Physical Gains Despite the Pain: A Triathlete with FM Tells His Story
Thursday, July 5, 2007
By: Bill St. John

Patient Story

I have fibromyalgia. It causes me to endure days of unrelenting muscle pain and fatigue. My symptoms occur in unpredictable periodic bouts of 2 to 3 days of generalized pain, which makes even lying down a slow torture.

In spite of my condition, I regularly compete in the most extreme athletic events. Over the last two years (while over 50 years old), I have qualified and competed in the Nissan Xterra World Championships triathlon involving rough water swimming and one of the most difficult mountain bike and trail running courses in endurance sports. I have competed in the Empire State Building Stair Run and a bike race up a 10,000 foot elevation volcano. My training schedule is as punishing as my race schedule.

While it is not uncommon for individuals with fibromyalgia to experience symptom-free periods, I believe it is atypical to see health swings of the magnitude I experience. One day I can feel like superman and the next day I can’t find relief. I am prompted to write about my unique experience with this frustrating disorder in the hope that it will encourage others who are searching for their own ways of coping.

My fibromyalgia started about 30 years ago when I was in my twenties. I was a competitive cyclist. My training consisted of biking in excess of 200 miles per week along with running stadium stairs in the evenings. One evening after running to the top of a flight of stairs, I was overcome with a mysterious bout of muscle soreness and fatigue.  I actually thought I was having a heart attack. Over the next year, the recurrence of similar unexplainable episodes caused me so much confusion and constant worry that I had no choice but to end my cycling career.

During the ensuing years these painful bouts grew more intense and more frequent. On top of the pain, I had to endure repeated misdiagnosis. I was diagnosed with everything from hypertension to arthritis and mixed connective tissue disease. For my family and me this added even greater anxiety to an already stressful situation.

While I was able to maintain a successful family life and business with the help of my wife, the subtle harmful impact on all aspects of our lives was obvious to both of us. Other people thought I was reclusive because I went to great lengths to never let others know. This article could be considered my coming out of the fibromyalgia closet.

The correct diagnosis of fibromyalgia was a real breakthrough for me. It only took 15 years. It ended the anxiety associated with the many misdiagnoses and gave a name and identity to my nemesis.

As a scientist, I studied what little was known about this illness. I quickly realized that my muscles were structurally and anatomically capable, but my body was inaccurately reading and processing biochemical messages from the muscle. My recent athletic accomplishments are testimony to the integrity of my muscles.

The issue was that I felt pain and fatigue at a ridiculously low threshold of activity and stimulation. My bouts were also brought on by barometric changes and sleep interruption. The lack of quality sleep was robbing my muscles of the recuperative benefits of REM sleep. Fortunately, my doctor prescribed mediations which did help me sleep. This was the first positive treatment since the disease started at the top of those stadium stairs 15 years earlier. Armed with basic knowledge of the illness and energized with the benefits of sleep, I began my pursuit of some relief.

Fortunately, my prior athletic experience gave me some insights concerning how our muscles work. I knew how to condition a muscle to experience less pain and fatigue with greater stress. I decided that my approach to fibromyalgia was simply to apply time-honored muscle conditioning techniques used by athletes for decades. This meant progressively applying greater stress to my muscles in a controlled, graded exercise program. This type of conditioning is how all athletes increase the tolerance of the muscle to greater and greater activity. I relied heavily on the guidance of trainers and coaches who worked for over 12 years to get me to a point where I could compete. Good instruction and coaching are mandatory for anyone commencing such a program.

But in the beginning, my goal was not to rekindle my athletic career. Such a thought was unimaginable. I simply had the modest goal to make my bouts less painful. I felt there was a good chance that if my body could tolerate a challenging exercise program, then the frequency and intensity of my pain would be reduced.

It took courage and support from my wife to begin this approach. While I intellectually understood what was supposed to happen, the years of pain had conditioned me to avoid everything that I remotely suspected would make the pain worse. What helped me get started was the realization that I couldn’t fall off the floor; I had nowhere to go but up. And as it turned out, I never felt workouts brought on a bout or made the pain worse.

I started my program with walking. Once I became comfortable with a specific distance and pace, I incrementally increased the distance and pace to a new level. I knew that repeating what was comfortable was not going to do me any good. I understood that only by increasing the stresses on the muscles would the body’s adaptive response cause my muscles to get bigger and process signals more effectively. Working in my favor was the very conservative and protective nature of the body, which always builds more muscle capability than the last stress it experienced. It is ironic that fibromyalgia can be described as a condition where the body’s protective nature is out of control, and I planned to use this protective nature in my favor.

I followed my walking program with a weight training program designed to bring tone and strength back to my de-conditioned muscles. Later, I added cycling, swimming and running. In retrospect, I do not think my choice of types of exercises was a decisive factor.  Rather, it was the sequence of moving from low impact exercises to higher impact exercises coupled with my willingness to continually push beyond the last level. This sort of approach to conditioning is often referred to as “going for failure.” It requires adopting a new paradigm: only by advancing beyond the place where you feel successful can you accomplish a much greater goal.

While the extent of my physical improvement is obvious, the depths of the psychological benefits have been so profound that they are immeasurable. Someone once described depression to me as lack of hope. Hope began for me the first week I started walking. It continues to build every day.

Today, my bouts are a little less severe, but far less frequent—and my recovery is faster.

I am proud of my accomplishments but have no illusions that I did it on my own. I owe a great deal to many my wife for her constant encouragement and support; the many researchers; my physicians; and the many dedicated people who provided me exercise guidance and participation in challenging sport activities.

My approach is not for everyone, but it was right for me. My improvement is not a result of some special strength of character. I simply applied my unique life experiences to the development of my individual method to deal with my condition. All people with fibromyalgia must find their own individual methods of coping. I hope that my story will encourage all who suffer and their health providers to find new creative approaches for a very challenging condition.

Bill St. John, the founder of Sclor Pharmaceutical, is a USMA Master Swimmer, a UST Triathlete, and a USCF Master Cyclist. He and his wife Pat live in Hawaii.