’re having, even if they don’t seem connected to spondyloarthritis. Skin rashes, digestive problems, or ongoing fatigue can be signs of different types of spondylitis or related conditions.

If there’s anything that seems to make your symptoms worse or better, let your doctor know. For example, people living with ankylosing spondylitis often feel less pain and stiffness after a warm shower or some types of exercise. Noticing these patterns can help your doctor tell the difference between ankylosing spondylitis and other causes of back pain, such as a bone fracture.

Your doctor will aim to rule out other health conditions and narrow down the list of possible causes before making a diagnosis. They may ask if you’ve had any past injuries or surgeries or other questions about your medical history.

If you know your family’s medical history, share this information at your appointment. Many health conditions, including some types of arthritis and autoimmune diseases, can run in families. Having a close relative with these conditions may increase your own risk.

Have a Physical Exam

After talking with your healthcare provider, they’ll perform a physical exam to help figure out what’s causing your symptoms. During the exam, your provider will look at your back and check your joints in other areas, like your hands, legs, and feet. They may look for swelling, tenderness, or discoloration, and they may ask you to move in different ways to check your range of motion.

If ankylosing spondylitis is suspected, your provider may ask you to take deep breaths to see if your ribs or chest feel stiff. Limited chest expansion can be a sign of inflammation around the ribs.

Other standard parts of a physical exam include checking your blood pressure, pulse, height, weight, and reflexes. Your provider may also examine your neck and look in your mouth, ears, or at other areas to check for signs of disease or inflammation.

Consider Seeing a Specialist

After discussing your family history and current symptoms, your doctor may recommend more tests before making a diagnosis of spondyloarthritis. Your healthcare provider might order these tests or refer you to a specialist who can help with diagnosis and treatment.

In the United States, the average wait time to see a specialist for AS is two months. If you feel you’re not getting the tests or care you need from your primary care provider, don’t hesitate to ask for a referral to a specialist.

The most common type of specialist for diagnosing and managing spondyloarthritis is a rheumatologist. Rheumatologists are doctors who focus on diseases that affect the immune system and cause inflammation, including different forms of arthritis.

“Spondyloarthritis (spondylitis) is a far cry from a bruised tailbone,” wrote a member of MySpondylitisTeam. “That’s what I got from every single doctor until I found a rheumatologist who gave me the correct diagnosis within three days!”

You may also benefit from seeing other specialists, such as:

• Dermatologists, especially if the skin and joint condition psoriasis is suspected
• Gastroenterologists, for digestive issues that may be related to spondyloarthritis
• Mental health professionals, who can help support your emotional well-being
• Ophthalmologists, who specialize in eye care and can check for conditions like uveitis (eye inflammation)
• Orthopedic surgeons, who may help if you need surgery for severe joint or bone problems
• Physical and occupational therapists, who can help improve mobility and daily function

Before making an appointment, you can contact your insurance company to find out which providers are covered in your network.

What Tests Confirm Spondylitis?

There isn’t a single test that can confirm spondyloarthritis, but a combination of lab tests and imaging can help doctors make a diagnosis.

Blood Tests

Blood tests can look for signs of inflammation in your body. Two common tests are the erythrocyte sedimentation rate (ESR) and C-reactive protein (CRP). These markers may be higher than normal in some people living with spondylitis, but not everyone will have elevated levels.

Genetic Testing

Genetic testing can also be used to check for the HLA-B27 gene, which is strongly linked to spondyloarthritis, especially AS. However, having this gene does not mean you will develop the disease. In fact, fewer than 2 percent of people with HLA-B27 go on to develop ankylosing spondylitis.

The usefulness of the HLA-B27 test depends on your background. For example, according to the Spondylitis Association of America:

• More than 95 percent of white people with AS test positive for HLA-B27.
• Close to 80 percent of individuals from Mediterranean countries with AS have the gene.
• Among African Americans with AS, only about 50 percent have the gene.

Imaging Tests

Physicians also use imaging tests, including X-rays and MRI, to look at the bones and joints inside your body. These scans can help spot signs of spondyloarthritis, like:

• Joint inflammation
• Bone erosion
• Fused bones
• Changes in the sacroiliac joints, where the lower part of your spine connects to your pelvis

If your provider suspects spondyloarthritis, they’ll recommend a treatment plan and monitor your progress. This may include a mix of medications, physical therapy, and lifestyle changes. Noticing how your symptoms respond to treatment can also help confirm the diagnosis.

Join the Conversation

On MySpondylitisTeam, people share their experiences with spondylitis, get advice, and find support from others who understand.

If you were diagnosed with spondyloarthritis, what was the process like? Let others know in the comments below.