Confronting the bad back monster of almighty suffering is no easy task as it makes its presence felt in the lives of its victims long before they are diagnosed with it. More often than not, this is years before they find out that the beast’s proper name is ankylosing spondylitis (AS).
It sounds sinister, and for those who wander in the darkness of ignorance it is. “It” is an inflammatory disease that can cause some of the vertebrae in the spine to fuse together, making the spine less flexible and resulting in a hunched-forward posture. If the victim’s ribs are affected by it, they may find it difficult to breathe deeply.
Ankylosing spondylitis is found in a group of related diseases known as spondyloarthropathies. In the United States, spondyloarthropathies affect 3.5 to 13 per 1,000 people. Most likely caused by genetic and environmental factors, AS can occur in more than one person in a family but is not a purely genetic disease.
Early symptoms of AS are caused by inflammation in the joints between the bones of the pelvis, called the ilia, and the base of the spine, or sacrum. Known as sacroiliac joints, inflammation of them is called sacroiliitis. The inflammation gets into the joints between the vertebrae, causing spondylitis.
The bad back monster of almighty suffering can bite at other joints as well, including the shoulders, hips and knees. Those victims who are at an advanced stage of the disease are also more likely to experience fractures of the vertebrae.
In about 40 percent of cases, acute iritis, or eye inflammation, results from AS. The condition causes eye pain and light sensitivity. Rarely, ankylosing spondylitis can cause problems with the heart, lungs, and nervous system. Men are most affected by the disease, whose signs and symptoms typically begin in early adulthood.
Inflammation can occur in other parts of the body, but most commonly in the eyes. As of now, AS has no known cure, though various and often very expensive medications, careful diet, exercise and unbending willpower can help ease the pain and lessen its symptoms. As painful as almighty suffering is to the victim, however, it is often the emotional pain caused by family and friends who do not, or will not, understand the affliction that can be the worst pain of all.
Because it gradually sneaks up on the patient, parents sometimes simply assume their child is going through “growing pains” or displaying a negative or defeatist attitude, and become dismissive when the child complains of a bad back. Bosses or teachers may think a lackluster employee or student is just being lazy. This can result in psychological scarring. Many are almost relieved to find out that they are actually suffering from a dread disease and not “making it up” or exaggerating the aches and pains of adolescence.
Sufferers worldwide have a Facebook group to turn to, where they can share their experiences with others. Typical of many in this group, one contributor, Tim, had unanswered questions about his condition and asked whether AS progresses even when there is no pain and inflammation. He had heard that the inflammation causes the damage because an AS sufferer’s body produces bone when fighting it and reasoned that if a sufferer was pain and inflammation free no damage would be caused.
Robert, a friend on the AS page, replied that he was diagnosed at around 20 years old but was now 54. He said he was told what to expect from AS but within a couple of years he basically forgot about the diagnosis. Shortly after his 51st birthday he started having serious problems with his hearing. After many doctors’ visits and an Ear, Nose and Throat specialist, he was finally sent to a rheumatologist, who confirmed that he had AS and that his lower spine had fused. The fusion had taken place so gradually he had not even noticed.
Robert said the ENT diagnosed his hearing loss as Inner Ear Autoimmune Disease attributed to AS. After this, his rheumatologist put him on prednisone and methotrexate, the first prescribed medications he had been on since he was a teenager. Before his AS diagnosis at 20, Robert was diagnosed with Juvenile Rheumatoid Arthritis of his right knee and said he lived on aspirin for about 12 years as a child. The methotrexate gave him liver trouble so he is now on a low dose of prednisone. When he has a “flare” he goes completely deaf, something he finds “terribly scary.”
Tim and Robert are typical of the many who join the AS group. While some try to put a positive spin on how they are feeling, others find it cathartic to vent their emotions and soak up the feedback from fellow sufferers. As with many other previously obscure illnesses that have come to light thanks to the internet and social media, it would seem that the more ankylosing spondylitis sufferers make their cause known, the sooner the medical giants will go all out to find better solutions for the bad back monster of almighty suffering.
By Keith Allen