• Ankylosing spondylitis (AS) is a progressive condition, but treatment can slow that progression.
• If left untreated, AS can lead to spinal fusion, mobility issues, and disability.
• As it progresses, AS can affect other areas of the body, including the heart and eyes.

Ankylosing spondylitis is a progressive form of inflammatory arthritis. In AS, the immune system mistakenly attacks the spine, leading to pain and joint damage. AS is also referred to as radiographic axial spondyloarthritis or radiographic axSpA.

The progression of AS varies from person to person. Although most people with the condition notice back pain early on, others may have hip or knee pain. If left untreated, new bone can form in the spine, causing painful spinal fusion. Not everyone with AS will develop this complication.

Other joints may also be affected, such as the neck, shoulders, jaw, hips, hands, feet, fingers, and toes. Because AS causes progressive inflammation throughout the whole body, some people develop complications outside the joints, such as eye problems, heart issues, fatigue, depression, and muscle weakness.

Early Stages

As with other types of inflammatory arthritis, like rheumatoid arthritis, early diagnosis and treatment for AS are important for stopping or slowing the disease. This can help prevent joint deformity, new bone formation in the spine, disability, and associated health problems. Structural damage caused by AS is generally not reversible. Below are symptoms you may notice when AS is in its early stages.

Back Pain

People with AS usually experience lower back pain as their first symptom. The disease starts at the sacroiliac joints, where the lumbar spine connects to the pelvis. Pain can be on one side or both in the beginning.

In the early stages of disease activity, people often develop back pain slowly over weeks or months. In contrast to mechanical back pain, such as pain after lifting something heavy, pain from AS is inflammatory. It lingers and may get worse. Inflammatory pain may feel worse after sleeping or sitting for a long time and may improve with movement.

Stiffness

AS primarily affects the joints in the spine. When the joints don’t move for a period of time, they become stiff. Add inflammation to the picture, and it can be very painful when a person tries to get up and move again.

Fatigue

Although fatigue tends to increase significantly over the course of the disease, it can also be an early indicator to help rheumatologists diagnose AS. Because AS is an inflammatory disease, the body has to constantly work harder than normal to fight the inflammation. The extra energy used leaves a person feeling fatigued.

One MySpondylitisTeam member lamented, “I can muscle through pain, but it is very hard to function when you feel like the plug on the drain has been pulled and you are sitting on empty.”

Later Stages

The spine may be the primary source of pain in AS, but other joints may become involved as well. When this happens, tissues like muscles and tendons can be affected. In addition, complications in other organs — such as the eyes and heart — can occur.

Painful Joints

When AS progresses, other joints may become inflamed and painful. As a result, the muscles, ligaments, and tendons surrounding these joints may become weak. Aside from the back, commonly affected areas include the hips, shoulders, knees, ribs, and heels.

“My body feels broken, bruised, beaten, and wrapped in barbed wire all the time,” explained a MySpondylitisTeam member.

Eye Inflammation

Some people with AS may experience a painful, red eye caused by iritis or uveitis (inflammation of the iris or of tissue within the wall of the eye). This can cause blurred vision or sensitivity to light. If left untreated, vision damage or even blindness can occur. Doctors typically start by treating the inflammation with topical corticosteroids.

Read more about spondylitis eye inflammation.

Heart Complications

A small percentage of people with AS will have cardiovascular problems associated with the disease. These include:

• Ischemic heart disease, also called coronary artery disease — A condition in which narrowed blood vessels prevent the heart from getting enough blood and oxygen
• Conduction problems — Conditions that cause problems with the heart’s electrical system, leading to abnormal heartbeats
• Aortitis — Inflammation of the blood vessel that carries blood from the heart to other parts of the body
• Aortic valve diseases — Conditions that affect the valve separating the heart from the aorta, causing the valve to not open wide enough or not close properly
• Cardiomyopathy — A condition in which the heart can’t effectively pump blood

Treatment focuses on managing symptoms of AS and preventing complications.

Read more about how AS affects the heart.

Gastrointestinal Problems

The inflammation associated with AS may cause abdominal issues, such as diarrhea. In some cases, it can lead to Crohn’s disease, a type of inflammatory bowel disease.

Brain Fog

Fatigue and poor sleep can lead to brain fog. Brain fog is a feeling of being mentally fuzzy or having a difficult time focusing. It can be hard to function at work and at home if you are experiencing brain fog.

One MySpondylitisTeam member vented, “I’m amazed at how many other people are going through this, too. I started mixing up words right after my neck surgery. It gets so frustrating. My kids made fun of me, not realizing how much it bothered me.”

Doctors may try to help reduce brain fog by treating the inflammation associated with AS. This can lessen the energy demand on the body and improve sleep.

Advanced Stages

In advanced cases of AS, new bone formation in the spine leads to spinal fusion. The new bone formation is called ankylosis, which gives ankylosing spondylitis its name. Spinal fusion results in immobility, kyphosis (rounding of the spine), and an increased risk of fracture of the bones in the spine.

Kyphosis gives the appearance of being bent forward even when you are trying to stand up straight. The fusing also prevents the rib cage from expanding, which makes it hard to take a deep breath. In rare cases, neurological complications such as cauda equina syndrome can occur (pressure and swelling of the nerves at the end of the spinal cord).

Treatment for Preventing Progression of Ankylosing Spondylitis

Although there is currently no cure for AS, there are many treatment options for managing symptoms and preventing disease progression. If left untreated, disease progression may significantly reduce a person’s independence and quality of life.​

AS treatments may include nonsteroidal anti-inflammatory drugs (NSAIDs) like ibuprofen, biologic drugs, and traditional disease-modifying antirheumatic drugs (DMARDs). Biologics include tumor necrosis factor-alpha (TNF-alpha) inhibitors and interleukin inhibitors. A newer class of treatments known as Janus kinase (JAK) inhibitors are also an option for treating AS. Physical therapy can help relieve symptoms and improve the function of the spine and joints.

Biologics, traditional DMARDs, and JAK inhibitors are used to slow disease progression while NSAIDs are generally used to control pain. Combining NSAIDs with a TNF inhibitor can slow inflammation in the spine.

Make sure to attend all follow-up appointments so that your doctor can monitor your progress through physical exams and tests like X-rays and MRIs. If your current treatment isn’t controlling your symptoms, ask your rheumatologist about other treatment options.

Read more about advanced treatments for ankylosing spondylitis.

Talk With Others Who Understand

MySpondylitisTeam is the social network for people with spondylitis and their loved ones. On MySpondylitisTeam, more than 88,000 members come together to ask questions, give advice, and share their stories with others who understand life with spondylitis.

Are you living with spondylitis? Share your experience in the comments below, or start a conversation by posting on your Activities page.