There are many theories about what causes fibromyalgia /chronic fatigue. There is a doctor who thinks it is caused by a deficiency of vitamin D and one who thinks it is caused by too much vitamin D. There is one who thinks it is caused by a thyroid deficiency and some who think it is triggered by infection. Some suggest that it is just an over-sensitivity to pain signals in the brain. Others blame flouride, inflammatory foods or toxins in the environment or stress hormones or lack of deep sleep. There may be merit in these theories, and they are not all mutually exclusive.
Most of the conventional treatments for FMS/CF just deal with symptoms, and not very effectively at that. They have no effect on the cause and no possibility of correcting the problem or preventing its progression. Dr. St. Amand has dedicated his career to the study and treatment of this misunderstood disease. He believes that all the symptoms of FMS result from one genetic defect which, if untreated, eventually leads to osteoarthritis.
I don’t pretend to be an expert; I just plan to see what works for me and report on my experience.
Dr. St. Amand’s guaifenesin protocol has three main parts:
1. You must discover your correct dose. You start low and increase the amount in timed increments until it starts to work. When you start to feel dramatically worse, you know you have reached the proper dosage to start reversal. Dr. St. Amand’s warns that the treatment is not easy. Some liken it to having a bad case of the flu. The time it takes to get through the reversal process depends on how long you have had the condition. It may take as long as two months for every year that you have had symptoms. That works out to a formidable 22 months for me, but I’m hoping that since that estimate is a worse case scenario, it won’t really take that long. Good days are supposed to be interspersed with the bad ones until the bad days diminish and disappear.
2. Another important part of the system is that you must avoid any topical substance that contains salicylates. We are most familiar with salicylates in aspirin, but all plants contain them. Salicylates preferentially bind to the same receptors as guaifenesin and block its absorption, so all products that list plant oils, gels, or extracts (except for wheat, oats, rice, soy, and corn) must be eliminated. There is no problem with eating salicylate-containing plants; it is only products that will stay in contact with the skin that block quaifenesin. It is better to be safe and eliminate them all than to risk negating the treatment. Herbal supplements must also be avoided, since they are taken in greater quantities than what is naturally found in food. Rather than learn all the chemical names and scrutinize every label, I just bought the minimum daily necessities from a store that specializes in salicylate-free products. It may actually save me a lot of money in the long run since I stopped using some expensive cosmetics, lotions, and creams and replaced them with much simpler products.
Some critics of the protocol say that it is too difficult to follow and that no one could possibly do it correctly. I’m baffled by this complaint—how could anyone believe eliminating some toiletries and giving up herbal supplements could be worse than living with fibromyalgia and chronic fatigue? I can only think that perhaps fibro fog has addled their brains and affected their judgment.
3. The third layer of the protocol is diet, although this part does not apply to everyone, only to those who have hypoglycemia (estimated to be 40%). Dr. St. Amand tells his patients that if they have hypoglycemia, they must deal with it or they will not get better. He has two diets; both are low carb, one strict and one liberal. In my opinion, reducing sugar and starch is something we all need to do anyway and it is not really difficult. You just have to decide to do it and make the effort to find good food that you enjoy so you don’t feel deprived. I’ve been eating a diet similar to the strict one for eight years and it has become second nature.
If, as some allege, it is the low-carb diet that is responsible for Dr. St. Amand’s success—I’ve been there; done that. It changed my life for the better, and I will never go back to my old sugar-junkie habits—but I still have FMS. I’ve also tried a lot of other things; some of you probably have as well. If I were susceptible to the placebo effect, surely some of them would have worked.
I started the guaifenesin protocol about 6 weeks ago. I progressed from a dose of 600 mgs per day to 1200 and then increased up to 1800 with no results. I will stay at 1800 for two months and then go up to 2400 if nothing changes. It is a strange situation to be hoping to wake up in misery in order to know that the system is going to work. I’m not looking forward to being more tired or in more pain, but if there is a chance that this will work, there is no way I’m not going to try it. The choice is to do nothing and continue to suffer or to suffer with a purpose and with the hope of getting better. That is an easy decision.
R. Paul St. Amand, M.D., is a graduate of Tufts University School of Medicine. He has been on the teaching staff at the Los Angeles Harbor/UCLA Hospital, Department of Endocrinology for over fifty years. He is currently an assistant clinical professor at the UCLA School of Medicine.
Claudia Craig Marek, M.A., is a medical researcher tutored, trained, and taught on the job as Dr. St. Amand’s assistant. She has co-written three books with Dr. St. Amand and one of her own.
What Your Doctor May Not Tell You About Pediatric Fibromyalgia: The Program that Helps Boost Your Child’s Energy Level
What Your Doctor May Not Tell You About Fibromyalgia Fatigue: The Powerful Program That Helps You Boost Your Energy and Reclaim Your Life
The First Year: Fibromyalgia: An Essential Guide for the Newly Diagnosed (First Year, The)
Note: A reader asked me to mention the social networking site that he has started for fibromyalgia sufferers and their families. Check it out at: http://fibromyalgia.ning.com/
This is fascinating stuff! Whenever I read up on fibro or CFS I think immediately "neurotransmitters!" There are somewhere around 50 – 100 substances which either are or moderate the effects of neurotransmitters, depending how you count them. Then neuroendocrines are intimately related to the rest of the endocrine system.
My experience is that my "Atypical" depression is closely linked to blood glucose variations (reactive hypoglycemia and impaired glucose tolerance – ie. my BG shoots up after eating inappropriate quantities of carbs, such as dieticians prescribe, then drops precipitously due to a lack of Phase 1 insulin and an overabundance of Phase 2) which knocks on to a bunch of other stuff including norepinephrine and dopamine.
Getting the BG under control has greatly improved a whole lot of things I never realised were related (and some of which I was told categorically I didn't suffer from). There are a lot of other factors too, imbalances of fatty acids, lack of fat-soluble vitamins like D3 and K2 in low fat diets etc.
Currently I'm reading your blog in chronological order so I look forward to any posts you've written that I haven't read yet.
It was comments like yours that convinced me to try guaifenesin. Guai has no side effects, so the fact that fibro gets worse on it seems to prove Dr. Amand’s theory about how it works and shows that it is not just a placebo effect.
I don’t know how long I will last if it gets really unpleasant, but the alternative doesn’t sound very good either. I have already been told that I will need a knee replacement eventually. That may be inevitable, but I’d like to avoid needing two. (I have lots of other joints; there’s no way they could repair them all—there are 30 joints in the fingers alone!
One of the Doctor’s books told about a patient who had to take aspirin for stroke prevention. He was advised to take aspirin every other day and a double dose of guai on the alternate days. This would slow down the time it took for him to clear, but perhaps it would also lessen the symptoms. That might be a possibility.
Thanks so much for your comment. Let me know how you are doing.
That’s certainly worth trying.
I tried Dr. St Amand’s protocol for 6 months. I felt so trashed when I took the guai that I was sure it would work. Finally, though, I quit. I just couldn’t go on feeling so much worse with no sign it was actually helping at all. I hope it works for you though.
My sister lives in Canada. When she was diagnosed with fibromyalgia, her doctor linked it to celiac disease (which runs in our family). When sis completely quit eating all wheat and other gluten grains, nearly all fibromyalgia symptoms ceased.
No, no change yet in the left thigh, although I am feeling much improved today. I’m still assuming this will work. There are several possibilities: I may not have reached my proper dosage yet, I may be using something that is blocking the guai, or I may be one of the 5% who have reversal without ever feeling very bad, which would be very good indeed. Perhaps when I get to the one-month mark at the new dosage, I will see some concrete evidence of improvement.
I’m sorry to hear about your niece, as that is probably worse than FMS. I had a false positive on one of my blood tests that indicated that I might have something else. After looking at some of the other possible explanations for the results, I was quite relieved to find that I “only” had FMS!
Thanks for this very interesting series even though I don’t have fibromyalgia myself. However, my 35-year old niece, who was thought to have this for quite some time, has recently been diagnosed with ankylosing spondylitis instead.
I’m sorry this protocol doesn’t seem to be working for you. Have you noticed any changes in the lumps in your left thigh?