How Is a Person Affected?

Although ankylosing spondylitis (AS) and related diseases (SpA), sometimes collectively called spondylitis for short, are conditions primarily affecting the spine, other areas of the body can also be involved. Spondylitis does not follow the same course in everyone, even among family members. That said, there are some complications or symptoms that are more common than others. For instance, inflammation of the eye, or iritis, is very common, while neurological symptoms are very rare, and shoulder involvement appears somewhere in the middle. The chronic pain often caused from the inflammation can vary from person to person and range from mild to very severe.

SAA receives no government funding and relies on the generous donations from individuals to create and maintain the programs and services aimed at improving the futures of the 2.7 million Americans affected by spondylitis and its family of related diseases.

Enthesitis

Inflammation Where the Ligaments Attach to the Bone

Inflammation of the entheses, where joint capsules, ligaments, or tendons attach to bone, is a hallmark of ankylosing spondylitis (AS). This can be felt in multiple areas of the body, where doctor can check for pain and tenderness. The sites are sometimes referred to as "hot spots." They can lead to swelling and tenderness along the back, pelvic bones, sacroiliac joints, the chest, and the heel. The heel can be significantly affected, and the pain and tenderness can have a serious impact on a person's mobility. The two areas of the foot that can be affected are the Achilles tendon, at the back of the heel and the plantar fascia, at the base of the heel.

The Kidneys

Amyloidosis

Some people develop problems with the kidneys due to long-term treatment with nonsteroidal anti-inflammatories or other medications. This complication is very rare in North America.

Back and Spine

What Happens over Time

It is the process of healing and repair following inflammation of the entheses that eventually can lead to scarring of the tissues, which subsequently can lead to extra bone formation. Thus, in someone with very severe disease, the process of inflammation can lead, over many years, to a bony fusion of the ligaments in the spine and sometimes in other joints as well, which is called ankylosis. This can cause an increased risk of spinal fracture because of the restricted range of movement and the fact that the bone formed during fusion is inherently weak. Not everyone will go on to this stage of spondylitis.

Fusion of the spine can sometimes lead to a forward curvature of the spine, called kyphosis, causing a forward-stooped posture. Although this can happen in the most severe cases of AS, it is now far less common given the advances in treatment.

It is important to follow your doctor's instructions, take your medicine on schedule and maintain a daily exercise regimen, which, over time, will make you feel better and lead to better outcomes. It is also important to pay particular attention to your posture in order to avoid kyphosis. With the advent of the newer classes of medications, specifically the biologics anti-tumor necrosis factor-alpha agents), there is reason to believe that the natural course of spondylitis may be slowed or halted. More studies are needed to confirm this.

Hips and Shoulders

The hips and shoulders are affected in about one-third of people with ankylosing spondylitis (AS). Hip involvement usually comes on gradually, and although the pain often is felt in the groin area, it can sometimes be felt in other areas of the body, such as the knees or the front of the thigh. When this happens, it is called "referred pain," which can be very misleading to both a doctor and affected person. Hip involvement typically is more common in younger people when symptoms first begin. It often carries with it a more severe prognosis or course of disease. Generally speaking, shoulder involvement is mild.

The Chest

Adults with spondylitis often have chest pain (costochondritis) that mimics the heavy chest pain of unstable angina (acute heart attack) or pleurisy (the pain with deep breathing that occurs when the outer lining of the lung is inflamed). Anyone experiencing symptoms should seek medical attention to rule out a more serious condition. Over time, long-term inflammation of the joints between the ribs and spine, and where the ribs meet the breastbone in front of the chest, land scarring of tissue results in decreased chest expansion. If the pain is found to be spondylitis-related and you find yourself unable to practice critical deep-breathing exercises, which help maintain chest expansion, there are things that you can do to help yourself:

  • Use ice packs on the affected areas for short periods
  • Try gentle massage of the neck and shoulder area
  • Try deep breathing exercises after a hot shower or warm bath

Talk to your doctor about trying different medications.

Once your doctor has ruled out more serious problems, it might be helpful to take one or two sessions with a physical therapist or respiratory therapist, who can provide instructions on how to maximize air intake by learning a technique called "diaphragm breathing."

The Jaw

About 10 percent of people with spondylitis experience inflammation of the jaw. This can be particularly debilitating, causing difficulty in fully opening the mouth to eat.

Stay Informed

Contact Us

Spondylitis Association of America

PO Box 5872
Sherman Oaks, CA 91413

Email

info@spondylitis.org

Toll Free Hotline

(800) 777-8189 U.S. only
or (818) 892-1616

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