Fibromyalgia Questionnaire & Results

Latest Update: 02/13/2012 

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37 QUESTIONNAIRE COMPLETED DATA FORMS FOR December 2009

12/31/2009
First Name: sherry
Age: 63
Male or Female: female
City: omaha
State/Province: NE
Country: USA
How long have you lived there: 25 years
Where were you born: lincoln
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: yes
What is Your Line of Work: self employed
How has Fibro affected your ability to work: get very tired and ache
How has Fibro affected your life: sleep a lot
What were your first symptoms: headaches
Your age at onset of symptoms: 35
How fast was your rate of decline: pretty slow
What are your current symptoms: headache, sleep problems, sore spots
Number of years since you developed symptoms of fibromyalgia: 30 years
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 10 years
Describe the extent of your brain fog: can't remember what I want to say
Estimate number of doctors you have seen for Fibro related symptoms: 5
Do your doctors tend to focus on all your Fibro symptoms: yes
Do your doctors treat your symptoms individually or collectively: collectively
Describe your experience with doctors: pretty good most of the time
What remedies or medications have you tried: cymbalta lyrica
What makes you feel better: hydrocodone
What makes you feel worse: tylenol
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: yes
Have you tried any thyroid specific treatments: no
Your theories or comments:
Are we missing any important questions:

 

12/31/2009
First Name: angel
Age: 34
Male or Female: female
City: trinity
State/Province: nc
Country: us
How long have you lived there: 9yrs
Where were you born: high point nc
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: Convience store manager
How has Fibro affected your ability to work: I have trouble standing or sitting for any period of time. The pain becomes to intense.
How has Fibro affected your life: It has taken over every aspect. The pain prevents me from doing everyday things at times. I have trouble sleeping and am constantly fatigued.
What were your first symptoms: Pain
Your age at onset of symptoms: 29
How fast was your rate of decline: Very quick
What are your current symptoms: Extreme pain, constant fatigue, sleeplessness, stomach problems like diarrhea, trouble walking, especially up stairs
Number of years since you developed symptoms of fibromyalgia: 6
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: 6
Do your doctors tend to focus on all your Fibro symptoms: No
Do your doctors treat your symptoms individually or collectively: Individually
Describe your experience with doctors: Most of the doctors seemed to feel I was imagining it. Now that it has become more common, I don't have that problem, but some seem to feel that more exercise will cure what ails me.
What remedies or medications have you tried: Cymbalta, lyrica,elvil, tramdol
What makes you feel better: Cymbalta helped with walking
What makes you feel worse: Elavil
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: At 34 I feel like giving up some days. No one who lives mainly pain free can understand what its like to be in pain at all times. The second doctor I saw told me that there was no cure, I was going to get worse, just deal with it. I don't want to just deal, I want it gone, or at least manageable. As quickly as it has progressed, I'm afraid to imagine the future.
Are we missing any important questions: what effect this has on your family

 

12/30/2009
First Name: Violet
Age: 63
Male or Female: Female
City: Hudson
State/Province: Florida
Country: USA
How long have you lived there: 22 yrs.
Where were you born: Salem Mo.
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: no
What is Your Line of Work: waitress
How has Fibro affected your ability to work: had to stop working and got on my disability.
How has Fibro affected your life: many ways
What were your first symptoms: fatigue
Your age at onset of symptoms: 51
How fast was your rate of decline: very fast
What are your current symptoms: fatigue...heart problems
Number of years since you developed symptoms of fibromyalgia: 12 yrs
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 12 yrs
Describe the extent of your brain fog: very bad, cannot remember something that I just read...hard to follow instructions
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: no
Describe your experience with doctors: don't even try to explain it to them, just try to self medicate
What remedies or medications have you tried: numerous that I don't remember....anti depressants, sleeping meds, seizures meds, pain relivers of many kinds.
What makes you feel better: nothing that I have tried so far.
What makes you feel worse: trying to do any kind of work
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride: I do filtered water reverse osomis but drink green tea, and take a lot of prescriptiong drugs.
Have you made dietary changes to avoid any other neutrotoxins: no
Have you tried any thyroid specific treatments: no
Your theories or comments: It is hard to try to get a doctor to understand your real needs. they just want to write you a script for medication. So I have just learned to try and live with the problem.
Are we missing any important questions: no

 

12/30/2009
First Name: Jan
Age: 53
Male or Female: F
City: PORTLAND
State/Province: OR
Country: USA
How long have you lived there: 2 years
Where were you born: Eugene, OR
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 Services
How has Fibro affected your ability to work: I was forced to request accommodation under the ADA guidelines for a change in job. I was working as a front line supervisor, however could not work nights or walk the 5 to 6 miles a day required by the position. Now, I sit at a desk all day and try not to allow being stationary for so long at a stretch cause my back problems.
How has Fibro affected your life: Completely dictacts my private time activities. There is nothing I can do anymore with any enthusiasm, regardless of how much I might have enjoyed the activity in the past. I have no significant other - I separated and divorced my husband 3 years ago and I have no desire to try to make that type of connection again. I just don't have the stamina! It is difficult to think that my 85 year old mother is actually more capable of doing things that I am, but it is a fact. Not looking forward to the rest of my life in this condition.
What were your first symptoms: Pain! I had several types of medical test on different parts of my body (knees, shoulders, neck) prior to the diagnosis.
Your age at onset of symptoms: 37
How fast was your rate of decline: In the beginning not to bad. I walked a tight-wire, keeping my symptoms mostly under control unless I was affected by something like a cold, or an outside stressor such as job change
What are your current symptoms: Fatigue; body pain; headaches; weakness; IBS; sleep disruption
Number of years since you developed symptoms of fibromyalgia: 16
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 used to be able to multi task and remember tiny little details. Now it is all I can do some days to stay focused on one project to completion. I used to have goals and asperations. Now my only goal is to make it through the day without embarassing myself.
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: both
Describe your experience with doctors: I have been blessed by having a GP who recognized Fibro for what it was early on. He is well aware that any outside influence can negatively affect my symptoms
What remedies or medications have you tried: To many to list; currently taking Cymbalta;Lyrica;diclofenec;trazadone;diazapam
What makes you feel better: Heat and sleep
What makes you feel worse: Cold and overdoing
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: Have used a course of medicine for an underactive thyroid
Your theories or comments: I wouldn't wish this on anyone. If you do not have Fibro, you can't understand how insidious this condition is. I still face people who, upon hearing I have Fibro, make rude comments about there is no such thing or that I am just a slacker. I was a Class A personality-overachieving at every turn. This is a living hell!
Are we missing any important questions: I have unusually low blood pressure. In coming out of surgery one time a nurse thought I was dying because my BP was so low. I had to talk with her and assure her that I was doing fine and that the BP reading was normal for me.

 

12/30/2009
First Name: Lesley
Age: 45
Male or Female: Female
City: Stillwater
State/Province: OK
Country: USA
How long have you lived there: 14 years
Where were you born: Oklahoma
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: secretary
How has Fibro affected your ability to work: concentration, fatigue, muscle pain
How has Fibro affected your life: same as above
What were your first symptoms: joint and muscle pain, fatigue, numbness, tingling
Your age at onset of symptoms: 33 years
How fast was your rate of decline: months
What are your current symptoms: joint, muscle pain, stiffness, mental fatigue, numbness and tingling, visual
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: 12
Describe the extent of your brain fog: short term memory loss
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: individually
Describe your experience with doctors: not good
What remedies or medications have you tried: mercury removal, exercise, nutrition
What makes you feel better: exercise, mercury removal, nutrition, rest
What makes you feel worse: poor diet, lack of exercise, lack of adequate rest
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: yes
Have you tried any thyroid specific treatments: no
Your theories or comments: I believe theres a strong connection to dental mercury
Are we missing any important questions:

 

12/29/2009
First Name: Roger
Age: 46
Male or Female: Male
City: Kearney
State/Province: NE
Country: United States
How long have you lived there: 3 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/part time only
What is Your Line of Work: Retail sales
How has Fibro affected your ability to work: Yes
How has Fibro affected your life: Yes
What were your first symptoms: pain
Your age at onset of symptoms: 33
How fast was your rate of decline: Days
What are your current symptoms: pain and stiffness
Number of years since you developed symptoms of fibromyalgia: 13
Do your symptoms include brain fog: YES
Number of years since you developed the brain fog: 13
Describe the extent of your brain fog: I have CFIDS also, so it's hard to know if it's the fibro or CFS. I have gotten lost in the car, not been able to find my car in a parking lot, and even been confused in large stores.
Estimate number of doctors you have seen for Fibro related symptoms: 5
Do your doctors tend to focus on all your Fibro symptoms: Some, mostly.
Do your doctors treat your symptoms individually or collectively: individually
Describe your experience with doctors: Most have been great, caring and really try listening. I am careful to not complain unless it's a quality of life problem or more than 3 -5 times.
What remedies or medications have you tried: alka seltzer, B12, hot long steaming baths, pain relievers OC.
What makes you feel better: I have an old claw foot tub, I fill it full and float for hours in hot steaming water with very few pressure points touching, it's wonderful. A jacuzzi would work better.
What makes you feel worse: over doing.
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: Learning what makes me feel bad and avoiding that is the best chance I stand.
Are we missing any important questions: Yes, relationship issues. How can you date or keep a spouse when you can't hardly move? Any suggestions or ideas on how not to be cranky and bitter when we hurt?

 

12/29/2009
First Name: Elaine
Age:
Male or Female: 49
City: Moreno Valley
State/Province: CA
Country: United States
How long have you lived there: 26 years
Where were you born: Pennsylvania
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: Elementary Teacher
How has Fibro affected your ability to work: yes
How has Fibro affected your life: I'm in pain ALL the time. I do not work as fast and am exhausted ALL the time.
What were your first symptoms: I remember being exhausted
Your age at onset of symptoms: 7-8 years
How fast was your rate of decline: Gradual with the exception of the exhaustion
What are your current symptoms: pain, fatigue, depression
Number of years since you developed symptoms of fibromyalgia: 7-8 years
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 1-2 years
Describe the extent of your brain fog: I forget things and find myself frustrated about this. I think I should remember some things that are important to me.
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: Yes
Describe your experience with doctors: Even though my doctor seems to understand the symptoms of fibromyalgia, she seems to just pass off my symptoms to other things.
What remedies or medications have you tried: It was some kind of antihistamine to help me sleep.
What makes you feel better: mild massages, better sleep
What makes you feel worse: A lot of physical work, lack of sleep
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: no
Have you tried any thyroid specific treatments: no
Your theories or comments: Sometimes I do not know if some of my symptoms are fibro related or due to the depression.
Are we missing any important questions:

 

12/29/2009
First Name: Christine
Age: 35
Male or Female: female
City: Pompano Beach
State/Province: FLORIDA
Country: usa
How long have you lived there: 10 years
Where were you born: dayton 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: graphic design
How has Fibro affected your ability to work: i cannot concentrate, i forget things often, it is very hard to get thru an entire work day
How has Fibro affected your life: i find it very hard to perform daily functions; I mean i know i have to do them so I do, but it sucks b/c I know I will be in pain doing them; Aand going to work everyday is very hard, but again i need money and health insurance :(
What were your first symptoms: toe joints ached, felt like I was walking on broken toes. I thought it was just my new high heels affecting my feet :(
Your age at onset of symptoms: 335
How fast was your rate of decline: pretty fast 3 months? ALthough now I see symptoms that I have had minor versions of for years, and ignored or gotten thru the pain.
What are your current symptoms: Joint pains in toes, fingers, shoulders, knees; mouth ulcers and severe gum pain; chronic fatigue; insomnia; constant yeast infections; rashes on my scalp, torso and in nose; phlegmy and coughing; memory and concentration probs; flushing in the face; mild fever for 5 months
Number of years since you developed symptoms of fibromyalgia: Hmmm.... maybe minor symtoms 10 years ago, major flare up 5 months ago
Do your symptoms include brain fog: YES!
Number of years since you developed the brain fog: 3 mos
Describe the extent of your brain fog: Has gotten worse, I cna be talking and by the end of the sentence forgotten what I was talking about...
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 look at one or two or 3 symptoms but no more
Do your doctors treat your symptoms individually or collectively: individually
Describe your experience with doctors: At first they run all this lab work and I am positive about finding someting, but then when they diagnoses me with FM they seem to fall flat and not know how to help me and seem to lose interest
What remedies or medications have you tried: Limbrel, Mobic
What makes you feel better: Limbrel and Mobic have reduced the joint pain quite a bit. Sitting and not doing anything for a few days makes me feel better :( but is not practical for living life.
What makes you feel worse: Walking, performing daily activities like going to the grocery store, getting gas for my car, making dinner, doing dishes
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 first disgnosed with Lyme Disease, but after 3 weeks on doxycyclene and not feeling better (but feeling worse!) My doctor then discarded this diagnosis, despite positive test results, and moved on to FM.
Are we missing any important questions:

 

12/29/2009
First Name: Judy
Age: 64
Male or Female: female
City: Kearney
State/Province: ne
Country: usa
How long have you lived there: 46 years
Where were you born: Nebraska
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: yws
What is Your Line of Work: support
How has Fibro affected your ability to work: yes
How has Fibro affected your life: yes
What were your first symptoms: aching
Your age at onset of symptoms: 56
How fast was your rate of decline: moderate
What are your current symptoms: aching, hurting, stiffness
Number of years since you developed symptoms of fibromyalgia: 9 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: can't remember as quickly
Estimate number of doctors you have seen for Fibro related symptoms: 2
Do your doctors tend to focus on all your Fibro symptoms: no- RA
Do your doctors treat your symptoms individually or collectively: collectively
Describe your experience with doctors: adequate
What remedies or medications have you tried: pain and antiinflammatory
What makes you feel better: warm weather
What makes you feel worse: cold
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride: tap water
Have you made dietary changes to avoid any other neutrotoxins: no
Have you tried any thyroid specific treatments: no
Your theories or comments:
Are we missing any important questions:

 

12/28/2009
First Name: Amy
Age: 34
Male or Female: Female
City: Wickliffe
State/Province: KY
Country: usa
How long have you lived there: 3 yrs
Where were you born: 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: Bartender
How has Fibro affected your ability to work: Cannot stand for long periods of time
How has Fibro affected your life: Hard to take care of special needs child, do daily chores around the house, and even just walk some days
What were your first symptoms: muscle pain and weakness
Your age at onset of symptoms: 34
How fast was your rate of decline: 3 months
What are your current symptoms: muscle and joint pain, all over weakness, insomnia, restless leg syndrome, brain fog, 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: moderate
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 have a wonderful general practitioner who caught it immediately
What remedies or medications have you tried: Savella -- just started it a few weeks ago
What makes you feel better: hot baths
What makes you feel worse: moving
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: none yet
Have you tried any thyroid specific treatments: no
Your theories or comments:
Are we missing any important questions:

 

12/28/2009
First Name: angel
Age: 37
Male or Female: female
City: colorado springs
State/Province: co
Country: usa
How long have you lived there: 28 years
Where were you born: wilmington, de
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: human resources/clerical
How has Fibro affected your ability to work: fatigue
How has Fibro affected your life: no energy, depression, chronic pain has been debilitating
What were your first symptoms: migraines, chronic unrelieved pain
Your age at onset of symptoms: 30
How fast was your rate of decline: 3 months from diagnosis to bed ridden
What are your current symptoms: frequent flareups
Number of years since you developed symptoms of fibromyalgia: 8
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 8
Describe the extent of your brain fog: lack of concentration, memory problems
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: that they don't believe me about my symptoms
What remedies or medications have you tried: vicodin, percocet, flexeril, lyrica
What makes you feel better: an organic diet free of processed foods and sugars.
What makes you feel worse: stress, poor diet, flare ups
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, tried cleansing, organic juicing, coffee enemas
Have you tried any thyroid specific treatments: yes, thyrostim
Your theories or comments:
Are we missing any important questions:

 

12/28/2009
First Name: Terri
Age: 49
Male or Female: female
City: Havre
State/Province: MT
Country: United States
How long have you lived there: 29 yrs
Where were you born: Montana
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: Paraprofessional, (teachers aide)
How has Fibro affected your ability to work: It does affect my memory. The aches and pains I can deal with, but the daily lack of memory makes me feel so stupid.I am fortunate to work with 2nd and 3rd graders which is not as intellectually challenging and I can cover my tracks fairly easy, but it still makes me nervous,like I'm hiding something.
How has Fibro affected your life: I have to be careful to not physically overdue it as it will set me back. I have gone on a gluten free diet which helps a great deal.I also cout out of my diet white potatoes,white rice,and products with carageenan.
What were your first symptoms: needle like itching on my thighs right after my 2nd child was born by c-section.
Your age at onset of symptoms: 33
How fast was your rate of decline: very fast. I had two small children, I was exausted from the first one who was born premature and was very ill for many months.
What are your current symptoms: muscle soreness,brain fog,memory loss,fatigue.
Number of years since you developed symptoms of fibromyalgia: 16
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 16
Describe the extent of your brain fog: I have a set schedule each day at my job. I have to carry a schedule with me to remember it. I can't remember somedays the difference between a noun and a verb. I forget names,places, things that happen. My husband will tell me things and I just don't remember him telling me.
Estimate number of doctors you have seen for Fibro related symptoms: 3
Do your doctors tend to focus on all your Fibro symptoms: yes
Do your doctors treat your symptoms individually or collectively: collectively
Describe your experience with doctors: Conventional doctors want to give me painkillers which I refuse to take.I prefer Natureopathic doctors but cant afford them.Accupuncture helped.
What remedies or medications have you tried: Thyroid medication.Antidepression medication. I avoid foods that contain gluten, starch,&carageenan.
What makes you feel better: vegetable diet, moderate exercize,avoid coffee,
What makes you feel worse: wheat products,potatoes,bread
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: not sure.
Have you tried any thyroid specific treatments: not in the last 2 years.my thyroid levels have tested normal.
Your theories or comments: Try the Daniel Fast.It is a very disciplined diet, but I have never felt better when I did it.
Are we missing any important questions:

 

12/27/2009
First Name: Jane
Age: 50
Male or Female: Female
City: by Saskatoon
State/Province: Saskatchewan
Country: Canada
How long have you lived there: 27 years
Where were you born: by Yorkton
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: yes ( barely)
What is Your Line of Work: very small rural post office
How has Fibro affected your ability to work: This is basically all i can do.. sit for 5 hours a day and drive home.. other than this i am virtually unemployable at this point
How has Fibro affected your life: I can't walk ( a block is maximum) then i begin to labour breathing and ache so bad i can't manage.. all aspects..I am so tired ... I don't do anything anymore
What were your first symptoms: My legs hurt going up a small flight of stairs in 2001..
Your age at onset of symptoms: 41 yrs
How fast was your rate of decline: hard to tell coz i also had Hypothyroidism at this time and depression all diagnosed at age 42
What are your current symptoms: Oh now it is bad... can not walk far without usinf Maximum energy... lack of mobility in conjunction with over eating and i quit smoking and thyroid ailments caused a extreme weight gain ..causing further pain and inflammation..poor diet...
Number of years since you developed symptoms of fibromyalgia: 9 yrs
Do your symptoms include brain fog: Extreme memory loss
Number of years since you developed the brain fog: about 5 yrs ago
Describe the extent of your brain fog: short term memory seems gone.. i forget things seconds later...forgot namess/procedures/forgot how to spell easy words.. lost my vocabulary so many many more
Estimate number of doctors you have seen for Fibro related symptoms: I live rural so just 1
Do your doctors tend to focus on all your Fibro symptoms: they are so busy , our time is limited... He tries...
Do your doctors treat your symptoms individually or collectively: individually.. weight loss is being treated now...I have opted for no pain killers..altho i am seriously thinking Lyrica will help.. it is very expensive and i cannot afford it... but i must do something
Describe your experience with doctors: I am fortunate my doctor told me what i had by watching me... and with my description...I do have a hard time explainign the pain though... more over how debilitating it is... I can't walk without thinking I am going to die ( seriously)
What remedies or medications have you tried: I am on Effexor/lorazepam/synthroid and apo clorazepate
What makes you feel better: seems when the weather changes my body does too... NO wind that would help ... a medicine like Lyrica that is not pricey...at this point i would like weight off me... i think that would make me feel better...I just don't know.. NO pain would be the best answer here
What makes you feel worse: My period seems to really aggrevate it seriously..especially before and during...
Have you tried avoiding fluoride in your diet: I drink Bottled water
If so, which sources of fluoride: tap water..not clear on what this message means or where i find flouride other than water from the tap..
Have you made dietary changes to avoid any other neutrotoxins: this is upcoming when i meet with the dietician..so answer is no..
Have you tried any thyroid specific treatments: Not sure again what this means
Your theories or comments: Pls I do hope this helps... gotta get rid of the pain.. so i can walk and lose weight...
Are we missing any important questions: I don;t think so..except i think very anxious people in my opinion are very prone to this..tense people...

 

12/27/2009
First Name: Tammy
Age: 37
Male or Female: Female
City: Amarillo
State/Province: TX
Country: USA
How long have you lived there: 34 years
Where were you born: Bossier City, LA
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: yes
What is Your Line of Work: Accounting
How has Fibro affected your ability to work: Takes longer to figure things out. Sometimes can't concentrate on what I'm doing...can't remember certain details
How has Fibro affected your life: Always fatigued. Can't always spend the time with the kids I want to. Not able to get housework done. ALWAYS in pain.
What were your first symptoms: Numbness in legs, arms and face.
Your age at onset of symptoms: 35
How fast was your rate of decline: Immediate
What are your current symptoms: Constant pain in legs, arms, etc. EXTREME fatigue, brain fog and other strange things. Sometimes hearing is affected.
Number of years since you developed symptoms of fibromyalgia: 2 1/2 years
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 2 1/2 years
Describe the extent of your brain fog: So bad I sometimes can't even think of a certain word. Can't remember names, names of songs, words to songs, unable to remember details of my work or things that people tell me.
Estimate number of doctors you have seen for Fibro related symptoms: 5
Do your doctors tend to focus on all your Fibro symptoms: No. Usually avoid discussing.
Do your doctors treat your symptoms individually or collectively: Collectively
Describe your experience with doctors: Told to take Advil for the pain and given drugs to help sleep that I refuse to take.
What remedies or medications have you tried: Lyrica, Cymbalta and refused to take anymore.
What makes you feel better: Lots of rest. Requires me to take 4 advil at a time.
What makes you feel worse: Over doing it on house work or not getting enough sleep. Weather seems to make pain worse.
Have you tried avoiding fluoride in your diet: yes
If so, which sources of fluoride: Water, toothpaste
Have you made dietary changes to avoid any other neutrotoxins: no
Have you tried any thyroid specific treatments: no
Your theories or comments: Wish I could find a fool proof method to "heal" my body or give it a boost.
Are we missing any important questions: Not that I can think of.

 

12/26/2009
First Name: Missy
Age: 50
Male or Female: Female
City: Scott City
State/Province: Missouri
Country: USA
How long have you lived there: 15 years
Where were you born: Farmington, MO
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: no
What is Your Line of Work:
How has Fibro affected your ability to work: I can no longer work.
How has Fibro affected your life: I can no longer do acttivites with my family.
What were your first symptoms: joint pain
Your age at onset of symptoms: 45
How fast was your rate of decline: Very fast. I was disabled within two years of diagnosis
What are your current symptoms: joint and muscle pain, fatigue, foggy mind, forgetfulness, swelling of hands, feet, ankles, fatigue and sleeplessness.
Number of years since you developed symptoms of fibromyalgia: five years maybe more
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 3 years
Describe the extent of your brain fog: i forget what I'm talking about in the middle of talking. I have forgotted who I've called until they answer the phone. I have a feeling of "floating"
Estimate number of doctors you have seen for Fibro related symptoms: 4
Do your doctors tend to focus on all your Fibro symptoms: One dr. does
Do your doctors treat your symptoms individually or collectively: collectively
Describe your experience with doctors: most doctors just tell me that I'm "too nice a person for this to happen." My chiropractor has been a Godsend
What remedies or medications have you tried: many supplements, accupunture, and NRCT
What makes you feel better: sleep and relaxation
What makes you feel worse: any activities
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: yes, I'm trying to give up sugar.
Have you tried any thyroid specific treatments: yes, Iodine
Your theories or comments: I have no idea. I have a hard time concentrating.
Are we missing any important questions:

 

12/25/2009
First Name: Judy
Age: 55
Male or Female: f
City: kfar saba
State/Province: other
Country: israel
How long have you lived there: 30 years
Where were you born: US
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: Administration
How has Fibro affected your ability to work: No
How has Fibro affected your life: Less energy
What were your first symptoms: Muscle pain
Your age at onset of symptoms: 52
How fast was your rate of decline: Very quick
What are your current symptoms: Fatigue, very little muscle pain
Number of years since you developed symptoms of fibromyalgia: 3
Do your symptoms include brain fog: Sometimes
Number of years since you developed the brain fog:
Describe the extent of your brain fog: forgetfullness
Estimate number of doctors you have seen for Fibro related symptoms: 3
Do your doctors tend to focus on all your Fibro symptoms:
Do your doctors treat your symptoms individually or collectively:
Describe your experience with doctors:
What remedies or medications have you tried: SSRIs at first, then Guaifenesin
What makes you feel better: Guaifenesin
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: Recommend all fibromyalgia sufferers to use the guaifenesin protocol, which makes me almost symptom free.
Are we missing any important questions:

 

12/25/2009
First Name: Lee
Age: 41
Male or Female: male
City: brisbane
State/Province: QLD
Country: australia
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: only a few hours a week
What is Your Line of Work: graphic design
How has Fibro affected your ability to work: feel to unwell to work
How has Fibro affected your life: unable to leave the house otherthan for Dr's appointments, lost all of my friends, isolated and alone
What were your first symptoms: fatigue and mental fog
Your age at onset of symptoms: 37
How fast was your rate of decline: slow at first but got dramatically worse overnight
What are your current symptoms: flu like symptoms, all over pain and stiffmess, headaches, fever, night sweats, blured vision, fatigue, dizziness, nausea, weight gain, weakness, brain fog, can't sleep
Number of years since you developed symptoms of fibromyalgia: 4
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 4
Describe the extent of your brain fog: can't concentrate on anything, mix up my words, can't answer simple questions, slur words
Estimate number of doctors you have seen for Fibro related symptoms: 9
Do your doctors tend to focus on all your Fibro symptoms: the latest Dr does, all others did not
Do your doctors treat your symptoms individually or collectively: collectively
Describe your experience with doctors: new one is great, all others have said none of my symptoms are connected, have said it's all in my head etc
What remedies or medications have you tried: various pain and anti inflamitory meds, anti depressants, vitamin B injections, light exercise
What makes you feel better: nothing
What makes you feel worse: even just thinking about having to do something can bring on symptoms, physical activity is deadly, stress, lack of sleep
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: i have always eaten well anyway
Have you tried any thyroid specific treatments: no
Your theories or comments:
Are we missing any important questions:

 

12/23/2009
First Name: dave
Age: 50
Male or Female: male
City: towcester
State/Province: northamptonshire
Country: uk
How long have you lived there: 50 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: engineering
How has Fibro affected your ability to work: no longer have any stamina, cant work problems out, losing use of hands for fine work
How has Fibro affected your life: broken relationship, feeling down, living with constant pain, cant do the things i used to enjoy
What were your first symptoms: tiredness, extreme pain in muscles,
Your age at onset of symptoms: 42
How fast was your rate of decline: slow
What are your current symptoms: pain, lack of concentration, lack of cordination,constant tirdeness.
Number of years since you developed symptoms of fibromyalgia: 8 years
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 2 years
Describe the extent of your brain fog: cant remememder what im doing, not able to recall things
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: individually
Describe your experience with doctors: poor only one had appreciation of how bad fybro can be,
What remedies or medications have you tried: anti inflammateries, pain killers, amatrypeline
What makes you feel better: co proxamol
What makes you feel worse: lack of sleep, 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: eat a balanced diet
Have you tried any thyroid specific treatments: levrthyroxine 100mg daily
Your theories or comments: lack of support from doctors, no appreciating to how helpless you are with it, why take away the only pain killers that helped us carry on some sort of normal life
Are we missing any important questions:

 

12/23/2009
First Name: Rochelle
Age: 29
Male or Female: Female
City: Townville
State/Province: SC
Country: USA
How long have you lived there: 8 Months
Where were you born: MI
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: no
What is Your Line of Work:
How has Fibro affected your ability to work: Yes
How has Fibro affected your life: Yes
What were your first symptoms: Both of my knees started to give me problems
Your age at onset of symptoms: 19
How fast was your rate of decline: It took a total of 6 years for my whole body to start becoming affected
What are your current symptoms: Chronic, wide-spread pain, achey, tired, insomnia, depression, etc
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: 10
Describe the extent of your brain fog: Sometimes I just can't think or loose track of things
Estimate number of doctors you have seen for Fibro related symptoms: 30+
Do your doctors tend to focus on all your Fibro symptoms: No, they didn't know what was going on with me until this year (Apr 2009), and now they won't do anything to help me
Do your doctors treat your symptoms individually or collectively: They don't do anything to help me
Describe your experience with doctors: I'm fed up with doctors, they don't do me any good and they do not help me in the slightest
What remedies or medications have you tried: All pain medications make me sick, and the only thing that has slightly helped is something called fibro-response
What makes you feel better: nothing
What makes you feel worse: pretty much everything affects me in some form or fashion
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: no
Have you tried any thyroid specific treatments: no
Your theories or comments:
Are we missing any important questions:

 

12/22/2009
First Name: Marion
Age: 57
Male or Female: female
City: Sooke
State/Province: BC
Country: Canada
How long have you lived there: 31 years
Where were you born: Alberta, 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: accounting
How has Fibro affected your ability to work: could not do it any more
How has Fibro affected your life: every thing has changed
What were your first symptoms: pain in back, locked shoulder, plantar facaitis, knee pain
Your age at onset of symptoms: 49
How fast was your rate of decline: very fast-six months later, I was in a lot of pain
What are your current symptoms: pain all over, alot in my feet and lower back. Legs feel sore all the time
Number of years since you developed symptoms of fibromyalgia: 8 years
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 6
Describe the extent of your brain fog: comes and goes. When I take iron pills, the brain works better
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: now everything is chalked up to fibromyalgia
What remedies or medications have you tried: do not remember-all meds were making we gain one pound per week, so I quit them all
What makes you feel better: b12
What makes you feel worse: sitting for an hour
Have you tried avoiding fluoride in your diet: yes
If so, which sources of fluoride: toothpaste
Have you made dietary changes to avoid any other neutrotoxins: atkins diet
Have you tried any thyroid specific treatments: eltroxin
Your theories or comments: originally I thought it was part of the change of life
Are we missing any important questions:

 

12/19/2009
First Name: KG
Age: 47
Male or Female: F
City: BOISE
State/Province: IDAHO
Country: USA
How long have you lived there: 15 YRS
Where were you born: POST FALLS, IDAHO
Is this the first time you have taken our questionnaire: Yes
If not, why are you returning:
Are you still working: NO
What is Your Line of Work: WAITRESS, BOOK KEEPER, HOUSE WIFE
How has Fibro affected your ability to work: HARD TO FOCUS, TIRED, PAIN, PAIN MEDICATION MAKES IT HARD TO FIND A JOB, AND EXPLAINE WHY I AM TAKING THEM. I ALSO HAVE ARTHRITIS IN MY BACK AS WELL AS SEVERAL OTHER ISSUES WITH IT-TORN,DISC ECT.
How has Fibro affected your life: MY LIFE IT SEEMS AT TIMES HAS COME TO A COMPLETE STOP, OR SHOULD I SAY EVERYBODY KEEPS MOVING ON, AND I AM LEFT BEHIND, AND MISSOUT BECAUSE I AM HURTING, OR I JUST DONT HAVE THE ENERGY. WHEN I HAVE A GOOD DAY THEY ARE FAR AND FEW
What were your first symptoms: I HAVE AS LONG AS I CAN REMEMBER HAD CRAZY PAINS, FLASHES OF PAINS IN SHOLDERS, ELBOWS, EVERY JOINT ONE TIME OR ANOTHER, WAS TOLD THEY WERE GROWING PAINS. SOMETIMES THEY LAST A FEW MIN. AND OTHER TIMES A FEW DAYS. I REALLY DO NOT KNOW IF I HAD IT ALL THIS TIME OR NOT.
Your age at onset of symptoms: MY REG DOCTOR TOLD ME 10/08 OR SHOULD I SAY, WHEN THEY CALLED THE DAY BEFORE MY APPOINTMENT TO REMIND ME THE LADY SAID FOR MY FYBRO CHECK UP. I WAS VERY CONFUSSED AND TOLD HER SHE HAD THE WRONG PERSON. WE WENT THRU THE WHOLE NAME,SS, DATE OF BIRTH. I TOLD HER THE DOC NEVER TOLD ME I HAD FYBRO?! WHY DIDNT HE TELL ME? SO I WAS TOLD AT AGE 46
How fast was your rate of decline: ONCE I NEW, I SOON QUIT MY JOB (UNRELATED) AND WENT INTO A VERY BAD ONE MONTH DEPRESSION,STAYED IN BED MOST OF THE TIME. SO REAL FAST.
What are your current symptoms: FYBRO FOG, BODY HURTS FOR NO APARENT REASON, TIRED ALL THE TIME, DEPRESSED, CAN NEVER FOCUS TO DO IMPORTAND TASKS.
Number of years since you developed symptoms of fibromyalgia: I THINK I HAVE HAD IT EVER SINCE MY BACK SURGURY. AGE 27-28
Do your symptoms include brain fog: YES
Number of years since you developed the brain fog: 4
Describe the extent of your brain fog: VERY HARD TO FOCUS, MY MOUTH CANT SAY WHAT MY BRAIN IS THINKING. WRONG WORDS ALWAYS COME OUT OF MY MOUTH. SOMETIMES I MAKE NO SENCE AT ALL, AND JUST HAVE TO LAUGH AT MYSELF. CAN NOT REMEMBER IMPORTANT THINGS I NEED TO DO
Estimate number of doctors you have seen for Fibro related symptoms: 4
Do your doctors tend to focus on all your Fibro symptoms: I THINK HE DOES
Do your doctors treat your symptoms individually or collectively: INDIVIDUALLY
Describe your experience with doctors: THEY TEND NOT TO BELEIVE ME, HAVE BEEN ACCUSED OF DRUG SEEKING, THAT IS UNTIL THEY GET MY MED HISTORY FROM OTHER DOCS AND THEN THEY PAY MORE ATTENTION. ALOT OF EYEBROWS, HEAD SHAKING. SAMPLE DRUGS TO TRY, THE DOC I HAVE NOW DOES LISTEN TO ME, AND KNOWS I KNOW MY BODY BETTER THAN HE DOES. HE ALWAYS EXPLAINES EVERYTHING HE WANTS TO TRY AND WHY.
What remedies or medications have you tried: CYMBALTA& LYRICA
What makes you feel better: HTR=E-RING AND ESTRASTAT GABAPENTIN=FOOT PAIN NORCO=BACK CELEXA=DEPRESSION XANAX=NERVES ZANAFLEX=SPASMS
What makes you feel worse: STRESS OF ANYKIND, LAYING AROUND MAKES ME FEEL WORSE, BUT IF I DONT HAVE SOMTHING I HAVE TO DO, I WONT DO 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: HAVE STOPPED EATING FAST FOOD
Have you tried any thyroid specific treatments: NO
Your theories or comments: I FEEL MY BODY IS IN TOXIC OVERLOAD, THAT MY FILTERS ALL NEED FLUSHED LIKE A CLOGED DRAIN.
Are we missing any important questions: I HAVE TALKED TO SEVERAL PEOPLE ABOUT SUDDEN ONSET NUT ALLERGIES, AND ALLERGIC TO PENACILLIN-SAME SYMPTOMS AS ME, WHAT CHEMICALS ARE THEY USING TO GROW NUTS, WHAT DO THE SYNTHTIC ANTI-BIOTICS HAVE IN THEM, I AND OTHERS I TALKED TO (ABOUT 6) OVER THE LAST FIVE YRS HAVE ALL HAD THIS IN COMMON. ANTIBIOTICS DO NOT WORK WELL ON ME. I ALWAYS GET SICK, REALLY SICK AFTER I HAVE HAD A COURSE OF THEM. ALSO, I WOULD LIKE TO THANK YOU FOR LISTENING.:)

 

12/18/2009
First Name: vaneet
Age: 38
Male or Female: female
City: charles town
State/Province: wv
Country: usa
How long have you lived there: 11
Where were you born: 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: manager
How has Fibro affected your ability to work: cant lift anything or do normal work related physical activity
How has Fibro affected your life: cant enjoy time with family
What were your first symptoms: pain in elbow
Your age at onset of symptoms: 38
How fast was your rate of decline: few months
What are your current symptoms: pain in arm and back
Number of years since you developed symptoms of fibromyalgia: 0
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: individually
Describe your experience with doctors: they dont seem to understand what the problem is
What remedies or medications have you tried: lodine ibuprofen full cardiac exam with ekg exercise and yoga
What makes you feel better: rest
What makes you feel worse: picking upheavy items
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride: water maybe
Have you made dietary changes to avoid any other neutrotoxins: no
Have you tried any thyroid specific treatments: dont have thyroid problems full cardiac test answered that
Your theories or comments:
Are we missing any important questions:

 

12/17/2009
First Name: kellie
Age: 33
Male or Female: female
City: conway
State/Province: ar
Country: usa
How long have you lived there: 2 years
Where were you born: louisiana
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: secretarial
How has Fibro affected your ability to work: can not sit up for long periods of time, lower back pain is crippling, pains in my leg leave me unable to walk at times, hands start hurting so much I can't even pick up a pen to write, or pick up a glass just to take a sip, days so severe i can't drive, my short term memory is getting worse, i'm not someone that anyone can count on anymore because the pain gets so bad that there have been many, many times i would have to let them down because i was in too much pain. i have scoliosis and ddd, and because of the fibro, the pain associated with the ddd feels 10 times worse, severe pain
How has Fibro affected your life: i feel like i am a burden to my family because i can't work anymore, i have to depend on them for pretty much anything and everything, i have to deal with disappointing my loved ones because i can never go out and do anything anymore, friends have stopped calling me and i never seem to call them back, but sometimes my hands, legs, and back keep me from being able to get to the phone and when i do answer i can't hold the phone long enough to really carry on any conversation because my hand will cramp up,my back will spasm out, neck gets stiff, ears start to hurt
What were your first symptoms: delayed reaction to pain stimulus, sharp pains in lower back and legs, insomia, rocking my leg back and forth all the time
Your age at onset of symptoms: off and on until i was 30, then progressively got worse
How fast was your rate of decline:
What are your current symptoms: pain in legs, back, hands, neck, head, knees, insomia, anxiety, mood swings
Number of years since you developed symptoms of fibromyalgia: since childhood
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 3 or 4 years
Describe the extent of your brain fog: as of now, worse than ever. sometimes can take me a minute before i can answer a direct question becuase for a moment my mind just wonder off or goes blank. I could get off the couch with intentions of going to do something, but before I even stand up, i forget why i was getting up. I can be told something and with in minutes, forget about it. everyone finds me repeating my self constantly, i write reminders for myself all of the house and will still forget.
Estimate number of doctors you have seen for Fibro related symptoms: 3
Do your doctors tend to focus on all your Fibro symptoms: now they do
Do your doctors treat your symptoms individually or collectively: individually
Describe your experience with doctors: some were mean, some indifferent, and some that really seemed to care
What remedies or medications have you tried: heating pad, hot baths, nucynta, talwin, ultram, doracet,vicodin, flexeril, hydrocodone, klonopin, halcion, lyrica, lidocaine gel, adderall
What makes you feel better: heat
What makes you feel worse: cold, walking, sitting up too long, standing 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:
Have you tried any thyroid specific treatments:
Your theories or comments:
Are we missing any important questions:

 

12/13/2009
First Name: sandra
Age: 46
Male or Female: female
City: pattaya
State/Province: huai yai
Country: thailand
How long have you lived there: 6 months
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: yea
What is Your Line of Work: riding therapist,reiki master
How has Fibro affected your ability to work: stiff muscle/bones feeling very tired all the time
How has Fibro affected your life: a little bit
What were your first symptoms: muscle problems and tired
Your age at onset of symptoms: 30
How fast was your rate of decline:
What are your current symptoms: as above
Number of years since you developed symptoms of fibromyalgia: 10
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: 0
Do your doctors tend to focus on all your Fibro symptoms:
Do your doctors treat your symptoms individually or collectively:
Describe your experience with doctors:
What remedies or medications have you tried: on usana supplements
What makes you feel better: heat
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: tried
Have you tried any thyroid specific treatments: checked out and fine
Your theories or comments:
Are we missing any important questions:

 

12/12/2009
First Name: Denise
Age: 42
Male or Female: female
City: Stockton
State/Province: CA
Country: USA
How long have you lived there: 42 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: teacher
How has Fibro affected your ability to work: It hasn't really, I just deal with the pain
How has Fibro affected your life: It makes it hard to fulfill daily tasks. I just deal with the pain.
What were your first symptoms: Bone pain
Your age at onset of symptoms: 35
How fast was your rate of decline: ?
What are your current symptoms: Bone pain, memory loss, weight gain
Number of years since you developed symptoms of fibromyalgia: 7
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 2
Describe the extent of your brain fog: Sometimes I can't remember is I did something and have to check and see if I had.
Estimate number of doctors you have seen for Fibro related symptoms: 1
Do your doctors tend to focus on all your Fibro symptoms: I was diagnosed about 7 years ago, but I did not for go any treatment.
Do your doctors treat your symptoms individually or collectively: none at all
Describe your experience with doctors: I do not even talk about it.
What remedies or medications have you tried: Dietary supplements: Noni, Xango
What makes you feel better: Drinking the supplement frequently
What makes you feel worse: Not using the supplements
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: no
Have you tried any thyroid specific treatments: no
Your theories or comments:
Are we missing any important questions:

 

12/10/2009
First Name: Lisa
Age: 61
Male or Female: Female
City: St. Louis
State/Province: Missouri
Country: USA
How long have you lived there: 40 years
Where were you born: Baton Rouge, La
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: yes, with a lot of difficulty
What is Your Line of Work: Information Tech professional
How has Fibro affected your ability to work: Decreased ability to concentrate and stay on task;extreme fatigue, pain and lack of interest in general life processes;numbness and tingling on the right side of the body, intense joint and muscular pain; poor sleep patterns and extremely high blood pressure
How has Fibro affected your life: Difficulty with memory and general brain fog; cannot perform basic tasks without feeling exhausted; vacillate between anxiety and depression with unexplained periods of both
What were your first symptoms: Joint and muscular pain; extreme fatigue
Your age at onset of symptoms: 53
How fast was your rate of decline: Moderate, but sped up considerably after two automobile accidents in 2002 and 2007
What are your current symptoms: Poor concentration,difficulty with memory,extreme fatigue, extreme muscular and joint pain,numbness and tingling in the upper and lower extremities; poor sleep patterns and extremely high blood pressure that has not been brought under control after using various medications, vertigo and balancing problems
Number of years since you developed symptoms of fibromyalgia: 8
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 6
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: They don't seem to be interested in looking at the entire illness; just prescribing medication for individuak symptoms
What remedies or medications have you tried: Over the counter pain medications
What makes you feel better: Sleep when I'm able to get it; other than that....nothing
What makes you feel worse: Almost any exertion in performing basic tasks
Have you tried avoiding fluoride in your diet: No
If so, which sources of fluoride: N/A
Have you made dietary changes to avoid any other neutrotoxins: No
Have you tried any thyroid specific treatments: On synthroid for removal of goiter on left thyroid
Your theories or comments: I have not taken some prescribed medications because the side effects would have further impaired my ability to work.
Are we missing any important questions: No

 

12/09/2009
First Name: STEVE
Age: 36
Male or Female: MALE
City: KILLARNEY
State/Province: MB
Country: CANADA
How long have you lived there: 6 YRS
Where were you born: MANITOBA
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: MANAGER OF FERTILIZER BUSINESS
How has Fibro affected your ability to work: YES
How has Fibro affected your life: YES
What were your first symptoms: SORE NECK, BACK, THEN LEGS AND HIPS BECAME VERY SORE WITH FATIGUE
Your age at onset of symptoms: 29
How fast was your rate of decline: FARELY SLOW THEN MORE RAPID
What are your current symptoms: SORE EYES, FATIGUE, SORE NECK BACK AND LEGS, BRAIN FOG
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: 3
Describe the extent of your brain fog: DIFFICULTY REMEMBERING WORDS, NAMES
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: very poor, i was told that only overweight women get this, i am 6'3 190 lbs, always active. i think most of them are full of xfe0u0
What remedies or medications have you tried: ambrotose, magnesium, paxil, chinese meds, high ph water, sleep anea machine
What makes you feel better: nothing
What makes you feel worse: overexertion, lack of sleep
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: no
Have you tried any thyroid specific treatments: no
Your theories or comments: i believe that anxiety is partially what brought this on for me, excess stress in job and life
Are we missing any important questions:

 

12/09/2009
First Name: Mary
Age: 66
Male or Female: female
City: Richmond
State/Province: VA
Country: USA
How long have you lived there: since 1981 or 28 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: no
What is Your Line of Work: was secretary
How has Fibro affected your ability to work: Medical retirement in 2002
How has Fibro affected your life: No life. Few friends. No interest in participating.
What were your first symptoms: IBS, sleep apnea, painful joints, depression, fibro-fog, CFS,
Your age at onset of symptoms: IBS at 28; depression at 37; sleep apnea at 58
How fast was your rate of decline: Knee trauma with arthroscopy in 2001 seemed to precede increased symptoms and disability which led to medical retirement a year later.
What are your current symptoms: All FMS symptoms have been increased to all the time with no breaks. Require knee replacement soon. Seeking lap band to lose weight before knee surgery.
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: 10+
Describe the extent of your brain fog: Forget important events even when reminded 4-6 hours before. Short-term memory has been affected.
Estimate number of doctors you have seen for Fibro related symptoms: 6 to 7
Do your doctors tend to focus on all your Fibro symptoms: No
Do your doctors treat your symptoms individually or collectively: Individually
Describe your experience with doctors: My PCP and my pain management doctor has helped the most.
What remedies or medications have you tried: Vioxx, Mobic, Flexeril, Cymbalta, Ambien, tramadol,
What makes you feel better: they all help; PT and water
What makes you feel worse: not taking them. Too much exertion.
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride: I haven't checked to see if the county water has it.
Have you made dietary changes to avoid any other neutrotoxins: No
Have you tried any thyroid specific treatments: I take synthroid which my Dr. just increased from .88 mcg to 1.0 mcg.
Your theories or comments: I know that sugar increases the pain. I'm hoping that the weight loss surgery (lap-band) which I expect to get in January will help me lose weight. Then, I will get a new knee a few months later which should help my mobility.
Are we missing any important questions: You didn't mention being overweight. I wonder how much it actually affects FMS symptoms. Some persons I've spoken with have not experienced a lessening of FMS symptoms. My fear is that the trauma of surgery will increase mine, but I don't think it could get worse.

 

12/08/2009
First Name: Minnie
Age: 55
Male or Female: female
City: rogers
State/Province: arkansas
Country: usa
How long have you lived there: 33 years
Where were you born: kansas 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: document control/quality assurance tech
How has Fibro affected your ability to work: yes
How has Fibro affected your life: my fingers are painful when i type or use tools like pliers or cutters
What were your first symptoms: some parts of my body hurt when touched. example rub hands together the pain is like someone burnt you or hit you.
Your age at onset of symptoms: 54 yr
How fast was your rate of decline: modirate
What are your current symptoms: pain in middle finger and ring finger right hand. last summer it was ring finger on left hand went away after several months.
Number of years since you developed symptoms of fibromyalgia: 2 yr
Do your symptoms include brain fog: not sure what is brain fog
Number of years since you developed the brain fog: not sure
Describe the extent of your brain fog: not sure
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: no
Describe your experience with doctors: wants to treat diabetes first then other
What remedies or medications have you tried: ovc drugs for pain
What makes you feel better: not really anything except not using hands
What makes you feel worse: typing
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride: just in 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: this is not carpel tunnel had that not the same.
Are we missing any important questions: no

 

12/08/2009
First Name: Stephen
Age: 37
Male or Female: Male
City: Jamison
State/Province: PA
Country:
How long have you lived there: almost 2 years
Where were you born: Levittown, PA
Is this the first time you have taken our questionnaire: YES
If not, why are you returning:
Are you still working: Yes, but barely
What is Your Line of Work: Accountant
How has Fibro affected your ability to work: Hugely, I can only do the bare minimum if that, major fibrofog and lightheadedness
How has Fibro affected your life: No sex life, no social life, loss of friends
What were your first symptoms: lightheadedness, head beating almost like my heart when exercising, pressure in ears
Your age at onset of symptoms: 27
How fast was your rate of decline: Fairly slow...this started in 1999 but slowly got worse and is much worse in 2009.
What are your current symptoms: Lightheadedness, pressure in ears, fatigue, muscle and nerve pain, headaches, IBS with belching and bloating, no sex drive, no work drive, cold hands and feet.
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: gotten worse in the last 5 years
Describe the extent of your brain fog: Can't mentally focus on anything, lose my words when speaking, get lightheaded the more I speak. It's pretty bad. Have trouble having conversations with people. Forget things.
Estimate number of doctors you have seen for Fibro related symptoms: 25-30
Do your doctors tend to focus on all your Fibro symptoms: Different approaches by different doctors. Been on a ton of supplements and medicines.
Do your doctors treat your symptoms individually or collectively: Same as above.
Describe your experience with doctors: A few doctors have upset me by suggesting stress as a cause or that my stomach problems were in my head. Most just have loaded me with supplements that haven't worked and have cost a lot of money. Neurologists couldn't find anything.
What remedies or medications have you tried: Too many antidepressants and sleep medicines to list. Ambien, Lunesta, Klonopin, Trazadone, Neurontin, Cymbalta, Limbitrol, Effexor..and probaby 10 more
What makes you feel better: Klonopin helps a little with sleep or calming my stomach, but that's about it. All medicines had side effects.
What makes you feel worse: Most of these medicines drugged me and made my brain fog 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: I drink tons of water and eat lots of fruits and vetetables..a lot of salads.
Have you tried any thyroid specific treatments: Yes
Your theories or comments: I feel I lack oxygen to the brain...I think CMV virus broke down my immune system over time, but that my main problem is my brain isn't getting enough oxygen. I have trouble indoors, where there is less oxygen, when there is more people. I can't talk or sing long or take deep breaths..these make me more lightheaded.
Are we missing any important questions: NO.

 

12/05/2009
First Name: Shawn
Age: 41
Male or Female: male
City: la grande
State/Province: oregon
Country: usa
How long have you lived there: 7 years
Where were you born: Asoria Oregon
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, delivery
How has Fibro affected your ability to work: Yes,
How has Fibro affected your life: I have dificulty moving, concentrating, lifting, the headaches I get are a kiler, there are times when I hurt so bad I can not even stand up, I have to crawl to get to the bathroom in my own house when it is this bad. I hate going out in public where people can see how much pain I am in which is mostly constant. I get pain that shoots through different areas of my body, when it shoots through my legs I sometimes loose my ablilitie to stay standing.
What were your first symptoms: Pain in shoulders and arms as well as kneck area, some numbness in arms but all nerve conduction testing came out with no problems, severe headaches, and IBS.
Your age at onset of symptoms: not sure about 22
How fast was your rate of decline: it gets faster every year and nothing really seems to help. Physical thearapy provides somerelief, but nothing seems to work.
What are your current symptoms: Whole body muscle and skeletal pain Aching Disturbed sleep patterns Fatigue Morning stiffness Specific tender and painful areas of the body when pressure is applied Depression Recurrent headaches Tender lymph nodes Bowel or bladder disturbances Sensitivity to heat or cold Anxiety Gastrointestinal disturbances Dizziness Occasional racing heart beats Decreased coordination Allergies Irritable bowel syndrome Temporal mandibular joint dysfunction this about covers it.
Number of years since you developed symptoms of fibromyalgia: not sure used to blame most on drinking but I guess about 19 to 22 years
Do your symptoms include brain fog: yes at times
Number of years since you developed the brain fog: cant remeber for sure
Describe the extent of your brain fog: variable, comes and gos but sometimes I cant not even remember some I just said to repeat it.
Estimate number of doctors you have seen for Fibro related symptoms: 8
Do your doctors tend to focus on all your Fibro symptoms: Not all no, each one has a differrent group they like
Do your doctors treat your symptoms individually or collectively: a mix of both most just focus on the pain and thats it.
Describe your experience with doctors: Terrible, I think in my area most doctors are idiots, especially since 3/4 of the doctors I see are Veterans association doctors.
What remedies or medications have you tried: I can not rember atll of them, 6 different types of pain meds, muscle relaxers, anti depressents, anti inflamitories, physical therapy, heat cold
What makes you feel better: usually heat does, or sometimes lying flat on my back, with all of the curatains shut so no light or noise. The best mix of pills I had where hydrocodone with soma and tordol, this mix made me feel good, but only temporary so I dont use them Hate to many drugs.
What makes you feel worse: usually cold, but It always varies sometimes just waking up I feel worse, it has no rhyme or reason.
Have you tried avoiding fluoride in your diet: yes
If so, which sources of fluoride: all i could think of
Have you made dietary changes to avoid any other neutrotoxins: yes, I even do my own garden now, and purifie all of my water no help
Have you tried any thyroid specific treatments: no
Your theories or comments: I think that we really need to figure this disease out, and cure it.
Are we missing any important questions: Yes why are VA doctors so lazy about stuff, here take these pills and come back in six months to a year.

 

12/05/2009
First Name: Valerie
Age: 55
Male or Female: Female
City: Culloden
State/Province: WV
Country: USA
How long have you lived there: 6 years
Where were you born: Texas 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: Pet grooming
How has Fibro affected your ability to work: It limits the amount and size of pets I can take in for grooming and severely limits my income capacity due to these restrictions
How has Fibro affected your life: Made me into a loner and been the cause of many hours of research an thousands of dollars wasted in trying to find help through doctors
What were your first symptoms: Fatigue and weight gain, tendinitis
Your age at onset of symptoms: 19
How fast was your rate of decline: Slow as was treated wiht Armour thyroid for first three years then steady decline after switched to Synthroid.
What are your current symptoms: Tendinitis that comes and goes, muscle pain and weakness, frequent headaches, some Fatigue
Number of years since you developed symptoms of fibromyalgia: 32
Do your symptoms include brain fog: Not any longer since T3 treatment
Number of years since you developed the brain fog: 32
Describe the extent of your brain fog: Have nearly burned my house from forgettign things onthe stove, gotten lost and forgotten where I was driving, 1000's of times forget why I wentinto a room, no concentration to read, gave up books, Gave upo crocheting as I simply could not figure out how ot do it.
Estimate number of doctors you have seen for Fibro related symptoms: 25+
Do your doctors tend to focus on all your Fibro symptoms: NO, they tend to wrte them off as aging since I was in my 30's.
Do your doctors treat your symptoms individually or collectively: Latest doctor did, but I self treat mostly,.
Describe your experience with doctors: LOUSY. They gave me 2 years ot live when I was 40 due ot Cpongestive Heart Failure, but I am still here no thanks to them.
What remedies or medications have you tried: Armour thyroid, Synthroid, Hydrocortisone, Prednisolone, Medrol, Florinef, IGF-1 injections, Growth Hormone Injections, Potassium supplements, Magnesium suppl,emnts, was on four BP meds, not on any now, Skelaxin, other muscle relaxants I can;t remember
What makes you feel better: T3 treatment! Potassium, Krill oil
What makes you feel worse: T4 only
Have you tried avoiding fluoride in your diet: Absolutely!
If so, which sources of fluoride: I avoid pesticides entirely in my poet grooming business, I only drink RO filtered water and try to avoid fluorinated drugs
Have you made dietary changes to avoid any other neutrotoxins: no
Have you tried any thyroid specific treatments: ALl of them
Your theories or comments: I have been sayign for years fluoride an chlorine both have alot to do with this issue. My pets only get RO water and I ahve several of them afflicted too.
Are we missing any important questions: Adrenal involvement.

 

12/03/2009
First Name: Dianne
Age: 48
Male or Female: Female
City: Wilmington
State/Province: Delaware
Country: USA
How long have you lived there: 19 Years
Where were you born: Philadelphia, Pennsylvania
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: when I first awake I have an ungodly attack that it takes me a couple of hours to start my day. As the day progresses I experience several attacks throughout and at times it is too hard to cope.
How has Fibro affected your life: have trouble staying asleep, have mood swings; bi-polar disorder symptoms and would like to live without taking so many medications to cope with the agonizing pain day in and out
What were your first symptoms: aches and pains in the joints
Your age at onset of symptoms: 40
How fast was your rate of decline: rapidly
What are your current symptoms: aches and pains in the joints
Number of years since you developed symptoms of fibromyalgia: 8 years
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 8
Describe the extent of your brain fog: memory loss; forgetful
Estimate number of doctors you have seen for Fibro related symptoms: 5
Do your doctors tend to focus on all your Fibro symptoms: yes
Do your doctors treat your symptoms individually or collectively: individually
Describe your experience with doctors: most of them had no clue on treatment for the symptoms; until my recent doctor came about, I follow up with him once a month to see how my progression is coming along from the medications prescribed for the symptoms
What remedies or medications have you tried: percocet and tramadol
What makes you feel better: both
What makes you feel worse: neither
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; synthroid (levothyroxin)
Your theories or comments: am tired of living with the agonizing pain on a daily basis; would love to live without fibromyalgia if possible through natural herbs.
Are we missing any important questions:

 

12/03/2009
First Name: Marie
Age: 65
Male or Female: Female
City: Detroit
State/Province: Michigan
Country: United States
How long have you lived there: 40 years
Where were you born: Augusta, Georgia
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: Fatigue has made working a difficult chore.
How has Fibro affected your life: Fatigue has caused me to create ways to survive and get things done.
What were your first symptoms: tremors, fatigue, muscle pain, joint pain, palpitations, migraines, unbalanced gait, numbness, dropping things
Your age at onset of symptoms: I do not know.
How fast was your rate of decline: My symptoms increased with age.
What are your current symptoms: Fatigue, muscle pain, joint pain, tingling, palpitations, migraines, unbalanced gait, tremors, eye symptoms, poor short term memory, cognitive loss, dropping things
Number of years since you developed symptoms of fibromyalgia: I do not know.
Do your symptoms include brain fog: Yes.
Number of years since you developed the brain fog: I do not know.
Describe the extent of your brain fog: I cannot think of words I want to say. I almost always cannot communicate effectively.
Estimate number of doctors you have seen for Fibro related symptoms: Three
Do your doctors tend to focus on all your Fibro symptoms: It's difficult to explain on what my doctors focus.
Do your doctors treat your symptoms individually or collectively: Individually
Describe your experience with doctors: Doctors do not tell me the true results of my tests. I found this out when I obtained test results. Doctors do not take me seriously.
What remedies or medications have you tried: The Elavil I take for depression helps me with pain.
What makes you feel better: Imitrex, excedrine, elavil, klonopin, trilafon
What makes you feel worse: Sugar
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: I avoid migraine headache triggers
Have you tried any thyroid specific treatments: My thyroid has been removed. I take synthroid.
Your theories or comments: I think I have inflammation throughout my body, including my head.
Are we missing any important questions: My neurological tests show problems with my nervous system.

 

12/03/2009
First Name: mandy
Age: 41
Male or Female: female
City: liverpool
State/Province: merseyside
Country: united kingdom
How long have you lived there: all my life
Where were you born: liverpool
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 have been a carer, volunteered in mental health, ran support groups and was a student.
How has Fibro affected your ability to work: I can barely function. Some days I cant get out of bed and I am exhausted, suffer from memory lapses, incontinence.
How has Fibro affected your life: My life has gone ( I dont mean to sound depressive) but the person I knew has gone. I am just a shell of the person I once was.
What were your first symptoms: Pain in the lower back and fatigue
Your age at onset of symptoms: I am not sure if this started in my teens?
How fast was your rate of decline: It was about 12-14months
What are your current symptoms: chronic pain, exhaustion and fatigue. Tinnitus, (24hrs) irritiable bowel syndrome, bladder stress and urge incontinence. headaches, memory lapses and forgetfulness, dizziness and depression.
Number of years since you developed symptoms of fibromyalgia: This episode has been 4years now
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: about 2 years
Describe the extent of your brain fog: I used to remember everything. It was a standing joke that I had the memory of an elephant. I have to write everything down appointments, when to pay bills and even then I forget. I cannot retain the information like I used too either.
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:
Describe your experience with doctors: A lot od doctors do not understand or even know of this condition. I saw a rheumotologist who said it was all in my head and I needed to see a psychiatrist. I have a helpful doctor but not clued up about fibromyalagia.
What remedies or medications have you tried: Amitriptiline. Gabepentin, cymbalta (these I am still currently taking) homoapathy treatment cal carb 4 at present too. Bowen technique.
What makes you feel better: warmth and rest
What makes you feel worse: cold, damp conditions, excessive heat, stress, over exertion and tiredness
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 cut out meat years ago
Have you tried any thyroid specific treatments: bo
Your theories or comments: I read that a high percentage of women with this condition have been abused as children. I have suffered from abuse and abusive situations throughout my life. That have caused serious pain and stress over the years.
Are we missing any important questions: I cannot think of any more questions I hope my input has helped in some way,

 

12/03/2009
First Name: Rebecca
Age: 43
Male or Female: female
City: spartanburg
State/Province: sc
Country: usa
How long have you lived there: in the usa all my life
Where were you born: nebraska
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: dsabled
How has Fibro affected your ability to work: im disabled.i cant work. i cant even sit or stad for long periods and as youll see i cant spell well anymore either
How has Fibro affected your life: well.. i was a responsible resilliant 3 figures a yr upper working class woman. until 3 yrs agonow i barely make measly rent. so id say it has devestaed my life
What were your first symptoms: dizzy spells .forgettting the simplst words objects etc..sudden back pain
Your age at onset of symptoms: 39 ish
How fast was your rate of decline: im 43 now and each yr the diagnoises get worse and the more dysfunctions and diseases get added to the back of my name. i got more initials follwing my name then a doctor
What are your current symptoms: HEAD; Numbness and tingling of the head left jaw locks n clicks constant nose runny head is extremly heavy left ear hurts migraines get lightheaded fall out( wake up on the floor) dizzy spells forgetful trouble understanding what people say to me alot of times(confusion) trouble remembering words HEART; Sharp pain behind the breast-bone,after playing or stress or to much food. races hard time breathing feels like its runny away itll jump and i can feel it then i get dizzy whole chest will hurt for days on end sometimes BODY; Vertigo gassy..burping a lot arms are heavy hands feet legs crinkle up. chest cramps up legs cramp up fingers go numb feet are freezing hands are always cold to the touch as are feet sever extreme back pain severe extreme neck pain severe extreme shoulder pain forget where im going or why im going bouts of fatique if i have a good day n work out the pain sits on my unbelievable pain for a week or so.. mostly i cant move constant vaginal infections every nerve feels like its a ball of pain every bone is so sore some days my knees hurt back spasms left ear hurts a lot of days bladder infections( constant yeast in urine) cold spots like round cold rag balls just happening on shouldes top of thighs so far fall down a lot drunk walking awful joint pain extreme panic attacks EyeS; eye vision blurry dark spots cant see as well lights cold eyelids twitchin eyes dry eyes
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: imma ahve to go with 3
Describe the extent of your brain fog: do you know how frustrating it is to not remmebr a color? your kids anme. a street why you left the house? how to spell.a fruit..what your even doing and why your doing it?
Estimate number of doctors you have seen for Fibro related symptoms: 13
Do your doctors tend to focus on all your Fibro symptoms: no.. they seem to keep adding on new initials. ddd. ibs. tmj.gad. gbs.dss..ill spel that one out. dysregulation spectrum sundrum..lovely huh
Do your doctors treat your symptoms individually or collectively: i like to stay as holistic as possible. so id say i let them offer me waht they will
Describe your experience with doctors: well waht can we say about doctors in the good ole usa.. god bless um they try
What remedies or medications have you tried: wel. ive tried some. lyrics, i crashed my car on. cymbalta a screaming fit of a pill . valliam.. sever migraines..loritabs.. awful tummy aches
What makes you feel better: in all actuality i never feel better per say. tho i do find that a tanning bed which heats up my enire core will offer me some relieve for muscle aches. mostly i sit at a 8 in pain daily n just know this is mmy challenge in life.. ive also lost a massive amount of weight.. tho no one knows why. i woud of hoped it would of helped alleviate some of the pressure. it did not
What makes you feel worse: COLD..to much heavy food. stress.working out causes me to be in bed for a week. whihc stinks!.its like fighint the devil ya got to build ya muscle mass back up and in so doing you cause yourself greater pain.
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride: i only drink spring water. if i had to guess i think the only flouride i have si in my toothpaste
Have you made dietary changes to avoid any other neutrotoxins: i dont eat sugar or caffeine rarely red meat.worse thing i think i do to my body is smoke and even that is only like 5 to 7 a days.
Have you tried any thyroid specific treatments: my thyroid is fine..alst they looked
Your theories or comments: humm my therois...i think fibromyagia is a fall back location to something im finding so many other people are aquiring. i feel no one is truly looking at the actual cause n affect like a birth control pill etc.. my mother has ms. my oldest son has same heart issues as me. seems alot of people wiht same symptoms all over the wolrd and yet a thing like fibromyalgia is the culprit dpnt string right on my clothes line. i also believe thsi all stems from the spinal system and if we can find something to regenerate the spinal recovery system. it might fix it.if we can get a imune intervenous for gbs why cant we get say bone marrow or placenta put on our spins?..hows that for a dark ugly thought
Are we missing any important questions: maternal hystory.. i say this cause i never knew my mother so to find out our symtoms are the same now that i know her.. yanno where im going wiht that.

 

12/01/2009
First Name: Jessica
Age: 30
Male or Female: female
City: San Antonio
State/Province: TX
Country: USA
How long have you lived there: 30 years
Where were you born: Belgium
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: education
How has Fibro affected your ability to work: I call in sick A LOT; mainly because I am just too tired or in too much pain to get out of bed
How has Fibro affected your life: I HAVE NO LIFE!
What were your first symptoms: Fatigue and muscle aches and pains
Your age at onset of symptoms: 25
How fast was your rate of decline:
What are your current symptoms: Fatigue, exhaustion, dizziness, confusion (brain fog), severe muscle aches and pains, always sleepy but don't sleep well, hurts when I am touched (even just a hug)
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: 2
Describe the extent of your brain fog: It kind of feels like I am out of my body for a second. I feel like I just can't process any thoughts or make any connections. I may be in the middle of a conversation and complete forget what we were discussing. It is very difficult to describe and even more difficult to cope with
Estimate number of doctors you have seen for Fibro related symptoms: 5
Do your doctors tend to focus on all your Fibro symptoms: The fatigue and exhaustion mainly
Do your doctors treat your symptoms individually or collectively: Individually
Describe your experience with doctors: With the exception of the last one they have all sent me home on antidepressants
What remedies or medications have you tried: Cymbalta, diet,pain pills, lyrica and fluexotine
What makes you feel better: Sleep, warm baths, hot and cool compresses
What makes you feel worse: Extended periods of activity or heightened levels of stress
Have you tried avoiding fluoride in your diet: yes
If so, which sources of fluoride: tap water, RXs, tootpastes, etc.
Have you made dietary changes to avoid any other neutrotoxins: yes
Have you tried any thyroid specific treatments: no
Your theories or comments: I am miserable and if something doesn't change, I am not sure where I will end up. I feel nearly everyone thinks it is in my head and I do not know I will ever be a successful professional, wife or mother if I continue to feel this way.
Are we missing any important questions: NA

 

 

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