Fibromyalgia Questionnaire & Results

Latest Update: 05/21/2012

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23 QUESTIONNAIRE COMPLETED DATA FORMS FOR December 2011

12/30/2011
First Name: joanne
Age: 41
Male or Female: female
City: tyne and wear
State/Province: ---
Country: United Kingdom
How long have you lived there: 15 years
Where were you born: hexham
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: yes
How has Fibro affected your life: yes

History: had it for 20 yrs
Did You Ever Have A Long Lasting Virus: glan fever at 18
What were your first symptoms: so long cant remember . tiredness i think
What are your current symptoms: pain joints , tired , muscle pain, depression, eye ache head aches , nasal probs, ibs endrometreotis
Your age at onset of symptoms: 21
How fast was your rate of decline: within weeks
What are your current symptoms: pain joints , tired , muscle pain, depression, eye ache head aches , nasal probs, ibs endrometreotis
Number of years since you developed symptoms of fibromyalgia: 20
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 10 - 15
Describe the extent of your brain fog: cant remember few hours before walk into doors etc in house can remember where furniture is walk inti it
Estimate number of doctors you have seen for Fibro related symptoms: 25
Do your doctors tend to focus on all your Fibro symptoms: no
Do your doctors treat your symptoms individually or collectively: collectivly
Describe your experience with doctors: they put every syptom down to fms you worry you mite have sometning more serious and they mis it or the painkillers mask it
What remedies or medications have you tried: evertyhing
What makes you feel better: nothing
What makes you feel worse: lif
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
Your theories or comments: i want my life back
Are we missing any important questions:

12/29/2011
First Name: DORI
Age: 44
Male or Female: female
City: SEATTLE
State/Province: WA
Country: USA
How long have you lived there: 5
Where were you born: California
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:

History:
Did You Ever Have A Long Lasting Virus: No
What were your first symptoms: sores on toes, tingly feet
What are your current symptoms: burning feet, sore legs
Your age at onset of symptoms: 43
How fast was your rate of decline: slow
What are your current symptoms: burning feet, sore legs
Number of years since you developed symptoms of fibromyalgia: 3
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 3
Describe the extent of your brain fog: medium
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: no treatment
Describe your experience with doctors: lab work.
What remedies or medications have you tried: Vit D3, other vit supplements (over the counter)
What makes you feel better: nothing
What makes you feel worse: everything
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride: tap water (city water)
Have you made dietary changes to avoid any other neutrotoxins: Stopped eating dairy (already eating organics). Tried no carbs, tried restricted calories.
Have you tried any thyroid specific treatments: No. Thyroid labs fine. Did the diabetic blood test, normal.
Your theories or comments: Last week I tried raw organic coconut oil, this caused the start the Herxheimer reaction...but perhaps stopped too soon. Tried a teaspoon in the middle of the night again(feet burning and legs aching) and made my day miserable trying to take care of kids (pains in stomach from CO but symptoms calmed. There is no data referring to yeast as being the cause of severe feet burning and leg aching/pain. Anything I eat triggers foot burn.
Are we missing any important questions:

12/29/2011
First Name: Nicci
Age: 38
Male or Female: female
City: Lowell
State/Province: Michigan
Country: US
How long have you lived there: Lowell 4 yrs US lifetime
Where were you born: Lansing
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: yes
How has Fibro affected your life: Made it almost impossible to live. Cant live with drugs & cant live without them...

History: Mostly healthy...rare cold n flus
Did You Ever Have A Long Lasting Virus: No
What were your first symptoms: Aching rubberband like muscles
What are your current symptoms: Still struggling to get out of bed, constant pain.
Your age at onset of symptoms: 23
How fast was your rate of decline: very quickly, within a year I was bed ridden
What are your current symptoms: Still struggling to get out of bed, constant pain.
Number of years since you developed symptoms of fibromyalgia: 17
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 16
Describe the extent of your brain fog: constantly forgetting what I was about to say, what I was talking about, or where I was headed to get something & have to try two or three times before I figure it out...
Estimate number of doctors you have seen for Fibro related symptoms: 12-17
Do your doctors tend to focus on all your Fibro symptoms: nope
Do your doctors treat your symptoms individually or collectively: nope
Describe your experience with doctors: very difficult. I feel railroaded & bullied...just another "drug seeker"
What remedies or medications have you tried: Seriously?! Would be better for you to have a check list here! I couldn't begin to list EVERYTHING I have taken for the past 17 years! I could, but not sure how that is going to help me or anyone else on here. If I see it would be of benefit somewhere at the end, I'll fill it in later!
What makes you feel better: Soma, hot tub or hot shower.
What makes you feel worse: no soma, cold weather or rain.
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 sure what this means...
Have you tried any thyroid specific treatments: same as above...
Your theories or comments: I think it may not be deadly, but quality of life should still matter, and much research should go into making a Fibro patient feel their life is worth it to all researchers!
Are we missing any important questions: Some, like how many times has the pain almost been too much to endure to make it become "Deadly"! For me, several. When a flare up strikes, you would rather be dead!

12/28/2011
First Name: kay
Age: 41
Male or Female: female
City: thibodaux
State/Province: la
Country: usa
How long have you lived there: 41
Where were you born: thibodaux
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: state job
How has Fibro affected your ability to work: i miss alot of work due to pain
How has Fibro affected your life: before meds it was horrible. i was becoming deoressed because i felt like my body was falling apart. i felt like i was 90 yrs old.

History: 5 laparoscopies & 1 hystorectomy due to systolic ovaries, endometriosis. gland remove in my neck.
Did You Ever Have A Long Lasting Virus: yes! a common cold seemed to lingure longer than before and more intense.
What were your first symptoms: when i walked it felt like my bones in my feet were broken. my arms and hands would go completely numb. i was starting to notice that my hand strength had weaked due to being numb. my hips felt like they were dislocating. unfortunately sometimes the symtoms were all at the same time. Some mornings i had to crawl to the bathroom.
What are your current symptoms: hip, feet, and back at times
Your age at onset of symptoms: 35
How fast was your rate of decline: slow at first then became rapidly unbarable.
What are your current symptoms: hip, feet, and back at times
Number of years since you developed symptoms of fibromyalgia: 7
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 2
Describe the extent of your brain fog: very bad at times
Estimate number of doctors you have seen for Fibro related symptoms: 5
Do your doctors tend to focus on all your Fibro symptoms: now- yes. im seeing a specialist
Do your doctors treat your symptoms individually or collectively: collectively
Describe your experience with doctors: very frustrating at first. now ok
What remedies or medications have you tried: i'm on elevil, lyrica, and cymbalta
What makes you feel better: the meds
What makes you feel worse: when i first started treatment it was on low doses and i felt no relief. my dr slowly brought up the mg of meds and i can actually function again
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride: n/a
Have you made dietary changes to avoid any other neutrotoxins: no
Have you tried any thyroid specific treatments: no
Your theories or comments: without meds this disease is crippling and very painful. i still suffer from time to time but i can function again.
Are we missing any important questions: no

12/27/2011
First Name: jerri
Age: 26
Male or Female: female
City: taunton
State/Province: somerset
Country: england
How long have you lived there: 10 years
Where were you born: torquay, devon
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: cake decorator
How has Fibro affected your ability to work: cannot stand or sit for long periods, have to denote when i do these things so cannot have others tell me what to do
How has Fibro affected your life: am on benefits so very poor - and nobody will give me disability allowance because some days i am ok! yet they dont take in to consideration that most days im in a wheelchair

History: kidney infections, ibs, adhd, depression
Did You Ever Have A Long Lasting Virus: no
What were your first symptoms: pain when pregnant
What are your current symptoms: pain
Your age at onset of symptoms: 19
How fast was your rate of decline: within days
What are your current symptoms: pain
Number of years since you developed symptoms of fibromyalgia: 7
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 2
Describe the extent of your brain fog: used to have a brilliant memory now cant remember very much
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: individually
Describe your experience with doctors: nobody believes me! its terrible!
What remedies or medications have you tried: amitriptiline, tramadol, zapain
What makes you feel better: nothing
What makes you feel worse: tramadol as makes me dizzy
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:

12/27/2011
First Name: Julie
Age: 59
Male or Female: Female
City: Fredericksburg
State/Province: Virginia
Country: USA
How long have you lived there: 12 yrs
Where were you born: USA
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 am a homemaker
How has Fibro affected your ability to work: Yes. Lifting things, working for long periods of time, handling small objects, the pain takes over and I have to go to sleep if I can or lay down until the pain subsides.
How has Fibro affected your life: It rules my life. Without medication, Lyrica 50 mg, 5 to 6 times a day I would be laying on my couch or bed doing nothing but trying to live with the non stop pain in my arms, hands, legs, and feet. That is where it tends to show itself in my case.

History: Depression, Major Surgery-Hysterectomy(spelling)
Did You Ever Have A Long Lasting Virus: No
What were your first symptoms: Pain and numbness in my arms and feet
What are your current symptoms: Same as above
Your age at onset of symptoms: 57
How fast was your rate of decline: Very fast. It came on fast and by the time I could get into my neurologist I was at a point that I could barely walk or lift anything with my arms.
What are your current symptoms: Same as above
Number of years since you developed symptoms of fibromyalgia: 2
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 5
Describe the extent of your brain fog: Remembering names, my old addresses, talking about a subject and then just going blank...
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: Collectively
Describe your experience with doctors: Some are very ho-hum, and have told me its just carpel tunnel. Others are quite focused and very thourgh.
What remedies or medications have you tried: Lyrica, Cymbalta, Lunesta
What makes you feel better: The above combo.
What makes you feel worse: Trying to put too much into a day, traveling long distances by car or plane, lack of sleep, high stress. Eating too much sugar.
Have you tried avoiding fluoride in your diet: yes
If so, which sources of fluoride: tap water, toothpaste and eating more organic grains, veggies,and fruits.
Have you made dietary changes to avoid any other neutrotoxins: I work to avoid chemicals in cleaning products and in makeup.
Have you tried any thyroid specific treatments: No. But I just bought iodine to take. I have not taken any yet.
Your theories or comments: I believe the food we eat (unless fresh and organic), and the chemical exposures that are a constant in the USA are causing great harm to our society in general and will continue to produce new and more intense suffering in many ways.
Are we missing any important questions: ???

12/26/2011
First Name: Bobbi
Age: 31
Male or Female: Female
City:
State/Province: CA
Country: United States
How long have you lived there: Born there
Where were you born: CA
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: Chief Operations Officer
How has Fibro affected your ability to work: Yes tremendously
How has Fibro affected your life: In every possible way

History:
Did You Ever Have A Long Lasting Virus: No
What were your first symptoms: Neck pain and fatigue
What are your current symptoms: Same as above
Your age at onset of symptoms: 20
How fast was your rate of decline: Almost immediate and has continually gotten worse. I am 31 now and ten years after onset I often wonder how I will feel in another 10 years.
What are your current symptoms: Same as above
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: 5
Describe the extent of your brain fog: Inability to focus, Unable to get the words out. Lack of concentration
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: individually
Describe your experience with doctors: They make me feel lik ea hypochondriac so I have stopped all treatment and do my best to deal with it
What remedies or medications have you tried: everything you can think of the doctors initially gave me and nothing helped
What makes you feel better: heat
What makes you feel worse: stress, Lack of sleep
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: I eat a clean diet
Have you tried any thyroid specific treatments: no but my thyroid levels have been checked multiple times with a normal range
Your theories or comments:
Are we missing any important questions:

12/26/2011
First Name: Christina
Age: 45
Male or Female: Female
City: Springfield
State/Province: MO
Country: USA
How long have you lived there: 6 years
Where were you born: Taiwan China
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: media
How has Fibro affected your ability to work: Brain fog with the inability to remember things. Chronic fatigue which makes me need a nap during the day, even if I slept several hours. Pain makes it difficult to do what I once did.
How has Fibro affected your life: I can't always keep plans. I find myself not having an interest in doing anything other than staying home in my free time. It is hard for much of my family to understand that I can't keep up with simple things many days.

History: I have had Hep B, my appendix out, gall-stones and gallbladder removal, kidney stones which required a surgical removal, and arthritis.
Did You Ever Have A Long Lasting Virus: I think I have, but not for sure. I have had bouts of long lasting flu, colds, pneumonia and bronchitis.
What were your first symptoms: As I think back to my childhood, I had very sever growing pains. I wonder if this was a sign. The biggest onset though was 5 years ago with the chronic fatigue and brain fog. I would find myself going home for an extended lunch hour just so I could take an hour nap two to three days a week.
What are your current symptoms: A nap is needed mid-day three days a week at the minimum just to get rid of brain fog. I wake up in pain and go to bed with pain. Very low energy on most days, especially trying to get around for work in the mornings.
Your age at onset of symptoms: 40
How fast was your rate of decline: more symptoms seemed to apear every few months. When I had my kidney surgery last year, I feel like this was the biggest onset of everything all at once.
What are your current symptoms: A nap is needed mid-day three days a week at the minimum just to get rid of brain fog. I wake up in pain and go to bed with pain. Very low energy on most days, especially trying to get around for work in the mornings.
Number of years since you developed symptoms of fibromyalgia: I believe as I look back, it has been going on for 35-years slowly.
Do your symptoms include brain fog: Yes
Number of years since you developed the brain fog: 5
Describe the extent of your brain fog: On days that I have it - which is a minimum of three days a week I become forgetful, I can't remember what I was doing. I find it har to complete tasks. I become very fatigued. My pain level seems to inclrease after a bout with 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: yes
Do your doctors treat your symptoms individually or collectively: Both
Describe your experience with doctors: My doctors seem to understand fibromyalgia, but I do believe they don't understand it totally. They treat on what medical science has told them. Narcotics have always seemed to help keep pain tolerable for me, but my doctors do not believe in using these drugs on an ongoing basis.
What remedies or medications have you tried: Too many to remember.
What makes you feel better: A good massage helps.
What makes you feel worse: bending or lifting.
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: I have tried a variety of forms.
Have you tried any thyroid specific treatments: no
Your theories or comments: I think doctors should listen more to their patients, instead of prescribing drugs just because it has worked for someone else, or the company has given approval to a certain drugs use. I also think doctors should not find fear to prescribe something to a patient if it works just fo fear of being questioned on the prescription of narcotics. I would rather take a narcotic to mask the pain, since there is no cure, just so I can do normal things.
Are we missing any important questions: Sleeping patterns

12/21/2011
First Name: Jeanne
Age: 42
Male or Female: Female
City: Romeoville
State/Province: IL.
Country: USA
How long have you lived there: 1 yr
Where were you born: New York
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: Quality Auditor
How has Fibro affected your ability to work: Im pretty stiff and tired in the mornings so its difficult sometimes to come towork.
How has Fibro affected your life: I dont go out much to have fun anymore. Only business.

History: anemia headaches
Did You Ever Have A Long Lasting Virus: mono
What were your first symptoms: could not sleep pain in my legs and hips rain would make me very sick
What are your current symptoms:
Your age at onset of symptoms:
How fast was your rate of decline:
What are your current symptoms:
Number of years since you developed symptoms of fibromyalgia:
Do your symptoms include brain fog:
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:
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:
What makes you feel better:
What makes you feel worse:
Have you tried avoiding fluoride in your diet:
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins:
Have you tried any thyroid specific treatments:
Your theories or comments:
Are we missing any important questions:

12/21/2011
First Name: Irene
Age: 73
Male or Female: Female
City: Sydney
State/Province: NSW
Country: Australia
How long have you lived there: 44years
Where were you born: Scotland
Is this the first time you have taken our questionnaire: Not sure
If not, why are you returning:
Are you still working: No
What is Your Line of Work: Retired teacher
How has Fibro affected your ability to work: Totally unable to work in school after age of 56 but able to do private tutoring at home until age 60
How has Fibro affected your life: No social life at all. No physical exercise possible. Unable to do house work or gardening

History: No other problems
Did You Ever Have A Long Lasting Virus: No
What were your first symptoms: Fibrositis as a child.
What are your current symptoms: Muscle pain, insomnia, hot flushes, cough, irritable bowel, weight gain,hair loss, painful coccyx, memory loss.
Your age at onset of symptoms: 12. 20. 30. 43. 56
How fast was your rate of decline: Able to live with it until age of 43 .Sudden back spasms since then every 6months or so except for a few years when I regained my health completely.
What are your current symptoms: Muscle pain, insomnia, hot flushes, cough, irritable bowel, weight gain,hair loss, painful coccyx, memory loss.
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: 16
Describe the extent of your brain fog: Hard to remember names.
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: Individually
Describe your experience with doctors: Not interested , don't believe me, look at me a Sid I am crazy.
What remedies or medications have you tried: Voltarin (useless), panadol (useless), codeine, neurofen, aspirin helps a bit
What makes you feel better: Heating pad, aspirin, heat rub, a nap
What makes you feel worse: Exercise, standing, stress
Have you tried avoiding fluoride in your diet: Yes
If so, which sources of fluoride: Tap water
Have you made dietary changes to avoid any other neutrotoxins: Preservatives, particularly in processed meat
Have you tried any thyroid specific treatments: No
Your theories or comments: After reviewing my several times of having the problem and the several times I have completely recovered I am absolutely convinced that the preservative sodium nitrate is the sole cause. I look forward to a complete recovery in the future when all the toxins will be gone as has happened before.
Are we missing any important questions: I think you co Uld ask specific questions about diet.

12/18/2011
First Name: John
Age: 52
Male or Female: Male
City:
State/Province: CT
Country: USA
How long have you lived there: 20 years
Where were you born: New York
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: It has made it very difficult be be reliable due to pain, fatigue, inability to concentrated and , at its worst, an inability to walk.
How has Fibro affected your life: I spend a lot more time resting and exercising. It has limited my ability to travel and number of productive hours during a day.

History: Nothing unusual
Did You Ever Have A Long Lasting Virus: no.
What were your first symptoms: fatigue and inability to concentrate
What are your current symptoms: as above, pain (severe) fatigue, nausea
Your age at onset of symptoms: 49
How fast was your rate of decline: slow but steady. One day the pain became so severe that I passed out and fell down stairs.
What are your current symptoms: as above, pain (severe) fatigue, nausea
Number of years since you developed symptoms of fibromyalgia: 3
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 3
Describe the extent of your brain fog: if you mean inability to concentrate, it includes poor memory, lack of focus and ability to complete projects
Estimate number of doctors you have seen for Fibro related symptoms: 6
Do your doctors tend to focus on all your Fibro symptoms: yes. my current doctor is a Rheumatologist.
Do your doctors treat your symptoms individually or collectively: Both, depending on the urgency of my need.
Describe your experience with doctors: Most Drs did not know what to make of my symptoms. The rheumatologist gave them a name, a context and a plan for managing them
What remedies or medications have you tried: nortryptaline, Cymbalta, Baclofen and Ultram for severe symptoms and the anticipated onset of severe symptoms
What makes you feel better: sleep, exercise, purposeful work
What makes you feel worse: lack of sleep, travel, lack of exercise
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: yes
Your theories or comments: sometimes a challenge to distinguish between FM symptoms and my Rheumatoid Arthritis symptoms
Are we missing any important questions: you might ask what information sources people trust. Many sites are geared towards women and women's sensibilities. As a man, I don't find many sources of help and info that are trustworthy and honest. I am not looking for recognition for my condition, as many seem to. I am looking for for what facts and hope are actually available.

12/16/2011
First Name: Valerie
Age: 31
Male or Female: Female
City: Boynton Beach
State/Province: FL
Country: USA
How long have you lived there: 31 years
Where were you born: New York
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: event planning
How has Fibro affected your ability to work: I just eventually could not keep up with work.
How has Fibro affected your life: 150% yes. I can barely get dressed, brush my hair. I have such difficulty with little things, everything hurts from the gums in my mouth to the tips of my toes.

History: Celiac Disease
Did You Ever Have A Long Lasting Virus: Not Sure
What were your first symptoms: Flu Like feeling
What are your current symptoms: Thinking, depression, weight gain from inactivity, flu like feeling, joints hurt, aches, headaches...and alot more
Your age at onset of symptoms: 28
How fast was your rate of decline: 2yrs
What are your current symptoms: Thinking, depression, weight gain from inactivity, flu like feeling, joints hurt, aches, headaches...and alot more
Number of years since you developed symptoms of fibromyalgia: 3
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 3
Describe the extent of your brain fog: medium
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: poor
What remedies or medications have you tried: cymbalta
What makes you feel better: phentermine, roxycodine
What makes you feel worse: inactivity, lack of movement
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride: toothpaste
Have you made dietary changes to avoid any other neutrotoxins: yes, but I still had pain
Have you tried any thyroid specific treatments: no
Your theories or comments: I cant stand living with this at 31 years old there has got to be something that could be done
Are we missing any important questions: any other case studies or local stuff I am happy to help: valsantabarbara@aol.com

12/16/2011
First Name: Kimberly
Age: 42
Male or Female: Female
City: Fountain Valley
State/Province: CA
Country: USA
How long have you lived there: 32 Years
Where were you born: Kansas
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: Payroll
How has Fibro affected your ability to work: Yes
How has Fibro affected your life: Yes

History: Had MRSA a couple years ago. Have had 3 surgeries in the last 3 years.
Did You Ever Have A Long Lasting Virus: Yes-MRSA
What were your first symptoms: IBS, Pain
What are your current symptoms: Acute Pain
Your age at onset of symptoms: 39
How fast was your rate of decline: months
What are your current symptoms: Acute Pain
Number of years since you developed symptoms of fibromyalgia: 3 years
Do your symptoms include brain fog: Yes
Number of years since you developed the brain fog: 3
Describe the extent of your brain fog: I will be talking to my son about him going surfing and instead of say "surfing" I will say a totally different word like "driving". I always forget what I was going to buy, or say, or do.
Estimate number of doctors you have seen for Fibro related symptoms: 6
Do your doctors tend to focus on all your Fibro symptoms: yes
Do your doctors treat your symptoms individually or collectively: yes
Describe your experience with doctors: Overall very good. They are very aware of the illness.
What remedies or medications have you tried: B-12, hotbaths, pain medicine,Lyrica,cymbalta,trazadone, gababentin
What makes you feel better: Hot baths, Jacuzzi, Steam room
What makes you feel worse: when it rains, and 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: I eat all organic and fresh food now.
Have you tried any thyroid specific treatments: no
Your theories or comments:
Are we missing any important questions:

12/13/2011
First Name: cidalia
Age: 52
Male or Female: feminino
City: portimao
State/Province: algarve
Country: portugal
How long have you lived there: 35 anos
Where were you born: portugal

Is this the first time you have taken our questionnaire: sim
If not, why are you returning:
Are you still working: sim
What is Your Line of Work: administração/direc

How has Fibro affected your ability to work: menor capacidade para resolver problemas
How has Fibro affected your life: menos interesse na vida social e familiar

History: saudavel até aos 48 anos aos 43 fiz esterectomia total
Did You Ever Have A Long Lasting Virus: não
What were your first symptoms: tensão baixa, desmaios, irritações cutaneas,dores em todos os musculos do corpo,inchaço nos ossos dos pés e mãos,insónia, pesadelos,irritabilidade, colon irritável, candidiase vaginal, dortes de estomago, irritação nos olhos, palpitações/arritmias
What are your current symptoms:
Your age at onset of symptoms: 49
How fast was your rate of decline: muito rápida
What are your current symptoms:
Number of years since you developed symptoms of fibromyalgia: 4
Do your symptoms include brain fog: sim
Number of years since you developed the brain fog: 4
Describe the extent of your brain fog: periodos de esquecimento total. não me lembro do assunto que estou a discutir
Estimate number of doctors you have seen for Fibro related symptoms: 23
Do your doctors tend to focus on all your Fibro symptoms: nao
Do your doctors treat your symptoms individually or collectively: individualmente
Describe your experience with doctors: terrivel. dizem que estou velha e com depressão. outros dizem que a minha doença não existe. nunca falaram em fibro
What remedies or medications have you tried: paroxetina e mais outros 20 que nunca tomei
What makes you feel better: paroxetina
What makes you feel worse:
Have you tried avoiding fluoride in your diet: nao
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: nao
Have you tried any thyroid specific treatments: nao tenho problemas na tiroide
Your theories or comments: o ultimo médico disse que tinha fbro. diz que não há cura. tenho medicamentos, mas ainda não iniciei o tratamento
Are we missing any important questions:

12/13/2011
First Name: Tammy
Age: 50
Male or Female: Female
City: Colorado Springs
State/Province: CO
Country: USA
How long have you lived there: 3 years
Where were you born: Kansas
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: teacher
How has Fibro affected your ability to work: productivity affected by brain fog and pain.
How has Fibro affected your life: have to push myself all the time to complete tasks. Can't take care of the house.

History:
Did You Ever Have A Long Lasting Virus: not that I know of
What were your first symptoms: pain, severe fatigue, woke up at 2:00 am every morning
What are your current symptoms: pain, severe fatigue, brain fog, wake up with tingling in arms and legs
Your age at onset of symptoms: 33
How fast was your rate of decline: fast
What are your current symptoms: pain, severe fatigue, brain fog, wake up with tingling in arms and legs
Number of years since you developed symptoms of fibromyalgia: 17
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 17
Describe the extent of your brain fog: can't complete sentences at times., get lost, forget what I am doing
Estimate number of doctors you have seen for Fibro related symptoms: 6
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 good, some bad
What remedies or medications have you tried: zoloft, imiprimine, flexeril,
What makes you feel better: rest, lack of stress
What makes you feel worse: 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:
Are we missing any important questions:

12/11/2011
First Name: Virginina
Age: 55
Male or Female: female
City: Sault Ste Marie
State/Province: Michigan
Country: U.S.A
How long have you lived there: most of my life
Where were you born: Sault Ste Marie, MI
Is this the first time you have taken our questionnaire:
If not, why are you returning:
Are you still working: Yes
What is Your Line of Work: home Vistor for a tribal Head Start/Early Head Start Program
How has Fibro affected your ability to work: i am still working but some days its very hard to go because of being in either/or pain, exhausted
How has Fibro affected your life: Uable to do most of the thing I love to do such as jgoing for a long walking

History: I dont have anything except the fibromyalgia and sleeping disorder
Did You Ever Have A Long Lasting Virus: Had hepitits A as a young child and Shingles recently
What were your first symptoms: exhaustion, skin senstivity,
What are your current symptoms: exhaustion very painful pain, skin sensiivity, forgetful some days worse than others
Your age at onset of symptoms: 55
How fast was your rate of decline: the past few months it has gotten worse
What are your current symptoms: exhaustion very painful pain, skin sensiivity, forgetful some days worse than others
Number of years since you developed symptoms of fibromyalgia: this has just recently been diagnosed
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: about about a year
Describe the extent of your brain fog:
Estimate number of doctors you have seen for Fibro related symptoms:
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:
What makes you feel better:
What makes you feel worse:
Have you tried avoiding fluoride in your diet:
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins:
Have you tried any thyroid specific treatments:
Your theories or comments:
Are we missing any important questions:

12/11/2011
First Name: Joanne
Age: 34
Male or Female: Female
City: Joahannesburg
State/Province: Gauteng
Country: SA
How long have you lived there: all my life
Where were you born: Johannesburg
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: high school teacher
How has Fibro affected your ability to work: yes
How has Fibro affected your life: I'm constantly exhausted, have widesprad body and abdominal pain. I don't think properly and have lost energy to plan my day and take note of the 'details' in my family's life. Have been really down, even felt suicidal (would never do it though). I hve to work, and I know that without my income we cannot survive - added pressure as I feel I just can't. Also, I feel desponent because it always seems to oyhers that ther's always something wrong with me, I also feel that I complain a lot. I do this though, as we do not have enough funds to keep up physical therapy. Have just started a drug called Cymbalta, and worried that it's making me nauseas. Sorry to complain so much! I have just been diagnosed

History: had chronic back pain in 2010, gynae suggestedf hysterectomy - had one - and than had a bladder nick which was only detected 10 months later - had formed a uretral fistula - nearly died - major surgery in April this year - Fistula Repair
Did You Ever Have A Long Lasting Virus: glandular fever
What were your first symptoms: very tired, body stiffness everywhere, terrible lower backpain (subsiding during the day), funny headaches and neck pain, bloating, loss in concentration (and I'm uasually really good with detail!)
What are your current symptoms: Exactly the same as above, and I get ulcers, swollen lymph nodes at times, thrush
Your age at onset of symptoms: 33
How fast was your rate of decline: about a year to get where I am - although I was sick with the fistula
What are your current symptoms: Exactly the same as above, and I get ulcers, swollen lymph nodes at times, thrush
Number of years since you developed symptoms of fibromyalgia: 10 months, more so inthe last 2 months
Do your symptoms include brain fog: a lot
Number of years since you developed the brain fog: 6 months
Describe the extent of your brain fog: inability to concentrate,. short term memory loss of details, even people's names, tele numbers, 'laeving stuff on the stove'
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, although now, my physician has diagnosed fibromyalgia. He has not said much
Describe your experience with doctors:
What remedies or medications have you tried: have just started cymbalta and nexium
What makes you feel better: hot baths, massages, sleepimg pills
What makes you feel worse: exercise, overeating, quick movements, like walking or running hurts my muscles and stomach
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, but try not to eat preservatives
Have you tried any thyroid specific treatments: no
Your theories or comments:
Are we missing any important questions:

12/10/2011
First Name: fashion
Age: 32
Male or Female: female
City: howell
State/Province: mi
Country: u.s
How long have you lived there: 32 years
Where were you born: wayne county
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 secretary
How has Fibro affected your ability to work: disabled
How has Fibro affected your life: terribly bad-in bed most of the time, excruciating pain, horrible fatigue, back spasms, neck pain, cant do household chores cant play with my kids, cant sleep,cant wear earrings, necklaces because of the nerve pain, my husband wants to commit suicide because everything is on him,

History: asthma, allergies
Did You Ever Have A Long Lasting Virus: no
What were your first symptoms:
What are your current symptoms: hypersensitive nerve pain, back spasms cant move my neck, shoulders are painful radiating down the back of my arms, band of pain across my upper back,pain behind both shoulder blades, mid bsck hurts, lower back hurts and radiates into my butt and down my left leg, both hips are painful
Your age at onset of symptoms: 15
How fast was your rate of decline: slowly, but surely by age 27 was in a car accident and now I am basically crippled with pain-Fibro has flared up tremendously-I am now age 32-cant move
What are your current symptoms: hypersensitive nerve pain, back spasms cant move my neck, shoulders are painful radiating down the back of my arms, band of pain across my upper back,pain behind both shoulder blades, mid bsck hurts, lower back hurts and radiates into my butt and down my left leg, both hips are painful
Number of years since you developed symptoms of fibromyalgia: had only a few symptoms before car accident, now from point of car accident at age 27 to now age 32-6 years of excruciating pain-before that 12 years of fatigue, neck pain nerve damage-I knew I had something then but noone understood it not even parents or docs until recently
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: really started after I had my babies age 28, a year after accident
Describe the extent of your brain fog: memory problems its weird sometimes I can remember great and sometimes its like I mental cant remember anything-dont understand this, when I am down I confuse words, word meanings its crazy-its a brain fog.
Estimate number of doctors you have seen for Fibro related symptoms: 6
Do your doctors tend to focus on all your Fibro symptoms: newly diagnosed, saw 6 docs before fibro diagnosis
Do your doctors treat your symptoms individually or collectively: not applicable
Describe your experience with doctors: terrible no one understands your pain, no one thinks of fibro as a diagnosis, they treat you like your all u want is drugs when all u want is to be out of pain with out meds
What remedies or medications have you tried: everything-cymbalta, lyrica, flexeril, vicodin, oxycodone, Oxycontin,naproxen, baclofin, patches, toridol shots, massage, chiropracter, acupuncture,physical therapy, bengay
What makes you feel better: heat, injections-trigger point, bengay
What makes you feel worse: ant type of physical movement,household chores, stress neck compression from physical therapy,
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride: no
Have you made dietary changes to avoid any other neutrotoxins: no
Have you tried any thyroid specific treatments: no
Your theories or comments: There is so much I could contribute from my knowledge. I know in my heart stress brings on this chronic condition-mental stress-I was severly stressed as a child due to alcholic parent, being teased at school, I think my body is acting sick due to partly chronic stress/ could possibly be linked to families that grow up in severly stressful households when they are a child. This I am not sure of either Fibro causes depression or depression plays a ppart in fibro. I have been chronically depressed since I was a child. I can tell you my background, but I am really not sure if this is linked-I was an alcholic from age 21 to age 26. Was on effexor by age 25 150mg. my diet was and is garbage I know that-I think it plays a role because I notice my symptoms get slightly better by taking vitamins and eating better, I drink a lot of pop-when I was a teenager all I drank was diet pop-never drank water and still have a hard time with it. Although physical activity harms me especially lifting this-I notice that getting out of bed earlier and getting sunshine by walking outdoors helps-just minimal activity can help. Your mind set plays a role-if you think its going to be a crappy day painwise -pain is worse than thinking positive-may sound dumb-but that easy transition calms down your mind and reduces stress/anxiety.
Are we missing any important questions:

12/08/2011
First Name: Jennifer
Age: 28
Male or Female: F
City: Brookline
State/Province: MA
Country: US
How long have you lived there: 2 years
Where were you born: Santiago, Chile
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: Office work-making calls, sending emails
How has Fibro affected your ability to work: I was bed ridden for 3 years. After finding an alternative healing approach the pain is down sufficient enough for me to work. I just started working in June.
How has Fibro affected your life: It has completely overhauled my life. It has an influence over every aspect of it. Mostly it is very hard to relate to people and be in a good mood when you are in so much pain. To be physically disabled or know that I can't do the things I want to do can cause a lot of depression for me. Initmate relationships really suffer.

History: Diagnosed with Fibromyalgia 4 years ago. Refused to take Wellbutrin or other synthetic drugs for it.
Did You Ever Have A Long Lasting Virus: No.
What were your first symptoms: Just felt like I got a flu that wouldn't go away.
What are your current symptoms: After alternative healing methods all of the above symtoms are 98% gone, except for the chronic fatigue, which is still persistent.
Your age at onset of symptoms: 24
How fast was your rate of decline: I had no help available to me so it was pretty immediate.
What are your current symptoms: After alternative healing methods all of the above symtoms are 98% gone, except for the chronic fatigue, which is still persistent.
Number of years since you developed symptoms of fibromyalgia: 4 years
Do your symptoms include brain fog: yes!!!
Number of years since you developed the brain fog: 3
Describe the extent of your brain fog:
Estimate number of doctors you have seen for Fibro related symptoms:
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:
What makes you feel better:
What makes you feel worse:
Have you tried avoiding fluoride in your diet:
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins:
Have you tried any thyroid specific treatments:
Your theories or comments:
Are we missing any important questions:

12/07/2011
First Name: Deborah
Age: 55
Male or Female: Female
City: Sacrameno
State/Province: CA
Country: USA
How long have you lived there: 30 years
Where were you born: born in CA but grew up in VA
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: Elementary school teacher
How has Fibro affected your ability to work: Because of fibrofog and pain, I have trouble planning and organizing my lessons and materials. I am too tired at the end of the day to prepare for the next day. I am too groggy from meds to get up early enough to prepare before school. I have trouble focusing and remembering all of the details that I need to keep track of. I sometimes call kids by the wrong name, even though I know their names. I have been formally reprimanded for picking up kids late from recess because I forgot the time.
How has Fibro affected your life: It has impacted my social life greatly. I don't have people over much, because to clean house and prepare food takes too much energy. I don't drive very much because I'm afraid to with all of the medications I take. I have occasionally gotten lost in a relatively familiar area. I forget things like my phone number, and it is embarrassing. And it has destroyed my career that I obtained an MA for.

History: In high school I started having severe pains in my abdomen and lots of irritability, I was diagnosed with a "hormone imbalance" and put on hormones, but I don't know what. It did fix my symptoms.I had tonsillitis at age 15 and had my tonsils removed. My mother says she remembers me having fibro symptoms from an early age of 10 to 12 years, but I remember my first symptoms when I was 18. They progressively worsened, and after the birth of my second daughter, I started having joint pain in my fingers and severe brain fog. I was diagnosed with both low thyroid and fibromyalgia (fibrocytis is what they called it then).I have since been diagnosed with osteo-arthritis and depression. I am undergoing surgery on my foot for the arthritis.
Did You Ever Have A Long Lasting Virus: Not long-lasting, but I have had many unexplained illnesses that were always attributed to viruses by my unexcitable parents. Once I woke up in the morning and literally could not move my head because of extreme neck pain, which lasted several days. I also grew up in a rural area and have been bitten by score of ticks.
What were your first symptoms: Pain in my upper back.
What are your current symptoms: Dozens of very sore spots that feel like severe bruises, stiffness and aching, insomnia, depression, brain fog
Your age at onset of symptoms: 18
How fast was your rate of decline: It was pretty bad by 10 years from onset. The doctors are always told to reassure us that our condition will not get worse, and that is supposed to comfort us.I am 55, and it has gotten progressively worse.
What are your current symptoms: Dozens of very sore spots that feel like severe bruises, stiffness and aching, insomnia, depression, brain fog
Number of years since you developed symptoms of fibromyalgia: 38
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 20
Describe the extent of your brain fog: It is disabling. It is the main reason I had to stop working this year.
Estimate number of doctors you have seen for Fibro related symptoms: 15
Do your doctors tend to focus on all your Fibro symptoms: no
Do your doctors treat your symptoms individually or collectively: somewhat collectively
Describe your experience with doctors: My current doctor is the most understanding that I have had, but that is not saying a lot. It took years and lots of switching before I found someone who would treat my pain. My current doctor is treating my symptoms, but he also thinks he is going to cure me and send me back to work. I don't think so.
What remedies or medications have you tried: Elavil, Sinequain, Welbutrin, Tramadol, Endocet, Flexeril, Topamax. Guifennisen,Feldene, Relafen, magnesium, vit. D, tart cherry juice, l-carnitine, fish oil,Alpha GPC. I have changed my diet to plant based, no processed food diet, go to a physical therapist and chiropractor, get regular massages through a massage school, and I do water aerobics and Pilates regularly. I also went to a faith healer. Stopping my job was probably the most effective "remedy".
What makes you feel better: Sinequan,Welbutrin, Endocet,Flexeril,Topomax,Feldene, Fish Oil. Jury's still out on the other supplements.Water aerobics and changing my diet, along with the subsequent weight loss of 65 pounds has made a huge positive difference. Rest, pacing myself.Massages, chiropractor and physical therapy all seem to help. Pilates on the reformer is good.
What makes you feel worse: Stress, physical work. I can do an hour or so of housework or shopping, then i have to rest.
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:
Have you tried any thyroid specific treatments: I take levothyroid
Your theories or comments: I think there is something going on in the brain that affect the entire endocrine system.
Are we missing any important questions: I wonder if tonsil removal might have anything to do with it. Also, many people think fibromyalgia and Lyme disease are the same thing--so perhaps ask about tick bites. I would just like to see a really thorough investigation of what factors we have in common that could possibly be causing this mysterious illness.

12/06/2011
First Name: Gayle
Age: 41
Male or Female: Female
City: Clementon
State/Province: NJ
Country: USA
How long have you lived there: 7 years
Where were you born: Camden, NJ
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: legal asst.
How has Fibro affected your ability to work: miss alot of time due to pain and fatigue
How has Fibro affected your life: besides missing alot of work, I can't do as much as I used to. I get short of breath. Can only walk a block before I get extreme fatigue. Pain and weakness in my upper body is worsening

History: Fibromyalgia, Lupus, asthma and depression
Did You Ever Have A Long Lasting Virus: yes
What were your first symptoms: muscle pain and fatigue
What are your current symptoms: see above
Your age at onset of symptoms: 28
How fast was your rate of decline: relatively slow
What are your current symptoms: see above
Number of years since you developed symptoms of fibromyalgia: 13
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 4
Describe the extent of your brain fog: mostly short term memory loss and poor concentration
Estimate number of doctors you have seen for Fibro related symptoms: 6
Do your doctors tend to focus on all your Fibro symptoms: mostly
Do your doctors treat your symptoms individually or collectively: individually
Describe your experience with doctors: not too satisfied
What remedies or medications have you tried: cymbalta (among other anti-depressants), lyrica, muscle relaxers, various pain meds, muscle creams. Home remedies like peppermint oil on muscles, epsom salt baths
What makes you feel better: cymbalta, lyrica and home remedies
What makes you feel worse: my job makes the pain worse. Poor sleep also makes pain worse.
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: magnesium seems to be quite helpful with muscle pain. Vitamins do help a little with the fatigue.
Are we missing any important questions:

12/06/2011
First Name: Joyce
Age: 54
Male or Female: f
City: newbury
State/Province: oh
Country: usa
How long have you lived there: 3 years
Where were you born: painesville oh
Is this the first time you have taken our questionnaire: yes
If not, why are you returning: n/a
Are you still working: y
What is Your Line of Work: customer service / cashier
How has Fibro affected your ability to work: yes
How has Fibro affected your life: pain shuts me down, tired, and feel stupid, depressed

History: broken leg, skin cancer, c-section, 5 kids, b deficiency, domestic violence, pneumonia, bronchitis, ear infections
Did You Ever Have A Long Lasting Virus: yes, fever 105
What were your first symptoms: pain neck, pain hips
What are your current symptoms: affected by weather change to worse, some days inoperable, tired, depressed pain cannot sleep
Your age at onset of symptoms: 40
How fast was your rate of decline: worse each year
What are your current symptoms: affected by weather change to worse, some days inoperable, tired, depressed pain cannot sleep
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: immediate with onset pain monopolizes
Describe the extent of your brain fog: mistakes, forgetful, forget what time I work to or start
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: medicate the pain, one massaged
What remedies or medications have you tried: heat hot baths - vitamins, morphine, wine, aleve, massage cushion prayer
What makes you feel better: heat sleep hot weather, hot water, massage
What makes you feel worse: cold, lack of sleep, anxiety, not drinking enough water
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride: water, toothpaste
Have you made dietary changes to avoid any other neutrotoxins: yes, avoid artificial sweetners, avoid msg, preservatives
Have you tried any thyroid specific treatments: no
Your theories or comments: some kind of vitamin deficiency is causing inflammation, possibly a yeast or virus infection
Are we missing any important questions: do you feel suicidal

12/04/2011
First Name: carole
Age: 55
Male or Female: female
City: karkur
State/Province: karkur
Country: israel
How long have you lived there: 20 years
Where were you born: australia
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: yes (very part time)
What is Your Line of Work: Fund raising, writing.
How has Fibro affected your ability to work: significantly reduced cognitive abilities, lack of motivation, fatigue both physical and mental, pain on sitting too long, pain from working in uncomfortable settings (eg height of keyboard, chair, noise level, air temperature)
How has Fibro affected your life: loss of enjoyment from stopping recreation and exercise activities, including swimming, riding, exercise classes etc. loss of enjoyment from sex. loss of pleasure excitement derived from close relationships (my children in particular) loss of motivation in general, affecting plans for leisure, work and family life

History: chronic neck pain from late 20s first infection of mononucleosis in mid teens second infection of mononucleosis in early 40s resulting in chronic fatigue and diagnosis of fibromyalgia
Did You Ever Have A Long Lasting Virus: 2 incidences many years apart of mononucleosis. The first had me bedridden for almost 3 months with a slow recovery afterwards. The second was life changing - I feel like I became ill with mono and never recovered.
What were your first symptoms: i believe that i began suffering from fibromyalgia in my teens, but with mild and slow onset of symptoms. i suffered chronic and often disabling neck pain for 14 years until i was put on meds for fibromyalgia and the neck pain slowly faded into discomfort. other early symptoms were parasthesia on the left side, heightened sensitivity to temperature and light, frequent headaches, muscle spasms. also difficulty in feeling comfortable eg in bed, which i always attributed to the neck pain
What are your current symptoms: physical fatigue, mental fatigue (brain fog), chronic forgetfulness, ibs, restless leg syndrome, muscle pain (especially after exertion), muscle spasms, parasthesia (left side only), intermittent dizziness, infrequent bouts of rapid heart rate
Your age at onset of symptoms: onset of first symptoms - 17
How fast was your rate of decline: gradually worsening with life stressors like pregnancy and caring for young children, until second infection of mononucleosis when symptoms became so severe it was impossible to continue regular activities
What are your current symptoms: physical fatigue, mental fatigue (brain fog), chronic forgetfulness, ibs, restless leg syndrome, muscle pain (especially after exertion), muscle spasms, parasthesia (left side only), intermittent dizziness, infrequent bouts of rapid heart rate
Number of years since you developed symptoms of fibromyalgia: early mild symptoms 35 years severe symptoms 14 years
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 14
Describe the extent of your brain fog: Brain fog makes me unable to understand and follow instructions (even simple ones), particularly if they are written or spoken to me in a noisy environment. I cannot recall information that I know, making it almost impossible to perform work tasks effectively. I am exceedingly forgetful and cannot retain much information. I often feel disoriented and find it hard to make simple decisions like going to check if I have mail. If I am having a conversation in Hebrew (which I speak as a second language), I often cannot recall even the most simple of words. In short, when brain fog strikes, I am quite useless.
Estimate number of doctors you have seen for Fibro related symptoms: 5
Do your doctors tend to focus on all your Fibro symptoms: My general practitioner and rheumatologiest do. However the other specialists - gastroenterologist, endocrinologist and neurologist do not.
Do your doctors treat your symptoms individually or collectively: mostly individually
Describe your experience with doctors: Prior to getting a diagnosis of fibromyalgia, I spent 5 years with CFS going to doctors whose collective response was to treat me as though I was a depressed middle aged woman. I got little to no helpful advice and often left in tears. Going to the doctor became quite traumatic for me. When I was finally referred to a rheumatologist,on my first appointment he greeted me with "where have you been for the past 5 years - I can help you". Since then, I have tried to ensure that any doctor I visit has an interest in fibromyalgia, or at least responds in an informed manner. If not, I find another doctor/specialist.
What remedies or medications have you tried: Meds tried: SSRIs, NSRIs, Lyrica, amytryptoline. Supplements: Vit B, D, magnesium and zinc.
What makes you feel better: Cymbalta worked well for over 2 years, then the effect faded. Currently I take milnacipran, which has a reasonable effect. I am unsure if the supplements help, but take them anyway.
What makes you feel worse: Lyrica
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 wonder if there is a connection between genetic predisposition autoimmune disease and fibromyalgia.
Are we missing any important questions: I think it would be helpful to ask for the effect of tried medications on the 4 major troublesome symptoms eg mental and physical fatigue, muscle and joint pain, sleep quality

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