We will be publishing articles, poems and drawings from members and their families to give the community insight into their lives.
Living with Fibromyalgia - Finding a New Type of Strength
By Sue Ridler
The weight room at the neighborhood YMCA is an intimidating place for a twenty-something woman who has never lifted weights before. Determined to make the most of my student membership, I went in every morning separating myself from prying eyes and conversation with punk music streaming into my ears from my ever-present walkman. I had always been active. I was taking a variety of dance lessons by age eight and playing volleyball since I was 11. Weight lifting though? This was an entirely different kind of activity, one focused on seeing and feeling physical results. I was ready to embrace a stronger, fitter me. I was there at least often enough for most of the guys hanging out to stop leering at the "new girl" and even earned the occasional acknowledging nod. I knew how important it was to workout correctly so I worked hard on my technique, a discipline well learned from studying dance. Although the free weights I lifted never increased past eight pounds, my muscles did start to tone up and all of a sudden I began to look strong. My mesomorphic body loved every minute of the workout and my muscles grew with only a little effort and a lot of dedication. Braving the weight room and lifting weights was one of the most liberating experiences of my life so when the pain in my hands began to arrive each morning, I went into denial. I told myself, "It's normal. The muscles in your arms get sore from a workout, so why would your hands be any different?" I kept going to the gym. For the whole summer I didn't let anything get in my way of getting and staying physically strong.
What I did not realize is that I had a sleeping disorder which affected muscle recovery. The more I worked my muscles, the more the pain developed. Chronic pain. When I finally could no longer deny there was a real problem, that lifting weights was making it worse, I stopped. Cold turkey. Unfortunately, it was too late. Lifting weights set in motion the deterioration of my health. In combination with my sleeping disorder, it caused my neurotransmitters to come offline a little more each day. My hands still hurt every morning and I joined that YMCA ten years ago. Today I wake up with pain all over me like a torturous blanket, covering me through a night of empty dreaming.
I knew I had problems sleeping and suffered from chronic fatigue but doctors never took the issue seriously so I learned how to put up with it. I spent the next several years seeing specialists who looked at my hands and found nothing wrong, they could not see what was causing me pain. Over time, my muscles "failed" one by one. I developed: chronic pain in my feet, aching knees, ripped shoulder muscles, torn abdominal wall, etc. When the pain finally developed in my neck and back there was nothing left but agony. I tried to work from home but even sitting at a computer in the comfort of my favorite chair was impossible.
The diagnosis was made by the same rheumatologist I had seen years ago for the inexplicable pain in my hands. Back then, the pain was only in one area, therefore, I did not have the 11 out of 18 spots required for a diagnosis of Fibromyalgia. I was in the beginning stage of the illness and she did not know.
Years later I had another appointment for her to look at my hands. I was still searching for an answer. During the examination she looked over my chart. When she saw the numerous specialists I had seen and the numerous injuries that had occurred since my last appointment, she asked me if I had problems sleeping. I was shocked, not understanding how the question could have anything to do with my hands. I admitted that I had numerous sleep-related issues: temporomandibular joint disorder (TMJ), talking and walking in my sleep, rarely experiencing restorative sleep... She tested me for Fibromyalgia and I finally had a diagnosis. But the damage was done.
After leaving her office I finally knew what was wrong and that I had an incurable illness. I also knew I had to make significant changes that would benefit my failing health. Two months after the diagnosis my husband and I moved across the country to the milder West Coast only a week after our wedding. Packing up what we could fit into a small moving truck and giving away everything else, we made the biggest change of our lives. Despite the change in climate, my health did not improve. I saw more doctors, specialists and a naturopath. I went on cleansing diets, tried massage therapy, acupuncture… nothing made a difference. Admitting I could no longer work, I applied for disability with an aching spirit.
Today my days are filled with painkillers, antidepressants and supplements. The chronic fatigue is overwhelming and my medications intensify the prevention of clarity of thought. My life is filled with dreamless nights and painful foggy days. I know the life I had ten years ago is gone. I am no longer athletic, agile and free of constant pain. Yet on the days when I lose hope and begin a dangerous bout of depression, I try to see my life from the outside. When I do, I see a woman living in the mountains taking a beautiful walk in the woods. On good days she practices yoga and might even meditate for a little while. She has become an expert on healthy living and has embraced vegetarianism. Once intimidated by her manual camera, over time she learned how to document her life among nature with photography. Recently she even picked up a paintbrush for the first time since kindergarten. Now and then her muse comes back and she is inspired enough to write poetry.
Although a prisoner to pain, in many ways she has found her way to a life beyond her childhood dreams. Her muscles may fail but her spirit soars beyond pain. She finds freedom on cedar woodchip paths and laughter in the rain.