Sign in

Tags


Blogroll


Resources to Work on Book

Posted on December 9, 2013 12:10 by dlovejoy

Mind Power and Cough Medicine: How I Won the Fibromyalgia War

(...or something like that).

I'm raising funds to publish! To learn more or donate: http://www.gofundme.com/5lss0o

No amount is too small -- the beauty of crowd-funding is that everyone wins. I have enjoyed contributing to others' causes; and it doesn't take much.

After 15 years of major illness, I finally got an diagnosis and treatment...and it's working. And now we have Kale, our miracle baby after 8 miscarriages pre-treatment. The treatment is the Guaifenesin Protocol, the only method that actually reverses syptoms over time.

Sadly, our medical system lets fibromyalgia sufferers FALL THROUGH THE CRACKS. Please help me get the message out, that you CAN GET BETTER. You don't need to be on pain meds for the rest of your life! (And pain meds like Lyrica are reported to help less than 1/3 of fibro patients.) 

See my other blog entries for more about my story! 

 

 


Winning the Fibro War

Posted on December 4, 2013 01:10 by dlovejoy

I've written at least 25 blog entries in my head over the last year. But, having a toddler, maintaining a household, and being my own physical therapist and Chronic Illness Recovery Manager consumes a lot of time I would otherwise spend writing.

I have been chipping away at my book about my fibromyalgia recovery process...yet financial and familial stressors are pressing me to seek paid work.

Since my last entry, I reached a no-turn-back point with the fibromyalgia and the Guaifenesin Protocol. Having had fatigue and pain for so many years had taken its toll on me, and on my husband. And here was my beautiful son Kale, growing so quickly and giving me a run for my (limited) energy.

 

With my husband feeling chronically deprived as well, and a lack of income on my part, the only solution I could see by spring of 2013 was to try to accelerate my path to full wellness. So I gradually quadrupled my Guaifenesin dose. This meant a proportionate increase in pain and fatigue. I didn't expect such an intense surge of depression as well, but it made sense, as that's also a fibromyalgia symptom.

The resulting increase in pain was mind-blowing. A high pain threshold runs in my family; so it takes a high level of pain to break through. My whole back line was on fire. Various body parts were disabled for periods of time, as painful and weak as a severe sprain. A thumb was out of commission for a month; an elbow for two months; my forearms on and off (tricky when caring for a baby); a shoulder, a hip, a foot or both feet, and so on. 

There was a very dark moment where I didn't want to live anymore. To be brutally honest, if not for Kale, I might not be here.

Thank the powers that be that I didn't give up. Not being the giving-up type, I confided in Greg, and then ran to additional doctors to round up the extra support I needed: more Lexapro (yes, it really helped!), and prescriptions of up to 7.5 mg. Vicodin, and various sleep medication to try. (I've been using a crumb of Xanax to sleep for many years; and so far, it's still the only thing that knocks me out at night.)

(Topic of another whole blog entry: I've been repeatedly disappointed -- to say it lightly -- in our healthcare system, and in the doctors who are more concerned with covering their legal a**es than in really listening to, and helping, a patient in need. Thank god for the few doctors who have listened; they are why I'm currently reversing my fibromyalgia symptoms, rather than becoming more disabled.)

...And Kale. Since I couldn't get out of bed in the mornings (nighttime insomnia with morning fatigue are common with fibro), we hired a part-time nanny to help out. No, we couldn't really afford it; we borrowed against the house. We have no local family to help out; and my dad and sister are also ill. But, when it comes literally to matters of life and a much-wanted baby, you do what you have to do.

I told the nannies that I couldn't talk in the mornings, until I'd sat for several minutes and eaten something. Even then I could barely form a sentence. Naturally gifted with languages, I was reduced to stuttering, searching for basic vocabulary and often substituting "the...thing" in desperation.

I think the brain fog might be the worst symptom. In combination with crushing fatigue and weakness, it's lethal. On crash days or weeks, I'd lie in bed unable to open or focus my eyes. I just waited, hours...days...for the weakness to lift a little so I could get up and do some things. Slowly, over time, the crashes have become less intense on average. Sometimes now I can even exercise lightly on such days!

Some patients, especially older ones, think that memory is the brain issue. It's easy to chalk up the slowing of mind and body to age. But there's nothing normal about the degree of the problem in fibromyalgia. If you can't cognitively process realtime, then nor can you remember. And so, both go out the window, along with your verbal acuity. For awhile, I couldn't keep a thread in mind long enough to write it. But writing ability returned first, because with writing, you go at your own pace.

While the fatigue has been debilitating enough, it's the brain fog that prevented me from working at all in the last year. If your brain is offline, but you have physical strength, then you can work. If you can think but you're weak or paralyzed, then you can still do something. But with both gone, there's only lying in bed, staring at the big tree out the window when your eyelid muscles aren't too fatigued to stay open, wondering vaguely what the people are doing on the sidewalk below, and how they can talk so energetically. And you try not to sink into despair as you lie there and miss out, hour after hour, day after day, year after year. You watch your own despair, and hope that there's a life beyond it.

I feel fortunate in a way that I was born with athletic, musical and cognitive abilities. My body could be like a race car, in endurance sports. I learned early to soothe my as-yet-unnamed anxiety with repetitive motion. Total submersion in water was best.

But if you put sand in the engine of a Ferrari, it won't run. Fibro is like a black, course-grained sand running throughout the body's systems. I hope that someday I can play the piano and even hand-write again. For the last several years,  my hands have felt 200 years old.

The words "mollusk" and "despairing" don't begin to cover it. Add up months and years, of missed opportunity, the stress of unrelenting suffering. I always did my best, found the things I could do, even if I couldn't do a through x.

By no means am I fully free of the brain fog. But, my brain now works about like an average brain would. I know from memory that my brain can be pretty sharp in some areas, so in comparison it's still disappointing sometimes. But, it's HUGE that I'm writing this right now, while on 6400 mg./day of Guaifenesin. And with each month comes palpable improvement.

You never know when a "crash" will hit. Recovery through Guaifenesin mirrors your progression into illness, but at very high speed. So you might still "crash" periodically until you're fairly clear. Fibromyalgia is a genetic, progressive illness. If left untreated, or treated simply with pain-dulling medications, it gradually takes over all bodily function, including that of the organs. In no actual universe is fibromyalgia just a "pain syndrome." That many doctors and researchers neglect the major malfunctions of energy production, digestion, circulation, cognition, even skin and hair quality, is an egregious and damaging oversight.

If I had $1000 for each doctor who misdiagnosed me over the last 20+ years, missing the fibromyalgia altogether...I would have no financial worries. And I would give everything I own to have a few of those years back, knowing the work of Dr. R. Paul St. Amand.

The soft-tissue pain is anywhere and everywhere, in a barely-predictable pattern. Muscles behind your ribs, behind your eyes, around your organs hurt. Things that you never thought about make themselves known. Your ears ring, and sometimes (if not always) it feels like labor contractions to take a dump.

Long story short, excess phosphate buildup = fluid deposits in muscle tissue, in a consistent, predictable pattern. Dr. St. Amand monitors these deposits as they break up and disappear over time. After the last fluid deposit is gone from the neck, there might still be time required to clear tendons and ligaments.

Guaifenesin enables the kidneys' to expel phosphate at a normal rate. That's it. Theoretically, it's just a genetic kidney defect. But as we know with many medical conditions, a slight imbalance growing over time becomes a LARGE problem.

Here are my fluid deposit "maps" from May 2011 and October 2013. I've been mapped 13 times. Each map represents how many fluid deposits remain in the muscle tissue, as a result of excess phosphate buildup.

NOTE the crescent-shaped fluid deposit to the right of my elbow bone. (X-ray done because of suspected fracture. No bone breaks, but some proof of the weird fluid problem!) The orthopedic doctor and radiologist were flummoxed! They'd never heard of Dr. St. Amand's work, and weren't really interested in hearing about it.

From March through June, I couldn't speak sensically, exercise consistently, or climb the stairs without panting like a horse. But in June and July I got up before 11:30 A.M. some days. I started getting to sleep at 1:00 or 2:00 intsead of 3:00 A.M.

I started taking Kale to swim lessons, and arranging play dates. It was just, Take care of self, give Kale a good life, try to connect with Greg. Greg was suffering quietly, unable to communicate effectively to me about it. His behavior was becoming more erratic, his energy more manic. I worried about depression in him as well. He'd crashed with colitis in early spring; I delayed my dose increase to take care of him as he missed a whole month of work and dad duties.

By September I was exercising consistently, instead of crashing every other week. My riding grew stronger, the hills steeper. I started to see quad muscles. I could close my grip with both hands!

In November I had some nights where I SLEPT FOR 8 HOURS STRAIGHT. Fellow fibro people may know that this is like the second coming. Either body aches, bladder, or brain wakes you at will, increasing your crushing fatigue, if that's possible. (One night in the spring I got up to pee, and my legs collapsed as I fell in a heap, pangs of weakness shooting from hips to feet.)

Now only parts of my back or neck hurt at one time. My hips, elbows, back, and neck are actively clearing (you can feel it for sure with a high dose). Some weekends, I can ride my bike for three hours through the east county hills. Sometimes I take Vicodin for a long ride, so I can tolerate extreme back and hip tension. But it's lightening up.

My right pinkie toe and perineus are starting to un-freeze, after 12+ years. Will I be able to un-furrow my brow, with no chronic tension or pain to tie it in subtle knots?

For months I required Vicodin to jog at all. Now I'm running 6 miles "sober." As my scapular system starts to release and the pain slowly subsides, I prepare to get back in the water -- a goal for 2014.

As we approach New Year's 2013, I feel...thankful. I'm still grieving the lost self and gone time; but there's a forward view now. Each day I'm a little closer to being truly OK. I mean, I am OK, and I'm more than OK as a mom. Somehow I always find endless love for Kale, no matter how difficult a day is.

 

 

Greg, in the meantime, melted down in the fall. Years of cumulative stress on his uniquely weak system finally caused an implosion of sorts. He has been unhappy, and we fear for our relationship; but that's another blog entry.

Yet I'm grateful for Greg, and endlessly so for Kale. And I'm ridiculously grateful for the work of Dr. St. Amand, which means that many of us can have potential lives. I regularly follow the ListServ group that's moderated by Dr. St. Amand's office -- stories from Guaifenesin Protocol beginners, and so many progress reports from people who are out of bed and living life again. I got in touch with a few fellow athletes, one of whom just completed her first marathon. I hope to follow in her shoes, and pave the path for many others!

And, thank god for my bike, and my ability to do low-impact exercise (albeit in pain) throughout much of this process.

 

P.S. I realized today that I'm able to sit for a few hours at a time now, without Vicodin. There are pangs in my hips, quads, an ache in my back, legs, and neck, and tiny muscle spasms everywhere; but this is peanuts compared to a few months ago!

 

 


NYE 2012: The Good and Bad

Posted on December 31, 2012 23:30 by dlovejoy

The best thing I could've imagined has become a reality...and it's even better, in some ways, than I'd imagined. Kale Thomas has been with us for 3 1/2 months. When I sing him to sleep, I tell him how long we waited for him, and how amazed and delighted we are to have him. It sounds so simple and natural...but after eight losses in a row and a 16-year war with a chronic illness, holding his little warm body and seeing his smile grow by the week is a dream.

At the same time, I continue to slog through my own personal h*ll...(yeah, a very steep "hill"). I have made astounding improvement in my fibromyalgia recovery, thanks to Dr. St. Amand's Guaifenesin Protocol. (--And thanks to Dr. Stephen Eisenberg, the hematologist/oncologist who referred me to Dr. St. Amand, thereby changing the course of my life.)

1 1/2 years into treatment, my major illness symptoms are still GONE, a distant memory now. --No I.B.S., hormone imbalance, major anxiety, body-engulfing psoriasis, monster headaches, low blood pressure and freezing-cold body temperatures.

The catch is, I'm only halfway there, if that. My original estimate for total recovery was three years -- and that didn't account for some regression with pregnancy and childbirth.

I continue to feel cyclic pain and fatigue. The especially difficult part is that one never knows when a fibromyalgia crash will hit. I get a few hours' warning via intense pain in my sacrum (low back), but by then I can barely prepare for the flu-like fatigue that threatens to pin the body and brain to the floor for hours or days. The great news is that in between, my days are better and better - ever-so-gradually approaching those of someone with "normal" energy.

According to the theory (which makes intuitive bodily sense to me), the fatigue crashes happen when excess phosphate is moved in OR out of soft tissue cells. As fibromyalgia worsens over time, increasing amounts of phosphate are stuffed away, causing mind-boggling cellular stress and pain. It's cyclic for awhile, but the pain and cellular stress gradually become more constant over time.

During recovery, Guaifenesin frees phosphate from the soft tissue cells, in cyclic surges. The phosphate is released more quickly and in larger amounts than when it went in, causing intense pain and fatigue, in rapid cycles. In two months, I cycle through approximately a year's worth of fatigue and pain symptoms. Some areas clear entirely in one long cycle - for example, the pain and weakness in my forearm tendons disappeared forever after two months of searing, shooting pains. Other areas (like the back muscles) require multiple cycles, over many months.

Now, instead of spiraling insidiously toward a major, chronic state of debilitation, I'm spiraling upward, backward in time to a moment of physical balance and strength. Possibly, I will feel better than I ever have. 

My crashes also had become less intense, pre-pregnancy...but major hormone shifts plus an emergency C-section have made their impact in recent months.

I feel certain that two years ago, I couldn't have begun to recover from childbirth + surgery. Now, it's happening - maybe slowly, but the progress is there.

So I sit on New Year's Eve, fondly reviewing the past week's gatherings with friends, plus Kale's recent meetings with all of his grandparents. At the same time, I'm achy, bone-fatigued and lonely, and working to focus on the better days that will come next, like they always do now. I could barely stay out of bed today, but here I am; and this crash too, will pass. That's the hardest thing to remember, in the thick of it.

My wish now is that I'm 100% recovered by the time Kale is old enough to be aware and begin remembering what his mom was like, and how much she was there for him. Sooner is even better.


14-Month Fibromyalgia Update

Posted on August 13, 2012 15:59 by dlovejoy

Expecting a Baby Boy in October!... 

 

Late last fall, I wrote about the beginnings of my recovery from many years of debilitating fibromyalgia symptoms. The specialist who diagnosed and periodically assesses me is now 85, but actively continues his 50+ years of research and patient treatment. Dr. R. Paul St. Amand, a Los Angeles endocrinologist who has fibromyalgia himself, completely reversed his symptoms, and those of his children. He does the same for thousands of patients.

 

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.

 

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 early last year. My own dramatic recovery continues.

 

My chosen treatment is Dr. St. Amand’s Guaifenesin Protocol, a regular dose of over-the-counter guaifenesin, which in fibromyalgic patients replaces a missing kidney enzyme, and gradually restores phosphate balance in the body. The original article (LINK) explains Dr. St. Amand’s theory and treatment protocol in detail.

 

At 28 weeks (3 weeks ago)

Further Improvement Since October 2011

At the time of my first article from last October, I’d already experienced partial relief from:

 

·         24/7, monster headaches

·         Facial and hand puffiness

·         Digestion – bloating was reduced, and I could eat small amounts of gluten and dairy without I.B.S.

·         Shortness of breath

·         Pelvic cramping and pain

·         Knee and left thigh pain

·         Aches and pains in the shoulders, back, neck, and hips

·         Extremely low body temperature, blood pressure, and progesterone level

·         Frequent foot cramping during walking or jogging

·         Intermittent depression and anxiety

·         Arthritis symptoms in hands

However, as I periodically increased my Guaifenesin dose to further speed recovery (at the Doctor’s recommendation), I experienced new waves of heavy fatigue and “brain fog” as the excess phosphate was forced out of my soft tissue, in cycles.

Here’s where I was by January of 2012:


·         Facial and hand puffiness were GONE except during vigorous exercise (hands)

·         Digestive bloating was GONE, and I was able to eat anything I needed or desired

·         Shortness of breath was gone during my “up” cycles, to return briefly during fatigue cycles

·         Pelvic cramping and pain had moved from major and frequent to minor and infrequent

·         Knee and left thigh pain was GONE

·         Aches and pains in the shoulders, back, and hips only occurred during brief fatigue cycles

·         Intermittent depression and anxiety was minimal and occurred only 1-2 days at a time

·         Body temperature remained consistently NORMAL (97.5-98.6 degrees) for the first time in my life

·         Arthritis symptoms in hands were GONE, and internal muscle tightness in hands and forearms is greatly reduced

·         I was running regularly again, even with a little speed work!

·         Foot cramps occurred only in occasional cycles

·         I’d had five totally normal monthly cycles in a row, with no assistance from medications or treatments!



This summer, the muscles in my neck and head are cycling through the phosphate-clearing process. It’s periodically painful and exhausting, but each period of fatigue brings improvement. This type of clearing means I’m probably in the second half of my complete recovery process.

My Dosage and Rate of Progress

In May of 2011 I started with 600 mg/day of pure Guaifenesin. Over the next several months, I increased to 1200, 1500, 1800, 2100, and 2400, with a surge of increased fatigue each time. But, after a few weeks I adjusted to each dose, and felt a sudden, new surge of energy. By December of 2011, I started to have some really decent days for the first time in years, and the fatigue cycles had gone from 5-7 days, to 2 days.


In January 2012 Greg and I finally took a long-awaited vacation, an ambitious trip to the French West Indies. We flew 14 hours each direction, and I slept (with the aid of inflatable pillows) in a small, not-so-comfortable bed for 10 days (previously not possible, due to body aches and pains).


Even with travel fatigue, I woke up and enjoyed doing fun things all day, eight out of 10 days. We hiked three hours with a steep, windy finish to the highest peak on the island. I swam in the ocean with minimal shoulder pain. And, I enjoyed the delicious, local cheeses and ice creams without digestive distress. I experienced some brain “cycling” in the form of mild anxiety, but managed it fairly easily, knowing in a few days it would cease again. By this time, I could observe objectively what my body and brain were doing, without feeling so helpless about it.

…And a Pregnancy Breakthrough!

I brought home more than good memories and cute pictures of Greg from the island of Guadeloupe. I’d refreshed my French language skills a bit…and we found out I was pregnant. With my history of miscarriage (due to the fibromyalgia symptoms), we took it one day at a time, and remained cautiously hopeful.


The previous pregnancies were marked with painful cramping, extreme dizziness, increased bodily fatigue and pain, spotting or bleeding, and finally loss. We never had a truly “good” ultrasound, never got to hear a heartbeat.


This time, at 7 ½ weeks the perfect, strong heartbeat was gloriously deafening! At first I couldn’t see the ultrasound screen through tears of relief and happiness. Now I am 31 weeks, and we’ve only seen good signs of baby growth.


Pregnancy symptoms have partly obscured my perception of overall recovery progress. For 4 months, I had severe nausea. Since that faded, I’ve continued cycling with fibromyalgia fatigue, as excess phosphate clears from my soft tissue. Even so, I’ve still been able to exercise moderately.


My fibromyalgia recovery will probably continue for a year after our baby arrives. But, I’m no longer afraid that I can’t care for a child to the best of my ability. I have nowhere to go but UP.

There’s no real mystery to me. My body and my hormones had reached a different place, one of natural balance. The rest...is just happening. Greg and I are so excited we could burst. Yet, pregnancy also feels like the most natural thing in the world.

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 met other women (and a few men) 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  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.

 

Grandma and Grandpa-to-be...


Fibromyalgia: Cause and Treatment

Posted on October 27, 2011 00:32 by dlovejoy

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)
• Acupuncture
• 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.


Budget Bathroom Update

Posted on July 11, 2011 13:47 by dlovejoy

When our three-year housemate moved out, we realized we needed to re-paint our spare bedroom, for ourselves and for a new housemate...and I jumped on the opportunity to bring our downstairs bathroom into the 21st century.

The floor was already nice, diagonally-installed tile, updated in 1995 to match the downstairs halls and kitchen. I didn't like the shiny, chrome fixtures, and the metal on the vanity lights was eroding and rusting.

I couldn't understand why the original remodelers had put bright, honey-colored wood with blue and burgundy tile; or why the previous owners had painted white on top of blue, and left globs and rivulets of paint near the ceiling and baseboards. They'd also left several areas un-caulked, leaving lovely gaps between vanity and wall, wall and baseboards, and cabinet doors and wood.

The mirror was a piece of unframed glass, mounted with those cheesy plastic clips. (I forgot to take a "before" pic while the old mirror and lights were still up. In this photo, our painter had already done the caulking.)

The bathroom before (fixtures stripped and new caulking already done):

We already had Ward Hardy, the painter, on the job, and we had some leftover wall paint from three years before. I got one additional can of Sherman-Williams "Virtual Taupe" to cover the vanity and wood picture frame, plus a cheap coffee table in our family room (whose paint was chipping and sticking terribly).

First, I'd fallen in love with this driftwood mirror from Pottery Barn. I'd been staring at it for weeks, even before I decided to change the bathroom. I realized it probably wouldn't go on sale for several months, if ever. I shopped for cheaper equivalents, but they weren't the right size, and/or didn't look as natural and pretty.

 

And, after researching how to glue driftwood on the existing glass, I found it was going to be expensive and time-consuming to acquire small, treated driftwood and make it work. So, the PB mirror became the Big Purchase ($200), and I made it the focus with which to coordinate.

Since we were having the wall painted and patched, now was the time to change fixtures. I shopped for pewter-colored fixtures online, and ended up with some great deals on sink fixtures (eBay), towel and T.P. rack (PB clearance), vanity lights, and cabinet knobs. 

The vanity lights required a couple go-arounds, as Home Depot and Lowe's were short on choices -- bronze and nickel are still the trends -- and my first online purchase from CSN Stores ended up being more like brushed nickel than pewter. Back it went; luckily, shipping was free! I ended up buying lights online from ATG stores, after a quick phone consultation with their customer service rep. re: color. I'd found the Seagull lights on eBay, but ATG stores actually had a better price.

I found the cool, swirly knobs at Home Depot online, $14.99 for a pair:

...And the look started to come together! Tafi was our best little helper, the whole time. Oh, he's a verrry good supervisor.

The toilet paper holder is supposed to be a combination T.P./magazine rack. The T.P. mount is a little close to the wall, but of course you can put the roll on the long rack instead. I think this minor defect was why the fixture was $10. Whatever; it's bendable too!

The towel rack, also from PB clearance. It wasn't the same style "family," but I thought it coordinated well. I already had the taupe-colored towels:

The vanity lights wouldn't fit with the mirror with lamps hanging downward, so we mounted it right-side-up. Fortunately it worked, even with the bathroom being somewhat small:

 

The final touch was the recycled-glass soap and lotion bottles (Target, $12 each). I also got two recycled-glass bottle vases from West Elm clearance online, can't remember the exact price, but they were less than $20 total.

The only thing with the fresh grass from our yard is that it's a bit too fascinating - almost lost the sink vase! I may have to get some dune or meadow grass, pre-dried.

 

Nighttime view (before I got the glass vases):

View upon entry:

I put the other recycled glass vase (aqua-colored) in the corner of the tub, visible from the doorway. The curly, dried flora I got for it isn't in yet...I'll have to add a photo!

...And, the money stops there! But I'm very pleased. Huge thanks to - what is the term? "DH?" Greg for drilling and plumbing!


On Marrying a Sick Person

Posted on July 8, 2011 00:59 by dlovejoy

...Of course, Greg couldn't have known I had some weird illness; I didn't really know myself. I worked full-time, had bought my own condo and car, and was doing half-iron triathlons. But I had to take car naps most afternoons just to get by. And I'd always had this mysterious, cyclic fatigue, which persisted no matter how hard or easy I took it. And then my psoriasis symptoms started to get worse - but they didn't really start to explode until just before our wedding.

Obviously, if I'd had any useful input from doctors, research, peers, whatever, sooner -- I would've sought specific help with "fibromyalgia." But as I've mentioned before, I didn't have notable pain until about 2008. Muscle soreness was increasing before then, but then so were my age and my race distances.

So today -- like just about every day of the last two+ years, but today in a more height-of-conciousness way -- I was feeling bummed about being a burden to Greg. Or really, bummed about this debilitating state I seem to have born with through no real fault of my own, but which has tainted everything I've done for the last 16 years. ...And that Greg, being a caring husband, is so affected when I feel like shit. Some days, I feel like shit, others just like crap, and then for weeks on end I felt like the shit streaks that line the bowl for weeks because no-one bothers to clean them. Or maybe like said shit streaks, once they've been flushed down and are festering in a dark stench of sewage. Those days and weeks, it's like having the worst flu ever, plus full-body arthritis, plus a nice dose of (situational or chemical?) depression to top it off.

It's shitty enough that we had eight miscarriages in a row -- all the while testing beautifully clearly on all fertility investigations, and following the advice of "top doctors." And then I never recovered, so the surreally bad dream continues with a new/old slant. And Greg is getting tossed all around the boat with me.

It's week 7 - really week 6 at an effective dose - in my guaifenesin treatment prescribed by Dr. St. Amand of Marina Del Rey. The progress so far is enough to make me start to dream for real about a low-fatigue life. Well, it's not about not being tired sometimes, or even exhausted; but "fibromyalgia" in Dr. St. Amand's definition means you can't recover from activity. As your kidneys, muscles and body tissues get increasingly over-taxed, recovery slows to a halt. What I'm looking for is the ability to work, and then recover, and then work again. I was able to do this in a modified way for several years, but never quite normally, and with plenty of suffering along the way.

Even though my pain has decreased a lot, and I've started to have some halfway-decent days, I'm still waiting to see if my energy will stabilize enough for us to plan a weekend trip. For months it has been like, "Let's try to go hiking this weekend...oh, never mind; I can't stay out of bed. OK, maybe...now! No...how about...now? Quick, let's go!" Basically I've been working with shrinking windows of opportunity, almost my whole adult life.

I think it's part of human nature -- If you're given enough chance and choice, to wonder whether the grass might be greener over there, or to be fooled by overly simple appearances. These people and families all around...they look like they have something you don't - either more resources, or a family, or time, or energy. But it's in the nature of being that you can't have everything all at once, and freedom of choice means continual limitations, a steady stream of paths not taken. And so the curious or un-Buddhist among us continue to wonder, What would it be like if...?

But Greg and I have this very real feeling, like our lives haven't really started yet. We've been fighting uphill for so long in our separate ways; and then in new ways once together. For short periods we've felt like maybe things were finally evening out - but this condition I have doesn't work like that. We don't know if the dysfunctional tightness in my muscles, and the deep, bone-aching fatigue contribued to my miscarriages, but it's very possible. At least, in combination with my over-35 age stamp, it could be enough.

Today I was riding my bike (slowly), and appreciating being able to do so. It allowed my feelings to gel into thoughts a little better, and I let myself sit with that sadness, that burden. If I could grant Greg one thing right now, it would probably be the ability to detach more from my suffering and enjoy himself a little more, at least most of the time. 

Empathetic freedom notwithstanding, I'll keep letting my dream unfold - to get better. I think it might really be happening. I don't think that everything will straighten itself out if/when I have stable energy reserves, but I will have access to many more tools, to make each day a little better, to find more satisfaction, even generate more cash so we can worry less about that.

I'm going to sign off tonight with a list of things I'm grateful and so fortunate for: Greg, my spastic-fantastic kitties, our nice house in coastal Carlsbad (hoping we can fill more of those rooms somewhat soon!), the better days I've been having in the last 1 1/2 weeks, having an appetite, being able to swim again and ride my bike a little more, my sister Lori, my really cool fitness clients, my ability to problem-solve and think creatively, and Doctors Stephen Eisenberg and R. Paul St. Amand, who guided me to the path to relief.

 


"Challenged Athlete"

Posted on June 20, 2011 00:27 by dlovejoy

Sandwiched somewhere in the middle of almost 16 years of major chronic fatigue, I've been a competitive triathlete for 11 years. They say endurance athletes are always running from something; in my case, it was the mysterious fatigue and weakness that seemed to follow me no matter what I did, or how healthy and "moderate" I made my lifestyle.

In the first three years of triathlon, I actually felt better than I had since my first major fatigue "crash" at age 23. And I ran faster and faster. But the Mystery Condition was running too, and it was only a matter of time before it would catch up with me again.

Now I know I have fibromyalgia. I know that my diagnosis and treatment are still considered "experimental" medicine, but the doctor I'm working with pretty much nailed everything on the head. I've been to many, many health practitioners in 16+ years, as well as before that, as mysterious infections and issues (low blood pressure/fainting, unexplained hormone imbalance, colds, flu, random bacterial infections, you-name-it) popped up at will.

During my 11 years of competition so far, I've known all along I had this mysterious fatigue condition. As soon as I thought I was "really" kicking it for good, it would have me on my back again, out of training for days at a time, sometimes in bed with a no-fever "flu" for days. One week, I'd be stronger than hell; the next, so weak I could barely use my body at all. At ifrst I bounced back, just as strong again. I did pretty damned well in a handful of earlier races. But over time, I bounced back less strongly each time. I took stellar care of my body, and trained wisely (can honestly say I under-trained rather than over-trained, partly out of necessity). I did most of my races and events at 70-80%, always feeling deep down that I was capable of much more, if I could just shake that fatigue and weakness.

Of course I tried long rest periods, "easy" training periods, long off-seasons...and sometimes I'd come out of off-season feeling a little fresher. But it never lasted.

Ad photo shoot for Xterra Wetsuits, 2007 -- How could I look so strong, and yet feel so sick?

Finally I had to drop out of a couple of races. Those moments were the worst, worse than the ominous weeks or days before the events where the flu-like syndrome started closing in. I am probably the farthest thing from a "quitter." But there's a point where your body simply fails, and you have to listen before you do damage.

There's an amazing charitable organization, based in San Diego (home of triathlon), called the Challenged Athletes Foundation. Founder and triathlon presence Bob Babbitt (also founder of Competitor Magazine) started it as a support line for people who wanted to compete in endurance sports, despite major, life-altering physical injury or loss -- from individuals who gave up limbs at birth or in childhood, to war veterans.

Bob Babbitt, founder of Competitor Magazine and the Challenged Athletes Foundation

I don't believe anyone who hasn't gone through such an experience (like myself) can really imagine what daily life is like without, say, one or both of your arms or legs. --Let alone completing a triathlon in said state. But, I feel a kind of special empathy for these athletes who overcome daunting obstacles not just to live somewhat "normal" lives, but to live life to the fullest.

I've always felt like a "challenged athlete." I trained and raced for many years in a seriously compromised state. Even on some occasions where I felt OK otherwise I missed placing first in several long-course triathlons due to multiple, disastrous stops in the porta potty. --This was despite every dietary elimination experiment in the book, plus several other types of treatments...with again, no real answers. I made it to short- and long-course world championships on my 70-80% efforts, and then had relatively mediocre performances on the world stage. --All the while knowing I was missing a few gears.

I kept going, and kept trying my best with the 70% I had, because...I'd rather live life, than sit and wait on the sidelines while still, no-one had an answer. In the face of insufficient information, it seemed the only choice.

I've been fairly quiet about my struggles for all these years.

First, no-one really wants to hear chronic complaining (least of all myself).

Second, there were sponsors, who wouldn't take kindly to knowing I was "chronically ill." 

Third, I did *relatively* well in some events, and never wanted to make athletes I was ahead of feel badly.

Fourth, I desperately needed to hold on to the perhaps-overly-optimistic belief that either I was truly getting better; or I'd finally find out what the hell was wrong and how to fix it.

Then, there was also the constant, aching envy. Such an ugly word. --Envy and even resentment of other people, who treated their bodies far from temple-like, and yet could still do 40% more than I could, without paying with days or weeks at a time of horribly depressing down-time.

True, core energy is what I've been missing. I've been blessed with so many things in my life. Yes, I was able to appreciate good things; but chronic pain and fatigue are like an ever-present bell jar (a la Sylvia Plath), dampening much of your experience.

I didn't know precisly what was wrong with me until recently; but I knew unequivocally that something was wrong. It's just that, no doctor had a productive answer, and no treatment effected change or real improvement. Fibromyalgia is progressive; symptoms worsen with time and age. I've just been running and running, and troubleshooting a multitude of seemingly insurmountable health issues along the way...until finally, I couldn't run anymore.

After eight miscarriages (including three surgeries) in a row (also with no explanation despite a plethora of cutting-edge tests), I had my second massive, long-term fatigue crash. ...And at the end of this nightmarish tunnel came some light: Dr. R. Paul St. Amand and his fibromyalgia research. First, there was Dr. Steven Eisenberg, an Escondido hematologist who really listened and watched, felt that I might have FMS, and pointed me to Dr. St. Amand.

And so, while I am not "better" yet, and I'm still in this long, dark tunnel - which must get windier and darker before it can widen and brighten - at least I believe I finally might get relief from the horrible symptoms and debilitating fatigue I've been tolerating for so long.

In the two months since my diagnosis, I've needed to start grieving the loss of so many opportunities, experiences, fun or social events, accomplishments, even potential friendships, small moments of joy, comfort, or satisfaction. First I need to acknowledge how truly hard life has felt for at least the past 16 years. It's possible I've done more than some people do with able bodies in that amount of time; but for someone like me with a curious, creative mind and love of adventure and positive challenge, stting on the couch was never a welcome option. It's like there was this ghost life parallel to my own, Diana's Potential Life That Hasn't Happened - the life I might've been living already if I weren't sick. (This is the first time I've been able to accept that word, "sick," in reference to myself.) I got to be 70% of the athlete I could be; I had maybe 60% of the overall experiences I probably would've had my energy level been "normal." Many of my private moments involved discomfort, pain or exhaustion. I never showed these to others. Even my husband never really knew until recently how truly uncomfortable I'd been all along. It's not so much that I hid it intentially from him; it's perhaps that it was too painful for me to accept.

Now I'm 38, still with no kids but a loving husband who cares so much he sometimes can't show it, feeling like life is over and that it might be just beginning at the same time. Right now in this uncertain moment, I have tremendous hope that my fatigue and pain will eventually lift, because a few symptoms have already begun to clear. What if I could feel "good" in six months, or a year?? "Epic" doesn't begin to describe that possibility.

It's time to go rest now.


Fibromyalgia Treatment Week 4

Posted on June 15, 2011 23:12 by dlovejoy

I'm exactly 3 1/2 weeks into Dr. St. Amand's guaifenesin treatment protocol. It's so early, I haven't even determined the ideal dose (I may have increased too quickly) - and yet, I've already experienced some startlingly positive results.

Current dose is 1500 mg per day, pure guaifenesin tablets - 600 in AM, 900 in PM. It's possible I was supposed to stay at 1200 for 3 weeks first, but I mis-interpreted some of the info. posted by admins to the online list group. I also haven't received Dr. SA's detailed book yet. But, I'm having visit #2 with the doc next week.

My general fatigue is about the same so far. It was slightly worse in week 2, a LOT worse in week 3, but better than baseline this week, so that sort of averages out to "same" so far. It's too early for averages anyway.

Body pain was almost overwhelming in week 2, as I said in my previous post. It's much mellower this week. I'm keeping a detailed, daily symptom log, so I can see patterns over time.

I'll interject here that, in the last two years, it was really difficult to tell which pains or sensations were due to miscarriages, and which to some other underlying cause. Now I haven't miscarried in 6 months, and I'm pretty sure I know which symptoms are which now.

AMAZINGLY, here are the positive changes so far:

  1. My intense, continuous headaches have faded to almost nothing. Seriously, the headaches had become a daily event as of over a year ago, and then developed into a constant state over the last few months. They seem to have been caused by abnormal tightness in all head and neck muscles...radiating up from the base of my skull, up my temples, and sometimes pounding behind my eyes. Now they're almost negligible. Right now I have a mild, front-of-head headache, I believe because my period's due in 1 1/2 days. I expect it to fade in a few days - let's see.

  2. Extremely tender spots in my upper back are less tender. I can tolerate deep pressure on those spots again. One spot just inside my left shoulder blade was particularly intense, swollen and lumpy to the touch. This is one of the two most common points in Dr. SA's diagnostic body map.

  3. I've had no foot cramps for 2 weeks. The foot cramps started occurring late in long runs about 3 years ago. I'd stretch and massage my foot, and then continue. They gradually became more frequent; by April 2011, they were an hourly (or more!) occurrence. One or both feet would seize up several times during any walk or run, no matter how short. My ankles and calves became involved too - sometimes my foot or lower leg just gave out for a moment. Good thing I know PT techniques, and that I have strong, stable core and balance muscles!

  4. My left hip and gluteus medius are not currently throbbing. In the last 9 days, I haven't woken up once due to aching joints or shooting pains in hips or limbs. --A new record!

  5. My right shoulder (old rotator cuff injury) didn't bug me during my last swim -- and I swam (easy) for more than 30 minutes! In the last two years, it has bothered me so much and so often in swimming that I'd dropped to a couple of 25-minute-or-shorter swims per month - just to keep "water feel." This was despite A.R.T., stretching, shoulder stabilization exercises, etc. In fact, about a year ago I'd tried a series of rehab-style shoulder stabilization exercises - and ended up with more pain and injury. Couldn't understand why, at the time! How could my swim-forever "triathlete" shoulders have become so week and sensitive?

Probably, certain symptoms will continue to fade, as others cycle on and off, or temporarily become more intense as they're "cleared." For instance, this week my outer thighs are more tender. Last week, my hamstring connectors were super-achey; but they seem to be mellowing now.

Right now, considering a few minutes of jogging tomorrow, built into a walk...I'll let my body tell me what to do. (I've done almost no running in the last several weeks.) 

 


Could This Dr. Have The Answer?

Posted on June 2, 2011 16:04 by dlovejoy

And so, we are re-routed from the (so-far failed) pregnancy quest to a more fundamental quest for my own health and energy.

In a serendipitous re-scheduling of appointments, I saw a different hematologist, to ask about my continuing fatigue and macrocytic anemia. This doctor really impressed me - and I do not say that often. Not only did he listen and talk with me for quite awhile, but he composes and plays custom songs for his cancer patients, as part of their treatment.

He thought, after considering my history and doing a quick assessment, that I should see a top fibromyalgia specialist he knew of. And then he personally called this specialist and helped me set up an appointment for the very next week.

So I went to L.A. to see Dr. R. Paul St. Amand. I'd read about him years before in my quest for info. about my cyclic fatigue, but at the time didn't consider fibromyalgia seriously, as I didn't have joint or muscle pain at the time, even though I was regularly doing triathlons.

Dr. St. Amand diagnosed me unequivocally with fibromyalgia (FMS). I fit Dr. St. Amand's "athlete with fibromyalgia" picture perfectly. He has had several thousand patients, and says that a small percentage are athletes like myself. Our problem is, we have high pain tolerance -- so we don't recognize there's a *real* problem until perhaps later. But, with a high fitness level and lots of extra mitochondria, we apparently can get better more quickly too.

My session with Dr. St. Amand was epic for me. Literally every detail of what he said rang true for me, and painted my whole family's story quite clearly. He believes (after many years of research) that FMS is genetic; men are usually carriers, and women show more symptoms. Its source is a genetic metabolic defect wherein the kidneys don't properly flush excess phosphates from the body. The phosphates get stored in the wrong components of cells, and pile up in the facsia (muscles and joints), causing stiffness and pain. First the whole body gets tired, as it overworks to correct this; and it succeeds temporarily. But it always gets bogged down again - hence the cyclic fatigue. Over time, the phosphate build-up increases. They draw calcium from the bones (b/c they need something positively charged to bind to) - which means osteolytis or osteoporosis, if the FMS is not treated.

Best of all, Dr. SA has a treatment...which has worked for himself, his associate, their kids, and thousands of his patients so far.

So about 2 1/2 weeks into a new naturopathic treatment protocol (which just didn't have me sold), I dropped everything and started Dr. SA's treatment. He found that pure guaifenesin corrects the defective kidney process, and over time reverses the symtpoms of FMS. The catch is you have to avoid all products containing salicylates (plant matter) - that's a lot of products. That includes gardening; you must wear protective gloves and clothing. You can eat fruits and vegetables in normal quantities; that's it. This involves a lot of label-reading and toiletry-checking. I've rehauled my whole routine (which, thankfully, wasn't too involved to begin with).

You start with a small dose, and increase until you feel worse. Lots worse. Some people feel worse for a few weeks; others for a few months. But then you start to feel better. Your fatigue cycles start going back in the other direction - a little more energy each time, until you finally reach remission, where you feel "normal."

Week 1, I noticed a feeling of increased relaxation, with better sleep. I also lost some of that puffy, continual water-retention thing I've had for a few months. (Dr. SA believes that you retain extra fluids as the phosphate level gets especially excessive.) Week 2, I feel noticeably worse - more fatigue, more weird muscle pain, etc. (insert long list of weird symptoms here). This is the epic part, though: If this thing works, I could live my life without the nagging fatigue I've dealt with for 15 years. It's hard for me to envision, actually, not feeling tired all the time...just popping out of bed again? Choosing what I want to do and when? As far as I'm concerned, true, core energy is the most precious commodity, and I want it back!