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.
Enthesitis (Inflammation Where the Ligaments Attach to the Bone)
Inflammation of the enthesis, where the joint capsules, ligaments or tendons attach to the bone, is a hallmark of ankylosing spondylitis (AS). This can be felt in multiple areas of the body where your 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, in which case 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.
It is the process of healing and repair following inflammation of the enthesis 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 the spondylitis.
The fusion of the spine can sometimes lead to a forward curvature of the spine, 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 and to take your medicine on schedule so that you can maintain a daily exercise schedule which over time, will make you feel better. 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 spondyltis (AS). The 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” and it can be very misleading to both the doctor and affected person.
Hip involvement typically is more common in younger people when the symptoms first begin. It often carries with it a more severe prognosis (course of disease). Generally speaking, shoulder involvement is mild.
Adults with spondylitis often have chest pain (costochondritis) that mimics the heavy chest pain of cardiac 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. What often happens, over time, is that the joints between the ribs and spine, and where the ribs meet the breastbone in front of the chest, develop decreased chest expansion because of long-term inflammation and scarring of the tissues. If the pain is found to be spondylitis-related and you find yourself unable to practice the 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 teach you how to maximize air intake by learning a technique called “diaphragm breathing.”
About ten percent of people with spondylitis experienced inflammation of the jaw. This can be particularly debilitating causing difficulty in fully opening the mouth to eat.
Read “Ankylosing Spondylitis & Dentistry” by Dr. Craig Gimbel from the Fall 2010 Issue of Spondylitis Plus
Iritis or Anterior Uveitis (Inflammation of the eye)
About one third to 40% of people with spondylitis will experience inflammation of the eye at least once. Iritis is a serious complication which requires immediate medical attention from an eye doctor.
Symptoms often occur in one eye at a time, and they may include redness, pain, sensitivity to light and skewed vision. An ophthalmologist (or optometrist) can use a special slit lamp microscope to distinguish iritis from other causes of eye redness or irritation.
Normally iritis is treated using cortcosteroid eyedrops and dilating agent eyedrops.
Fatigue In Ankylosing Spondylitis
“Fatigue has been recognized as one of the major complaints among patients with inflammatory rheumatic diseases,” state Croatian researchers in a recent study.
But what causes fatigue in spondylitis?
Fatigue can be caused by many things related to spondylitis such as loss of sleep because of physical discomfort. But it can also be a by-product of the disease itself.
Spondylitis causes inflammation. When inflammation is present, your body must use energy to deal with it. The release of cytokines*during the process of inflammation can produce the sensation of fatigue as well as mild to moderate anemia. Anemia may also contribute to a feeling of tiredness. Treating the inflammation caused by ankylosing spondylitis can assist in decreasing fatigue and anemia. We recommend discussing treatment options with your doctor.
Fatigue can be a big part of pain. In addition to speaking with your doctor, ask your physical therapist to teach you how to move with efficiency so that you may minimize fatigue and frustration.
The Croatian researchers conclude that, “…the intensity of fatigue should be assessed more frequently in patients with inflammatory rheumatic diseases as a marker of both disease activity and functional ability.”
How does fatigue feel?
For our May / June 2004 issue of Spondylitis Plus, we asked our posters on our message board to tell us what the fatigue in ankylosing spondylitis feels like. Here are some of their responses:
“Some days it feels like wanting to blend into the sofa, so that none of my family members will notice that I am there and ask or expect me to do anything.”
— Christie, Huntington Beach, CA
“I liken it to wearing a jacket containing 40 pound weights in each pocket, while slogging through a vat of molasses with suction cups glued to the bottom of your shoes.”
— Michael, New York, NY
“No amount of sleep will reduce the fatigue that makes me feel like I’m walking around all day with one of those lead aprons that they use at the dentist’s office for x-ray protection. It feels like when you experienced a BAD case of the flu – pre AS.”
— Tim, Phoenix, AZ
“I lie in bed at night and will myself to move because it hurts so much to actually do it. In addition, when I ‘wake up’ in the morning, if I actually managed to get some sleep, I feel like I haven’t even been in bed. It’s such an overwhelming sense of exhaustion. Arms and legs feel like lead – and there is a sense of failure – even though you know this is not the case.”
— Crystal, Cleveland, OH
Rare Complications in Disease of Long Duration
A small percentage of people with long-standing spondylitis may go on to develop rare, but serious complications. This is one of the reasons why it is important for everyone with spondylitis to be checked by a rheumatologist at least once a year. That way, any potentially threatening complications can be caught early and treated before permanent damage has occurred.
Neurological Complications – Cauda Equina Syndrome
Rarely, people with advanced (very long-term) ankylosing spondylitis (AS) may have problems resulting from the scarring of the bundle of nerves at the base of the spine. This condition can have a significant impact on a person’s quality of life, and can cause urinary retention and/or incontinence, loss of bowel control, sexual dysfunction and problems causing pain and weakness of the legs. If you have long-standing AS and are suffering with some of these symptoms, your rheumatologist will be able to refer you to neurologist for consultation.
The Kidneys – Amyloidosis
Some people develop problems with the kidneys due to long-term treatment with nonsteroidal anti-inflammatories or other medications. This complication has become very rare in North America.
A small number of people with spondylitis will display signs of chronic inflammation in the base of the heart – around the aortic valve and origin of the aorta (i.e. that vessel which takes all blood from the heart to be distributed throughout the body). Years of chronic and silent inflammation at these sites can eventually lead to heart block and valve leakage, sometimes requiring surgical treatment. Although recognized, these cardiac lesions probably are seen in fewer than two percent of all patients with spondylitis, and nearly always in males. The lesions are readily detectable by the physician’s examination and when necessary, cardiac testing.
Poor chest wall movement may result in decreased vital capacity and a few patients develop scarring or fibrosis at the top of the lungs detected only by routine chest x-ray (recommended every five years unless there is a special need). Sometimes people have functional lung impairment which means that it can take longer for colds and other upper respiratory infections to heal. Smoking is absolutely contra-indicated in AS. Please see the Chest Involvement section above.