Fibromyalgia Case Studies: March 13- April 12, 2008

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4/12/2008
Name: wendy
City: san jose
State: caif
Your Sex: female
Where Were You Born? west covina california
Where Do You Live Now? san jose california
How Long Have You Lived There? 17 years
Your Age? 47
How many years has it been since you developed your symptoms of fibromyalgia? 7 years
Your Age At Onset of Symptoms? 40
What is Your Line of Work? Still working? barber stylist no retail sales yes
Medical History: none
Does Exercise Help? no
What Were Your First Symptoms? all over exteme body pain could not get out of bed high fever
What Are Your Current Symptoms? flu-like aches. joint pain. tired all the time
Did You Ever Have A Long Lasting Virus? yes. bells palsy
Any Military Service? no
Chemical or Pesticide Exposure? hair color and bleach.
How Has Fibro Affected Your Life? yes
What Makes Symptoms Worse? stress, not enough sleep.
What Makes You Feel Better? medication, sleep and rest
Do Your Symptoms Include Brain Fog? yes
How many years has it been since you developed the brain fog associated with fibromyalgia? 1 year
Was Your Rate of Decline Fast? yes zoloft
Have You Tried Avoiding Dietary Fluoride? no
Remedies Tried: neurontin, vicodine. methadone, all meds over the counter
Your Theories: exposure to something that we have come in contact with
Are We Missing Any Important Questions?
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4/11/2008
Name: delphina
City: secret harbour
State: australia
Your Sex: female
Where Were You Born? blackpool england
Where Do You Live Now? secret harbour
How Long Have You Lived There? 10 years
Your Age? 46
How many years has it been since you developed your symptoms of fibromyalgia? 6 years
Your Age At Onset of Symptoms? 40
What is Your Line of Work? Still working? was in fashion displays cant work now.
Medical History: hysterectomy age 34and had glandular fever years ago. have high bp also.
Does Exercise Help? walking an streching helps abit but hurts like hell.
What Were Your First Symptoms? aching all over and could not walk far felt a 100.
What Are Your Current Symptoms? aches awful pain in neck and shoulders.some vertigo and carpel tunnel syndrome dry eyes and feeling pissed off.paic attacks and anxiety.
Did You Ever Have A Long Lasting Virus? epson barr.
Any Military Service? no
Chemical or Pesticide Exposure? just garden sprays and cleaning products'
How Has Fibro Affected Your Life? too right you long to feel like your own self again. living with this is your worst nightmare.each day anew sympton and awful pain cant work and find it hard to see friends they just dont get it. its too hard trying to explain how you feel to anyone
What Makes Symptoms Worse? the weather,doing too much certain foods and people bugging me.
What Makes You Feel Better? sitting in the sun a good nights sleep and taking my vits.
Do Your Symptoms Include Brain Fog? you bet,some days its awful looked at the phone the other day and couldnt remember what it was for /
How many years has it been since you developed the brain fog associated with fibromyalgia? 2 years
Was Your Rate of Decline Fast? came on gradually remember taking astrong drug for whooping cough when i was forty one also got shingles and was given a strong drug for that also.
Have You Tried Avoiding Dietary Fluoride? didnt know it made any difference
Remedies Tried: endep at night helped with sleep for a while but makes you feel spaced out next day. like i need that?iam takink vit b complex mag chelate apple cider vinegar flaxseed oil vit c and virgin coconut oil all this seems to be taking some of the symptons away and making me feel abi better.
Your Theories: what is the link that we all have. is it toxins or hormonal.i think operaions set this off and certain drugs.wish the docs could help find a cure.
Are We Missing Any Important Questions? yes how do we cope and what our diets consist of is there a food link.
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4/11/2008
Name: Robin
City: Baltimore
State: MD
Your Sex: Female
Where Were You Born? NJ
Where Do You Live Now? MD
How Long Have You Lived There? 2 years
Your Age? 58
How many years has it been since you developed your symptoms of fibromyalgia? 30
Your Age At Onset of Symptoms? 28
What is Your Line of Work? Still working? no
Medical History: healthy
Does Exercise Help? no
What Were Your First Symptoms? Flu-like symptoms, fatigue, pain all over but worse in neck, shoulders and back, inablility to concentrate.
What Are Your Current Symptoms? The same - just more severe.
Did You Ever Have A Long Lasting Virus? no
Any Military Service? no
Chemical or Pesticide Exposure? Yes, we had our house exterminated for carpenter ants and the exterminator got the pesticide powder all over everything - I cleaned it up. Not long after I started getting sick.
How Has Fibro Affected Your Life? It's been an unending stuggle...
What Makes Symptoms Worse? Exercise
What Makes You Feel Better? Sleep
Do Your Symptoms Include Brain Fog? Yes - this is one of the most severe symptoms. I'm lucky if I can remember my own name, let alone anyone elses. What scares me is it seems to be getting worse.
How many years has it been since you developed the brain fog associated with fibromyalgia? It started right in the beginning along with the other symptoms.
Was Your Rate of Decline Fast? At first I would only flare about once a month, but would feel ill for four to five days at a stretch. I just thought I was getting the flu all the time. Now the time between flares is much shorter, but the duration is less. I know I was on antibiotics, but I was on antibiotics a lot.
Have You Tried Avoiding Dietary Fluoride? I just started after reading Jason's article.
Remedies Tried: Over thirty years there is not much I haven't tried. The latest was going to South Lake Tahoe to a clinic for two months.
Your Theories: The flouride theory makes sense to me. Two weeks ago I whitened my teeth overnight (using trays)and I was sick the next day. I always thought my problems were related to the pesticide exposure.
Are We Missing Any Important Questions?
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4/10/2008
Name: bettye
City: grant
State: al
Your Sex: female
Where Were You Born? chocotah, ok
Where Do You Live Now? grant, al
How Long Have You Lived There? 23 years
Your Age? 52
How many years has it been since you developed your symptoms of fibromyalgia? 10
Your Age At Onset of Symptoms? early 40s
What is Your Line of Work? Still working? receiving clerk and claims clerk yes
Medical History: hypertension hysterectomy fibro
Does Exercise Help? exercise kills me. i hurt so bad i can't work.
What Were Your First Symptoms? body felt like i had the flu, but i really felt ok. tender places that hurt to touch
What Are Your Current Symptoms? after work, i start aching badly. i then stiffen and the pain increases to the point that i can't be still. i call it freaking out.
Did You Ever Have A Long Lasting Virus? not sure. i had polio as a child, the german measles and scarlet fever.
Any Military Service? no
Chemical or Pesticide Exposure? only household things
How Has Fibro Affected Your Life? i can't enjoy things. i can't play with my grandchildren like i would like to and by nightfall the pain is so bad, my mood keeps everyone away.
What Makes Symptoms Worse? weather seems to affect it, exercise or heavy lifting at work
What Makes You Feel Better? hot bath (doesn't last), massage (temporary) and i invert (helps temporary)
Do Your Symptoms Include Brain Fog? yes, but i thought that was just me. sometimes i just stand there and can't get my thoughts moving
How many years has it been since you developed the brain fog associated with fibromyalgia? this is fairly recent
Was Your Rate of Decline Fast? no, i think this was gradual, but i started seeing doctors and they told me i was just too sensitive to pain.
Have You Tried Avoiding Dietary Fluoride? no. no one has suggested that before
Remedies Tried: tried different prescription pain pills (they don't help much), musenix (but the process was too painful), herbs for relaxing, and lots of icy hot
Your Theories: theories? those i have, but they are just that. if i could get past the painfulness of exercise, i think that stronger muscles would help. it is like i have toxin build up in my muscle tissue. pain like this really wears a person down it affects everyone around us too. my husband will look over at me and ask whats wrong with you. i am so tired of saying, i am in so much pain. i don't think anyone can understand unless the have this or have had a bad flu for a year or two.
Are We Missing Any Important Questions?
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4/10/2008
Name: Marisa
City: Austin
State: Texas
Your Sex: Female
Where Were You Born? California
Where Do You Live Now? Austin
How Long Have You Lived There? 3 yrs
Your Age? 31
How many years has it been since you developed your symptoms of fibromyalgia? 3 yrs
Your Age At Onset of Symptoms? 29
What is Your Line of Work? Still working? Receptionist
Medical History:
Does Exercise Help? walk my dogs
What Were Your First Symptoms? Muscle pain, Severe Fatigue, migranes
What Are Your Current Symptoms? Muscle pain, nerve pain, unable to sleep, sever fatigue
Did You Ever Have A Long Lasting Virus? I was bitten by my cat in '05 and I believe that the virus triggered the fibro.
Any Military Service? no
Chemical or Pesticide Exposure? no
How Has Fibro Affected Your Life? Lost one job due to illness and I can only work part time because of the severe fatigue and pain.
What Makes Symptoms Worse? I don't know
What Makes You Feel Better? Pain medicine, heating pad.
Do Your Symptoms Include Brain Fog? OOOHHHH YES!!!
How many years has it been since you developed the brain fog associated with fibromyalgia? 3 years
Was Your Rate of Decline Fast? Yes. Right after infection from cat bite. I don't remember the name of the antibiotic they gave me.
Have You Tried Avoiding Dietary Fluoride? no
Remedies Tried: I am now trying Lyrica
Your Theories: no
Are We Missing Any Important Questions? no
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4/7/2008
Name: Pam
City: Mt. Pleasant
State: SC
Your Sex: female
Where Were You Born? Charleston, SC
Where Do You Live Now? Mt. Pleasant, SC
How Long Have You Lived There? recently 12 years
Your Age? 44
How many years has it been since you developed your symptoms of fibromyalgia? 7
Your Age At Onset of Symptoms? 37
What is Your Line of Work? Still working? Administative assistant and have worked in photo lab. Not able to work the past 7 years, after surgery-historectomy.
Medical History: 1987-hospitalized sinus infection. 1991-C-Section 1998-2002-excessive & frequent periods.plus CFS 2002-historectomy-never recovered from surgery & developed severe IBS & FMS 2002-laproscopy to remove excessive scar tissue in abdomen 2006-removed ovaries & excessive scar tissue. Presently-diagnosed mild RA and still suffer from IBS,FMS,CFS & Excessive food allergies. Also can't take antibiotics-makes IBS flair terribly.
Does Exercise Help? just started walking. Plan to start Yoga and Pilates.
What Were Your First Symptoms? CFS,Brain Fog,Long term Memory Loss,eye pain,swelling all over then problems with period.
What Are Your Current Symptoms? the usual laundry list of FMS symptoms to the point of disability.
Did You Ever Have A Long Lasting Virus? Yes
Any Military Service? Military Brat
Chemical or Pesticide Exposure? Possibly while working in photo lab in 1995-1996
How Has Fibro Affected Your Life? Completely.Disabled
What Makes Symptoms Worse? Physical activity, excessive sunlight, Antibiotics
What Makes You Feel Better? Light physical activity,Indirect Sunlight, Pain meds-Lortab & Lyrica
Do Your Symptoms Include Brain Fog? Yes
How many years has it been since you developed the brain fog associated with fibromyalgia? Not sure, First Long term memory loss(1996) then 2002 after surgery.
Was Your Rate of Decline Fast? Serzone, Birth control shot, then surgery 2002-Antibiotics.
Have You Tried Avoiding Dietary Fluoride? No
Remedies Tried: I am on about 12 different meds.
Your Theories: As a military dependent, I lived in Naval housing in Hawaii off and on from age 5 to age 20 for a total of 10 years. Also lived in Mechanicsburg PA military base 1.5 years(near three mile island)moved right before melt down)and the rest of my life was mostly lived in Charleston and other parts of SC. Near Nucleur Plants.
Are We Missing Any Important Questions?
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4/6/2008
Name: Marie
City: Walla Walla
State: WA
Your Sex: f
Where Were You Born? Coos Bay Oregon
Where Do You Live Now? Walla Walla WA
How Long Have You Lived There? 6 yrs
Your Age? 49
How many years has it been since you developed your symptoms of fibromyalgia? 10+
Your Age At Onset of Symptoms? 35-38
What is Your Line of Work? Still working? office, yes
Medical History: familial hyper cholestrol lipidimea and untreated hypothyroidism
Does Exercise Help? maybe walking, still not sure
What Were Your First Symptoms? headache, jaw tightness, ache & cramps in arms & legs
What Are Your Current Symptoms? fog, restless legs, inabiltiy to sleep for more that a few hours at a time, pain in extremities, jaw pain, headaches, ibs, tendon/joint pain, depression
Did You Ever Have A Long Lasting Virus? mono
Any Military Service? no
Chemical or Pesticide Exposure? lived in a fruit orchard for 19 years
How Has Fibro Affected Your Life? not as active as I'd like, always tired, not interested in social activities
What Makes Symptoms Worse? two weeks before period are always worse
What Makes You Feel Better? advil, but can't take it anymore due to ulcer. 400 mg CoQ10 seems to help the muscle pain
Do Your Symptoms Include Brain Fog? absolutely, with some stutter that was not present earlier
How many years has it been since you developed the brain fog associated with fibromyalgia? Not sure, but I think it came on in the beginning
Was Your Rate of Decline Fast? Yes, I was diagnosed with familial hypercholestrol lypidimia about the same time and started my first statin about then. Also a diet pill, popular when phen-fen was, Redux?
Have You Tried Avoiding Dietary Fluoride? No.
Remedies Tried: advil & coQ10
Your Theories: still on statins, I believe the CoQ10 helps, but after years of thinking I was nuts, I find that so may of the theoretical causes have been a part of my life. Statins; fluorides by way of years of living in a fruit orchard and an area with an abundance of natural occuring fluoride in the well water. I did take a cousin of phen-fen and have been on various antidepresants for about 15 years, paxil and prozac included.
Are We Missing Any Important Questions? I would be curious if others have found a connection between fybromialgia, statins and CoQ10. Also, how was it diagnosed? I was finally sent to a Rheumatologist.
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4/5/2008
Name: Giuseppina
City: Lasalle
State: Canada
Your Sex: female
Where Were You Born? Italy
Where Do You Live Now? Canada (Montreal)
How Long Have You Lived There? 42
Your Age? 72
How many years has it been since you developed your symptoms of fibromyalgia? 12 years
Your Age At Onset of Symptoms? 60
What is Your Line of Work? Still working? no
Medical History:
Does Exercise Help? None
What Were Your First Symptoms? Inner body trembling
What Are Your Current Symptoms? Body shaking, muscles pulling burning sensation from head to toe. Loss of appetite, my stomach is completly closed
Did You Ever Have A Long Lasting Virus? yes
Any Military Service? no
Chemical or Pesticide Exposure? no
How Has Fibro Affected Your Life? Depressed all the time
What Makes Symptoms Worse? stress
What Makes You Feel Better? nothing right now anymore.
Do Your Symptoms Include Brain Fog? yes
How many years has it been since you developed the brain fog associated with fibromyalgia? a few months ago
Was Your Rate of Decline Fast? I was taking antibiotics for sinus infection
Have You Tried Avoiding Dietary Fluoride? no
Remedies Tried: just natural products (adrian gagnon) and (Dr martin) but it doesnt work for me no more
Your Theories: This has to be the worst anyone can ever go through, at least cancer has some kind of cure but I dont think my pains will EVER go away.
Are We Missing Any Important Questions?
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4/5/2008
Name: Jacque
City: Quanah
State: TX
Your Sex: F
Where Were You Born? Abilene, TX
Where Do You Live Now? Quanah, TX
How Long Have You Lived There? 29 years
Your Age? 51
How many years has it been since you developed your symptoms of fibromyalgia? 6
Your Age At Onset of Symptoms? 45
What is Your Line of Work? Still working? Secretarial. Yes
Medical History: Epilepsy (brain surgery 15 years ago got rid of this), menstrual problems, hysterectomy, gall bladder removal,migraines, insomnia, heavy NSAID and prescription useage, weight gain due to hypothyroidism, inflamed colon
Does Exercise Help? Only to a degree. The more problems I have with weight gain, the stronger I exercise and the more I hurt my muscles.
What Were Your First Symptoms? sharp, shooting pains in lower arm.
What Are Your Current Symptoms? pain in lower arms, upper arms, feet, upper and lower legs, and now in my back
Did You Ever Have A Long Lasting Virus? no
Any Military Service? no
Chemical or Pesticide Exposure? no
How Has Fibro Affected Your Life? made it miserable
What Makes Symptoms Worse? over-doing exercise and going without my Original Limu. Limu helps my pain greatly.
What Makes You Feel Better? Original Limu
Do Your Symptoms Include Brain Fog? I've had short-term memory damage for 30 years due to seizures and seizure medications. I still live with it, though the epilepsy is gone and medications aren't taken. I don't know that the FM has made it worse or not.
How many years has it been since you developed the brain fog associated with fibromyalgia? I don't know.
Was Your Rate of Decline Fast? no
Have You Tried Avoiding Dietary Fluoride? I've just now quit using flouride toothpastes, within the past month.
Remedies Tried: Original Limu (seaweed), B12, magnesium, vitamin D
Your Theories: There's no way on this earth I'll try Lyrica, Neurotin, or other prescriptions for this. After having been on anti-seizure medications for 36 years, I know better than any doctor what their long-term side effects are. I'm living daily with the serious consequences of being on anti-epileptic drugs for long term. I'm looking for natural remedies and have got to learn not to overdo my exercise.
Are We Missing Any Important Questions? Not that I can think of
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4/2/2008
Name: Marlene
City: Minneapolis
State: Minnesota
Your Sex: f
Where Were You Born? Wichita Falls, TX
Where Do You Live Now? Minneapolis
How Long Have You Lived There? 12
Your Age? 60+
How many years has it been since you developed your symptoms of fibromyalgia? 20
Your Age At Onset of Symptoms? 40
What is Your Line of Work? Still working? Administrative Assistant, Yes
Medical History: Pain all over total knee replacements
Does Exercise Help? no - I always walk, pain never goes
What Were Your First Symptoms? neck stiffening
What Are Your Current Symptoms? Very bad pain all over.
Did You Ever Have A Long Lasting Virus? Hep B, now have Hep B. antibodies
Any Military Service? no
Chemical or Pesticide Exposure? Any chem makes me feel awful
How Has Fibro Affected Your Life? No sleep, no easy movement
What Makes Symptoms Worse? sugar, eating bad foods, approaching storms.
What Makes You Feel Better? Good diet and good weather
Do Your Symptoms Include Brain Fog? No, not yet.
How many years has it been since you developed the brain fog associated with fibromyalgia?
Was Your Rate of Decline Fast? Can't remember
Have You Tried Avoiding Dietary Fluoride? No, never heard of it being something to avoid..
Remedies Tried: Citrical and enteric coated aspirin
Your Theories: I need help. Doctors are worthless
Are We Missing Any Important Questions?
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4/2/2008:
Name: Sylvia
City: North Battlefortd
State: Cananda
Your Sex: Female
Where Were You Born? Saskatchewan
Where Do You Live Now? North Battleford
How Long Have You Lived There? 55 years
Your Age? 55
How many years has it been since you developed your symptoms of fibromyalgia? 15 years
Your Age At Onset of Symptoms? 40
What is Your Line of Work? Still working? Casino employee
Medical History:
Does Exercise Help? Daily activiyies
What Were Your First Symptoms? achy feelings
What Are Your Current Symptoms? Somewhat the same, early in the day
Did You Ever Have A Long Lasting Virus? Don't know
Any Military Service?
Chemical or Pesticide Exposure? ?
How Has Fibro Affected Your Life? Limited activities
What Makes Symptoms Worse? Over tired
What Makes You Feel Better? Rest / movememnt
Do Your Symptoms Include Brain Fog? Lately it has been more noticiable
How many years has it been since you developed the brain fog associated with fibromyalgia? 3 years
Was Your Rate of Decline Fast? No
Have You Tried Avoiding Dietary Fluoride? Don't know
Remedies Tried: None
Your Theories: Have started using Apple Cider Vimegar, is helping
Are We Missing Any Important Questions?
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4/2/2008
Name: MD
City: ST. LOUIS
State: MO
Your Sex: FEMALE
Where Were You Born? ST. LOUIS
Where Do You Live Now? ST. LOUIS
How Long Have You Lived There? OFF/ON 55 YEARS
Your Age? 55
How many years has it been since you developed your symptoms of fibromyalgia? 3 OR 4
Your Age At Onset of Symptoms? 52
What is Your Line of Work? Still working? admin. assist.
Medical History: Nothing major. Some allergies.
Does Exercise Help? ONLY STRETCHING EXCERCISES. CAN'T DO ANYTHING ELSE OR A MUSCLE WILL BE PULLED. MODERATE DANCE IS GOOD.
What Were Your First Symptoms? STIFFNESS IN MUSCLES AND LOTS OF ACHES/PAIN AND PULLED MUSCLES.
What Are Your Current Symptoms? HURT EVERYWHERE, ESPECIALLY IN THE BACK/NECK AREA. HAS MADE ARTHRITIS WORSE.
Did You Ever Have A Long Lasting Virus? NONE THAT I KNOW OF
Any Military Service? YES. ARMY. 1975-1977
Chemical or Pesticide Exposure? NONE THAT I KNOW OF.
How Has Fibro Affected Your Life? CAN'T DO SOME THINGS. CAN'T DO A LOT OF BENDING ON MY JOB, CAN'T LEAN OVER TABLE TO SEW, CAN'T WALK LONG WAYS, ETC.
What Makes Symptoms Worse? BAD WEATHER/ COLD/DAMP
What Makes You Feel Better? MASSAGE/LIGHT STRETCHING
Do Your Symptoms Include Brain Fog? NOT REALLY. I'M PRETTY SHARP. (OR SO I'M TOLD)
How many years has it been since you developed the brain fog associated with fibromyalgia? NONE
Was Your Rate of Decline Fast? YES, IT CAME QUICKLY. I THINK I WAS ONLY ON A "ANTI HEARTBURN" MED SUCH AS PRILOSEC, PREVACID, ETC. CAN'T REMEMBER WHICH. BUT I DO REMEMBER THAT AS EARLIER YEARS WENT BY, I WOULD HAVE A STIFF NECK, PULLED MUSCLES, ETC. DIDN'T KNOW WHY. WONDERING IF THAT COULD HAVE BEEN THE "START" OF THE FIBRO, EVEN ALL THOSE YEARS AGO
Have You Tried Avoiding Dietary Fluoride? NO. NOT SURE WHAT THAT IS.
Remedies Tried: ANTI-INFLAMMATORIES, BUT HAD TO STOP BECAUSE THEY REALLY TORE UP MY ESOPHAGUS. THEY DO MAKE IT BETTER THOUGH. I JUST CAN'T TAKE THEM. THEY NEED TO COME OUT WITH A "SHOT" FOR FIBRO SO IT BYPASSES TO STOMACH AREA. WAS ON PREDISONE FOR SOMETHING AND IT ACTUALLY WAS GOOD TOO.
Your Theories: NOT SURE WHAT BRINGS IT ON, BUT IT'S A PAIN IN THE BUTT. I'M EXHAUSTED AT THE END OF THE DAY AND CAN'T DO THE THINGS I WANT. REALLY WISH SOMEONE WOULD COME OUT WITH A SHOT THAT COULD BE TAKEN INSTEAD OF ORAL MEDS. NOT EVERYONE CAN TAKE MEDS. Also, we were raised in the country and drank well water. I've always wondered if bad well water could have been PART of the cause.??
Are We Missing Any Important Questions? YES.. you didn't ask what medications people are currently on. Would that be a factor? Also, you didn't ask if other family memebers has it. My sister had it, then got cancer and passed away. I have 2 cousins that have it, from different sides of the family.
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3/30/2008
Name: jessie
City: Tulsa
State: ok
Your Sex: female
Where Were You Born? enid
Where Do You Live Now? tulsa
How Long Have You Lived There? 35yr
Your Age? 60
How many years has it been since you developed your symptoms of fibromyalgia? all the time
Your Age At Onset of Symptoms? 50
What is Your Line of Work? Still working? yes customer service
Medical History: fair
Does Exercise Help? no
What Were Your First Symptoms? pain in legs neck arms week
What Are Your Current Symptoms? pain in my body
Did You Ever Have A Long Lasting Virus? no
Any Military Service? n/a
Chemical or Pesticide Exposure? n/a
How Has Fibro Affected Your Life?
What Makes Symptoms Worse? when i am up doing things
What Makes You Feel Better? the new medacine lisa gave me ultram
Do Your Symptoms Include Brain Fog?
How many years has it been since you developed the brain fog associated with fibromyalgia?
Was Your Rate of Decline Fast?
Have You Tried Avoiding Dietary Fluoride? no
Remedies Tried:
Your Theories:
Are We Missing Any Important Questions?
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3/29/2008:
Name: Laura
City: Menomonie
State: WI
Your Sex: Female
Where Were You Born? Wisconsin
Where Do You Live Now? Menomonie, WI
How Long Have You Lived There? 15
Your Age? 44
How many years has it been since you developed your symptoms of fibromyalgia? 20
Your Age At Onset of Symptoms? 22
What is Your Line of Work? Still working? Bookkeeping - Yes
Medical History: Back surgery- Lumber 5 Gallbladder removed
Does Exercise Help? no
What Were Your First Symptoms? Tired all the time, achy all over
What Are Your Current Symptoms? Achy, tire easily, muscle and joint pain-tightness
Did You Ever Have A Long Lasting Virus? Mono in 1988
Any Military Service? No
Chemical or Pesticide Exposure? tooth fillings with metals in.
How Has Fibro Affected Your Life? Had to readjust. Work out of my home now. Cut back on activities, social and other
What Makes Symptoms Worse? Lack of sleep, cold, stress
What Makes You Feel Better? Massages
Do Your Symptoms Include Brain Fog? At times
How many years has it been since you developed the brain fog associated with fibromyalgia? Since the beginning - in 1988
Was Your Rate of Decline Fast? No
Have You Tried Avoiding Dietary Fluoride? No
Remedies Tried: Amitrytalin, Effexor (All Antidepressants in low doses)
Your Theories: After I got Mono is when my symptoms really became evident. When I was a child I would tire easily in my ankles and arms/shoulders. Always have had bad posture
Are We Missing Any Important Questions? Is your sleep restful, (Heavy or light sleeper)
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3/28/2008
Name: Cathy
City: Saint John, NB
State: Canada
Your Sex: female
Where Were You Born? same as above
Where Do You Live Now? same as above
How Long Have You Lived There? 45 yrs
Your Age? 45
How many years has it been since you developed your symptoms of fibromyalgia? 3
Your Age At Onset of Symptoms? 42
What is Your Line of Work? Still working? office work/payroll yes, I am still working
Medical History: hypothyroidism Raynauds syndrome carpal tunnel
Does Exercise Help? sometimes but other times it makes me hurt...for days
What Were Your First Symptoms? shortness of breath while walking up hills that I had been walking up for months with no problem, tingling in fingers and toes, EXTREME swelling in hands and legs, also in face, very painful legs, tired, very tired
What Are Your Current Symptoms? still some shortness of breath, the tingling in the fingers and toes is still there but less frequent, the swelling is still happening, legs and arms still ache but I can have a few days of relief in between bouts of pain, stiffness in joints
Did You Ever Have A Long Lasting Virus? no
Any Military Service? no
Chemical or Pesticide Exposure? no
How Has Fibro Affected Your Life? I feel old..very old. before this happened I was feeling very good then suddenly everything fell apart. I have difficulty doing house work, ie: carrying the laundry basket up the stairs,doing the dishes because my hands cramp,sewing and knitting are almost impossible I can't walk as often as I would like so I've gained weight,I feel unattractive, I feel depressed because I can't do what I want and useless for the same reason, taking my dog out on a leash hurts my arms if he pulls, I have to stop and determine if doing something is worth the pain that I may have to deal with over the next few days
What Makes Symptoms Worse? stress definately plays a big part...I can feel my hands and legs swell when I start to become stressed
What Makes You Feel Better? hot baths/showers, laying down and rising my legs and arms
Do Your Symptoms Include Brain Fog? rarely
How many years has it been since you developed the brain fog associated with fibromyalgia?
Was Your Rate of Decline Fast? yes crestor (I thought this was making the muscles in my legs ache...(tests indicated otherwise)
Have You Tried Avoiding Dietary Fluoride? no
Remedies Tried: the fibromyalgia has only been identified in the last 3 months so I have only been on elavil since it was diagnosed before the diagnoses my family doctor had me on several meds to try to help....adalat, altase, viaga(yes, I said viagra! just gave me a big headache) edicrine...just to name a few...i can't remember all of them
Your Theories: I saw 5 or 6 "specialists"...all of whom had no idea what was wrong with me... one of the specialists was a rheumatologist and none of them even suggested fibromyalgia..they basically just shook their heads and said they had no idea of what was wrong with me...it was even suggested that perhaps I was unconsciously making myself sick. I finally went to an allergy specialist( last ditch effort to find help) and she suggested I see a neurologist and he diagnosed fibromyalgia in 15 minutes! Why aren't more doctors more aware of the signs and symptoms?...very frustrating!.....
Are We Missing Any Important Questions? lengh of time for diagnosis?
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3/28/2008
Name: APRIL
City: RICHMOND
State: VA
Your Sex: FEMALE
Where Were You Born? GA
Where Do You Live Now? RICHMOND
How Long Have You Lived There? 20 YEARS
Your Age? 36
How many years has it been since you developed your symptoms of fibromyalgia? 5
Your Age At Onset of Symptoms? 30
What is Your Line of Work? Still working? OFFICE MANGER BUT I WAS A BARTENDER AND HAD TO WUIT BEACUSE PAIN GOT SO BAD
Medical History: HAD CANCER AT 23 OD THE CERVICS HAD TMJ AT 25 HAD TO HAVE PINS PUT IN MY JAW
Does Exercise Help? NO IT MAKES IT WORSE
What Were Your First Symptoms? FUNNY TASTE AND SMELL ALSO SERVE PAIN IN THE KNEES
What Are Your Current Symptoms? PAIN IN HIPS SHOLDER RIGHT PAIN UNDER RIBS
Did You Ever Have A Long Lasting Virus? YES I SEEM TO STAY SICK FOR MO AT A TIME
Any Military Service? NO
Chemical or Pesticide Exposure? WELL I HAD KAROSEN BLWO UP IN MY FACE WHEN I WAS 16 TEEN
How Has Fibro Affected Your Life? WELL MY FAMILY THINK I AM NUTS AND THE DOCTORS WELL UNTIL LATLEY COULD NOT EVEN PUT A NAME ON IT.
What Makes Symptoms Worse? MOVING
What Makes You Feel Better? FOR THE PAIN TO STOP
Do Your Symptoms Include Brain Fog? SOMETIMES
How many years has it been since you developed the brain fog associated with fibromyalgia? IN THE PAST YEAR IT WORSE
Was Your Rate of Decline Fast? NO I JUST REMENBER TAKEN MUSEL RELAXER AND PAIN KILLERS
Have You Tried Avoiding Dietary Fluoride? NO
Remedies Tried: NONE JUST HAD A DOCTOR PUT A NAME TO IT
Your Theories: NO
Are We Missing Any Important Questions? NO
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3/27/2008
Name: debra
City: syracuse
State: ny
Your Sex: female
Where Were You Born? pennsylvania
Where Do You Live Now? syracuse
How Long Have You Lived There? 30 years
Your Age? 51
How many years has it been since you developed your symptoms of fibromyalgia? 2 1/2 years
Your Age At Onset of Symptoms? 49
What is Your Line of Work? Still working? work at home still working
Medical History: good health
Does Exercise Help? does not help walk 5 miles day
What Were Your First Symptoms? elbows hert
What Are Your Current Symptoms? arms sholders chest aches, can never sleep very tired, very week
Did You Ever Have A Long Lasting Virus? don't think so
Any Military Service? no
Chemical or Pesticide Exposure? no
How Has Fibro Affected Your Life? the hurting and the weakness
What Makes Symptoms Worse? without rest
What Makes You Feel Better? nothing
Do Your Symptoms Include Brain Fog? yes, very much
How many years has it been since you developed the brain fog associated with fibromyalgia? since about 2 months after I discovered it
Was Your Rate of Decline Fast? yes, I did Ultram anitrilpine ? wrong spelling
Have You Tried Avoiding Dietary Fluoride?
Remedies Tried: medication ultram amitripitline ? wrong spelling
Your Theories: My comment is I am a different person,and I wonder how I can surrive and go on.
Are We Missing Any Important Questions?
------------------------------------------------

3/27/2008
Name: Janelle
City: Miami
State: FL
Your Sex: Female
Where Were You Born? Miami
Where Do You Live Now? Miami
How Long Have You Lived There? 30 years
Your Age? 30
How many years has it been since you developed your symptoms of fibromyalgia? 5 years
Your Age At Onset of Symptoms? mid twenties
What is Your Line of Work? Still working? I've left the corporate world and am enrolled in Grad School.
Medical History: I just kept going to the doctor with all of these pains, and the chronic fatigue. I had low white blood cells and every test imaginable was done on me. One doctor found something that she termed an inflammatory agent and started talking to me about Fibromyalgia. When I read up on it, it made sense... Every symptom, I had it!
Does Exercise Help? Walking helps.
What Were Your First Symptoms? Fatigue.
What Are Your Current Symptoms? NONE
Did You Ever Have A Long Lasting Virus? YES!!! I even wound up one time in the hospital with symptoms that sounded like Menegitis, but ruled out.
Any Military Service? Nope
Chemical or Pesticide Exposure? Nope
How Has Fibro Affected Your Life? Yes, it affected me working long hours and much traveling in the corporate world. Too tired to do things with my son.
What Makes Symptoms Worse? Eating Conventional Food.
What Makes You Feel Better? Since I've changed my diet to Organic Food only, I've had no symptoms. I've even lost weight... And I eat everything organic: pizza, chocolate, cheese...
Do Your Symptoms Include Brain Fog? It used to... Horrible when you are driving and you have a brain fog (like where am i type of weirdness)
How many years has it been since you developed the brain fog associated with fibromyalgia? Maybe the last year before changing my diet?
Was Your Rate of Decline Fast? Yes, it would be sudden.
Have You Tried Avoiding Dietary Fluoride? Haven't heard that...
Remedies Tried: -pain medication -weekly massages (very expensive) -herbal teas -therapy... i thought i was going crazy...
Your Theories: My Theory: I think that there is some chemical or pesticide that is used in foods that certain people have a low tolerance for... For example, an allergy. Some people are allergic to certain foods and others aren't. I think there's a common link of something that may not be potent in certain dosages to most people but may cause these symptoms in others. Other reasons for that... Like if you have fibro. chances are you have a problem losing weight. Now think, if you are having an allergy attack, your cells swell up, even your face swells up. I think the same thing happens with the body... thus problems losing weight and all of these other associated problems.
Are We Missing Any Important Questions? Thanks!
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3/27/2008
Name: Tammy
City: Lake Worth
State: FL
Your Sex: Female
Where Were You Born? Ohio
Where Do You Live Now? Florida
How Long Have You Lived There? 10 years + 12 years growing up
Your Age? 50
How many years has it been since you developed your symptoms of fibromyalgia? 6
Your Age At Onset of Symptoms? 44
What is Your Line of Work? Still working? Secreterial/ work from home
Medical History: none prior to the last 6 years/ now have high blood pressure, weight gain fibromyalgia
Does Exercise Help? some but the relief doesn't last
What Were Your First Symptoms? neck shoulder pain aches all over, tiredness, irritability
What Are Your Current Symptoms? Hurt all over all the time hard to sit have trouble sleeping.
Did You Ever Have A Long Lasting Virus? not that I remember. I was very sick with strep throat in my mid 20's
Any Military Service? no
Chemical or Pesticide Exposure? not none
How Has Fibro Affected Your Life? In every way I don't feel like doing much I can't get out and play like I used too. I have alot of anxiety now.I can't do yard work and hike etc. like I used too.
What Makes Symptoms Worse? Any kind of lifting, bending
What Makes You Feel Better? walking,
Do Your Symptoms Include Brain Fog? Oh yes
How many years has it been since you developed the brain fog associated with fibromyalgia? 3 yrs
Was Your Rate of Decline Fast? yes/ cortisone shots
Have You Tried Avoiding Dietary Fluoride? no, I was never aware of the risks.
Remedies Tried: celebrex,tylenol, advil,aleve
Your Theories:
Are We Missing Any Important Questions?
-------------------------------------------------------

3/26/2008
Name: Kim D.
City: Fort Walton Beach
State: Fl
Your Sex: Female
Where Were You Born? Ohio
Where Do You Live Now? FWB, Florida
How Long Have You Lived There? 29 years
Your Age? 39
How many years has it been since you developed your symptoms of fibromyalgia? 11
Your Age At Onset of Symptoms? 28
What is Your Line of Work? Still working? Home Daycare, yes
Medical History: asthma
Does Exercise Help? no difference
What Were Your First Symptoms? flu-like symtoms, fatique,bodie aches, sore
What Are Your Current Symptoms? same, sometimes more intense, sometimes less
Did You Ever Have A Long Lasting Virus? yes
Any Military Service? no
Chemical or Pesticide Exposure? not to knowledge
How Has Fibro Affected Your Life? Have become less active, don't able to work in the outside world, avoid life.
What Makes Symptoms Worse? if i get around people that are sick, over do. eat the wrong thing
What Makes You Feel Better? rest-sometimes. Time
Do Your Symptoms Include Brain Fog? Oh yes
How many years has it been since you developed the brain fog associated with fibromyalgia? 6 or so
Was Your Rate of Decline Fast? yes, and no don't recall
Have You Tried Avoiding Dietary Fluoride? no, never thought about it
Remedies Tried: I have been on plaqinel,wellbutrin, lexpro(to get my brain right with the pain, right),etodolac, methotrexate,folic acid,topmax,ambien,celebrex. you name it i've been on it.
Your Theories: I not only suffer with fibro, but also RA,OA, and Lupus,hypothyroidism they say that all corresponed with each other. I think that alot of the meds that I was on contriibuted to the other diseases.
Are We Missing Any Important Questions?
-------------------------------------------

3/24/2008
Name: sharon
City: gold coast
State: australia
Your Sex: female
Where Were You Born? sydney
Where Do You Live Now? gold coast
How Long Have You Lived There? 25 years
Your Age? 50
How many years has it been since you developed your symptoms of fibromyalgia? 3 yesrs
Your Age At Onset of Symptoms? 47
What is Your Line of Work? Still working? 20
Medical History: high blood presure
Does Exercise Help? walking
What Were Your First Symptoms? pain in back hips legs pain l
What Are Your Current Symptoms? pain in back hip leg sholder spine
Did You Ever Have A Long Lasting Virus?
Any Military Service?
Chemical or Pesticide Exposure? hairdressing cemicals
How Has Fibro Affected Your Life? yes icanot do the things i want to do
What Makes Symptoms Worse? cold weather air condition and fans
What Makes You Feel Better? rest hot water bottles
Do Your Symptoms Include Brain Fog? yes some day icanot think
How many years has it been since you developed the brain fog associated with fibromyalgia? i think brain fog started 3 years ago
Was Your Rate of Decline Fast?
Have You Tried Avoiding Dietary Fluoride?
Remedies Tried: fibroplex
Your Theories:
Are We Missing Any Important Questions?
-------------------------------------------------

3/24/2008
Name: Anne
City: kerry
State: ireland
Your Sex: female
Where Were You Born? kerry
Where Do You Live Now? tralee
How Long Have You Lived There? 44
Your Age? 44
How many years has it been since you developed your symptoms of fibromyalgia? 2
Your Age At Onset of Symptoms? 42
What is Your Line of Work? Still working? managerial
Medical History: none
Does Exercise Help? walking
What Were Your First Symptoms? pains and tiredness
What Are Your Current Symptoms? pains
Did You Ever Have A Long Lasting Virus? no
Any Military Service?
Chemical or Pesticide Exposure?
How Has Fibro Affected Your Life? can't do much heavy work
What Makes Symptoms Worse? pulling and dragging
What Makes You Feel Better? sleep
Do Your Symptoms Include Brain Fog? yes
How many years has it been since you developed the brain fog associated with fibromyalgia? 1
Was Your Rate of Decline Fast? no
Have You Tried Avoiding Dietary Fluoride?
Remedies Tried:
Your Theories:
Are We Missing Any Important Questions?
------------------------------------------------------------------------

3/23/2008
Name: Carol
City: La Verne
State: CA
Your Sex: Female
Where Were You Born? Virginia
Where Do You Live Now? CA
How Long Have You Lived There? 40 years
Your Age? 46
How many years has it been since you developed your symptoms of fibromyalgia? 25
Your Age At Onset of Symptoms? 23
What is Your Line of Work? Still working? Computer Analyst. Not working, too much fatigue
Medical History: Diagnosed with chlamydia at 23, IBS at 26, fibromyalgia at 36, breast cancer at 45
Does Exercise Help? No, at this point it just takes resources
What Were Your First Symptoms? Fatigue, difficulty recovering from colds and flue, unable to withstand temp. changes, bowel problems, food intolerances, back and neck pain, depression, insomnia , hair loss, etc.
What Are Your Current Symptoms? much the same but worse. Fatigue is so severe I am barley able to walk. Takes an enormous effort to do anything.
Did You Ever Have A Long Lasting Virus? EBV and chlamdyia
Any Military Service? no
Chemical or Pesticide Exposure? At 14 had a filling put into my mouth, it was full of mercury, turned my gum black. When I was 17 I went on birth control which had aluminum, when I was 26 I went on antidepressants full of fluoride, then off and on of other antidepressants and antibiotics, at the age of 45 I was sprayed in the face with a high concentration of malathion pesticide. A month later I had cancer.
How Has Fibro Affected Your Life? I have lost 70% of of my life. I can not take care of my 7 year old son, I can not work, and I am barley able take care of myself. I wish I was dead most of the time. Now with cancer, and no real cure for my condition (not just the cancer but everything), I wonder what the point is for staying around.
What Makes Symptoms Worse? The wrong food. Weather, stress, pushing myself too hard, lack of sleep.
What Makes You Feel Better? When the nerves are pulsing too much in my body I take Xanax. This releases the pain but makes me very tired. Anything I take, supplements, etc. only offer temporary relief.
Do Your Symptoms Include Brain Fog? Yes, very much so. I find my short term memory is most effected. I'm sure there are microorganisms in my brain causing fishers.
How many years has it been since you developed the brain fog associated with fibromyalgia? About 17
Was Your Rate of Decline Fast? No but I did find the most severe of the symptoms happened after exposure to large amounts of fluoride.
Have You Tried Avoiding Dietary Fluoride? yes, I am off fluoride completely and have been for the past year. But the main symptoms of fatigue and nerve damage do not seem to go away.
Remedies Tried: All of Ted's remedies. In addition I am now on Doxycycline for a long term. Read some data regarding chlamydia, case studies, people in same condition recovering by taking doxycycline for a couple of years. Been on it for 3 weeks, not noticing much.
Your Theories: I know people who take antibiotics and antidepressants (such as Prozac) for long periods of time and never develop any conditions but I have also met people who by just taking an antidepressant for a month have chronic fatigue and other symptoms. What I found out is that the people who don't develop symptoms do not have an existing mutated herpes viral condition. It is the combination. Although I do not know which comes first. Sort of like the chicken and the egg. I know that my condition started after I was infected with chlamydia but I had heavy metals before the infection. I just didn't have symptoms. So your body can have toxins such as heavy metals, and still function but once a herpes mutation is introduced, that is when the conditions start. Just at this point how does one backtrack? In truth before a person is prescribed a drug, that person should be checked for any existing active mutated herpes virus. If the patient has an active herpes virus then drugs should not be prescribed that can make the condition become worse. This should include all medication containing fluoride.
Are We Missing Any Important Questions? I'd bet that people with these conditions don't know the viral infections in their bodies. Most assume that if a doctor hasn't told them that nothing exists. Maybe asking the people if they have had a thorough viral blood workup. Dismissing the existence of a virus doesn't help.
-------------------------------------------------------------------

3/22/2008
Name: Peggy
City: Orillia
State: Orillia, Ontario, Canada
Your Sex: Female
Where Were You Born? Newfoundland, Canada
Where Do You Live Now? Orillia, Ontario, Canada
How Long Have You Lived There? 7 years
Your Age? 49
How many years has it been since you developed your symptoms of fibromyalgia? 4 years ( I think) Really sick Aug/07
Your Age At Onset of Symptoms? 45 (first hospital visit for symptoms Aug/07)
What is Your Line of Work? Still working? Education. Yes, still working.
Medical History: Perfectly healthy. Had a cesearean section 27 yrs ago, had tympanoplasty 10 yrs ago. I have a normal low blood pressure, no heart, diabetes, blood pressure, etc problems ever. Past year, extremely tired, thirsty, gained 25 lbs - weight about 150 now at 5 ft. 2 in. Heaviest I've been in my life - has really taken a toll on me - very hard to lose. I've never had a weight problem and could drop 10 lbs. any time I wanted. Just thought it was my age and menopause.
Does Exercise Help? Very much. Walking, seimming, stretching exercises.
What Were Your First Symptoms? Severe neck pain, (diagnosed with spasmodic torticollis?????), carpal tunnel, hip pain, muscle spasms
What Are Your Current Symptoms? Pain in hips, and legs, mostly in upper back and esp. neck, 'fibro fog' (had to take a year off from a master's program), right hip only, lower back pain, irritable bowel, swollen hands/feet, serious sleep problems (not going into stage 4 sleep).....shocking, isn't it? Never been sick (with the exception of a flu/headache, etc)
Did You Ever Have A Long Lasting Virus? Not that I know of.
Any Military Service? No.
Chemical or Pesticide Exposure? Not sure.
How Has Fibro Affected Your Life? My husband and I have been through six month of hell. Mostly knowing that doctors didn't take this seriously at all - my family doctor just has minutes to see me - very, very quick - said there's no drug or nothing she can give me for fibro - but she can sedate me. True story. I've taken it upon myself to do three months of research - came acors Dr. jacob Teitelbaum and the Mayo clinic to find out how to help myself. Absolutely no help here in Canada except the supplements I'm taking is from Lorna Vanderhaghue of Canada - a nutritionist who sells her products in health food stores composed of magnesium, malic acid and celadrin. Also take her product thyrosense along with fibrosense. That and exercise is helping me tremendously. I'm a non-smoker, non drinker, lived a very productive life and a reasonably happy one - I was not depressed until I got sick!!! That, i"m sure of. This has hit me for some reason - I may never know but should I get well (and I intend to) I will write an article for every newspaper in Canada because I know many, many women are suffering needlessly. Canadian doctors need a lot more training because I blieve many more people will have this condition and will get no help from them if they do not have a clue how to treat fibomyalgia type diseases. They said there is no cure but I don't believe that for one second - there's got to be something. All the so called medical genius' in the world can't come up with a way to rid people of this debilitating disease? Don't buy it for a second - not important enough is my guess. Note: when I first entered emerg in Aug/07, my doctor diagnosed me with PMR (Polymyalgia Rheumatica) and treated me with prednisone for six months - that nearly killed me - it took that long to see the specialist and he told me I was misdiagnosed and should not have been put on prednisone but that the family dr. was doing what she thought best at the time. Prednisone is horrible - the side affects literally stole my life away - didn't make it to work for 19 days because of it-bringing financial stress along with everythint else! I know it sounds negative but this fibro has nearly ruined our lives.
What Makes Symptoms Worse? Lack of exercise, not eating properly, stress, etc. If I don't exercise (walk or stretch) every day, I feel very achy in my right hip, lower back and upper back and neck. Also, I've not eaten white bread, cakes, donuts, etc for 2 months now - huge difference. Cut out pop and most junk food. I think there may be a gluten connection to fibro as well.
What Makes You Feel Better? Again, exercise and healthy eating (fruits and vegetables). I also believe the supplements (mag/malic acid/thydone, etc) is what my body must have been lacking - since taking these, I'm coming out the other side.....slowly. A huge difference.
Do Your Symptoms Include Brain Fog? Very much so - I have a sharp mind - always have until this hit me last August (07). As I've said, I'm 4 courses away from a Master's in Education with a 85% average. My short-term memory has been affected - can't think to finish sentences, phrases, where something is, etc. A very scarry experience for me - I knew there was something wrong. Started throwing up as well when I was brought to emergency room - hospital thought it was a stroke, etc. What a farce! They just don't know about this fibromyalgia - they know of it but that's it. They really believe there is nothing that can be done for this condition. Education, eduaction and education is lacking here in the Canadian health profession. All my help came from the U.S. - that's one thing I will stress when I write my paper!!!
How many years has it been since you developed the brain fog associated with fibromyalgia? The brain fog was for a short time - I'm still experiencing a little, I feel but getting much better every day. I will go back to my Master's program in September of 2008 - I guess I'll see how well I really am then.
Was Your Rate of Decline Fast? Yes, I did. I can't remember but I will certainly do a thorough check on that! I've been reading this website and surprised about floruide....can it be? Anyway, I intend to go back and see if I was taking anything. But, I have to say, I rarely have had prescriptions - I was a healthy woman with zest and enthusiasm for life. I have a fantastic husband - don't know where I'd be right now without his support. I can't imagine how people who are poor and those without support, good medical plans, etc.could possibly get through this. It is so disturbing that many people will never get the help they deserve and need.
Have You Tried Avoiding Dietary Fluoride? No, but I intend to educate myself on dietary flouoride exposre. I need to know exactly what to avoid. I found some on this website - the only thing I can think of is that I use Crest toothpaste - I'll be sure to look for the fl ingredient in everything now! Thank you so much for that - it's worth checking into, for sure.
Remedies Tried: NO MEDICATIONS! I just don't believe in drugs for most things. So far, the past two months, I've been on fibrosene, thyrosense (from Lorna Vanderhaeghue-she has a website also), I take thyodine, Vitamin D, eat lots of fruit and vegetables, gave up all pop, white sugar in my tea, I drink only herbal teas, V8 juice and lots of water - not distilled so I need to check into the water I'm drinking since I drink a lot of water and always have. I'm starting to read ingredients in foods/drink for the first time in my life - it's quite a lifestyle change but one for the better, I know. I've downloaded your information for my husband to read - he keeps up with my research and together we are determined to enjoy our retirement - TOGETHER! I will keep in touch with this website - have been researching Dr. Jacob Teitelbaum - he's really on to something, isn't he?
Your Theories: Oh boy - I can't get over the fact that I have fibromyalgia! I just can't understand why I would get this! I've always eaten fairly healthy - not much different than I'm eating right now so how is it that my body was not getting the nutrition? What happened to my cells function? What did I do? My husband really believes now that a fall from a chair while cleaning a window about 4 years age triggered this so called fibromyalgia. I have not been the same since that fall - I fell off a chair on the flat of my back - been crippling with it ever since. Sent for x-rays - normal - doctor kept telling me it was arthritis - I never did belive that! Going to her was really a waste of my time so I just didn't go back to her. About a year after that fall, I ended up in emergy - head turned to the right and couldn't move - diagnosed with apasmodic torticollis - then I ended up in this sate of fibro - I think it's all connected. The rheumatologist explained to me causes such as a car accident, abuse as a child, etc - I fit into none of these categories. I just don't get it. However, once I was told they were sure it was fibromyalgia (18 out of 18 trigger points), I then realized I had to find a way to help myself....and I think I did. Hope it's not too early to say that - not sure if fibro flares up or not - I'm feeling better every day, getting stronger and determined to get this out of my body. Thank you for this information - will probably use it for the paper I intend to write that may one day help someone else! I am in shock at how little was done for me - I can imagine other people's stories. It's just not good enough. Again, thank you for this insightful and helpful website - please keep it going - it is so important!
Are We Missing Any Important Questions? Yes. I am smack-dab in the middle of menopause. Haven't had a period since June/07 - got very sick in Aug/07 and ended up in emerg. Would menopause have anything to do with my body and hormones changing? Could menopause have brought this conditon on? My night sweats have disappeared since I started my regimen of diet/exercise and supplements. Could be a coincidence but I'm just not sure.
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3/22/2008
Name: Denise
City: Didcot
State: UK
Your Sex: Female
Where Were You Born? Carshalton, Surrey, Uk
Where Do You Live Now? Didcot, Oxfordshire, Uk
How Long Have You Lived There? 18 years
Your Age? 55
How many years has it been since you developed your symptoms of fibromyalgia? pain - about 6 years
Your Age At Onset of Symptoms? 49
What is Your Line of Work? Still working? Still working. Benefits advisor
Medical History: hysterctomy - 44 asthma since 16 broncial problems sinc a child broke arm badly 4 years ago
Does Exercise Help? not normally - increases pain
What Were Your First Symptoms? in retrospect brainfog
What Are Your Current Symptoms? Pain in various parts of body which can move or subside within 1/2 anhour and then another pain starts. Dry eyes. Tiredness
Did You Ever Have A Long Lasting Virus? no
Any Military Service? none
Chemical or Pesticide Exposure? none
How Has Fibro Affected Your Life? exhausted therefore no energy to do anything. Managing to still work but that leaves no energy for anything else
What Makes Symptoms Worse? exercise. stress.
What Makes You Feel Better? amitriptylene has helped reduce pain and tiredness. Acupuncture
Do Your Symptoms Include Brain Fog? yes. I have for a long time muddle words - spoken/typed wrong word i.e. a roundabout was called an airport one day. Forgetfulness - cant remember peoples names
How many years has it been since you developed the brain fog associated with fibromyalgia? 12 years approximately
Was Your Rate of Decline Fast? no
Have You Tried Avoiding Dietary Fluoride? no
Remedies Tried: doctor providing acupuncture
Your Theories: No just good to know I wasnt going mad
Are We Missing Any Important Questions?
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3/22/2008
Name: Erica
City: Lakewood
State: CA United States
Your Sex: Female
Where Were You Born? Bellflower California
Where Do You Live Now? Lakewood California
How Long Have You Lived There? 33yrs
Your Age? 38
How many years has it been since you developed your symptoms of fibromyalgia? At least since 1998/after the birth of my 2nd child
Your Age At Onset of Symptoms? 28
What is Your Line of Work? Still working? Optometric Assistant,Contact Lens Tech.Wood finisher. Can't work/SSDI
Medical History: Sjogren's syndrome,3 c-sections, ectopic pregnancy,removal of gangleon cyst,ADD,Depression
Does Exercise Help? yes,but i'll feel good and then 2-3 sessions and i'm don for 2-7 days. only walking on tredmill,
What Were Your First Symptoms? It's so hard to tell,but fatigueso tired breathing/talking felt like it was too much,waking up in the morning feeling like i'm 97 yrs.old can't move or lift head off of pillow, hair loss. Swollen hands and feet, tingling numbness, gripping weird feeling(fatigue/weakness)in arms,hands,legs,feetmuscle spasms,trouble sleeping w/ or w/out pain.So many more.
What Are Your Current Symptoms? I have days that are still the same,but abuzzing feeling like an electrical current is going thru my body. my arms and finers move on they're own or they don't do what i want them to, dead arm sensation, forgetfulness, trouble lking or moving legs, tight muscles in calfs,feet,heels, most days it's the fatigue. i can't get past it.
Did You Ever Have A Long Lasting Virus? not that i know of.
Any Military Service? none
Chemical or Pesticide Exposure? not too much
How Has Fibro Affected Your Life? Oh my gosh! Fibro has completely changed most everything. i use to very be very organized,multi-tasked & in the know & now knowing what day it is is a challenge, i stay in the house most of the time(up 90 days @ a time)I don't play outside / my kids. Hard to be the mommy i use to be before i got sick.Huge water sports fan,but hen e go to Lake Havasu no I will play it tuff for the kids and knee board / them for a bit,but i pay up to a week or more for it. It's the only time the pain is worth it.
What Makes Symptoms Worse? menstration,stress,no sleep.too much exercise,fast paced days,my 3 beautiful children
What Makes You Feel Better? I take 200mg plaquenil x2 aday, 10mg methotrexate once a week,my husband understanding,our 3 beautiful children(Alyssa13,Brenden9, Troy5) being in the direct sun for short periods of time.
Do Your Symptoms Include Brain Fog? Brain fog is bad. I just said to my husband tonight that when i don't hurt i still have this annoying brain fog. i'm lost and don't know what to do.
How many years has it been since you developed the brain fog associated with fibromyalgia? 2000. 8 years at least
Was Your Rate of Decline Fast? i stated taking adderall 02/2002,but i as already having symptoms. i guess it could have made them worse. I still take it,but in a smaller dose.
Have You Tried Avoiding Dietary Fluoride? no
Remedies Tried: mona vie,fish oil,physical therapy,walking,methotrexate,plaquenil,prednisone.
Your Theories: Trying to learn to live w/these diseases still eludes me. i took prednisone last summer for 4 months and all it did as help me gain 25lbs.The combo of Plaquneil and methotrexate have done the best for me.The main side effect fom the metho that i notice is it makes me Extra tired the day i take it and part of the day after,but the benifits so far orth the extra fatigue for now. I am sure i'm for getting lots of things to say,but that seems to go along w/ the disease.
Are We Missing Any Important Questions? have you or do you now have any symptoms you think aren't related to Fibro?
------------------------------------

3/21/2008
Name: Michelle
City: Oxford
State: CT
Your Sex: Female
Where Were You Born? Connecticut
Where Do You Live Now? Connecticut
How Long Have You Lived There? 17 years in this house
Your Age? 41
How many years has it been since you developed your symptoms of fibromyalgia? 7
Your Age At Onset of Symptoms? 36
What is Your Line of Work? Still working? Just began working part-time
Medical History: hypothyroidism hypoadrenia EBV+
Does Exercise Help? Gentle Movement in short periods. No strength training or other strenous exercise helps, and actually makes it worse
What Were Your First Symptoms? overwhelming exhaustion
What Are Your Current Symptoms? Some fatigue, muscle aches,chronically tight muscles, muscle spasms/knots, inability to hold a chiropractic adjustment, some mild brain fog from time to time, depending on the weather
Did You Ever Have A Long Lasting Virus? Not that I know of, but I did test positive for EBV.
Any Military Service? no.
Chemical or Pesticide Exposure? unknown.
How Has Fibro Affected Your Life? Unable to work full-time, unable to enjoy activities that I used to enjoy (horseback riding, gardening), inability to play with and enjoy my children (ages 11 and 6)
What Makes Symptoms Worse? Barometer drops, menstrual cycle, stress, heavy exercise, eating junk foods
What Makes You Feel Better? fresh air, sunshine, no stress,
Do Your Symptoms Include Brain Fog? yes
How many years has it been since you developed the brain fog associated with fibromyalgia? Brain fog began around 1994 or so, was diagnosed with hypothyroidism around 1995. Brain fog diminished, and returned again around 2001 with a vengence.
Was Your Rate of Decline Fast? No, it was very slow and insidious.
Have You Tried Avoiding Dietary Fluoride? Yes, always. I never use fluoride toothpaste for many years (15+), do not drink fluoridated water
Remedies Tried: Too numerous to state them all, but mostly Armour thyroid, Cortef, and magnesium have made the biggest changes
Your Theories:
Are We Missing Any Important Questions?
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3/21/2008:
Name: aye
City: singapore
State: singapore
Your Sex: female
Where Were You Born? myanmar
Where Do You Live Now? singapore
How Long Have You Lived There? 15 yeara
Your Age? 46
How many years has it been since you developed your symptoms of fibromyalgia? 10
Your Age At Onset of Symptoms? 36
What is Your Line of Work? Still working? pharmacy technician
Medical History: anamia
Does Exercise Help? aerobic
What Were Your First Symptoms? lost weight palpitation
What Are Your Current Symptoms? hypertension, weight gain
Did You Ever Have A Long Lasting Virus? no
Any Military Service? nil
Chemical or Pesticide Exposure? yes 6 year ago
How Has Fibro Affected Your Life? not really
What Makes Symptoms Worse? giddiness
What Makes You Feel Better? meditation
Do Your Symptoms Include Brain Fog? no
How many years has it been since you developed the brain fog associated with fibromyalgia? nil
Was Your Rate of Decline Fast? no
Have You Tried Avoiding Dietary Fluoride? nil
Remedies Tried: apple cider, thyroxin
Your Theories: no
Are We Missing Any Important Questions? no
-----------------------------------

3/20/2008:
Name: Shelly
City: Santiago
State: Chile
Your Sex: female
Where Were You Born? Cleveland, Ohio, U.S.A
Where Do You Live Now? Santiago, Chile, South America
How Long Have You Lived There? since December 2006
Your Age? 26
How many years has it been since you developed your symptoms of fibromyalgia? since December 2005
Your Age At Onset of Symptoms? 25
What is Your Line of Work? Still working? Was in psychology- suicide prevention and hospital intake when the symptoms came on- yet was walking too much to continue there with the debilitating pain. I stopped working for a month to rest, and then switched to a law firm office job for the next year due to not being able to walk long distances or stand a lot. When I moved to Chile- still having debilitating symptoms- I took 6 months off work to rest, and then I started teaching English when I could walk a little more, and now am also a relaxed receptionist.
Medical History: No major problems.
Does Exercise Help? Excersice that does not put pressure on the joints or prolonged pressure on the tendons. Swimming is great, and Yoga. Now, thankfully, I can even dance sometimes.
What Were Your First Symptoms? Waking up with knee pain after going out for drinks with friends. Then continuing to run with pain. One week the pain never went away- and I could not stand by the end of the week.
What Are Your Current Symptoms? I have seen a Chiropractor consistently within the past year who was diff than those in the States. He does SacroSipital Technique I think it's called. I have healed tremendously, and therefore just have really sensitive tendons now that can be strained by walking or turning too briskly. Oh yeah, and I broke out in SEVERE acne that is only now starting to go away, leaving huge scars and pit- I think due to the stress.
Did You Ever Have A Long Lasting Virus? No
Any Military Service? No
Chemical or Pesticide Exposure? Don't think so.
How Has Fibro Affected Your Life? Not sure that that is what I have exactly. Diff Drs. have told me tons of different things. I believe it could have been the cause of a tooon of things...stress, previously using high heels, some type of toxin somewhere, or allergy that I came into contact in...or a car accident in 2002 that unknowingly knocked my hips and spine out of place- which after months of healing from whiplash- I started running long distance on again- causing unequal bad pressure on my knees. I have been told I have fibro though too along with patellafemoral syndrome- or runners knee.
What Makes Symptoms Worse? Walking too long of distance, running, not sleeping enough, quick flimsy movements to the tendons, cold weather
What Makes You Feel Better? regular exercise to keep it warmed up- but just not too harsh, sleeping a full night, heat or cold if it is really bad- but hasn't been in a while. I used to use icy-hot. They ached at first even when I wasn't using them- and then not using them calmed the pain down.
Do Your Symptoms Include Brain Fog? I think this has been an occasional problem throughout. I def can't think if I am very hungry! :)
How many years has it been since you developed the brain fog associated with fibromyalgia? Not sure.
Was Your Rate of Decline Fast? Yes! Exactly!- What a surprise! Not sure of any drugs. I think I did start going to an allergist previously though, since I started to develop extreme fatigue, making it difficult to do my work, and all the sinus symptoms and bloating of allergies very extreme all the sudden one season. I took allergy pills day and night I think, and was getting shots to develop immunity also. I also had the birth control of the IUD implanted.
Have You Tried Avoiding Dietary Fluoride? Not really sure how in-depth I have to be, but I was using a water filter to drink my tap water.
Remedies Tried: After the 2002 car accident I tried tons of muscle relaxers. Celebrex, oxycoton, IB profin and used them for about 4 months.
Your Theories: I told you all the theories already. :)
Are We Missing Any Important Questions? I think what I was eating would be relevent. I was kind of a health-nut, that's why it surprised sooo many people. I tried to eat a lot of organic foods, fruits and veggies, and just really cut the sugar and fat. I did use a protein shake mixture in the morning -the natural one from Optimum Nutrition that might have had some bad magnesium or something in it. Not sure. Yet, I was aaaaaalways really into excercise and being healthy before too, running cross country, track, lifting weights- all since the age of 13- all taken away, but that I would have though provided a good healthy base. Yet, one other suspicion I have is if I didn't hurt the tendons in the gym somehow. Who knows, like I said before- could be one of or a ton of a ton of things!! Thanks for reading my life- haha! Hope this helps! :)
----------------------------------------------

3/20/2008
Name: Vicky
City: Dansville
State: New York
Your Sex: female
Where Were You Born? Dansville
Where Do You Live Now? Dansville
How Long Have You Lived There? 20+ years
Your Age? 41
How many years has it been since you developed your symptoms of fibromyalgia? 8, year 2000 I stoped workbecause of this.
Your Age At Onset of Symptoms? 35
What is Your Line of Work? Still working? grocery store clerk, overnight manager, not currently working
Medical History: several surgeries, gall bladder, appendix, tonsils and ganglion cysts on both thumbs, and shoulder surgery after a car accident.Asthma since 16, allergies.
Does Exercise Help? no, in fact makes it worse, with visible muscle spasms. Walking usually well tolerated if on a flat surface, up or down hills I pay for a week or more.
What Were Your First Symptoms? muscle pains in my shoulders and upper arms, frankly I thought I was having the classic male heart attack except pain was in both arms and both sides of jaw. I was also having muscle spasms in my stomach muscles. Lower where the ligaments support the uterus, GYN said that my supporting walls were like brick, he could not feel any thing the spasms were so bad.
What Are Your Current Symptoms? Pain from base of scull to ankles, New pain in lower legs and ankles just in last few months. Thought that I may be having circulation problems. no just fibro.
Did You Ever Have A Long Lasting Virus? This cold has hung on for almost 8 weeks and is going strong. Just cannot kick it.
Any Military Service? none
Chemical or Pesticide Exposure? Chem class in school and college, helping my dad fix it around the house when I was younger, Lead in water pipes and I helped make shot for black powder season.
How Has Fibro Affected Your Life? Made every thing more difficult, I cannot even wrestle with the 3 boys unless I am feeling exceptional and I don't have any thing pressing for the next few days. I have even put off dr visits because I didn't trust myself to drive and no one else could take me.
What Makes Symptoms Worse? almost any activity that uses muscle strength, sometimes even brushing my hair is beyond my grasp.
What Makes You Feel Better? warmth, water as long as it is body temp or warmer, warm summer days but not to humid, air temps of 75 to 85 if dry, 70 to 80 if humid.
Do Your Symptoms Include Brain Fog? Yes much of the time I have to rely on written notes especially if there is something that has to be done that day
How many years has it been since you developed the brain fog associated with fibromyalgia? I believe I started the fog even before the pain. My mother in law who now has alshiemers used to joke that we both had CRS "can't remember sh*t" and that started about 30.
Was Your Rate of Decline Fast? Yes, and the only drugs that were taken were during and after surgeries, and because of asthma and diabetes.
Have You Tried Avoiding Dietary Fluoride? We have well water, no fluoride, but I was given the baby drops with fluoride until I was 5
Remedies Tried: No remedies and ultram and cyclobenzeprene put me to sleep for a few hours to a couple of days depending on the dosage. I try not to use them because I have the floaty feeling that is associated.
Your Theories: Fibro and arthritis sucks majorly!!
Are We Missing Any Important Questions? No just an answer, "How do we cure this monster?"
--------------------------------------------

3/19/2008
Name: Leslie
City: Bellevue
State: Nebraska, USA
Your Sex: Female
Where Were You Born? Worcester, Massachusetts
Where Do You Live Now? Bellevue, Nebraska
How Long Have You Lived There? 10 years
Your Age? 62
How many years has it been since you developed your symptoms of fibromyalgia? 15
Your Age At Onset of Symptoms? 47
What is Your Line of Work? Still working? Ministry, yes
Medical History: Spinal cord injury Osteo and rheumatoid Arthritis 5 X cancer survivor Kidney problems (near faiure) Astrhma Bronchitis Gall bladder removal Tonsilectomy Appendix hear loss Migraines Fractured Hips Broken Knees
Does Exercise Help? I am in a wheelchair
What Were Your First Symptoms? Pain in places I never had pain before and really bad also very tired from trying to fight against it most of the time.
What Are Your Current Symptoms? same only getting worse and I feel like my neck and chest cavity want to collapse . They throb so badly and that is just there. Never mind the hip, legs and feet.even in my butt
Did You Ever Have A Long Lasting Virus? Not sure
Any Military Service? US army 1 year due to spinal cord Injury
Chemical or Pesticide Exposure? Army - Agent Orange (Which they deny) mustard gas (Which they also deny). Asbestos and Lead based paint when I was growing up
How Has Fibro Affected Your Life? Limits me to havin only one of two places I can sit, and forces me to lay down afte a while just o seek some relief. Affects my sleep, so I hardly sleep at night.
What Makes Symptoms Worse? Well this is a tough one. Just moving can do it and I would also have to say that after having 14 kidney operations in less than three months changed my whole world because it aggrevated the fibromyalgia even more so. I have never been so limited in what I ca ndo as I have been since because the pain becomes so unbearable.
What Makes You Feel Better? Lyaing down sometimes, pain patches (Lidocain 5% patches, Vicodin. I must tell you that none of these make the pain an easier to deal with , so mostly I am in a battle with my body convincing it it doesn't hurt.Doesn't always work though. Also Prayer helps
Do Your Symptoms Include Brain Fog? If you are referring to Short term memory - yes or where you just can't think or even remember 2 seconds later what someone just said to you - yes or hearing them but it not sinking in so it si like you never heard them - yes.
How many years has it been since you developed the brain fog associated with fibromyalgia? 5 years
Was Your Rate of Decline Fast? no this came on gradually and never left. It "added" itself to all my other health issues.
Have You Tried Avoiding Dietary Fluoride? What are you talking about?
Remedies Tried: heat, pain patches, Vicodin, resting by laying down.
Your Theories: wish I did. If I did then I could make this all go away.It is hindering my life and I am not happy about it.I am sick of being tired and in pain all the time. It is bad enough to have to live in pain from a spinal cord injury and arthritis since I was 20. The last thing I needed was this. The only thing I can say is that it got worse after the 14 kidney operations I had from October - December of 2006. Figure it out
Are We Missing Any Important Questions? Ya. Is there a cure? I would like my life back to where it was before all this!
-------------------------------------------------------

3/19/2008
Name: Betty
City: Bucyrus
State: Ohio
Your Sex: Female
Where Were You Born? Michigan
Where Do You Live Now? Ohio
How Long Have You Lived There? three years
Your Age? 42
How many years has it been since you developed your symptoms of fibromyalgia? six
Your Age At Onset of Symptoms? 36
What is Your Line of Work? Still working? Homemaker
Medical History: Depression,chronic pain,ibs,itching,muscle pain, back,legs,arms,jaw,chest.
Does Exercise Help? No
What Were Your First Symptoms? neck
What Are Your Current Symptoms? Depression,chronic pain,ibs,itching,muscle pain, back,legs,arms,jaw,chest.
Did You Ever Have A Long Lasting Virus? no
Any Military Service? no
Chemical or Pesticide Exposure? cleaning materials
How Has Fibro Affected Your Life? family issues and move abitity.I can't work.
What Makes Symptoms Worse? stress,and moving
What Makes You Feel Better? rest,and water
Do Your Symptoms Include Brain Fog? yes
How many years has it been since you developed the brain fog associated with fibromyalgia? six
Was Your Rate of Decline Fast? yes,no
Have You Tried Avoiding Dietary Fluoride? no
Remedies Tried: narcotics,inflamatory
Your Theories: who gets punished for this, me or others with the disease, or no one, what about the one's that caused the disease.
Are We Missing Any Important Questions?
----------------------------------

3/17/2008
Name: capri
City: nasvhille
State: tn usa
Your Sex: female
Where Were You Born? hawaii
Where Do You Live Now? tennessee
How Long Have You Lived There? 5 years
Your Age? 19
How many years has it been since you developed your symptoms of fibromyalgia? 2
Your Age At Onset of Symptoms? 17 had severe growing pains through childhood
What is Your Line of Work? Still working? college
Medical History: mono strep throat cmv
Does Exercise Help? not that I know off,would like to try swimming at the gym
What Were Your First Symptoms? lower back/hip pain neck pain fatigue, just aching all over
What Are Your Current Symptoms? the same
Did You Ever Have A Long Lasting Virus? mono and cmv strep for 3 months when 17 just wouldn't go away even with anitbiotics
Any Military Service? military brat until 15 when dad retired
Chemical or Pesticide Exposure? not that im aware of
How Has Fibro Affected Your Life? friends question you always being sick missing things from being in pain and exusted most of the time
What Makes Symptoms Worse? not getting enough rest. stress walking all over campus with books etc heavy back pack
What Makes You Feel Better? resting/sleeping, massage's, being in water,warm baths
Do Your Symptoms Include Brain Fog? I don't really consider it brain fog I'm ok if I get enough sleep although sometimes the pain is to much to get good sleep
How many years has it been since you developed the brain fog associated with fibromyalgia?
Was Your Rate of Decline Fast? anitibiotics,minocycline,amoxicillian,fluoxetine,
Have You Tried Avoiding Dietary Fluoride? no
Remedies Tried: prednisone shots in back,cymbalta,methylprednisoline 4 mg pk,motrin aleve,advil, I was given loratab after surgery and it was the most pain free I have been since this started, but I don't like to take pills and it wasn't prescribed for this problem and am affraid and don't want something that strong as it is addictive.
Your Theories: Things got much worse after the mono/cmv also I smoke and wonder if that could effect things.just got chantax and am trying to quit. I've been seeing a rhematoligist for over a year they where trying to rule out lupus and rhematoid arthritus just switched drs the new one thinks it is fibromyagia and prescribed cymbalta which made the pain worse so stoped that. one theory is that lupus can be triggered by smoking so wonder if it could also trigger this.
Are We Missing Any Important Questions? Do the people on here smoke,or have they in the past? If it can possibly trigger lupus could it trigger firbomyalgia
---------------------------------------------------------------------------------

3/17/2008
Name: angela
City: bribane
State: australia
Your Sex: female
Where Were You Born? england
Where Do You Live Now? australia
How Long Have You Lived There? 36 years
Your Age? 62
How many years has it been since you developed your symptoms of fibromyalgia? mixed with lupus and sjgrones syndrome, maybe 20 years
Your Age At Onset of Symptoms? 42
What is Your Line of Work? Still working? on disability pension
Medical History: lupus,tumour in thyroid (benign) sjgrones syndrome
Does Exercise Help? walking swimminggentle movement
What Were Your First Symptoms? joint and muscle pains fatigue tenderness tmj
What Are Your Current Symptoms? as above with restless legs brain fog headaches ibs most pain at night lack of good sleep hiatus hernia osteoporosis and osteoarthritis,dry eyes and mouth
Did You Ever Have A Long Lasting Virus? no
Any Military Service? no
Chemical or Pesticide Exposure? no
How Has Fibro Affected Your Life? i left the work force early
What Makes Symptoms Worse? inactivity...rest at night, lack of good sleep
What Makes You Feel Better? rare occaisions of good sleep
Do Your Symptoms Include Brain Fog? yes
How many years has it been since you developed the brain fog associated with fibromyalgia? 6 years i think
Was Your Rate of Decline Fast? no
Have You Tried Avoiding Dietary Fluoride? no
Remedies Tried: celebrex,placquinel,prednesone,endep,tramal tegretol, somac,panadine forte,glucosamine vitamine b complex calcium supplements fosamax plus catia
Your Theories: as I was first dianosed with sle lupus and sjgrones syndrome then fibromyalgia symptons are all so similar its hard to know which is causing it
Are We Missing Any Important Questions?
----------------------------------------------------

3/16/2008
Name: Antoinette
City: Seattle
State: WA
Your Sex: Female
Where Were You Born? Seattle
Where Do You Live Now? Seattle
How Long Have You Lived There? 50 years
Your Age? 50
How many years has it been since you developed your symptoms of fibromyalgia? 21
Your Age At Onset of Symptoms? 29
What is Your Line of Work? Still working? No, Marketing Manager
Medical History:
Does Exercise Help? walking when able
What Were Your First Symptoms? chronic fatigue, sore throat, daily migraines, muscle tenderness/achiness
What Are Your Current Symptoms? muscle tenderness/achiness, sore throat, severe chronic fatigue, CRPS, TOS
Did You Ever Have A Long Lasting Virus? yes
Any Military Service? no
Chemical or Pesticide Exposure? no
How Has Fibro Affected Your Life? yes
What Makes Symptoms Worse? damp weather
What Makes You Feel Better? warm weather, getting good sleep at night, mild exercise
Do Your Symptoms Include Brain Fog? yes
How many years has it been since you developed the brain fog associated with fibromyalgia? 20
Was Your Rate of Decline Fast? yes, neurontin
Have You Tried Avoiding Dietary Fluoride? no
Remedies Tried: a multitude of western medicines, meditation, biofeedback, physical therapy
Your Theories: living in a damp client, it is a definite that the fibromyalgia will wax and wane with the weather conditions here
Are We Missing Any Important Questions?
-----------------------------------------------

3/16/2008
Name: Ronni
City: Tacoma
State: Washington
Your Sex: Female
Where Were You Born? Puyallup
Where Do You Live Now? Tacoma
How Long Have You Lived There? all my life
Your Age? 27
How many years has it been since you developed your symptoms of fibromyalgia? we believe it started @ 15 diagnosed @22
Your Age At Onset of Symptoms? 13-15
What is Your Line of Work? Still working? done various work, but no longer working days of extreme pain are untolerable
Medical History: strep throat almost every year, appentectomy, severe anxiety and panic attacks..migranes since started my period at 13, leg pains (throbbing all over or stabbing radiating up and down in all areas or the pain bounces around..arm pain and extreme pain from knots all over in different areas..cause severe burning behind my shoulder blades and in between my hip bones and feet
Does Exercise Help? STRETCHING HURTS BUT IT HELPS TO ELEVEATE THE TENSION, BUT I DO EXCERSISE TO SUPPORT MY BODY, IT HURTS AND MAKES ME IRRITABLE THOUGH
What Were Your First Symptoms? UNEXPLAINABLE PAINS EVERY WHERE, HORRIBLE FEELINGS, SCRAPPING AND STABBING, JUST UNEXPLAINABLE ALMOST LIKE YOUR UNDER ATTACK..SOUNDS SILLY BUT IT WAS SO DIFFERENT ALL THE TIME I DIDNT SAY MUCH FOR YEARS CAUSE I WOULD OF SOUNDED LIKE I WAS WHINNING..I JUST COULD TOLERATE IT MORE WHEN I WAS YOUNGER
What Are Your Current Symptoms? EVERY THING!!!! IT HURTS EVERY WHERE, ALMOST EVERYDAY ITS DIFFERENT, I COULD WRITE A BOOK ON THE PAINS..MUSCLE TWICHING, TENSION, REOCCURING KNOTS EVERYWHERE, RADIATING PAIN THROUGH LEGS AND ARMS THE MOST..PAIN IS DIFFERENT AND BOUNCES AROUND.. WHEN I GET SICK FROM COLD OR FLU ITS HORRIBLE I GET NO RELIEF UNTIL I GET OVER THE ILLNESS AND THEN ITS BACK TO THE NORMALY IRRITATING PAINS..REALLY BAD DURING THE COLD WEATHER AND I DONT UNDERSTAND WHY
Did You Ever Have A Long Lasting Virus? JUST STREP THROAT ABOUT ONCE A YEAR
Any Military Service?
Chemical or Pesticide Exposure? NONE THAT I KNOW OF
How Has Fibro Affected Your Life? DONT HAVE MUCH OF ONE..I AM EXTREMELY BRAVE ABOUT THE PAIN UNTIL MY KIDS GO TO BED (DONT WANT THEM TO BE EFFECTED SO I AM VERY BRAVE UNTIL THEY GO TO BED AND THEN MY NIGHT IS REAL ROUGH...I TAKE PAIN MEDS AND THAT HELPS BUT I STILL FEEL THE PAIN
What Makes Symptoms Worse? DOING TOO MUCH, THE COLD WEATHER WIND, RAIN, SNOW, BEING SICK
What Makes You Feel Better? NOT TOO MUCH, BUT I DO ALOT OF PUSHING ON PRESSURE POINTS REALLY HARD..I CAUSE BRUISES BUT IT HELPS SOMETIMES..PAIN MED AND LOTS OF STRETCHING...HEATING PADS AT A LOW HEAT HELP WITH SOME AREAS
Do Your Symptoms Include Brain Fog? I WOULD HAVE TO SAY YEA, BUT ITS ALMOST LIKE YOU ARE EMOTIONALY DRAINED BECAUSE THE PAIN IS SO IRRITATING ITS LIKE IT STEALS YOUR ATTENTION AND DRAINS YOU WITHOUT EVEN BEING ACTIVE.
How many years has it been since you developed the brain fog associated with fibromyalgia? IM NOT SURE, BUT IT STARTED GETTING WORSE WHEN I WAS ABOUT 18-21
Was Your Rate of Decline Fast? NOT REALLY BUT IT DID GET WORSE THROUGH MY PREGNANCIES AND ALMOST AS I GOT OLDER
Have You Tried Avoiding Dietary Fluoride? NEVER TOOK IT..AND I DONT DRINK ALOT OF TAP WATER.BUT I DRINK ALOT OF WATER THROUGH THE DAY, NEVER TOOK EXTRA FLUORIDE
Remedies Tried: LEXAPRO (ANXIETY), ATIVAN, OXYCODONE, OXYCOTIN, VICODAN, TEAS (CHAMOMILE) VITAMINS, CALCIUM, MAGNESIUM, ALOE VERA JUICE, JUICING ALL TYPES OF FRUIT AND VEGGIES, IVE TRIED ALOT
Your Theories: IM NOT SURE WHAT CAUSES THESE MYALGIAS BUT I HAVE TO SAY THAT ITS HORRIBLE THING TO GO THROUGH AND LIVE WITH...I AM NOT SOMEONE WHO JUST SITS AND TREATS THE SYMTOMS JUST WITH NARCOTIS PAIN MEDS, (ALTHOUGH THEY SEEM TO BE THE ONLY THING THAT WORKS THE BEST)..ITS LIKE YOUR BODY IS RUNNING AT FULL SPEED EVEN WHEN YOU ARE NOT..I HOPE THAT SOMEDAY IT IS MORE TREATABLE..AND I THINK IT IS IMPORTANT TO FIND OUT WHAT CAUSES IT AND CAN HELP OUR CHILDREN TO PREVENT FROM GETTING IT.. I DONT WISH IT ON ANYONE
Are We Missing Any Important Questions? DONT THINK SO... AND I THINK ITS GREAT THAT SOMEONE IS TRYING TO FIND OUT WHAT WE FEEL ABOUT THIS AND IS DOING THEIR BEST TO HELP...THANKS
---------------------------------------

3/16/2008
Name: LInda
City: Strongsville
State: Ohio
Your Sex: female
Where Were You Born? ohio
Where Do You Live Now? strongsville
How Long Have You Lived There? 1 1/2 years
Your Age? 60
How many years has it been since you developed your symptoms of fibromyalgia? several years
Your Age At Onset of Symptoms? 50's
What is Your Line of Work? Still working? assist teacher customer service
Medical History: soareness, very tires all the time dr. said i may have sleepapeana also otherwise in good health, fatigue sciatic trouble
Does Exercise Help? some walking after a while
What Were Your First Symptoms? fatigue, dr. could not find anything wrong such as blood sciatic trouble
What Are Your Current Symptoms? fatigue, not sleeping through the night, always tires it seems, soreness in back, sciatic trouble pain management dr said he feels i have sleep apeana and fibromyalgia
Did You Ever Have A Long Lasting Virus? no
Any Military Service? none
Chemical or Pesticide Exposure? no
How Has Fibro Affected Your Life? always tired, cranky sore
What Makes Symptoms Worse? not enough sleep, stress
What Makes You Feel Better? less stress
Do Your Symptoms Include Brain Fog? yes
How many years has it been since you developed the brain fog associated with fibromyalgia? it seems forever
Was Your Rate of Decline Fast? no
Have You Tried Avoiding Dietary Fluoride? no
Remedies Tried: st. johns wort rhodiola
Your Theories: no
Are We Missing Any Important Questions? no
-------------------------------------

3/14/2008:
Name: Kelli
City: Fortuna
State: CA
Your Sex: Female
Where Were You Born? Los Angeles
Where Do You Live Now? Fortuna, CA
How Long Have You Lived There? 3 yrs
Your Age? 42
How many years has it been since you developed your symptoms of fibromyalgia? 17
Your Age At Onset of Symptoms? 25
What is Your Line of Work? Still working? Saw Mill NO
Medical History: healthy, except for painful cysts in my breast.
Does Exercise Help? Swimming
What Were Your First Symptoms? muscle spasms
What Are Your Current Symptoms? muscle spasms irritable bowl chronic pain in specific tender points. brain fog unable to sleep
Did You Ever Have A Long Lasting Virus? I had strep throat continously as a child. Also hospitalized & treat with antibiotics for an unknown ilness the year before onset of condition. I also cannot take penicillin.
Any Military Service?
Chemical or Pesticide Exposure?
How Has Fibro Affected Your Life? Fibro has affected my life tremendously. I was put on anti-depressents for 2 years, which I refuse to be on now. I am in chronic pain every day & have been taking pain meds & muscle relaxants for the last 17 years.
What Makes Symptoms Worse? Traveling long distance, sitting for long periods of time. Climbing stairs or ladders, to much walking.
What Makes You Feel Better? Pain medication, ice, chiropratic care and massage.
Do Your Symptoms Include Brain Fog? Yes
How many years has it been since you developed the brain fog associated with fibromyalgia? I noticed getting brain fog the second year of developing fibro.
Was Your Rate of Decline Fast? Yes, I remember being hospitalized and recieving antibiotics, but I do not know what type.
Have You Tried Avoiding Dietary Fluoride? no
Remedies Tried: vicodin, soma, celebrex flex-all, Dimethyl Sulfoxide
Your Theories: Now that I have started doing research, I have also found in my research that the cysts that are in my breasts and cause me so much pain has been linked to women lacking in Iodine deficiancy, probably caused by the same thing.
Are We Missing Any Important Questions? I actually had an industrial accident that triggered the onset of this as well. This may be something else you may want to ask. What can you do to help get more information out to rural health care providers who still have no clue as to what Fibro is & still think that it is a fantasy illness. I moved from a major city where I grew up (Sacramento)to a rural area where the only information I can get is from the internet. Not from any doctor, out of the 5 that I have gone thru in the last 17 years. I now have one but he refuses to listen to any ideas that I may have. It is difficult to get an insurance company that will allow anything other then the typical band-aid of drugs when one is dealing with it as being a work-comp injury.
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3/13/2008
Name: Jessica
City: Jeannette
State: PA, USA
Your Sex: Female
Where Were You Born? mt. pleasant, PA
Where Do You Live Now? Jeannette
How Long Have You Lived There? 2 years
Your Age? 33
How many years has it been since you developed your symptoms of fibromyalgia? about 18
Your Age At Onset of Symptoms? around 15
What is Your Line of Work? Still working? various, no
Medical History: Polycystic Kidney Disease
Does Exercise Help? No, makes it worse
What Were Your First Symptoms? pain in my shoulders
What Are Your Current Symptoms? pain from head to toe, worst in my neck and shoulders
Did You Ever Have A Long Lasting Virus? yes
Any Military Service? no
Chemical or Pesticide Exposure? no
How Has Fibro Affected Your Life? I don't socialize, can't think straight, can't work
What Makes Symptoms Worse? standing too long-longer than 2-3 minutes, physical activity, cold temps.
What Makes You Feel Better? pain meds, help, but nothing ever totally helps
Do Your Symptoms Include Brain Fog? yes
How many years has it been since you developed the brain fog associated with fibromyalgia? started about 10 years ago
Was Your Rate of Decline Fast? no
Have You Tried Avoiding Dietary Fluoride? no
Remedies Tried: physical rehab, chiropracter, oxycontin, oxycodone, flexeril, motrin, hydrocodone, oxyir
Your Theories: I seem to have a lot of other unexplained problems-gastroparesis, migraines, neuropaty (just started recently), gyne problems-total/radical hysterectomy, gallbladder, I also have polycystic kidney disease and kidney stones disease.
Are We Missing Any Important Questions?

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