Ankylosing Spondylitis

Is it possible to live a good life with ankylosing spondylitis?

People with ankylosing spondylitis can maintain a good quality of life through appropriate treatment and regular exercise.^{1, 2} This chronic inflammatory disease primarily affects the spine and the joints between the lower spine and the pelvis. Symptoms vary from person to person. Medical care and physical therapy help relieve pain and maintain activity levels.

What is Ankylosing Spondylitis?

Ankylosing spondylitis is a chronic inflammatory disease that primarily affects the spine and the joints of the pelvis.³ It belongs to the family of spondyloarthropathies, a group of diseases that can also affect other joints and tendon attachment sites. Over time, some people develop fusion of the vertebrae, the bones of the spine.^{4, 5} This progression varies widely and does not occur in everyone.

The word “ankylosing” refers to ankylosis, a significant loss of mobility that can result from the fusion of joints. Treatments can reduce symptoms, but their effect on bone changes is harder to determine. A review published in 2020 did not demonstrate a clear slowing of these changes in its primary analysis of TNF inhibitors, drugs that target a substance involved in inflammation. A benefit was only observed after at least four years in the analysis of the studies with the lowest risk of methodological errors.⁶

Who is Most at Risk for Ankylosing Spondylitis?

Ankylosing spondylitis is more common in men and in people who carry the HLA-B27 genetic marker or who have a close relative with the condition. Symptoms usually begin during adolescence or early adulthood, often before age 45. A later onset is still possible.⁷ The forms of the disease that cause visible changes on X-rays affect men more often, but the disease can also affect women.⁸

Studies on spondyloarthritis indicate that it takes longer to diagnose the condition in women.⁹ The prevalence of ankylosing spondylitis varies across populations. A review estimated this prevalence at 0.02% in sub-Saharan Africa and 0.35% in the Arctic communities studied; these figures do not represent an estimate specific to Quebec.¹⁰ The HLA-B27 marker increases the risk, but the majority of people who carry it do not develop the disease.^{11, 12}

Having a parent, sibling, or child with ankylosing spondylitis also increases your risk.¹³ However, a family history or a positive HLA-B27 test result alone is not sufficient to make a diagnosis.

What are the symptoms of ankylosing spondylitis?

Ankylosing spondylitis primarily causes lower back pain and stiffness upon waking, which are often relieved by movement.^{14, 15} The pain may wake the person up at night. Symptoms may come and go in flare-ups, with periods of remission, or remain present continuously.^{16, 17}

Common Symptoms

Back pain that lasts more than three months—especially if it began before age 45—should be evaluated when accompanied by signs of inflammation. It is not necessary to wait three months to see a doctor. The duration of the pain alone is not enough to identify the condition.

Inflammatory pain often improves with exercise and does not improve with rest. It may wake the person during the second half of the night. Morning stiffness may last more than 30 minutes and does not necessarily subside after that time. These characteristics guide the evaluation, but none of them alone distinguishes spondyloarthritis from other causes of back pain.¹⁵

Some people develop hyperkyphosis, which is a severely rounded back. Severe deformities are sometimes evaluated for surgical treatment.¹⁸ Exercises help maintain existing mobility and improve function. This benefit does not prove that they prevent bone deformities or vertebral fusion.

The pain may affect one buttock and then the other. It may be related to the sacroiliac joints, which connect the sacrum—the bone at the base of the spine—to the pelvis. This alternating pattern may suggest inflammatory pain, though it does not, on its own, confirm the condition.¹⁵

Other possible symptoms

The condition can also affect the hips, knees, or shoulders. Joint pain may therefore accompany back pain. Pain at the points where tendons attach to bones may also occur.⁸

Fatigue is common. A review of axial spondyloarthritides—a group of diseases that includes ankylosing spondylitis—estimated the prevalence at approximately 56%, with significant variations among studies. Greater fatigue was associated with a lower quality of life.¹⁹ Sleep disturbances are also associated with pain, fatigue, and disease activity, although the nature of these relationships has not been clearly established.²⁰ The disease may be accompanied by eye inflammation called uveitis, psoriasis, or inflammatory bowel disease.⁸

Ankylosing spondylitis is associated with a higher cardiovascular risk. A Swedish study found a 30–50% relative increase in certain heart problems, strokes, and blood clots in the veins. This does not mean that 30–50% of people will experience these complications.²¹ Medical follow-up also helps monitor risk factors, such as blood pressure and smoking.

What are the serious symptoms to watch out for?

Serious signs to watch for include new weakness in the legs, changes in bladder or bowel control, a red and painful eye, and unusual pain following a fall. These signs require urgent medical evaluation, depending on the situations described below.

Severe or worsening weakness, paralysis, or significant loss of sensation in one or both legs warrants an immediate visit to the emergency room. A new loss of balance or coordination while walking should also be evaluated without delay.

New difficulty urinating, an inability to urinate, new leakage of urine or stool, or a loss of sensation around the genitals or anus warrants an immediate visit to the emergency room. Pain that radiates down both legs can also be a cause for concern. These signs may indicate nerve compression at the base of the spine.²²

A red, painful eye, sensitivity to light, or blurred vision requires a same-day eye evaluation, as uveitis must be treated promptly.²³ New, severe neck or back pain following a fall or impact—even a minor one—also requires urgent evaluation, especially if the spine has become stiff or fragile. While these complications are not the usual cause of lower back pain, their rarity should not delay seeking medical attention.

What are the causes of ankylosing spondylitis?

Ankylosing spondylitis is likely the result of several genetic and environmental factors, but its exact cause remains unknown.³ The HLA-B27 marker plays an important role in risk. It is present in many people with the disease, but it is not sufficient on its own to cause the disease or to confirm the diagnosis.

Researchers are studying the interactions between genes, the immune system, and the environment, particularly gut microbes. The exact role of these factors remains to be determined; infection has not been proven to be a cause in every person with the condition.^{24, 3} Inflammation can affect the areas where tendons and ligaments attach to bone, known as entheses.⁴ It contributes to pain and stiffness, but does not alone explain all the differences in symptoms among individuals.

This condition is different from others like Forestier's disease, which also causes spinal stiffness but is not inflammatory.

How is ankylosing spondylitis diagnosed?

A doctor diagnoses ankylosing spondylitis by considering a combination of symptoms, physical examination, imaging, and blood tests.^{25, 26} No single finding is sufficient on its own. The doctor looks at the onset of symptoms, their progression, morning stiffness, the effect of rest and movement, as well as personal and family history.

A physical examination assesses spinal movement and looks for other signs of the disease. An X-ray of the sacroiliac joints may reveal bone changes. Magnetic resonance imaging (MRI) may show signs of inflammation when X-rays do not explain the symptoms.

Blood tests can screen for the HLA-B27 marker and measure markers of inflammation, such as C-reactive protein and erythrocyte sedimentation rate. A negative HLA-B27 result or normal markers of inflammation do not rule out the disease.²⁷

The doctor selects the tests based on the patient's overall symptoms. A consultation with a rheumatologist—a specialist in inflammatory joint diseases—may be necessary.

An MRI can detect inflammation of the sacroiliac joints before visible changes appear on an X-ray.²⁸ However, the results must be interpreted in conjunction with the patient’s symptoms and a physical examination, as an abnormal image does not always confirm the disease.

When should you see a physiotherapist for ankylosing spondylitis?

You can seek physical therapy as soon as back pain or stiffness begins to limit your activities, provided there are no warning signs as described above. If your symptoms suggest spondylitis, you should also schedule a medical evaluation. Physical therapy for lower back pain can begin during this process and complement medical treatment.

You can see a physical therapist directly. They will assess your range of motion, functional abilities, and symptoms, and then refer you to a doctor if necessary. A suspected inflammatory condition requires medical evaluation; exercises are not a substitute for this evaluation.

What physiotherapy treatments are available for ankylosing spondylitis?

Physical therapy for ankylosing spondylitis combines tailored exercises, activity guidance, and, if necessary, gentle manual techniques. A comprehensive evaluation allows this treatment to be tailored to your abilities. The physical therapist assesses your spinal mobility, strength, breathing, and the activities that cause you problems. The therapist also looks for signs of nerve damage if your symptoms warrant it.

Assessing your posture habits helps you find comfortable positions and ways to vary your activities. Observing the quality of your movements allows you to tailor exercises to your specific challenges, without trying to maintain a single posture all day long. Strength and mobility measurements are used to track your progress.

Joint mobilization and manipulation refer to different techniques. Mobilization involves slow movements tailored to the joint. A small study observed an improvement in mobility with a program that combined mobilization, patient-performed movements, and home exercises; however, this study does not allow for isolating the effect of mobilization.²⁹ Another small study focused on manual techniques applied to soft tissues and exercises; it did not evaluate rapid spinal manipulations.³⁰ The choice of treatment should take into account the mobility and strength of your spine. Rapid spinal manipulations are contraindicated if vertebrae are fused or if advanced osteoporosis has weakened the spine.³¹

The exercises prescribed for home use are designed to maintain or improve your functional abilities. Stabilizer muscle exercises work the core muscles. Extension and mobility exercises for the thoracic spine are intended to maintain range of motion in the upper back. While these exercises are beneficial for mobility, they do not prevent kyphosis. Strength and endurance exercises help maintain the functional abilities necessary for your daily activities.

Your physical therapist will teach you how to adjust the duration, intensity, and frequency of your activities. The program can be adapted during a flare-up and then gradually increased based on your tolerance.

Current treatments do not cure ankylosing spondylitis, but they can reduce symptoms and lead to periods of low disease activity. The doctor may prescribe anti-inflammatory medications or, depending on the course of the disease, medications that target specific immune system responses.^{32, 33} An exercise program complements these treatments and remains beneficial even when symptoms subside.

What can you do at home for ankylosing spondylitis?

At home, people with ankylosing spondylitis can move around regularly, change their positions, and do exercises suited to their abilities. Short breaks are still possible, depending on their symptoms. The goal is to avoid long periods of inactivity and to maintain a level of activity that is tolerable.

If you are not very active, short walks and mobility exercises tailored to your back can be a good place to start. Gradually increase the duration or intensity based on your tolerance. If you are already active, continue with activities that are compatible with your symptoms and the advice of your healthcare team.

Upper-back stretching and mobility exercises are designed to maintain your range of motion without straining a spine that has become stiff. Walking, water exercises, or swimming can be part of your program, depending on your preferences. Yoga or Pilates can also be adapted to your abilities; avoid forced positions and seek advice if your spine is fragile or has undergone spinal fusion.

Ankylosing spondylitis can cause the joints between the ribs to stiffen and limit the expansion of the chest during breathing.³⁴ One study observed an expansion of 2 cm or less in some individuals, but this threshold does not apply to all people with the condition.³⁵ Chest wall mobility and measures of respiratory capacity do not always correlate.³⁶ Deep-breathing exercises may be part of a personalized program.

If your symptoms persist, worsen, or further limit your activities, have your physical therapist and doctor reevaluate your program. New pain following an impact or the appearance of a warning sign requires an urgent evaluation; do not wait to see if the exercises have an effect.

What conditions can be associated with ankylosing spondylitis?

Ankylosing spondylitis may be accompanied by uveitis, psoriasis, or inflammatory bowel disease, and may coexist with other causes of back pain.Lumbar osteoarthritis and pain in the small joints of the back—sometimes called lumbar facet syndrome—may also be considered based on the examination. New-onset pain should not automatically be attributed to ankylosing spondylitis.

A lumbar disc herniation or lumbar radiculopathy—damage to a nerve as it exits the spine—may also explain certain symptoms. The evaluation must distinguish these causes from an inflammatory flare-up or a fracture. Treatment takes into account the stiffness of the spine and bone health.

Why is exercise essential for ankylosing spondylitis?

Regular exercise helps people with ankylosing spondylitis reduce pain, improve mobility, and maintain their activities.^{37, 38} Some programs that include breathing exercises also improve measures of respiration and chest expansion.³⁹ These benefits support regular exercise tailored to symptoms, in addition to medical care.

A comprehensive exercise program can combine spinal movements, appropriate stretches, strength training, cardiovascular activity, and deep-breathing exercises. The choice of exercises and the progression of the program depend on your abilities, the activity of your disease, and your goals.²³

How can I get help for ankylosing spondylitis?

For help with ankylosing spondylitis, see your doctor for disease management and a physical therapist to help you adapt your activities and exercises. Our physical therapists can assess your challenges and suggest pain management strategies you can use in your daily life.

Regular follow-ups allow us to tailor your care to changes in your symptoms and your goals. You can schedule an appointment for a physical therapy evaluation. If you notice any warning signs, please seek care immediately, following the recommendations provided above.

Sources

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