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Fibromyalgia Questionnaire & Results

Latest Update: 11/19/2009 

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35 QUESTIONNAIRE COMPLETED DATA FORMS FOR September 2009

09/30/2009
First Name: Debra
Age: 51
Male or Female: female
City: Birmingham
State/Province: AL
Country: USA
How long have you lived there: all my life
Where were you born: Birmingham
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: no
What is Your Line of Work: I was in insurance sales.
How has Fibro affected your ability to work: I have been unable to work for 6 years and am on Social Security Disability.
How has Fibro affected your life: What life?! I simply exist. I don't feel like doing anything.
What were your first symptoms: Swelling and pain in my fingers and hands
Your age at onset of symptoms: 45
How fast was your rate of decline: About 6 months from initial diagnosis/onset of symptoms I was unable to continue working
What are your current symptoms: Debilitating overall body pain/aches, specific trigger points in upper back, upper chest, hips, knees, elbows, lower back. Depression. Fatigue. Inability to sleep. Unable to remember. IBS.
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 years, right from the beginning
Describe the extent of your brain fog: Difficulty remembering, inability to call up words, in mid-sentence will forget what I'm talking about. Short term memory loss.
Estimate number of doctors you have seen for Fibro related symptoms: At least 8
Do your doctors tend to focus on all your Fibro symptoms: No, not really
Do your doctors treat your symptoms individually or collectively: Inividually
Describe your experience with doctors: Incredibly frustrating. I've yet to find one that I feel is really addressing the problems. However, I've just seen a new Rheumatologist who may be helpful, will just have to wait and see.
What remedies or medications have you tried: Numerous prescriptions - anti-depressants, pain meds, muscle relaxers, nsaids, topical lotions and creams
What makes you feel better: I can't really say anything makes me feel better. However, I do go to a heated pool for therapy and this does feel good. Soaking in a hot bath with Epsom Salts also helps some. Topically I use Arnica gel on muscular pain areas.
What makes you feel worse: Lack of sleep really makes me feel worse. Stress is also a trigger. Changes in weather, rain and storms. Plus cold weather really throws me for a loop. Winter is my least favorite season.
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 wish there was more research, especially into the cause of FMS. I believe my having a hysterectomy and complications associated with it, is when my problems began. I believe the physical stress to my body is the underlying cause. Also, I would like to see the health care industry take FMS and it's sufferers seriously. IT IS NOT IN OUR IMAGINATION! If it were that simple, I would simply imagine that I felt fantastic!
Are we missing any important questions: None that I can think of.

 

09/30/2009
First Name: Joanne
Age: 62
Male or Female: Female
City: Mancos
State/Province: CO
Country: United States
How long have you lived there: 3 years
Where were you born: Spokane, WA
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: no
What is Your Line of Work: Herbalist, subsitute teacher.
How has Fibro affected your ability to work: My physical endurance is very low, as well as painful joints. If I work too much, I develop a lot of pain and muscle cramps.
How has Fibro affected your life: It's limited my activities a lot; I used to be much more active, swimming, hiking. I now don't sleep well and never feel rested.
What were your first symptoms: Deep fatigue and very painful swollen knees and feet.
Your age at onset of symptoms: 59
How fast was your rate of decline: a few months
What are your current symptoms: Low energy, painful joints and muscles, poor sleep with lots of waking
Number of years since you developed symptoms of fibromyalgia: 2 1/2
Do your symptoms include brain fog: no
Number of years since you developed the brain fog:
Describe the extent of your brain fog:
Estimate number of doctors you have seen for Fibro related symptoms: 2
Do your doctors tend to focus on all your Fibro symptoms: No
Do your doctors treat your symptoms individually or collectively: They seem to understand hypthyroid problems to some extents, but not fibro. Most doctors don't really understand even the depth of hypothyroid problems.
Describe your experience with doctors: Very difficult to find a doctor who will treat hypothyroidism with natural thyroid. Their general lack of knowledge about fibro and thyroid conditions is discouraging. I do my own research so I really am able to understand what is going on with my body.
What remedies or medications have you tried: OTC pain relievers, nutritional supplements, herbal supplements, heat and cold applications.
What makes you feel better: Magnesium with malic acid. Vinegar. Sea salt. 5-HTP for sleep. Armour thyroid helps but due to adrenal problems I am not taking enough to really feel better. Walking helps. Vitamin D and/or sunshine!
What makes you feel worse: Not exercising, eating poorly-too much sugar, gluten products, pastuerized dairy. Tryng to do too much.
Have you tried avoiding fluoride in your diet: yes
If so, which sources of fluoride: Water, toothpaste. Also avoiding bromine, in wheat flour, soft drinks etc. and chlorine in water, swimming pools.
Have you made dietary changes to avoid any other neutrotoxins: A gluten free diet has helped a lot. I eat natural foods.
Have you tried any thyroid specific treatments: I've used Armour thyroid for 2 1/2 years but have discovered I have to correct low functioning adrenals in order to be able to take the amount of Armour needed to really treat fibro/hypo symptoms.
Your theories or comments: I've very much appreciated the work of Dr. John Lowe about thyroid and fibromyalgia. His research shows a clear connection, and also a way to treat both.
Are we missing any important questions:

 

09/29/2009
First Name: Liz
Age: 28
Male or Female: Female
City: Lakeville
State/Province: Minnesota
Country: USA
How long have you lived there: 1 yr.
Where were you born: Eagan, MN
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: internet marketing
How has Fibro affected your ability to work: It makes it almost impossible just to sit through work, focus and be productive
How has Fibro affected your life: horribly. Every single day is a struggle
What were your first symptoms: extreme fatigue, body/muscle aches
Your age at onset of symptoms: 27
How fast was your rate of decline:
What are your current symptoms: brain fog, muscle pain, fatigue
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: it is hard to focus on work, I feel as if Im in a "dream" and not myself
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: collectively
Describe your experience with doctors: not very good, they don't really know what to do
What remedies or medications have you tried:
What makes you feel better: nothing
What makes you feel worse:
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: tried avioding sugar and processed foods, yeast and wheats
Have you tried any thyroid specific treatments: no
Your theories or comments: I believe I could have Candida as all of this happened after an extended treatment of 9 antibiotics over 8 months.
Are we missing any important questions:

 

09/28/2009
First Name: fran
Age: 32
Male or Female: female
City: avondale
State/Province: az
Country: US
How long have you lived there: 32
Where were you born: arizona
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: no
What is Your Line of Work: I worked at a grocery store(deli)
How has Fibro affected your ability to work: I can;t stand to long or lift up my arms to long they get heavy and tired, my feet also go numb.
How has Fibro affected your life: I can't grocery shop to long and i can;t work. I also can't go to school because i get tired. I also can;t lay in bed because of the stiffness. I was going to college but my sickness stopped me from everything. My weight also went crazy. In one year i gained 40 pds.
What were your first symptoms: My first symtom felt like i got into a car wreck, when i never been in an acciedent. However i would say the stiffness is pretty bad.
Your age at onset of symptoms: 25
How fast was your rate of decline: pretty fast
What are your current symptoms: swelling of feet, severe stiffness, tiredness, constipation, can;t stand at all.
Number of years since you developed symptoms of fibromyalgia: 8yrs
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 8
Describe the extent of your brain fog: spacey
Estimate number of doctors you have seen for Fibro related symptoms: 5
Do your doctors tend to focus on all your Fibro symptoms: no they don;t and they don';t care.
Do your doctors treat your symptoms individually or collectively: i imagine collectively
Describe your experience with doctors: all they do is run test and tell me i don;t have anything and tell me to go away.
What remedies or medications have you tried: anti infalmatroy meds, and herbal teas. Rose hips and multivitamin. Tried to change diet.
What makes you feel better: nothing has worked.
What makes you feel worse: when season change it makes it worse or when i don;t get enough sleep.
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: fruits and veg. diet and didn;'t work and i never lost any weight.
Have you tried any thyroid specific treatments: none test came up negative, but i do have swollen glands which is odd.
Your theories or comments: none except i now also have depression to go with it.
Are we missing any important questions: no

 

09/28/2009
First Name: Jana
Age: 22
Male or Female: Female
City: Orem
State/Province: UT
Country: USA
How long have you lived there: 8 years
Where were you born: Misawa, Japan
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 in retail at a women's clothing store in our mall. I'm on my feet sometimes 4-6 hours a day just once a week.
How has Fibro affected your ability to work: I have a lot of pain after a while because I can't sit down and rest. I have to carry heavy loads and I get sore quickly. I have to work shorter shifts less frequently.
How has Fibro affected your life: I can't work out much due to the pain and breathing problems. I have bladder problems that cause frequent urgency to urinate and I leak urine. I get fatigued much quicker than most people do. I have a hard time falling asleep at night and wake up very stiff in the morning, adding to my lack of work out time.
What were your first symptoms: Muscle, tendon, ligament, and joint pain and weakness. Fatigue.
Your age at onset of symptoms: 15
How fast was your rate of decline: It was pretty quick, but got the worst once I hit about age 20.
What are your current symptoms: Vision problems, frequent headaches, muscle weakness and pain, joint pain, tendonitis, breathing problems, bladder and urinary problems.
Number of years since you developed symptoms of fibromyalgia: 7
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, they write it off as something unimportant. I get an Ibuprofen prescription and am told to come back if it doesn't help.
Do your doctors treat your symptoms individually or collectively: Individually.
Describe your experience with doctors: I have not found one who really knew what he was talking about.
What remedies or medications have you tried: Nothing.
What makes you feel better: Exercise and sun exposure.
What makes you feel worse: Staying up too late, getting too tired, not eating healthy, stress.
Have you tried avoiding fluoride in your diet: Yes
If so, which sources of fluoride: Tap water.
Have you made dietary changes to avoid any other neutrotoxins: No.
Have you tried any thyroid specific treatments: No.
Your theories or comments:
Are we missing any important questions:

 

09/28/2009
First Name: Ethel
Age: 64
Male or Female: Female
City: Aberdeen
State/Province: SD
Country: USA
How long have you lived there: 3 Months
Where were you born: Houston, 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: Medical, Pschy-tech, food Service, Retail Sales, Baby sitting, Truck driving, etc.
How has Fibro affected your ability to work: Fatigue, Difficult to concentrate, pain, Stiffness. I am unable to stick to anything for more than 15 or 20 minutes, which makes it difficult to accomplish a task
How has Fibro affected your life: Because people cannot see a crutch or wheelchair, they cannot understand or except it when I say I cannot do something or even I do not feel well. Acute sensitivity to high pitch, and loud noises, berametric pressure,and humidity.I am a people person, but activities with groups of people intensify pain level and fatigue. On the other other hand not being to be around people causes depression. This causes a lot of stress and stress makes me tired and generally grumpy.
What were your first symptoms: undiscribbable all over body pain, sensitivity to touch and fatigue.
Your age at onset of symptoms: 42
How fast was your rate of decline: Very quickly and I had it 5 years before I was diagnosed. By that time the vibrations of another passing body sent me into hysterics.
What are your current symptoms: low pain level 12 98 percent of the time, high pain hysterics. Fatigue, stiffnes depression, and brain fog
Number of years since you developed symptoms of fibromyalgia: 20
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 10
Describe the extent of your brain fog: I attributed to too much drugs. Sometimes I can not deliver verbally simple everyday sentences. I also have some difficulty assemilating when conversing.
Estimate number of doctors you have seen for Fibro related symptoms: Only 1 specialist and all he did was diagnos me. Otherwise a family practioner has maintain the original treatment and sdded 2 more medications
Do your doctors tend to focus on all your Fibro symptoms: Exactly. This is why I am on so many drugs
Do your doctors treat your symptoms individually or collectively: Individually
Describe your experience with doctors: They do not seem to know much about the condition so they only treat symtoms.
What remedies or medications have you tried: I have not tried any unprescribed medicines. I did participate in a 10 week pain management class. There I learned to listen to my body. To detect an on coming flare. To use music and breathing to relax my muscles. Take sugar and caffiene out of diet.
What makes you feel better: Sleeping if I can get there and stay there for four or more hours.
What makes you feel worse: Stress, noise, sugar, and fatigue.
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: The only ones I know, sugar and caffiene.
Have you tried any thyroid specific treatments: no
Your theories or comments: I have a new family and they are very much into homeopathic healing. so I am looking for this kind of help now. At the beginning it said this would take 10 minutes. I took me 3 hours. This is part of my symtoms.
Are we missing any important questions: You did not ask any questions about rest or lack of. I find rest to be my best ally.

 

09/26/2009
First Name: Ang
Age: 56
Male or Female: female
City: Jackson
State/Province: Michigan
Country: USA
How long have you lived there: 26 years
Where were you born: Cairo, 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: was in hotel mgt.
How has Fibro affected your ability to work: retired
How has Fibro affected your life: quality of life has been affected in adverse way
What were your first symptoms: -extreme pain neck, shoulders, back
Your age at onset of symptoms: 50
How fast was your rate of decline: continual
What are your current symptoms: very painful, but press on
Number of years since you developed symptoms of fibromyalgia: 7 years
Do your symptoms include brain fog: could be from aneurysm
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: 1
Do your doctors tend to focus on all your Fibro symptoms: not really
Do your doctors treat your symptoms individually or collectively: not really
Describe your experience with doctors: focus mostly on diabetes
What remedies or medications have you tried: aleve
What makes you feel better: aleve
What makes you feel worse: caffene
Have you tried avoiding fluoride in your diet: yes
If so, which sources of fluoride: toothpaste, cipro
Have you made dietary changes to avoid any other neutrotoxins: yes
Have you tried any thyroid specific treatments: no
Your theories or comments:
Are we missing any important questions:

 

09/26/2009
First Name: angela
Age: 47
Male or Female: female
City: sunderland
State/Province: tyne wear
Country: uk
How long have you lived there: 47yrs
Where were you born: sunderland
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: pain tiredness brain fog stiffness inability to focus inability to stand or sit for any length of time
How has Fibro affected your life: it has isolated me. it causes depression. i cant enjoy the things i used to
What were your first symptoms: my wrists swelled up. i thought i had arthritis as they were very sore and stiff
Your age at onset of symptoms: 29
How fast was your rate of decline: very fast. the symptoms spread within three months
What are your current symptoms: a little stiffness and soreness but nothing like as bad as previously
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: 18
Describe the extent of your brain fog: cannot focus forgetful feel hungover
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: a waste of time
What remedies or medications have you tried: all forms of allopathic prescribed.
What makes you feel better: cutting fluoride out of my water supply.yoga helps to relieve inflammation
What makes you feel worse: stress
Have you tried avoiding fluoride in your diet: yes
If so, which sources of fluoride: tap water drugs
Have you made dietary changes to avoid any other neutrotoxins: i stick to natural and healthy whereever possible
Have you tried any thyroid specific treatments: no
Your theories or comments: i think my illness was largly caused by fluoride .
Are we missing any important questions:

 

09/25/2009
First Name: Patricia
Age: 62
Male or Female: female
City: Lede
State/Province: East Flanders
Country: Belgium
How long have you lived there: 34
Where were you born: Wilmington, Delaware USA
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: in retirement musician
What is Your Line of Work: jack of all trades, musician housework, painting, gardening, teaching, musician
How has Fibro affected your ability to work: if I don't have to stand or walk alot, I can still work as hard as before. More somztimes.
How has Fibro affected your life: Mornings are foggy. It's hard to keep up with my husband and friends.
What were your first symptoms: fatigue years ago. About 3 years ago till now,I have had problems to stand up straight immediately. After about 3 to 5 minutes I'm OK. Knee and right hip problems. Should probably have replacements.
Your age at onset of symptoms: +- 52 years old
How fast was your rate of decline: about over a 10 year period
What are your current symptoms: sensitivity in shin bones, and inside of right knee, overall body stiffness, back muscles, in the middle can be very stiff.
Number of years since you developed symptoms of fibromyalgia: about 10 years
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: in the mornings since I was 30
Describe the extent of your brain fog: can't concentrate well or tackle mental tasks effectively; Still function though.
Estimate number of doctors you have seen for Fibro related symptoms: none, but have mentioned it with not much response
Do your doctors tend to focus on all your Fibro symptoms: I have never been treated for Fibro.
Do your doctors treat your symptoms individually or collectively: see above
Describe your experience with doctors: not very positive. I've had two times in my life operations digagnosed that were not necessary. Fortunately there are also very correct and professional doctors who saw this. In general, however I don't trust them.
What remedies or medications have you tried: Apple cider vinegar exercises, fish oil capsules, some spices, etc.
What makes you feel better: the above and eating properly; very little sugar and carbs
What makes you feel worse: really overeating and overworking
Have you tried avoiding fluoride in your diet: not really ,n o
If so, which sources of fluoride: try to buy toothpaste without
Have you made dietary changes to avoid any other neutrotoxins: no
Have you tried any thyroid specific treatments: coconut oil would like to try taking tyrosine(not sure of spelling)
Your theories or comments: I still finction, but I would like to be stiffness free and be able to walk again. I think that is called old age!!
Are we missing any important questions: I don't think so, I don't know. I do know that how I've been able to cope and it's not pleasant is sheer self discipline. I won't give in,at least not right now. I don't take any pain stillers. Maybe that will come.

 

09/25/2009
First Name: Shannon
Age: 29
Male or Female: Female
City: Brockton
State/Province: Ma
Country: USA
How long have you lived there: 29 years
Where were you born: Boston, Ma
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: Paralegal
How has Fibro affected your ability to work: Yes
How has Fibro affected your life: Yes
What were your first symptoms: numbness & tingling in legs, severe pain in legs, migranes
Your age at onset of symptoms: 16-17
How fast was your rate of decline: It has gotten worse over the last 5 years
What are your current symptoms: extreme fatigue, Pain in neck and back, same pain in legs making it difficult to even walk(I walk like I am 80 years old). Dizziness, nausea, balance issues, hands hurt after typing all day
Number of years since you developed symptoms of fibromyalgia: 10+
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 2
Describe the extent of your brain fog: I cannot remember conversations that I have. I think I am doing well on a file and next thing I know someone is pointing out a big mistake. My numbers are getting inverted.
Estimate number of doctors you have seen for Fibro related symptoms: 10
Do your doctors tend to focus on all your Fibro symptoms: No
Do your doctors treat your symptoms individually or collectively: Collectively
Describe your experience with doctors: Most think nothing is wrong because all my tests come back normal. The only thing that has my neurologist concerned is I have dymelineation on my brain scans
What remedies or medications have you tried: Cymbalta, Amitriplyine, Savella, Gabapentin, Physical Therapy, Tramadol
What makes you feel better: Tramadol, Sleep
What makes you feel worse: Lack of Sleep, Stress at work
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride: prescription drugs
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:

 

09/24/2009
First Name: Terri
Age: 42
Male or Female: Female
City: Waterloo
State/Province: Iowa
Country: USA
How long have you lived there: 42 Years
Where were you born: Waterloo, Iowa
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: No
What is Your Line of Work: I am a Licensed Practical Nurse
How has Fibro affected your ability to work: I was so preoccupied with the pain that I found it difficult to concentrate on work, or I would call in frequently.
How has Fibro affected your life: Fibromyalgia has stripped me of a social life, work, and just being able to manage the activities of daily living. I am depressed and have anxiety attacks.
What were your first symptoms: Severe fatigue and joint pain. First signs were about 10 years ago.
Your age at onset of symptoms: 32
How fast was your rate of decline: It was progressive. I would go through long periods in the beginning without experiencing pain and fatigue. I could go up to 2-3 months sometimes without symptoms. The last 2 years have been extremely debilitating with the pain and mental stress.
What are your current symptoms: Fatigue Joint pain muscle pain and spasms(especially between the shoulder blades) Difficulty focusing on tasks anxiety attacks depression
Number of years since you developed symptoms of fibromyalgia: Roughly 10 years.
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 10
Describe the extent of your brain fog: Sometimes. at least monthly, I could be doing a task and completely forget what I am doing. I constantly misplace items even if I just had them minutes before. It can be very scary
Estimate number of doctors you have seen for Fibro related symptoms: 1 I dont have insurance
Do your doctors tend to focus on all your Fibro symptoms: No, she focuses on the mental side only.
Do your doctors treat your symptoms individually or collectively: collectively.
Describe your experience with doctors: She tends to want to keep prescribing anti depressants. I already take 2 kinds. She doesnt want to treat the pain.
What remedies or medications have you tried: Lyrica and a few other anti depressants I dont remember the names
What makes you feel better: Vicodin but it only lasts a few hours
What makes you feel worse: activity
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: I have such bad stomache issues that I avoid red meat when I can and msg
Have you tried any thyroid specific treatments: no
Your theories or comments: I believe that Fibromyalgia is frequently looked at as "It's all in your head" syndrome. Many times we are looked at as hypocondriacs and not taken seriously or they just want to treat our mental situation.
Are we missing any important questions: no

 

09/24/2009
First Name: Lea
Age: 55
Male or Female: female
City: Oklahoma City
State/Province: ok
Country: usa
How long have you lived there: 55
Where were you born: cushing, ok
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: customer service rep/ins agent
How has Fibro affected your ability to work: Tired, can't remember, aches & pains which makes it hard to concentrate
How has Fibro affected your life: unable to to the things i used to because I have gained weight with fibro- too tired
What were your first symptoms: aches & pains with no reason
Your age at onset of symptoms: 48
How fast was your rate of decline: i would say slower than some as I try to experiment with different supplements to help me cope
What are your current symptoms: fatigue, headaches, aches all over, weight gain, pain in hands, brain fog
Number of years since you developed symptoms of fibromyalgia: 7 or 8
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 4
Describe the extent of your brain fog: trying to remember details of something i am working on or a conversation in the past with someone.
Estimate number of doctors you have seen for Fibro related symptoms: 1
Do your doctors tend to focus on all your Fibro symptoms: not really
Do your doctors treat your symptoms individually or collectively: individually
Describe your experience with doctors: I have only been to my MD no specialist. My current DR took over prev Dr who left & he just continues on based on past chart
What remedies or medications have you tried: tramadol, magneisum(sp) malic acid, vit D, Vit E fish oil,
What makes you feel better: depends on the weather & stress of the time. Usually all the above tend to help but if the weather is cold or really wet it seems nothing helps much
What makes you feel worse: stress in my life & 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: Do not know
Have you tried any thyroid specific treatments: yes Dr put me on Thyroid medicine once because of my weight gain
Your theories or comments: I feel more research & attention should be given to this disease. Most Dr's tend to make you feel like it is all in your head & it is not
Are we missing any important questions: Perhaps asking how a person sleeps at night. That is another problem i have. can't seem to get a good sleep which could help heal

 

09/24/2009
First Name: Elizabeth
Age: 47
Male or Female: f
City: Miami
State/Province: Fl
Country: United States
How long have you lived there: 25
Where were you born: PR
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: QA
How has Fibro affected your ability to work: yes
How has Fibro affected your life: 24/7 pain, tired, upset, depressed
What were your first symptoms: muscle twitching (fasciculations) and muscle pain, insomnia
Your age at onset of symptoms: 32
How fast was your rate of decline: immedeate
What are your current symptoms: same, but stronger
Number of years since you developed symptoms of fibromyalgia: 15
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: 8
Do your doctors tend to focus on all your Fibro symptoms: only on spots
Do your doctors treat your symptoms individually or collectively: individually
Describe your experience with doctors: frustrating
What remedies or medications have you tried: ultram, flexeril, prozac, viox, celebrex, tizanidine, lyrica, requip
What makes you feel better: celebrex combined with tizanidine, hot showers and stretching
What makes you feel worse: all the other medications, cold temperatures, been in one position for too long.
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: yes
Have you tried any thyroid specific treatments: no
Your theories or comments: nobody really knows and I am one more experiment.
Are we missing any important questions:

 

09/23/2009
First Name: Dionne
Age: 36
Male or Female: Female
City: Perth
State/Province: 6065
Country: Australia
How long have you lived there: 36 years
Where were you born: Perth
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: Doula, Birth support person
How has Fibro affected your ability to work: Not able to support as many women. In bed for 3-4 days after.
How has Fibro affected your life: Not able to play and take children out the park. To sore and tired to do housework etc
What were your first symptoms: Sore body everywere.
Your age at onset of symptoms: 21
How fast was your rate of decline: Within weeks of having pain
What are your current symptoms: Sore body, tired, cant think straight sometimes, forget words when speaking. hurts to breath,
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: 2
Describe the extent of your brain fog: cant remember words when talking to others. forget what people are talking about. Cant consertrate on reading
Estimate number of doctors you have seen for Fibro related symptoms: 5
Do your doctors tend to focus on all your Fibro symptoms: no, just the pain.
Do your doctors treat your symptoms individually or collectively: individually
Describe your experience with doctors: most dont believe in it. thoes that do just want to give you pain killers
What remedies or medications have you tried: Morfine, anti inflamitarys.Apple cider vinigar
What makes you feel better: Apple cider vinigar
What makes you feel worse: Morfine
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: gluten
Have you tried any thyroid specific treatments: no
Your theories or comments: I have found that i have an attack that lasts aprox 2-3years after i have given birth.
Are we missing any important questions:

 

09/22/2009
First Name: Vickie
Age: 56
Male or Female: Female
City: Saint Augustine
State/Province: FL
Country: USA
How long have you lived there: lifetime
Where were you born: Jacksonville, 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: Police Dispatcher
How has Fibro affected your ability to work: Could not sit long enough to work a whole shift plus the stress made the pain of the Fibro worse.
How has Fibro affected your life: In every conceivable way! I can't work, have become sedentary, just made everything harder to do!
What were your first symptoms: Pain in lower back radiating all the way to feet. Chronic fatigue severe!
Your age at onset of symptoms: 38
How fast was your rate of decline: moderate to start, then rapid after rear end auto accident in 1996
What are your current symptoms: Can't sit nor stand very long, pain everywhere now. Effects everything I do. Severe sleep deprivation!
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: 14
Describe the extent of your brain fog: Can't stay on topic when talking to someone, can't remember words I have used my whole life when speaking or writing, go into a room & forget why I came there
Estimate number of doctors you have seen for Fibro related symptoms: 15 to 20
Do your doctors tend to focus on all your Fibro symptoms: My primary care does now & so does my pain management doctor
Do your doctors treat your symptoms individually or collectively: Mostly collectively unless a particular symptom is really being painful
Describe your experience with doctors: Most thought I was drug seeking or a hypochondriac. Primary care doctor now is extremely understanding and bends over backwards to help me. May be because he is my brother's best friend!
What remedies or medications have you tried: Just about every treatment I have read about that my doctor thought was safe.
What makes you feel better: Best thing is my sleep number bed! Got it 2 1/2 years ago and love it! Also, pain mgemnt dr. finally got meds right, Avinza, with Percocet for breakthrough pain and that has made my life much more tolerable.
What makes you feel worse: The weather, doing things I know will make me worse but I chose to do them anyway because they usually involve my grandsons and I'm willing to pay the price of having to stay in bed or hurt worse for a few days to be with or do something with them.
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:

 

09/22/2009
First Name: mary
Age: 61
Male or Female: female
City: nocatee
State/Province: florida
Country: america
How long have you lived there: at this address about a year
Where were you born: brunswick maine
Is this the first time you have taken our questionnaire: yes
If not, why are you returning: i dont believe we are working hard enough to stop fluoride.it should be all over the news not hidden.this is about my children.
Are you still working: my daughter and my son can barely walk let alone work
What is Your Line of Work: my children and myself have always been hard workers.
How has Fibro affected your ability to work: neuropothy/myopothy etc.etc.
How has Fibro affected your life: all drs.do is drug you up or say they dont believe you.
What were your first symptoms: my daughters have fibro/high bllood pressure/thyroid problems.my son has diabetes.
Your age at onset of symptoms:
How fast was your rate of decline: brain fog
What are your current symptoms: weight gain
Number of years since you developed symptoms of fibromyalgia: etc.etc.etc.
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: we all probably have some form of brain fog on fluoride
Describe the extent of your brain fog: etc.etc.etc.
Estimate number of doctors you have seen for Fibro related symptoms: etc.
Do your doctors tend to focus on all your Fibro symptoms: pros and cons
Do your doctors treat your symptoms individually or collectively: pros and cons
Describe your experience with doctors: not promising
What remedies or medications have you tried: thyroid/synthroid/diabetic/insulin/my fibro daughte has been on several drugs.
What makes you feel better: pros and cons
What makes you feel worse: pros and cons
Have you tried avoiding fluoride in your diet: yes
If so, which sources of fluoride: i have told all my children about harm from fluoride.it is almost impossible to avoid.it is in every thing even organic.
Have you made dietary changes to avoid any other neutrotoxins: maybe you can advise me how to avoid toxins.
Have you tried any thyroid specific treatments: my daughte is on synthroid.
Your theories or comments: stop fluoride
Are we missing any important questions: we need to get this info about harm from fluoride to the unsuspecting people

 

09/22/2009
First Name: Jane
Age: 62
Male or Female: Female
City: Summersville
State/Province: WV
Country: USA
How long have you lived there: 3 years
Where were you born: Pontiac, Michigan
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: caregiver
How has Fibro affected your ability to work: no. I'm retired
How has Fibro affected your life: somewhat
What were your first symptoms: pain
Your age at onset of symptoms: 55
How fast was your rate of decline: unable to tell due to graves
What are your current symptoms: pain, weakness
Number of years since you developed symptoms of fibromyalgia: 4
Do your symptoms include brain fog: due to drugs yes
Number of years since you developed the brain fog: 3
Describe the extent of your brain fog: advanced
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: the one who diagnosed was terrific. She was for a specific disease. can't remember what. rheumatoid arthritis type
What remedies or medications have you tried: lyrica
What makes you feel better: lyrica and rest, slow exercise, lots of water
What makes you feel worse: too much exercise, too much noise, too much heat
Have you tried avoiding fluoride in your diet: yes
If so, which sources of fluoride: I don't drink fluoride water, i only recently began using it again in toothpaste. Avoided it completely for the past 10 years
Have you made dietary changes to avoid any other neutrotoxins: not a clue what it may be in
Have you tried any thyroid specific treatments: I have graves & had it radiated 10 years ago. Am on a thyroid pill since then. Recently the TSH has begun climbing again. My eyes have begun crossing again, too.
Your theories or comments: none. I've not a clue
Are we missing any important questions: None I can think of. I'm wondering why you don't want my email. Or some method of contact.

 

09/22/2009
First Name: suzy
Age: 43
Male or Female: female
City: bangor
State/Province: co down
Country: northern ireland
How long have you lived there: 43 years
Where were you born: dundonald belfast
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: no
What is Your Line of Work:
How has Fibro affected your ability to work: yes very much so
How has Fibro affected your life: in all aspects off daily living, mobility, depression, anxiety, insomnia, widespread pain, concentration, memory,
What were your first symptoms: aches and pains throughout my body
Your age at onset of symptoms: 40
How fast was your rate of decline: very fast
What are your current symptoms: all over body pain
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: 4years
Describe the extent of your brain fog: lack off concentration, memory, reading things over and over again
Estimate number of doctors you have seen for Fibro related symptoms: to many
Do your doctors tend to focus on all your Fibro symptoms: no
Do your doctors treat your symptoms individually or collectively: neither
Describe your experience with doctors: just changed doctors after 42years as i felt my doc was not taking me seriously
What remedies or medications have you tried: homepathic, herbal , prescriptive drugs, remedys on net, chinese remedies, physio,
What makes you feel better: nothing
What makes you feel worse: lack off sleep and pain
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:

 

09/21/2009
First Name: yvette
Age: 31
Male or Female: female
City: san rafael
State/Province: ca
Country: united states
How long have you lived there: 3 years
Where were you born: Merced
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: clerical
How has Fibro affected your ability to work: yes
How has Fibro affected your life: social
What were your first symptoms: pain
Your age at onset of symptoms: 22
How fast was your rate of decline: very quickly
What are your current symptoms: pain, fatigue, loss of concentration, depression
Number of years since you developed symptoms of fibromyalgia: 9
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 4
Describe the extent of your brain fog: forget things, can't remember if I've done something etc.
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: not the greatest.
What remedies or medications have you tried: anti-depressants, pain medication.
What makes you feel better: sometimes pain medication, need a lot of rest
What makes you feel worse: change of temperature, exhertion,
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: not really
Have you tried any thyroid specific treatments: no
Your theories or comments:
Are we missing any important questions:

 

09/21/2009
First Name: julie
Age: 41
Male or Female: female
City: Banstead
State/Province: Surrey
Country: uk
How long have you lived there: 41 years
Where were you born: uk
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: yes
What is Your Line of Work: cleaning
How has Fibro affected your ability to work: find it extremely painful, tiring & usetting
How has Fibro affected your life: ditto!
What were your first symptoms: Ear & rib pain
Your age at onset of symptoms: 22
How fast was your rate of decline: slow, general pains on & off. Fainting hypoglaemic episodes. Only had constant pain last 3 years & fatigue/fog 1 year
What are your current symptoms: Widespread pain acute & chronic, morning stiffness, brain fog, memory loss, burning, tingling, itchy, sensitive cold skin (different times different places).Low mood. Sleep problems.
Number of years since you developed symptoms of fibromyalgia: 20
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: varies. Some days can't string a sentence together or tie my laces. Other days reletively OK
Estimate number of doctors you have seen for Fibro related symptoms: 12
Do your doctors tend to focus on all your Fibro symptoms: only had 4 visits re fibro. Previous were individual symptoms not detected as FMS. NO, has just put me on a trptyline to see if aids sleep.
Do your doctors treat your symptoms individually or collectively: collectively
Describe your experience with doctors: Not great
What remedies or medications have you tried: amitriptyline
What makes you feel better: Not worked that out yet, only had diognise month ago. Just luck some days.
What makes you feel worse: Exursion. Stress.
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: stopped drinking diet coke 2 weeks ago. No improvement tho
Have you tried any thyroid specific treatments: no
Your theories or comments:
Are we missing any important questions:

 

09/21/2009
First Name: Sabra
Age: 78
Male or Female: female
City: Lexington
State/Province: MA
Country: United States
How long have you lived there: since 1962
Where were you born: Pittsburgh, PA
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: independent journalist
How has Fibro affected your ability to work: Not hugely, since at my age I'm able to choose what I want to write about, and usually I can adapt my schedule around the dratted fatigue,
How has Fibro affected your life: Fatigue! is worse than fog. I'm tired after walking just a mile-but that inability has NOT increased over the years.
What were your first symptoms: joint pains fatigue
Your age at onset of symptoms: 27!!
How fast was your rate of decline: I really have not declined very much, over all these years-partly because I pursue some "cures," such as magnesium...
What are your current symptoms: Fatigue is ever-present. Insomnia is bad! Pain is manageable.
Number of years since you developed symptoms of fibromyalgia: 51! (Of course it had no diagnosis then. I got all sorts of nastiness from MD's-"Go home and do the Royal Canadian Air Force Exercises."
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: Can't recall. (s that fog?)
Describe the extent of your brain fog: It comes and goes. It can happen when I'm working at my desk (Hm...where do I want to go in the next paragraph?) or working in the kitchen (What was I going to do next?).
Estimate number of doctors you have seen for Fibro related symptoms: 7-8
Do your doctors tend to focus on all your Fibro symptoms: Not.
Do your doctors treat your symptoms individually or collectively: Don't treat, except to suggest meds for insomnia that do not work.
Describe your experience with doctors: Ouch! Years ago it was brutal; later, they shrugged. A good experience, with improvement, was at the Fibro & Fatigue Clinic, where I was treated for a little more than a year: comprehensive diagnostic study, fine analysis by Dr. Erica Bial. Alas, the Boston-area clinic has closed, and I'm not enchanted with the offering of phone appointments with distant branches.
What remedies or medications have you tried: Currently, StimTein.
What makes you feel better: StimTein...probably...
What makes you feel worse: Cipro!!
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins:
Have you tried any thyroid specific treatments: A compounded thyroid Rx (for hypo). Works nicely. Probably the Rx needs updating, but I do not know how to do this (the Rx came from the defunct Fibro & Fatigue clinic).
Your theories or comments: I have long had a theory that antibiotic are a likely source of fibro. Hypothyroidism is important too as a causal factor-and it works the other way as well. It is just today that I have learned about fluoride as a toxin; it explains my reaction to Cipro, and I shall begin to avoid it! With thanks!!
Are we missing any important questions: Not. Again, thanks.

 

09/19/2009
First Name: nia
Age: 14
Male or Female: female
City: corsham
State/Province: wiltshire
Country: uk
How long have you lived there: 13 years
Where were you born: lister hospital, stevenage
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: yes
What is Your Line of Work: school
How has Fibro affected your ability to work: i try not to let it
How has Fibro affected your life: i try not to let it
What were your first symptoms: achy all over, joint pain, muscular pain
Your age at onset of symptoms: 13
How fast was your rate of decline: not very
What are your current symptoms: achy all over, joint pain, muscular pain, fatigue
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: 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: very kind, understanding
What remedies or medications have you tried: pregabalin
What makes you feel better: pregabalin
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:

 

09/19/2009
First Name: melanie
Age: 38
Male or Female: female
City: creswell
State/Province: Oregon
Country: US
How long have you lived there: 38 years
Where were you born: cottage grove, Oregon
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 field. I am a Medical Assistant, EKG technitian, Student
How has Fibro affected your ability to work: It has definately slowed me down, I get tired more easily and my mucsles hurt alot more.
How has Fibro affected your life: It has stopped me from doing many things, I can't go hiking or on a long walk or anything physical without paying for it later so I just don't do alot of things. My kids have had to miss out on some activities with me because I just can't do it, or I might not be feeling good that day. I can not plan ahead because I never know how I will feel from day to day.
What were your first symptoms: weakness in arms, hands and legs. I would drop things, trip walking alot and would have pain that would move from legs to arms, then neck.
Your age at onset of symptoms: 23
How fast was your rate of decline: very fast then taper off, then go fast again, then balance back out again. It kind of goes in sprirts.
What are your current symptoms: Head fog, chronic fatigue, muscle pain and weakness, joint pain, back, neck and shoulder pain, hip pain, numbness and tingling in feet and hands, anxiety, depression, occasional headaches, ear pain, my skin hurts sometimes, irritable bowl, abdominal pain, low back pain, foot cramps, hand cramps, occasional eye/temple pain, tremmors, insomnia, intollerance to bright light, very sensitive to heat and cold, during winter hands and feet always freezing cold, sometimes at night body gets extremely hot to touch, but not a hot flash and I usually get chilled when this happens.
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: 10-12
Describe the extent of your brain fog: sometimes it is very bad to the point that I will have short term memory loss, other times just can't remember things I am studying for school or a test. Then other times although very few, I think very clearly.
Estimate number of doctors you have seen for Fibro related symptoms: 12
Do your doctors tend to focus on all your Fibro symptoms: No, mostly they just want to treat for depression thinking that will cure my other problems
Do your doctors treat your symptoms individually or collectively: collectively
Describe your experience with doctors: very poor, except for my current primary care doc. Once a neurologist told me that maybe there is a time when I need to just NOT go to the doctor anymore.
What remedies or medications have you tried: Probably every antidepressent out there except for 2, massage therapy, accupuncture, hot tub, electrotherapy, ultrasound, chiropractor, pain meds, muscle relaxers, sleeping pills, anti-infamitories, anxiety meds, vitamins, minerals, herbal meds, just about anything I could find to maybe help.
What makes you feel better: low stress, moderate activity, lots of sleep, massage therapy, soak in hot tub or hot bath, tylnol, and amitryptilline, worm dry weather.
What makes you feel worse: sitting or walking/standing long period of times, stress, lack of sleep, cold weather, sleeping on a hard surface.
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: Iodine intake is the only thing, and that was through salt.
Your theories or comments: I have had 3 head/neck injuries, which I have heard theories on that causing fibromyalgia, and If I would love for someone to find a cure, but the simptoms of fibromyalgia are the same symptoms to so many other conditions. I heard aspertame the artificial sweetener is toxic to the body and can cause these symptoms as well.
Are we missing any important questions: no, i don't think so.

 

09/18/2009
First Name: R.
Age: 39
Male or Female: Female
City: Herndon
State/Province: VA
Country: USA
How long have you lived there: 10 years in the US
Where were you born: Iraq
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: Web Developer
How has Fibro affected your ability to work: slower than before, difficulty thinking, come to work late every day, always tired, always sleepy, forgetfulness
How has Fibro affected your life: I keep forgetting things, lack of quality sleep, muscle pain, tired, nervous or shaky
What were your first symptoms: after or during my second pregnancy (c-section) extreme muscle pain, dizziness, skin sensitivity
Your age at onset of symptoms: 37
How fast was your rate of decline: fast at the beginning
What are your current symptoms: brain fog, not as much pain, flu like symptoms and chills
Number of years since you developed symptoms of fibromyalgia: 2
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 2
Describe the extent of your brain fog: there is some cloudiness in my head that I can't get out
Estimate number of doctors you have seen for Fibro related symptoms: 2
Do your doctors tend to focus on all your Fibro symptoms: no
Do your doctors treat your symptoms individually or collectively: individually
Describe your experience with doctors: tried to give me an anti-depressant to remove the pain
What remedies or medications have you tried: horrible anti-depressant, Reiki, cranial sacral therapy
What makes you feel better: Reiki made me feel a lot better, cranial sacral therapy
What makes you feel worse: horrible anti-depressant
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins:
Have you tried any thyroid specific treatments: My doctor kept saying that my thyroid is fine but I don't think that it is.
Your theories or comments: I wish I knew why this happened. I wish I could make it go away.
Are we missing any important questions:

 

09/18/2009
First Name: Karen
Age: 54
Male or Female: Female
City: Arlington
State/Province: TX
Country: USA
How long have you lived there: 25 years
Where were you born: Gainesville, TX
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: yes
What is Your Line of Work: Public Relations for fortune 500 company. Long hours, high stress
How has Fibro affected your ability to work: A lot of joint pain and back pain. Also Brain Fog. Makes work difficul!
How has Fibro affected your life: Don't feel good. Brain fog causes problems at work. Passed over for several promotions.
What were your first symptoms: painful knots under skin, brain fog, mood issues, sleep issues,,
Your age at onset of symptoms: 38-40
How fast was your rate of decline: slow
What are your current symptoms: same as above
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: have trouble remembering what I am working on, what I need to do next. Have trouble articulating my thoughts. Skip around from one thought to another when conversing
Estimate number of doctors you have seen for Fibro related symptoms: 1
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: frustrating
What remedies or medications have you tried: Cymbalta, Ambien, Seroquel, bioidentical hormones including progesterone, DHEA, estrogen, also Armour Thyroid 30 mg.
What makes you feel better: ?
What makes you feel worse: lack of thyroid medicine
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: removed most sources of gluten
Have you tried any thyroid specific treatments: yes. It helps cold hands and feet and may help w/ mood.
Your theories or comments:
Are we missing any important questions:

 

09/17/2009
First Name: melody
Age: 45
Male or Female: female
City: chappell
State/Province: neberaska
Country: usa
How long have you lived there: 3 yrs
Where were you born: denver co
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: yes
What is Your Line of Work: mostly waitress then wharehouse now carpet cleaning
How has Fibro affected your ability to work: verry hard even cant perfrom to full qualty.sore all the time
How has Fibro affected your life: always shakey dizzyness lots of pain
What were your first symptoms: excesively huge knots under shoulder blades
Your age at onset of symptoms: 37
How fast was your rate of decline: verry quick
What are your current symptoms: dizzyness, extream pain in neck,back, chest and ribcage, arm hand loss of balance
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: not really shure
Describe the extent of your brain fog: ringing in the ears dizzynes
Estimate number of doctors you have seen for Fibro related symptoms: 2
Do your doctors tend to focus on all your Fibro symptoms: not shure what he really dose
Do your doctors treat your symptoms individually or collectively: i would say collectively
Describe your experience with doctors: they act like i am faking or something
What remedies or medications have you tried: mild pain killers,antideperission meds,massage both mild facial and altrasound.
What makes you feel better: mild pain killers and musicvcle relaxer
What makes you feel worse: the xtra antideperission
Have you tried avoiding fluoride in your diet: not really
If so, which sources of fluoride: not sure
Have you made dietary changes to avoid any other neutrotoxins: yes we do try to eat healthy lots of fruit and vegies more lean meats
Have you tried any thyroid specific treatments: no
Your theories or comments: just wish it would be treated as real pain.
Are we missing any important questions: dont think so

 

09/17/2009
First Name: andrea
Age: 33
Male or Female: female
City: kenosha
State/Province: wi
Country: USA
How long have you lived there: 6 months
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: massage therapy
How has Fibro affected your ability to work: yes
How has Fibro affected your life: yes
What were your first symptoms: widespread pain
Your age at onset of symptoms: 27
How fast was your rate of decline:
What are your current symptoms: widespread pain, brain fog, sleep disorders
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:
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: no
Do your doctors treat your symptoms individually or collectively: individually
Describe your experience with doctors: in the beginning most seemed to not believe me
What remedies or medications have you tried: anti depressants, muscle relaxers
What makes you feel better: not much
What makes you feel worse: humid 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: avoid sugar
Have you tried any thyroid specific treatments:
Your theories or comments:
Are we missing any important questions:

 

09/14/2009
First Name: Lisa
Age: 23
Male or Female: Female
City: Redford
State/Province: Michigan
Country: USA
How long have you lived there: 9 years
Where were you born: Livonia
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: waitressing, had to decrease hours and now I am working at a desk job for near minimum wage, which I am in constant pain
How has Fibro affected your ability to work: Decreased hours, noone understands at the work place so they think you are just being lazy, loss of jobs = loss of money to pay for medical bills and mortgage.
How has Fibro affected your life: I do not do nearly as much as I used to, no energy, trying numerous techniques and medications, none of which have proven totally helpful. Depressed and stressed, all I want to do is sleep and stay in the house. Always in severe pain.
What were your first symptoms: I kinda answered that above - TMJ, severe headaches
Your age at onset of symptoms: 17
How fast was your rate of decline: very fast
What are your current symptoms: generalized pain all over/headaches/irritable bowels/fatigue/weakness/PMS/anxiety/concentration problems/memory problems
Number of years since you developed symptoms of fibromyalgia: 7
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 6
Describe the extent of your brain fog: Oftentimes I stop myself in the middle of a sentence and forget what I was about to say, I also forget what happened 20 minutes ago and have trouble recalling certain words or previous thoughts.
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: varies
Describe your experience with doctors: It seems they want to get you on medications as soon as possible and are very quick to put you on an antidepressant, which they say are not as addictive as pain killers, for instance, which is not true. Some antidepressants are much harder to wean off than anything I've ever experienced.
What remedies or medications have you tried: flexeril effexor xr wellbutrin xl hydrocodone xanax neurontin skelaxin naproxen ibuprofen
What makes you feel better: hydrocodone effexor xr
What makes you feel worse: naproxen ibuprofen
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride: I happen to not drink tap water anyways
Have you made dietary changes to avoid any other neutrotoxins: I try to eat as healthy as possible
Have you tried any thyroid specific treatments: no, supposedly my thyroid is normal
Your theories or comments:
Are we missing any important questions:

 

09/10/2009
First Name: Cortney
Age: 27
Male or Female: Female
City: Pittsburgh
State/Province: PA
Country: USA
How long have you lived there: 4
Where were you born: Beaver, PA
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: tremendously affected my life and ability to work full time and take care of my son.
What were your first symptoms: Pain in my neck
Your age at onset of symptoms: 19
How fast was your rate of decline: 6 months
What are your current symptoms: chronic fatigue, pain in my hips and legs, sometimes i hurt all over
Number of years since you developed symptoms of fibromyalgia: 8 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: not really
Do your doctors treat your symptoms individually or collectively: collectively
Describe your experience with doctors: they dont understand how much pain i am in
What remedies or medications have you tried: oxy-cotin, es vicodin, neurotin, lyrica, hydrocodone, ect..
What makes you feel better: hydrocodone
What makes you feel worse: lyric makes me feel weird the next day after taking it b4 bed
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: none
Are we missing any important questions: no

 

09/10/2009
First Name: Tara
Age: 29
Male or Female: female
City: Woodstock
State/Province: Ontario
Country: Cananda
How long have you lived there: all my life
Where were you born: London ontario
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: Customer Service/retail
How has Fibro affected your ability to work: it affects every aspect from standing,to talking to customer, the worst is forgetting what i am doing midway through a transaction or taking orders for contractors
How has Fibro affected your life: it has affected my personal life with my family and friends, and my social life is non-existent, i hardly go out, i get anxiety in big crowds so avoid busy places,
What were your first symptoms: pain and fatigue
Your age at onset of symptoms: 19
How fast was your rate of decline:
What are your current symptoms: chronic pain, fatigue,memory loss, forgetfulness,
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: 3
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: not all the time
Do your doctors treat your symptoms individually or collectively: depends on what symptoms are present at the time of visit
Describe your experience with doctors: has been terrible, some think i am just lazy, others think its in my head, I had kept a journal for 3 months of my symptoms daily to take to the doctor to show him how it was affecting me and he ignored it and told me to suck it up others have been wonderful
What remedies or medications have you tried: i have tried magnesium, malic acid prednizone, lyrica effexor amitrytilene yoga hot baths heat patches, st johns wort, pilates,
What makes you feel better: amitryptilne for a while, effexor did as well but was at highest dose possible
What makes you feel worse: lyrica, was terrible had very bad brain fog, very groggy and unable to focus, upset 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: have taken aspartame out of diet
Have you tried any thyroid specific treatments: no
Your theories or comments:
Are we missing any important questions:

 

09/09/2009
First Name: J.
Age: 35
Male or Female: F
City: Russellville
State/Province: AR
Country: United States
How long have you lived there: 35
Where were you born: Russellville, AR
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 now work in software support, and merchant services support assisting customers in processing credit cards for their businesses.
How has Fibro affected your ability to work: I was forced to leave my last job for medical reasons all linked to Fibro. The pain, mood swings, irritable bowel symptoms, the lower jaw pain, the lack of concentration, and the numbness in my extremities all caused me to miss enough work that I was given the option to leave for medical reasons.
How has Fibro affected your life: At one point, fibro brought my life to a halt. I couldn't work, I could barely walk, I had drastic mood swings, hot flashes, inability to concentrate, unpredictable bowel symptoms, excruciating pain, lower jaw pain, numbness...I was first put on Lyrica which added 60 lbs to me so everything hurt even worse and I cannot seem to lose the weight because the pain prevents me from being as active as I would be normally.
What were your first symptoms: Tight muscles, Pain mostly at night, lower jaw pain, swelling and numbness in extremities, insomnia, fatigue, restless legs
Your age at onset of symptoms: 33
How fast was your rate of decline: I stopped working approximately 1 year after the first symptoms.
What are your current symptoms: Leg,arm, back and shoulder pain; numbness in all extremities, mood swings, irritable bowel symptoms, inability to maintain consciousness, suddenheadaches, insomnia, fatigue, restless legs
Number of years since you developed symptoms of fibromyalgia: almost 3
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: less than 1
Describe the extent of your brain fog: I just lose track of what I was doing or thinking very suddenly; my whole train of thought is gone and I can't get it back.
Estimate number of doctors you have seen for Fibro related symptoms: 3
Do your doctors tend to focus on all your Fibro symptoms: My rheumatologist focuses on all my symptoms
Do your doctors treat your symptoms individually or collectively: My nephrologist prefers to treat symptoms individually or refer me to someone else.
Describe your experience with doctors: I was treated like a hypochondriac at first because my symptoms presented at roughly the same time but over a few months so they felt like I was just making up symptoms to get attention or to get pain meds.
What remedies or medications have you tried: Lyrica, Cymbalta, Flexeril, Neurontin, Darvocet, Lidoderm patches, Elavil, Ibuprofen, Yoga, specific stretches prescribed by my rheumatologist
What makes you feel better: I'm currently still on all the meds except for Lyrica because it takes them all to treat all my symptoms and some of the meds I was already on to treat symptoms of chronic kidney disease. yoga and Stretching help for short periods of time
What makes you feel worse: Lyrica and the 60 lbs I gained while taking 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: No.
Have you tried any thyroid specific treatments: No.
Your theories or comments: I feel that the mental aspects of suffering from fibro aren't taken seriously enough. In the beginning, you think you are going crazy and then when you finally figure out that the symptoms are real, everyone else treats you like you are crazy or like a drug addict trying to get some pills.
Are we missing any important questions:

 

09/09/2009
First Name: Dawn
Age: 43
Male or Female: F
City: New Bern
State/Province: NC
Country: USA
How long have you lived there: 2.5 yrs
Where were you born: New Bern
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: homeschool mom
How has Fibro affected your ability to work: yes
How has Fibro affected your life: yes
What were your first symptoms: not sure, it has been going on so long
Your age at onset of symptoms: 21
How fast was your rate of decline: the last 4 years
What are your current symptoms: pain, headaches, confusion, forgetfulness, depression, allergies, teeth grinding, stiffness,
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: 1
Describe the extent of your brain fog: comes and goes. it is like you phase out, freeze, forget in midsentence, forget words for common items even when looking at them
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: yes
Describe your experience with doctors: horrible. my current doctor wants me to take Naprosen and if it worsens then give me something else. he has tested my nerves, blood work and spine...not a lot of help
What remedies or medications have you tried: exercise, diet, pain med., warm baths, massage tables
What makes you feel better: warm baths for few hours
What makes you feel worse: exercise
Have you tried avoiding fluoride in your diet: ?
If so, which sources of fluoride: I drink filtered water and do not use floride toothpaste
Have you made dietary changes to avoid any other neutrotoxins: ?
Have you tried any thyroid specific treatments: no but was tested and it was negative
Your theories or comments:
Are we missing any important questions:

 

09/09/2009
First Name: sue
Age: 62
Male or Female: female
City: s-o-t
State/Province: staffs
Country: england
How long have you lived there: 62yrs
Where were you born: staffs
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: no
What is Your Line of Work: retail
How has Fibro affected your ability to work: to tired to stand or converse
How has Fibro affected your life: dont want to do anything or go anywhere
What were your first symptoms: chronic fatigue and debilatating headaches
Your age at onset of symptoms: in my forties
How fast was your rate of decline: slow but sure
What are your current symptoms: fatigue headaches brain fog pain all over my body
Number of years since you developed symptoms of fibromyalgia: 20-25
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 10
Describe the extent of your brain fog: forgetting names cant finish sentences difficulty in communicating
Estimate number of doctors you have seen for Fibro related symptoms: lots over the years
Do your doctors tend to focus on all your Fibro symptoms: no
Do your doctors treat your symptoms individually or collectively: hard to tell
Describe your experience with doctors: they just see it as aches and pains i have to live with
What remedies or medications have you tried: herbal remedies diclofenic acid amitryptaline
What makes you feel better: nothing
What makes you feel worse: i cant feel amy 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: some
Have you tried any thyroid specific treatments: no
Your theories or comments: nobody understands the illness only those who have it nobody likes a moaner so most people suffer in silence
Are we missing any important questions: yes is it curable pleassssssse

 

09/05/2009
First Name: Kathy
Age: 50
Male or Female: female
City: tallmadge
State/Province: ohio
Country: US
How long have you lived there: 10
Where were you born: Akron. Ohio
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: yes
What is Your Line of Work: Social Worker/Counselor
How has Fibro affected your ability to work: yes
How has Fibro affected your life: I have to pace myself,cant make any long term plans because i dont know how I'm going to feel.
What were your first symptoms: after the accident
Your age at onset of symptoms: 41
How fast was your rate of decline: 6 months
What are your current symptoms: pain and stiffness
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: from the beginning
Describe the extent of your brain fog: memory laps,short term is the worst
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: pain med, muscle relaxants and antidepressant, physical therapy,suppot group
What remedies or medications have you tried: diets,massages excercise
What makes you feel better: massages
What makes you feel worse: excercise
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 feel this is a result of helping everyone and being in the helping profession.
Are we missing any important questions: no

 

09/01/2009
First Name: Maria
Age: 52
Male or Female: F
City: Gainesville
State/Province: Florida
Country: USA
How long have you lived there: since 1984
Where were you born: Pasadena, CA
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: Somewhat
What is Your Line of Work: Environmental consulting, alternative health
How has Fibro affected your ability to work: A great deal
How has Fibro affected your life: A great deal, it's very limiting
What were your first symptoms: Didn't realize I'd had it since childhood, because I didn't know that most people's muscles didn't hurt whenever they moved.
Your age at onset of symptoms: ??
How fast was your rate of decline: ??
What are your current symptoms: Pain in muscles
Number of years since you developed symptoms of fibromyalgia: 45?
Do your symptoms include brain fog: Yes
Number of years since you developed the brain fog: 34
Describe the extent of your brain fog: Downhill slowly until birth of first child, then rapidly downhill, and worse after second child, then downhill gradually until miscarriage when I almost bled to death around age 40, then rapidly downhill, and more rapidly when I started to detoxify my body of mercury.
Estimate number of doctors you have seen for Fibro related symptoms: 1
Do your doctors tend to focus on all your Fibro symptoms: Brief encounter, saw a rheumatologist a few times, got lots of bloodwork done, he said there was no known cause and the drug for it had such bad side effects he didn't recommend it, so I gave up on conventional medicine at that point.
Do your doctors treat your symptoms individually or collectively: They don't, I don't go to conventional doctors anymore.
Describe your experience with doctors: Done.
What remedies or medications have you tried: Aspirin.
What makes you feel better: Epsom salts, iodine, cod liver oil, high fat diet, raw milk, kombucha.
What makes you feel worse: Anything stressful.
Have you tried avoiding fluoride in your diet: For years I have avoided it.
If so, which sources of fluoride: Avoided it from water, dental fluoride, toothpaste, etc. for past 7-8 years at least.
Have you made dietary changes to avoid any other neutrotoxins: Yes, whenever I find out about them. I avoid glutamates and aspartates like the plague. I don't take pharmaceuticals. I don't do surgeries that require anesthesia.
Have you tried any thyroid specific treatments: Taking iodine, cod liver oil, and changing to a high fat diet has been wonderful for my thyroid.
Your theories or comments: I believe I have plenty of fluoride and other toxic halogens that are being eliminated from my body. The most painful cause, though, I believe is methylmercury. I can tell where it is in my body because it's always where the pain is.
Are we missing any important questions: Yes, you are forgetting about bromine, chlorinated hydrocarbons, organophosphate pesticides, mercury, methylmercury, and the many other toxins that can cause muscle pain and exhaustion.

 

 

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