Ankylosing spondylitis is a very variable disease. The typical course described in this pamphlet does not occur in every patient and for this reason a few case histories are presented below. These were suggested by a group of patients with ankylosing spondylitis who were asked to comment on the text of the pamphlet.
At the age of eleven the patient developed a swollen right knee which did not respond to aspirin treatment. He was seen at his local hospital and the leg was put into a plaster of Paris splint for six weeks. The knee was very stiff after this but the swelling had settled. After three months of physiotherapy the knee had returned to normal. A similar episode occurred when he was fourteen years old and the knee settled, as on the first occasion. At the age of twenty-one he began to get pain in the buttocks and the top of his legs, which was thought to be lumbago. He found that aspirins had no effect on the pain, which would wake him at night. He was so stiff in the mornings that he had to wake himself an hour earlier to loosen up so that he could get to work on time. He decided to see an osteopath, who manipulated his spine on three occasions. The pain seemed to be worse after the manipulations, for two or three days, so he stopped going. At the age of twenty-four he was referred to the hospital, where a diagnosis of ankylosing spondylitis was made. At the time of his referral he had been getting bouts of low back pain, waking him at night, for about four months. He was demoralised and had changed his job from working in a warehouse, doing heavy lifting, to a clerical one. The change had not helped his back. He responded well to appropriate drug treatment and physiotherapy. The nature of his disease was explained to him and he felt much less depressed about it.
This man's disease began in childhood, but it was not possible to make a diagnosis at that stage. Osteopathic manipulation made his symptoms worse, whereas controlled exercise, as instructed in the physiotherapy department, maintained his mobility and reduced his pain.
The patient first noticed low back pain while he was in the Army at the age of twenty-one. He would wake with severe pain and stiffness at 5 am. His disease was not recognised at that time and it was felt that he was trying to get out of his National Service. While on leave his parents took him to see an orthopaedic surgeon, who found that he had an elevated ESR. The diagnosis of ankylosing spondylitis was suspected at the time, although his X-rays did not show any abnormality. He was discharged from the Army and got a job as a salesman. The back pain persisted, although painkillers did dull the discomfort. He never seemed to get periods of relief from the pain. Gradually the pain caused him to adopt a stooped posture, which has never improved in spite of exercises. He did find that when phenylbutazone first became available the pain was much easier to tolerate and his stoop never progressed after that time.
This patient is unusual, in that his ankylosing spondylitis has not gone into periods of remission. This is known to occur (i.e. persistent disease) in a few patients. His back deformity was, however, halted once he was given an effective drug.
The patient developed ankylosing spondylitis at the age of nineteen, but after three years she was free of symptoms. At the age of thirty-one she was "shaken up" in a car accident. No bones were broken, but she was bruised around the face, chest and thighs. Two days after the accident she developed acute pain in the dorsal spine, which was worse on breathing. She had to be given large doses of pain-killing drugs to settle the pain. The ankylosing spondylitis became reactivated in the dorsal spine and took four months to settle. Her chest expansion, which had previously been normal, was reduced to less than half.
The patient was knocked over by a passing car while she was crossing the road. In the casualty department of the local hospital she was found to have fractured her lumbar spine, which was rigid from ankylosing spondylitis. She denies having any back pain during her life.
This is exceptionally rare but does illustrate the fact that X-rays may look impressive, but the symptoms don't always match them. The reverse is also true. Namely, a great deal of pain may not be accompanied by any X-ray features. It has been suggested that it is more common for ankylosing spondylitis to run a less painful course in women than in men. It has also been shown that men get their ankylosing spondylitis diagnosed earlier than women on the whole.
Patient education is an important part in the management of the condition. Start now, send NASS yourmembership form and we shall quickly respond by sending your membership card and the current edition of the twice yearly Newsletter. We know that many young people go into a denial or mourning stage on diagnosis. We hope that this booklet has taught you that such an attitude is unhelpful. We appeal to you to take an intelligent interest in your condition. It's not your fault, or anybody else's fault, that we all share this condition, so let us help you to help yourselves.