Objective: for Fibromyalgics AND others to connect with penpals of similar preferences & symptoms/experiences
My below demo (only the underlined links are active) includes the option to post a response as alternative to email.
If anyone knows a Perl programmer who may be interested in programming this site, I can be reached via here.
REGISTRATION (DEMO FORM)
-- SEARCH-SELECT (DEMO FORM)
| Pen Pal Profile/Preferences
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Experiences/Symptoms
(see Symptom Key) |
Other Symtoms/Non-FM-Experiences/Comments/interests
Foods You Like (truncated after approx. 600-bytes)
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PRIV MAIL ME - REG: 07/2000
Ianna F (pas)
Born: 1961 - Experncd 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)
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FIBROMYALGIA
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-MT MOU-TA NAZL OTHR R.A. SAR SORS SPURS TMP-I TNDR TOE VIT-D XTR-C XTR-S XTR-TW URIN YAW
HEAD: to TOES: VERSION
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17 POSTS (LATEST BY: Ginny - READ MORE / POST)
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!" OR "lower your voice!" Jaundiced (progressive since childhood; as child, mosquitos liked me. Not now......
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POST VIA BOARD ONLY - REG: 07/2000
Ginny F (sem)
Born: 1963 - Experncd Since: 1990
Heigt/Wt: 5' 5" 130 - Masg Harmed
Pal-Preferences: Would like to hear from any kind & intelligent FMer of
any age or gender
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FIBROMYALGIA
BAK BRES CALC CHEM DEPR
FATG HED IBS L-BP MENS OTHR TRIG
HEAD: to TOES: (NT)
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0 POSTS (LATEST BY: NONE READ MORE / POST)
Post Polio Syndrome, and vulvodynia. I have tried everything that my doctor and others in my area have suggested. I have been going to pain management for the last year for lumbar and cervical epidurals
and trigger point injections. I have had daily muscle pain, headaches & depression for YEARS and have so many of the other symptoms of fibro. All of doctors in my area look at you like you're nuts when you try to tell them how you feel. My hobbies are gardening, my kids & pets including my canaries, dog, and who knows what else that's brought......
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POST VIA BOARD ONLY - REG: 10/2000
Cattleman M (pas)
Born: 1947 - Experncd Since: 1957
Heigt/Wt: 5' 11" - Chiro Helped
Pal-Preferences: any guy/gal who's fun & has background in ranching, farming, agriculture, horticulture and crossword puzzles. If you share some of my [few] symptoms, that too would be common ground
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RANCHING
BAK GERD OTHR SKIN WEIT
HEAD: to TOES: (NT)
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0 POSTS (LATEST BY: NONE READ MORE / POST)
I don't have too many symptoms & hope it stays that way. I have acne, once in a while my back goes bonkers on me & then I'm laid flatter 'n a flat tire, but I try to stay away from doctors, they're bad news. I've been told I have high cholestrol, but heck, I'm an ice cream addict ;) but since i'm a wine addict too, and that is good for me, guess it evens out, hmm? speak of experiences, I remember having a near death experience as a child, but don't remember it the way others do. etc. etc......
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POST VIA BOARD ONLY - REG: 11/2000
Tara F (pas)
Born: 1956 - Experncd Since: 1956
Heigt/Wt: 4' 4" - Other Other
Pal-Preferences: male or female dwarf who plays the violin (like I do) etc. etc. etc.
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DWARFISM
[N/A]
HEAD: to TOES: (NT)
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0 POSTS (LATEST BY: NONE READ MORE / POST)
My primary experience is dwarfism, but other than that, no unusual symptoms in particular. etc. etc. etc. |
POST VIA BOARD ONLY - REG: 5/2001
James Hop M (pas)
Born: 1985 - Experncd Since: 1996
Heigt/Wt: 6' 0" - Other Other
Pal-Preferences: others who have experienced people being allergic to them
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PEOPLE ARE ALLERGIC TO ME
[N/A]
HEAD: to TOES: (NT)
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0 POSTS (LATEST BY: NONE READ MORE / POST)
My primary experience is that other people are allergic to me. It makes my life miserable. See what I posted in this newsgroup post. I wonder if my life is more or less complicated than those who suffer human spontaneous invisibility. |
Symptom Key: back to top
[N/A] = not applicable (i.e. no symptoms, or confidential, or below symptoms don't apply to me)
ACNE = adult acne (which may be actually immune system reactions/allergies to certain foods)
ALRG = allerg(ies) - specify more elsewhere
BAK = back problems / back pain - specify more elsewhere
BRAI = brain fog, cognitive impairment affects alertness/memory/speech (say words not meant)
BRES = tender breasts
BRETH = breathing problems
BRUX = bruxism (nocturnal tooth grinding)
CALC = after heavy exercise, blood calcium toward high side (or foggy calcium spots in xrays)
CHEE = cheek pain upon sustained smiling
CHEM = multiple chemical/odor sensitivity (gas, alcohol-based aerosols & perfume)
CHES = chest pain
CPPD = calcium pyrophosphate deposition disease a.k.a. pseudogout (mimics fibromyalgia)
CRAK = creaky crackle-snap joints (or used to before osteoarthritis set in)
DEPR = major depression
DIZ = dizziness &/or imbalance (or nausea) Abnormal, NOT just in car
EAR-D = different/delayed way of registering auditory info (causes misrepresenting speech? specify elsewhere)
EAR-S = noise sensitive (specify more elsewhere)
EAR-T = tinnitus (ringing in ears)
EY-D = visual Discrimination poor (Delayed processing by brain upon scanning info.)
EY-BL = eyes blurry, focus or vision changes
EY-DR = dry eyes
EY-SN = eyes sensitive/sneezy/teary in light/wind/water &/or periodic sharp pain
FATG = fatigue / unrefreshed sleep / insomnia / sleep abnormalities
FEVR = fevers
GERD = esophagul reflux (heartburn) or inability to burp, interferes with swallowing & conversing
GH = low growth hormone (or deficiency
GYM = bad gym memories. Can't throw ball far / touch toes w/o knee bend / cartwheel. Hard to lift hands for long.
GYNO = gynocology cond. (e.g. endometriosis, bleeding, vulvodynia) - specify more elsewhere
HED = bad headaches from stress, odors, fluorescent lighting, bright CRT screens, car travel, cold etc.
HG = hypoglycemia or reactive hypoglycemia
HSP = highly sensitive person (you fit many of the criteria of a HSP - see Elaine Aron's site)
HYPO = hypophosphatemia (mimics fibromyalgia)
HYPR = hypermobile joints (sort of the opposite of "gym" above)
IBS-C = irritable bowel syndrome (tend more to constipation - see Dr. Galland's leaky gut article)
IBS-D = irritable bowel syndrome (tend more to diarrhea)
INF = infection proneness
L-BP = low blood pressure
LAR = tendency to bad laryngitis, sore throat, and/or hacking cough (allergy to cold? or to raw onion/garlic?)
LYMP = swollen lymph nodes
MENS = menstrual cramps (painful periods "dysmenorrhea")
MITR = mitral valve prolapsed
MOOD = mood swings or panic/anxiety attacks (if bipolar specify elsewhere)
MORT = Morton's configuration (feet)
MOU-DR = dry mouth, low saliva (thus maybe taking longer to eat, and/or caused bad tooth decay)
MOU-MT = metallic taste after eating certain [iron?] foods such as spinach, prunes, etc.
MOU-TA = acid or bitter taste often, or as reaction to food combos, other
NAILB = brittle, thick (etc.) nails
NAILW = white spots on nails - leukonychia
NAZL = sinus conditn/ nasal drip from cold wind & hot soup
O.A. = osteoarthritis
OTHR = (see footnote)
PALP = heart palpitations
PMS = premenstrual syndrome
R.A. = rheumatoid arthritis
REY = Reynauds
SAR = sarcopenia (or suspected)-(high ratio of flab to muscle mass)
SKIN = skin conditions (itchy or rashes)
SORS = tongue sores, sores in side corners of mouth (or supertaster - see Bartoshuk's research)
SPURS = bony spurs that are painful (plantar fasciitis) especially in heel
SWET = night sweats
THROM = thrombosis
THY = Thyroid condit. (specify more elsewhere)
TMJ = temporomandibular joint dysfunction (jaw pain)
TMP-I = intolerant to temperature changes (heat/cold)
TMP-L = low (subnormal) body temp. e.g. 96, 97 (or normal only if you're ill)
TNDR = tender points
TOE = occasional swollen, sore toes (pseudogout, perhaps?)
TRIG = trigger points
URIN = urinary problems such as irritable bladder (frequent urge, burning, strong-smell etc.)
VIT-D = Vitamin D deficiency a.k.a. Osteomalacia (mimics fibromyalgia)
WEIT = weight gain or obesity (specify more elsewhere)
XTR-C = cold extremities (hands/feet)
XTR-N = numb or tingly extremities/limbs generally, OR upon sustained imobility
XTR-R = restless leg syndrome (RLS)
XTR-S = stiff/achy/spasm/twitchy/swollen-feelin limbs (OR OTHER) upon sustained imobility OR exertion
XTR-TW = even upon NO exertion, legs compulsively twitch (hyperactive nerves wore out your body? perhaps)
YAW = urge to yawn very often, or to lay head down on table/desk
YEAS = yeast infections
FOOTNOTE:
Specifics and other conditions such as bleeding, carpal tunnel, endometriosis, lupus, hemachromatosis, vulvodynia, post-polio, conditions which mimic fibromyalgia, etc. you may list in "Other Symptoms/Comments", Pal Preferences, HEAD: to TOE: (then others can find you via a keyword search)
SAMPLE FORMAT:
FROM "HEAD TO TOE" (AND/OR WHAT HELPS ME) back to top
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 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); 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 swallowing & conversing during meals, as the burp gets stuck "in there somewhere"); cannot easily vomit
LIVER: Progressively higher bilirubin since I was young. I'm jaundiced at present.
MUSCLES: Tendency to Sarcopenia (ratio of fat/muscle in body cell mass); tender points; (concentrated fat such as pizza, chocolate, etc. aggravates pain, by further blocking my blood flow; apples can counteract fat by "binding" it); cheek muscle pain upon sustained smiling, wrists/arms hurt at sustained writing/typing; 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, embarrassing stomach noises since teens, painful periods, (every so often, I have "darker" heavy bleeding for days between periods, plus soreness - but I've discovered that Bing cherries 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; 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 I only take tea, NEVER citrus drinks, as 'twould neutralize effective digestion
BLADDER: Through my twenties, I'd urinate in direct proportion to the liquid I'd drink (probably 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
BREASTS: Tender when pressure placed on them
JOINTS: Osteoarthritic (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-phosphate buildup
BONES: I never broke any bones in my life despite VERY hard falls (hinting at high bone density). Yet I have HIGH blood calcium (10.4)
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 lacked water retention due to my osteoarthritic 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-phosphates or my hypercalcemia
KNEE-CAPS: lack of adquate cushioning - perhaps due to buildup of calcium-phosphates or my hypercalcemia
FEET: Icy, Dry & flaky
HEELS/SOLES: lack of adequate cushioning - perhaps due to buildup of calcium-phosphates or my hypercalcemia
TOES: In cold weather, middle toes swell & turn red/purple & sore, especially after being stuffed in shoes outside; pre-emptive therapy: alternately soak feet in warm/cold warm/cool water (NOT hot/cold); rub in mineral oil; then dip feet again in pail to rid excess oil; then warm sox
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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).
Alternate (related) Proposal:
Survivors/Experiencers Clearinghouse
Objective: Imagine the below 3 people:
Sal has experienced:
traffic accident
diabetes
spousal abuse
inability to burp or vomit
Al has experienced:
traffic accident plus near death experience
polio
bad asthma
Val has experienced:
consistent bad luck / freaky timing
polio
spousal abuse
Every one of the above people would like to connect to others who share most or all of their experiences. (Note that none of the above is a truly good match for any of the other two, since only one of each of their experiences matches any of the others).
Proposed Solution:
For an experienced programmer to create a Survivors/Experiencers Clearinghouse website, wherein registered members could enter their conditions/experiences, whereupon they'd be entitled to search the databank to try to find others who share most of their background. It may be best for the search engine to be patterned after Google or CareerMosaic or Americas Employers. For example, Val could enter "bad luck bad timing polio abuse" as her search terms; Al could enter "traffic accident nde near death experience polio asthma" as his search terms, and so on.
Furthermore, the conditions for inputting one's symptom-listing into the databank should be very flexible, as well as allowing for a large number of search terms to be entered and successfully searched.
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