Sunday October 26, 2008
Fused spines and such
Learn about ankylosing spondylitis, a form of arthritis of the spine that can lead to fusing of the spine and other joints.
MOST people would have experienced back pain at least once in their lifetime. It usually comes and goes, especially when one is emotionally stressed, physically exhausted, or has some form of injury such as a slipped disc, muscle pull or trauma.
Back pain is seldom associated with arthritis, a condition affecting the joints. But that was how 48-year-old Tan described his experience in 1987 when he first started having lower back pain that lasted for three to four days.
Consultant physician and rheumatologist Dr Wahinuddin Sulaiman ... Getting the right diagnosis fast enough is often a major problem because patients always think they are having a normal backache. Then a young trainee teacher in his early 20s, he was always told that his back pain was caused by poor posture, a muscle pull or the wrong sleeping position. The doctors always told him the same thing €“ “Take some painkillers, go home and rest.”
The pain got worse over the years. After a while, he started to feel stiffness setting in at his lower back. It spread progressively up his spine until his entire back felt stiff and painful. After three years, he was so stiff he could not move his upper torso around.
He coped by slowing down €“ writing, walking and moving at a speed uncommon for someone his age. When he reached 30, he could barely perform any kind of stretching and had difficulties at work.
“My back and body were so stiff that I could not lift my arms to write on the blackboard in class. The long standing periods made it worse; I would feel my back aching badly at the end of the working day,” he recalls.
At his next visit, he told his doctor that his neck was so stiff he couldn’t turn his neck to see oncoming traffic when he drove. Only at that point, he was referred to an orthopedic surgeon who conducted an x-ray on him immediately. It was then that he was diagnosed with ankylosing spondylitis (AS).
“My first reaction was alarm, because it was such a strange-sounding condition. Then I wondered if it’s anything worse than cancer. My doctor explained to me that it’s a form of arthritis and advised me on how to manage it better,” says Tan.
Today, Tan still remains relatively mobile although he walks with a little stoop. “I now have what they call the ‘bamboo spine’, where the bones at my back have fused together at some parts, making my joints immobile. But I still feel lucky that it had not been cancer, or I would not be here today to share my story,” he adds.
According to consultant physician and rheumatologist Dr Wahinuddin Sulaiman, Tan is lucky to have received treatment relatively early because delays in diagnosis would have resulted in further complications.
“Getting the right diagnosis fast enough is often a major problem, because patients always think they are having a normal backache. Late diagnosis may result in inflammation, which spreads up from the spine and cause the bones in the rib cage to fuse, resulting in breathing difficulties,” he cautions. In severe cases, the heart and eyes may also be affected.
What is ankylosing spondylitis?
Ankylosing is derived from the Greek word meaning “fusing together”, whereas spondylitis means “inflammation of the vertebrae”.
Basically, ankylosing spondylitis refers to the condition when some or all of the bones at the spine fuse or join together.
“No one knows why this happens, but it is believed to involve genetic factors. Scientific research shows that people who have an abnormal gene called HLA-B27 are at higher risk of getting spondylitis. But not everyone with this gene gets spondylitis; only 25% will develop the condition,” says Dr Wahinuddin.
He also stresses that ankylosing spondylitis is not caused by poor postures, sleeping on mattresses that are too soft or too hard or carrying heavy loads that strain the back.
Ankylosing spondylitis is three times more common in men, although women and children are also affected sometimes. The disease also progresses differently in men, women and children.
Dr Wahinuddin explains: “In men, the pelvis and the spine are most commonly affected. Other joints which may be implicated are the chest wall, hips, shoulders and feet.
“In women, the spine is less affected, with more involvement at the pelvis, hips, wrists and ankles. Adolescents with ankylosing spondylitis tend to complain of pain at the knees, ankles, feet, hips and buttocks. It rarely occurs in children.”
Onset of the disease usually begins between the ages of 13 and 35. In the past, people above 40 were thought to be excluded from getting ankylosing spondylitis but it appears to be increasingly prevalent among the older age group nowadays, notes Dr Wahinuddin.
What actually happens is there is inflammation outside the little joint between the spine where the ligaments and tendons are attached to the bone. In an attempt to heal the body, the spinal bones create new bone matter over the existing bones, causing them to become stiff and inflexible. This then stiffens the rib cage, affecting lung and heart function.
“This is why people with spondylitis are strongly advised to avoid or stop smoking because having impaired lungs further reduces the ability of the lungs to expand fully,” explains Dr Wahinuddin.
Treatment and management
As with other forms of arthritis, ankylosing spondylitis is not curable. However, patients can still have a good quality of life if they are armed with sufficient knowledge to battle their condition.
The main aims of treatment is to relieve pain and stiffness and prevent or delay complications or spinal deformity such as the stoop. Dr Wahinuddin stresses, “The earlier the treatment, the more successful the outcome because it would stop the spinal fusion.”
Pain relief is key to good management because pain leads to chronic fatigue and depression, which depletes the patient’s fighting instincts. The most commonly used medications for ankylosing spondylitis are non-steroidal anti-inflammatory drugs (NSAIDs), which help provide relief from pain and stiffness. On top of that, disease modifying anti-rheumatic drugs (DMARDs) are also added help prevent joint stiffness and pain.
In recent years, tumour necrosis factor (TNF) blockers, also known as biologics, have been shown to be effective in reducing the pain, stiffness and tenderness in swollen joints.
The good news is, all these treatments, including biologics for ankylosing spondylitis, are widely available in both private and government hospitals. This gives better opportunity to patients to seek proper treatment for their lifelong condition.
Equally crucial is physical therapy, which improves physical strength and flexibility. Dr Wahinuddin recommends daily stretching and range-of-motion low-impact movements, as well as breathing exercises to sustain and enhance lung capacity. Swimming is also an excellent form of exercise for people with ankylosing spondylitis.
“Patients usually experience early morning stiffness and pain, which will wear off or reduce in intensity throughout the day with increased mobility or exercise. In fact, one of the most distinctive aspects of AS is that the patient will feel better after exercising and worse after rest, especially prolonged rest,” he says.
To prevent the stoop associated with ankylosing spondylitis, proper sleep and walking positions as well as abdominal and back exercises can help patients keep a straight posture.
Having a firm mattress is important because it helps keep the back straight. Big pillows, however, are discouraged because it may cause the neck to fuse in a flexed position. In the same way, propping up the legs on pillows should be avoided to avoid the hip or knee to fuse in the bent position.
Patients with spondylitis must always avoid sudden impact such as jumping or falling because they can easily injure their rigid necks and backs, adds Dr Wahinuddin.
Staying positive
Living with a chronic disease like ankylosing spondylitis can bring out the best or worse in one. When they are newly diagnosed, most patients will go through a period of anger, denial and depression.
The emotional and physical support of family and friends can help patients to pick themselves up and fight on. Some, like Tan, found renewed confidence in themselves despite knowing that they had to forgo many dreams and ambitions.
“When I was younger, I dreamt of partaking in extreme sports such as bungee-jumping, snorkelling and taking roller-coaster rides. With my disease, I know all those will remain dreams,” he says wistfully.
Yet, he has learnt to make the best out of his condition by continuing to teach and going for annual overseas trips with friends. Over the years, he has visited Bali, China, Thailand and has gone hiking up Maxwell Hill with his friends.
“I can’t change the fact that I have this disease, but I can still make the best out of my life. After all, my legs are still working fine and I still have a good head on my shoulders to instil knowledge in children. Being able to contribute to society despite my limitations is already a big achievement to me.
“I’ve developed a high tolerance for pain over the years but I still need to rely on my medications for relief of pain and stiffness. Rather than thinking about side-effects of long term medication use, I’ll rather think of it as giving myself the opportunity to get on with life,” he shares.
Most importantly, one must have a positive outlook. “Having a positive outlook makes patients more responsible towards their own health. With spondylitis, patients need to be committed to daily exercise and medications. Doing so will enable them to enjoy a good quality of life for a longer time,” Dr Wahinuddin concludes.
This public awareness message is brought to you by an educational grant from Wyeth Malaysia.
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