It was the spring of 1986. After my second year of college I was still far from obtaining my degree in humanities having spent more time spinning records for the student radio station than attending classes.
As depressing as the grades were, it was now time to look for summer employment. Through a friend of a friend I applied as a bicycle messenger for a local courier company. They wanted me to start the same day! This was my all time dream job, actually getting paid to do what I loved best in the world; cycling.
Since the age of 13 it was my passion. Not the mountain bike stuff but rather the road racing « Tour de France » variety. I pedaled everywhere and then spent weekends traveling to the Laurentian mountain range about 40 miles north of Montreal. Logging 200 miles a week was the norm. Now I was being paid what I considered huge money for pedaling my bike : what a concept!
Having money to burn that summer I bought my first motorcycle; my good pal had one and introduced me to the that amazing feeling of freedom.
By late August things started to unravel. I would be relaxing in front of the TV at home and when I got up to stand the most amazing and weird pain started deep in my buttocks and raced down the back of my leg. Oddly enough I could simply walk it off in a few minutes. I soon found out that this was called sciatica but didn't consult a doctor for it since it never hurt when I was on my bike working. As the weeks progressed however, I could still pedal but could no longer walk... even short distances.
The family doctor sent me to regular physiotherapy. This twice weekly treatment went on all of September and October but with no results whatsoever. It was unfortunate because I had just recently moved out of my parent's place to my first apartment after having told my parents I was not going to pursue my studies but work full time instead. Now I was faced with having to tell the courier service I had to quit : it seemed obvious to me that although I felt no pain while working, it was certainly the excessive bicycling that was causing the sciatica.
Having rent to pay and no job prospects was compounding my slight depression caused by the constant sciatica pain. Things were fine in the end since the courier company immediately offered me a clerical position. Nine to five data entry on a buggy computer.
As readers may have guessed, my physical condition did not improve. I started waking up in the middle of the night with horrendously aching back muscles. I could no longer sleep on my stomach (my favorite position!) and had resorted to sleeping in a reclined position supported by huge stacks of pillows.
I started bouncing from one treatment to another : various chiropractors; osteopaths; acupuncturists, etc... All the while sleeping was getting more difficult. In short order I was sleeping no more than 2 and a half hours straight before being woken by the searing pain. I then had to sit in a hard, straight-back chair for about an hour and then return to sleep. A hot shower for fifteen minutes could sometimes do the trick as well. (Watched WAY too much late night television during this period!)
And so it went for 3 years. Sleep patterns were adjusted to accommodate the pain. I became an expert in propping up my body with pillows in order to sleep on my side. I learned how to limp in such a way that walking with the sciatica was bearable. Carrying a tennis ball with me at all times so I could sit on it (placed directly on the area of the sciatic nerve it is quite uncomfortable but getting up and walking after a long sit is then much less painful). Breathing became awfully difficult because of the painful back muscles. Running, even for just a dozen paces, was out of the question.
I didn't battle depression probably because of my very large entourage of close friends : we had a blast together all the time. We were young, independent, living in a great city and just having fun. I did however learn to shut up about my pain : I realized one day that my complaining was getting on everybody's nerves. Understandably. I learned how to clench my teeth and not complain out loud.
My mother, being a mother, was worried as heck when she saw me limping around. She believed in alternative medicine but knew I did not. I humored her and had tried the acupuncture in the past but in early 1990 she wanted me to give it another try. She found a rare oddity in the local medical community : an M.D. who also graduated at the Palmer college of Chiropractic medicine and studied acupuncture in India. He was not taking any new patients but my mother, through some connections, got me in.
First visit : x-rays and 30 minute talk. Next few visits : acupuncture but no chiropractic manipulations. He also suggests I make certain minor changes to my diet and monitor my pain. He also suggest natural extracts. I can't remember what they were something like gold extract, shark cartilage, algae extract but they all tasted like s**t.
At this point my hands could not reach lower than my knees when I bent over and it took me a good two hours of morning activity before I was fully mobile. After about 4 months of regular visits, and no tangible results, the doctor looked increasingly puzzled. He eventually asks « Have you ever had a blood test? ». He prescribed a round of blood tests without being too clear on what he is looking for. On the next visit he deadpans : « I think you have arthritis ». He said to find a rheumy and sent me off with a prescription for 75mg diclofenac.
I walk (limped) home in a daze. My aunt has a debilitating case of psoriatic RA : did this stuff run in the family I wondered?
My mother again pulled strings, this time to get me an appointment with the most renowned rheumatologist in Montreal (I wish I could name names!). In the mean time I was just ecstatic!!! The diclofenac Rx gave me 11 hours of continuous sleep!!! I had not slept a full night in over three years. God it felt great! I had diarrhea full time since starting the Rx but the pain quickly melted away.
That Rheumy was obnoxious. He reviewed the x-rays (showing fused SI joints) and blood tests (showing HLA-B27) and declared : "A classic case of Ankylosing Spondylitis. It is a degenerative form of arthritis; your spine will gradually fuse together and you'll eventually be in a wheelchair". He wrote out a new Rx (for the 100mg SR version of diclofenac) and sent me on my way saying he did not want to see more than every two years since it was a typical case and nothing more could be done. Oh yes, he also gave me to photocopies of stretching exercises I should do each day. I think he was kinda bored with my "classic" case.
My reaction was total disbelief. Not that I could have such a terrible sounding disease but that the prognosis could be as he described. Back home I logged on and searched the internet to find out more. What I found first and foremost that day was that I was not alone. Others had gone through the exact same thing: the same pain, the same lag time in getting a diagnosis. The doctor was pretty useless in treating my disease where it counts: between my ears. The information, the knowledge about AS is what gives me, the patient, the will to move on and manage the pain associated with the AS. My first rheumy probably thought knowledge was his exclusive domain.
Since that day, I've stayed on the same medication (with the later addition of Cytotec to guard my stomach from the diclofenac) and learned to manage the disease. Curtailing certain activities (contact sports, running, cycling), regular massage therapy (shiatsu), stretching and breathing exercises are my only other lifestyle changes.
All told, I had AS related pain in my spine, upper & lower back muscles, sternum, hips, sciatic, right heel, jaw and regular bouts of bursitis in my right shoulder.
My scariest experiences:
I have great faith in the no starch diet because I firmly believe AS is an immune system problem (I'm HLA-B27 positive). I'm convinced we'll find a genetic cure. I'm certain that AS is an immune system response gone bad: when I have a bad case of the flu, my immune system kicks into overdrive sending a fever up to 104 degrees F to attack the virus all the while giving me a break from the AS pain. My immune system is so busy with the virus that I don't have to take my meds! A good bout of the flu is always a break from my AS pain. Such are the mysteries of the human body....