PRIV MAIL ME - REG: 07/2000
Ianna F (pas)
Born: 1961 - FM Since: 1973
Heigt/Wt: 5' 0" 113 - Guai No Help
Pal-Preferences: People who have a style of writing clearly, briefly and to-the-point (since my fibrofog prevents heavy concentration)
ACNE ALRG BRAI BRES CALC CHEE CHEM CRAK DEPR EAR-D EY-D EY-S FATG GERD GH GYM GYNO HED HSP IBS-C L-BP LAR MENS MORT MOU-DR MOU-TA NAZL OTHR R.A. SAR SORS SPURS TMP-I TNDR TOE XTR-C XTR-S XTR-TW URIN YAW
Ianna's "HEAD TO TOE" Symptoms and/or Therapies Tried
HEAD/BRAIN: Due to poor blood flow to my head, migraine prone/ fatigue (urge to constantly yawn); cognitive impairment; urge to lay head down; since childhood, difficulty falling asleep; poor-quality sleep; dizziness & headaches when stressed; any alcohol-based stuff (e.g. Lysol, perfume) gives migraine headaches; car-gasoline nausea since child; inalert, vague memory for facts, chronology; I can barely "visualize" memories the way I could as a child
EYES: Sensitive to light/ water/ wind (my eyes tear in the cold, and I get a migraine from fluorescent lighting and from viewing bright computer screen for lengthy period); Atchoo Syndrome (bright sun triggers sneeze)
NOSE: Sinus-prone (nasal drip when eating hot /pungent food or when cold & windy); since childhood, when I have a sinus-cold it feels like a knife if I even *whisper*. Especially: the "N" or "M" sounds, forcing me to whisper "D" (instead of N) and "B" (instead of M). I detect different smells than other people do; delayed-reaction sneezing
EARS: Hear input diffrently than others do (i.e. I can discern when people are coming up front walkway, yet I often can't comprehend peoples' conversations.)
TONGUE: perpetual white-fuzz on it (dry mouth - probably related to hypercalcemia); supertaster (kiwi/pineapple, acid, lemon, peppermint, pepper = sores), heat-sensitive
THROAT: Prone to getting "frog" (& urge to clear throat); eating raw garlic CAUSES me to get bad cold & sore throat; as does Friendship garlic sourcream & Mint jelly (probly due to mint-oil); also BarBQ/taco-chips causes raw-feeling
VOICE BOX: Weak, dry, raspy, no substance (singing confined within two octaves at risk of sore throat). My voice/diction misrepresents me, causing me extreme frustration & confusion. Sometimes people accuse me "Can you *please* lower your voice? you're shouting!", while other times people demand "speak up! I can't hear you clearly."
ESOPHAGUS: Inability to expel a burp (causing difficulty in conversing during meals & difficulty eating soup quickly) as the burp gets stuck "in there somewhere"; cannot vomit.
LIVER: I've had progressively higher bilirubin since I was young. I'm presently jaundiced.
MUSCLES: Tendency to Sarcopenia (ratio of fat/muscle in body cell mass); tender points; (concentrated fat such as pizza, chocolate, ice cream, etc. aggravates pain, by further blocking my blood flow); cheek muscle pain upon sustained smiling; wrists/arms hurt at sustained writing/typing; pain in inner thigh joints, thighs, shoulders. As child: inability to throw ball far; inability to stand on my head; as child thighs would ache when riding bike uphill, or when someone would sit on tender spot of my lap.
STOMACH: I.B.S., constipation since childhood, prolonged daily fear/stress from embarrassing stomach noises since teens which once drove me to flee classroom in desperation, painful periods, (every so often, I have "darker" heavy bleeding for days between periods, & urethral bleeding plus soreness. I've discovered that Bing cherries & a herpes/ulcer diet sometimes controls the bleeding). I'm intolerant of so many foods, such as beans, peas, cooked-carrots, oniony-salads or peppery-salads, citrus, peppermint (causes acid reflux & sore tongue; also has "bitter aftertaste"; however, peppermint-creme is O.K.), lactose (sometimes, when combined with other foods, they're tolerable, or else, things are more tolerable when warmed, or else, for example I can tolerate vanilla ice cream more than chocolate ice cream, but HOT chocolate drinks go down better; also chocolate helps my constipation, even while it aggravates/triggers my bleeding; I can tolerate cereal&milk more than plain milk, or WARM milk more than cold milk. I can tolerate citrus better, if it's in cream/yogurt etc., but by itself it causes sour stomach; RED WINE IS LETHAL! (causes me to double over in pain for days); Combo's of starch + acid, such as peach twizzlers, or herring & crackers, or Pasta/potato salads made w/vinegar causes an awful-tasting reaction in my mouth; however, if starchy salads are made with MAYO rather than vinegar, it's O.K.; The following is good for me: whole-grain bread/pita preferably toasted, Bitter greens, spinach, beet-root juice, soothing stuff such as sauteed buckwheat & sourcream-cottage combo, banana, rice, chicken soup, liver, fish, fish-gel, chicken/cole-slaw, licorice-tea, even berry, peach or spearmint tea; with cake it's not advisable for me to take citrus drinks
BLADDER: Through my twenties, I'd urinate in direct proportion to the liquid I'd drink (perhaps due to insufficient spongy cartilage, which absorbs liquid & "buffers" joints); Lately, however, I tend to bladder inflammation, & urinating only small quantities at a time (w/burning sensation) despite bladder feeling full; also for the past decade or so I'd bleed from urethra.
BREASTS: Tender when pressure placed on them
JOINTS: snap, crackle, pop; knuckly fingers; prominent knee-caps; as child, unable to sit on floor EXCEPT yoga-fashion; inability to touch toes w/o bending knees; inability to VOLUNTARILY crack knuckles; swiveling neck feels like "creaky ball-bearing"; all the forementioned probably caused by calcium buildup
BONES: I never broke any bones in my life despite VERY hard falls (hinting at high bone density). Yet, in 1999 my blood calcium was close to 10 and my PTH was 18 indicating hypercalcemia.
BLOOD: Poor blood flow & low extracellular water, (associated with low growth hormone & Sarcopenia), aggravated, perhaps, by my jaundice (mosquito's avoid me, though they did find my blood tasty during childhood!) The poor blood flow causes pain (see Dr.Bennett & also Dr.P. Rowe, Johns Hopkins); I suspect it plays a big part in causing my: Cold extremities, nasal drip, hypersensitive nerves, headaches, fatigue, urge to yawn.
BLADDER: Lately, I'm prone to bladder infection; However, during my teens & twenties, I'd urinate in direct proportion to amount of liquid drunk. WHY? I probably lack water retention due to lack of spongy tissue.
HANDS: Often icy; palms very dry
FINGERTIPS: lack of adequate cushioning (when pressing on pointy things) - perhaps due to buildup of calcium?
KNEE-CAPS: lack of adquate cushioning - perhaps due to buildup of calcium?
FEET: Icy, Dry & flaky
HEELS/SOLES: lack of adequate cushioning - perhaps due to buildup of calcium?
TOES: In cold weather, toes swell & turn red/purple & sore, especially after being stuffed in shoes outside; therapy: alternately soaking feet in warm/cool/warm/cool water; rub in vaseline; then dip feet again in pail to rid excess goo; then warm sox
THERAPIES I'VE TRIED:
Carisoprodol (Soma) was one of the med's that worked best for me (I take it now occasionally), though a side-effect is stomach bloating & constipation. Note that there's alot of popular med's I never did try yet. Two pills per shot of Soma worked to relax and detach me without dry mouth or grogginess.
Ibuprofen caplets is the other med that's good for me, specifically, when I get menstrual cramps, & even bleeding. No side effects at all.
Xanax also helped relax me but caused dry mouth.
Ambien did not relax me, rather caused grogginess & "ughy".
Flexeril just left me feeling dried out & listless.
Guaifenesin, a recent therapy, was a flop (though I do believe calcium is causing my problems). What I don't believe is that everyone is physiologically capable of being helped by Guai. I think they should compare the groups of people who aren't helped with the ones who are; then maybe they'd discover some physiological common denominators which could explain the reason people are/not helped. I went on it strictly for a month, even raising the dose to 2400 mg. but felt no cycling. And I found the salicylate-free regimen restrictive, & the constant need to fill prescriptions a pain. I felt it was just another in a long string of stuff which didn't help me.
Acupuncture - 10 years ago, I'd tried acupuncture due to pain in my inner-thigh joints; but I made the mistake of flexing my foot while the pins were inside to try & warm my feet. That caused excruciating pain to travel up the back of my leg to my thigh & I left his office limping, unable to straighten my knee. For a couple days afterward I suffered leg spasms at night, keeping me awake, and to this day my legs are weak. (then again, I remember my legs hurting as a child when pumping uphill).
Massage, infrared massage at kineseologist, ultrasound etc. - Years ago I'd tried biofeedback, hypnosis & ultrasound (a joke) and also not one, but two recommended expert massage therapists, one male, one female. But when they massaged my tender areas I yelled such bloody murder that they were scared. I'd also once seen a combo nutritionist homeopathist chiropractor who did not help. Though there was once a doctor who did cranio-sacral around the back of my [creaky] neck; that felt pleasant (except that wasn't my real tender area). Just this year (2002) I had infrared massage done, to no effect, at a kineseologist (who, by the way, showed me via graph that my parasympathetic & sympathetic nervous system is imbalanced, and also said that I'm allergic to calcium, egg mix, calcium, my own DNA, have metal toxicity, and poor-structure in feet).
Medical Intuitive - (this year, 2002) said that for a very long time, my hyperactive nervous system has stressed out my body, so that by now I'm worn out (I'm only age 41) and compared it to 130 watts shooting through a 120 watt bulb.
Here's the names of other things I tried throughout the years, but that never had any therapeutic effect on me [if at all]: B vitamins, B12 injections, Chelated Magnesium, Body Support with Calcium, Gingko/Ginseng extract, NiteNite (with valerian), niacinimide, lecithin, cod liver oil, Colon Care, homeopathy (nosode, digestion, gentle drainage, milk thistle), chromium, dolobid, orudis, tolectin, magnetic "bandage" around wrist overnite, synthroid, Bel-tone arm brace, elavil, desyrel, trilafon, buspar, meprobomate, Prozac, Melatone, DHEA injection (high dose), Unisom (all unisom caused was dry mouth & awful feeling).
In 1998 I went through a 3-hour growth hormone stim. test to check for growth hormone deficiency. My G.H. level was 1.9, at age 37. My IGF-1 ranged between 209-236. And my calcium levels 10.4. And bilirubin 1.6. I had a complete blood chemistry done by endocrinologist. My growth hormone levels were low at 1.9 for age 37. So I was given the g.h. stim test, involving fasting for 10-12 hours, then taking a generic LaraDopa 500mg pill costing $2, then a series of 3-4 blood tests every 1/2-1 hour. But I wasn't enough of a "basket case" to qualify for official coverage (requiring l-Dopa response of less than 5).
Ianna's Other Symtoms/Non-FM-Experiences/Comments/interests/Food Preferences
never able to sit legs straight out. ONLY yoga style. Childhood constipation. Poor saliva - slow eating. Eat soup slowly, due to reflux/inability to burp. Supertaster. Dry hair. Heavy bleeding/soreness between periods (cherries helps). Stomach noises & cracking joints since teens. Achoo Syndrome. Bad luck/timing badly stressed, as did slow memory and brain's delayed (& inability) registering others' conversations. Others say "speak up! can't hear you" OR "lower your voice!" Jaundiced (progressive since childhood; as child, mosquitos liked me. Not now. I have intense curiosity. Such as what % of FMers are supertasters, or have creaky joints or painful cheeks? Funny thing - I took the supertaster test (blue food coloring on tongue) & sure enough I'm a supertaster. YET, I always loved spinach & broccoli! Not coffee, or bitter chocolate, though, nor saccharin, alcohol, grapefruit, peppermint, or even some cherry products. Re: musical taste? I prefer soft, country, or classical music, rather than rock or falsetto opera. I like reading novels, & it's a must if I wish to fall asleep at nite.