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!
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