Fibromyalgia Questionnaire & Results

Latest Update: 02/13/2012 

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37 QUESTIONNAIRE COMPLETED DATA FORMS FOR April 2010

04/30/2010
First Name: Melissa
Age: 18
Male or Female: female
City: Nelson
State/Province: Marlborough
Country: New Zealand
How long have you lived there: 18yrs
Where were you born: Nelson
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: student, and part time at a convenience store
How has Fibro affected your ability to work: I have trouble with the physical side of work especially, I've hurt myself several times by straining my muscles. Sometimes I have trouble walking and lifting things.
How has Fibro affected your life: People don't believe me, they think I just want attention. It restrains me from doing the things I want to do in my life.
What were your first symptoms: soreness in hands and ankles - swellings, cramps etc
Your age at onset of symptoms: 16-17
How fast was your rate of decline: few months
What are your current symptoms: Muscle pains 'flare ups', bad headaches, disorientation, extremely painful periods, forgetfulness
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: 2
Describe the extent of your brain fog: not really bad, but if I get stressed I forget lots
Estimate number of doctors you have seen for Fibro related symptoms: 7 + 1 physiotherapist
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 don't believe me.
What remedies or medications have you tried: numerous pain killers and alternative remedies
What makes you feel better: nothing
What makes you feel worse: - being cold
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 don't know what to think, I've been told so many things - which do I believe? I flared up really bad on Monday, couldn't walk for days and mum freaked out again - she wants me to see another doctor. But whats the point? They're all the same even the alternative medicinal ones.
Are we missing any important questions: no

 

04/30/2010
First Name: sandy
Age: 44
Male or Female: female
City: rittman
State/Province: ohio
Country: us
How long have you lived there: 39
Where were you born: 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: bank teller
How has Fibro affected your ability to work: it has slowed me down tremendously
How has Fibro affected your life: it is diabling me
What were your first symptoms: awaken at night with my legs in pain
Your age at onset of symptoms: 44
How fast was your rate of decline: 2 months
What are your current symptoms: almost unable to walk. stiffness and pain from my knees down to my feet
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: 7
Describe the extent of your brain fog: somtimes i just start out my day that way and i will remain that way for that day
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: they say i also have rumetoid arthritis
Describe your experience with doctors: noone has helped me so far with the pain and stiffness
What remedies or medications have you tried: imune suppressors and anti inflamorty
What makes you feel better: nothing but rest
What makes you feel worse: i cant seem to pin point anything in paticular
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 was fine one day and brought to my knees the next. the doctors can not convince me that this is normal
Are we missing any important questions:

 

04/30/2010
First Name: m.
Age: 56
Male or Female: female
City: palmetto
State/Province: florida
Country: usa
How long have you lived there: 50 years
Where were you born: danvilla ill
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: food & baking
How has Fibro affected your ability to work: cant do anthing any more
How has Fibro affected your life: sick all the time
What were your first symptoms: sick could not keep anything down not even water
Your age at onset of symptoms: 25
How fast was your rate of decline: right a way
What are your current symptoms: sick cant sleep wail see good hurt all over all the time hot and cold all the time
Number of years since you developed symptoms of fibromyalgia: 40 years
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 40 years
Describe the extent of your brain fog: cant think right at all
Estimate number of doctors you have seen for Fibro related symptoms: 3
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: i feel a lot better when i leave the office then when i went in
What remedies or medications have you tried: licaric
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:

 

04/30/2010
First Name: Barbara
Age: 32
Male or Female: f
City: Lancaster
State/Province: Pa
Country: US
How long have you lived there: 16 yrs
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: School Aide
How has Fibro affected your ability to work: yes
How has Fibro affected your life: Very much so
What were your first symptoms: Neck pain/ anxiety
Your age at onset of symptoms: 24
How fast was your rate of decline: 5 yrs
What are your current symptoms: fatigue, constipation, trouble concentrating, bladder pain, neck back hip and hand pain, headaches, weight gain
Number of years since you developed symptoms of fibromyalgia: 8
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 1
Describe the extent of your brain fog: I have to refocus myself often throught the day and some days, I just don't try to think. Sceduling better routines help
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,I guess. They send me for a lot of tests
Describe your experience with doctors: Frustrating. They label everything as depression or anxiety and I am very much aware of my mental/emotional state to know when I am depressed and I'm not.
What remedies or medications have you tried: herbals, anti depressants, yoga, massages
What makes you feel better: excersize, healthy diet, meditation, st johns wort,activia, no heals... only sneakers
What makes you feel worse: not enough sleep, too much sun shine, stress, cant work long hours
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: Take Levoxyl 150. Helps
Your theories or comments:
Are we missing any important questions: Genetic predispositions?

 

04/29/2010
First Name: Charlie
Age: 29
Male or Female: Female
City: Los Angeles
State/Province: CA
Country: USA
How long have you lived there: 29 yrs
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: Total Disability!
How has Fibro affected your ability to work: I can not work
How has Fibro affected your life: I am unable to do any of the things others do on a daily basis ie. comb my hair bath etc
What were your first symptoms: Pain and fatigue
Your age at onset of symptoms: 21
How fast was your rate of decline: Very Fast!
What are your current symptoms: Pain everywhere fatigue restless joints
Number of years since you developed symptoms of fibromyalgia: 8
Do your symptoms include brain fog: Yes
Number of years since you developed the brain fog: 5
Describe the extent of your brain fog: Easily distracted have to go over things a number of times cant start things
Estimate number of doctors you have seen for Fibro related symptoms: 4
Do your doctors tend to focus on all your Fibro symptoms: Only one has focused on anything!
Do your doctors treat your symptoms individually or collectively: Individually
Describe your experience with doctors: All but one made me feel like nothing was wrong with me and I was making it up
What remedies or medications have you tried: Lyrica yoga silica(spelling maybe incorrect)
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:
Have you made dietary changes to avoid any other neutrotoxins: No I wasnt aware my diet could change anyhting
Have you tried any thyroid specific treatments: No
Your theories or comments: I am young and incapable of taking care of myself. I feel worthless at times and am made to feel like nothing is wrong with me and its all in my head. This has not only disabled me physically but has made me mentally unstable as well.
Are we missing any important questions: i feel like there are but I cant think of any at this time

 

04/28/2010
First Name: ALISA
Age: 43
Male or Female: FEMALE
City: ROSSVILLE
State/Province: GEORGIA
Country: UNITED STATES
How long have you lived there: 34 YRS
Where were you born: ALABAMA
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 GOING TO SCHOOL NOW
How has Fibro affected your ability to work: IT AFFECTED ME GREATLY. I HURT CONSTANTLY. I HAD HEADACHES CONSTANTLY. I COULDN'T SIT OR STAND FOR LONG PERIODS OF TIME.
How has Fibro affected your life: IT MAKES ME MISERABLE
What were your first symptoms: DEEP PAIN IN BONES AND MUSCLES.ESPECIALLY IN MORNING. SKIN FELT LIKE IT WAS ON FIRE. REDNESS AND SWELLING. A LOT OF SWELLING. SLEEP ISSUES
Your age at onset of symptoms: 30
How fast was your rate of decline: YEARLY
What are your current symptoms: EXTREME SWELLING, DEEP PAIN, CAN'T SIT OR STAND FOR LONG PERIODS. HEADACHES,MEMORY ISSUES. CAN'T SLEEP,SKIN FEELS LIKE IT'S BURNING,HAVE GAINED A LOT OF WEIGHT, TIRED ALL THE TIME.ANXIETY, HEART POUNDS.
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: 13 OR MORE
Describe the extent of your brain fog: CONSTANTLY FORGETTING THINGS. FORGET WHERE I AM GOING. DRIVING ONE PLACE AND END UP SOMEWHERE ELSE.LOSING THINGS LIKE KEYS ALL THE TIME. CAN'T REMEMBER DATES. TRYING TO GO TO SCHOOL, NOT WORKING OUT VERY WELL, HAVING HARD TIME FOCUSING OR REMEMBERING THINGS.
Estimate number of doctors you have seen for Fibro related symptoms: 6
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 OF THEM ACT LIKE THERE IS NOTHING WRONG. OR JUST GIVE TEMPORARY FIXES.
What remedies or medications have you tried: LYRICA,MOBIC,SKELAXIN,SOMA,PERCOSET,CYMBALTA,THERAPY, AQUA THERAPY,AMBIEN,LUNESTA,DARVOCET,
What makes you feel better: NONE OF THEM. THEY DON'T LAST. THE AQUA THERAPY HELPED, BUT WHEN I GOT IN THE CAR & DROVE, EVERYTHING WENT BACK TO SAME WAY.
What makes you feel worse: A LOT OF WALKING, LIKE SHOPPING, WASHING DISHES, SWEEPING, MOPPING,WORKING IN YARD, LOTS OF BENDING OVER. WEATHER, COLD OR HUMID
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: TAKE LEVOTHYROXINE NOW.
Your theories or comments: WOULD LOVE TO HAVE A HALF WAY NORMAL LIFESTYLE AGAIN. WHERE I CAN FUNCTION WITHOUT HURTING ALL THE TIME!
Are we missing any important questions:

 

04/27/2010
First Name: Carl
Age: 53
Male or Female: Male
City: W. Chester
State/Province: Ohio
Country: USA
How long have you lived there: 20 yrs
Where were you born: Iowa
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: teaching
How has Fibro affected your ability to work: Causes brain fog, lack of energy, lack of focus. Morning pain is very bad.
How has Fibro affected your life: Muscle and joint pain is almost constant. Muscles are as tight as steel cables, even with muscle relaxant.
What were your first symptoms: Muscle weakness and pain all over. Lack of energy, serious muscle spasms. Inability to sleep.
Your age at onset of symptoms: 50
How fast was your rate of decline: ?
What are your current symptoms: Serious muscle and joint pain, indigestion, brain fog, inability to sleep. Without cymbalta, pain hypersensitivity in scalp and face.
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: 2
Describe the extent of your brain fog: Short attention span, difficulty focusing on one task or conversation that gets worse with more severe pain.
Estimate number of doctors you have seen for Fibro related symptoms: 3
Do your doctors tend to focus on all your Fibro symptoms: One does.
Do your doctors treat your symptoms individually or collectively: Individually
Describe your experience with doctors: Only GP doctor has been helpful.
What remedies or medications have you tried: melatonin, baclofen, tramadol, cymbalta, Lyrica, flexeril, diclofenac, ambien, ambien CR, etc.
What makes you feel better: Ambien CR, cymbalta, tramadol
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: Yes
Have you tried any thyroid specific treatments: Yes, synthroid
Your theories or comments: Fibro involves the endocrine system, especially the hypotalamus and the pons in the brain due to effects on the thyroid, lack of sleep, brain fog
Are we missing any important questions:

 

04/27/2010
First Name: Colleen
Age: 18
Male or Female: F
City: Lahinch
State/Province: Munster
Country: Ireland
How long have you lived there: 18 years
Where were you born: Same
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: Student
How has Fibro affected your ability to work: yes
How has Fibro affected your life: Pain and Fatigue
What were your first symptoms: Pain in the back of my legs
Your age at onset of symptoms: 17 (3 months ago)
How fast was your rate of decline: quick
What are your current symptoms: Pain in spleen, liver, legs and headaches, also fatigue.
Number of years since you developed symptoms of fibromyalgia: 3 months
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: yes
Do your doctors treat your symptoms individually or collectively: collectively
Describe your experience with doctors: fair to good, they don't seem to be up to speed on any possible treatments.
What remedies or medications have you tried: graded exercise and some some homeopathic remedies.
What makes you feel better: some times the pain lessens but I don't know why.
What makes you feel worse: Eating mekes me feel nausious and unwell.
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: yes I think. Has my appetite been affected? Yes, often I don't feel like eating and often when I do I feel a little sick in my stumock.

 

04/27/2010
First Name: michele
Age: 57
Male or Female: female
City: merchantville
State/Province: new jersey
Country: usa
How long have you lived there: 12 yrs
Where were you born: philadelphia
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: post office clerk
How has Fibro affected your ability to work: greatly
How has Fibro affected your life: even more
What were your first symptoms: weakness in leg muscles..legs going out from under me.
Your age at onset of symptoms: 47
How fast was your rate of decline: slow
What are your current symptoms: consistant buzzing pain all over, severe pain moves around from place to place on the body. sensitivity to smells taste,light,and touch.hugging is painful at times. forgetfullness.severe pain in joints and muscles.low grade pain in stomach...not sure if it is related... numbness in legs and feet and sometimes hands. severe cramping in feet. nooooo good sleep. always tired and weak.
Number of years since you developed symptoms of fibromyalgia: 12..give or take...
Do your symptoms include brain fog: lately, yes
Number of years since you developed the brain fog: 3, maybe
Describe the extent of your brain fog: trouble getting out a thought forgetting names right after someone tells me.
Estimate number of doctors you have seen for Fibro related symptoms: 2
Do your doctors tend to focus on all your Fibro symptoms: 1, yes...other, not at all.
Do your doctors treat your symptoms individually or collectively: collectively
Describe your experience with doctors: i got the feeling they thought it was in my head and menapausal. then, the drug prescripting
What remedies or medications have you tried: lyrica,heat,massage, stretching, weight lifting, walking, running, stop diet sodas, red meat veggie diet, distilled water. given other meds but never took them...tried aspirin, ibupropen, aleve, melatonin, sleeping pills from dr. ,and much much prayer!
What makes you feel better: heat,rest...good sleep,less stress,prayer, stretching and being around family.
What makes you feel worse: stress,sitting/standing too long,sometimes cold,weight lifting, no sleep, truely i have tried to monitor this pain but there seems to be no ryme or reason... the pain is relentless!
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: not exactly sure what they consist of.
Have you tried any thyroid specific treatments: iodine...no notible change
Your theories or comments: i suspect this could be from a drug given during surgery or accutane,(a drug used for acne) or diet foods... and i want to emphasize the diet food thing
Are we missing any important questions: i think that diet sugars should be factored into the questions. if a person likes the work that they do. and if the pain started after any trauma to the body.

 

04/25/2010
First Name: Lucia
Age: 33
Male or Female: Female
City: Holbrook
State/Province: NY
Country: USA
How long have you lived there: 33 years
Where were you born: Upstate NY
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: Cardio Kickboxing instructor
How has Fibro affected your ability to work: YES
How has Fibro affected your life: YES
What were your first symptoms: IBS
Your age at onset of symptoms: 16
How fast was your rate of decline: Moderate
What are your current symptoms: IBS,Chronic fatigue,Chronic pain,Shooting pain in ears,depression,numbness in legs and hands
Number of years since you developed symptoms of fibromyalgia: 17 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: Forgetfullness,absent mindedness,lack of short term memory
Estimate number of doctors you have seen for Fibro related symptoms: 6
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: No curing effects
What remedies or medications have you tried: Cymbalta,Savella,Percot
What makes you feel better: Percot
What makes you feel worse: Cymbalts & Savella
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,Natural Supplements
Your theories or comments: To a point where I have accepted there is no cure
Are we missing any important questions:

 

04/24/2010
First Name: Nadi
Age: 58
Male or Female: Female
City: Amsterdam
State/Province: North Holland
Country: Netherlands
How long have you lived there: 35 years
Where were you born: Ireland
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: Private Cook / Administration
How has Fibro affected your ability to work: Totally
How has Fibro affected your life: My life has become a constant survival of the pain caused by Fibro.
What were your first symptoms: I'm not sure, my doctor suggested about 3 years ago that I could have Fibro, Six months ago I had Ischias pain ... subsequently pain in the coccygodinia, subsequently pain over my whole body. I sleep badly - one out of three nights I get a whole nights sleep ... always wake exhausted.
Your age at onset of symptoms: 57
How fast was your rate of decline: about 6 months
What are your current symptoms: Shooting and burning pains all over.... the place keeps changing. Pain in muscles, facial tissue, joints. What feels as nerve pain just about everywhere. Sharp pains in eye sockets and head. Pain in diafragma especially after eating. Stiffness in back, neck and shoulders ... so bad at night that I wake and have to get out of bed in order to move and stretch my back muscles. Pain in stomach/intestines. Burning sensations on different areas of skin - keeps changing.
Number of years since you developed symptoms of fibromyalgia: At this debilitating level - 6 months
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
Do your doctors treat your symptoms individually or collectively: collectively
Describe your experience with doctors: My house doctor is the only one educated on the symptoms of Fibro. Specialists seem to be ignorant and non communicative.
What remedies or medications have you tried: Up to now the only treatment has been pain killers.
What makes you feel better: rest and heat - hot water bottles etc.
What makes you feel worse: movement, 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 am currently doing a juice fast - about 10 days. (not sure what neurotoxins are)
Have you tried any thyroid specific treatments: no
Your theories or comments: I'm still educating myself ...
Are we missing any important questions:

 

04/23/2010
First Name: Bethany
Age: 23
Male or Female: Female
City: Dalton
State/Province: OH
Country: USA
How long have you lived there: 1 year
Where were you born: Tampa, FL
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: Nanny
How has Fibro affected your ability to work: I can never be sure of when I'm going to feel ok, and when I'm going to be so bad that I can barely move! I never feel good, so it's not a question of that, just if I'll be able to clean my house and do a little laundry, or not :(
How has Fibro affected your life: I'm a complete grump so much of the time. OTC pain meds do almost nothing for the pain, so I don't even bother anymore. I don't go very many places anymore, and when I do, I always make sure i can leave at any time.
What were your first symptoms: aching arms and legs when i was tired.
Your age at onset of symptoms: 19
How fast was your rate of decline: moderately fast
What are your current symptoms: moderate to severe pain 24/7. There is never a moment that I am not in pain. Also the brain fog and mental unclarity is at times overwhelming.
Number of years since you developed symptoms of fibromyalgia: 5
Do your symptoms include brain fog: OH YES!!
Number of years since you developed the brain fog: 3
Describe the extent of your brain fog: I now have trouble writing, especially when someone is dictating a number of message to me. I simply cannot think of what to write, and when i do write, it's all messed up and turned around. I often forget things I need to do or take with me, and have a lot of trouble remembering. This is very hard on me, as I am used to being extremely sharp and on top of everything!
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: individually
Describe your experience with doctors: They don't believe me. They say I need muscle relaxers, or whatever
What remedies or medications have you tried: stretching, chiropractic, massage therapy, and rationing my narcotic painkillers I get for other things
What makes you feel better: massage therapy probably helps the most. Hot showers will at least make me feel a little better temporarily, and medicines Darvocet and stronger.
What makes you feel worse: NOT SLEEPING! sitting or standing for a long time. Stress
Have you tried avoiding fluoride in your diet: yes
If so, which sources of fluoride: i use absolutely NO fluoride toothpaste, and drink only RO or distilled water
Have you made dietary changes to avoid any other neutrotoxins: yes
Have you tried any thyroid specific treatments: yes. I've tried iodine and other thyroid herbal blends - NOTHING helps, and since my bloodwork is all always "within normal ranges", I got no help there either. It is a frustrating battle I've been fighting for 5 years!!
Your theories or comments:
Are we missing any important questions: It would be nice if you had a database of doctors that will actually recognize fibro and help their patients, rather than treating them like psychos!!

 

04/22/2010
First Name: Rebecca
Age: 54
Male or Female: female
City: Decatur
State/Province: aL
Country: usa
How long have you lived there: 54
Where were you born: florence al
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: hairdresser
How has Fibro affected your ability to work: yes
How has Fibro affected your life: ability to stand and use arms efficiently
What were your first symptoms: tired achy muscules
Your age at onset of symptoms: 43
How fast was your rate of decline: very fast
What are your current symptoms: tiredness achy muscles
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: last eight really worse
Describe the extent of your brain fog: interferes with job ability
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: doesnt treat at all
Describe your experience with doctors: doesnt recognize fibro
What remedies or medications have you tried: lyrica flexaril
What makes you feel better: hot tub of water
What makes you feel worse: long days on my feet
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:
Are we missing any important questions:

 

04/21/2010
First Name: Margaret
Age: 53
Male or Female: female
City: Swan
State/Province: Iowa
Country: USA
How long have you lived there: ten years
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:
How has Fibro affected your ability to work: Yes
How has Fibro affected your life: No sleep, intense pain all over, Intestinal issues, anxiety heightened, depression, hearing, sun light and smell heightened. Nerves on edge, feel sickly, infected or poisoned.
What were your first symptoms: injury with long standing pain for about 20 months, sleep disturbances, pain in hip and legs with muscle twitching after abrutly stopping zolipidem after 2 months of taking it. went to ER
Your age at onset of symptoms: 50 ish
How fast was your rate of decline: after two intense infections never felt well since.
What are your current symptoms: insomnia, chronic pain, irritable, depression anxiety, no appetite IBS problems hearing, smells and sun sensativity and medication sensativity
Number of years since you developed symptoms of fibromyalgia: about three years
Do your symptoms include brain fog: Yes have no short term memory
Number of years since you developed the brain fog: I have really noticed it in the past year.
Describe the extent of your brain fog: Short term memmory. fuzzy thinking, confusion. slowing down thought process.
Estimate number of doctors you have seen for Fibro related symptoms: 10
Do your doctors tend to focus on all your Fibro symptoms: Now that I just started seeing a rhuematologist I hope I can recieve the proper treatment
Do your doctors treat your symptoms individually or collectively: Do not know yet was just diagnosed April 2, 2010
Describe your experience with doctors: Male specialist treated me like a menopausal crazy woman. Now am trying to see femal physicians to help eliminate stress for me
What remedies or medications have you tried: Heat and ice on pain, lots of soaking in the tub. No drinking not much eating, Try to lower stressful situations. Trazadone but make my mouth really dry, amitriptyline but neither is keeping me asleep, ultacet put does not help with intense pain. Celexa but still feel depressed and not any better yet
What makes you feel better: a massage would be nice. baths, heat, ice on painful areas. Sleep would be nice but have not slept for three years really
What makes you feel worse: Sunlight, noise, smells, stress because my anxiety is out of control.
Have you tried avoiding fluoride in your diet: No but am thinking maybe I should
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: Want to become a vegatarian, but right now I am in sort of a flare and have no energy.
Have you tried any thyroid specific treatments: Yes my thyroid was 8.9 and now is .055. levoothyroxine 75mcg. Hot flashes have improved since on the medication
Your theories or comments: Feels like I have been poisoned or an infection I can not get rid of. immune problem. Nerves are sensative to everything.
Are we missing any important questions:

 

04/21/2010
First Name: N.
Age: 42
Male or Female: female
City: Cambridge
State/Province: Cambridgeshire
Country: United Kingdom
How long have you lived there: 14
Where were you born: Iran
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: Academic doctor
How has Fibro affected your ability to work: Yes, tired all the time and cannot concentrate
How has Fibro affected your life: Yes, too tired and in pain to look after myself, depressed (chicken or egg?) worried about ability to carry on working
What were your first symptoms: stiffness and pain
Your age at onset of symptoms: 38
How fast was your rate of decline: persistent pain last couple of years
What are your current symptoms: stiffness esp in ams - suffer from lupus, but feel much of it is fibromyalgia
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: 4
Describe the extent of your brain fog: I can't concentrate at work often, it is very variable -sometimes fine, sometimes can't think at all or 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: most just ignore it or offer amitryptline
What remedies or medications have you tried: bowen therapy, qigong,
What makes you feel better: the above
What makes you feel worse: 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: tried reduced meat
Have you tried any thyroid specific treatments: no
Your theories or comments:
Are we missing any important questions:

 

04/20/2010
First Name: Sandie
Age: 65
Male or Female: Female
City: Ellensburg
State/Province: Wa
Country: U.S.
How long have you lived there: 50 years
Where were you born: Twin Falls, Idaho
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: Retail business owner for 21 years
How has Fibro affected your ability to work: I could not work at this time
How has Fibro affected your life: Hard to do so many thing I used to do. Hard to maintain relationships.
What were your first symptoms: Muscle pain & tingling in feet and legs. Difficulty sleeping.
Your age at onset of symptoms: 58
How fast was your rate of decline: Pretty constant
What are your current symptoms: Muscle and joint pain, tingling and numbness, coordination problems, insomnia, fatigue, cold hands and feet, mental fog. Anxiety. IBS
Number of years since you developed symptoms of fibromyalgia: 7 years
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 7 years
Describe the extent of your brain fog: Forget things, confusion, overwhelmed.
Estimate number of doctors you have seen for Fibro related symptoms: 5
Do your doctors tend to focus on all your Fibro symptoms: Only one of them believes in Fibro- myalgia.
Do your doctors treat your symptoms individually or collectively: They have only treated the Anxiety part of the illness.
Describe your experience with doctors: I had a wonderful Primary who would at least listen to me but don't think he truly believed in Fibro.
What remedies or medications have you tried: SSRI drugs, Xanax.
What makes you feel better: The Xanax at least relaxes me.
What makes you feel worse: SSRI drugs made me feel horrible.
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 try not to eat wheat products
Have you tried any thyroid specific treatments: I am on 75 mg of Synthroid every day.
Your theories or comments: I sometimes feel that the Fibro is somehow related to my Thyroid im- balance.
Are we missing any important questions:

 

04/19/2010
First Name: Tracey
Age: 41
Male or Female: f
City: Duncansville
State/Province: pa
Country: us
How long have you lived there: 41 years
Where were you born: altoona
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: childcare
How has Fibro affected your ability to work: none
How has Fibro affected your life: moody, in pain ,
What were your first symptoms: muscle aches
Your age at onset of symptoms: 38
How fast was your rate of decline:
What are your current symptoms: headaches,muscle aches, tired, no energy, extreme fatigue, depressed, moody, cant loose any wught
Number of years since you developed symptoms of fibromyalgia: 4
Do your symptoms include brain fog: yes bad
Number of years since you developed the brain fog: 4
Describe the extent of your brain fog: cant remember, eye sight getting worse
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: say im just depressed
Describe your experience with doctors: frustrating
What remedies or medications have you tried: cymbalta
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:
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:

 

04/18/2010
First Name: Georgia
Age: 33
Male or Female: F
City: Hahira
State/Province: GA
Country: USA
How long have you lived there: 33
Where were you born: Tifton, GA
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: I miss more than my alotted days due to pain and fatigue of fibro. I am not as interactive with my students. I do not seem as happy and have progressively earned a "mean teacher" reputation. Conflicts with students arise sometimes based on their perceptions of my demeanor. Chronic pain has taken my initiative away. I do not volunteer for ANYTHING. I do what I must and leave as early as possible.
How has Fibro affected your life: I can never get things accomplished. Truly, the want to is still there. I just have no motivation to follow my dreams. I have been 3 classes away from my master's for 2 years. After an intense attack, I haven't been able to muster up the courage to try again. My children are not tended to the way I want to. They are older and can do for themselves, byt I want to be the mom that plays tennis with them. I just can't do it. My husband is wonderful, but even he gets tired of seeing me on the couch. He is patient but there is a strain there.
What were your first symptoms: fatigue, headaches, clumsiness, no stamina
Your age at onset of symptoms: 28
How fast was your rate of decline: about 10% each year
What are your current symptoms: fatigue, chronic pain, IBS, headaches, heart palpitations, foot/leg pain, lower immune system, sleepiness, brain fog, no motivation
Number of years since you developed symptoms of fibromyalgia: 5
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 3
Describe the extent of your brain fog: forget where things are, get lost driving familiar routes (like home), forget words, don't understand jokes anymore, watching tv and following a plot is difficult along with reading a book
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: individually
Describe your experience with doctors: i have been disatisfied with my doctors because progress is temporary and limited. the symptoms return or morph into a different monster
What remedies or medications have you tried: all the pain killers and muscle relaxers; antidepressants, herbs, mega doses of vitamins, water, apple cider vinegar
What makes you feel better: sleep, water compression ( I scuba/cave dive when I can. If I can get below 60 ft, I have no pain)
What makes you feel worse: standing for log periods, too much noise, bright lights, cold weather,shallow breathing, interrupted sleep
Have you tried avoiding fluoride in your diet: yes!
If so, which sources of fluoride: prescriptions, tap water, processed foods/drinks, toothpaste
Have you made dietary changes to avoid any other neutrotoxins: no
Have you tried any thyroid specific treatments: no
Your theories or comments: I have wondered because my husband has had many of the same symptoms and was diagnosed with mono if the epstein barr virus cause mono and is linked to chronic fatigue which is linked by some or called the same as fibro... could it be just a virus?
Are we missing any important questions: Why is swimming preferred by so many with fibro? Could increased pressure help? When I dive, I have to urinate A LOT! I think the pressure on my whole body stimulates kidneys.

 

04/18/2010
First Name: O.
Age: 54
Male or Female: male
City: Odessa
State/Province: Texas
Country: USA
How long have you lived there: 20 years
Where were you born: Yokuska, Japan
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: Nursing
How has Fibro affected your ability to work: I can no longer work because of the constant pain and muscle spasms all over my body. My toes curl under most of the time, triggering charlie horse spasms in my feet and legs.
How has Fibro affected your life: It has made it difficult to do the normal everyday things that I used to do with ease.
What were your first symptoms: Tingling, numbness and pain in hands and feet
Your age at onset of symptoms: 44
How fast was your rate of decline: fast
What are your current symptoms: dizziness, vision problems, tingling and numbness in hands and feet, constant severe muscle spasms in my sides and ribs, back, shoulders, arms and legs, Sometimes when they are in my sides or ribs, I can't breathe until it lets up. IBS and chronic fatigue. I have trouble resting. I sleep, but I don't ever feel rested.
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: 7
Describe the extent of your brain fog: At times I forget what I am doing or what I am supposed to be doing. I forget that I am cooking something and let it burn. I forget where I put things.
Estimate number of doctors you have seen for Fibro related symptoms: 3
Do your doctors tend to focus on all your Fibro symptoms: They don't even understand it. One of them even doubts that this condition even exists.
Do your doctors treat your symptoms individually or collectively: individually
Describe your experience with doctors: Exasperating. They tell me that I have fibromyalgia because they can't find anything else. It is a "catch-all" they use which really means "We don't know what is wrong with you".
What remedies or medications have you tried: Lyrica - Caused swelling in my legs and made me feel awful, so I quit using it.
What makes you feel better: I take Bentyl for the IBS and Dramamine also. Both help relieve the cramping. Also taking a hot soaking bath with epsom salt helps.
What makes you feel worse: extreme hot or cold environment.
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: No theories. I am tired of living in constant pain. Aspirin seems to help more than other OTC pain relievers.
Are we missing any important questions: I don't know.

 

04/15/2010
First Name: Elizabeth
Age: 30
Male or Female: female
City: spring valley
State/Province: ca
Country: usa
How long have you lived there: 9 yrs
Where were you born: owensboro, kentucky
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: navy instructor
How has Fibro affected your ability to work: Yes. I am currently being evaluated for possible medical discharge or retirement based on my fibro symptoms.
How has Fibro affected your life: I have extreme fatigue and unmanageable pain. I do not go out with my friends as much. I find it very difficult to focus.
What were your first symptoms: unexplained pain
Your age at onset of symptoms: 20
How fast was your rate of decline: slow at first, but in the last year it has declined very quickly
What are your current symptoms: pain, fatique, insomnia, brain fog, depression, anxiety attacks, tension headaches, TMJ pain
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: 2
Describe the extent of your brain fog: I have extreme difficulty concentrating. I must try to think about only one task at a time. I have difficulty conveying information. I often lose my train of thought mid-sentence and cannot think of the appropriate words to get my point across.
Estimate number of doctors you have seen for Fibro related symptoms: 5
Do your doctors tend to focus on all your Fibro symptoms: No. Most say they have to focus on one symptom per visit.
Do your doctors treat your symptoms individually or collectively: Individually
Describe your experience with doctors: It took a long time to diagnose me because doctors would only focus on one symptom at a time, some doctors don't "believe" in fibro, many doctors don't know about fibro, and still some say it's all in my head.
What remedies or medications have you tried: multiple anti-inflammatories, muscle relaxers, acupuncture, physical therapy, massage, cymbalta, lyrica, exercise, stretching
What makes you feel better: massage, light aerobic exercise, yoga, stretching, heat therapy
What makes you feel worse: lack of sleep, stress, standing too long, strenuous exercise, cold, changes in barometric pressure
Have you tried avoiding fluoride in your diet: mo
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: yes, just started following "Eat Right 4 Your Type"
Have you tried any thyroid specific treatments: no
Your theories or comments:
Are we missing any important questions:

 

04/14/2010
First Name: christine
Age: 41
Male or Female: female
City: Quinebaug
State/Province: ct
Country: u.s.
How long have you lived there: all my life
Where were you born: mass.
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: hairdresser
How has Fibro affected your ability to work: tight muscles and muscle spasms in back.
How has Fibro affected your life: I don't sleep well and sometimes I don't want to do much of anything.
What were your first symptoms: soreness/acheness around my joints.
Your age at onset of symptoms: 39
How fast was your rate of decline: after diagonisis, fast
What are your current symptoms: pain, not sleeping
Number of years since you developed symptoms of fibromyalgia: i think I had it since I was a teenager
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: not sure but years
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: some
Do your doctors treat your symptoms individually or collectively: collectively
Describe your experience with doctors:
What remedies or medications have you tried: amitriptolyine
What makes you feel better: amitriptolyine
What makes you feel worse: alcohol
Have you tried avoiding fluoride in your diet: yes
If so, which sources of fluoride: water
Have you made dietary changes to avoid any other neutrotoxins:
Have you tried any thyroid specific treatments: no
Your theories or comments:
Are we missing any important questions:

 

04/14/2010
First Name: Filipa
Age: 42
Male or Female: female
City: Lisbon
State/Province: Lisbon
Country: Portugal
How long have you lived there: always
Where were you born: Lisbon
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: artist /painter
How has Fibro affected your ability to work: no energy, unable to concentrate
How has Fibro affected your life: unable to work, no energy after 3/4 pm. Some signs of depression now
What were your first symptoms: dizziness, poor balance, nunbness in yoes and fingers, groing tiredness
Your age at onset of symptoms: 40
How fast was your rate of decline:
What are your current symptoms: fatuigue, low back pain (right flanK) leg pain (both)
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: 1
Describe the extent of your brain fog: mild
Estimate number of doctors you have seen for Fibro related symptoms: 6
Do your doctors tend to focus on all your Fibro symptoms: no, just the pain
Do your doctors treat your symptoms individually or collectively: individually
Describe your experience with doctors: not easy. I' ve been diagnosed with lupus (LSE) and anti-phospholipid syndrome. But no one ever was able to fit all the signs under a condition. I'm still not very conviced with the current diagnosys
What remedies or medications have you tried: none
What makes you feel better: cortizone made feel better. i'm lowering the dose so I can stop it in 2 weeks
What makes you feel worse: stress, poor 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: No
Have you tried any thyroid specific treatments: No
Your theories or comments:
Are we missing any important questions:

 

04/13/2010
First Name: Kaur
Age: 53
Male or Female: MALE
City: KOTKAPURA
State/Province: punjab
Country: India
How long have you lived there: 24 ys
Where were you born: in a village
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
How has Fibro affected your ability to work: ENOUGH
How has Fibro affected your life: PLENTY
What were your first symptoms: tiredness, muscel pain,weakness, unrefreshing sleep, weight loss
Your age at onset of symptoms: 20 ys
How fast was your rate of decline: not much
What are your current symptoms: tiredness, muscel pain,weakness, unrefreshing sleep, weight gain, brain fog after ,noon, unknown axeinty,very much body pain after sleep even after day time sleep. over sensetive to voice, low temp.,very weak short term memory, lack of decision making power,etc. my free T3 is 243
Number of years since you developed symptoms of fibromyalgia: 32
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: not clear perhaps 32
Describe the extent of your brain fog: in the afternoon very much, til sleep in the morning no problem
Estimate number of doctors you have seen for Fibro related symptoms: 2
Do your doctors tend to focus on all your Fibro symptoms: No unluckily
Do your doctors treat your symptoms individually or collectively: allopathic medicine makes my condition worst so I have not these more than one week
Describe your experience with doctors: I think they were money minded,shirk work
What remedies or medications have you tried: ayurvedik (herbal),bichemics
What makes you feel better: both little some time
What makes you feel worse: perhapes tension
Have you tried avoiding fluoride in your diet: No
If so, which sources of fluoride: perhaps water or tea
Have you made dietary changes to avoid any other neutrotoxins: hes
Have you tried any thyroid specific treatments: No
Your theories or comments: no please
Are we missing any important questions: perhaps no

 

04/13/2010
First Name: Jennifer
Age: 31
Male or Female: Female
City: Westminster
State/Province: CO
Country: USA
How long have you lived there: 6 years
Where were you born: Sidney, Nebraska
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: scheduler-service level management administration.
How has Fibro affected your ability to work: stepped down as lead. had 2 LOA's. Have Intermittent FMLA. Went down to 4 days a week instead of 5. All within the last year
How has Fibro affected your life: devastatingly
What were your first symptoms: widespread pain - at times unable to walk.
Your age at onset of symptoms: 15
How fast was your rate of decline: slow for first 15 years. very progressive this last 1 year.
What are your current symptoms: fibrofog widespread paid loss of vision in right eye off balance migraines loss of intelligence
Number of years since you developed symptoms of fibromyalgia: 16 years
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 2
Describe the extent of your brain fog: unable to concentrate, forget names of items, forget plans, forget words, mis-spelling, slower reading. short term memory loss. daily.
Estimate number of doctors you have seen for Fibro related symptoms: 15 - give or take a few
Do your doctors tend to focus on all your Fibro symptoms: no
Do your doctors treat your symptoms individually or collectively: individually, but not all. i get the feeling that the DR.s don't care for me and I have been suffering for more than 1/2 my life.
Describe your experience with doctors: not well at all. told to excercise and lose weight. As if I can even make it to the grocery store to buy food for my family.
What remedies or medications have you tried: i have never been given medication for my fibromyalgia, only for depression, insomnia, anxiety, low back pain, high blood pressure, mood stabilization, chronic skin infections, migraine medicine. I take a lot of meds, but have been given nothing for "fibromyalgia" ever.
What makes you feel better: sleep, rest, heating pad, pain meds.
What makes you feel worse: change in weather, increase in stress, "over doing it",
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: cut out fast food and alcohol.
Have you tried any thyroid specific treatments: no
Your theories or comments: i just want help. I need a dr. that genuinely cares for me. I am tired of suffering. Everyday is a battle. Most days I feel like I will not make it much longer. I feel like I am dying faster than everyone else around me. I want help. I'm willing to try anything. I am desperate. One day without paid would be a blessing. I don't remember what it feels like to be "normal". I will not be able to work until I am 65 if I continue to have no treatment.
Are we missing any important questions: no, but I have a question. When I was in elementary school our entire classroom was given "flouride treatments" often. Is this normal or a possible cause of my suffering?

 

04/12/2010
First Name: Amanda
Age: 27
Male or Female: Female
City: Saint John
State/Province: New brunswick
Country: Canada
How long have you lived there: 27 years
Where were you born: Moncton New brunswick
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 use to own my own busines but had to close down beacuse of this.
How has Fibro affected your ability to work: I can not get out of bed somedays, I would be unreliable there is no way to know if i could get up from one day to the next.
How has Fibro affected your life: I dont enjoy life anymore,I use to love going dancing, which i can not do anymore I have a hard time even taking care of my children some days, everything i do , i have to push myself to do it. Couldnt hold the dishes anymore because of my hands cramping so my husband bought me a dishwasher. laundry, walking my dog all painful tasks now. There is no joy in my life anymore and i feel i am much to young to be feeling so old.
What were your first symptoms: When i was a child, the severe leg pains, headaches. as i got older my hips started getting bad and was told it was syatic nerve spent many months in physio therapy but with no releave. After a few years of dealing with back pain and hip pain i woke up one morning with severe muscle and joint pain and have been in pain 24/7 since that day 1 year ago.
Your age at onset of symptoms: 5 or 6 years old, but sever syptoms started at 26
How fast was your rate of decline: it was very fast, i was fine one day i woke up the next in severe pain and have been the same since that day.
What are your current symptoms: My current symptoms are severe muscle and joint pain, headaches chronic fatigue, brain fog, sleep reversal, i sleep all day and i am awake all night.
Number of years since you developed symptoms of fibromyalgia: 1 year
Do your symptoms include brain fog: Yes
Number of years since you developed the brain fog: 1
Describe the extent of your brain fog: I am often very groggy, I cant remember things, i lose thoughts suddenly.
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: for the most part yes, but depending on the doctor.
Do your doctors treat your symptoms individually or collectively: collectively
Describe your experience with doctors: my experience with the doctors has not be very good i have seen many doctors, was hospitalized for 8 days, i was told that i was just depressed and that it was in my head. my family doctor has been amazing trying to find a reason and a cure, but as far as specialists they have had no advice that was helpful.
What remedies or medications have you tried: i have been put on so many medications i probably couldn't list them all, first i was put on prednisone, lyrica, amnitriptyline, celebrex, neourontin, endocet, dilaudid, oxy-cotton and now i have been on 60 mg of morphine a day for 6 months. with no relief at all.
What makes you feel better: Not much really makes me feel better, water, being in water makes me feel great. I have tried walking, light exercise, physio, acupuncture and none have helped at all.
What makes you feel worse: standing for more then 10 minutes, walking for more then 20 minutes sitting to long.. housework,drinking alcohol makes my symptoms much much worse. to much sleep. not enough 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: Nothing yet, not sure where to go with that at this point.
Have you tried any thyroid specific treatments: no i have not tried any treatment for thyroid.
Your theories or comments: I at this point have no theories, I am new to the fibromyalgia world and the only thing i have got from this is Depressed and lost my life.
Are we missing any important questions:

 

04/11/2010
First Name: Rebecca
Age: 38
Male or Female: female
City: lakeside
State/Province: az
Country: usa
How long have you lived there: 9 yrs
Where were you born: flagstaff az
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: RN Radiology
How has Fibro affected your ability to work: yes
How has Fibro affected your life: depression, less active with family and friends and limited ability to accomplish goals
What were your first symptoms: Fatigue and Pain joint
Your age at onset of symptoms: 36
How fast was your rate of decline: 12 months
What are your current symptoms: pain, depression, fatigue and painful bladder, insomnia
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: 1
Describe the extent of your brain fog: unable to appropriate words and unable to multitask
Estimate number of doctors you have seen for Fibro related symptoms: 10
Do your doctors tend to focus on all your Fibro symptoms: NO NO NO NO NO NO NO
Do your doctors treat your symptoms individually or collectively: yes, because I beg, even though I am an RN.
Describe your experience with doctors: They are not sure and are fustrated that they don't have the etiology or tx
What remedies or medications have you tried: anti-depressents, pain meds, yoga, meditation, diet, stress reduction, accupunture, mms, supplements and more supplements, beemer, jacuzzi and more
What makes you feel better: sleep and medications (narcotics)
What makes you feel worse: activity
Have you tried avoiding fluoride in your diet: YES
If so, which sources of fluoride: water, toothpaste, meds
Have you made dietary changes to avoid any other neutrotoxins: yes, no msg or aspertame
Have you tried any thyroid specific treatments: not sure just t3 and t4
Your theories or comments: Need more research and eduction during med school for the dr.'s
Are we missing any important questions: environmental,,, elevation, humitity, etc????

 

04/10/2010
First Name: Helen
Age: 49
Male or Female: female
City: Melbourne
State/Province: Victoria
Country: Australia
How long have you lived there: 44 years
Where were you born: Malta
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: retail
How has Fibro affected your ability to work: unable to work
How has Fibro affected your life: I feel isolated and lost confidence and independence
What were your first symptoms: Headaches, dizziness, fatigue,lower back pain
Your age at onset of symptoms: 45
How fast was your rate of decline: symptoms developed quickly
What are your current symptoms: stiff neck, joint pain, muscle pain,body aches, fatigue,numbness, sensitive to lights and cold temperature, forgetfullness
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: two
Describe the extent of your brain fog: Have trouble remembering what I was about to say and difficulty in solving simple tasks
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: At present still trying to find the correct treatment.
Describe your experience with doctors: My GP of 18 years did not believe me or take my symptoms seriously.
What remedies or medications have you tried: Accupuncture, meditation and relaxation. Heat packs.
What makes you feel better: Heat packs, relaxation.
What makes you feel worse: Stress, worry, repetitive work
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: It sounds like a very complex condition, and I may have had symptoms earlier at age 32 that were not diagnosed.
Are we missing any important questions:

 

04/10/2010
First Name: Joanne
Age: 34
Male or Female: Female
City: Dublin
State/Province: Dublin
Country: Ireland
How long have you lived there: all my life
Where were you born: Dublin
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: REceptionist & Operations Administrator
How has Fibro affected your ability to work: I have lost alot of sick days due to the unbearable chronic Fatigue & Pain
How has Fibro affected your life: It has affected my life dramatically because as my symptoms got worse i changed from an upbeat socialable person to a depressed antisocialable person as i couldnt take the pain and tiredness anymore. Doctors werent helping with my situation either as they didnt know what was wrong with me as they tried every test until January this year when i was finally diagnosed with FMS by a rheumatologist.
What were your first symptoms: Tiredness while i was in my late teens early 20's
Your age at onset of symptoms: 19yrs - 20yrs
How fast was your rate of decline: Slow at first but when i had my fall it progressed very fast
What are your current symptoms: I have Chronic Pain, Chronic Fatigue Sydrome & Fibro fog as my major symptoms. I also have had severe dizzyness & nausea the last two years, so recently because ive been diagnosed with FMS the doctors have taken it more seriously & think its Vertigo which can be a symptom of FMS& put me on tablets to help, They also sent me for an ECG recently to to make sure its not anything cardio & im awaiting results! Im also 3 stone over weight and have been trying for 4yrs to lose it, Dieticians couldnt understand why i couldnt lose it as my diet was very good & so as a last resort i was put on xenical for 6mths last year and still didnt lose the weight. I also have tingling in my hands,legs,feet & nose amoungst alot more other minor symptoms
Number of years since you developed symptoms of fibromyalgia: 15yrs
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 3
Describe the extent of your brain fog: At first i only got "Fibro Fog" when my Chronic fatigue became bad and now it has become on going. Im only on my Lyrica medication less than three months so im not sure if thats affecting it as im taking at night for sleep and Pain management. With the Fibro Fog I stop mid way through sentences as i cant remember what i want to say & get frustrated to find words all the time, I also mix up my words alot,sometimes my words can be slurred as if im drunk. I cant concentrate on reading anything & have to read things 3 or 4 times and still i cant take in what im reading. It feels like im in a day dream & that my brain is on a time delay.
Estimate number of doctors you have seen for Fibro related symptoms: about 13 before being Diagnosed
Do your doctors tend to focus on all your Fibro symptoms: Ive only been recently diagnosed & doctor is concentrating on my Chronic Pain & Fatigue
Do your doctors treat your symptoms individually or collectively:
Describe your experience with doctors: I had an awful time with Doctors who wouldnt listen to what i was saying about how i was feeling. I was treated really badly and like an idiot in most cases. I have left alot of clinics in tears & was very frustrated. Ive been through at least 13 different docs that all thought they knew what was wrong with me, some even called me a liar to my face about my diet etc., some asked me was i pregnant, others said they'd be dumbfounded if it wasnt hormonal, one doctor told me your body changes when it hits 30yrs old & to forget about anything being wrong. Ive been through so many tests including painful ones like getting injections done in to my neck and back. I finally ended up in the Rheumotolgy Dept only because i kicked up a fuss after the Endocrinology dept where kicking me out the door with their conclusion that i just needed to eat half of my 1200cals diet & exercise more. anyhow finally I found a massive weight of my shoulders when i was diagnosed
What remedies or medications have you tried: Ive only been recently Diagnosed so im on Lyrica less that 3 months & ive had 5 Sessions of NST Physio
What makes you feel better: I was told that the NST Phsio should start working after 5 sessions and it certainly does, my pain has reduced dramatically but i still have chronic Fatigue
What makes you feel worse: Exercising, lifting or carrying 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: Im trying to eat as much organic as i can and have recently just seen your website and seen the article on Fluoride which i found fascinating and distrubing and the same time. Im going to try and cut out as much Fluoride as i possible can over the next few months. I usually drink 4-5 cups of green tea and i stopped taking it 2 days ago along with changing my toothpaste. Im hopeing to order a water distiller online over the next couple of days
Have you tried any thyroid specific treatments: I had my Thyroid tested 2 yrs ago and the tests came back clear but it was interesting to read information on the website about Hypothyroidism and how it is under Diagnosed
Your theories or comments: I find the Fluoride Theory Fascinating and have passed on the info to my partner, family & Friends already, who were as shocked as myself. I hope to also tell any other Fibromyalgics i meet about Chronic Fluoride poisoning.
Are we missing any important questions: I didnt see anything about NST Physiotherapy on your FMS pages although i might of missed it. I'll check again.

 

04/09/2010
First Name: Mary
Age: 39
Male or Female: female
City: sacramento
State/Province: ca
Country: usa
How long have you lived there: 37 yrs
Where were you born: las vegas
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: I don't know when I'll have a spell of really bad days, so I can't get a job.
How has Fibro affected your life: It makes me upset to know that I have this disease, but I also know that this disease does not have me. It has affected my family life, many times I plan on doing certain housework, but I can't, I have to read things over, the memory problem is probably the worst of it. I can handle the pain, most of the time, but the memory problems, that's just something that I've tried to deal with
What were your first symptoms: Pain, trouble sleeping, night terrors, muscle spasms
Your age at onset of symptoms: 31
How fast was your rate of decline: Pretty fast
What are your current symptoms: Memory problems, muscle spasms, migraines, problems getting good sleep
Number of years since you developed symptoms of fibromyalgia: 8
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 7
Describe the extent of your brain fog: To remember something, I have to write it down, read it over and over, or record it somehow. It is getting worse
Estimate number of doctors you have seen for Fibro related symptoms: Over 50
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: My first doctor was great, found that I had only 2 points of the spots that were not affected. Introduced me to trigger points, he had really studied up on the symptoms and dealt with each one individually. Set me up with CAT scans and MRI's. Explained what foods to avoid and told me things to encourage me. The doctor that replaced him has to be reminded by me for trigger points when I call in for them, changes meds and only asks if they are helping. He really does not know how to treat fibro.
What remedies or medications have you tried: Soma (got hooked), tylenol 3, motrin 800, colonzapan (4 mg @ bedtime), trazadone (300-400 mg @ bedtime), topamax, elavil, and some other RX's, Doan's, valerian root and kava kava mix, acupuncture, acupressure, cupping, exercise-walking,
What makes you feel better: Walking, getting a nap in, trying to stay busy. If my back is out, the only thing that really helps, other than walking can't be done, is Doan's Back Pain
What makes you feel worse: Laying around doing nothing
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, removed citric acid, mostly, started drinking bottled water
Have you tried any thyroid specific treatments: no
Your theories or comments: I believe that this is a pestilence, (man-made disease), mine started about the time I noticed strange con-trails (which now I know to be chem trails). I believe that this is another government conspiracy against its own people. I think that people with Fibro should try do more walking. It's an easy thing to do once you are used to it. It helps keep the pain down. I think that you need to keep your spirit lifted, remember, thinking can be half of your problem OR half of your solution. I know most of us deal with depression, if so, start your own type of "meditation", I prefer prayer. Do someting nice for somebody, call an old friend.
Are we missing any important questions: Describe the worst pain you can remember. (Do not use the pain scale, it doesn't work for us). Do you remember what may have triggered it? Any family members have it? What have you done to help your own situation? Do you trust in your doctor's care, if not, why?

 

04/09/2010
First Name: Katie
Age: 43
Male or Female: female
City: Phoenix
State/Province: AZ
Country: USA
How long have you lived there: 1 month
Where were you born: North Carolina
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: flight attendant
How has Fibro affected your ability to work: made it impossible
How has Fibro affected your life: 100%
What were your first symptoms: woke up from surgery with severe hypersensitivy in left leg from knee up to both hips and through out lower back
Your age at onset of symptoms: 43. date Oct 5th 2010
How fast was your rate of decline: very extreme.
What are your current symptoms: chronic acute pain in leg, hips, back and hypersensity in those areas as well, insomnia,. r.l.s. , i.b.s., severe fatige
Number of years since you developed symptoms of fibromyalgia: Oct 5th 2010
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 3 months
Describe the extent of your brain fog: lose train of thought, confusion
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: have tried all drug treatments, Cymalta, Savella, Lyric, and physical therapy. collectively
Describe your experience with doctors: 1 dr didn't believe me, 2 drs have tried different treatments, done blood work.
What remedies or medications have you tried: hot baths epsions salt, warm pool, Tens unit. physical therapy, cymbalta, savella, lyrica
What makes you feel better: nothing. the savella seems to lessing the hypersensity to a degree
What makes you feel worse: cymbalta. It makes me very sick on my stomach. I lost 10 pounds in 2 weeks.
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: NO?
Your theories or comments: I think the onset was due to the extreme 11 1/2 surgery. I wish some drug company would find a medication that really helps treat this.
Are we missing any important questions: No

 

04/08/2010
First Name: Sarah
Age: 35
Male or Female: Female
City: Middletown
State/Province: MD
Country: USA
How long have you lived there: 3 years
Where were you born: Westminster, MD
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: Orthodontic Assistant
How has Fibro affected your ability to work: Yes
How has Fibro affected your life: Tired and can't do normal everyday activities like I used to. Thankfully I don't have the symptoms every day, they seem to wax and wane. If I do have a day that I feel good and do a lot of stuff, more than likely I will feel it the next day!
What were your first symptoms: Back spasms after the birth of my 5 year old son.
Your age at onset of symptoms: 30
How fast was your rate of decline: Within w year
What are your current symptoms: Neck pain, muscle and joint pain and weakness, tired a lot, headaches, diarrhia
Number of years since you developed symptoms of fibromyalgia: 5, Almost 6
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 1
Describe the extent of your brain fog: Forgetful, short and long term, scramble up the words in my sentences sometimes
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: Uneventful, no medications I have been on really work, stopped takin all but my pain medicine.
What remedies or medications have you tried: Cymbalta, lyrica, prozac, lexapro, vicoden, flexiril, wellbutrin, tramadol
What makes you feel better: Nothing completely, but nice sunny weather seems to help.
What makes you feel worse: Bad weather, being still in any position for 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: No
Have you tried any thyroid specific treatments: No
Your theories or comments: N/A
Are we missing any important questions: No

 

04/08/2010
First Name: Teresa
Age: 55
Male or Female: F
City: Chichester
State/Province: West Sussex
Country: UK
How long have you lived there: 10 years
Where were you born: London
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: self employed dog sitter / behaviourist
How has Fibro affected your ability to work: yes
How has Fibro affected your life: I had to give up be actually employed, also had to get dog walkers in if its a bad day
What were your first symptoms: ulcers, depression, CFS
Your age at onset of symptoms: 20
How fast was your rate of decline: slow, gradual decline over the next 20 years
What are your current symptoms: all the above but to the point of making me housebound at times.increasing food intolerances, chemical intolerances e.g tap water on skin,shampoos, soap
Number of years since you developed symptoms of fibromyalgia: all the symptoms together, 5
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 2
Describe the extent of your brain fog: use the wrong words for things, cannot remember names of people
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: individually
Describe your experience with doctors: waste of time, fobbed off, not taken seriously, tests refused
What remedies or medications have you tried: alternative therapies e.g. relaxation/ hypnotherapy CD's, Reiki,aromatherapy,head massage, herbs,omega3 oil,pain killers, change in sleeping arrangemets
What makes you feel better: less stress, relaxing, meeting other fibro's, good sleep, soft clothes and bedding, memory foam topper,recliner chair, funny films
What makes you feel worse: stress,doing too much,emotional problems
Have you tried avoiding fluoride in your diet: just started since reading the article
If so, which sources of fluoride: tap water, toothpaste, still looking
Have you made dietary changes to avoid any other neutrotoxins: not yet, need more info
Have you tried any thyroid specific treatments: no
Your theories or comments: I would try anything to releive myself of the pain and tiredness, lack of joi de vivre I used to have. I have always thought that it was chemically induced. I feel like a 90 year old trapped in a 55 year old body.
Are we missing any important questions: where did we get any info and help that we already have.

 

04/07/2010
First Name: Cynthia
Age: 62
Male or Female: Female
City: Wasaga Beach
State/Province: Ontario
Country: Canada
How long have you lived there: 1 year
Where were you born: Toronto Ontario 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:
How has Fibro affected your ability to work:
How has Fibro affected your life: I am often unable to do normal household tasks and have trouble exercising I am in pain most of the timeand often feel weak.
What were your first symptoms: Feeling like I had the flu
Your age at onset of symptoms: 52
How fast was your rate of decline: It took 9 years for me to really be flattened by this.
What are your current symptoms: All over pain, dizziness, muscle cramps,fatigue
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: Forgetting what i was doing. Being unable to find the word I am looking for
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: They are sympathetic but i get the impression that they don;t really understand the condition
What remedies or medications have you tried: Tylenol Muscle Aches and Body Pains Hot showers and heating pads and Bromazepam
What makes you feel better: Hot showersheating pad,Bromazepam warm weather,
What makes you feel worse: Low barometer, cold and rainy 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: no
Have you tried any thyroid specific treatments: no
Your theories or comments:
Are we missing any important questions:

 

04/06/2010
First Name: L.
Age: 44
Male or Female: female
City: Hastings
State/Province: East Sussex
Country: England
How long have you lived there: 44yrs
Where were you born: Hastings
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: badley too tired and painful
How has Fibro affected your life: as above
What were your first symptoms: hard to say as have been having them most of my life.
Your age at onset of symptoms: not sure refer to above.
How fast was your rate of decline: n/a
What are your current symptoms: tiredness, joint and muscle pain.
Number of years since you developed symptoms of fibromyalgia: hard to say.
Do your symptoms include brain fog: sometimes.
Number of years since you developed the brain fog: 20's
Describe the extent of your brain fog: forget names of things and some words, also hard to remember appiontments.
Estimate number of doctors you have seen for Fibro related symptoms: 5 or 6.
Do your doctors tend to focus on all your Fibro symptoms: they didn't want to say it was fibromyalgia, they treated it all seperately until I insisted on seeing a rheumatologist.
Do your doctors treat your symptoms individually or collectively: individualy.
Describe your experience with doctors: uninterested, I felt like a hypocondriac.
What remedies or medications have you tried: tramadol. thats all I've been given. They did try an antidepresant but I found it didn't work.
What makes you feel better: Nothing
What makes you feel worse: n/a
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, but am being tested for thyriod at present
Your theories or comments: most drs do not want to recognise fybromialgia, they think it's all in the mind.
Are we missing any important questions:

 

04/05/2010
First Name: Kerrie
Age: 39
Male or Female: F
City: Brighton
State/Province: East Sussex
Country: UK
How long have you lived there: 39 years
Where were you born: Brighton
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
How has Fibro affected your ability to work: Too tired. Pain all over body. Headaches. IBS. Depression. Stress. Poor concentration. Panic attacks. Stiff neck most days.
How has Fibro affected your life: In every way. Never socialise anymore. Find relaxing impossible.
What were your first symptoms: Pains in joints and muscles
Your age at onset of symptoms: 33
How fast was your rate of decline: Fast
What are your current symptoms: Everything listed above plus probably more that I forget about!
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: Always, I think.
Describe the extent of your brain fog: Short term memory not good. Will forget words that I know for no apparent reason. Hard to concentrate
Estimate number of doctors you have seen for Fibro related symptoms: 4
Do your doctors tend to focus on all your Fibro symptoms: Not really
Do your doctors treat your symptoms individually or collectively: Collectively
Describe your experience with doctors: Anti depressants to help me sleep
What remedies or medications have you tried: Nortriptyline, anytriptyline, sleeping tablets, trazodone hydrochloride, mirtazapine
What makes you feel better: None to be honest but some help with sleep
What makes you feel worse: Nortriptyline, anytriptyline
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: Help!
Are we missing any important questions: Dont think so. Cant remember!

 

04/04/2010
First Name: E.
Age: 61
Male or Female: female
City: miami
State/Province: FL
Country: USA
How long have you lived there: 12 YEARS
Where were you born: IOWA
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: EMBROIDERY MFG. OWNER, MGR. WORK FRONT OFFICE WITH CUSTOMERS, PURCAHING, SHIPPING/RECEIVING, RUNNIG MACHINGS
How has Fibro affected your ability to work: SLOWER TO MOVE, PAIN TO GET UP PAIN IN GETTING UP FROM SITTING AND MORE PAIN IN INITIAL WLAKING AND THEN GETS BETTER. TIRE EASILY IN READING THE INTRO, YOU MENTION CONFUSION. WOW - REALLY AM HAVING PROBLEMS WITH THOUGHT PROCESSING, REMEMBERING,
How has Fibro affected your life: CAN NO LONGER DO WHAT I DID 3 YEARS AGO. CAN'T PLAY WITH GRANDKIDS. WALK FOR MORE THAN 10 MINTES W/O PAIN. HAVE BECOME REALLY OUT OF SHAPE AND WEIGHT GAIN.
What were your first symptoms: MUSCLE PAIN AND NO STRAIN TO CAUSE IT. PAIN GROWING IN AREA AND OTHER PARTS OF BODY. MOSTLY KNEES TO LUMBARS. SHOULDER JOINT. PAIN TO THE TOUCH, ( HAVE HAD THIS FOR 20 YEARS, BUT DIDN'T KNOW WHAT THIS COULD BE)
Your age at onset of symptoms: 30
How fast was your rate of decline: SLOW INITIALLY, BUT THE LAST TWO YEARS MORE RAPID INCLREASE WITH PAIN AND INABILITY TO DO THINGS
What are your current symptoms: MUSCLE PAIN, PAIN WHEN JUST TOUCHING SKIN. I HURT ALL THE TIME
Number of years since you developed symptoms of fibromyalgia: 20-30
Do your symptoms include brain fog: YES
Number of years since you developed the brain fog: 18 MO - 24 MO
Describe the extent of your brain fog: CAN'T REMEMBER FAMILY MEMBERS NAMES, PRODUCT INFOR. EVENTS THAT JUST HAPPENED. STRATED CLOSING MY EYES TO 'THINK'.
Estimate number of doctors you have seen for Fibro related symptoms: 0
Do your doctors tend to focus on all your Fibro symptoms: NA
Do your doctors treat your symptoms individually or collectively: NA
Describe your experience with doctors: NA
What remedies or medications have you tried: JUST KEEP GOING EACH DAY. STRETCHING. STARTED DRINKING MORE WATER RECENTLY. WORKING ON GOING ORGANIC, JUICING AND NO BEEF
What makes you feel better: MASSAGE, SOMETIMES HITTING MUSCLES WHEN CAN'T MASAGGE DEEP ENOUGH. HEAT / ICE.
What makes you feel worse: CONTINUED MOVEMENT. WALKING.
Have you tried avoiding fluoride in your diet: NO
If so, which sources of fluoride: TOUTHPASTE
Have you made dietary changes to avoid any other neutrotoxins: STARTED JUICING, ORGANIC AND NO RED MEAT
Have you tried any thyroid specific treatments: NO
Your theories or comments: DO NOT LIKE DRUGS, OR SIDE EFFECTS OF RX. AFRAID OF THEM SO WANT TO LOOK FOR SOMETHING THAT IS W/O MEDICATION. ,
Are we missing any important questions: NONE THAT I CAN THINK OF AT THIS POINT

 

04/03/2010
First Name: Elaine
Age: 45
Male or Female: Female
City: Upper Beeding
State/Province: West Sussex
Country: England
How long have you lived there: 8 years
Where were you born: Ely, Cambridgeshire, England
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 was at university training to be a midwife, but I had to give up
How has Fibro affected your ability to work: I have tried various types of work but it all boils down to the fact that I am too tired to have any free time if I work. No quality of free time.
How has Fibro affected your life: I have to pace myself with everything, I no longer work and if I know I am going out in the evening I have to relax during the day.
What were your first symptoms: Costochondritis that would not heal, as well as very achey for no reason. Also pain when blood pressure was taken.
Your age at onset of symptoms: 42ish
How fast was your rate of decline: Quite fast in the first 2 years but seems to have settled now.
What are your current symptoms: When stressed my chest and right shoulder ache, I am tired all the time, I cannot do any repetitive movement, if I am cold my shoulder and back muscles seize, mild brain fog, lack of concentration, odd sudden pains, ? IBS
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: 2
Describe the extent of your brain fog: Quite mild I think, I cannot remember odd (simple)words here and there, have difficulty concentrating for long periods and my memory is not very good (but then it never has been)
Estimate number of doctors you have seen for Fibro related symptoms: 1
Do your doctors tend to focus on all your Fibro symptoms: Yes
Do your doctors treat your symptoms individually or collectively: Individually, depending on why I am there
Describe your experience with doctors: My doctor was very quick to agree with my self diagnosis, and arranged blodd tests etc and a visit to a rheumatologist, but since being diagnosed I have basically been left to my own devices apart from some counselling early on to help me to come to terms with having a chronic syndrome
What remedies or medications have you tried: Only co-dydromol when I am in pain, alternating with nurofen if the pain is severe.Heat pads, TENS machine, Aqua exercise
What makes you feel better: Heat pads, aqua exercise
What makes you feel worse: Cold, stress, over 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: I try to cook only fresh food so that I am aware of what I and my family are eating
Have you tried any thyroid specific treatments: No
Your theories or comments: I find that if I do not overexert myself and pace myself all the time I can keep it under control. I do not know how affected I am but there seem to be a lot of people out there who are worse off then me. My family are very supportive and I believe this is very important, it was my husband who told me to give up work saying that he would support us.
Are we missing any important questions: I have heard of a lot of cases which began with costochondritits, which is what brought it to my attention, I wonder how many others had this as a starting point. It was the costochondritis website that led me to the fibromyalgia website!

 

 

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