Fibromyalgia Questionnaire & Results

Latest Update: 11/19/2009

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29 QUESTIONNAIRE COMPLETED DATA FORMS FOR October 2009

10/30/2009
First Name: Renee
Age: 55
Male or Female: Female
City: Bellingham
State/Province: WA
Country: USA
How long have you lived there: 6 years
Where were you born: Seattle
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: no
What is Your Line of Work: Retired Military
How has Fibro affected your ability to work: Unable to work due to pain in muscles and joints.
How has Fibro affected your life: Unable to do the things I used to such as gardening,some household chores, cannot take care of my GD for long periods of time.
What were your first symptoms: Lots and lots of pain in my joints and muscles. Very bad fatigue
Your age at onset of symptoms: 45
How fast was your rate of decline: fast
What are your current symptoms: Much worse pain, cannot open lids off of jars due to joint pain being so bad. Fibro fog. Horrible fatigue. Have also developed Scleroderma. Have trouble swallowing now. Also having trouble with my lungs.
Number of years since you developed symptoms of fibromyalgia: 10
Do your symptoms include brain fog: Oh yes
Number of years since you developed the brain fog: 10
Describe the extent of your brain fog: Cannot remember what I went into a room to get. Forget to pay bills. Cannot remember names or dates or times of things. Just feel like I am in a zombie like state most of the time.
Estimate number of doctors you have seen for Fibro related symptoms: 10
Do your doctors tend to focus on all your Fibro symptoms: yes
Do your doctors treat your symptoms individually or collectively: collectively
Describe your experience with doctors: Have found a great DR to follow me. He is not a pill pusher but is always there and actually listens to what I am telling him. He is not afraid to run any tests that he thinks I might need to look at things at a deeper leve.
What remedies or medications have you tried: Not to much really as I don't think taking a lot of pills is going to help. Biggest thing for me is to exercise. Just have to work through the pain the best I can and know my limits.
What makes you feel better: Exercise and warm water. Rest during the day.
What makes you feel worse: High levels of hard activity. No sleep. Stress.
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: no
Have you tried any thyroid specific treatments: no
Your theories or comments: Just hoping that collectively these answers will begin to shed some light on this stuff.
Are we missing any important questions:

10/30/2009
First Name: Jessica
Age: 20
Male or Female: Female
City: Northglenn
State/Province: CO
Country: US
How long have you lived there: 2 1/2 years
Where were you born: Pueblo, CO
Is this the first time you have taken our questionnaire: Yes
If not, why are you returning:
Are you still working: Yes
What is Your Line of Work: I am a work study at the college that I am attending
How has Fibro affected your ability to work: I miss an extreme amount of work and I also have trouble working
How has Fibro affected your life: I do not even know who I am anymore. It has completely turned my life upside down
What were your first symptoms: Pain througout my left thigh into my hip
Your age at onset of symptoms: 19
How fast was your rate of decline: Ever since I have been dealing with it, it has been going down hill fast.
What are your current symptoms: fatigue, pain in arms shoulders legs back and neck, grumpy, headaches, dizzyness, extreme lack of sleep, loss of appitite, sadness, decreased mmotivation, loss of memory, loss of focus and concentration
Number of years since you developed symptoms of fibromyalgia: 1
Do your symptoms include brain fog: Yes
Number of years since you developed the brain fog: 6 months
Describe the extent of your brain fog: I cannot remember what I say to who; I have problems with school work, it is just really hard to remember things.
Estimate number of doctors you have seen for Fibro related symptoms: 3
Do your doctors tend to focus on all your Fibro symptoms: no
Do your doctors treat your symptoms individually or collectively: collectively
Describe your experience with doctors: It is just a long process, and I have only been able to see my specialist once, but I am going again soon. It has been a lot of doctor visits, and a lot of medication; whihch I cannot stand
What remedies or medications have you tried: Cymbalta, amitrypatline, vicodin, muscle relaxers, naproxen, stretching/ working out
What makes you feel better: muscle relaxers
What makes you feel worse: vicodin, stretching and working out
Have you tried avoiding fluoride in your diet: No
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: no
Have you tried any thyroid specific treatments: no
Your theories or comments: I am at my wits end dealing with this. I have not heard of many people with this disease that are as young as me.
Are we missing any important questions:

10/28/2009
First Name: LINDA
Age: 57
Male or Female: female
City: rogue river
State/Province: OREGON
Country: USA
How long have you lived there: 1-1/2 YEARS
Where were you born: SEATTLE, WA
Is this the first time you have taken our questionnaire: YES
If not, why are you returning:
Are you still working: NO
What is Your Line of Work: TECHNICAL ADVISOR COMPUTER SYSTEMS
How has Fibro affected your ability to work: HAVE NOT WORKED FULL TIME SINCE ONSET OF CSF IN 1990
How has Fibro affected your life: I WAS ACTIVE, THIN, DID AEROBICS, COMPETED IN LONG DISTANCE TRAIL RIDING, ATTENDED NIGHT SCHOOL, WORKED 60-70 HOURS A WEEK, ETC. I WENT FROM THAT TO DISABILITY, CURRENTLY I CAN MANAGE 4-5 HOURS A DAY AS LONG AS I CAN REST WHEN I NEED TO. I NO LONGER HAVE HORSES, AND MY MENTAL ACUITY IS ABOUT A FOURTH OF WHAT IT WAS. I COULD GO ON, BUT YOU GET THE IDEA.
What were your first symptoms: FIBRO AND CSF SEEM SO CLOSELY RELATED, BUT I'D HAVE TO SAY ABOUT 1-1/2 TO 2 YEARS AFTER THE ONSET OF CSF. IT'S HARD TO SAY EXACTLY, BECAUSE THE RESIDUAL ACHES AND PAINS FROM A VARIETY OF INJURIES.
Your age at onset of symptoms: 40
How fast was your rate of decline: FROM THE VIRAL EXPOSURE TO TOTAL DISABILITY WAS 7 MONTHS OF AN EXTREME STRUGGLE TO CONTINUE TO LIVE MY LIFE AS IT WAS.
What are your current symptoms: OVERWEIGHT, CONSTANT PAIN (LIKE A WATERCOLOR PAINTING), INCREASING WHEN I EXERT MYSELF. RECOVER IS MUCH FASTER THAN BEFORE, TAKING SOMETIMES ONLY A DAY OR TWO INSTEAD OF WEEKS.
Number of years since you developed symptoms of fibromyalgia: 18
Do your symptoms include brain fog: YES
Number of years since you developed the brain fog: 20
Describe the extent of your brain fog: IN THE BEGINNING, SOMETIMES IT WAS SO BAD I COULDN'T REMEMBER MY DOGS NAMES. NOW, MOSTLY IT'S A MATTER OF STAMINA, BUT THERE ARE A LOT OF DAYS WHEN I'M JUST TOO TIRED TO USE MY BRAIN THE WAY I USED TO. AND TOO MUCH BRAIN ACTIVITY GIVES ME A HEADACHE. i STILL LIKE TO DO LOGIC AND CROSSWORD PUZZLES BUT SOME DAYS I'M BETTER AT IT THAN OTHERS.
Estimate number of doctors you have seen for Fibro related symptoms: 5
Do your doctors tend to focus on all your Fibro symptoms: THE DOCTORS AT THE FIBRO AND FATIGUE CLINIC HELPED ME TREMENDOUSLY. WITHOUT THEM I'D STILL BE IN SQUARE ONE.
Do your doctors treat your symptoms individually or collectively: AT F&F, COLLECTIVELY.
Describe your experience with doctors: OVERALL, THEY SUCK.
What remedies or medications have you tried: SELECT COMFORT BED (+), DAILY HOT BATHS (+), WITH EPSOM SALTS, PEROXIDE, BAKING SODA ADDED AND NOT ALL TOGETHER(++), ALMOST EVERY HIGH END OPIATE BASED PAIN MED (-), STRANGELY ENOUGH, NYQUILL WORKS THE BEST WHEN THE PAIN IS THE WORST. IT ALLOWS ME TO SLEEP
What makes you feel better: DAILY HOT BATHS RELIGOUSLY TAKING MY REGIME OF SUPPLEMENTS POSITIVE DISRACTIONS, I.E., FOCUSING AWAY FROM THE PAIN
What makes you feel worse: EXTREME HEAT, EXTREME COLD, NOT TAKING A BREAK WHEN NEEDED. STRESS/ANXIETY DWELLING ON WHAT I'VE MISSED OUT ON.
Have you tried avoiding fluoride in your diet: NO
If so, which sources of fluoride: UNTIL TODAY, I DIDN'T KNOW FLUORIDE WAS A CONTRIBUTING FACTOR. HOWEVER, FOR THE LAST 10 YEARS I'VE LIVED ON WELL WATER, HAVEN'T TAKEN MANY DRUGS, AND EAT ONLY OUR ORGANIC VEGETABLES. FROM NOW ON, I WILL AVOID FLUORIDES LIKE THE PLAGUE. I WONDER, HOW DOES ONE AVOID THE PLAGUE? GARLIC, PERHAPS?
Have you made dietary changes to avoid any other neutrotoxins: I DON'T EAT FAST FOODS, ORGANICALLY GROW MY VEGIES, COOK EVERYTHING FRESH. AVOID DRS AND RX DRUGS. LIMIT MY PAIN MEDS TO NYQUILL AND ASPIRIN. WE DO NOT USE PESTICIDES, INSECTICIDES OR HERBICIDES OF ANY KIND, AND ALL CHEMICALS ARE STORED OUTSIDE THE HOUSE.
Have you tried any thyroid specific treatments: NO
Your theories or comments: WITH MY TYPICAL TYPE A ATTITUDE, I HAVE DONE EVERYTHING I POSSIBLY COULD (THAT I KNEW ABOUT) TO "CURE" THIS DIS-EASE. UNTIL TODAY I WAS UNAWARE OF THE FLUORIDE CONNECTION, AND AS OF TOMORROW I WILL FURTHER MY RESEARCH AND FORMULATE A PLAN TO DE-TOX MYSELF. FOR I WOULD LIKE NOTHING MORE THAN TO BE ME AGAIN...
Are we missing any important questions: I'LL HAVE TO THINK ON THAT.

10/27/2009
First Name: Iris
Age: 34
Male or Female: Female
City: Hamilton
State/Province: NJ
Country: USA
How long have you lived there: 5 years
Where were you born: Cleveland, OH
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: yes
What is Your Line of Work: Admissions Counselor- Higher Education
How has Fibro affected your ability to work: I can not stand for any period of time with out pain. I can not sit for a long period of time without having to move and then I am stiff when I get up. I have to use a headset for calls bc I can not hold the phone up or my arm goes numb.
How has Fibro affected your life: I have 2 young girls and have hard time keeping up with them. I go to bed very early and have a hard time getting up with them
What were your first symptoms: I had shooting pains in my legs when I was driving and my back got very sore. I had constant muscle pain in my arms.
Your age at onset of symptoms: 22
How fast was your rate of decline: It was pretty steady. I got better than worse. During pregnancy I am much better, than afterward the pain comes back 10x.
What are your current symptoms: Very sore and stiff neck, wrists, ankles, elbows, mid and lower back, headaches, memory loss, irritable bowel, fatigue, sleep problems and ears ringing and sinus congestion, depression
Number of years since you developed symptoms of fibromyalgia: 12
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 10
Describe the extent of your brain fog: I can be talking to someone and completely forget what I am talking about.
Estimate number of doctors you have seen for Fibro related symptoms: 10
Do your doctors tend to focus on all your Fibro symptoms: no
Do your doctors treat your symptoms individually or collectively: depends on the type of doctor- acupuncture and chiropractor treat them individually, others, like internists treat them collectively.
Describe your experience with doctors: Years ago doctors told me it was in my head. Rheumotologists thought I was faking it, internists had not heard about it. Since finding the world of chiropractic medicine I finally see some relief, although it takes frequent visits.
What remedies or medications have you tried: I have upped my Prozac dosage
What makes you feel better: Sleep, heat and being pregnant
What makes you feel worse: Cold, too much sugar, sleeping in a bad position, being over tired, standing too long
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: Yes
Have you tried any thyroid specific treatments: no, I have been tested but my levels are "fine"
Your theories or comments: Pregnancy definitely plays a large roll in ups and downs.
Are we missing any important questions: Not sure!

10/26/2009
First Name: LIDIA
Age: 50
Male or Female: FEMALE
City: BAY HARBOR ISL
State/Province: fl
Country: usa
How long have you lived there: 5 YEARS
Where were you born: CUBA
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: NO
What is Your Line of Work:
How has Fibro affected your ability to work:
How has Fibro affected your life:
What were your first symptoms: DEEP PAIN IN WHOLE BODY, PAIN STIFFNESS IN HANDS, LEGS ARE JUMPY AT NIGHT, MANY SLEEPLESS NIGHTS, ALWAYS TIRED
Your age at onset of symptoms: ABOUT 13 YEARS OLD
How fast was your rate of decline:
What are your current symptoms: DEEP PAIN IN LEGS, HANDS, HEADACHES, SLEEPLESSNESS, TIRED
Number of years since you developed symptoms of fibromyalgia: SINCE YOUTH
Do your symptoms include brain fog: YES, DIDN'T KNOW THAT WAS A SYMPTOM, BUT I ALWAYS HAVE BRAIN "SLOWNESS" LACK OF MEMORY
Number of years since you developed the brain fog: 20 OR SO
Describe the extent of your brain fog: SLOW THINKING, THOUGHTS NOT CLEAR, TROUBLE MAKING SENTENCES SOMETIMES, HEAD FEELS "HEAVY"
Estimate number of doctors you have seen for Fibro related symptoms: 3
Do your doctors tend to focus on all your Fibro symptoms: NO, MIGRAINES IS MAIN FOCUS
Do your doctors treat your symptoms individually or collectively: INDIVUALLY
Describe your experience with doctors: LOTS OF TALKING, BUT I DO NOT FEEL THEY LISTEN. MY PAIN IS ALWAYS BLAMED ON SOMETHING ELSE, IE: HYPOTHYROID, MIGRAINES, TACHYCARDIA
What remedies or medications have you tried: VICODIN, MOTRIN 800, DEMOROL, ULTRAM, YOU NAME I HAVE PROBABLY TRIED IT
What makes you feel better: SO FAR NOTHING
What makes you feel worse: BEDTIME, MIDDLE OF DAY, LATE AFTERNOON
Have you tried avoiding fluoride in your diet: NO
If so, which sources of fluoride: ONLY TOOTHPASTE
Have you made dietary changes to avoid any other neutrotoxins: NO
Have you tried any thyroid specific treatments: ARMOUR THYROID, SYNTHROID
Your theories or comments: I AM NOT SURE MY DOCTORS HAVE REALIZED WHAT I HAVE, I AM SELF DIAGNOSING BECAUSE JUST ABOUT EVERY SYMPTOM LISTED I HAVE AND AM SUFFERING MISERABLY FROM---I HAVE NO LIFE. I EITHER LAY IN BED ON PAIN MEDS, OR SUFFER PAIN AND CANNOT TRY TO GO ON.
Are we missing any important questions:

10/25/2009
First Name: sharon
Age: 45y
Male or Female: female
City: perranporth
State/Province: cornwall
Country: GB
How long have you lived there: 5yrs
Where were you born: south africa
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: yes
What is Your Line of Work: cleaning
How has Fibro affected your ability to work: sore neck tennis elbow sore back feeling exhausted feeling nauseau burning infeet pain in toes pain in arms wrists and fingers
How has Fibro affected your life: constantly tired too exhausted to handle problems with bills battle to shop and cook food dont feel like eating would rather sleep
What were your first symptoms: plantar fasciitis tennis elbow then sore knees
Your age at onset of symptoms: 43yrs
How fast was your rate of decline: two years
What are your current symptoms: pain in hips burning in feet pain in toes pain in ribs battle to swallow pain in neck arms wrist fingers pain in shouldrers and lower back loss of appetite nauseau pain in tops of legs burning and fluid in elbows and knees very tired
Number of years since you developed symptoms of fibromyalgia: two years
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: one
Describe the extent of your brain fog: find it hard to take things in have to read over and over forget if ive done things and have to check cannot cope unless prepare myself night before and make lists and notes to myself
Estimate number of doctors you have seen for Fibro related symptoms: 5 or more
Do your doctors tend to focus on all your Fibro symptoms: no
Do your doctors treat your symptoms individually or collectively: all they interested in is prescibing painkillers
Describe your experience with doctors: doctors gave me cortisone injection which helped plantar fasciitis had two injections in each arm did nothing for me when i said my knees where sore told it was flu symptoms then told it was part of ageing then told it was in my head insited on seeing another doctor changed from perranporth to st agnes surgery then was sent for x-rays and clearly showed osteo-arthritis had to threaten to commit suicide to see orthopedic and rhumetology surgen orthopedic surgeon said nothin he could do rhumetology surgeon sent me for x-rays elbows and neck but showed nothing then mri scan neck and shoulders found nothing feel worse since last visit and due to go back19/11/09
What remedies or medications have you tried: omeprazole20mg,naproxen500mg,acupan30mg,arcoxia90mg,amitriptyline10mg,zydol50mg,durogesic dtrans12mcg now increased to 25mcg
What makes you feel better: nothing
What makes you feel worse: taking tablets and not feeling or seeing any results
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride: none
Have you made dietary changes to avoid any other neutrotoxins: am going to weight watchers so eat healthy
Have you tried any thyroid specific treatments: no
Your theories or comments: feel treatments are waste of time
Are we missing any important questions: dont know

10/25/2009
First Name: mary
Age: 32
Male or Female: female
City: kent city
State/Province: mi
Country: US
How long have you lived there: 4 years
Where were you born: grand rapids
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: no
What is Your Line of Work: I did customer service
How has Fibro affected your ability to work: I have pain in my joint and my hips hurt really bad.I can't stand very long because I have psoriasis all over and osteoarthirits also. I have pain in my neck and migrains.I have cloudy vision, when that happens I can't see.my fingers are affected, I can't move my fingers sometimes.I have a hard time walking a distance.
How has Fibro affected your life: I can't work, and do most household chores. I miss playing with my kids. I feel depressed a lot of the time.
What were your first symptoms: Pain all over my body, sever migranes
Your age at onset of symptoms: 17
How fast was your rate of decline: About 8 years
What are your current symptoms: Pain everwhere, migranes
Number of years since you developed symptoms of fibromyalgia: 10 years plus
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 5
Describe the extent of your brain fog: Forgetting a lot of long term and short term memory
Estimate number of doctors you have seen for Fibro related symptoms: 5
Do your doctors tend to focus on all your Fibro symptoms: Yes
Do your doctors treat your symptoms individually or collectively: Individually
Describe your experience with doctors: Very understanding, helpful
What remedies or medications have you tried: Elivel,cymbalta,muscle relaxers, neurontin, exercise,
What makes you feel better: Nothing
What makes you feel worse: Cold weather, being sick
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: Yes
Have you tried any thyroid specific treatments: I was checked for that
Your theories or comments: No
Are we missing any important questions:

10/25/2009
First Name: Linden
Age: 48
Male or Female: female
City: Sleaford
State/Province: Lincolnshire
Country: England
How long have you lived there: 25years
Where were you born: Birmingham England
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: yes
What is Your Line of Work: Home support carer
How has Fibro affected your ability to work: yes
How has Fibro affected your life: Make no plans live from day to day.Take no holidays. Social life vertually none, sex life vertually 0. Unable to walk any distance.
What were your first symptoms: tirdness swelling and muscular pain in neck shoulders arms and hand
Your age at onset of symptoms: 37
How fast was your rate of decline: gradual up untill 4 years ago then rapidly after then
What are your current symptoms: Constant pain everywhere,chronic tirdness, digestive problems, co-ordination problems,memory fog, sensitive to sun. thinning hair swollen hands/feet/ankles,weight gain,numbness/pins and needles loss of libido,depression,headaches/migraine,high blood pressure
Number of years since you developed symptoms of fibromyalgia: 11
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 4
Describe the extent of your brain fog: have to write reminders at times to myself. Days and times can get jumbled up on recall.forgetting where put things or tasks I may need to do from tasks round the home to paying bills.Not remembering conversations at times or information.
Estimate number of doctors you have seen for Fibro related symptoms: 4
Do your doctors tend to focus on all your Fibro symptoms: no
Do your doctors treat your symptoms individually or collectively: individually
Describe your experience with doctors: poor
What remedies or medications have you tried: citralopram felodopine propranolol lansoprazole co-codamol ibuprofen ferrous sulphate
What makes you feel better: none
What makes you feel worse: none
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: no
Have you tried any thyroid specific treatments: no
Your theories or comments: medication offered eases certain pain but does not make me feel better though know if don't take them. Never been offered thyroid treatment as range has always came back normal am querying with gp this week.
Are we missing any important questions: no

10/24/2009
First Name: D.
Age: 61
Male or Female: F
City: Minot
State/Province: N.D.
Country: USA
How long have you lived there: 61years
Where were you born: Minot
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: Yes
What is Your Line of Work: Daycare
How has Fibro affected your ability to work: I'm very slow at doing things but I can sit when I get tired
How has Fibro affected your life: Wide Sread painall over my body Not able to do the things I used to do
What were your first symptoms: wide spread pain even my hair hurt.
Your age at onset of symptoms: 48
How fast was your rate of decline: started slow but escalated quite fast
What are your current symptoms: Brain fog Pain in legs and arms very stiff in the mornings
Number of years since you developed symptoms of fibromyalgia: 13 years
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: from the beginning 13 years
Describe the extent of your brain fog: Forgetting appointments unable to remember when which chilld is coming
Estimate number of doctors you have seen for Fibro related symptoms: six
Do your doctors tend to focus on all your Fibro symptoms: No
Do your doctors treat your symptoms individually or collectively: individually
Describe your experience with doctors: one of the told me I was depressed one sent me to a pain clinic The others just gave me pain pills
What remedies or medications have you tried: Ibprofen 800 celebrex flexeral lot of pain pills
What makes you feel better: resting eating properly
What makes you feel worse: overdoing things
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: yes processed meats dairy products
Have you tried any thyroid specific treatments: yes synthroid
Your theories or comments: Must have an understanding partner and understanding family
Are we missing any important questions:

10/24/2009
First Name: Jo Ann
Age: 50
Male or Female: Female
City: North Port
State/Province: FL
Country: USA
How long have you lived there: 5 years
Where were you born: Asheville, NC
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: Yes
What is Your Line of Work: Administrative Assistant
How has Fibro affected your ability to work: Some. I have to pace myself, use time on weekends more wisely.
How has Fibro affected your life: Have had to cut way back on activities, types of activity, diet changes, more meds.
What were your first symptoms: Achy joints, fatigue
Your age at onset of symptoms: probably 12 years old
How fast was your rate of decline: Very slow, steady until the penicillin reaction
What are your current symptoms: Fatigue is the prevalent one, aches, brain fog.
Number of years since you developed symptoms of fibromyalgia: ? Seems most of my life there have been symptoms.
Do your symptoms include brain fog: YES
Number of years since you developed the brain fog: 10 ish?
Describe the extent of your brain fog: Depends on my diet. If I eat wrong, I have way more
Estimate number of doctors you have seen for Fibro related symptoms: 9, minimum
Do your doctors tend to focus on all your Fibro symptoms: no
Do your doctors treat your symptoms individually or collectively: individually
Describe your experience with doctors: Most have been sympathetic to symptoms, but only the last three have realized that they are all symptoms of the same disorder.
What remedies or medications have you tried: Guifenesin, Vicodin, Tylenol, Xanax, Prozac, Amitryptiline.
What makes you feel better: Rest.
What makes you feel worse: Over activity
Have you tried avoiding fluoride in your diet: no - until very recently
If so, which sources of fluoride: water, toothpaste. Need to investigate other sources.
Have you made dietary changes to avoid any other neutrotoxins: no
Have you tried any thyroid specific treatments: Kelp. Blood tests indicate that I have a healthy thyroid. HA!
Your theories or comments: I have always felt that there is something "broken" in me. Whether that is an intolerance to a naturally occurring substance, or hormonal reaction, I don't know.
Are we missing any important questions:

10/22/2009
First Name: Adel
Age: 41
Male or Female: Female
City: Hobart
State/Province: TAS
Country: Australia
How long have you lived there: 6yrs
Where were you born: England
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: yes
What is Your Line of Work: Tour Guide
How has Fibro affected your ability to work: when I am bad I cannot get up - am self employed so needless to say, no sick-leave or anything. I have to work
How has Fibro affected your life: I learnt many years ago to juggle and try to minimise certain activites.
What were your first symptoms: After Glandular Fever when I was 18, my first syptoms were what can only be described as RSI in both hands and arms. I was literally living with flu symptoms constantly and the glands in my neck/throat all swollen, intermittent exhaustion. Terrible 'brain fog' like being stoned.. not in a fun way, trouble speaking/thinking in a straight line. A horrible feeling.
Your age at onset of symptoms: 18
How fast was your rate of decline: pretty much ongoing from then
What are your current symptoms: well, not suprisingly, all the same, the 'RSI" has been a trial - the dr's tell me there is no such thing as permanent damage from RSI/tendonitis and tell me it is all in my head. Last time I saw a Dr he told me that people pay good money to feel like I do (when experiencing extreme brain fog) and pretty much laughed me out of the clinic. I get completely wiped out with this for anything from 1 -5 days at really random intervals - might be fine for a couple of months, then wham, no ryhme no reason, I am bedridden.
Number of years since you developed symptoms of fibromyalgia: 22
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 22
Describe the extent of your brain fog: As above.. I find it a little scary. I struggle to drive, talk, walk and function in my job when I am experiencing this. It's like being stoned.. but not fun, it's a little scary. My friends who see me experiencing it think it bizarre.. it's like I am drunk? I experience total virtigo with the brain fog as well, so even sitting in a chair, I feel like I am falling over. It sux and of course, gp tells me it also does not exist.
Estimate number of doctors you have seen for Fibro related symptoms: 20+
Do your doctors tend to focus on all your Fibro symptoms: no
Do your doctors treat your symptoms individually or collectively: I have not been officially diagnosed with FM - I have given up on going to Dr's and being told my symptoms dont exist.
Describe your experience with doctors: I gave up on them a couple of years ago.
What remedies or medications have you tried: I have tried to clean up my diet, I gave up smoking (yay), I use make myself tonics of ACV and lemon juice most days. No drugs - no medications for a symptom that doesnt exist (according to Drs)
What makes you feel better: If I can Lie down immediately when the brain fog kicks in.. I feel improvement straight away.
What makes you feel worse: when I have to keep doing/working/driving etc even tho I am struggling to even stand. If I overdo and overuse my hands/arms it's hell I have restless leg syndrome and find that it is much worse when everything else is.
Have you tried avoiding fluoride in your diet: yes
If so, which sources of fluoride: not suprisingly - the two periods in my life where the syptoms have been far worse (ages 18-28 and 36-current) are the only times that I have had flourinated water. Outside of these times I have been out on land on tank/rain water. I read recently that in Melbourne they have 6 flourination plants to do the water for 6 million people. Here in Tasmania, we have approx 650,000 people and have 46 fully operating flourination plants in operation!! It's disturbing considering that the people here, in my travel experience, are without a doubt, the most docile people I have ever met. I am currently sourcing a spring water tap that I can get my clean water from so that I can get away from tap water. the connection to flourine and brain fog in particular rings very very true for me. I also drink heaps of water as I am terribly thirsty all the time so that hasnt helped. Australian soldiers, heavily flourinated, are reportedly the most docile on the planet too. Why the hell is this stuff legal? I believe here in Australia we buy our flourine (chemical waste) from China - who do not have flourinated water. Go figure
Have you made dietary changes to avoid any other neutrotoxins: yes, have tried to clean up my diet and source organics.
Have you tried any thyroid specific treatments: no
Your theories or comments: as above.. I firmly believe that flourine is very very relevant to this.
Are we missing any important questions:

10/22/2009
First Name: Audrey
Age: 61
Male or Female: female
City: minnedosa
State/Province: manitoba
Country: canada
How long have you lived there: 30 years
Where were you born: saskatchewan canada
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: no
What is Your Line of Work: was a care giver in my own home
How has Fibro affected your ability to work: yes
How has Fibro affected your life: What life,since fibro i exist not live,don't travel very far,never know when i'm going to have diahrrea,have headaches all the time only get about 2 hours sleep a night.can't think very clearly a lot of the time.forget how to do things.I have sewed for 40 years or more and went to use my machine one day and didn't know how to thread it.I used to decorate cakes and was going to do a birthday cake for my mother in law and couldn;t remember the recipe for icing.even though i have made it a thousand times, i could go on and on.
What were your first symptoms: aching muscles,diharrea,soon as i had any kind of stress i would get all mixed up and say stupid things that didn't make any sense.very bad headaches
Your age at onset of symptoms: 51
How fast was your rate of decline: very fast actually.I had been in a car accident in 1997 and then was sent for intense therapy for six weeks and by the time i was done that i was in really bad shape.
What are your current symptoms: diharrea;sore muscles,headaches.forget things,double vision.my legs seem to move all night.can't sleep.average about 2 hours a night.can't think of them all right now but very many of them.
Number of years since you developed symptoms of fibromyalgia: 10
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 9
Describe the extent of your brain fog: when i am under any stress it is the worst.soon as something goes wrong,like my fridge breaking down or the car etc.it is really bad day to day it's not that bad but sure makes me say the stupidest things that don't make any sense,last winter our hot water tank broke and we live in a mobile home and you have to go outside to a little door to get to the water tank.It was 40 below and by the time they we're done changing it the water pipes had froze.after getting the pipes thawed out they asked me to run hot water in the tub,well i turned on the cold water tap and they told me it was the cold tap i acused them of changing the taps around and that i was turning on the hot.I argued that i was right and they looked at me like i was crazy.it took a couple of days for me to realize they didn't change them around.this kind of thing happens alot
Estimate number of doctors you have seen for Fibro related symptoms: 6 or 7
Do your doctors tend to focus on all your Fibro symptoms: yes
Do your doctors treat your symptoms individually or collectively: some individual and others collectively
Describe your experience with doctors: finally found a doctor that tested me for fibro when he ruled everything else out
What remedies or medications have you tried: i can't even remember all the medications i have tried,right now they are trying me on lyrica
What makes you feel better: when i first get up i soak in a hot tub of water
What makes you feel worse: when i'm under stress or a lot of pressure is put on me when the weather is cold and damp
Have you tried avoiding fluoride in your diet: yes
If so, which sources of fluoride: tap water pesticides
Have you made dietary changes to avoid any other neutrotoxins: yes
Have you tried any thyroid specific treatments: on medication
Your theories or comments: well i sure didn't have any of this before i had my car accident with bad whip lash.
Are we missing any important questions: i don't think so

10/21/2009
First Name: G.
Age: 50
Male or Female: Female
City: lancaster
State/Province: Lancashire
Country: United Kingdom
How long have you lived there: 50 years
Where were you born: Bury
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: no
What is Your Line of Work:
How has Fibro affected your ability to work:
How has Fibro affected your life: fatigue, muscle pain, brain fog, anxiety, irritability,stiffness
What were your first symptoms: lower back pain after flu virus
Your age at onset of symptoms: 50
How fast was your rate of decline: it has been over the past three months, and seems to be getting worse
What are your current symptoms: stiffness and pain round the collar bone and shoulders, lower back pain, and top of legs, anxiety, depression, brain fog
Number of years since you developed symptoms of fibromyalgia: nil
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: past 3 months
Describe the extent of your brain fog: I cannot think of the word I want to say, I have to read over and over again, and feel as if I am unintelligent
Estimate number of doctors you have seen for Fibro related symptoms: I havnt seen one yet, going tomorrow
Do your doctors tend to focus on all your Fibro symptoms:
Do your doctors treat your symptoms individually or collectively:
Describe your experience with doctors:
What remedies or medications have you tried: pain relief
What makes you feel better:
What makes you feel worse: doing things, like going out, and walking
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride: tap water
Have you made dietary changes to avoid any other neutrotoxins: no
Have you tried any thyroid specific treatments: no
Your theories or comments:
Are we missing any important questions:

10/21/2009
First Name: Liz
Age: 53
Male or Female: female
City: Boca Raton
State/Province: Fl.
Country: USA
How long have you lived there: 20 years
Where were you born: bronx N.Y.
Is this the first time you have taken our questionnaire: yes
If not, why are you returning: Liz
Are you still working: No
What is Your Line of Work: not working
How has Fibro affected your ability to work: can't
How has Fibro affected your life: not fun anymore
What were your first symptoms: after fall 8 mo. ago
Your age at onset of symptoms: 52
How fast was your rate of decline: few days
What are your current symptoms: pain, spasms,depression,twitches,joint pain, insomnia
Number of years since you developed symptoms of fibromyalgia: 8 months
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 8 months
Describe the extent of your brain fog: I'm not myself anymore
Estimate number of doctors you have seen for Fibro related symptoms: 30
Do your doctors tend to focus on all your Fibro symptoms: no
Do your doctors treat your symptoms individually or collectively: both
Describe your experience with doctors: no one has helped me
What remedies or medications have you tried: lexapro, xanax,ambian, vicodine,advil,bayer asprin, motrin,excedrine,
What makes you feel better: ambian
What makes you feel worse: stress, sitting housework, travel
Have you tried avoiding fluoride in your diet: mostly
If so, which sources of fluoride: i avoid tap water, my dog has flea and tic killer on him
Have you made dietary changes to avoid any other neutrotoxins: yes
Have you tried any thyroid specific treatments: no
Your theories or comments: the continued stress and trauma to my body may have caused it
Are we missing any important questions: can't think right now

10/21/2009
First Name: delphie
Age: 47
Male or Female: female
City: perth
State/Province: wa
Country: australia
How long have you lived there: 18 years
Where were you born: uk
Is this the first time you have taken our questionnaire: no
If not, why are you returning: more information and helpful tips to recomend
Are you still working: part time
What is Your Line of Work: ladies fashin
How has Fibro affected your ability to work: has a huge impact, as i never know how i feel until i wake up.
How has Fibro affected your life: It has made me a sad person, having this to deal with, i feel as if i have lost my spark.
What were your first symptoms: Awful fatigue, shocking pain in my legs neck and shoulders.
Your age at onset of symptoms: 42
How fast was your rate of decline: slow at firt, then within 2 years i could hardly function.
What are your current symptoms: Pain in my ribs,aka, cosrochondritis,feel drained some days and teary.
Number of years since you developed symptoms of fibromyalgia: 5 years
Do your symptoms include brain fog: sometimes
Number of years since you developed the brain fog: last 2 years
Describe the extent of your brain fog: forget stupid things like, directions while driving.
Estimate number of doctors you have seen for Fibro related symptoms: 2
Do your doctors tend to focus on all your Fibro symptoms: No they look for other causes and blame everything on Menopause or depression.
Do your doctors treat your symptoms individually or collectively: Individually
Describe your experience with doctors: Give up really, as no one gets it at all.
What remedies or medications have you tried: Endep, various diets, Tramadol for pain
What makes you feel better: The only things that help now are Massages, and i use pure Emu Oil for the pain and it seems to be working.
What makes you feel worse: Overdoing housework, walking for long periods, cold ot Humidity
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride: I only drink filtered water now.
Have you made dietary changes to avoid any other neutrotoxins: Try to stick to low fat diets and keep the carbs to a minimum
Have you tried any thyroid specific treatments: no
Your theories or comments: I think my Hysterectomy made my health worse and varioud meds for shingles and whooping cough made me worse. In fact im worse if i take any medications as my body seems to have more pain and fatigue.I would recomend EMU OIL only the pure stuff as it can be taken orally as well as massaging into the painful areas. It seems to settle the nerve pain down and stops the tingling sensations on the skin. coq10 and vitB and Magnesium also helps.
Are we missing any important questions: Just, how do we all cope and what level of pain and depression do we all have as soom days my moods are shocking especially the depression as it hits very suddenly

10/20/2009
First Name: Melissa
Age: 37
Male or Female: female
City: knoxville
State/Province: tennessee
Country: usa
How long have you lived there: 37 years
Where were you born: tennesee
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: yes
What is Your Line of Work: Owner of a preschool
How has Fibro affected your ability to work: yes, have trouble being on my feet and doing lifting of children
How has Fibro affected your life: yes, don't always get to do activities because I won't have time to recover
What were your first symptoms: intense pain in ankles and feet
Your age at onset of symptoms: 29
How fast was your rate of decline: quick at first now has leveled off
What are your current symptoms: pain in neck, shoulders, headaches, inability to sleep, severe depression, brain fog
Number of years since you developed symptoms of fibromyalgia: 9
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 4
Describe the extent of your brain fog: at times can't remember where I am going or how to get there, forget things all the time
Estimate number of doctors you have seen for Fibro related symptoms: 4
Do your doctors tend to focus on all your Fibro symptoms: the one I have now does
Do your doctors treat your symptoms individually or collectively: individually
Describe your experience with doctors: Not good until found one 4 years ago
What remedies or medications have you tried: lyrica, cymbalta, muscle relaxers, anti-imflammatories, massage, exercise
What makes you feel better: sometimes nothing, weekly massage, rest
What makes you feel worse: not sleeping, change in weather especially cold, lots of activity
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: at first, no sugar, no junk
Have you tried any thyroid specific treatments: no
Your theories or comments:
Are we missing any important questions: no

10/20/2009
First Name: Tamara
Age: 38
Male or Female: Female
City: Morinville
State/Province: Alberta
Country: canada
How long have you lived there: 13 years
Where were you born: Red Deer
Is this the first time you have taken our questionnaire: Yes
If not, why are you returning:
Are you still working: no
What is Your Line of Work: Administrative Assistant
How has Fibro affected your ability to work: I haven't worked since November of 2005. Too much pain to get through a normal day, nevermind working on top of that
How has Fibro affected your life: I have a hard time getting dressed, can't make my beds, bring laundry up from the basement, etc. Life has gotten quite difficult for me. There are loads of things that I can't do with my 9 year old daughter due to the pain I am in
What were your first symptoms: Back pain
Your age at onset of symptoms: 28
How fast was your rate of decline: it comes and goes, but in 2000 I was diagnosed, and at that point, it was taking me 15 minutes to go from a sitting to a standing position
What are your current symptoms: PAIN, not sleeping, irritable bowel syndrome, tension and migrane headaches, increased tension in muscles, lowered imumne system, hypo thyroidism
Number of years since you developed symptoms of fibromyalgia: 10
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 10
Describe the extent of your brain fog: I have days where I drive somewhere and don't remember how I got there. Daily search for my car keys. etc
Estimate number of doctors you have seen for Fibro related symptoms: 8
Do your doctors tend to focus on all your Fibro symptoms: yes, and nothing else. Everything is blamed on fibromyalgia. Doesn't matter the symptom, it seems to all fall back on fibromyalgia
Do your doctors treat your symptoms individually or collectively: both
Describe your experience with doctors: Most of the doctors use fibro as a way out of finding the real cause and treating the problem
What remedies or medications have you tried: morphine, percocet, hydro morph contin, I have tried every kind of narcotic out there.
What makes you feel better: Nothing
What makes you feel worse: moving, not enough sleep, stress
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: no
Have you tried any thyroid specific treatments: no
Your theories or comments: n/a
Are we missing any important questions: no

10/19/2009
First Name: Sandra
Age: 68
Male or Female: female
City: arlington
State/Province: texas
Country: usa
How long have you lived there: 68
Where were you born: Floydada, Texas
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: no
What is Your Line of Work: retired school teacher
How has Fibro affected your ability to work: yes
How has Fibro affected your life: tiredness, pain constantly for years and years
What were your first symptoms: pain in upper chest, both sides, two locations, near collarbones
Your age at onset of symptoms: 30
How fast was your rate of decline: slow at first
What are your current symptoms: tender points in chest, neck, low back, upper back, elbows (inside and outside), ankles, legs
Number of years since you developed symptoms of fibromyalgia: 38
Do your symptoms include brain fog: no
Number of years since you developed the brain fog:
Describe the extent of your brain fog:
Estimate number of doctors you have seen for Fibro related symptoms: 5
Do your doctors tend to focus on all your Fibro symptoms: no, except one doctor
Do your doctors treat your symptoms individually or collectively: individually, except one doctor
Describe your experience with doctors: frustrating
What remedies or medications have you tried: aspirin and tylenol twice daily, nystatin after meals for chronic intestinal yeast, which causes the muscle inflamation/irritation
What makes you feel better: warm baths, pain medication, mild exercise, "counting carbs" (to lower yeast infection)
What makes you feel worse: insomnia, eating processed sugar and flour products, sitting at computer for several hours
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride: tap water
Have you made dietary changes to avoid any other neutrotoxins: no
Have you tried any thyroid specific treatments: I have taken thyroid supplements for decades now, low thyroid runs in my family, fibromyalgia doesn't
Your theories or comments: cutting down on processed sweets and flour products helps the most, but that is hard since I retired and have free time at home near food
Are we missing any important questions: 1. Ask women if they have chronic vaginal yeast (which I have had since I was 30, which is when I also began having fibromyalgia sore points. 2. Ask about digestive yeast infection. I think the dr. was right when he diagnosed me with the digestive tract yeast. If I get that under control, the fibromyalgia gets better. 3. Also, what about chronic insomnia, tension and anxiety, possibly related to childhood abuse. I had a very evil father whom I lived in fear of, and the muscle tension caused by ptsd/chronic anxiety is definitely related. When I get tense, I get worse. Finally, ask if they have also been diagnosed with fibromyalgia and/or TMJ. I have both of those and the three sets of disease symptoms get worse together and improve somewhat together. I hope you can help me. I am sick and so tired of the chronic pain.

10/16/2009
First Name: Lee
Age: 52
Male or Female: F
City: Tampa
State/Province: Fl
Country: USA
How long have you lived there: 6 yrs
Where were you born: Northeast PA
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: no
What is Your Line of Work:
How has Fibro affected your ability to work:
How has Fibro affected your life:
What were your first symptoms: Flu like aches & fatigue
Your age at onset of symptoms: 43
How fast was your rate of decline: moderate
What are your current symptoms: pain, fatigue, fog, chemical sensitivities
Number of years since you developed symptoms of fibromyalgia: 10
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 8
Describe the extent of your brain fog: At times I feel as though I must have had a stroke because my mind is so muddy.
Estimate number of doctors you have seen for Fibro related symptoms: 5
Do your doctors tend to focus on all your Fibro symptoms: yes
Do your doctors treat your symptoms individually or collectively: both
Describe your experience with doctors: some satisfying, some frustrating
What remedies or medications have you tried: lyrica, xanax, provigil, vicodin, darvocet, motrin, protonix
What makes you feel better: currently lyrica, vicodin, provigil and xanax, attending a support group and self respect.
What makes you feel worse: weather changes and becoming to frustrated
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: no
Have you tried any thyroid specific treatments: i was diagnosed with Wilson's Thyroid but declned the remedy prescribed.
Your theories or comments: I am hoping FMS will be cured like ulcers were cured. Perhaps one day they will trip over the answer and the grief will end.
Are we missing any important questions: Do people belong to a support group. At the very least it validates the insanity. At best it's a wonderful sharing of helpful info and a feeling of acceptance.

10/16/2009
First Name: Emma
Age: 36
Male or Female: f
City: napa
State/Province: cali
Country: usa
How long have you lived there: 15 yrs
Where were you born: San Fran, cali
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: no
What is Your Line of Work: Nurse, RN
How has Fibro affected your ability to work: I am unable to work. I could never be able to be reliable on a day to day basis since my pain is unpredictable and very high.
How has Fibro affected your life: It has totally changed my life.
What were your first symptoms: Pain in all my joints, tired, aches all over, Weird skin sensations,Memory problems, increased anxiety
Your age at onset of symptoms: 32
How fast was your rate of decline: FAST!
What are your current symptoms: all the as the first except worse.
Number of years since you developed symptoms of fibromyalgia:
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 4
Describe the extent of your brain fog: Really bad. I forget what I'm doing, forget what is said to me, comprehending is bad,
Estimate number of doctors you have seen for Fibro related symptoms: 2
Do your doctors tend to focus on all your Fibro symptoms: yes
Do your doctors treat your symptoms individually or collectively: individual
Describe your experience with doctors: it has been ok, but would like for my rheumatogist to work w a pain management doctor.
What remedies or medications have you tried: Prestiqe, Klonipin, soma, darvocet, Vicodin, Robaxin, Cymbalta, lyrica, wellbutrin
What makes you feel better: Vicodin, Soma, wellbutrin, Klonipin
What makes you feel worse: Lyricia (had a bad reaction), cymbalta
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: no
Have you tried any thyroid specific treatments: I have hypothyroid and take synoid for.
Your theories or comments: I do believe that your primary health care doctor who treats your fibro (my is a Rhemo) needs to work w a pain mangement doc to try and get the best treatment and relief for the patient.
Are we missing any important questions:

10/16/2009
First Name: Lu
Age: 59
Male or Female: female
City: LaPlata
State/Province: Md
Country: USA
How long have you lived there: 21 years
Where were you born: DC
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: no - due to chronic pain
What is Your Line of Work: federal government senior management analyst
How has Fibro affected your ability to work: widespread pain from all my muscles being in spasm, fatigue, need to rest to lower the pain level, I'm not the sharp thinker I was
How has Fibro affected your life: turned it upside down I'm not even half the person I used to be
What were your first symptoms: neck pain from motor vehicle collision. I was sitting at a stop light and was rear ended by a truck
Your age at onset of symptoms: 54
How fast was your rate of decline: not immediate, but quickly....I tried working for ten months part time but it was evident that the pain was not going anywhere despite numerous therapies
What are your current symptoms: whole body muscle spasms, tingling, terribly burning all over my body, occipital pain, my crotch goes numb, the palm of my hands burn
Number of years since you developed symptoms of fibromyalgia: I've had it five years; pain waxes and wains; high and low pain days
Do your symptoms include brain fog: yes, numbers and words
Number of years since you developed the brain fog: five years, seems like its getting worse
Describe the extent of your brain fog: I will play an occasion game of scrabble and we count our score out loud. While I'm counting out loud fast I skip numbers. I can't remember words. I can only think of one thing at a time or there will be a problem; like if I'm heating up something and move to something else, I'll burn it because I can't think of two things at once. I have to remember why I'm going somewhere. My short term memory is shot.
Estimate number of doctors you have seen for Fibro related symptoms: 12
Do your doctors tend to focus on all your Fibro symptoms: no
Do your doctors treat your symptoms individually or collectively: individually
Describe your experience with doctors: I've been pleased with all my doctors starting with neurology diagnosis of slight spinal cord injury even though there is no negative tests and I've had all of them; spent over $50K on medical. Pain mgmt doctor was the best with lidiocane injections and prolotherapy. Chiropractors and massage and water therapy have helped to lower the pain threshold.
What remedies or medications have you tried: Amrix, Skelaxin, naproxen, ambien, gabapentin, baclofen, nortriptyline, ultram, cymbalta, tizanidine, lyrica. pain OTC's
What makes you feel better: massage, rest, water therapies, limiting activity
What makes you feel worse: working, not limiting my activity, traveling, prolonged sitting or laying down, bending head forward, cold weather, stress
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride: I have an artesian well in home. No flouride in my diet or water that I know of...possibly in tooth paste....Post traumatic FMS came directly from cars colliding.
Have you made dietary changes to avoid any other neutrotoxins: no
Have you tried any thyroid specific treatments: I had my thyroid tested and it is normal. Endocrine Doctor said I have no nodules and no autoimmune problems.
Your theories or comments: The Federal and State Governments need to relate FMS cases to whiplash and save a bundle of money on disability claims. The auto insurance companies are getting away with robbery simply because lawyers don't know or don't want to represent plaintiffs with PT FMS. Whiplash causes FMS! I know four people, men and women who developed it from a car collision. Researchers need to separate out the groups of people who have whole body muscle pain from injuries such as whiplash from those who can't figure out how/when symptoms started.
Are we missing any important questions: tell us when and where data conclusions will be posted and how data is being used

10/15/2009
First Name: amy
Age: 33
Male or Female: female
City: lufkin
State/Province: tx
Country: angelina
How long have you lived there: 23yrs
Where were you born: silsbee,tx
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: yes
What is Your Line of Work: nurse aid for the state of texas
How has Fibro affected your ability to work: i miss about 3 to 5 days a month. my job performance is almost none existing. i am constantly in pain
How has Fibro affected your life: i stay at home only time i'm out is when i have to work or visit doctor. no visiting family and friends. i can What were your first symptoms: not sure. it all start about 5yrs ago
Your age at onset of symptoms: 28
How fast was your rate of decline: i feel i got worse in a moderate time. my worse pains started about 2yrs ago. but i can think about from childhood and was always sick and hurting. my mother and sister told me how i woul complain of hurting and pain. had migraines and sinus problems since i was a child
What are your current symptoms: tiredness, stiffness, alot of hip and joint pain. with sinu infection
Number of years since you developed symptoms of fibromyalgia: about 5yrs.
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: past 3
Describe the extent of your brain fog: i can't rememder things that were just told to me. i make appointment and when look on calendar that morning but, when time arrives i have forgotten. at work have to be reminded of polocies and procedures by staff that i supervise.some things i remember happening, i remember them wrong and my days run togther.can't remember day to day what i have done.
Estimate number of doctors you have seen for Fibro related symptoms: 4
Do your doctors tend to focus on all your Fibro symptoms: no. they one or two symptoms and focus on only those
Do your doctors treat your symptoms individually or collectively: individually
Describe your experience with doctors: several have said i'm to yopung to feel the way i say i do. some act like i'm seeking drugs and i'm lieing about my symptoms.
What remedies or medications have you tried: several different theropies,excercises,walking. have tried many medications. paxil,norflex,flexaril,cembalta,savells,vicodone,ultram,xanax,depicote,lyrica,and zanaflex
What makes you feel better: alot of rest. took two week vacation. didn't start to feel better until i had been off for maybe 8or9 days
What makes you feel worse: doing to much physical activities. i wake from sleep in pain. i have to take a pain reliever and wait an hou or two before i can get up and start my day.
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: not to avoid neurotoxins. started a diet and lost 40lbs but, have gained 10 back.
Have you tried any thyroid specific treatments: no
Your theories or comments:
Are we missing any important questions: no.

10/14/2009
First Name: Dee
Age: 49
Male or Female: F
City: New York
State/Province: NY
Country: USA
How long have you lived there: 49
Where were you born: NYC
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: no
What is Your Line of Work: construction
How has Fibro affected your ability to work: cannot lift tools
How has Fibro affected your life: i dont know where my life is going
What were your first symptoms: I got into a car accident
Your age at onset of symptoms: 49
How fast was your rate of decline: very fast less than one year
What are your current symptoms: joint pain, muscle spasms, trigger points, fatigue, naseau.
Number of years since you developed symptoms of fibromyalgia: less than one
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: last few months
Describe the extent of your brain fog: I forget what I was thinking about or where I am
Estimate number of doctors you have seen for Fibro related symptoms: 7
Do your doctors tend to focus on all your Fibro symptoms: no
Do your doctors treat your symptoms individually or collectively: collectively
Describe your experience with doctors: pretty good, but they cant make me better
What remedies or medications have you tried: cymbalta, ultram, flexeril, darvesett, motrin
What makes you feel better: not thinking about it. Cymbalta
What makes you feel worse: moving dancing
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride: city water, pesticides
Have you made dietary changes to avoid any other neutrotoxins: no
Have you tried any thyroid specific treatments: cymbalta
Your theories or comments: this rots
Are we missing any important questions: no

10/13/2009
First Name: Connie
Age: 48
Male or Female: Female
City: Long Bottom
State/Province: Ohio
Country: US
How long have you lived there: 15 yrears
Where were you born: Weston, West Virginia
Is this the first time you have taken our questionnaire: Yes
If not, why are you returning:
Are you still working: Yes
What is Your Line of Work: Insurance
How has Fibro affected your ability to work: Pain & Brain Fog
How has Fibro affected your life: I dread everyday. It starts with the pain of getting out of bed that never ends. I don't enjoy family or friends anymore. I just dread having to clean and cook for them. I also dread shopping, my favorite thing.
What were your first symptoms: Pain that started in my lower back and ran down my right leg and out my big toe.
Your age at onset of symptoms: 48
How fast was your rate of decline: Very Fast.
What are your current symptoms: Headaches, neck & shoulder pain, lower back pain, leg & feet pain and swelling.
Number of years since you developed symptoms of fibromyalgia: 4
Do your symptoms include brain fog: Yes
Number of years since you developed the brain fog: 1
Describe the extent of your brain fog: Very hard to concentrate and can't remember anything anymore.
Estimate number of doctors you have seen for Fibro related symptoms: 5
Do your doctors tend to focus on all your Fibro symptoms: No
Do your doctors treat your symptoms individually or collectively: Collectively
Describe your experience with doctors: Except for my family doctor I think they thought I was crazy.
What remedies or medications have you tried: Lyrica, Neurontin, Cymbolta, Flexeril, Zoloft, Elavil, Vicodin, Tylenol, Provigil & Adipex
What makes you feel better: Vicodin & Provigil & Adipex. If I could just stay in bed and never move again.
What makes you feel worse: Cold weather & stress
Have you tried avoiding fluoride in your diet: No
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: No
Have you tried any thyroid specific treatments: No
Your theories or comments: Last summer I was put on Adipex because my Neurologist said my entire problem was my weight. I lost 60 lbs and felt better. I thought part of the problem was my weight, but after being taken off adipex I started to feel really bad again. I have put back on some weight, but I truley believe that Adipex has something in it that helps with Fibro, but because the FDA has only approved shot term use my doctor is afraid to put me back on it. I wish a study could be done, I would definitely apply for the trial!
Are we missing any important questions:

10/13/2009
First Name: Karen
Age: 56
Male or Female: Female
City: Graham
State/Province: TX
Country: USA
How long have you lived there: 56
Where were you born: Dallas, TX
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: No
What is Your Line of Work: Office Manager when I worked
How has Fibro affected your ability to work:
How has Fibro affected your life: Yes
What were your first symptoms: severe pain in arms, hands, legs, feet, numbness in torso and hips, low back, insomnia, very tired all the time, severe headaches, sometimes I cant walk, tremors, my body jerks at times, swelling
Your age at onset of symptoms: 56
How fast was your rate of decline: quick
What are your current symptoms: same as above
Number of years since you developed symptoms of fibromyalgia: 1
Do your symptoms include brain fog: no or i would know what that is
Number of years since you developed the brain fog:
Describe the extent of your brain fog:
Estimate number of doctors you have seen for Fibro related symptoms: 4
Do your doctors tend to focus on all your Fibro symptoms: no
Do your doctors treat your symptoms individually or collectively: individually
Describe your experience with doctors: one dr. says I have neuropathy and at first thought I has MS then last time I went bk to her she said she thinks I have Fibro along with the neuropathy, and another dr. said I was having TIA's and another says I have Graves Disease along with Neuropaathy and Fibro, and another agrees with the last dr. but something else is wrong with all the swelling I am getting even tho I am on lasix.
What remedies or medications have you tried: Depakote, Pain Management (which I am still in), Fentanyl patch 75 mgs, Hydroco 10-325 for breakthrough pain, Metprolol, Klor-Con. Methemazole
What makes you feel better: Nothing
What makes you feel worse: everything, I have not been me in over a year now.
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: No noone has talked to me about it
Have you tried any thyroid specific treatments: Just the medication named above
Your theories or comments:
Are we missing any important questions:

10/13/2009
First Name: Renae
Age: 56
Male or Female: female
City: Onsted
State/Province: MI
Country: US
How long have you lived there: 27 yrs.
Where were you born: Adrian, MI
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: no
What is Your Line of Work: Retired from GM
How has Fibro affected your ability to work: could only make it 3 or 4 times a week especially in winter.
How has Fibro affected your life: terrible pain, fog, IBS. nobody really believes when you say how bad you feel.
What were your first symptoms: Neck, shoulder and lower back pain.
Your age at onset of symptoms: diagnosed at 35, but have had symtoms sinse i can remember.
How fast was your rate of decline: medium
What are your current symptoms: fatigue Ibs fog pain cant sleep w/out drugs.
Number of years since you developed symptoms of fibromyalgia: 30+
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 15
Describe the extent of your brain fog: have to stop during conversations alot because i lose my train of thought. have to make lists and ask questions more than once.
Estimate number of doctors you have seen for Fibro related symptoms: 8
Do your doctors tend to focus on all your Fibro symptoms: now they do.
Do your doctors treat your symptoms individually or collectively: individually
Describe your experience with doctors: most don't believe, but am going to a Dr. Vallance in Ann Arbor, MI who is a rheumatologist and specializes in fibro and arthitises
What remedies or medications have you tried: lots that i don't remember the names of. am on thyroid, pain, depression, and sleep meds among others.
What makes you feel better: Sunshine.
What makes you feel worse: Rain and cold
Have you tried avoiding fluoride in your diet: not on purpose
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: not really
Have you tried any thyroid specific treatments: just meds.
Your theories or comments: I feel that trauma is a trigger. I also think it may be hereditary, as both of my girls have it.
Are we missing any important questions: Don't believeso.

10/12/2009
First Name: Heather
Age: 36
Male or Female: Female
City: Tega Cay
State/Province: SC
Country: USA
How long have you lived there: 5 years
Where were you born: Maryland
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: yes
What is Your Line of Work: Cardiology Research
How has Fibro affected your ability to work: I have tried not to let it affect my work but I sometimes have a hard time getting up in the morning due to stiffness and I am always fatigue and sometimes have brain fog
How has Fibro affected your life: I need more rest than most people my age
What were your first symptoms: Pain and ache when stressed or tired
Your age at onset of symptoms: 29
How fast was your rate of decline: slow, it has gotten worse in the past year
What are your current symptoms: achy, tired, brain fog
Number of years since you developed symptoms of fibromyalgia: 6
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 1-2
Describe the extent of your brain fog: I just feel like my brain is working slow and I am forgettful
Estimate number of doctors you have seen for Fibro related symptoms: 3
Do your doctors tend to focus on all your Fibro symptoms: no
Do your doctors treat your symptoms individually or collectively: both
Describe your experience with doctors: Not being able to figure out what is going on and attribute my symptoms to stress
What remedies or medications have you tried: I am working on an all natural, organic diet, regular exercise and 8 hours of sleep each night
What makes you feel better: All of the above
What makes you feel worse: Lack of sleep, stress, certain foods, cold weather
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: Trying to eat natural foods, no preservatives, avoiding processed foods
Have you tried any thyroid specific treatments: no
Your theories or comments:
Are we missing any important questions:

10/04/2009
First Name: Tamara
Age: 44
Male or Female: Female
City: Williston
State/Province: North Dakota
Country: USA
How long have you lived there: 6 years
Where were you born: Columbs, Ohio
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: yes
What is Your Line of Work: seasonal crop spraying semi truck driver book keeping
How has Fibro affected your ability to work: can't work some days can't concentrate
How has Fibro affected your life: pain is depressing sometimes feel no way out of it avoid going out, stay home alot
What were your first symptoms: chronic headaches back and shoulder pain pain in feet and legs
Your age at onset of symptoms: 21
How fast was your rate of decline: slowly until the past few years progressing faster now
What are your current symptoms: headaches back pain foot pain lack of sleep tired irratable bowel
Number of years since you developed symptoms of fibromyalgia: 23
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 5
Describe the extent of your brain fog: Can't think beyond the pain Today is the last day
Estimate number of doctors you have seen for Fibro related symptoms: 4
Do your doctors tend to focus on all your Fibro symptoms: no
Do your doctors treat your symptoms individually or collectively: individually
Describe your experience with doctors: don't understand
What remedies or medications have you tried: sleep darkness quite muscle relaxers all pain meds Lyrica
What makes you feel better: not much time heat
What makes you feel worse: cold exertion
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: no
Have you tried any thyroid specific treatments: no
Your theories or comments:
Are we missing any important questions:

10/01/2009
First Name: traci
Age: 34
Male or Female: female
City: warrenton
State/Province: va
Country: usa
How long have you lived there: 34
Where were you born: va
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: yes
What is Your Line of Work: medical
How has Fibro affected your ability to work: only at times
How has Fibro affected your life: fatigue and pain
What were your first symptoms: approx. 8 years ago
Your age at onset of symptoms: 28
How fast was your rate of decline:
What are your current symptoms: fatigue, muscle aches, poor sleep
Number of years since you developed symptoms of fibromyalgia:
Do your symptoms include brain fog: no
Number of years since you developed the brain fog:
Describe the extent of your brain fog:
Estimate number of doctors you have seen for Fibro related symptoms: 2
Do your doctors tend to focus on all your Fibro symptoms: no
Do your doctors treat your symptoms individually or collectively: collectively
Describe your experience with doctors: negative
What remedies or medications have you tried: ultram, plaquenil, methotrexate, flexeril
What makes you feel better: nothing
What makes you feel worse:
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride: unknown
Have you made dietary changes to avoid any other neutrotoxins: no
Have you tried any thyroid specific treatments: no
Your theories or comments:
Are we missing any important questions:

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