By: Jody Davison
My 65th birthday is just a few days away and I am happily heading into my retirement years during a pandemic in spite of a fibromyalgia diagnosis over 20 years ago. I moved to the coast of South Carolina a year ago and started painting and furnishing the little retirement home my husband and I purchased. Pulling up into the driveway for the first time and glancing around the neighborhood, I knew I wanted this house even before I went inside.
The view from the front porch overlooks green grass, live oaks and palmetto trees and a beautiful pond that attracts wildlife. It was perfect! After several months of settling in, however, I missed working with children and found a part-time job at a local Montessori School. Then the shutdown came, just as I was beginning to really get to know the school and my new co-workers.
However, now we are opening up again and struggling to adjust to the new “normal.”
After years of living with this diagnosis, adjusting to a new normal is old routine for me. My symptoms hit hard following surgery for endometriosis in the mid 1990’s and I was plunged into surgical menopause for months afterwards. The round-the-clock hot flashes prevented any kind of solid sleep and drained my energy reserves week after week after week. My doctor finally approved hormone replacement therapy and I slowly began to improve.
However, as symptoms of muscle pain and stiffness and poor energy continued, and I struggled to return to my job at The American Red Cross, I started the rounds of visiting one doctor after another and another, seeking answers and possible solutions. I eventually made my way to Duke University to see a doctor who evaluated my work station and gave me a splint for carpal tunnel symptoms, as working on a computer and talking on the phone all day had really exacerbated those problems.
This wonderful doctor had me visit a neurologist to rule out multiple sclerosis as a possible diagnosis. After that was completed, he diagnosed fibromyalgia using the tender point exam. Because I had never heard of fibromyalgia, the diagnosis meant nothing to me. It was just another opinion in a long line of doctors I had seen, and I dismissed the term as meaningless to me, and continued to struggle to go on as best I could. Eventually, I walked away from a career I loved, my husband walked away from me, and I heard about Lynn Matallana and The National Fibromyalgia Association in a magazine article. Wasn’t that what I was told before? Maybe I should find out what the heck this was all about!
Truly, the NFA began to shed some light into the darkness that my life was devolving into many years ago, and for that, I am very grateful.
I decided to see a local rheumatologist and the diagnosis was confirmed, prescriptions written for muscle relaxers and instructions about exercise were given. I tried to manage stress, stay as functional as humanly possible, and keep a roof over our heads. As a single parent, there was no other option. Downsizing and moving to a small town with lower taxes and better schools drained my energy. I met some ladies in a local support group who shared information about supplements and doctors with me, then made an appointment to see a specialist who practiced nearby.
With my energy levels so taxed on the day of my appointment, he diagnosed me with chronic fatigue syndrome, which today is often termed CFS/ME. So I had a second diagnosis now. I began injections of high dose B12 which was compounded by a pharmacy nearby and it was quite helpful as I adjusted to living in a new place and parenting on my own. Family support was very helpful and friends in my new church were a huge blessing too. Eventually, I started to date again, and attempted to look as “normal” as possible, but it wasn’t always possible to hide how badly I was feeling.
Simply put, the disease progressed, and I knew I was getting worse. Nights were torture and sleep was fleeting, and daytime endeavors seemed like a blur ending in a collapse on the sofa and a bowl of cheerios. I often could not make it to support groups and sometimes had to miss attending church because weekends required bed rest as much as possible. These were dark days. The internet and email was beginning to gain ground and my college student demanded internet service. Slowly, the information and connection available online began to open up a whole new world for us.
One day, I went to the mall and perused the books in the health section, searching for something new about fibromyalgia or CFS. I found What Your Doctor May Not Tell You About Fibromyalgia. The cover described a revolutionary treatment capable of reversing the disease process and I was instantly intrigued. I knew I was losing functionality. My spine had become my most painful symptom. There were times I would sit down in front of my computer to check emails, and have to immediately get back up to relieve the pressure on my spine.
I could not sit on a hard surface, such as a folding chair or bleachers. The chairs at the support group were wooden, and that was another reason to stop going to the local group meetings. Rolling onto my back in the middle of the night would cause me to wake up, throw off the covers and tearfully pace the living room floor to relieve the burning and pain in my spine. Sometimes, it felt like my brain was too large for my skull. What was going on?
Reading the book, I felt like I was reading my life story, and identified with the voices of the many patients who were quoted throughout the text. The author was an endocrinologist in California. Did I need to see an endocrinologist? They treated diabetes, didn’t they? I wasn’t diabetic. The scientific explanations in the book were over my head and I was only sure that there were people who improved and sometimes it was a dramatic improvement.
I looked online and found a woman who lived in my state who had learned to do this doctor’s protocol, the guaifenesin protocol. I was interested in talking to her to find out if this whole thing was real or if they were just selling supplements or something. She offered to meet with me. My husband had to drive because I was too ill at the time. I knew she was for real and had been through even worse than myself once we had a chance to talk and get to know one another.
She changed my life and put me on course for a steady improvement. I started the guaifenesin protocol October 28, 2007, what I now call my Guai Birthday. I was 52 years old. Over time, the treatment did exactly as was predicted and I began to have good days, with less pain, and more energy. My life has been transformed, albeit slowly, but it has happened and I am doing things that I had once thought I would never do again. I am extremely grateful!
