Fibromyalgia Questionnaire & Results

Latest Update: 02/13/2012 

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30 QUESTIONNAIRE COMPLETED DATA FORMS FOR January 2010

01/31/2010
First Name: Bobbi
Age: 64
Male or Female: female
City: Ft. Lauderdale
State/Province: Fl
Country: USA
How long have you lived there: 20 Yrs
Where were you born: 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: Nursing
How has Fibro affected your ability to work: No. I still work my reg. shift 5 days a week.
How has Fibro affected your life: Yes. My life consist going to work then Home.
What were your first symptoms: Constant burning in shoulders, neck, joints, legs, and feet.Being extremely tired. Unable to sleep because of pain.
Your age at onset of symptoms: 58
How fast was your rate of decline: It gradually got worse over the months after I started feeling the pain.
What are your current symptoms: Burning in certain areas, leg muscles, elbows, neck and shoulders. Restlessness. Unable to sleep. Numbness in bilat. hands.
Number of years since you developed symptoms of fibromyalgia: 6 years
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: 3
Do your doctors tend to focus on all your Fibro symptoms: My MD at this time is helpful and seems understanding.
Do your doctors treat your symptoms individually or collectively: Individually
Describe your experience with doctors: Most Drs. do not consider this a big problem and certainly do not believe in Fibromyalgia.
What remedies or medications have you tried: Pain and sleeping meds.Now I am eliminating gluten. sugar, and drinks of any kind. Only water.
What makes you feel better: My new diet.
What makes you feel worse: Sugar and diet cokes.
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: I find my diet is more helpful than any medications.
Are we missing any important questions: no

 

01/31/2010
First Name: ashton
Age: 23
Male or Female: female
City: boulder
State/Province: co
Country: usa
How long have you lived there: 3 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: student and cashier at a restaurant
How has Fibro affected your ability to work: i've had to call off a few times, but i usually power through it
How has Fibro affected your life: the fatigue and pain i experience often makes me irritable and not wanting to do anything but lay on the couch all day. the "fibro fog," when bad, makes me feel like i'll never be normal again. it's terrible.
What were your first symptoms: constant fatigue, trigger points in my shoulders
Your age at onset of symptoms: 18
How fast was your rate of decline: slow
What are your current symptoms: fatigue, trigger points, fibro fog, numbness/tingling in extremities that wakes me up from sleep, migraines, sensitivity to gluten & dairy, non-cardiac chest pains occasionally
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: 1
Describe the extent of your brain fog: it comes and goes. some days i do not notice it; some days it's so bad i won't allow myself to drive a car. 5 days out of 7 it's not too bad.
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: i've given up on allopathic doctors. i manage fibro now through diet (mostly raw) and yoga
What remedies or medications have you tried: the raw diet, yoga, stress-reduction, positive thinking
What makes you feel better: all of the above
What makes you feel worse: stress, dehydration
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: perhaps unintentionally through the raw diet
Have you tried any thyroid specific treatments: no
Your theories or comments:
Are we missing any important questions:

 

01/30/2010
First Name: Terry
Age: 57
Male or Female: female
City: Plain City
State/Province: Ohio
Country: United States
How long have you lived there: 5yrs.
Where were you born: Jacksonville, Fla.
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: neonatal nurse practitioner
How has Fibro affected your ability to work: in so much pain and so fatigued by the time I come home from work
How has Fibro affected your life: Harder to do everyday activities. Has caused depression. Never a day w/o pain.
What were your first symptoms: joint pain and fatigue. Memory loss..."foggy" feeling
Your age at onset of symptoms: 48
How fast was your rate of decline: gradual
What are your current symptoms: same, joint pain, fatigue and inability to sleep
Number of years since you developed symptoms of fibromyalgia: almost 10
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: almost 10...on and off.
Describe the extent of your brain fog: Have trouble remembering things, trouble getting started in the morning, don't "grasp" things like I used to.
Estimate number of doctors you have seen for Fibro related symptoms: 3
Do your doctors tend to focus on all your Fibro symptoms: now my Dr. does
Do your doctors treat your symptoms individually or collectively: individually
Describe your experience with doctors: on the whole, pretty good. My current rheumatologist is wonderful!
What remedies or medications have you tried: neurontin,lyrica,trazadone,cymbalta
What makes you feel better: a massage
What makes you feel worse: working 12-14hrs/day
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: no
Have you tried any thyroid specific treatments: no
Your theories or comments: no theories...wish there was one!
Are we missing any important questions: no

 

01/27/2010
First Name: L.
Age: 33
Male or Female: female
City: MILDURA
State/Province: victoria
Country: australia
How long have you lived there: 33 years
Where were you born: mildura
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: winemaker
How has Fibro affected your ability to work: stress, nervous tension, jaw tension, migraines, anxiety, fluttering heart, thought processes impaired
How has Fibro affected your life: migraines are debilitating and it takes a while to relax in any situation, can't sleep, i feel all bound-up.
What were your first symptoms: Stress, nervous tension, jaw tension. I knew there was a problem after vintage last year when my body felt really sore all over and the stress and long hours was hurting me everywhere. My jaw tension was extreme and I was grinding my teeth at night and not sleeping more than 3 hours.
Your age at onset of symptoms: 30
How fast was your rate of decline: over 2 years
What are your current symptoms: Jaw tension mostly and sore shoulders.
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: 1
Describe the extent of your brain fog: scatter-brained, not switched on.
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: Collectively
Describe your experience with doctors: I am seeing a Naturopath. We are treating my hormonal imbalance as well. Often the remedies are expensive and I tend to run out of the supplements and suffer until I can see her again.
What remedies or medications have you tried: Metagenics Fibroplex Plus powder. Natural Fertility Management Multi-Vitamin and Mineral.
What makes you feel better: Metagenics Fibroplex Plus (Magnesium in highly bioavailable form)
What makes you feel worse: Not having 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: Trying to eat foods with no pesticides
Have you tried any thyroid specific treatments: Yes. Kelp Granules for Iodine.
Your theories or comments: I believe an illness triggered the condition. I think it was the mild glandular fever. I have read other theories that suggest mycoplasma may play a role in lowering the defense. I am taking Olive Leaf Extract in an effort to detox and rid my body of bacteria, virus & fungus etc and improve my immune system. I am taking an amino acid blend with Tyrosine & Tryptophan for endocrine function. And, I am about to buy some products from healthier-harvest.com. The Deep Sea Minerals and Collastin support. It seems that our bodies are mal-nourished and our foods are being depleted of bio-available minerals and nutrients.
Are we missing any important questions:

 

01/25/2010
First Name: C.
Age: 37
Male or Female: female
City: Eastern Passage
State/Province: Nova Scotia
Country: Canada
How long have you lived there: 22 yrs
Where were you born: Halifax, Nova Scotia
Is this the first time you have taken our questionnaire: Yes
If not, why are you returning:
Are you still working: Yes
What is Your Line of Work: Medical Laboratory Technologist
How has Fibro affected your ability to work: Somewhat, I find I am tired, get tension headaches and bouts of insomnia and I am forgetful. I still work full time but I take more sick days that I would normally take due to the fatigue.
How has Fibro affected your life: I became depressed, less active, moody, withdrawn from my family. I have felt alone for the past 10 years trying to convince my doctor that is wasn't depression, that the depression was result of the other pain/fatigue etc. I feel guilty that I put all of the housework on my husband and kids, I have no drive to clean (working all day taps me out) or interact with my family, just want to crawl in a hole and sleep and feel human again
What were your first symptoms: fatigue
Your age at onset of symptoms: 20
How fast was your rate of decline: Was slow and manageable up until about 8 years ago
What are your current symptoms: depression, fatigue, joint stiffness (especially in the morning), IBS, plantar faciitis, weight gain (which has probably caused the plantar faciitis)
Number of years since you developed symptoms of fibromyalgia: 17
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 10
Describe the extent of your brain fog: Just short term memory loss (can't remember what I was doing), short attention span
Estimate number of doctors you have seen for Fibro related symptoms: 1
Do your doctors tend to focus on all your Fibro symptoms: No I never really gave a good run down of all my symptoms at once, just complained of whateve was ailing me at the time.
Do your doctors treat your symptoms individually or collectively: Right now I am being treated collectively. I have been put on Lyrica for pain (which is helping me sleep) and take Pristiq for the depression.
Describe your experience with doctors: Frustrating, it has taken me almost 13 years for her to recognize that the anti-depressants weren't working and that there was something else wrong with me.
What remedies or medications have you tried: Zoloft, Effexor. Currently taking Pristiq and Lyrica
What makes you feel better: Exercise usually does if I can get into it (2 years ago I was running up to 7.5km at once), right now I have alot of joint and muscle pain as well as the plantar faciitis to deal with.
What makes you feel worse: Inactivity, being overtired, PMS seems to make everything worse, I seem to be especially sensitive to fatigue and pain for about 2 weeks before my period. I think inactivity is the worse, my symptoms seem to spike badly after stopping exercise, especially if I have been exercising alot and stop.
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 still leaning towards having some sort of thyroid issue that hasn't been discovered. My doctor hasn't tested anything other than TSH, so no antibody testing. I also haven't been tested for lupus (all my inflammatory tests come back negative). I have no real theories on this, it just sucks!
Are we missing any important questions:

 

01/25/2010
First Name: Martha
Age: 62
Male or Female: female
City: Richmond
State/Province: VA
Country: US
How long have you lived there: 23 years
Where were you born: Jamestown, 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: mixed media artist, retired nurse
How has Fibro affected your ability to work: tire easily, back pain, knee pain, leg pain when standing for long periods of time
How has Fibro affected your life: slowed me down
What were your first symptoms: knee pain, stiffness, difficulty climbing stairs
Your age at onset of symptoms: 61
How fast was your rate of decline: slow
What are your current symptoms: leg pain esp. at night, back pain, stiffness, mild brain fog
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: 1
Describe the extent of your brain fog: mild
Estimate number of doctors you have seen for Fibro related symptoms: 2
Do your doctors tend to focus on all your Fibro symptoms: Go home and live with it, come back if gets worse.
Do your doctors treat your symptoms individually or collectively:
Describe your experience with doctors: My family doctor sent me to a rheumatoligist. He talked with me about my symptoms and determined I have mild fibromyalgia.
What remedies or medications have you tried: none
What makes you feel better: warm jacuzzi baths
What makes you feel worse: A lot of walking or cleaning the house. I've learned to pace myself.
Have you tried avoiding fluoride in your diet: I have well water and only get some in toothpaste
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: I've lost some weight and intend to lose more. Eat more fruit and veggies.
Have you tried any thyroid specific treatments: no
Your theories or comments: I couldn't believe how quickly I went from normal to having these pains and symptoms.
Are we missing any important questions:

 

01/24/2010
First Name: Denise
Age: 58
Male or Female: Female
City: Philadelphia
State/Province: PA
Country: United States
How long have you lived there: 58yrs
Where were you born: Philadelphia, PA
Is this the first time you have taken our questionnaire: no
If not, why are you returning:
Are you still working: no
What is Your Line of Work: sales
How has Fibro affected your ability to work: yes
How has Fibro affected your life: yes
What were your first symptoms: joint and pack pain
Your age at onset of symptoms: 52
How fast was your rate of decline: quickly after an accident in 2003
What are your current symptoms: joint, back and muscle pain
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: I can't remember details of a situation or forget things I use to know
Estimate number of doctors you have seen for Fibro related symptoms: 6
Do your doctors tend to focus on all your Fibro symptoms: sometimes
Do your doctors treat your symptoms individually or collectively: I'm not sure what she does
Describe your experience with doctors: impatience
What remedies or medications have you tried: medication, exercise, vitamin supplements and pain management techniques
What makes you feel better: combination of all remedies
What makes you feel worse: not figuring out which remedy I should use
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: no
Have you tried any thyroid specific treatments: yes
Your theories or comments:
Are we missing any important questions: no

 

01/24/2010
First Name: nancy
Age: 33
Male or Female: female
City: bensalem
State/Province: pa
Country: usa
How long have you lived there: 33 years
Where were you born: philadelphia, pa
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: no
What is Your Line of Work:
How has Fibro affected your ability to work: I cannot work due to the chronic pain. I was fired because I called out so many days and was in the hospital almost every week from the pain.
How has Fibro affected your life: I have not been able to get out of bed most days due to pain. I am very depressed because i am on constant pain. I have lost friendships, lost relationships and a very good job due to the Fibro. This has also affected my family and those closest to me because they have to watch me suffer on a daily basis. I can no longer function in society. I am irritable and have lost some of my most precious personality traits. I used to have a great sense of humor and usually happy go lucky. I am now cranky, irritable and suffering all the time.
What were your first symptoms: muscle aches, pain
Your age at onset of symptoms: 32
How fast was your rate of decline: very fast
What are your current symptoms: PAIN, muscle aches, fatigue, crankiness, irritability, depression
Number of years since you developed symptoms of fibromyalgia: 1
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: 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: most have been unable to treat me due to not knowing exactly what the problem is. I have had to endure doctors thinking i am drug seeking because they have no medical evidence or reason for the severity of pain. it has been most frustrating.
What remedies or medications have you tried:
What makes you feel better:
What makes you feel worse:
Have you tried avoiding fluoride in your diet:
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins:
Have you tried any thyroid specific treatments:
Your theories or comments:
Are we missing any important questions:

 

01/23/2010
First Name: J.
Age: 38
Male or Female: Female
City: Charlotte
State/Province: NC
Country: USA
How long have you lived there: 10 years
Where were you born: India
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: Yes
What is Your Line of Work: Home Maker
How has Fibro affected your ability to work: at times
How has Fibro affected your life: The facial pain and pain the the right hip area is almost there everyday and at times get so bad that I cannot do my routine chores too...Till I had seen a ENT yesterday for a chronic sinus infection I had I thought this was Sinus.. The pressure around the eye and cheek pain is the worst of all.
What were your first symptoms: At times with the pain in the left side of my face - on the cheek, left eye, left eyebrow, forehead, pressure in the left eye, pain in the ear and left side of the throat, teeth on the left side hurt. The hip pain makes my mobility hard.
Your age at onset of symptoms: 37
How fast was your rate of decline: Its there how it started at times it gets better but get worse again. The hip pain is actually better after I did some yoga, which I have stopped.
What are your current symptoms: The facial pain and pain the the right hip area is almost there everyday and at times get so bad that I cannot do my routine chores too.The pressure around the eye and cheek pain is the worst of all.
Number of years since you developed symptoms of fibromyalgia: 1 1/2 years
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 1 year
Describe the extent of your brain fog: The head feel heavy and has a throbbing sensation and feels that it is stuffed like a heavily stuffed nose and declines my ability to think or do.
Estimate number of doctors you have seen for Fibro related symptoms: one
Do your doctors tend to focus on all your Fibro symptoms: yes
Do your doctors treat your symptoms individually or collectively:
Describe your experience with doctors: saw a ENT and he asked me to consult a Neurologist saying that it is not sinus related
What remedies or medications have you tried: did Yoga for the hip and leg pain
What makes you feel better: Yoga seems to help the hip pain
What makes you feel worse: cold drinks, cold food, and cold weather
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: no
Have you tried any thyroid specific treatments: no
Your theories or comments: All of these started after I had my second child in Dec of 2008.
Are we missing any important questions:

 

01/23/2010
First Name: lisa
Age: 45
Male or Female: female
City: winter park
State/Province: fl
Country: seminole
How long have you lived there: 15 yrs
Where were you born: orlando
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: no
What is Your Line of Work: administrative
How has Fibro affected your ability to work: yes
How has Fibro affected your life: 40-70% depending on what day
What were your first symptoms: , tiredness, trouble sleeping 30 years ago, 22 years ago, more tiredness, 13 years ago, more tiredness and fatigue, memory problems, 11 years ago pain, more severe pain since.
Your age at onset of symptoms: 15, 23, 32, 34
How fast was your rate of decline: faster between 31 & 32 - up and down, every day different
What are your current symptoms: piercing/throbbing pain, severe tenderness, nervousness, insomnia, tiredness, short term energy
Number of years since you developed symptoms of fibromyalgia: Diagnosed 11 yrs ago, symptoms were obvious untill 12 or 13 yrs ago
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 13 years or longer
Describe the extent of your brain fog: sometimes not noticeable, short term - bad
Estimate number of doctors you have seen for Fibro related symptoms: 5
Do your doctors tend to focus on all your Fibro symptoms: no, poss. thyroid, lupus, nerve/muscle damage
Do your doctors treat your symptoms individually or collectively: some invidually since I have fibro and allergy, sinus problems
Describe your experience with doctors: eager to give medicine, but medicine doesn't completely dissolve the pain, some of the meds help, but not enough to put up with side effects
What remedies or medications have you tried: Xyrem (Sodium Oxybate), Lyrica, Milnacipran, Pregabalin, Prednisone, Tramadol, Cyclobenzaprine, Ultracet, Naproxen
What makes you feel better: Hit showers-baths, massage, healthy diet, occassional exercise, hanging out with kids
What makes you feel worse: Daily exercise, heavy schedule, heavy lifting, pully, pushing, rich diet
Have you tried avoiding fluoride in your diet: yes
If so, which sources of fluoride: tap water
Have you made dietary changes to avoid any other neutrotoxins: fired pest control for yard and home, try to avoid harmful cleaning products
Have you tried any thyroid specific treatments: tested neg, no dr will prescribe meds
Your theories or comments: Food allergies, home could be toxic, tried supplements, recommended amounts/types $200 or more a month - expensive - out of the question
Are we missing any important questions: what do people do when they have spent $$$$$ on doctors/meds/supplements? any no cost treatments? Tried 2 clinical studies, helped, but very slow progress and not enough med strength

 

01/20/2010
First Name: G
Age: 36
Male or Female: Female
City: Frederick
State/Province: MD
Country: USA
How long have you lived there: 11 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: yes
What is Your Line of Work: office-admin assist
How has Fibro affected your ability to work: not too bad yet, plus my boss' mother has fibro, so she is very sympathetic and understanding.
How has Fibro affected your life: it is a strain on my marriage and kids.
What were your first symptoms: i would have to say pain, I just remember always hurting
Your age at onset of symptoms: 10
How fast was your rate of decline: its been slow and steady, only really getting really bad in the last 10 or so years.
What are your current symptoms: pain, fatigue, brain fog, headaches, don't sleep, Nausea, Weight Gain, Dizziness, Cold Symptoms, TMJ, Anxiety, Depression, Dysmenorrhea, Muscle Twitches and Weakness, Memory Loss, Weather Changes
Number of years since you developed symptoms of fibromyalgia: its been at least 26 years prob more
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 26
Describe the extent of your brain fog: looking back over the day, I wonder how I got home, because I honestly don't remember. I can walk in the door and do not remember where I laid my purse or keys. Theres more but thats all I can remember right now, I'm in a fog right now.
Estimate number of doctors you have seen for Fibro related symptoms: 4
Do your doctors tend to focus on all your Fibro symptoms: yes and no, he listens to all, but i guess focuses on the pain and depression mostly
Do your doctors treat your symptoms individually or collectively: collectively
Describe your experience with doctors: my current doctor has been great. But before him, I literally thought i was going crazy, because my doctor at the time kept saying I was fine, all the tests came back neg. So of course I was desperate by the time I saw my current doctor.
What remedies or medications have you tried: Lyrica-awful! Cymbalta-better Flexeril-helps Trazidone- helps me sleep!
What makes you feel better: nothing
What makes you feel worse: lack of sleep, over doing chores or excerising, etc.
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:

 

01/20/2010
First Name: Gerri
Age: 34
Male or Female: Female
City: Grove City
State/Province: Ohio
Country: USA
How long have you lived there: 18 years
Where were you born: New Mexico 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: Cashier
How has Fibro affected your ability to work: yes
How has Fibro affected your life: I can no longer stand for any period of time, I can not lift more than a gallon of milk mowst days, I come home in so much pain I am in tears
What were your first symptoms: low grade pain in my joints
Your age at onset of symptoms: 32
How fast was your rate of decline: with in 2 years
What are your current symptoms: Severe Pain, Firbo fog, no sleep, depression, ibs, menstral pain, chest pain, jaw pains, memory loss
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 to turn off stove, forgetting medication, dates, putting frozen food in cabinets, losing everything
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: seems individually
Describe your experience with doctors: seems they don't know or understand
What remedies or medications have you tried: heat therapy sleep medication mild anti depressants ibprofin
What makes you feel better: nothing
What makes you feel worse: cold, moving to much, stress, sitting to 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: no
Have you tried any thyroid specific treatments: no
Your theories or comments:
Are we missing any important questions:

 

01/20/2010
First Name: D.A.
Age: 44
Male or Female: female
City: Ackerman
State/Province: MS
Country: Unitd States
How long have you lived there: 10 years
Where were you born: Saginaw, 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: teach nutrition to school age children
How has Fibro affected your ability to work: Yes, I stay very tired all the time and most weekends just want to stay in bed
How has Fibro affected your life: Yes, I ache all the time and miss out on doing things I use to do becasue of pain
What were your first symptoms: always feeling aching, tired and getting sick constantly
Your age at onset of symptoms: 40
How fast was your rate of decline: In the last 3 years, I have gone down very quickly.
What are your current symptoms: ache all over all the time, always feel so tired and always needing to rest
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: 2
Describe the extent of your brain fog: sometimes I will have no memory of conversations with people, and I have a hard time retaining information I am suppose to know for my job
Estimate number of doctors you have seen for Fibro related symptoms: 4
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: after being sick this summer and going with a new doctor, who I like very much and trust him.
What remedies or medications have you tried: I started out on lyrica and now I am taking savela.
What makes you feel better: the savela does not make me as sleeply as the lyrica did
What makes you feel worse: lyrica
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: no
Have you tried any thyroid specific treatments: no I have been tested for thyroid and do not have any problem with them
Your theories or comments: I would love to find something that I could take to give me more energy to get thru the day and not be so warn out always
Are we missing any important questions:

 

01/19/2010
First Name: Tune
Age: 53
Male or Female: Female
City: Comox Valley
State/Province: BC
Country: Canada
How long have you lived there: 18 years
Where were you born: Niagara Falls, 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: Teacher
How has Fibro affected your ability to work: Can't work, disabled.
How has Fibro affected your life: Fibro pain and symptoms make every day a struggle.
What were your first symptoms: Pain, stiffness, severely limited range of motion, dizziness, inability to concentrate after car accident in 1990.
Your age at onset of symptoms: 34
How fast was your rate of decline: Immediate decline due to car accident: upper body soft tissue injuries, dislocation of collarbone and ribs, misdiagnosed and untreated for 6 months, then diagnosed as fibromyalgia after continued disability prevented return to work. Treatment by chiro, Hellerwork, massage and physio therapy reduced the pain and symptoms. Partial recovery and return to work in 1995.
What are your current symptoms: Dealt with ongoing but relatively minor pain, muscle spasm and stiffness with various forms of body work including chiropractic, massage, physiotherapy, and continued to work until 2001 when at work, I was injured by exposure to ongoing high levels of airborne chemical (solvents mostly) and particulate contamination for a 5 week period until severe skin rash and respiratory problems made it impossible to function. Subsequently diagnosed with a long list of 'illnesses' such as RADS, MCS, CFS, FMS, IBS. Became severely chemically intolerant. Was deemed permanently disabled in 2007 by Workers Compensation. Now live a pure, but isolated life at home with some conditions vastly improved, but still deal with the Fibromyalgia symptoms and am in pain constantly, even after 8 years of following a very strict regime of avoidance of contaminants, and following an organic diet. Have continual pain in soft tissue joints and bone, muscle spasm, twitching, tingling and sometimes numbness in extremities, arms and legs fall asleep easily, severe muscular weakness, lack of energy due to chronic fatigue syndrome, as well as my ongoing chemical and food sensitivities.
Number of years since you developed symptoms of fibromyalgia: 19 years
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 9
Describe the extent of your brain fog: Forgetfulness, short attention span, severe memory lapses, easily distracted, lack of awareness, a feeling of thick-headedness, as if cobwebs need to be shaken out, and always feeling of the verge of a headache, even if I dont have a headache.
Estimate number of doctors you have seen for Fibro related symptoms: At least 12.
Do your doctors tend to focus on all your Fibro symptoms: Doctors focussed most on my chemical sensitivities, mostly ignoring my pain issues. Many doctors pretended that my symptoms were imaginary, that I couldn't be that ill from environmental contaminants.
Do your doctors treat your symptoms individually or collectively: Most doctors only would look at one symptom, or group of symptoms, such as respiratory issues, or chemical sensitivities.
Describe your experience with doctors: Most doctors in the beginning treated me badly and in a very dismissive, condescending manner. They were quick to tell me that chemically related symptoms are a form of mental illness, a form of anxiety, evidence that I was a malingerer, and so on, and that I only needed drugs and counselling in order to get on back to work. One environmental doctor in my area told me about MCS, FMS and CFS and how they are related and that I had them all, but he wouldn't agree to write any reports or deal with Workers Compensation. I finally had to go right to the top here in Canada, and got referred to Dr Bruce Carruthers, one of the authors of Heath Canada's Chronic Fatigue and Fibromyalgia consensus documents. I was treated in a gentle, kind a gracious manner by him, and he assured me that I wasn't mentally ill, and that I really had been seriously injured by my workplace contaminant exposure. The most important thing I learned from him is that I had to "learn to live in my box" and I have followed his recommendations ever since.
What remedies or medications have you tried: Early on I was put on Paxil, Clonazepam, and later on Effexor. When those made me much worse, I relied on Avoidance, body work of various kinds, total bedrest, organic diet, homeopathy, and herbal remedies.
What makes you feel better: I feel better with rest, avoidance of exertion, stress, and contaminants such as dusts and chemicals. I feel better following an organic chemical free, wheat/soy/corn/alcohol/chocolate/dairy free diet. I have much less joint pain when I take an herbal product called Zyflamend. I also use a variety of Homeopathic remedies for my everyday symptoms.
What makes you feel worse: Prescription drugs, exposure to chemicals, fragrances, solvents, and vehicle emissions are disabling to me, as I get too ill to function. Stress, lack of rest and exposure to certain foods seriously affect my day to day condition.
Have you tried avoiding fluoride in your diet: yes
If so, which sources of fluoride: I avoid all chemical exposures, including fluoride and chlorine. I won't use prescription drugs at all any more. I had a serious commercial water filtration system installed on our main water line which provided me with immense relief. I refuse all dental fluorides. We use no pesticides and follow an organic diet. No chemical or fragrance products are used.
Have you made dietary changes to avoid any other neutrotoxins: My biggest dietary change is to stop buying commercial processed foods and eat only fresh whole organic foods that I prepare myself. I also eat only foods that I know I tolerate well and avoid those that could cause symptoms. I take special care now to avoid all forms of wheat and gluten and all forms of food additives, artificial colourings and flavourings.
Have you tried any thyroid specific treatments: No thyroid treatments were ever tried since I never tested as needing any.
Your theories or comments: I have come to realize that Fibromyalgia, Chronic Fatigue Syndrome, and Multiple Chemical Sensitivities are all part of the same condition, CHEMICAL POISONING of some sort or other. Since chemical exposure is impossible to avoid in this day and age, I believe that sooner or later, everyone will eventually show the symptoms of Environmental Illness. We are already a world full of unhealthy people and getting sicker as the planet becomes more and more saturated with pollutants.
Are we missing any important questions: How many fibro sufferers get ill from chemicals and fragrances? Not just fluoride. How many were traumatized by the medical profession's treatment of them, or lack of treatment, which happens when doctors deny the chemical causation of illness. How many, like myself, were left to heal themselves, having nowhere to turn but to 'alternative' practitioners and a contaminant reduced holistic lifestyle. How many think they may have got fibro from an injury or exposure to some form of poison, chemical or contamination?

 

01/18/2010
First Name: Franki
Age: 47
Male or Female: femail
City: Atlanta
State/Province: Ga
Country: US
How long have you lived there: 4 years
Where were you born: Illinois
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: Transportation
How has Fibro affected your ability to work: It's impacted my ability to do anything else if I'm working. Working takes so much out of me, I don't accomplish anything else on the days I work.
How has Fibro affected your life: It has impacted every part of my life. Slowed me down and keeps me from doing so many things I want to do.
What were your first symptoms: Extreme exhaustion and pain throughout my body.
Your age at onset of symptoms: probably over 25 years ago
How fast was your rate of decline: over the past six years pretty fast.
What are your current symptoms: Pain, alot of pain, in my legs, kneck and muscles in general.
Number of years since you developed symptoms of fibromyalgia: probably 15 years ago
Do your symptoms include brain fog: yes when I'm really tired
Number of years since you developed the brain fog: always been there but mainly when I'm exhausted
Describe the extent of your brain fog: not being able to remember everyday things. I call it a senior momemt but brain fog makes a senior moment seem like nothing
Estimate number of doctors you have seen for Fibro related symptoms: at least 20
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: they mainly just want me to take anti depressants
What remedies or medications have you tried: massage, chriropractor, naturopathic(whole food supplements), exercise
What makes you feel better: a little bit of it all but being consistant is hard. Avoiding getting over tired and plenty of water.
What makes you feel worse: not enough sleep, to many soda's ( I notice a big difference here in the pain), not enough stretching(I constantly feel I need to stretch)
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: some, supplements
Your theories or comments: I used to keep it under control(or thought) with exercise and nutrition. Then my job required me to start working midnights. When I started working rotating shifts I quickly went down hill.
Are we missing any important questions: not sure, Any tramatic accidents or injuries maybe, I did have a severe fall when I was a teenager.

 

01/17/2010
First Name: Emma
Age: 33
Male or Female: Female
City: Sydney
State/Province: NSW
Country: Australia
How long have you lived there: 30
Where were you born:
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 can't do fulltime work so I freelance graphic design
How has Fibro affected your ability to work: can't hold down a fulltime office job even for a few days
How has Fibro affected your life: over 16 years of sometimes extreme pain and generally chronic pain, wit a few bouts of no pain, mainly when fasting or on HGH injections
What were your first symptoms: bad rib/gallbladder attack (same as I get today) at age 10. Just before puberty (hormones were already kicking in). These days FM pain is closely related to hormone cycles for me.
Your age at onset of symptoms: 10
How fast was your rate of decline: after the first bout at age 10, almost no pain symptoms until age 17. But plenty of other low thyroid symptoms. For example I was always in the top 1,2 or 3 in the class at school (academically) and by age 15 had such brain fog I could no longer do maths or concentrate in class.
What are your current symptoms: most hypothyroid symtoms plus pain in muscles, digestive issues, gallbladder attacks very frequently despite no stones and apparently no motility issues (when tested).
Number of years since you developed symptoms of fibromyalgia: Ignoring the first attack at age 10, I would say from 17, which is 16 years ago.
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 19
Describe the extent of your brain fog: can't do maths, forget a movie by the time the credits have rolled. Can't recall conversations I had yesterday, but have decent/good long term memory. Generally find it hard to have "clear" thoughts
Estimate number of doctors you have seen for Fibro related symptoms: 18
Do your doctors tend to focus on all your Fibro symptoms: no
Do your doctors treat your symptoms individually or collectively: some just laughed at me.
Describe your experience with doctors: only ONE doctor treated me AT ALL, and she is still my doctor today. She is brilliant and has helped me to stay alive and work and study etc all these years, enough to get by. I think I would have killed myself if not for her treatments
What remedies or medications have you tried: too many to list. Herbs, supplements, special diets, physical therapy, accupuncture, TCM, Ayurveda, yoga, meditation etc etc...
What makes you feel better: human growth hormone injections are the only thing that helps the pain at all.
What makes you feel worse: stress, eating protein, cold dry weather, junk food, lack of movement, lifting things
Have you tried avoiding fluoride in your diet: yes
If so, which sources of fluoride: toothpaste, drugs, tap water, never seriously did organic foods.
Have you made dietary changes to avoid any other neutrotoxins: vegetarian, I have found out what foods aggravate the FM.
Have you tried any thyroid specific treatments: yes. I am on oroxine, thyroid glandular, DHEA, magnesium, pregnenolone and I am prescribed HGH injections (which make life good), but can't always afford them because there is no govt subsidy.
Your theories or comments: I have had my blood tested and am always anaemic, extremely low IGF-1 levels, extremely low testosterone, messed up thyroid, borderline pernicious anaemia etc etc. When I take HGH injections at a high enough dose, I am almost completely symptom free and happy! I know for a fact that HGH fixes me, I don't know why I or others are deficient in it to start with, but I suspect I had a degree of deficiency from birth as I always exhibited hypothyroid symptoms. I regard FM as completely related to hypothyroidism and in my case at least hypopituiarism
Are we missing any important questions: yes, perhaps a question about depression, irritability, fatigue or mental state over the years.

 

01/11/2010
First Name: R.
Age: 58
Male or Female: F
City: Mexico
State/Province: Indiana
Country: USA
How long have you lived there: 15 years
Where were you born: Indiana
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: Vascular Technologist/ Lab/ Ultrasound/ Surgery
How has Fibro affected your ability to work: Too tired and sleepy too much pain slowed me down Mentally unable to stay alert enough. In this line of work it is very necessary to be alert.
How has Fibro affected your life: Do not care much about things as I did. Lack of good restful sleep makes me feel groggy and pain makes me not care about doing things much anymore. drugs just keep me feeling "drugged" but allow sleep. weight up and down drastically.
What were your first symptoms: Very blood red eyes, extreme pain in joints and body where all I could do is lay in bed and roll and cry.
Your age at onset of symptoms: 38
How fast was your rate of decline: It hit me very hard at first and slacked off and then gradually hit me in a very devastating way.
What are your current symptoms: Very tired. No desire to do much. Joint pain. some aches in body. I live with constant pain.
Number of years since you developed symptoms of fibromyalgia: 20
Do your symptoms include brain fog: YES!
Number of years since you developed the brain fog: 3
Describe the extent of your brain fog: Forget names, forget minor things I need to do at times. Forget lines in my prayers at times. I imagine I must seem like a simpleton to some people but that is ok. People do not understand this disease.
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: Individually and collectively
Describe your experience with doctors: My Rheumatologist is great. very supportive and tries his best to treat me the best he can. i can be a difficult patient.
What remedies or medications have you tried: Magnesium Tried cmybalta and many others like this. Body cannot tolerate them. Tried pain meds and narural things. muscle relaxants.
What makes you feel better: pain meds, muscle relaxants let me sleep.
What makes you feel worse: All this medicine makes me feel groggy. But, if I do not take it I feel worse for the wear by not taking it.
Have you tried avoiding fluoride in your diet: yes.
If so, which sources of fluoride: toothpaste. We have well water so i do not get it there. Our water has been tested. Also, I read everything I buy food wise. I do not eat much meat. I feel better if i do not eat that much and eat mostly fruit.
Have you made dietary changes to avoid any other neutrotoxins: Yes. I have read labels. Try to do all the organic way.
Have you tried any thyroid specific treatments: No
Your theories or comments: Ever heard of Chem trails???
Are we missing any important questions: No

 

01/10/2010
First Name: B.
Age: 72
Male or Female: f
City: Myrtle Beach
State/Province: SC
Country: usa
How long have you lived there: 4 yrd
Where were you born: England
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: no
What is Your Line of Work: retired
How has Fibro affected your ability to work: no
How has Fibro affected your life: yes
What were your first symptoms: aches and pains in my arms and igh muscles
Your age at onset of symptoms: 70
How fast was your rate of decline: mediumn
What are your current symptoms: muscle aches and pains
Number of years since you developed symptoms of fibromyalgia: 2
Do your symptoms include brain fog: not sure
Number of years since you developed the brain fog:
Describe the extent of your brain fog:
Estimate number of doctors you have seen for Fibro related symptoms: 2
Do your doctors tend to focus on all your Fibro symptoms: yes
Do your doctors treat your symptoms individually or collectively: collectively
Describe your experience with doctors: good
What remedies or medications have you tried: Lyrica
What makes you feel better: Warm weather and a hot bath
What makes you feel worse: 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: no
Have you tried any thyroid specific treatments: I had thyroid disease
Your theories or comments: My doctor prescribed prescription fluride as I had a lot of expencive dental work done, now I am wondering about it.
Are we missing any important questions: yes

 

01/10/2010
First Name: s.
Age: 40
Male or Female: female
City: indpls
State/Province: in
Country: us
How long have you lived there: 10 yrs
Where were you born: indpls
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: computers
How has Fibro affected your ability to work: yes
How has Fibro affected your life: yes
What were your first symptoms: chronic fatigue, brain fog, chronic sinus infections(starting once every 4 months than evry 2 until finally I was having to take antibiotics every two weeks)
Your age at onset of symptoms: 17, 23, 27
How fast was your rate of decline: very sporadic at first but has become more rapid in last 3 years.
What are your current symptoms: widespread pain, severe stiffness, severe fatigue, irritibility, swollen and numb hands and feet, anxiety, depression
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: 20
Describe the extent of your brain fog: cannot think of easy words, cannot remember where I put things, cannot think clearly unless I am not in pain, sporadic thoughts,
Estimate number of doctors you have seen for Fibro related symptoms: 5, 2, 8
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: some have treated me like a drug addict when I have talked about pain from fobro. I have had two doctors who were both very sypathetic to my complaints and treated me accordingly. The forst however did not like to use opiates so I felt like a ginue pig for a year of trying multiple anti depressants, anti-siezure, anti-anxiety medications. I tried Lyrica on and off for a year and it was too sedating. Most drugs ultimately contribute to the pain rather than get rid of it. Narcotics are the only thing that have helped. Fentyanyl is better than all of them but than the stress of being totally opiate dependant can cause problems of their own.
What remedies or medications have you tried: lyrica, anti-depressants(wellbrutran, prozac, cymbalta), neurontin,
What makes you feel better: opiates, rest, excericise, acupuncture(moxi-bustion), stretching, cognitive thinking,
What makes you feel worse: weather (barometric pressure change right before it rains or snows!!), stress, opiates (they make your pain response worse over time), certain foods(too much grease, too much salt not enough fruits and vegetables), lack of sunshine
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 a ballet dancer as a teenager and have always been physically active with a very slender and fit body. When these symptoms began to first appear in my late twenties it was devestating although I really ignored the symptoms for many years. Once I was diagnosed (I got three opinions and diagnosis) I had some relief to at least put a name to what I had been feeling for the past decade(I was diagnosed in 2007). The disease has become more debilitating over time. It especially effects my hands and arms which is very difficult to deal with. I have 3 yr old twin boys and it is very frustrating to not be able to even hold them on some days. I would love to find a cure that would allow me to get off opiates and have some quality of life. I am interested in finding the cause of this disease, the whole western model of just treating symptoms as opposed to finding a cure is flawed. If I could still afford acutpuncture I would be using that for paiin relief. I am also VERY interested in what Heperin treatments aill do.
Are we missing any important questions: Asking more about diet and about causes. I think people have intuition about these things and finding out what peoples gut feeling about what causes it would generate more insight than one might expect. I think that the recurring sinus infections requiring excessive anti-biotic use along with severe stress and I also think there is an environmental toxin that is also acting ss a catalyst for this disorder. I would also ask people when they feel the best.

 

01/10/2010
First Name: JAIMI
Age: 35
Male or Female: FEMALE
City: FREDERICKSBURG
State/Province: VIRGINIA
Country: USA
How long have you lived there: ALL MY LIFE
Where were you born: ARLINGTON VA
Is this the first time you have taken our questionnaire: YES
If not, why are you returning:
Are you still working: NO
What is Your Line of Work: WAS DUMPTRUCK DRIVER BUT NOW AM TOTALLY DISABLED
How has Fibro affected your ability to work: I CANT WORK..I CAN BARELY MOVE
How has Fibro affected your life: I HAVE NO LIFE,LAYING IN BED-OR SITTING IN A CHAIR. CAN BARELY MOVE WITHOUT ASSISTED HELP
What were your first symptoms: FLU LIKE VERY PAINFUL ACHEY ALL OVER MY WHOLE BODY
Your age at onset of symptoms: 34
How fast was your rate of decline: 1 YR
What are your current symptoms: FLU LIKE ACHEY SYMPTOMS ALL OVER MY BODY ALL THE TIME, MIGRAINES, BACKACHES, CANT SLEEP CAN BARELY MOVE. CANT BE TOO COLD OR TOO HOT, NAUSEA, BLOOD PRESSURE HIGH DUE TO CONSTANT PAIN, SWOLLEN ALL OVER
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: CANT THINK STRAIGHT THROUGH ALL THIS PAIN
Estimate number of doctors you have seen for Fibro related symptoms: 4
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: IVE HAD NO PROBLEM WITH THE DRS JUST THEY DONT KNOW WHAT TO GIVE ME NEXT FOR TREATMENT CUZ NOTHING WORKS NOT EVEN THE NARCOTIC DELAUTED!
What remedies or medications have you tried: DELAUTED, LYRICA, KEEPING WARM, CYMBALTA, SEVELLA, ETODOLAC
What makes you feel better: NOTHING
What makes you feel worse: MOVING AND BREATHING
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 SALT, NO CAFFEINE
Have you tried any thyroid specific treatments: I HAVE HYPOTHYROID ALREADY
Your theories or comments: FIBROMYALGIA SUCKS AND ITS A VERY DIBILITATING DISEASE
Are we missing any important questions: WHY CANT ANYONE FIND A CURE IM TIRED OF SUFFERING MY EVERYDAY LIFE AND EVERY BREATH I TAKE!!

 

01/10/2010
First Name: jennifer
Age: 27
Male or Female: female
City: vidor
State/Province: texas
Country: usa
How long have you lived there: 5 years
Where were you born: nederland 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 am a teachers aide with the life skills students(down syndrome,autism,MR,MS,ect.)
How has Fibro affected your ability to work: yes-i can't lift by myself anymore and some days i cant get sit or stand too long without hurting
How has Fibro affected your life: it has made it difficult to want to live-i hurt most of the time
What were your first symptoms: pain in neck and shoulder all the time-couldn't lift my L arm more than half way up
Your age at onset of symptoms: 26
How fast was your rate of decline: very fast i went from being completely healthy to having pain and depression everyday
What are your current symptoms: pain in neck and shoulders, pain in back and down legs-tingling in feet and hands, major depression,
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: 1
Describe the extent of your brain fog: sometimes i can't remember where i left my keys or if i did something already or i just forget altogether
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: indiv.
Describe your experience with doctors: they just tend to work on the pain or the depression- and i have to go to two doctors, one for pain,one for depression
What remedies or medications have you tried: lyrica, neurontin, gabitril, vivatil, lorcet, xanaflex
What makes you feel better: well the gabitril, xanaflex,v ivactil, lorceet was working but now it is not
What makes you feel worse: cold weather, if i get stressed, if it rains, or staying in the same place for to 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:
Your theories or comments: i hate fibromyalgia it has made my life a living heck- they tell me to try being "stress free" but i am only 27, have a full time job, am a wife, and mother of 4-how is that possible
Are we missing any important questions:

 

01/09/2010
First Name: Linda
Age: 57
Male or Female: Female
City: Valmeyer
State/Province: Illinois
Country: USA
How long have you lived there: 7 yrs
Where were you born: St. Louis
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, on the phone all day
How has Fibro affected your ability to work: sitting is gruesome
How has Fibro affected your life: have to laydown a lot when back hurts also have arthritis and spinal stenosis as well as sjogrens syndrome
What were your first symptoms: chronic severe lower back pain took two years to get a diagnosis and proper pain management
Your age at onset of symptoms: 54
How fast was your rate of decline: extremely fast
What are your current symptoms: occaisional pain in lower back
Number of years since you developed symptoms of fibromyalgia: 3
Do your symptoms include brain fog: use to
Number of years since you developed the brain fog: not sure
Describe the extent of your brain fog: I couldnt remember any thing for any length of time, say a series of numbers like a zip code could not remember long enough to type them in.
Estimate number of doctors you have seen for Fibro related symptoms: 4
Do your doctors tend to focus on all your Fibro symptoms: no tend to ignore or tell me to lose weight or give muscle relaxers
Do your doctors treat your symptoms individually or collectively: individually
Describe your experience with doctors: like they did not believe me finally went to one and said LOOK IM not crazy we need to get to the bottom of my problems not keep giving me new pills
What remedies or medications have you tried: massage, hot tub, muscle relaxers cymbalta
What makes you feel better: laying down
What makes you feel worse: sitting long periods or walking before the cymbalta
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride: all of the above
Have you made dietary changes to avoid any other neutrotoxins: no
Have you tried any thyroid specific treatments: yes I am on thyroid
Your theories or comments: looking back I see a long series of small problems that led up to the final rush of problems the last 3 years. Things that were always explained by some other thing turned out to be related to sjogrens and fibro
Are we missing any important questions: would like to hear about list of things you went to doctor for from early on

 

01/08/2010
First Name: Kris
Age: 56
Male or Female: female
City: Tucson
State/Province: AZ
Country: USA
How long have you lived there: 35 years
Where were you born: Virginia
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: musician
How has Fibro affected your ability to work: exhaustion, can't be reliable
How has Fibro affected your life: affected almost everything
What were your first symptoms: chronic fatigue Epstein Barr
Your age at onset of symptoms: 42
How fast was your rate of decline: got bad quickly but improved with thyroid support.
What are your current symptoms: pain in shoulders, neck and legs
Number of years since you developed symptoms of fibromyalgia: 14
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: they are getting better informed
What remedies or medications have you tried: anti-depressants Citomel
What makes you feel better: Citomel wheat and dairy free nightshade free
What makes you feel worse: stress wheat products
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: eliminated wheat cut down on nightshades
Have you tried any thyroid specific treatments: levoxyl Citomel
Your theories or comments: I'm getting the best response from Citomel/ liothyronine light exercise sleeping pills
Are we missing any important questions: sleep issues

 

01/06/2010
First Name: Kristin
Age: 28
Male or Female: Female
City: Henderson
State/Province: Nevada
Country: United States
How long have you lived there: 3 years
Where were you born: Chicago, Illinois
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: Attorney
How has Fibro affected your ability to work: Yes
How has Fibro affected your life: Yes
What were your first symptoms: Pain in mid-back area, persistent and relentless
Your age at onset of symptoms: 26
How fast was your rate of decline: over the past year significant decline
What are your current symptoms: exhaustion, chronic pain, IBS, muscle weakness
Number of years since you developed symptoms of fibromyalgia: 2
Do your symptoms include brain fog: no
Number of years since you developed the brain fog:
Describe the extent of your brain fog: Likely offset due to concerta (ADD)
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: Most were clueless, it took me going to Chicago to get diagnosed from a leading rheumatologist who unfortunately just dabbles in fibro
What remedies or medications have you tried: Lyrica, Soma, Tizanidine, Amytriptalin
What makes you feel better: Soma, Tizanidine, Amytryptialin
What makes you feel worse: Lyrica
Have you tried avoiding fluoride in your diet: No
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: No
Have you tried any thyroid specific treatments: No
Your theories or comments:
Are we missing any important questions:

 

01/05/2010
First Name: Lesley
Age: 32
Male or Female: Female
City: San Antonio
State/Province: Texas
Country: USA
How long have you lived there: 32
Where were you born: San Antonio
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: Workforce Operations Analyst
How has Fibro affected your ability to work: I find it hard to concentrate and multi-task.
How has Fibro affected your life: I can not do simple things I used to be able to do like shopping when ever I want. I can not lift anything heavy like I could before.
What were your first symptoms: Period pain started to last longer each month and I would be exhausted. until one day the pain just never left.
Your age at onset of symptoms: 12
How fast was your rate of decline: From 22-28 it was very gradual. From March 2009 to November 2009 I nose dived. I am worried I will not be able to work much longer.
What are your current symptoms: Pain in hips, pelvis, back, legs, arms and right shoulder. Muscle spasms in hands, feet, pelvis and thighs. Fatigue, blurry vision, left eye is deteriorating fast and feels like it does not track with right eye. Heat intolerance (no more hot showers). Extream Vertigo , dizzy the rest of the time. Headaches on top left side of head. Confusion, short teram memory loss. Saying the wrong words for things, slurred speech, studdering. Right leg drags a bit sometimes, unstable balance. Shortness of breath. Increased sense of smell and weird tastes in my mouth. Increased Thirst and Urination, IBS symptoms, hair loss.
Number of years since you developed symptoms of fibromyalgia: Noticeably for a decade.
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 have made several process to make mine and my teams work easier at my place of employment. I will forget those processes exist. I give blank looks when I am reminded of them and I have to go back and read the training of a process I wrote, implemented and trained the team on. I forget why I go into rooms, I forget my birthday and how old I am. I drive to my old apartment sometimes on the way home even though I have lived at the one I currently reside at for years.
Estimate number of doctors you have seen for Fibro related symptoms: 6
Do your doctors tend to focus on all your Fibro symptoms: Only one looked at everything as being connected the rest refused to do that and tested me for everything under the sun.
Do your doctors treat your symptoms individually or collectively: My current Dr's treat my symptoms collectively and some separate. For example I have additional meds to sleep if i need them, additional meds for the Vertigo etc.
Describe your experience with doctors: Most have been very dismissive of my instance that all of my symptoms were connected. Some were down right cruel to me, in a unprofessional manner. My Dr's now, listen and from the first day made the choice to look at my symptoms as a whole because they respect the fact that I know my body.
What remedies or medications have you tried: Cymbalta Tramadol Clonapin?
What makes you feel better: All of them make me feel better so far. I still have extream symptoms but the pain is lessened enough that I can funtion.
What makes you feel worse: Not taking anything.
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 don't eat a lot of sugar or simple carbs. I eat a lot of fruits and veggies.
Have you tried any thyroid specific treatments: No
Your theories or comments: I have lost 45lbs this year it was hell to do it and even though i will continue to lose weight so I can be healthier it did not improve any of my symptoms.
Are we missing any important questions:

 

01/03/2010
First Name: cindy
Age: 31
Male or Female: female
City: savannah
State/Province: GA
Country: USA
How long have you lived there: most of my life
Where were you born: Senecca, SC
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: art teacher
How has Fibro affected your ability to work: This will be my last year teaching. The stress level at my job is making me worse. My rheumy believes the way I deal with stress plays a major role in my health.
How has Fibro affected your life: I went from being a very active person to being essentially a hermit. I am always too tired to do anything...my children are suffering because I am a single parent and they are having to deal with my illness too.
What were your first symptoms: about two months after a car accident, I was sick with a sinus infection. I experienced neck pain that I thought was swollen glands. It didn't go away for over a year. My sleep was interrupted due to the neck pain. I began to sleep with my arm under my head for support, then I had pain in that elbow and lost range of motion for at least 6 months. I started experiencing brain fog along with these symptoms. I was very tired all day and began to have a difficult time working. My muscles seemed tired all of the time. I noticed an increase in migraine headaches and began to have terrible pre menstrual symptoms and hot flashes.
Your age at onset of symptoms: 29
How fast was your rate of decline: gradual at first, but it got increasingly worse once I was officially diagnosed (i link this to all of the drug therapy with added side effects)
What are your current symptoms: migraine, tmj, trouble sleeping, sore muscles, itchy skin, painful pms, brain fog, moodiness, depression, heat/cold sensitivity, chronic yeast infections and uti's,
Number of years since you developed symptoms of fibromyalgia: 3
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 3
Describe the extent of your brain fog: I forget words when i'm talking, have trouble completing a thought during a conversation, can't remember where I put things, and forget entire conversations.
Estimate number of doctors you have seen for Fibro related symptoms: 8
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: I think I can self diagnose and self medicate better than any doctor has so far.
What remedies or medications have you tried: Lyrica, Cymbalta, Prozac, Phentermine, Trazodone, Cytalopram, Lunesta Provigil/Nuvigil, Savella, Xanax, Vyvanse, Celexa, Wllbutrin, marijuana
What makes you feel better: marijuana, sleep, any type of stimulant to help me work, excedrin migraine for the headaches--I still feel pretty bad even with all of this
What makes you feel worse: Stress! Physical activity, 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: no
Have you tried any thyroid specific treatments: no
Your theories or comments: Drug companies are feeding us drugs that make us think we're getting better while we are actually gradually getting worse with added symptoms that are side effects of the drugs. I think MJ is a good option for treatment of the associated pain but it will never be legalized because drug companies would lose
Are we missing any important questions:

 

01/02/2010
First Name: margaret
Age: 39
Male or Female: fm
City: brisbane
State/Province: queensland
Country: australia
How long have you lived there: 5 years
Where were you born: new zealand
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: chiropractic receptionist
How has Fibro affected your ability to work: yes for 2 years I couldnt work, i am nurse so can not go back to physicaL WORK
How has Fibro affected your life: yes I withdrew had panic attacts, couldnt drive, work or complete simple social tasks
What were your first symptoms: double vision, weakness on side fatigue, aponea, fevers and chills, brain fog, breathlessness gaining of weigt and then quick loss
Your age at onset of symptoms: 35
How fast was your rate of decline: quick good one day then 2 years to feel better
What are your current symptoms: pain in arm joints, back and neck, tiredness and occassionally brain fog
Number of years since you developed symptoms of fibromyalgia: 3
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 3
Describe the extent of your brain fog: feel like i am some where else viosion blurry and side of face name pheriperal vision afected some times
Estimate number of doctors you have seen for Fibro related symptoms: 3
Do your doctors tend to focus on all your Fibro symptoms: does now but tryed beta blockers as heart was tach which didnt help, anti- inflamm which didnt help and a mild anti-depressent which did help
Do your doctors treat your symptoms individually or collectively: individually
Describe your experience with doctors: i felt neurotic as i was there all the times at the start as symptons changes and I felt like i was dying and wanted answers
What remedies or medications have you tried: magnesium anti depressent heat rubs neurofen anti infla multi- vitamins
What makes you feel better: baths neurofen
What makes you feel worse: rain heat
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride: filtered water
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 very interested in doing research of this as it has changed my life and i have many friends in my area that also have it and would like to know the connection
Are we missing any important questions: Have you had epstien barr virus, cytomeglie virus, ross river, what suburb you live in and specialist seen what conclusion have they came to overall and if you have direst family with similar conditions

 

01/02/2010
First Name: Vanessa
Age: 40
Male or Female: female
City: Leefdaal
State/Province: leefdaal
Country: belgium
How long have you lived there: 1 year
Where were you born: england
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: no
What is Your Line of Work: used to be a nurse until 1995yes
How has Fibro affected your ability to work:
How has Fibro affected your life: can no longer work, dance, exercise, do the gardening. Feel ill in vrying degrees all the time. Cannot hod decent conversatins due to the brain fog. Have also now developed other complications such as cpine prolems and hiatus hernia.
What were your first symptoms: chronic fatigue, flu like feelings, swollen glands and aches and pains.
Your age at onset of symptoms: 25
How fast was your rate of decline: quick Within months of the glandular fever.
What are your current symptoms: aches and pains, fatigue, brain fog, digestive problems, muscle weakness.
Number of years since you developed symptoms of fibromyalgia: 15
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 15
Describe the extent of your brain fog: not as bad as it used to be since chelating acording to Andy Cutler Protocol for almost three years.
Estimate number of doctors you have seen for Fibro related symptoms: 5
Do your doctors tend to focus on all your Fibro symptoms:
Do your doctors treat your symptoms individually or collectively:
Describe your experience with doctors: apalling. SOme are sympathetic but powerless to help. Most treat me like it's all in my head and won't support me with any treatments I would like to try. Have had to see private alternative doctors to get any level of understanding.
What remedies or medications have you tried: prozac, magnesium, chelation, thyroid and adrenaol treatment, osteopathy, physiotherapy, relaxation, exercise.
What makes you feel better: Not a lot! Magnesium sulfate baths are comforting at the time.Heat packs.
What makes you feel worse: exercise, stress.
Have you tried avoiding fluoride in your diet: yes, avoid at all costs!
If so, which sources of fluoride: prescription drugs, water, tea, supplements.
Have you made dietary changes to avoid any other neutrotoxins: Yes, try to eat as much organic as possible, avoid sources of mercury when I can, filter or use bottled water, avoid cigarette smoke, avoid alcohol, non toxic toiletries and make up etc.
Have you tried any thyroid specific treatments: Take Naturethroid.
Your theories or comments: I believe that Fibro, CFS etc are all symptoms of a number of problems within the body. A combination of the body's ability to cope with stress being reduced to a point of no return so not enough glutathione etc. Also, mitochondrial dysfunction. Contributory factors: Fluoride and other toxins, poor nutrition in our food, mercury poisoning, lack of ability to excrete toxins, genetic factors, long term stress and infection such as glabndular fever.
Are we missing any important questions: don't think so ;-)

 

01/01/2010
First Name: john
Age: 60
Male or Female: male
City: swindon
State/Province: wiltshire
Country: United Kingdom
How long have you lived there: 25
Where were you born: swindon
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: taxi driving
How has Fibro affected your ability to work: cannot drive far without muscular pain
How has Fibro affected your life: unable to do most things:quality of life reduced by 75% from a year ago
What were your first symptoms: Have had bad,week knees all my life, burns just to go a few steps upstairs. Doing lot of excerise (was in armed forces made no difference to stopping the stiffness)
Your age at onset of symptoms: worst case 58
How fast was your rate of decline: 10% reduction in mobility a year
What are your current symptoms: Daily to varying degrees knawing toothache constant pain mainly in left leg and severe iron rod like cramps in both lower legs after driving for hours. Also unable to lift arms over head, have bad neck, unable to grasp objects in hand or for example teeth for very long.
Number of years since you developed symptoms of fibromyalgia: Since 15 to 1995 guess 40 yrs
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 3
Describe the extent of your brain fog: Sit paralyzed for minutes unable to think or move from seat or perform any simple function,i.e. make a cup of tea, write something. My head always is full of stuff,never ending (maybe because of mental issues) but then can't think of simple task to do or remember if I've taken pills.Worst example is I can think of something,turn around to get pen/paper and its gone.
Estimate number of doctors you have seen for Fibro related symptoms: 8
Do your doctors tend to focus on all your Fibro symptoms: they have no idea what FM and related symptoms are, for example was 20 yrs after every test/camera before they found out the IBS was part of the FM. With current CFS they don't have a clue what to do. One strand that runs through all this over 25 yrs, is they all think its all in the mind and not physical. Currently in such a bad mental state, self harming,not planning ahead for anything.
Do your doctors treat your symptoms individually or collectively: individually when they recognize them
Describe your experience with doctors: totally useless
What remedies or medications have you tried: P/killers--now on Tramadel,pregabalin not working. Anti-depressants- now on duloxitine. Not working as constantly depressed. muddled. Constant bad heads.anadin Muscle spasm-baclafen IBS lot of stuff, goes in 3 wk cycles Constipation, can no go for several weeks,even mini enemas dont work CFS, not allowed to purchase pills from USA, so coenzzme Q10: expensive. Nausia..metoclopramic Anti inflammation..naproxen Throat reflux..omeprazole Restless legs..tabritis..excellent Wee pain..trospium
What makes you feel better: As the FM, IBS and CFS can be different each day guess they only thing that makes me feel better is booze.
What makes you feel worse: Life
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 generally eat sensible balanced diet and makes no difference at all to pain/symptoms. Maybe because of IBS, don't know, but can't go long periods sometimes as short as 90min without having to eat. Cant eat fibre, gives me terrible cramps. Can eat roast meal foe example, then 20 min later have to eat something like biscuit to make pains go away. But can have beans on toast and no pains for hrs. Guess around 3 stone overweight now and increasing.
Have you tried any thyroid specific treatments: none have been suggested to me that will match my symptoms, for example, supposed to go on dairy free diet, but milk soothes my stomach. Told to go on bland diet,but curry will leave me pain free for hours. So docs,nutritionists give up on me.
Your theories or comments: We are not given at outset full medical, blood,wee and everything test, and then medication,diet and so on to match our individual symptoms. It took me 15 years to get official FM test-confirmation.
Are we missing any important questions: What are the reactions/effects of close family friends,docs etc on our condition. They all assume its in he head. Most FMites I know are now single and with few friends.

 

01/01/2010
First Name: AnnaMarie
Age: 40
Male or Female: F
City: Angola
State/Province: IN
Country: USA
How long have you lived there: 40 Years
Where were you born: Indiana
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: Permanently disabled/Mother
How has Fibro affected your ability to work: I was an accountant for 15 years. After getting Fibro I was permanently disabled. I am not allowed nor able to hold a job.
How has Fibro affected your life: I had to relearn everything in life such as filling a laundry basket 1/2 full instead of full. It took 5 years or more for me to retrain myself. It hasn't been easy. I've had to give up Bowling and many other activities because I am not physically able to do them any more.
What were your first symptoms: It felt like something was eating my muscles. Migraines and Insomnia.
Your age at onset of symptoms: 26
How fast was your rate of decline: 18 months before they put it all together and said Fibromyalgia.
What are your current symptoms: Mucsle pain mostly in my wrists, elbows, shoulders, neck and knees. Usually triggered by weather changes and stress. Migraines 3-10 days a month. Osteoporisis, bursitis, arthritis, ulcers, kidney stones.
Number of years since you developed symptoms of fibromyalgia: 15 years
Do your symptoms include brain fog: Yes
Number of years since you developed the brain fog: 15
Describe the extent of your brain fog: I used to have a photographic memory. I now need to write myself notes and zone out in a fog often.
Estimate number of doctors you have seen for Fibro related symptoms: 6
Do your doctors tend to focus on all your Fibro symptoms: Doctors tended to treat me like I had mental problems until I found one particular doctor that focused on my Fibro and the causes of my symptoms and not the symptoms themself. I lost that doctor 3 years ago.
Do your doctors treat your symptoms individually or collectively: My doctor was treating the cause of the symptoms, which was stemming mostly from insomnia. Some of the other things that came along after the Fibro are treated individually.
Describe your experience with doctors: I've had horrible experiences with doctors. One in particular said he had Fibro and no one had it worse than he did. He was the worst of the worst. I had to actually go to the Cleveland Clinic to get real help for it all. The doctor I had there was wonderful and was able to explain it to my husband so he could understand what was wrong with me. I lost that doctor 3 years ago and haven't went to another doctor as of yet. I treat my Fibro now on my own. I will eventually have to find a new doctor.
What remedies or medications have you tried: Flexeril, Darvocet, Dalmane, Celebrex, doxipin, shots for the bursitis and a ton of other muscle relaxers and arthritis meds.
What makes you feel better: Sleep
What makes you feel worse: Stress and lack of real sleep
Have you tried avoiding fluoride in your diet: No, but I intend to start
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, don't have thyroid problems, I'm borderline so they aren't treating it yet.
Your theories or comments: When I was diagnosed there were maybe at the most 2 pages on Fibromyalgia. 15 years later there are so many that you don't know who to believe and what really works and don't like being a doctors guinea pig. I love this site and was surprised to read about Floride being a factor I never would have thought it. I am going to try switching toothpastes and avoiding floride and see if there is any improvement.
Are we missing any important questions: Not that I can think of.

 

 

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