- Last Updated: 04 October 2022 04 October 2022
In 1983, at 22 years old, I was diagnosed with spondylolysis and spent 11 months in a back brace. After a few months, I began having bouts of fever, sore throat, diarrhea, bronchial and sinus infection. I had been active in the martial arts and because the back brace limited my physical activity, my doctors believed these symptoms were “metabolic readjustment” to being sedentary, and that they would resolve on their own. After a year, it was evident that no such resolution was going to happen. I was spending about a week of every month bedridden and most of my remaining time managing intense muscle pain, fatigue and what I now know to be brain fog. I consulted dozens of health providers to no avail. Many were troubled by their inability to understand why I was experiencing these symptoms. Some were dismissive. One explained that I was malingering and referred me to a psychiatrist. In 1987, I was diagnosed with Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) by Dr. Anthony Komaroff.
I served as librarian and telephone counselor for the Massachusetts CFIDS Association (now MassME/CFS & FM Association) for several years following my diagnosis. I continued to work full-time, married and had children, struggling constantly to manage the effects of my symptoms on our family life and in my work. We lived through hundreds of crashes, made accommodations in every aspect of our lives and simply trudged through the day to day, fighting off the despair for lack of any effective treatment. Then, quietly and undramatically, my symptoms became milder and the need for bedrest less frequent. Eventually, round about the year 2000, my family and I began to talk about the illness in the past tense. Bewildered yet grateful, it would remain a mystery how, after 17 years, it just went away.
But twelve years later, in 2012, it returned with a vengeance. 2012-2014 were very dark years, which shook up my family, nearly collapsed my business and altered the course of my life. In 2014 my family and I travelled to England where I went to see Dr. Sarah Myhill. Using blood tests that were unfamiliar to my doctors at home, Dr. Myhill diagnosed me with mitochondrial myopathy. She prescribed a mitochondrial cocktail, including Ritalin, Glutathione, Ubiquinone and several other supplements. Having an actionable diagnosis was encouraging and led me to Drs. Felsenstein, Systrom, Sassower and Kaara in Boston. These doctors confirmed the mitochondrial myopathy diagnosis and identified other disorders including disordered ventilatory control, orthostatic intolerance, vestibular migraine, low IGA, preload failure, and rhinitis. In 2015 I underwent sinus surgery, started Mestinon and made some alterations to the mitochondrial cocktail. In 2016 I began shiatsu treatments, oxygen therapy and a Chinese herbal anti-viral formulation.
In 2018 I was well enough to begin volunteering again with MassME! I am grateful to be able to apply both my professional skills and my hard earned experience managing a chronic illness to help this great Association continue to grow and provide critical support to those of us who suffer with this dreaded illness.