“I first suspected I had fibromyalgia when I saw a commercial for Lyrica on TV. It said “do you have chronic widespread pain?” I thought, yeah. I went to my go to place for info….Amazon Books….I searched fibromyalgia..the first book that came up was “What Your Doctor May NOT Tell You About Fibromyalgia” It got awesome reviews so I bought a used copy. As I read through the pages I actually cried.
It was like reading my life…I went through my lotion, shampoo, toothpaste etc and made sure I didn’t use any topical products that contain Salicylates. The book said Salicylates will block the guaifenesin from working. It sounds strange but that’s why that study Dr.St.Amand did in the 70’s failed. I bought some guaifenesin at the drug store and started taking it right away. It said on the package not to crush or cut the pills. The book said to take 300mg but the pills were 600mg. I didn’t think I should cut the pills so I took a whole pill twice a day.
A couple days later I had my first appointment with a rheumatologist. I told him I think I have fibromyalgia. He said maybe. I told him I had started taking guaifenesin for it. He said the guaifenesin protocol was snake oil and he didn’t recommend it. He also said when you have chronic pain you just have to take drugs to help with the pain and just live with it. I felt crushed. I cried right there in his office. He was rated one of the top 100 rheumatologist in the country.
I then looked for support groups on Facebook. I spotted a group on guaifenesin so I joined to see if they had success. I thought the group may be shady because there were only 200 people in the group. (I learned later the group had just started) The people in the group were very nice. Several of them were patients of the doctor who wrote the book, Dr.Paul St.Amand.
I had an appointment with my general practitioner a few days later. I told him I’m pretty sure I have fibro. He said yes, I know you do. (Nice of him to confirm my diagnoses of myself.) I brought my book with me and asked him what he thought of the protocol. He said how old is that book? That treatment was proved not to be effective 20 years ago. I said 2012. I told him about the ladies in the Facebook group that said they have reversed their symptoms completely on it. He said I could try it if I want. He said it won’t hurt me. I took that as his okay.
I restarted the protocol properly with the support of the Facebook group. I learned for the treatment we are supposed to cut the pills in half to start with. I started keeping a symptom journal because the ladies in the group said it is very important to keep track of any subtle changes in symptoms. You see YOU have to figure out what your “clearing dose” is. Not everybody needs the same amount of guaifenesin to remove the fibro phosphate deposits from their body.
I took 300mg x 2 for 7 days as I was instructed. I felt no change in symptoms so I increases to 600 x 2 as we are supposed to do. Three days later I got a nasty taste in my mouth. It’s hard to describe but kind of sulfur, metallic, burnt taste. I went to the group and told them. I got a couple comments that others had experienced the same and this is a change in fibro symptom I was looking for, and that I had found my clearing dose. They also said the taste wouldn’t last long, thank goodness, it didn’t, only a few hours that day, a couple hours the next day and one more day about a week later. A couple days later I started to get ringing in my ears, another symptom I hadn’t had before, except after a concert…LOL. Not much happened for 6 months. I was getting discouraged. Six months and I still wasn’t feeling any better.
Until one day I woke up and realized I had slept through the night, 9 hours. I couldn’t believe it. I never sleep like that. The next night, the same thing. I slept 7-10 hours every night for over a week. I felt better because I was sleeping. I stopped taking the drug Trazodone I had been taking for 12 years to help me sleep. The pain in my hips was going away too. I had gone to pain management for injections in my hips and neck but both were feeling better.
It has now been just over a year on the guaifenesin protocol. I have much more energy, but still get tired easily. I have much less pain, but still hurt a little. My memory is still very bad, but congnative issues are the symptom I have had the longest. Dr.St.Amand says the symptoms you have had the longest will be the last to reverse, so if that is true it makes sense.”
~Carmen
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