Or, How I'm Kicking Fibromyalgia's A**...
Fibromyalgia and Chronic Fatigue Syndrome are still largely gray areas in medicine. The trick is that there are many possible causes of chronic fatigue and/or pain: mononucleosis, Lyme disease, Epstein-Barr virus, thyroid or hormone imbalance, hidden infection, or simple overwork or burnout, among others. Doctors do their best to diagnose and treat symptoms, often missing a larger, underlying cause.
This, unfortunately, is my story. Misconceptions, as well as inherent problems within our healthcare system, prolonged my quest for an answer to the mysterious, cyclic fatigue that has tainted my whole adult life, and which finally brought me to my knees earlier this year.
After 16 years, I believe I’ve found the best available answer. It’s the work of an 84-year-old endocrinologist, R. Paul St. Amand, M.D. His 40 years of research and clinical evidence fly in the face of some popular theories – and his treatment is the first and only thing that is working for me.
Why This Article?
My passion for overall wellness (as opposed to weight loss or physical strength alone) stems in part from my own longtime struggle with fatigue and illness. I’ve seen others struggle with similar fatigue, pain, muscle dysfunction, and other debilitating symptoms, suffering needlessly. I am living proof that you can have an ultra-fit, healthy lifestyle and strong mindset, yet still become debilitated by a mysterious condition that slowly takes over your whole body.
The work of Dr. St. Amand is recognized by few, but I feel it’s a goldmine. The Doctor has a low profile, because he does not practice medicine for profit, and does not buy in to corporate pharmaceutical schemes. He practices out of passion, as he and his children have also suffered from fibromyalgia. Dr. St. Amand and his children now live full and healthy lives, thanks to his treatment, the Guaifenesin Protocol. Not to mention, the 83-year-old Doctor looks 75 tops, and is sharp as a tack.
Popular treatments for fibromyalgia involve expensive medications with significant side effects – sometimes as bad as the original illness. --For example, Lyrica, Cymbalta, potent painkillers, muscle relaxants and narcotics. Often a patient will get temporary relief from some symptoms; but all symptoms still worsen over time.
Though the Doctor himself has fibromyalgia, he believes that most sufferers are women, with a few exceptions. Men can have symptoms, or can just be carriers of the related gene. He and his team do not yet know the reason for this gender-related difference.
What IS Fibromyalgia?
Fibromyalgia is a syndrome. Contrary to popular belief, it is not an auto-immune disorder. Nor does it involve “toxins” of some kind. Another popular, neurological theory is that the pain and some of the fatigue of fibromyalgia are due to hypersensitivity of pain receptors in the brain. Medications used to treat the problem dull perception of pain and good sensation. It’s a temporary, pain-masking situation. I ask, What about the many other symptoms involved? –And what about the potent, unpleasant side effects of the medications?
Dr. St. Amand has isolated a genetic dysfunction of the kidneys that prevents the body from expelling excess phosphate. Phosphate occurs naturally in the body, in small amounts; and in most foods. This fundamental imbalance increases steadily over time, stressing all physiological systems. With a gradually growing amount of phosphate build-up in soft tissue and bone, the body can no longer recover effectively from normal stressors.
Phosphate is one of two causes of significant muscle fatigue, along with lactic acid (Westerblad, Allen and Lannergren, 2006). Hence the frequent, generalized, flu-like ache and weakness in my muscles, which compromised all of my triathlon racing post-2003, and forced me to forfeit many events!
The body keeps attempting to deal with the excess phosphate. Phosphate gets tucked into soft tissue and bone, but the level eventually becomes unmanageable. The bloodstream does not tolerate free phosphate, and pulls calcium out of the bones to bind to the phosphate. Excess phosphate also interrupts A.T.P. production in cell mitochondria, which leads to greater fatigue.
Over time, the phosphate:calcium dependency causes bone degeneration, leading to unexplained osteolytis and then osteoporosis.
This phosphate imbalance also indirectly creates a network of lumpy, painful spots throughout the body. Fascinatingly, the muscular pattern is specific and uniform across patients, no matter their ages or backgrounds. For example, all of Dr. St. Amand’s thousands of patients have had lumpy, tender points in exactly the same, specific areas in the neck, upper back, abdominal, left hip, and left outer thigh muscles. Part of Dr. St. Amand’s diagnostic process is to map the muscles with his hands, and mark the lumps on an anatomical diagram. At successive visits, he repeats the mapping process, blind to earlier results.
Dr. St. Amand’s theory is still considered “a theory.” However, no-one has been able to disprove it. The clinical and academic proof the Doctor has (of the kidneys’ involvement, and of the genetic component) make the most sense to me of any related studies I’ve read. It’s possible that what he calls “fibromyalgia” is one of a few, similar conditions – I don’t know for sure. But, I know that I fit his diagnosis, and the treatment is working on me and several thousand others.
NOTE: Dr. St. Amand has found a correlation between fibromyalgia and hypoglycemia, or carbohydrate intolerance. These two conditions have several overlapping symptoms. Hypoglycemic patients also commonly have faintness, hunger tremors, sugar craving, and weight gain. About 30% of his patients have both. I do not have hypoglycemia, and am not covering that aspect in this article.
What Are the Symptoms?
Fibromyalgia involves the entire body, precipitating a myriad of symptoms. Different people display a common symptom set, plus a number of unique symptoms, depending on genetics.
These are the common symptoms as identified by Dr. St. Amand:
• Fatigue, irritability, anxiety, depression, impaired focus and memory, insomnia, A.D.D.
• Pain and generalized stiffness and ache in all muscles, tendons and ligaments
• Shooting pains and throbbing ache in muscles or joints that prevent or disrupt sitting or sleep
• Arthritis-like stiffness in joints, plus excessive and increasing joint “popping”
• Restless legs
• Headaches (moderate to migraine level), dry, itchy eyes, blurred vision, dizziness, ringing in ears, sensitivity to light and sound, allergies
• Unexplained sweating, skin rashes, brittle nails, dull or thinning hair, excessive cold or heat, itchy and “prickly” skin
• I.B.S., difficult digestion or food intolerance, gas, pain, acid reflux, other G.I. issues
• Frequent urination, bladder pain and/or infections, pelvic pain, vaginal pain or burning, vulvitis
• Chronic yeast infection, vaginal and systemic
• Heart palpitations, and/or arrhythmia
• Unexplained weight gain, low-grade fever, low immunity to infection, morning eyelid and hand swelling and puffiness that changes to ankle swelling by evening
Here’s the truly weird part: The fatigue and other symptoms are cyclic. So, you keep thinking you’re getting better, and you look and act OK for short periods of time, but you regularly dip into an ill state. You may think you’re over-working, over-training, or doing something else wrong…but the “crashes” happen no matter what you do or don’t do. This cyclic nature also makes it impossible for others to understand what you’re going through, and you end up isolated in dealing with the illness.
For greater detail on the cause and process of fibromyalgia, see Dr. St. Amand’s helpful book, What Your Doctor May Not Tell You About Fibromyalgia. The new, revised edition is due at the end of this year. I also recommend I Have Fibromyalgia But It Does Not Have Me! by Chantal K. Hoey-Sanders. Sanders’ career as a Spanish teacher was rudely interrupted by the rapid and mysterious breakdown of her health. Following Dr. St. Amand’s treatment protocols for fibromyalgia and hypoglycemia restored her health, and enabled her to fulfill her dreams of having a baby, and resuming her teaching and writing.
Why Didn’t I Find the Treatment Sooner?
When I first found Dr. St. Amand’s website in 2003, I was discouraged and skeptical. The verbiage from the Fibromyalgia Treatment Center emphasized chronic pain as a central symptom. The other symptomatic patterns described sounded very familiar, but at that time I did not feel acute, intense pain. I had cyclic, chronic fatigue with flu-like symptoms, overly tight muscles with slow athletic recovery, and gradually worsening psoriasis, G.I. symptoms, and anxiety/depression.
Now, in hindsight, I know the fatigue, tightness and soreness levels in my muscles have been abnormal for many years; but how do you know when you only have yourself to compare to?
So I continued living my life as well as possible, working triathlon training around the major fatigue “crashes” I had every 3-6 weeks, sleeping as much as possible, researching, and trying just about every remedy under the sun.
I was only able to finish two of 13 half-iron triathlons without several urgent stops at the porta-potty. Those times, I went entirely gluten-free, avoided fiber during race week, and was lucky to be on an “up” cycle on race day. I did have to stop briefly, but stumbled to the finish line in well under five hours, and then headed straight to the restroom.
All of my races after 2003 were compromised by a growing state of muscular fatigue and weakness. On the worst days, it felt like the flu. On the best days, I cruised through events two effort zones below target. Yet, no doctor could find the source of the problem. I kept running, feeling that if I could still do triathlons, then the mysterious illness hadn’t got the best of me.
Fibromyalgia is not a muscularly degenerative condition. In time, it does degenerate bone and organ tissue. However, if it’s left untreated, you gradually lose muscular strength and function, much like with a degenerative muscular condition.
The worst part, for me, has been the overbearing, debilitating fatigue. With high pain tolerance and the ability to modify exercise to suit, I can deal with pain, injury and some compromise. But the inability to DO things is mind-blowingly frustrating and saddening. For a curious, adventurous, driven mind, missing out on life just isn’t OK.
How Does Fibromyalgia Progress?
Many people have a single, very bad crash, or perhaps multiple crashes, with one that finally debilitates them to an intolerable level. Again, the up-and-down nature of symptoms makes it very hard to know what’s going on!
I personally crashed with a terrible flu at age 23…and then couldn’t completely recover. For several years I cycled up and down every few weeks, thinking I was getting better as I continually improved my lifestyle, and even got triathlon-fit. But I always buckled too easily under work, emotional, or viral stress, and crashed pretty hard a couple more times. Since childhood, I’d been slow to recover from illness. All the while, I did trial-and-error on my body with various remedies, to no avail.
Having psoriasis (a genetic, auto-immune skin condition) complicated my picture further. Ironically, anything that boosted my immune system made the psoriasis worse; and anything that improved my skin made me feel sicker.
Finally, a long series of miscarriages and related surgeries took me down by January of this year. Despite a multitude of doctor visits and tests, I got even worse through the spring. That’s when a local hematologist recommended I see Dr. St. Amand.
At one point in my health troubleshooting process, I drew a diagram of how I’d felt over the years. My detailed triathlon training logs revealed a bigger picture of symptoms and energy level over time.
When I first saw Dr. St. Amand in May of 2011, he assessed and diagnosed me, and then explained the illness. As he spoke, he drew a diagram of how fibromyalgia progresses. I sat and stared at an almost-exact replica of my own drawing.
This is Dr. St. Amand’s version (excerpted from his book, What Your Doctor May Not Tell You About Fibromyalgia):
How Does the Treatment Work?
Guaifenesin is the expectorant ingredient in cough medications, like Mucinex. It is sold over-the-counter, and has no known side effects, in doses up to 4000-6000 mg. per day. Guaifenesin has been for decades to treat gout (liver disease), and even arthritis.
The Guaifenesin Protocol is a titrated, twice-daily dose of gauifenesin, which enables the kidneys to expel excess phosphate normally. It “opens up the plumbing,” so to speak.
The treatment is not a cure, but completely reverses symptoms, to a point where the patient is stable and well.
The reversal process looks like this:
You “cycle” with pain and fatigue symptoms, with cycles gradually getting less intense. Eventually you stabilize with no symptoms, and feel well. Many patients report feeling better than they’d ever felt, as many start developing symptoms early.
There are two caveats to the treatment:
a) You must avoid high concentrations of salicylic acid, as these can block the action of guaifenesin. You can eat normally, but must avoid topical products containing salicylates (very generally - plant oils, gels, or extracts, plus any chemical with “sal,” “camph” or “menth” in its name).
b) The treatment takes your body in reverse through the pain and fatigue cycles you went through to become really sick. It takes time – how much time depends on how long you’ve been ill, and how physically active you are. This means you may suffer even more in the first few weeks or months of the protocol. However, you can adjust dosage to minimize suffering.
If you don’t have fibromyalgia, you will not respond to guaifenesin by feeling worse at first. You’ll probably feel no change, except for improvement in arthritis symptoms if you have those. This phenomenon supports Dr. St. Amand’s theories (a la television’s popular character, Dr. House).
The Guaifenesin Protocol is not for the faint of heart. But, you will get your life back. And, you can stop any time, if you need a break, or feel it’s not for you.
To read real stories of recovery, visit the Gauigroup forum, and search for “progress report.” And, read the profiles of Fibromyalgia Treatment Center’s volunteer assistant team, all of whom have recovered.
Am I Better Yet?
I am five months in with treatment. I have increased my dose a couple of times since I started, thereby increasing my pain and fatigue again. The Doctor recommends increasing as much as you can tolerate, as a higher dose = faster recovery. As it is early, I still experience daily pain and fatigue, which worsens in short cycles.
Exercise also speeds recovery. I do whatever I can to continue low-intensity exercise. Despite my low energy level and weaker body, I still look relatively fit. I also practice exemplary nutrition, and sleep as much as possible.
Over time I’m improving significantly. At my worst in the first half of 2011, I was functioning and feeling about 30% (very bad). Now I average 60-70%. My detailed, daily symptom log tells the story.
Here are the huge improvements so far:
• 24/7, monster headaches are 90% gone.
• Facial and hand puffiness is greatly reduced.
• Digestion is better: I can eat small amounts of gluten and dairy again, without G.I. distress. My stomach feels more comfortable during exercise, and all the time.
• Shortness of breath/oxygen is 80% gone. By spring 2011 I could not walk up a hill slowly without stopping to rest. I also could not talk at the same time I was walking. It felt like running a 200-meter sprint! Now I’m hiking, riding and even jogging uphill again, on better days.
• General G.I. distress is almost gone (bloating and other unpleasant issues).
• Major pelvic cramping and pain is gone.
• Body temperature is up 1 degree (it was too low my entire life until now!).
• Blood pressure is up to normal (from pass-out low).
• Knee and left thigh pain are 90% gone. Back, neck, hip, and shoulder pain is 60% better. A few months ago I could not kneel on the floor, squat any loads, run, or swim at all.
• I’m mostly free of intermittent, unexplained depression and anxiety.
• I can jog, ride my bike, and even swim a little. A few months ago, I could not run or swim due to overwhelming joint pain and extreme shortness of breath.
• Arthritis symptoms in my hands are mostly gone (they still cycle on and off a bit).
• About half the lumpy, tender points in my body have disappeared. (Since some areas “clear” more rapidly than others, this doesn’t necessarily means I’m halfway recovered.)
I don’t know exactly how long full recovery will take. But, I have a gut feeling that I’ll get there. Time will be the ultimate test. In 1-2 years, am I fully recovered? In five years, am I still in remission?
I don’t even know what it feels like to have stable energy, but I’m certain it will be worth the wait.
What Else Have I Tried?
The 16-year list is too long and detailed to include here, but here’s a representative summary:
• Increased sleep and/or total rest
• Excellent nutrition plus gentle exercise (including yoga, Qi Gong)
• Intense exercise (phased, progressive triathlon training with extra, built-in rest)
• Massage therapies (many kinds)
• Breath therapy and meditation
• Dietary changes and restrictions (many)
• Chiropractic care
• Hyperbaric oxygen therapy
• Hypoxic therapy
• Symptom-specific treatments for G.I. problems, psoriasis, anxiety, and depression - including many medications and supplements, prescription and herbal.
• Multiple natural or herbal supplements for energy and hormone balance
• Various “detox” therapies
• Energy healing
• Cymbalta (a newer anti-depressant that also dulls perception of pain and good sensation)
• Ayuverdic therapy
• Dead sea salts
• Hypnosis or “guided imagery”
• Cognitive-behavioral therapy
...And to continue doing triathlons with a progressively weaker body, I used sleep, great nutrition, massage, trigger point therapy, functional strength training, tons of stretching, contrast baths, and sleep aids…until I could no longer put one leg in front of the other.
None of these things brought me relief from the chronic fatigue for more than a matter of hours. The illness continued progressing like a slow-moving locomotive, no matter what I did or didn’t do.
I will attest that good nutrition, moderate massage, exercise, and frequent use of advanced stretching techniques are critical in the recovery process, and very useful in daily life. I heartily recommend all of these.
Want More Information, or Need Help?
If you’re experiencing symptoms like I’ve described, or you know someone who is, please feel free to reach out to me. I am dumbfounded that so few people know about Dr. St. Amand. I’ve personally met other women with fibromyalgia or chronic fatigue. The luckiest ones are managing symptoms somewhat, but still have cyclic fatigue and pain. Many just suffer, and still others are so debilitated that we don’t see them at all. I’m only happy to share what I’ve learned, and hopefully minimize others’ suffering.
I strongly encourage anyone struggling with the symptoms described here to get assessed by a doctor trained in Dr. St. Amand’s diagnostic protocol. If you can visit Dr. St. Amand in Marina Del Rey, CA, DO IT. Do not wait. You may not have fibromyalgia, but what does it hurt to find out? If you do, you have a viable option for turning your life back around.
To find a doctor in your area who works with Dr. St. Amand’s protocols, contact the Fibromyalgia Treatment Center.