I Have Fibromyalgia/ Chronic Fatigue Syndrome, but it Doesn't Have Me!
What is my life like today?
I get asked this question often. I always like to answer: "I am a work-in-progress and I am okay with that, actually, HAPPY with it!" My life is never boring and I am able to do so much more than I ever imagined, having been once so sick."
Since the publication of my book, I am now the mother of two children, Alexander and Hildi, ages 7 & 12!
Both of my children have pediatric fibromyalgia, which they inherited from me. They both follow the Guaifenesin Protocol and Diet for Hypoglycemia and are doing WELL! We are all patients of Dr. St. Amand, and we have also seen Dr. Congdon.
You can find out more on my Blog: ThatFibroMOM.
I am grateful everyday for the life that I have now. I never want to go back to those bedridden days.
Six years, after I was diagnosed with fibromyalgia, I also learned that I had Obstructive Sleep Apnea. I use a
CPAP machine every night and highly recommend a sleep study be done, if you haven't already had one! Not everything is fibromyalgia!
I still have extreme light sensitivity, dizziness, and nausea daily. It's almost like a sea sickness. But, my headaches have greatly improved. As long as, I am strict on the diet for hypoglycemia, and I avoid my triggers, my headaches are more controlled. Although, the weather and hormones are still triggers that can get me.
I was officially diagnosed with Post-Concussive Syndrome, in May 2016, due to the head trauma that initially triggered my fibromyalgia crash in 2002. I attend vision therapy and highly recommend vision therapy to anyone who has had a previous head trauma, Wow Vision Therapy, in Grand Rapids, MI.
My children and I also attend physical therapy weekly and I get messages and chiropractic adjustments once or twice a month. I also walk and stretch daily. It's vital to keep moving!
How did you find the Guaifenesin Protocol?
I got very lucky. After visiting local doctors and two trips to Mayo Clinic in Minnesota, almost a year later, without any concrete answers; I found another local MD who specialized in acupuncture and soft-tissue manipulation. Thaddeus P. Srutwa, Balance in Life, LPC, in Spring Lake, MI.
He had a patient who had brought him Dr. St. Amand's book, What Your Doctor May Not Tell You about Fibromyalgia. She was six months into the protocol and doing well.
Dr. Srutwa believed in Dr. St. Amand's theory, that is would work, and he decided that we should learn the protocol together!
To this day, I tease him that he is the "Fibromyalgia Specialist of Western Michigan," because the majority of his patients are those with fibromyalgia, something he never imagined!
What bumps did you hit along the way while you were reversing your fibromyalgia?
One of my greatest challenges was finding my correct "clearing dosage" of the guaifenesin, so I could feel "tolerably worse." At one point, I was up to 1800mg a day, and getting slammed, experiencing more pain, than I should have in reversal. 300mgx2 ended up being my cycling dose. But, back then, there were more types of guaifenesin that we could use, and the market for it kept changing. It was also before Dr. St. Amand realized the effects of the blue dye and its caution.
Family members not supporting me in my new low-carb dietary needs was difficult at times, as food is used in our culture as "comfort." But, I persevered in order to mitigate my overlapping "reactive hypoglycemic" symptoms with those of my fibromyalgia. To this day, I still follow the Diet for Hypoglycemia and have made it a lifestyle change.
Are there any other doctors currently in practice that have been trained personally by Dr. St. Amand?
Yes, Melissa Congdon, MD, Fibromyalgia Specialist, on Facebook, is accepting new patients.www.melissacongdonmd.com
Watch: Fibromyalgia: Getting our Lives Back
Are there other Fibromyalgia Guaifenesin Protocol resources that you recommend?
The Fibromyalgia Treatment Center
This is Dr. St. Amand's only official web site.
The Fibromyalgia Treatment Center on Facebook. Run by Claudia Marek, co-author of What Your Doctor May Not Tell You about Fibromyalgia is a great resource for salicylate-free products.
Dr. St. Amand's online support group forum run by Claudia Marek.Will be phasing out in 2020. They have moved to Facebook: Dr. St. Amand's Guaifenesin Support.
Fibro(my)algia, Lyn Heath Van Bebber's, Facebook page is dedicated to the Guaifenesin Protocol.
Fibro Fighters on Guaifenesin, Laura Brown's, Facebook group is also a great resource for the protocol.
Get Help for Fibromyalgia, Fibromyalgia Patient Advocate, Lynn Phipp's Blog
Dr. Flora Stay, Cleure.com, and her husband have devoted their lives to help patients on the Guaifenesin Protocol by creating a company that offers salicylate-free toothpastes and beauty products. Proceeds of sales help to fund the City of Hope Fibromyalgia Research Project.
Andrea Rose, www.andrearose.com. Andrea was the first patient to develop a Salicylate-Free products company. Her company offers salicylate-free hygiene products and make-up.
The Fibro Pharmacy,
Dye-free, lactose-free Guaifenesin & Salicylate-free products are available from this company.
Fibromyalgia Research: City of Hope Research Center in Durate, CA, has an ongoing DNA study that three generations of my family and I are participating in. Their goal is to isolate the genes associated with FMS and find a credible diagnostic blood test. Published Work/ Scientific Research Papers may be found at: www.fibromyalgiatreament.com.
© 2019 Chantal K. Hoey-Sanders. All rights reserved.