Fibromyalgia Questionnaire & Results

Latest Update: 11/20/2009

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29 QUESTIONNAIRE COMPLETED DATA FORMS FOR August 2009

08/30/2009
First Name: James
Age: 37
Male or Female: Male
City: Bridgend
State/Province: Mid Glamorgan
Country: Wales
How long have you lived there: 14years
Where were you born: Bridgend
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: no
What is Your Line of Work:
How has Fibro affected your ability to work:
How has Fibro affected your life:
What were your first symptoms: Headache, Pain in neck and back.
Your age at onset of symptoms: 18
How fast was your rate of decline: very slowly
What are your current symptoms: Neck and back pain, general joint pain / ibs / headache / dry mouth / sore jaw(TJMD)/ Swollen feet,ankles and leg / confusion (FibroFog) / blurred vision / irritable / short tempered / depression / lack of confidence
Number of years since you developed symptoms of fibromyalgia: 19
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 3 1/2
Describe the extent of your brain fog: cannot concentrate for any length of time (this questionnare has taken 2hrs). Not always coherrent in conversations - loose track of conversation. even simple tasks seem difficult.
Estimate number of doctors you have seen for Fibro related symptoms: 9
Do your doctors tend to focus on all your Fibro symptoms: no
Do your doctors treat your symptoms individually or collectively: individually on specifics eg depression. But overall collectively
Describe your experience with doctors: most seem to just don't want to talk, things always rushed, no one giving answers. most doctorss don't seem to believe there is anything wrong. Current gp has been fantastic! Recent Chronic Pain Management course has been invaluable, pacing and regular exercise helps!! (even on bad days)
What remedies or medications have you tried: accupunture, oseopath, physio, medication, massage, CBT.
What makes you feel better: being busy
What makes you feel worse: relising how little i accompish now.
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: no
Have you tried any thyroid specific treatments: no
Your theories or comments: pacing and regular exercise does help.
Are we missing any important questions:

08/26/2009
First Name: Stacy C
Age: 33
Male or Female: Female
City: Kirksville
State/Province: MO
Country: USA
How long have you lived there: 2.5 years
Where were you born: ID, USA
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 admin
How has Fibro affected your ability to work: I have to live on caffiene and pain pills just to get through the day
How has Fibro affected your life: I feel like I'm missing out
What were your first symptoms: restless legs, headaches, severe cramping during my monthly cycle, dry eyes (fatigue and pain followed shortly there after as well as almost all other symptoms)
Your age at onset of symptoms: 19
How fast was your rate of decline: about 2 years before all symptoms were noticeable
What are your current symptoms: pain, fatigue, dry eyes, severe cramping, restless legs, headaches
Number of years since you developed symptoms of fibromyalgia: 14
Do your symptoms include brain fog: I suppose - I'm very forgetful if that's what you mean
Number of years since you developed the brain fog: really about 14 years ago also
Describe the extent of your brain fog: I am just very forgetful.
Estimate number of doctors you have seen for Fibro related symptoms: 7
Do your doctors tend to focus on all your Fibro symptoms: no
Do your doctors treat your symptoms individually or collectively: collectively (at least that's what they think)
Describe your experience with doctors: When I thought I might be suffering from fibromyalgia I went to a doctor who really didn't believe in fibro. He didn't care what I said I was going through, he just thought it was in my mind.
What remedies or medications have you tried: Lexapro, Myers Coctail, manipulation
What makes you feel better: lots of sleep, plenty of water, plenty of vitamins, Lexapro, and Myers Coctail oh and plenty of caffiene then I almost feel normal
What makes you feel worse: not having any of the above. I feel like I'm going to die w/o because I hurt so much
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: I have made dietary changes, but not for the purpose of avoiding neurotoxins (more just in attempt to feel better)
Have you tried any thyroid specific treatments: I get my thyroid tested every year and it seems to be staying in check
Your theories or comments:
Are we missing any important questions: Last I heard the theory behind what starts fibro is a traumatic event. Is this wrong?

08/26/2009
First Name: Kelly
Age: 43
Male or Female: F
City: Bossier City
State/Province: La.
Country: USA
How long have you lived there: LifeTime
Where were you born: Shreveport La.
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: Sales Assoc. & Janitorial
How has Fibro affected your ability to work: Very hard, can't even work some days.
How has Fibro affected your life: Oh yes
What were your first symptoms: Leg and Hip pain
Your age at onset of symptoms: 40
How fast was your rate of decline: I would say pretty fast
What are your current symptoms: hip,leg,lower back pain. numbness in right arm and hand
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: ?
Describe the extent of your brain fog: Can't hold a conversation,can't think,can't remember things,and can't make decisions
Estimate number of doctors you have seen for Fibro related symptoms: 2
Do your doctors tend to focus on all your Fibro symptoms: yes
Do your doctors treat your symptoms individually or collectively: individually
Describe your experience with doctors: The Dr. I am using now is great he is trying all he can to get to the bottom of my pain. He believes in me
What remedies or medications have you tried: Lyrica,Cymbolta,Sevela,tramadol
What makes you feel better: just awhole lot of pain medication
What makes you feel worse: It just comes on at any time
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
Your theories or comments: Please Help!!!!!
Are we missing any important questions:

08/25/2009
First Name: Cindy
Age: 53
Male or Female: female
City: West Fargo
State/Province: ND
Country: USA
How long have you lived there: 15 years
Where were you born: Minnesota
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: Laborer
How has Fibro affected your ability to work: yes
How has Fibro affected your life: I ache all over, esp. legs, hips and back. I have to work to pay bills but after work I don't want to do anything, and friends and family don't seem to understand. Forthe last 11 years my Dr.'s can't see anything on X-Ray's or blood work so they say "Well you are getting old, you know." , and I have to pay them to have them tell me that.
What were your first symptoms: stiff achy joints and muscles
Your age at onset of symptoms: 40-41 years old
How fast was your rate of decline: Each year is worse
What are your current symptoms: Stiff achy joints, muscle, ligaments, headaches(migranes), forgetfulness, can't sleep, bad moods, loss of energy
Number of years since you developed symptoms of fibromyalgia: 14 years
Do your symptoms include brain fog: if you mean forgetfulness, yes
Number of years since you developed the brain fog: 13 or 14 years
Describe the extent of your brain fog: I forget where I'm going, whether I'm at home or driving someplace, sometimes I forget what I'm saying in mid-sentence
Estimate number of doctors you have seen for Fibro related symptoms: 3 or 4
Do your doctors tend to focus on all your Fibro symptoms: They don't like the word "fibromyalgia", I've been told it's a garbage can term.
Do your doctors treat your symptoms individually or collectively: individually, and they always come back to the age thing.
Describe your experience with doctors: Very frustrating, it's like they don't believe me.
What remedies or medications have you tried: Most anything over-the-counter, no prescriptions because they think I'm just getting old. I did find that acetaminophen helped a little but you can't take that for more than 10 days,it says it can cause liver damage.One Dr. had me in physical therapy for 3-4 months. I've also tried massage and now I'm trying reflexology
What makes you feel better: Heat on affected areas
What makes you feel worse: Activity, it seems the more I do the worse I feel.
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 just wish there was some affordable help out there. We pay for everything we try only to find out there's one more thing that doesn't work.
Are we missing any important questions:

08/25/2009
First Name: Michael
Age: 43
Male or Female: Male
City: Atlanta
State/Province: GA
Country: US
How long have you lived there: 17 years
Where were you born: Pensicola, FL
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: Marketing
How has Fibro affected your ability to work: If in fact this is what I have, the constant pressure on my chest and shoulders sometimes reduces my ability to focus, but for the most part I am able to work.
How has Fibro affected your life: I am not sure I have it, but I do feel constant pressure and muscle pain in my chest and shoulders for more than 2 years now. My chiropractor and the other doctors all told me I had Costochondritis, but now they don't know what to tell me. I sometimes have trouble sleeping and have to be very careful about eating any foods that cause gastritis, because that really intensifies my pain.
What were your first symptoms: Pain in the cartilage between my ribs.
Your age at onset of symptoms: 41
How fast was your rate of decline: It has been a bit of a rollercoaster, with periods of relief followed by deeper dips into pain.
What are your current symptoms: primarily chest and shoulder pain. It seems like my rib heads move in and out of place in front and back. I can self adjust them now, but it is painful.
Number of years since you developed symptoms of fibromyalgia: 2.5
Do your symptoms include brain fog: only every once in a while
Number of years since you developed the brain fog: 1
Describe the extent of your brain fog: I just sometimes have moments where I seem to blank out, but that might also be age related :) I typically come back online fairly quickly.
Estimate number of doctors you have seen for Fibro related symptoms: 4
Do your doctors tend to focus on all your Fibro symptoms: I have never related all the symptoms listed on this page as part of the same issue until now. So, no, they typically just try to treat the most obvious symptoms
Do your doctors treat your symptoms individually or collectively: individually
Describe your experience with doctors: they are as confused as I am about what is happening with me. I am otherwise very fit, do yoga 5 times a week and lead a very active life.
What remedies or medications have you tried: massage and aspirin
What makes you feel better: massage, yoga, deep breathing, meditation
What makes you feel worse: laying down at night to go to sleep and when I get gas.
Have you tried avoiding fluoride in your diet: yes - have for many years
If so, which sources of fluoride: all of the above and toothpaste
Have you made dietary changes to avoid any other neutrotoxins: not sure, which ones?
Have you tried any thyroid specific treatments: yes, just recently started taking a supplement for my Thymus.
Your theories or comments:
Are we missing any important questions:

08/24/2009
First Name: Michelle
Age: 30
Male or Female: Female
City: Chesterfield
State/Province: Derbyshire
Country: United Kingdom
How long have you lived there: 30 Years
Where were you born: Chesterfield
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 Based/Reception
How has Fibro affected your ability to work: A lot,even using a computer keyboard makes my arms ache,and with lack of sleep im usually feeling lethargic.
How has Fibro affected your life: I suffer with Irritable Bowel,bloating,aching arms,neck,headaches,facial pain,back ache,tension and really bad anxiety.
What were your first symptoms: Feeling like I had a virus,not sleeping,aching neck and arms,headache,anxiety.
Your age at onset of symptoms: 24
How fast was your rate of decline: over 6 years
What are your current symptoms: Headaches all over,neck ache,uper back ache,Irritable bowel/constipation,bloating,facial pain,arm and hand pain,bad anxiety.
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: 6
Describe the extent of your brain fog:
Estimate number of doctors you have seen for Fibro related symptoms: 4
Do your doctors tend to focus on all your Fibro symptoms: No,they dont seem that interested.
Do your doctors treat your symptoms individually or collectively: Collectively
Describe your experience with doctors: Not too good
What remedies or medications have you tried: Amatryptaline
What makes you feel better: The above
What makes you feel worse: Sitting in the wrong position,no sleep,alcohol.
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: Dairy
Have you tried any thyroid specific treatments: No
Your theories or comments: I think doctors should spend more time on researching fibromyalgia instead of treating you like your just depressed or anxious.
Are we missing any important questions: No

08/24/2009
First Name: Marilynn
Age: 62
Male or Female: Female
City: E. Weymouth
State/Province: MA
Country: USA
How long have you lived there: 50 years
Where were you born: Jamaica Plain
Is this the first time you have taken our questionnaire: Yes
If not, why are you returning:
Are you still working: Yes
What is Your Line of Work: Administrative Assistant
How has Fibro affected your ability to work: Yes
How has Fibro affected your life: Yes
What were your first symptoms: Severe joint pain that felt like a had the flu with no fever
Your age at onset of symptoms: 23
How fast was your rate of decline: Went many years with pain, but the last couple of years, the pain has increased.
What are your current symptoms: Flu like pain around wrists, neck, shoulders, elbows, legs.
Number of years since you developed symptoms of fibromyalgia: 39 years
Do your symptoms include brain fog: Yes
Number of years since you developed the brain fog: This past year
Describe the extent of your brain fog: Can't remember things that are everyday things. Forget where I put things. Forget if I just did something. Can't remember the word.
Estimate number of doctors you have seen for Fibro related symptoms: 4/5
Do your doctors tend to focus on all your Fibro symptoms: Yes
Do your doctors treat your symptoms individually or collectively: Together
Describe your experience with doctors: Two PC doctors were totally unaware of how to treat. My present PC deals with Fibromyalgia
What remedies or medications have you tried: I have tried mild anti depresents, cymbalta (made me have worse memory problems, balance problems & weight gain). Took Reboxetine as a clinical trial and felt it was my miracle cure, but is not available in US.
What makes you feel better: Reboxetine
What makes you feel worse: Anything else
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 honestly never felt as well as when I was on the Reboxetine. After 32 years of suffering with this disease. Presently, I am having severe pain and trying to work, socialize with family and friends.
Are we missing any important questions:

08/24/2009
First Name: Sandra
Age: 43
Male or Female: Female
City: Tacoma
State/Province: wash
Country: USA
How long have you lived there: 43
Where were you born: West Chicago, IL
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: Accounts Receivable, Collections, Customer Service, Receptionist
How has Fibro affected your ability to work: Fatigue and pain make it hard cuz it lowers my immune system
How has Fibro affected your life: My life is less active cuz of the pain
What were your first symptoms: constant pain and fatique
Your age at onset of symptoms:
How fast was your rate of decline:
What are your current symptoms:
Number of years since you developed symptoms of fibromyalgia:
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 5
Describe the extent of your brain fog: every other day
Estimate number of doctors you have seen for Fibro related symptoms: 3
Do your doctors tend to focus on all your Fibro symptoms: No
Do your doctors treat your symptoms individually or collectively: no
Describe your experience with doctors: they always turn it back to depression.
What remedies or medications have you tried: Effexor and Cimbalta
What makes you feel better: rest and massage
What makes you feel worse: To much activity and stress
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: No
Have you tried any thyroid specific treatments: no
Your theories or comments: I am tired of taking anti-depressants. All they do is cause me to be sick and more tired. Ive been off cimbalta for four weeks and feel mentally good but I'm in pain.
Are we missing any important questions:

08/22/2009
First Name: Pamela
Age: 48
Male or Female: female
City: Smithsburg
State/Province: MD
Country: USA
How long have you lived there: 48
Where were you born: Smithsburg
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: property management
How has Fibro affected your ability to work: yes
How has Fibro affected your life: can only work full-time have trouble with numbers brain fog
What were your first symptoms: fatigue muscle pain
Your age at onset of symptoms: 35
How fast was your rate of decline: gradual until the age of 44, then more rapid
What are your current symptoms: thyroid problems (currently under treatment), severe muscle pain, severe fatigue, IBS, brain fog
Number of years since you developed symptoms of fibromyalgia: 18
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 3
Describe the extent of your brain fog: memory problems, problems with numbers, misread things
Estimate number of doctors you have seen for Fibro related symptoms: 4
Do your doctors tend to focus on all your Fibro symptoms: no
Do your doctors treat your symptoms individually or collectively: collectively
Describe your experience with doctors: two misdiagnosis - lupus and arthritis
What remedies or medications have you tried: Lyrica pain medication
What makes you feel better: thryoid treatment
What makes you feel worse: stress
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: no
Have you tried any thyroid specific treatments: radioactive iodine threatment (ongoing treatment)
Your theories or comments:
Are we missing any important questions:

08/21/2009
First Name: Jose
Age: 20
Male or Female: Male
City: Los Angeles
State/Province: California
Country: US
How long have you lived there: 20 years
Where were you born: Los Angeles
Is this the first time you have taken our questionnaire: yes
If not, why are you returning: n/a
Are you still working: no
What is Your Line of Work: Student
How has Fibro affected your ability to work: Barely making it through, weighs on every decision, need lots of pain meds
How has Fibro affected your life: In everyway possible, hampering every moment and decision, constant pain despite strong medications and never ending illness
What were your first symptoms: Sharp pain in my arms and legs
Your age at onset of symptoms: 19
How fast was your rate of decline: Do not understand question
What are your current symptoms: Severe pain that has spread to all areas of my legs, arms, shoulders, feets/hands, extreme fatigue and bad weakness in muscles
Number of years since you developed symptoms of fibromyalgia: 1 and a half
Do your symptoms include brain fog: Yes, severe cognitive disruptions and memory lapses
Number of years since you developed the brain fog: 2 years
Describe the extent of your brain fog: Really bad short-term memory, trouble reasoning and utilizing cognitive processes, lack of mental energy, bad memory lapses and forgetfulness
Estimate number of doctors you have seen for Fibro related symptoms: 7-10
Do your doctors tend to focus on all your Fibro symptoms: No
Do your doctors treat your symptoms individually or collectively: They try to adress as many as possible, but its impossible
Describe your experience with doctors: They tend to underestimate my pain or act condescending to me, or act like its all psychosomatic despite me knowing it is real horrible pain 24/7, and it is really strong and my emotions don't affect it at all, and it is really hard to find sympathetic doctors willing to help
What remedies or medications have you tried: Vitamins, Guafeinisin, Steroids, Anti-virals and anti-biotics, accupuncture
What makes you feel better: None, only pain meds
What makes you feel worse: Stimulants, or anything that heightens sensitivity
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride: no
Have you made dietary changes to avoid any other neutrotoxins: no
Have you tried any thyroid specific treatments: no
Your theories or comments: I have lots of theories, thats what I spend most of my time trying to figure out
Are we missing any important questions: no

08/21/2009
First Name: Larry
Age: 57
Male or Female: Male
City: Frederick
State/Province: Maryland
Country: USA
How long have you lived there: 20
Where were you born: Washington DC
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: engineering
How has Fibro affected your ability to work: retired/disabled
How has Fibro affected your life: devastating
What were your first symptoms: facial swelling, neuropathy, pain, ache, fatigue, brain fog, depression, inability to organize, avoidance of complex tasks
Your age at onset of symptoms: 45
How fast was your rate of decline: rapid, several months. Illness peaked at two - three years.
What are your current symptoms: facial swelling, neuropathy, ache, fatigue, chest pain, visual disturbances, anxiety, poor sleep, sleep apnea,
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
Describe the extent of your brain fog: slow to process verbal instructions, severe memory failure, loss of short term recall, poor spacial visualization,
Estimate number of doctors you have seen for Fibro related symptoms: 20
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: 10% of his practice is fatigue and fibro patients.
What remedies or medications have you tried: galanthamine, aricept, opiates, pletal, lipoic acid, primrose oil, trental, ambien, klonopin, neurontin, cymbalta, vasodilators
What makes you feel better: opiates, alpha blockers, beta blocker, alcohol
What makes you feel worse: all ssri's, neurontin. Medications have a paradoxical effect.
Have you tried avoiding fluoride in your diet: yes
If so, which sources of fluoride: we use well water and have had well water since 1978. We do not use city water.
Have you made dietary changes to avoid any other neutrotoxins: No.
Have you tried any thyroid specific treatments: brief trial on t-3 which caused panic. Reverse t-3 was > 400 in 1997. Thyroid panel is normal. Reverse T-3 hasn't been checked since 1997.
Your theories or comments: My injury is from the diet pills fen/phen. I had pre-existing fibro pain that was not too limiting. The diet drugs caused acute facial swelling and neuropathy eight months into the weight loss. I also have heart valve damage. This seems to be a neurotoxic illness that involves the heart, probably a cardiomyopathy involving the nerves. Wife is similarly effected from the same medications and on the same time line.
Are we missing any important questions: This illness shares many symptoms with reflex sympathetic dystrophy and dysautonomia. It is a disruption of the autonomic nervous system. A common feature of most I meet with this is constant thirst.

08/21/2009
First Name: sandy
Age: 54
Male or Female: female
City: philadelphia
State/Province: pa
Country: usa
How long have you lived there: 15 years
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: no
What is Your Line of Work: textile design
How has Fibro affected your ability to work: don't have the energy for movement
How has Fibro affected your life: brought it to a standstill
What were your first symptoms: stabbing pain in buttocks and fatigue
Your age at onset of symptoms: ? 50, but maybe earlier; hard to tell with my depression
How fast was your rate of decline: since this past Christmas (8 months) very quickly
What are your current symptoms: dizziness, lethargy, deep shoulder muscle and neck pain, lower back pain, fever/chills, feeling like I'm carrying 100 lbs. on my body
Number of years since you developed symptoms of fibromyalgia: about 5
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 5
Describe the extent of your brain fog: anxiety makes it worse, sometimes I don't go out for fear of driving
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: Orthopedic surgeon performed spinal fusion on L-4 and L5 for herniated disk and scoliosis. Psychiatrist gave me antidepressants. Family doctor is the only one who will give me painkillers (Percoset--I only take 1/2 a day because they're so hard to get from doctors). Endochronologist #1 said I had hyperglycemia and osteopenia, Endochronologist #2 said my bloodwork was perfect. Rheumatologist said bloodwork was fine and she couldn't find anything else to call it (I've yet to hear her say the actual diagnosis); she put me on Savella.
What remedies or medications have you tried: for any and all symptoms: effexor, paxil, cymbalta, savella, neurontin, wellbutrin, lamictal, percoset, aspirin, tylenol, advil, tramadol, trazodone; supplements: iron, b-12, magnesium, fish oil, calcium. Maybe more, I can't remember.
What makes you feel better: percoset when I can get it. the savella was fabulous at first, felt better within a day, but now (6 weeks later) the effect has pretty much worn off.
What makes you feel worse: sitting or standing too long, sometimes either the perc or the savella will make me nauseous, 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 make my own yogurt and fruit leathers and eat mostly fresh fruits and vegetables and almost no meat.
Have you tried any thyroid specific treatments: no, all of the bloodwork said my thyroid and parathyroid were fine.
Your theories or comments: I believe it was triggered by a lifetime of anxiety/depression, an abusive childhood, an unhappy marriage, then a major mental trauma that affected my vision for over a month when I was 40, and the spine surgery when I was 50.
Are we missing any important questions: how common is suicide among fibromyalgics?

08/19/2009
First Name: Ann
Age: 65
Male or Female: F
City: EXCELSIOR SPRINGS
State/Province: Mo
Country: USA
How long have you lived there: 6 years
Where were you born: Independence Mo
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: home maker
How has Fibro affected your ability to work: yes
How has Fibro affected your life: severly Memory is affected, movement is affected ability to exercise is affected pain is almost unbearable in all areas of body especially in thumbs, front of knees and many joints
What were your first symptoms: Lyme disease was the lead off in 1994 progressed thru the years
Your age at onset of symptoms: 50
How fast was your rate of decline: regular progression from 50-63, at slow rate. rate increased in the last year and half
What are your current symptoms: joint pain, muscle pain especially in thumbs, hands, knees (front) and back area, and feet.
Number of years since you developed symptoms of fibromyalgia: 14
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 3
Describe the extent of your brain fog: loss of memory for periods of time. can't remember names of items, or places or people.
Estimate number of doctors you have seen for Fibro related symptoms: 5
Do your doctors tend to focus on all your Fibro symptoms: not usually.
Do your doctors treat your symptoms individually or collectively: collectively
Describe your experience with doctors: fair to moderate
What remedies or medications have you tried: celebrex, can't remember them all
What makes you feel better: celebrex, but only slightly
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:

08/19/2009
First Name: jr
Age: 51
Male or Female: male
City: ft myers
State/Province: fl
Country: lee
How long have you lived there: 28 years
Where were you born: il
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: marine mechanic
How has Fibro affected your ability to work: i can't
How has Fibro affected your life: to the point where i don't feel like i have a life
What were your first symptoms: muscle weakness
Your age at onset of symptoms: about 40
How fast was your rate of decline: progressively worsened,especially in last 1-2 years
What are your current symptoms: stiffness, muscle soreness, tingling,numbness,muscle twiches, tremors, sleep problems
Number of years since you developed symptoms of fibromyalgia: about 11
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: at least 2
Describe the extent of your brain fog: takes a while to focus whether just talking or doing something
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: poor
What remedies or medications have you tried: anti depressants, lyrica, savella
What makes you feel better: lyrica and savella help somewhat
What makes you feel worse: moving,straining,heat,standing,exercising
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 need to find a doctor who actually believes males get fibromyalgia too or if not, what's wrong with me
Are we missing any important questions:

08/15/2009
First Name: Suzanne
Age: 43
Male or Female: Female
City: Independence
State/Province: MO
Country: United States
How long have you lived there: 22 years
Where were you born: Chicago
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: Retail Store Manager
How has Fibro affected your ability to work: I have changed jobs three times in as many years, slowing down my pace and the physical demands on my body. Of course taking less demanding positions has meant less money as well.
How has Fibro affected your life: Well, I can't keep my Grandaughter for more than a few hours now. My husband thinks I am lazy or crazy because I can't go do and be all I once was. My kids don't come around much because they know it's tireing for me on my days off to have company and cook etc. I no longer am the one who does the Holiday meals nad such, I just can't. I hate to travel now. makes me tired and sore for days after. When I am working and a storm comes through the pain is often so bad that I have to go sit down for most of my shift or leave it is where I can. I am depressed on top of the agony that I feel every moment of every day. The good days are so very few and far between.
What were your first symptoms: Achey stiff constant feeling of swelling
Your age at onset of symptoms: 14
How fast was your rate of decline: Rapid from 20 on nearly to point of disabling
What are your current symptoms: Pain mostly in hips, legs and feet. Other spots on and off.
Number of years since you developed symptoms of fibromyalgia: 29
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 15
Describe the extent of your brain fog: Varies by day, some days I say i shouldn't be sent out without a Keeper and I mean it
Estimate number of doctors you have seen for Fibro related symptoms: 30+
Do your doctors tend to focus on all your Fibro symptoms: No... they don't really know what to do or say. they just write scrips
Do your doctors treat your symptoms individually or collectively: Mostly individually
Describe your experience with doctors: POOR! They only know what the drug companies tell them and they only tell them what ever they think will bring in the most money and not be covered by most insurance
What remedies or medications have you tried: That is a long list but most recently: Cymbalta, Flexaril, Neurontin, Synvisc, 5-htp, magnisum, malic acid, mega doses of fish oil, wellbutrin, every narcotic under the sun, mega doses of pycnogenol, systemic enzymes,
What makes you feel better: Good sleep on the rare occasion I get it. Being able to do things at my own pace and rest when I need to. Keeping blood sugar stable and little to no caffeine
What makes you feel worse: Weather too hot, too cold high humidity, storm front. Lack of sleep. Eating processed foods. Over foing it physically. STRESS!
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: Wouldn't kow how thought they were mostly inviromental or internally generated
Have you tried any thyroid specific treatments: Not Rx as Dr never thought the tests showed a neeed. Have done some supplemnts often thought they worked for first few days/weeks then nothing same old same old
Your theories or comments: The medical community does not understand this nad frankly until most of them live with it they are not going to take it seriouse enough to really figure it out
Are we missing any important questions:

08/15/2009
First Name: Josita
Age: 75
Male or Female: female
City: Albuquerque
State/Province: NM
Country: U.S
How long have you lived there: lifetime
Where were you born: NM
Is this the first time you have taken our questionnaire: Yes
If not, why are you returning:
Are you still working: No
What is Your Line of Work: retired
How has Fibro affected your ability to work: Constant pain
How has Fibro affected your life: Constant pain
What were your first symptoms: ten years ago
Your age at onset of symptoms: 9
How fast was your rate of decline: fast
What are your current symptoms: back and leg pain
Number of years since you developed symptoms of fibromyalgia: ten years
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: one year
Describe the extent of your brain fog: Unsure of where I am
Estimate number of doctors you have seen for Fibro related symptoms: ten years
Do your doctors tend to focus on all your Fibro symptoms: yes
Do your doctors treat your symptoms individually or collectively: yes
Describe your experience with doctors: Good
What remedies or medications have you tried: flexeril Cordosone shots
What makes you feel better: Some but not enough
What makes you feel worse: Walking
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: I don't know

08/14/2009
First Name: L A
Age: 51
Male or Female: Female
City: Fort Worth
State/Province: TX
Country: United States
How long have you lived there: 30 years
Where were you born: Michigan
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: Computer instructor.
How has Fibro affected your ability to work: I cannot lift over 20 pounds without experiencing a flare-up. At times "fibro-fog" makes it difficult to concentrate.
How has Fibro affected your life: See above. Plus, I have to get adequate rest to avoid flare-ups. When the weather is cold and damp, or hot and humid, I experience flare-ups. they are similar to what you feel in your muscles when you have the flu. I fatigue easier than I used to. i cannot dance more than one dance and cannot run more than a very short distance. When walking outdoors on uneven ground I use a cane to steady myself and help me walk more gracefully and faster - my balance is slightly unsteady on uneven ground. I do walk often for exercise and to keep my muscles strong. fortunately, my case of fibro is mild.
What were your first symptoms: My legs felt weak and unsteady, I was easily fatigued and could not lift or carry what I was used to.
Your age at onset of symptoms: 39 years old.
How fast was your rate of decline: Moderate. It went away as quickly as it came fro a short period, then came back and worsened. Then it levled off, then became mild, where it has stayed.
What are your current symptoms: I cannot lift over 20 pounds without experiencing a flare-up. At times "fibro-fog" makes it difficult to concentrate. Plus, I have to get adequate rest to avoid flare-ups. When the weather is cold and damp, or hot and humid, I experience flare-ups. they are similar to what you feel in your mucscles when you have the muscles when you have the flu. I fatigue easier than I used to.
Number of years since you developed symptoms of fibromyalgia: 12 years
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 10 years
Describe the extent of your brain fog: Mild to moderate - depends on how tired i am.
Estimate number of doctors you have seen for Fibro related symptoms: 0
Do your doctors tend to focus on all your Fibro symptoms: N/A I have no insurance, so I diagnosed myself using medical books and the "pressure point" system. I believe primarily in natural and alternative therapies.
Do your doctors treat your symptoms individually or collectively: N/A
Describe your experience with doctors: N/A
What remedies or medications have you tried: Ibuprofen, alfalfa tablets, echinaechea, Alleve, Tylenol 3.
What makes you feel better: Ibuprofen, alfalfa tablets, echinaechea, Alleve, Tylenol 3. Being warm when it is damp and cold, being in AC when it is hot and humid. Moderate exercise, sex - especially experiencing orgasms.
What makes you feel worse: Not taking Ibuprofen, alfalfa tablets, and echinaechea every day.
Have you tried avoiding fluoride in your diet: No
If so, which sources of fluoride: I use a fluoride-free toothpaste. I seldom take any RX medicines.
Have you made dietary changes to avoid any other neutrotoxins: I have been a vegetarian since 1996.
Have you tried any thyroid specific treatments: no
Your theories or comments: I think a positive attitude helps a great deal. During times of stress the fibro symptoms worsen. I also exercise by walking to the point where I stop just short of having a flare-up.
Are we missing any important questions: You might ask the level of a person's physical activity, such as work-related.

08/13/2009
First Name: DIANNE
Age: 61
Male or Female: FEMALE
City: LONGVIEW
State/Province: TX
Country: USA
How long have you lived there: LIFE
Where were you born: TEXAS
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: COMPUTER / JOB PLANNER
How has Fibro affected your ability to work: WORK UPSTAIRS / FATIGUE AGGRAVATES THOUGHT PROCESS
How has Fibro affected your life: TOO TIRED TO ENJOY ANYTHING
What were your first symptoms: LEG PAIN
Your age at onset of symptoms: 55
How fast was your rate of decline: YEARLY
What are your current symptoms: FATIGUE - BRAIN FOG - THIGH PAIN - FOOT PAIN - HEADACHES - FLU LIKE ACHES
Number of years since you developed symptoms of fibromyalgia: 6 YEARS
Do your symptoms include brain fog: YES
Number of years since you developed the brain fog: 6
Describe the extent of your brain fog: SEVERE - BETTER SOME DAYS
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: NO UNDERSTANDING - THINK IT'S ALL IN MY HEAD
What remedies or medications have you tried: CYMBALTA LYRICA CELEBREX
What makes you feel better: LAYING DOWN
What makes you feel worse: BEING IN A CROWD
Have you tried avoiding fluoride in your diet: NO
If so, which sources of fluoride: WHOLE HOUSE WATER FILTERS EXTRA FILTER ON SHOWER
Have you made dietary changes to avoid any other neutrotoxins: NO I DON'T KNOW WHAT THEY ARE
Have you tried any thyroid specific treatments: NO
Your theories or comments: MY SYMPTOMS SEEDED TO COME GO & WERE HELPED BY CHIROPRACTIC CARE. THEN I WAS EXPOSED TO VERY TOXIC HOUSE TRYING TO CLEAN IT. MADE MY SISTER & ME VERY ILL. MONO, PARVO & IT PUT ME INTO FULL BLOWN FIBROMYALGIA
Are we missing any important questions: I HAVE NEVER SEEN ANYONE ADDRESS THE LEG PAIN, ESPECIALLY OUTER THIGH & FEELING LIKE LEGS ARE SWOLLEN LIKE BALOONS BUT THEY REALLY AREN'T.

08/12/2009
First Name: Tamera
Age: 44
Male or Female: female
City: Winters
State/Province: Texas
Country: USA
How long have you lived there: 26 years
Where were you born: Pasadena Texas
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: no
What is Your Line of Work: childcare,elderly care
How has Fibro affected your ability to work: yes
How has Fibro affected your life: debilitating
What were your first symptoms: stiffness neck and shoulders
Your age at onset of symptoms: 2000
How fast was your rate of decline: 9 years
What are your current symptoms: widespread pain and stiffness all the tender points tender migrains stress full bowel diarea fatige lake of consitration being able to think like now stress mental fog osteoarthritis its on the list I have it
Number of years since you developed symptoms of fibromyalgia: on going 9 years
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 3 or more
Describe the extent of your brain fog: really bad simple things can't do can't think to get done
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: she's been my doctor for 15 years very sincer
What remedies or medications have you tried: prozac daypro flurbrophen, amitriptalin, cymbalta, celebrex, motrin,tylenal,miralax, louratab
What makes you feel better: nothing in constant pain
What makes you feel worse: exsertion
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride: don't no where to begin
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:

08/11/2009
First Name: Donna
Age: 46
Male or Female: female
City: Brunswick
State/Province: Maine
Country: USA
How long have you lived there: 5 years
Where were you born: Auburn, 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: Chaplain's Assistant, US Navy
How has Fibro affected your ability to work: yes, severe joint pain, stiffness all day and fatigue every day.
How has Fibro affected your life: I can't do things a normal mom would do at my age, I have had to stop distance running because of the pain.
What were your first symptoms: Flu like symptoms, stiffness, woke up one morning and could not function at all because of the pain.
Your age at onset of symptoms: 43
How fast was your rate of decline: Very quickly.
What are your current symptoms: Joint and muscle pain, fatigue, depression, stiffness--all day, mental confusion/fog, irritable, emotional, unexplainable low grade fevers
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: Forgetting names, appts, simple tasks.
Estimate number of doctors you have seen for Fibro related symptoms: 5
Do your doctors tend to focus on all your Fibro symptoms: Just one of my doctors has done that--my family doctor.
Do your doctors treat your symptoms individually or collectively: my family doctor has tried to address all of the symptoms associated with the fibromyalgia by sending me to various specialists--rhematology, pulmonology, orthopedics, etc.
Describe your experience with doctors: The rheumatologist was very demeaning and called my illness a "Sleep Disorder" which was dismissed by my family doctor who understands more of what i am going through. My family doctor at the base clinic has done more to help me care for myself and to feel better than any doctor i have ever had. My sleep study was negative for sleep disorder and i didn't get any other feedback from the pulmonologist. The orthopedic doctor has addressed my needs with regard to the osteoarthritis and degenerative condition i am experiencing and is supportive and knowledgable about my condition. The Occupational therapists i have seen also have been knowledgeable and helpful concerning my conditions and have assisted me in making my life easier.
What remedies or medications have you tried: Celebrex, lyrica, anti-depressants
What makes you feel better: Rest, ocean air, soaking in bath salts, drinking lots of water, eating a natural diet.
What makes you feel worse: Long hours at work, forgetting my medicine, overdoing exercise, not enough fluids, not enough quality sleep, changes in the weather, humidity (high), cold, heat.
Have you tried avoiding fluoride in your diet: yes
If so, which sources of fluoride: Water, cleaners, toothpaste,
Have you made dietary changes to avoid any other neutrotoxins: No.
Have you tried any thyroid specific treatments: No. thyroid is functioning fine.
Your theories or comments: I and my family are convinced that it may have been a combination of many of the vaccines I received as a result of my service in the military. I was also dating a gulf war vet and my symptoms happened only about a year after we had been together.
Are we missing any important questions: No.

08/09/2009
First Name: kim
Age: 50
Male or Female: female
City: dover
State/Province: illinois
Country: usa
How long have you lived there: 2 yrs
Where were you born: chicago
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: yes
What is Your Line of Work: I work for the postal service
How has Fibro affected your ability to work: I have been able to continue to work in fact I was working indoors as a clerk and recently went back to carrying the mail .
How has Fibro affected your life: I have to try to not get stressed out too much because I will have alot of fibro pain if I get upset about things .
What were your first symptoms: extreme tiredness no matter how much sleep I got
Your age at onset of symptoms: 47
How fast was your rate of decline: I waited about 8 months before I went to the doctor.
What are your current symptoms: I still have problems with tiredness I just push through it . If I get stressed I will get shooting pains in my bones . I have IBS type problems because of the fibro.I take a drug for chronic pain and it helps me sleep and takes care of most of my pain problems thank god !!
Number of years since you developed symptoms of fibromyalgia: 3
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: Well at times I can get my thoughts organized and I will call things by the wrong name like at work I would call the calendar a map .I would call clothes pins paper clips . etc...
Estimate number of doctors you have seen for Fibro related symptoms: 2
Do your doctors tend to focus on all your Fibro symptoms: My doctor wants to know if the meds are working . I had to have them upped after 6 months on it but since that time I have been on the same dosage for about a year now.
Do your doctors treat your symptoms individually or collectively: collectively
Describe your experience with doctors: I told my doctor about my symptoms and she tested me for lupus and gout and different arthritis'all came back negative . So she sent me to a specialist . he diagnosed me w/ fibro
What remedies or medications have you tried: the specialist told me I could take a whole flexeral a night time which would take care of my sleeping problem and that is half the battle , Once you get enough sleep alot of the pain goes away . Well that did not work so my regular doctor put me on Elavil . It has worked very well for me .
What makes you feel better: I try to keep from getting too upset about things . That helps with the bone pain .
What makes you feel worse: getting stressed .
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 feel I have had fibro for a lot longer than 3 years . I have had hip pain for over 15 years at times to the point that I could hardly walk . I feel the reason that fibro has developed in me is because i have lived a very stressful life and I would hold in all of my feelings . I feel because of this my body has attacked itself in order to cause me to have to slow down and eliminate stress in my life.
Are we missing any important questions: none that I can think of

08/08/2009
First Name: Vicki
Age: 58
Male or Female: female
City: Morrow
State/Province: GA
Country: USA
How long have you lived there: 7 years
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: self-employed
What is Your Line of Work: real estate investor, landlord
How has Fibro affected your ability to work: Limited amount of time to work during the day. I can't work past 3PM. Brain fog causes me to make bookkeeping mistakes. Fatigue keeps me from watching contractors work and I get ripped off all the time.
How has Fibro affected your life: I can't concentrate so I can't study and become a riding instructor where I volunteer. I can't go out in the evenings because of fatigue so I have limited dating time. I can't go hiking, skiing, etc I lost my life.
What were your first symptoms: When I got up in the morning my ankles wouldn't bend and I had a hard time walking down my stairs.
Your age at onset of symptoms: 12 for 6 months then again at 49
How fast was your rate of decline: 9 months.
What are your current symptoms: muscle pain. fatigue. brain fog. tight muscles. can't get to sleep or stay asleep.
Number of years since you developed symptoms of fibromyalgia: nine
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 9
Describe the extent of your brain fog: I feel spacy. I can't remember. I can't concentrate. I can't stay focused if trying to study.
Estimate number of doctors you have seen for Fibro related symptoms: never said I had it
Do your doctors tend to focus on all your Fibro symptoms: My gp doesn't say I have fibro, he just says that you can't get well if you don't sleep
Do your doctors treat your symptoms individually or collectively: individually
Describe your experience with doctors: He doesn't want to acknowledge it.
What remedies or medications have you tried: 25 mg trazadone to get to sleep 10 mg elavil for more energy 2.5 mg valium to help me get to sleep prescription diuretic prednisone is wonderful but my doctor won't prescribe it
What makes you feel better: prednisone cures all my symptoms but you can't take it on a regular basis If I drink way too much and pass out, the next day I have no muscle pain because I was totally relaxed when I slept. Drinking alcohol, eating chocolate, caffeine or overeating gives me endorphins and I feel a lot better. Caffeine helps.
What makes you feel worse: Stress makes me feel a lot worse.
Have you tried avoiding fluoride in your diet: no but I use filtered water
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: no
Have you tried any thyroid specific treatments: I've had my thyroid tested 5 times and it comes back normal.
Your theories or comments: I took Naltrexone to stop drinking and it made me feel the best I'd felt in 10 years. I think low-dose naltrexone is the cure and that the main problem with fibromyalgia is low endorphins.
Are we missing any important questions: What do you eat/drink that makes you feel better? I feel the best when I drink alcohol, eat chocolate, drink caffeine, overeat. Each these increase your endorphins.

08/07/2009
First Name: Teg
Age: 43
Male or Female: female
City: Phoenix
State/Province: AZ
Country: USA
How long have you lived there: 23 years
Where were you born: St. Paul MN
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: part time only
What is Your Line of Work: Reservations from Home for hotel industry.
How has Fibro affected your ability to work: low energy, general achiness,
How has Fibro affected your life: Decreased quality of lifestyle, little energy for exercise, weight gain, hopelessness at times, not as active,
What were your first symptoms: depression then extreme tiredness
Your age at onset of symptoms: 27
How fast was your rate of decline: slow but constant
What are your current symptoms: achiness tiredness muscle pain brain fog
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: 15
Describe the extent of your brain fog: spacey very poor short term memory
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: No
Describe your experience with doctors: They're not very helpful and commonly prescribe medication with severe side effects. Today, a doctor prescribed lyrica and after research, I'm seeing it can cause suicidal thoughts and weight gain. This is not what someone with fibroymyalgia needs.
What remedies or medications have you tried: I like FlexMend for aches (Whole Foods supplement). I'm going to try SAM E and perhaps melatonin again at night. I may start taking ibuprofin at low does for pain.
What makes you feel better: Exercise when I am not too fatigued, massage therapy monthly, drinking lots of water, Omega 3's seem to help
What makes you feel worse: I'm pretty sure caffeine is not helpful in this case and sugar is terrible. Both, unfortunately, provide immediate energy.
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. I avoid additives/chemicals and eat a pretty healthy diet. Perhaps I should discontinue eating meat? I only eat red meat once/month
Have you tried any thyroid specific treatments: No. My thyroid always comes back normal.
Your theories or comments: I think sugar and white flour and probably caffeine should be eliminated from most diets. I need to drink more water. I need to be committed to an exercise plan.
Are we missing any important questions: No, thanks for looking for solutions.

08/07/2009
First Name: Tracie
Age: 44
Male or Female: female
City: social circle
State/Province: georgia
Country: usa
How long have you lived there: 7 years
Where were you born: covington 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: painting
How has Fibro affected your ability to work: YES
How has Fibro affected your life: YES
What were your first symptoms: flu like symptoms became very lifeless had no energy
Your age at onset of symptoms: 32
How fast was your rate of decline: quick
What are your current symptoms: constant muscle aches in shoulders,neckand lower back.Jaw and myofacial pain on legs.pain in the feet
Number of years since you developed symptoms of fibromyalgia: 12
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 6
Describe the extent of your brain fog: loss of memory,concentration and unable to complete tasks
Estimate number of doctors you have seen for Fibro related symptoms: 2
Do your doctors tend to focus on all your Fibro symptoms: yes
Do your doctors treat your symptoms individually or collectively: collectively
Describe your experience with doctors: I have a wonderful relationship with my doctor
What remedies or medications have you tried: guafinisen.lyrica cymbalta lortab soma
What makes you feel better: lortab soma
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: no
Your theories or comments: I believe that being burned and my fathers death and also being in a semi truck accident the combination has my nervous system nessed up
Are we missing any important questions: no

08/05/2009
First Name: Carol
Age: 46
Male or Female: female
City: Reidsville
State/Province: NC
Country: USA
How long have you lived there: 23 yrs
Where were you born: Centreville,IL
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: yes
What is Your Line of Work: nurse
How has Fibro affected your ability to work: makes daily tasks painful and difficult
How has Fibro affected your life: quality of life decreased=pain diminishes activity levels and ability to participate in many activities, can't lose weight
What were your first symptoms: severe fatigue, muscles pain
Your age at onset of symptoms: 32
How fast was your rate of decline: One week I could bike 10 miles per day. The next week I could barely walk to the mailbox.
What are your current symptoms: Muscle pain, fatigue, multiple allergies, sometimes brain fog or difficulty retrieving words
Number of years since you developed symptoms of fibromyalgia: 14
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 14
Describe the extent of your brain fog: trouble retrieving nouns, low concentration, disinterest in daily participation in ADL's
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: most act like I'm a hypochondriac, lazy, depressed, or stupid
What remedies or medications have you tried: herbs, exercise, massage, medications, antidepressants, heat
What makes you feel better: Nuorontin, hot showers, massage
What makes you feel worse: stress, doing nothing for TX
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: more fiber, fresh foods
Have you tried any thyroid specific treatments: no
Your theories or comments:
Are we missing any important questions:

08/04/2009
First Name: leann
Age: 51
Male or Female: female
City: altus
State/Province: ok
Country: usa
How long have you lived there: 25 years
Where were you born: Missouri
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: medical laboratory, pathology, medical transcription
How has Fibro affected your ability to work: pain with repetative activity in any position. Sitting causes back pain and sitting with arms extended causes pain in neck, shoulder, arms, hands. Over-exertion causes fatigue that requires bedrest for at least a full day.
How has Fibro affected your life: Limits daily activities. Limits ability to work for any sustained period of time. Interupts sleep.
What were your first symptoms: Tingling pains in arms and legs during night which were worsened by rubbing them; rubbing the affected part caused such irritation that I felt as though I HAD to get out of bed. Severe fatigue.
Your age at onset of symptoms: 43
How fast was your rate of decline: It was 7 years from diagnosis until I quit working.
What are your current symptoms: Chronic muscle pain. Joint pain. Severe chronic fatigue.
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: 2
Describe the extent of your brain fog: I had trouble at work with doing tasks in the proper order and remembering to do certain tasks. I have trouble remembering common words, peoples names - including family.
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 - meds for pain, inflammation, and sleep.
Describe your experience with doctors: Most GP's had little experience with fibromyalgia and tended to just treat the symptoms.
What remedies or medications have you tried: Celebrex, Cymbalta, Lyrica, Flexeril, Elavil, Ultram.
What makes you feel better: Warm baths and a good nights sleep.
What makes you feel worse: Cold, lack of sleep.
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride: tap water
Have you made dietary changes to avoid any other neutrotoxins: no
Have you tried any thyroid specific treatments: no
Your theories or comments: Have heard a lot lately about vitamin D defiency and am interested in seeing if this supplement would help my symptoms.
Are we missing any important questions:

08/02/2009
First Name: Susan
Age: 52
Male or Female: f
City: umatilla
State/Province: fl
Country: lake
How long have you lived there: 30yrs
Where were you born: lake worth, 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: bookeeping/accounting
How has Fibro affected your ability to work: seizures, falling down,extreme headaches, fatigue, sensitive to light & movement, can't drive, due to movement I wear a mask in moveing vechiles & due light flashes wear the mask during lightning storms
How has Fibro affected your life: see above, no social life with movement & brite light, flashing light, flourescent etc
What were your first symptoms: left leg drag, or freeze
Your age at onset of symptoms: 7
How fast was your rate of decline: last 4 years very fast
What are your current symptoms: headaches, sleep apnea, daytime apnea, thyroid low, alot of falling, seeing; 3D, light sensitive, seixures from flashing light, color sensitve(open a beautiful can of paint = seizure
Number of years since you developed symptoms of fibromyalgia: started testing about 5 years ago when I became unable to ddrive
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 4
Describe the extent of your brain fog: sometimes sit a whole day unaware of time or what past during the day. forget my adress & phone no.,
Estimate number of doctors you have seen for Fibro related symptoms: 10
Do your doctors tend to focus on all your Fibro symptoms: no, most claim is in my mind
Do your doctors treat your symptoms individually or collectively: the only success I have for the past 3 years is from a dr. of chinese medicene who listnes to all my symptoms & prescribes herb tea for support
Describe your experience with doctors: close minded, 2 doctors claim I needed to see a physciatrist,3 doctors claim I should wait & see
What remedies or medications have you tried: steroids, beta blockers, herbal tea(rx), ibprophen
What makes you feel better: herbal tea, ibprophen , acupuncture
What makes you feel worse: ibprohen hurts my stomach
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: yes, growing some veg. w/o pesticides, more veg., less red meat, bottle water, when we can afford it organic food,
Have you tried any thyroid specific treatments: just synthroid
Your theories or comments: I have sisters with similar symptoms. All have under active active thyroid.6 sisters. 5 of us are currently seeking holistic help because of the attitude of regular medical doctors.
Are we missing any important questions:

08/02/2009
First Name: Cristina
Age: 39
Male or Female: female
City: Chicago
State/Province: IL
Country: USA
How long have you lived there: Most of my life
Where were you born: Texas
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: yes
What is Your Line of Work: I was a massage therapist, but am now a receptionist
How has Fibro affected your ability to work: I can't work in my chosen field anymore
How has Fibro affected your life: Too much to be able to write all at once. It has affected every aspect of my life, my relationships, my ability to be the kind of parent I want to be, my self-esteem, my love life, my ability to pursue the many interests that I have...and that affects me emotional wellbeing as well...
What were your first symptoms: I'm not sure because I'm not sure whether my most recent car accident was the BEGINNING of my Fibromyalgia or just exacerbated it. After the accident in 2003, I was stiif and sore and had trouble turning my head to the left (still do). Subsequently I kept thinking I had the flu...body/joint aches, skin sensitivity, low grade fever, fatigue, foggy thinking...
Your age at onset of symptoms: My age at that time was 33 but I had had other problems previously
How fast was your rate of decline: After the accident it was just like I never fully recovered.
What are your current symptoms: Including all symptoms because I'm not sure which ones to attribute to the Fibro: Body aches, joint pain and stiffness, fatigue, gi issues, hair loss, adult acne, bloating/fluid retention, allergies, restless legs, dry mouth, coated tongue, dry eyes, cold hands and feet, stabbing pains, abdominal/back pain, skin tags, tmj, headaches, etc
Number of years since you developed symptoms of fibromyalgia: 6.5 yrs since the accident in 2003. 5.5 yrs since diagnosis.
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: I feel like I've always had it, but worse in a flare
Describe the extent of your brain fog: I've gotten lost disoriented while driving on streets I've been on all my life...can't seem to do the simplest math at times or process verbal statements without a delayed reaction. Poor short-term memory
Estimate number of doctors you have seen for Fibro related symptoms: 4 plus
Do your doctors tend to focus on all your Fibro symptoms: Only the ones that specialized on Fibro or had other training like chiropractic in addition to the M.D.
Do your doctors treat your symptoms individually or collectively: The good ones treated them collectively
Describe your experience with doctors: Most have been negative...assembly-line hmo docs in a hurry...overworked and mis or under informed by their expensive medical schools. Treating individual symptoms with mostly harsh remedies laden with side effects. My best experiences were with a doctor who had an MD and DC, and one who specialized in Fibromyalgia and offered pharmaceutical AND natural options...unfortunately I had to choose the pharmacautical route because it was the only one my insurance would cover. It ended badly and I am now back to no treatment. I can't afford to buy all the supplements etc.
What remedies or medications have you tried: Diet/nutrition, exercise, massage therapy, chiropractic, Effexor, Ambien, Pepcid, Prilosec...
What makes you feel better: Eliminating refined carbohydrates, limiting carbs, smaller meals more often, adequate sleep, yoga/tai chi, redusing stress, massage therapy, chiropractic, sex, alcohol (short term)
What makes you feel worse: Inadequate sleep, refined carbs, junk food, most fruit, fatty foods, cereal, stress, cold environment, mold, household cleaners, most perfumes
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 sure
Have you tried any thyroid specific treatments: No, after being tested repeatedly they couldnt find a problem
Your theories or comments: I'm sure I will come back and add things as I remember
Are we missing any important questions: Not that I can think of at the moment

08/02/2009
First Name: juan
Age: 31
Male or Female: male
City: weslaco
State/Province: texas
Country: usa
How long have you lived there: 2 years
Where were you born: mexico
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: graduate student
How has Fibro affected your ability to work: hard to concentrate and focus, tiredness,lack of motivation
How has Fibro affected your life: unmotivated, hard to do tasks in the house, everything seems so hard to accomplish
What were your first symptoms: shortness of breath and unrest sleep
Your age at onset of symptoms: 19 years old
How fast was your rate of decline: well im now 31 and still progressing
What are your current symptoms: stiffness, low back pain, short of breath,anxiety,unable to concentrate and focus,low sex drive
Number of years since you developed symptoms of fibromyalgia: 12
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 7 or maybe more
Describe the extent of your brain fog: foget things like my SSN and things and otet common things
Estimate number of doctors you have seen for Fibro related symptoms: 15
Do your doctors tend to focus on all your Fibro symptoms: nope
Do your doctors treat your symptoms individually or collectively: individually
Describe your experience with doctors: terrible, sometimes I feel that I know more about whats going on than they do,They go for the easy solution, trying to hook me up with prozac or something.
What remedies or medications have you tried: Yoga, no white flour and sodas, Im vegetarian now but maybe I need more protein in my diet.
What makes you feel better: little exercise
What makes you feel worse: hard exercise, stress, not sleep enough.
Have you tried avoiding fluoride in your diet: yes
If so, which sources of fluoride: try to eat organic vegetables, filtered water, toothpaste fluoride free
Have you made dietary changes to avoid any other neutrotoxins: not eating meat
Have you tried any thyroid specific treatments: no
Your theories or comments: I think this is curable is just a stage where your nervous system is completely tired and the lack of good rest keeps you down, I think living in a farm eating plenty of organic produce will fix the problem.
Are we missing any important questions: No

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