Living With Ankylosing Spondylitis
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Ankylosing spondylitis is a chronic inflammatory disease that affects the spine and joints between the spine and pelvis. The joints between the spine and pelvis is often called the sacroiliac joint, or SI joint. This joint is where the sacrum, just above the tailbone, and the iliac bones, those on either side of the buttocks, meet. The disease causes pain and inflammation but may also cause this same effect in other parts of the body as well.
Chronic inflammation in these areas, vertebrae and SI joint, will cause pain and stiffness in and around the spine. Over time a chronic inflammation can lead to the vertebral bodys fusing together which a process called ankylosis. This leads to the loss of mobility at the joints affected.
However, this disease is also a systemic disease – meaning it can affect other tissue around the body. Inflammation and injury can occur in other organs as well, such as the eyes, heart, lungs and kidneys. This particular disease shares many features with other arthritic conditions, such as psoriatic arthritis, ulcerative colitis and reactive arthritis. Because of their similarities the conditions are sometimes collectively referred to as spondyloarthropathies.
Unfortunately, ankylosing spondylitis is a chronic condition and while treatments can decrease pain and lessons symptoms there is no current cure. With early diagnosis and treatment many individuals can prevent complications and physical deformities which are common with ankylosing spondylitis.
Ankylosing spondylitis is two to three times more common in men than it is in women. When men are affected they are more likely to have the joints of the vertebral column fused and women are more frequently affected in the joints away from the spine. Ankylosing spondylitis can also affect children although the most common onset of symptoms is in the 20s and 30s.
Individuals who suffer from ankylosing spondylitis will complain of chronic pain in the lower back and hips especially in the morning or after periods of inactivity. Early symptoms can also includes stiffness in the lower back or hit area. As the disease progresses symptoms will get worse, improve or completely stop. Individuals also complain of pain or tendons and ligaments attach to bones, joints between the ribs and spine, joints in the hips, shoulders and knees as well as pain in the eyes.
In the advanced stages of disease people will experience restricted expansion of the chest wall as the joints between the ribs in the spine are affected, chronic stooping, increase fatigue, weight loss, loss of appetite, bowel inflammation and eye inflammation.
At any time that you have pain in the joints or your back that is unexplained by previous trauma or athletic activity it is important to see your primary care physician. Only they can help to accurately diagnose this condition and start proper treatment protocols that can reduce inflammation, swelling and progression of the disease.
Many researchers believe that ankylosing spondylitis has a genetic component. They have found that 90% of those who present with the disease are born with the HLA-B27 gene. Blood tests have been developed that can detect this marker which helps researchers to further understand the relationship between the gene and the disease.
However, this gene only appears to increase the tendency to develop the disease because other additional factors are necessary for the gene to be expressed or the disease to appear. Researchers have found that 7% of the total population in the United States carry the HLA-B27 gene and only 1% of the population has a diagnosis of ankylosing spondylitis. On the other hand, only 1.8% of the population in Lapland (a northern Scandinavian country) has the condition while 24% carries the gene.
At this time researchers have found only three specific risk factors for the development of ankylosing spondylitis. These are sex (more males than females have the disease), age (between the ages of 20 and 40) and heredity (those who carry the gene may be more susceptible to developing the disease).
This particular condition does not follow a specific course of events but rather will vary widely between people. However, common complications include difficulty walking or standing, difficulty breathing, inflammation in the eyes, inflammatory bowel disease, anemia and heart problems. Difficulty walking or standing is a result of the joint fusion in the back and SI joints. Because the inflammation can cause the bones in the rib cage diffuse it results in breathing problems.
Complications with inflammation in the eyes occurs in up to 40% of the individuals who suffer from this disease. It results in rapid onset of eye pain, sensitivity to light and blurred vision. Individuals who noticed the symptoms should seek the care of their physician immediately in order to decrease the risk of any long-term effects to the eyes.
If the inflammation reaches the heart muscle valve problems can develop resulting in regurgitation and distortion of the essential structures in the heart. Rare complications include scarring of the heart’s electrical system which causes an abnormal slow heart rate requiring the insertion of a pacemaker.
As the disease advances individuals can experience deposits of a protein in the kidneys which results in kidney failure. Progressive kidney disease will lead to chronic fatigue and nausea requiring consistent kidney dialysis to eliminate the accumulated waste products in the blood. People who have ankylosing spondylitis are not candidates for kidney transplants.
Diagnosis is based on evaluation of symptoms, imaging results and blood tests. The physician will do a thorough medical history, physical examination, order x-rays to determine any abnormalities of the spine and a blood test looking for the genetic marker. Sedimentation rate (another blood test) is a non-specific blood test looking for evidence of inflammation in the body.
Treatment modalities used medications to reduce inflammation and to stop the progression of the disease while physical therapy and exercise will help to support the motion of the joints. Individuals who suffer from symptoms outside of the spine and SI joint may not respond to nonsteroidal anti-inflammatory treatments alone and may require medications that suppress the body’s immune system, such as sulfasalazine. Another alternative is methotrexate which can be injected or taken orally.
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Good article, Dee! My husband has ankylosing spondylitis. His spine is almost completely fused, and he’s in chronic pain much of the time. He does have full disability from the VA. I work from home so I can be there when he needs help. I’m a NR affiliate, and that’s where most of my income is from! :D
This is a devastating disease that you don’t hear very much about. I knew about the eye problems, and the skin rashes, but I didn’t know about the ulcerative colitis. He has abdominal pain that is undiagnosed (they want to do some kind of test that involves a liquid diet and fasting for two days. Can’t seem to get his VA doctor to understand that fasting is a problem for a diabetic). I”ll have to look into the UC some more.
Thanks!
Hi Darlene :) It’s great to see you here! How’d you find us? lol
Having that must be horrid to live with – have you tried any natural therapies with any success?
Many blessings,
Dee