Caroline's Testimony
I hate the word, I hate the syndrome, I hate what it did to me for so many years. Going to so many different Doctors for first a sore shoulder, then endometriosis pains and the horrible periods, then sore feet - bottoms like walking on hot nails, then muscle pains, then reflux and IBS, then allergy/ sinus problems, the itchy skin, but always the sometimes overwhelming tiredness - "you're low on iron" they said! All from fibro!!! Imagine that! Feeling sick a lot, even borrowing donated sick leave because I was tired or sick so much. After a while, Fibro brain, forgetting, mixing up things at times, though this was not too bad. And I especially remember when I was at my worst, after the 3rd baby, the mornings... waking, but not from a restful sleep, then slowly opening my eyes, not daring to move a muscle, being still, but then slowly slowly moving a little, testing, testing, because if I hurt, if there was pain, then I knew it was going to be another bad fibro day. That I might have to call in sick to work... embarrassed that I couldn't move without the pain and tiredness. Worrying on how to keep our household of 3 boys (1 with early juvenile fibro) and a husband with worse fibro than me, how to keep it running... but many times just too tired to care. Who would have thought my "normal" had a name, and it was "fibromyalgia". Doctors finally telling me I had it, a diagnosis with no cure. Or so it seemed. Searching for and reading articles on-line and everywhere, but finding a Doctor who was willing to help both my husband and me to try the guaifenesin pills - the green Perrigo pill, but with no dosing info or information on salicylates to guide us. After my husband had suffered so many symptoms, had so many diagnostic tests run, but still the Doctors couldn't diagnose his illness. So finally after meeting with the local Kaiser Hospital President, he approved and Kaiser paid for my husband's visit to the famed Mayo Clinic in Minnesota. "Fibromyalgia" was what Mayo said. So both of us - and with nothing similar in our backgrounds, but we both had it. Then, it was not as well known a syndrome as it is now. No ads on TV then. We were diagnosed in our late forties I think, first him then me, then one of our 3 sons. Though I think my symptoms actually started in my teens.
Finding by chance a speech in a Waikiki hotel. An iFoG Fibromyalgia presentation by Dr. Paul St. Amand in August 2003. The overflow audience, some sitting on the floor like us, but no one turned away. Life changing! It was the turning point in our battle with fibromyalgia. Also a lightbulb moment as our one time athletic and smart 6th grader was just starting to exhibit symptoms, the hip and feet pain, needing to sleep a lot, tiredness, muscle pains, the "space cadet" brain, the fibrofog. In the presentation, Dr. St. Amand had said, "it's genetic, and if both parents have it, the children have a high risk of having it too!" An "aha" moment for us! At last! We had a name for all our ailments. And more importantly, a treatment plan, a way to reverse the symptoms! Oh my! The road to recovery, to controlling the fibromyalgia has not been an easy or quick one for any of us. And it will never end. But with iFoG's help and guidance, the guaifenesin protocol, Dr. St. Amand's book, and supportive Doctors, we finally have this "beast" under control. We have our lives back. And we are all so so grateful! Learning in this life, that one can never ever give up. What a life journey it's been for us!
PS. The names of the amazing Doctors who believed us , who believed that our fibromyalgia symptons were real, and who listened, they with fitting names - thank you Dr Love, and for our son, Dr. Kam (no, not an Annette relative), and Dr Saito .