My AS Story
by Tom Jump
I have had Ankylosing spondylitis symptoms since I was 25. It started in October of 1979 when on the last segment of a cross-country auto trip, I began to experience severe lower back and sciatic pain. Traveling from Denver to San Fran to LA and back, my wife and I tent-camped and slept on friends’ floors along the route. On the final leg from Las Vegas to Denver, an awful, extreme pain started in my sacrum/sacroiliac and right buttock and zapped me down through my right leg. It marked the start of my AS symptoms and began an 11-year odyssey of appointments and examinations by physicians, orthopedic specialists, chiropractors, physical therapists and finally in 1990, a rheumatologist with the confirmation that I indeed had AS.
In those early days I had no idea that my AS was just beginning. Throughout my life before then I had been healthy and athletic but always had tight ligaments- touching my toes was never possible. Six months before the symptoms started, I badly sprained an ankle and at that time I was unaware that AS activation was thought to be triggered by such injuries. Neither did the medical personnel that I saw in the ensuing months as the disease fixated on my lower back and sacroiliac, and the sciatica moved to both legs.
By early 1980 I started seeing medical people who didn’t have a clue about AS. In those days my job involved drawing architectural and landscape plans while sitting at a drafting board. At least one doctor thought that was creating the back issues. I was prescribed the anti-inflammatory butazolidin alka which was great but could only be taken for short periods of time. The first chiropractor I saw told me if I crawled on the floor, my spine would realign itself. When I tried this, it did nothing to improve my condition but sure threatened our dog! The pain would often wake me up at 4 a.m. and I would sit on the front porch so I didn’t wake up my wife. I was stiff as a board and couldn’t enjoy many of the activities that I used to.
An orthopedist told me that I needed to get in better physical shape or they were going to have to consider back surgery because he thought it was a disc problem. His recommendation was to start swimming and although I had never swum a lap in my life, I decided to try swimming after work. I started with only a few laps a couple times a week but since it seemed to help, I eventually became a decent swimmer. I lost 15-20 pounds and over a couple years in the pool worked up to alternating half-miles and miles every other day.
I also found another chiropractor who was helpful with back alignment and with his direction and some research of my own, I developed a twice-daily stretching plan which I did religiously. This stretching was usually done on a pad in front of the TV in the morning and before bed and that helped to manage some of the pain and stiffness. I also started riding a bicycle which also loosened the sacrum and strengthened lower back muscles.
Eventually the exercise and stretching improved my pain and mental condition from awful to fair. I took OTC meds but still had plenty of pain and stiffness in my low and middle back. The sciatica would return occasionally, but overall I was managing the unknown affliction the best I could. I stayed away from heavy lifting and limited impact exercises like running. I could no longer play golf the way I once did, but for 8 or so years the AS became tolerable. During some of that time I was so obsessed with exercise that I did 10k’s and triathlons, all the while managing the disease daily.
As the 80’s wound down, I was then over 30 and in addition to the daily back pain, I started having more and more stiffness in my neck, shoulders and sternum which made it very painful to ride a bike and swim. At that time I had also started a family and my career became more intensive so I did not have the “self time” to spend on managing my disease through exercise like I once did. Of course it had never been diagnosed but that was about to change.
In 1990 I had a flare-up that was very severe in my neck and left shoulder so the chiropractor referred me to another orthopedic doctor. This guy was totally insensitive and said he couldn’t do anything to help. Panicked, I asked if he could prescribe some physical therapy which thankfully he did and this became the turning point in finding a diagnosis. I went to a physical therapist who was very good and after a month she was concerned that my back, shoulders and neck were still incredibly inflexible. She asked me if I had ever been tested for AS and of course I had never heard of it. She referred me to a rheumatologist who prescribed the blood test to ID the gene and finally at age 37 all this pain had a cause and name!
I was put on daily anti-inflammatories for the first time and felt decent but I was still stiff and had that dull, continuous ache in my back and neck. AS proved to be relentless and in 1994, I experienced iritis for the first time- first in one eye and later in the other. That ended my contact lens-wearing days which resulted in me being even less active than I had recently become.
Iritis is truly awful and the flare ups continue in just the right eye infrequently to this day. My vision has become poor- the left eye can’t be corrected better than 20/70, the right eye has had a detached retina repaired and there is a blind spot in the lower right quadrant. Plus my ophthalmologist says the steroid drops used to treat the iritis are causing cataracts but he wants to put off the surgery as long as possible because it will make the iritis worse!
As I said before, AS is relentless. I know some my symptoms are less severe than those that many others have and for that I am both thankful and sympathetic. However my back and neck are always stiff, my posture gets worse as the years roll on, I have lost almost 2 inches in height and the iritis returns on occasion. I stretch on an exercise ball when I get out of bed every morning and I try walking for at least 30 minutes every other day just to maintain.
I am so glad there are people like Cookie and the support organizations and communities for us and I am really pleased to see that the clinical research into AS is progressing. We have come a long way in the 30+ years that I have been afflicted and that gives me great hope for the next 10 or 20 years! Hopefully my children will not develop symptoms which so far (knock-on-wood) they haven’t.
The “Faces of AS” is so great and I really appreciate reading the stories of all the other AS folks. There are so many courageous people with this disease!
God bless all with AS and those who are supporting them!
Colorado, United States of America