There was nowhere left to turn. We had done everything the rheumatologist had told us to do: gentle exercise, physical therapy, seeing a psychologist; yet, pain still riddled my daughter’s body on a daily basis. She was not the child I knew before fibromyalgia overtook her life. Until then, my daughter never met a stranger. She could make new friends easily and naturally held conversations with adults. Now the pain induced anxiety makes her withdraw from simply speaking to a waitress to order a meal. She keeps her interactions to a minimum, never knowing if her anxiety will get beyond her control to an embarrassing state. I almost don’t recognize her anymore.
My prayers remained constant for her healing, for answers to help my child. In desperation, my prayer changed: “God, I know you can heal her. I need your wisdom to take the next step. I need to know how to get our girl on the path to getting her life back. I know you have a plan for her life. Help us get there.” A few hours later, a glimmer of hope and help arrived.
This desperate mama signed in to multiple chat rooms and groups hoping for support and encouragement from others. I had a small list from which I gleaned information and I decided to check them out. I clicked on a social media link for parents of children and teens with fibromyalgia. At the top of the page, a video was bookmarked, “Fibromyalgia: Getting Our Lives Back – Success Stories on the Guaifenesin Protocol“.
Getting Our Lives Back. Those words were perked up my heart. Our family had been flipped upside down with this mysterious invisible illness. It had affected everyone in some way. We struggled to explain this condition to her siblings when her exterior looked perfectly healthy. Understanding why their sister was allowed to skip out on chores, stay on her screen longer, always laying down and needing quiet, etc. was difficult when she seemed just as well as they were. Their relationship with their sister became strained as her activity lessened and her patience with them diminished. This was not how I wanted our family to continue, so I was definitely intrigued to watch how we could possibly get our lives back.
The gist of the protocol is the use of guaifenesin to break down the inflammation throughout the body. Essentially over a period of time, the condition is reversed, energy revived, and anxiety decreased. I wasn’t completely sold on this “miracle” protocol, yet I wasn’t discarding it either.
The protocol is described by Dr. St. Amand in his book, What Your Doctor May Not Tell You About Fibromyalgia. Within 48 hours of my Amazon Prime delivery, I had devoured the 414 pages, feeling more encouraged than I had in weeks. Finally, it seemed we had another option. While it would take some time to work out the specific details of the protocol, it definitely seemed promising. As a young teen, newly diagnosed, chances were that she would begin to reverse the symptoms sooner than those much older than her. After showing my daughter the video, explaining the logistics, and sharing several websites of teens documenting their experience on the protocol, she couldn’t wait to begin. It was necessary to finish the school year to allow her body plenty of time to work through the process.
Our summer was spent documenting the protocol process and her daily symptoms on a scale of 1 to 10. In the first month on the base dosage, her pain was at a level 9/10 and her anxiety was out of control. We knew that her symptoms would worsen as the medicine began to clear her system. Even though I knew we were seeing results, watching my child suffer was agony, however, her bravery and willingness to take the pain was beyond amazing.
To be continued…
Leah Lively 