John's Story

While in college in my early twenties (c 1992), I began having some mild back pain. (I say mild because I now know what real back pain is.) I thought it was just stiffness resulting from being relatively inactive for a few years after having been very active in high school sports. The stiffness was sporadic and didn't alarm me in the least, as it didn't prevent me from doing any of the things I was accustomedto. I participated in intramural football and softball and played tennis on a fairly regular basis.

In the fall of 1995 (age 25), having married my high school sweetheart a few months earlier, I experienced the first real lower back pain. The pain was enough to send me to a local specialist. Certain that something was mechanically wrong with my spine, I was devastated when the X-rays showed nothing. The doctor gave me an anti-inflammatory (Relafen I think), said nothing was wrong and that I must be out of shape and sent me on my way. When the pain was gone a week or so later, I believed his diagnosis.

A month or two later, I began waking up in the middle of the night in a great deal of pain. This time it was in the upper back between the shoulder blades. It felt like my back was completely locked and there was a distinct burning sensation that lasted several minutes. I would rise up with a fairly loud groan, roll out of bed carefully and lie on the floor until the pain subsided. These episodes went on for a few weeks until I found another specialist. I went to a sports clinic this time expecting the best advice available. Again the X-rays showed nothing. The doctor placed heated towels on my back and let me relax for a few minutes before giving me the news. Basically nothing was wrong, I was out of shape and needed to do more stretching exercises. She prescribed an anti-inflammatory (Napersyn, or Naproxen) and sent me on my way. Once again the episodes ceased after a couple of weeks and I believed her diagnosis.

Over the next year or two, I started having pain in other areas. The first area to be affected (and probably the worst) was the coccyx at the base of the spine. For about 2 weeks I could barely move an inch at a time without freezing in terrible pain. That of course made my drive to work (~1 hour each way) particularly interesting. I can only imagine what other commuters must have thought seeing my grimacing, half-hysterical contorted face with outstretched arms on the wheel driving down the interstate as the pain hit. This time I didn't seek medical attention and the pain was gone after a couple of weeks. Maybe amonth later one of my hips began bothering me. I was playing on the company softball team at the time and thought it must have been related. Surely I had just landed in an awkward fashion and just tweaked it a bit. The pain lasted only a week or so, but strangely enough seemed to shift to the other hip. I had no explanation this time except that I must really be out of shape now and perhaps this is normal.

In the summer of 1997 I noticed something really strange. I went to sleep one night face down with my arms wrapped around a pillow. When I awoke the next morning my sternum was extremely sore. I felt stupid for falling asleep in that position, vowed not to do it again and went on about my business. I had noticed in passing over the previous years that occasionally my sternum would "pop" just as a finger, knee or any other joint does. I remembered several hits to my rib cage area while playing football back in high school and was certain those were responsible. The soreness didn't go away this time. As a matter of fact it lasted for several months. For that time I found I had real difficulty coughing, breathing heavily or bearing any load on the rib cage. Sneezing was so painful an experience that it quickly ceased
to be an option.

The back pain that had been tolerable for so long resurfaced with a vengeance in mid to late 1998. This time I found myself under the care of a Chiropractor. After the X-rays again came back with no visible problems, he began a month-long twice-a-week program full of massage, electronic muscle stimulation followed by spinal manipulation. I enjoyed the muscle stimulation and massage and I thought the backcracking was actually working. Of course the pain would actually be worse at night and the following day. With no real improvement at the end of the month, he said I was out of shape and needed to improve my flexibility. Again the pain went away after a few weeks and I believed him.

I changed jobs early in 1999 and was hoping to put all of those problems behind me. One day in mid spring I stepped outside to go to lunch. When I emerged from a dark room to the bright sunlight, I immediately felt a sharp pain in my right eye. I thought it must have been from the short time my eyes had to adjust to the change in light. There was a group of us though, and I was the only one with a problem. Feeling sheepish, I said nothing more of the incident. The feeling didn't go away during lunch or the rest of the day. My eye became very red and irritated. People in the office were worried that I had Pink Eye, which happened to be in season at the time. Worried along with them, I went to the doctor the following day. Upon inspection the doctor (actually a Physician's Asst.) arrived at the same conclusion, although I had repeatedly stated that the eye was extremely light sensitive, wasn't itchy and had no sort of discharge that might be associated with Pink Eye. I was given some eye drops and sent on my way. Two days later I was really uncomfortable and doubted these drops were doing anything at all. I called the doctor's office explaining there had been no improvement whatsoever. The nurse said these exact words "just give them time to work." I went out of town to visit friends that following weekend drops in hand. By Sunday afternoon I couldn't bear to keep the eye open without covering it with my hand. I was fortunate to have my loving wife along to drive me home. I made a return visit to the doctor Monday morning. My wonderful wife, fit to be tied at this point, demanded that I be referred to an Opthamalogist.

The Opthamologist immediately diagnosed Iritis, measured the intraoccular (sp?) pressure to be 13 mm Hg (I believe normal readings would have been below 10 mm Hg), and prescribed Prednasone drops at a rate of one per hour. Unfortunately the drops didn't seem to work, and by Thursday I was no longer able to function at work. The pain had become almost unbearable and I was back at the Opthamologist Friday morning. By now the pressure beneath the cornea had reached 50 mm Hg and more drastic measures were necessary. Before I knew it, I was receiving a local anesthetic followed by 2 steroid injections beside the iris and into the sclera. Thanks to having blurry vision in that eye, and being somewhat distracted by the pain of inflammation, I couldn't really see the needles coming at me.
Otherwise, I am not sure I could have gone through with it. About 20 minutes or so later the Iritis pain was gone. A rather frightening side effect came later that afternoon. I left the office with an ice pack on my eye and had kept it there for the entire ride home. My wife left for a couple of hours and upon returning home, asked me to remove the pack so she could see the eye. Her eyes widened and her chin dropped as she asked me to look into the mirror. My eye had hemorrhaged and the entire white part of the eye had become solid black. It was the strangest thing either of us had ever seen. After a day or so, the blackness turned a tomato red and stayed that way for a couple of weeks. Finally after a month or so, the redness had thinned out to a barely visible yellow tint and the light sensitivity (and associated blurry vision) was almost gone.

During the bout with Iritis I asked the Opthamologist what could be the cause but he wasn't sure because there were so many possibilities. Having never even heard of Iritis before, I consulted the Internet.
Somewhere in the midst of all the medical sites and technical jargon I came across a personal story. I couldn't believe my eyes. Not only did the guy have Iritis, but he also suffered from back pain and stiffness, hip problems, rib cage soreness, lack of flexibility and so forth. It was if I was reading my own history of symptoms. He had something called Ankylosing Spondylitis. I read that it could be hereditary. I remembered that my father had some back trouble over the years so I called my mother to get some information, as he had passed away a few years earlier. I learned he had something called Psoriatic Arthritis. He had distinctly pitted nails, a slump in posture, (not too bad, but noticeable), noticeable back stiffness (2-3 vertebrae were actually fused), a few bouts of Iritis, occasional pains in the shoulders and heels and some digestive problems. Upon more reading, I found that Psoriatic Arthritis, Ankylosing Spondylitis and Reiter's Syndrome (a.k.a. Reactive Arthritis) were all related in a family of Spondyloarthropathies. (Sometime during information gathering, I found this great site and I have been coming here off and on since). Armed with information, I figured the diagnosis would be as clear to a doctor as it was to me. I made an appointment with my G.P. and asked to be tested. He ran a few blood tests and the results came back negative (I found out later that he had only screened for Rheumatoid Factor and neglected to test for the HLA-B27 antigen). With a negative blood test result to go along with all of the negative X-rays, I felt more like a hypochondriac than ever before. I went on about my dailyroutine and tried to forget about it.

In the late summer of 2000, I contacted a friend of mine who had recently been diagnosed with A.S. and he recommended his Rheumatologist. I made an appointment for a couple of weeks later. After going over the list of symptoms, he ran a few tests (blood tests, mobility measurements and X-rays). The X-rays came back negative, but this time the HLA-B27 test came back positive. Finally I had a positive indicator of what had been causing all of those problems over the years. I was able to see him only a few times before I changed jobs (and states this time) again. I was diagnosed with Spondyloarthropathy but it was uncertain whether it was AS, Reiter's Syndrome or Psoriatic Arthritis. The Rheumatologist did say that he expected that one day they might all be considered the same disease.

More than a year later, I am now in the process of finding a Rheumy here in TN.

John_in_TN