Fibromyalgia Questionnaire & Results

Latest Update: 02/13/2012

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25 QUESTIONNAIRE COMPLETED DATA FORMS FOR July 2010

07/30/2010
First Name: sherrie
Age: 48
Male or Female: female
City: coon rapids
State/Province: mn
Country: usa
How long have you lived there: 25 yrs
Where were you born: san iiego
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: staffing
How has Fibro affected your ability to work: missed days from pain and memory problems
How has Fibro affected your life: hard to function...misery
What were your first symptoms: back and neck pain
Your age at onset of symptoms: 43
How fast was your rate of decline: rapid
What are your current symptoms: pain alover neck, back,hips and fibro fog
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: 5
Describe the extent of your brain fog: cant remeber simple things and names of people i used to know
Estimate number of doctors you have seen for Fibro related symptoms: 15
Do your doctors tend to focus on all your Fibro symptoms: no
Do your doctors treat your symptoms individually or collectively: colletively
Describe your experience with doctors: they don't help much..they've given up
What remedies or medications have you tried: lyrica, cymbalta, savella
What makes you feel better: vicoden
What makes you feel worse: bad weather
Have you tried avoiding fluoride in your diet: yes
If so, which sources of fluoride: everything
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:

07/30/2010
First Name: Sue
Age: 57
Male or Female: Female
City: Everett
State/Province: Washington
Country: USA
How long have you lived there: 21 years
Where were you born: Bremerton, WA
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: NO
What is Your Line of Work: Was an insurance claims adjuster, before SEVERE symtoms made me stop, My Dr. told me I couldn't work anymore, kept getting sick
How has Fibro affected your ability to work: Worked for 5 + years,with it and HAD to quit, under Doctors orders.
How has Fibro affected your life: My life used to be busy, my house and garden I was proud of.I'm not "proud" anymore. Embarassed, can't keep up. Pain and exhaustion are daily symtoms. No short term memory anymore, brain fogs, Trying to keep up on a 6th of my income when working.
What were your first symptoms: Pain that would NOT go away. Just could not get out of bed in the morning to go to work.No matter how much I slept always, felt exhausted.Severe headaches.
Your age at onset of symptoms: 32
How fast was your rate of decline: Quickened as time went on.
What are your current symptoms: Same but not out in public so not as many colds, viruses. Have developed allergies, sinusitis,sllep apnea, pain headaches, constant Stuffiness,body pain, trouble sleeping,
Number of years since you developed symptoms of fibromyalgia: 32
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 10-12
Describe the extent of your brain fog: Very forgetful, always used to be early, now am always late.Have trouble saying, grasping the right word when speaking.
Estimate number of doctors you have seen for Fibro related symptoms: 4
Do your doctors tend to focus on all your Fibro symptoms: See just 1 now.
Do your doctors treat your symptoms individually or collectively: Collectively
Describe your experience with doctors: One, my old Primary care doctor does not believe in it. It was because of him Hartford Insurance, terminated my disability claim they had been paying me since 1997.My current Rheumatologist is great, he truly listens and tries to help
What remedies or medications have you tried: Several, RX and Natural. Methadone & Ritalin, seem to help me the most. Celbrex, but can't afford to buy it.Sometimes , I get samples.
What makes you feel better: not much, rest, pain medications
What makes you feel worse: Stress, over doing when I DO feel good.
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: some, but it's more expensive to buy, organic etc, so can't do too much.
Have you tried any thyroid specific treatments: no
Your theories or comments: too many, Epstein barr? Does longterm infection cause. Any new treatments
Are we missing any important questions:

07/28/2010
First Name: Paula
Age: 44
Male or Female: Female
City: Abilene
State/Province: TX
Country: US
How long have you lived there: 18 years
Where were you born: Gadsden, AL
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: yes
What is Your Line of Work: DOD-Government Employee
How has Fibro affected your ability to work: I currently have had to take FMLA leave due to being unable to perform my job. In the past 4 yeas, I have exhausted all my sick leave as well as Vacation annual leave due to Fibromyalgia.
How has Fibro affected your life: Since May 2010 when I finally received a firm diagnosis of Fibromyalgia, I sometimes feel as if I am in mourning of the death of a loved one. Although I have read and heard that while the symptoms and pain intesity varies, that it is not a disease that causes death...even though it occasionally will make you feel that way. My whole life has turned upside down!!
What were your first symptoms: From January 2006 to February 2010 I had always had pain, rocking of the legs, fatigue, and insominia. I assumed it's what all menopausal women went through and I was just getting older. I had heard my Mom and Sister both discuss how they have Fibromyalgia via phone and emails, but since we live in two different states, I was never there to see their day to day struggles. It wasn't until one particularly "bad" day when I was talking to my sister and describing my symptoms that she told me I needed to be checked by a doctor.The symptoms I was having did not sound like just "growing old" or menopausal. I guess my worst pains at that time was pain that started in the left side at the back of my neck, down my shoulder and to my back and also the pain with my inner knees. I was unable to lay on my side in bed because I couldn't stand to have my inner knees touching.
Your age at onset of symptoms: 40, but not diagnosed until age 44
How fast was your rate of decline: From 2006 to 2008, I managed to still somewhat perform essentional functions of my job, but was having alot of absences at work. In 2008, my symptoms went from dull throb or aching, to constant pain that would last for DAYS at a time instead of hours. I started having more headaches, issues with diarrhea, EXTREME exhaustion and fatigue when I would get home from work; and major stress due to not being able to function to necessary standards at work. More irritable and "needy" with family and friends. Cognitive skills started declining. The two months before I implemented FMLA at work, I was absent at least 1 or more days each week. Instead of being an asset to the company, I felt I was more of a liability.
What are your current symptoms: Pain moves from day to day. My physical tolerance level is almost non-existant. My sleep disorder is still being reviwed. I have been in two sleep studies so far. Legs still rock and move. I have bouts of anxiety and depression due to how "useless" I sometimes feel; temperature sensitive. I have worked at the same company for 15 years...hope to retire from there, so, it's hard when you realize you can't "measure up" like you used to.
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: 2
Describe the extent of your brain fog: Very forgetful. I have left car/house keys on roof of car while I am doing errands, then completely freak out when its time to leave and the keys are not in my purse; getting directions is a nightmare; I misplace things...such as unloading dishwasher and placing dishes in refrigerator instead of cabinet; throwing untesils in garbage instead of placing in sink; forgetting appointments; work related passwords, etc
Estimate number of doctors you have seen for Fibro related symptoms: 2
Do your doctors tend to focus on all your Fibro symptoms: First doctor kept saying I had Costochrondritis...which I now know can be a symptom with Fibromyalgia. My current doctor, did a thorough blood work-up and extensive medical history.We are still on the "trial/error" rollercoaster ride with medications.
Do your doctors treat your symptoms individually or collectively: Individually
Describe your experience with doctors: I think the first doctor should have caught it long time ago. My current doctor believes that if he can just treat my sleep disorder, the the other symptoms will go away. He is as frustrated as I am about all the medications I have tried with no sucess.
What remedies or medications have you tried: Cymbalta; Lyrica; Xanax; Tramadol/Ultram; Mobic; Eltododac; Wellbutrin
What makes you feel better: Nothing so far has worked and I believe my stress from nothing working is counteracting everything. I'm on 3 medications that all have their own side effects and I am hyper-sensitive to those side effects.
What makes you feel worse: Stress, exertion, humid weather, temperature changes; and the MILLION side effects from the medications!
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: Yes. Weaning myself away from caffiene and sugar and absolutely NO asparatame.
Have you tried any thyroid specific treatments: No
Your theories or comments: I do as much as I am able to in order to bring awareness to Fibromyalgia. I think lack of research and the fact that they treat the symptoms (since they still don't know what causes Fibromyalgia and can only make assumptions) with medications designed for other diseases is something that needs to be remedied. The fact that Fibromyalgia is noted as being the "Invisible Disease" with no definitive medical or lab tests and that it does NOT cause death, seems to put it on the backburner as far as research goes.
Are we missing any important questions:

07/27/2010
First Name: Lesly
Age: 45
Male or Female: Female
City: Warner Robins
State/Province: Georgia
Country: USA
How long have you lived there: 6 months
Where were you born: Fort Worth, TX
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: construction administrative
How has Fibro affected your ability to work: no
How has Fibro affected your life: yes
What were your first symptoms: hip, arm, elbow, knee pain
Your age at onset of symptoms: 45
How fast was your rate of decline: quick
What are your current symptoms: okay, but have frequent flare ups
Number of years since you developed symptoms of fibromyalgia: less than one year
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 6 months
Describe the extent of your brain fog: cannot focus sometimes
Estimate number of doctors you have seen for Fibro related symptoms: 1
Do your doctors tend to focus on all your Fibro symptoms: back or neck pain from previous surgery
Do your doctors treat your symptoms individually or collectively: no, they treat the pain not the source
Describe your experience with doctors: not good at all. she did not listen to the extent of my symptoms and constantly interrupted me
What remedies or medications have you tried: doctor prescribed muscles relaxers, anti-inflammatory medication and pain medications
What makes you feel better: when I have a flare up, only pain medication helps but I know this is only masking the symptoms
What makes you feel worse: exercising when I have a flare up
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride: toothpaste only that I know of. I drink bottled water; no tap water except for cooking and bathing
Have you made dietary changes to avoid any other neutrotoxins: I'm a vegetarian so my diet is limited anyway, so no changes have been made. I did try to cut down on the caffiene intake
Have you tried any thyroid specific treatments: no
Your theories or comments: I'm going to see a pain specialist referred by my doctor but I'm leary b/c I don't need physical therapy. I need medication or supplements to treat the symptoms not pain medication or PT
Are we missing any important questions: none known

07/26/2010
First Name: Joan
Age: 64
Male or Female: Female
City: Barefoot Bay
State/Province: Florida
Country: USA
How long have you lived there: 24 years
Where were you born: Philadelphia, PA
Is this the first time you have taken our questionnaire: yes
If not, why are you returning: N/A
Are you still working: no
What is Your Line of Work: Just retired. My line of work has been that of special education. Functioned as an educational/pschological diagnostician, teacher of severe/profoundly handicapped pre-school childrwen and also as a Speech/Language Pathologist.
How has Fibro affected your ability to work: Yes. That is why I needed to retire.
How has Fibro affected your life: Yes. My optimum level of mobility has been affected. Therefore, I cannot perform household chores or physical activity at expected levels.
What were your first symptoms: Unexplained excruciating pain in various locations in the body.
Your age at onset of symptoms: 62
How fast was your rate of decline: gradual, but consistent
What are your current symptoms: *morbid and excruciating pain 24 hours a day *inability to stretch significantly enough to put on shoes or clean self sufficiently after toileting *reduced mobility in walking, climbing stairs, standing up after sitting
Number of years since you developed symptoms of fibromyalgia: @ 2 years
Do your symptoms include brain fog: No
Number of years since you developed the brain fog: N/A
Describe the extent of your brain fog: N/A
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: Individually
Describe your experience with doctors: Three of the doctors claimed it was a psychological problem.One medicated with a narcotic and there was no positive result. The 5th doctor treated me with massive dosages of Omega 3. It worked well but result in diarrhea symptoms resembling Chrone's Symdrome, so it was stopped. I have an appointment with a new doctor in 2 weeks that states he specializes in treting fibromyalgia. I am looking forward to this appointment
What remedies or medications have you tried: Omega 3, Lipitor, Advil, stretching exercises
What makes you feel better: the stretching exercises help a little. Also, playing the piano and organ gets my mind off the pain.
What makes you feel worse: I have been trying to identify the trigger, but have been unable to find it.
Have you tried avoiding fluoride in your diet: No. I had no idea that fluride was a contributing factor.
If so, which sources of fluoride: N/A
Have you made dietary changes to avoid any other neutrotoxins: I am obese due to glandular atrophy and the taking of steroids to assist my adrenal insufficiency. I am now on a Zone diet.
Have you tried any thyroid specific treatments: I take Synthroid as the thyroid is atrophied due to the lack of ACTH production and a pituitary gland that cannot be found per an MRI.
Your theories or comments: From my neck up, I am doing very well. I have a good attitude and continue to be happy. Emotionally, I feel like I am in my early 50's. Physically, I feel like I am in my upper 70's. Chronic fatigue, crippling pain, etc. are doing me in. However, I am committed to beating this thing. Constant prayer, research, good attitude and followed suggested strategies have led me to your information and survey.
Are we missing any important questions: I don't think so.

07/26/2010
First Name: bernadine
Age: 40
Male or Female: female
City: westland
State/Province: mi
Country: usa
How long have you lived there: almost my entire life
Where were you born: Detroit , 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: Social work/ Recreation Therapy
How has Fibro affected your ability to work: Unable to work
How has Fibro affected your life: Its definantly not what it used to be. I used to be a doer. Most of the time now I am a watcher, because I know what the outcome will befor days after.
What were your first symptoms: Quick onset. for a week I beleived something was wrong with my car. I couldn"t turn the wheel or bareley steer the wheel.
Your age at onset of symptoms: 29
How fast was your rate of decline: It hit all at once, fatigue, IBS, wide spread pain, memory problem(fog. It was so extreme for me, I belived i was dying or had a life threatening illness.
What are your current symptoms: all over pain in anything that moves, ibs, chronic fatigue, restless nights, waking up sore,sensitivity to light & sound. molting skin, brain fog. numbing in feet & hands, frequent headaches
Number of years since you developed symptoms of fibromyalgia: eleven, but at my first rhuematologists appointment, the doctor suspected fms. Many of her questions led me to believe I had had it way longer than I knew.
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: ten
Describe the extent of your brain fog: I have forgotten my immediate family's birthdays, drove to the store only to forget why, forgetting memories that i should never forget and having to be reminded of them, some are very recent. Once I'm reminded they are clear again.
Estimate number of doctors you have seen for Fibro related symptoms: 4
Do your doctors tend to focus on all your Fibro symptoms: not really, only one.
Do your doctors treat your symptoms individually or collectively: individually
Describe your experience with doctors: I've been lucky, I was diagnosed by a rhuematologist, after an e.r. visit. So upon Seeing new a new doctor I let them know immediately. I feel that few doctors are willing to actually fully treat the disease. I had one doctor, when I had moved to new area, (even with my records) tell me He didn't prescribe what i was on for meds because it had a high addiction rate. Even though it had taken a few years for my previous doctor to come up with a system that worked for me.
What remedies or medications have you tried: no caffiene, green tea, fish oil pills, Vicoden, extra caffiene, no red meats,whole grain diet, oxycodone, pamelor, cymbalta, paxil,trigger point injections, steroids
What makes you feel better: Some days nothing. Keeping a positive attitude( it could always be worse)Vicoden seems to help, marijuanna seemed to lessen symptoms, but made me tired.
What makes you feel worse: over doing it when I feel good, tylenol
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride: no
Have you made dietary changes to avoid any other neutrotoxins: no
Have you tried any thyroid specific treatments: no
Your theories or comments: About the flouride....since Iwas diagnosed, my teeth have been breaking off. I have very few left. wondering if there is a connection.
Are we missing any important questions: do you have teeth problems? Any skin irritations?

07/24/2010
First Name: Myranda
Age: 28
Male or Female: female
City: salisbury
State/Province: NC
Country: USA
How long have you lived there: 5 years
Where were you born: Statesville, NC
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: House Cleaning
How has Fibro affected your ability to work: I only work part time, I miss many days because, I'm in pain or sick to my stomach
How has Fibro affected your life: I can not get hing done like I used to, very scatter-brained can't seem to clear out clutter in house, In pain and sick 70% of the time. It is depressing not being able to do simple tasks when I'm sick and tired.
What were your first symptoms: Chronic back pain, fatigue, sick to stomach
Your age at onset of symptoms: 23
How fast was your rate of decline: I consider it to be fast. 28 now and its pretty bad
What are your current symptoms: Confusion, Fatigue, Stomach issues, pain,dizziness
Number of years since you developed symptoms of fibromyalgia: 5
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 3
Describe the extent of your brain fog: can't remember appts, what i did yesterday or even this morning, forget conversations, constantly loose things, feel lost in places that are familiar
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: she just fills prescriptions and thats it
What remedies or medications have you tried: Lyrica, Ultram, Gabapentin, Bentyl, elevil, ferratlet, goody powders
What makes you feel better: Ultram, goody powders
What makes you feel worse: Lyrica, gabapentin
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:

07/23/2010
First Name: Elizabeth
Age: 20
Male or Female: Female
City: Blackpool
State/Province: none
Country: United kingdom
How long have you lived there: 6 years
Where were you born: Blackpool
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: anything at the moment, am seeking to work in childcare in the future
How has Fibro affected your ability to work: Doctor has told me to only work up to 16 hours per week
How has Fibro affected your life: In so many ways. It's affected my physical and mental abilities. I feel so weak and often have to have afternoon naps just to keep my energy up. I have many symptoms, as I will describe further in other questions.
What were your first symptoms: Pain in whole of back and back of neck
Your age at onset of symptoms: 19
How fast was your rate of decline: Quite slow, over a period of about 9 months
What are your current symptoms: Muscle aches and pains, depression, insomnia, headaches, severe nausea, fatigue, hot and cold flushes, shakey hands, clicking bones in hands and feet, flu like symptoms, weakness, lack of appetite.
Number of years since you developed symptoms of fibromyalgia: 1-2 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: I say things wrong, forget simple things and sometimes really struggle to understand what someone is explaining to me.
Estimate number of doctors you have seen for Fibro related symptoms: 3
Do your doctors tend to focus on all your Fibro symptoms: It varies from doctor to doctor
Do your doctors treat your symptoms individually or collectively: Again, depends on the doctor
Describe your experience with doctors: Some good, some bad. It's all about finding a doctor that you feel comfortable with.
What remedies or medications have you tried: I currently take Fluoxitine for mt depression which I find to be very effective. Previously I have tried Naproxine and Amitriptyline.
What makes you feel better: Not much really, I'm still investigating alternative therapies and treatments.
What makes you feel worse: Bad 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: Just wish there was more that could be done to help sufferers.
Are we missing any important questions:

07/23/2010
First Name: Paola
Age: 38
Male or Female: mujer
City: Concepci�n
State/Province: Bio-B�o
Country: Chile
How long have you lived there: siempre
Where were you born: Rancagua

Is this the first time you have taken our questionnaire: si
If not, why are you returning:
Are you still working: no
What is Your Line of Work: dise�o, ventas
How has Fibro affected your ability to work: totalmente
How has Fibro affected your life: dolor cronico y cansancio
What were your first symptoms: tendinitis
Your age at onset of symptoms: 20
How fast was your rate of decline: 1 a�o
What are your current symptoms: dolor brazos, espalda, hombros, riguidez, mal dormir, gastropatia cronica
Number of years since you developed symptoms of fibromyalgia: 10 a�os aprox
Do your symptoms include brain fog: s�
Number of years since you developed the brain fog: 5 a�os
Describe the extent of your brain fog: solo en momentos de mayor tensi�n,a veces olvido las palabras y tambien las confundo
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: colectiva e individual
Describe your experience with doctors: en general mala, solo un m�dico me ha ayudado
What remedies or medications have you tried: medicamentos homeopaticos
What makes you feel better: practicar el sistema Isha
What makes you feel worse: tener muchas cosas pendientes que hacer
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: en mi caso pareciera tener esta enfermedad con la sobre carga emocional y la autoexigencia sin medida
Are we missing any important questions:

07/23/2010
First Name: Vicki
Age: 53
Male or Female: female
City: manchester
State/Province: nh
Country: usa
How long have you lived there: 18 yrs
Where were you born: cleveland ohio
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: no
What is Your Line of Work: manager of a fast food restaurant
How has Fibro affected your ability to work: yes, i can no longer stand for long periods of time. i have no energy or strength. i can be foggy.
How has Fibro affected your life: yes, i no longer do much around the house. if i do i pay for it for days. i am not able to do anything i love to do. it is so depressing.
What were your first symptoms: years ago i would hurt when my husband hugged me. he said i was crazy. now i know it was the onset
Your age at onset of symptoms: 35-38
How fast was your rate of decline: slow at first, quicker over the last 5 years.
What are your current symptoms: i am in pain everyday. if i wake up and it is a "good" day, i do what i can fast. whether it is to run to the store or to vacuum. then i am done for the day
Number of years since you developed symptoms of fibromyalgia: 18 or so i believe
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 1
Describe the extent of your brain fog: i can't remember how to spell at times...and i have always been a good speller. i don't remember peoples names.
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:
Describe your experience with doctors: only 1 and now i can no longer go. i am alone
What remedies or medications have you tried:
What makes you feel better: showers, sunshine. not too hot and not too cold. sitting in my recliner with my feet up.
What makes you feel worse: stress, mental or physical. cold, extreme heat, anytime i get anything wrong...headache, or a stubbed toe it is amplyfied.
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:

07/22/2010
First Name: Dianna
Age: 31
Male or Female: Female
City: Quincy
State/Province: Il
Country: United States
How long have you lived there: 31 years
Where were you born: Quincy, Il
Is this the first time you have taken our questionnaire: Yes
If not, why are you returning:
Are you still working: yes
What is Your Line of Work: I work 2 days a week as an Administrative Assistant, I am a college student and a mom
How has Fibro affected your ability to work: It has made me slow down, it's harder to stay focused due to pain or feeling out of it.
How has Fibro affected your life: Oh my...I am still dealing with the realization that I have it. My brain and body are not agreeing that I need to slow down. The pain interrupts my day and night, it changes my personality when it isn't under control. My muscles are sore all the time, I'm tired when I haven't done anything and when I do do something I tire very quickly.
What were your first symptoms: Pain in my arms, both sides
Your age at onset of symptoms: 30
How fast was your rate of decline: Within weeks my whole body hurt
What are your current symptoms: Constant body ache, tightness of muscles and painful trigger points. I am always wiped out, sleep poorly, I have GERD, headaches, but mainly it's the pain that consumes me.
Number of years since you developed symptoms of fibromyalgia: I have only had it for 5 months
Do your symptoms include brain fog: Yes
Number of years since you developed the brain fog: the past 2 months
Describe the extent of your brain fog: I feel stoned, out of it and I can't remember words, names of items, what I was doing or going to say. This is NOT how I normally felt before Fibro.
Estimate number of doctors you have seen for Fibro related symptoms: 2
Do your doctors tend to focus on all your Fibro symptoms: Some of my symptoms were due to Fibro and some where not...they were able to discern that.
Do your doctors treat your symptoms individually or collectively: both
Describe your experience with doctors: I have a great doctor!!
What remedies or medications have you tried: I am currently taking 120mg of Cymbalta (it's the only thing I have tried so far)
What makes you feel better: Sleep, dry warmth, sitting down with my legs up
What makes you feel worse: humidity, cold, too much activity, stress, emotional problems, too much noise and mental strain
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:

07/20/2010
First Name: Christine
Age: 19
Male or Female: Female
City: Salina
State/Province: Ks
Country: Saline
How long have you lived there: 19 years
Where were you born: Salina
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: Cannot work.
How has Fibro affected your life: In every way. Debilitating to social, physical and emotional aspects of life.
What were your first symptoms: Overwhelming fatigue and pain, constant nausea, loss of 27 pounds in one month, irritability, anxiety, dizziness, weakness.
Your age at onset of symptoms: 17
How fast was your rate of decline: 1 month
What are your current symptoms: Less frequent naseau, pain, fatigue, migraines, anxiety, irritability.
Number of years since you developed symptoms of fibromyalgia: 2
Do your symptoms include brain fog: Yes
Number of years since you developed the brain fog: 2
Describe the extent of your brain fog: Forget what I'm saying in the middle of a sentence, distractability, forgetfullness, inability to focus on anything and complete it.
Estimate number of doctors you have seen for Fibro related symptoms: 10
Do your doctors tend to focus on all your Fibro symptoms: No.
Do your doctors treat your symptoms individually or collectively: Individually
Describe your experience with doctors: Horrible. Medical doctors do not understand the disease. They either dismiss it as in your head or treat each symptom individual instead of looking at causes or treating the individual as a whole. Western medicine does nothing for fibromyalgia victims.
What remedies or medications have you tried: Lyrica, Hydrocodone, Clonozopam, Tramodal, Zoloft, Arnica Ointment, Food Enzymes, Super ORAC, Cardiac Assurance, Vitamin D, Nurticalm, Adrenal Support, massage, chiropractic, cognitive behavorial therapy, psychotherapy
What makes you feel better: Arnica Ointment, Food Enzymes, Super ORAC, Cardiac Assurance, Vitamin D, Nurticalm, Adrenal Support, Arnica Ointment, psychotherapy, massage, chiropractic.
What makes you feel worse: Hydrocodone, Lyrica, Clonozopam, Zoloft, sugar.
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, switched to whole, natural foods and products; drink more water; cut out caffeine, no fast food or biogenetically engineered foods.
Have you tried any thyroid specific treatments: No
Your theories or comments: Fibromyalgia is a disease that affects many areas of the individual, and the whole individual must be treated. Lifestyle changes and effective treatments must be identified and adopted.
Are we missing any important questions: No

07/19/2010
First Name: Bonnie
Age: 55
Male or Female: f
City: vancouver
State/Province: bc
Country: canada
How long have you lived there: lifelong
Where were you born:
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: yes
What is Your Line of Work: counsellor (on medical leave)
How has Fibro affected your ability to work: stiffness/depression/pain
How has Fibro affected your life: pain/depression...not going out
What were your first symptoms: arthritis like pain
Your age at onset of symptoms: 37
How fast was your rate of decline: slow
What are your current symptoms: at its worse...severe pain, major depression,ibs,
Number of years since you developed symptoms of fibromyalgia: 17
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 4
Describe the extent of your brain fog: not all together within..
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: a little of both/had any and all tests...
Describe your experience with doctors: mostly good
What remedies or medications have you tried: amatripline,gabapentin,pgx
What makes you feel better: not much these days
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: blood type diet
Have you tried any thyroid specific treatments: thyroid pills
Your theories or comments: very tired and tired of feeling tired
Are we missing any important questions:

07/18/2010
First Name: sarah
Age: 42
Male or Female: female
City: Trowbridge
State/Province: Wiltshire
Country: England
How long have you lived there: 25 years
Where were you born: London
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: no
What is Your Line of Work: Special Educational Needs Teaching Asistant
How has Fibro affected your ability to work: Unable to carry out normal tasks such as physical handling, tinking straight, keeping up with the children
How has Fibro affected your life: Had to give up my horses and dogs, cannot cook with heavy pans, no sex life
What were your first symptoms: fatigue, depression, sleeplessness and pain
Your age at onset of symptoms: 38
How fast was your rate of decline: very gradual over 2 years, rapidly from september 09 when my business crashed
What are your current symptoms: pain sleeplesness IBS depression poor memory
Number of years since you developed symptoms of fibromyalgia: 4-5
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 18 months
Describe the extent of your brain fog: forget names, events and if I have told people things.
Estimate number of doctors you have seen for Fibro related symptoms: 4
Do your doctors tend to focus on all your Fibro symptoms: no, they look at each symptom seperately
Do your doctors treat your symptoms individually or collectively: individually
Describe your experience with doctors: good
What remedies or medications have you tried: flouxotine, citalopram, omeprazole, nortriptyline, paracetamol, diclofenix
What makes you feel better: nothing so far
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: I was subjected to an extensive floride treatment as a child to help prevent tooth decay
Are we missing any important questions: floride treatment given in the past

07/16/2010
First Name: Denise
Age: 38
Male or Female: female
City: bordon
State/Province: Hampshire
Country: England
How long have you lived there: 2yrs
Where were you born: somerset
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'm in pain, suffer chronic fatigue, so every day is different, i did try to go back to work, but had to give up, cause i was shattered, and in alot more pain.
How has Fibro affected your life: can't make plans, cant arrange days out, holidays, i sleep alot, i've gone of food, i prefer to stay in doors, my mobility has deteriorated, forgotten how to spell, cant even prounoune words to spell!
What were your first symptoms: random pains and tiredness
Your age at onset of symptoms: 18months
How fast was your rate of decline: in 2002, started to go downhill, slowly at first, now monthly im loosing mobility,
What are your current symptoms: as above, forgetfulness, memory loss, restless legs, anxiety, snoring, twitching/jumping, sensitivities to smells, noise, lights, food, weather changes, poor sleep, dry mouth, weakness, weight gain, reactive hypoglycemia,
Number of years since you developed symptoms of fibromyalgia: 8, looking back on my history, its believed i was born with it.
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 4
Describe the extent of your brain fog: muddled up words, forgetful spelling, and general forgetfulness, memory loss, my words dont come out as my mind is thinkng.
Estimate number of doctors you have seen for Fibro related symptoms: 4
Do your doctors tend to focus on all your Fibro symptoms: no
Do your doctors treat your symptoms individually or collectively: individually
Describe your experience with doctors: only one doctor has told me its all in my head. my currant gp is great, will look for other solutions before blaming fibro.
What remedies or medications have you tried: amitriptyline,stemitol, lactose, mevebrine,levothyroxine, gabapentin, co q10, magnesium, siberian gingseng, vit d, vegepa, tramadol, paracetamol, naproxen venlafaxine, citrolopram, lansoprazole
What makes you feel better: gabapentin, siberian ginseng, vit d, co q10, vegepa, tramadol, paracetamol, venlafaxine,
What makes you feel worse: citrolpram, amitriptyline, stemitol,
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: levothyroxine
Your theories or comments: Am trying to cut back on some prescribtion tablets, taking vitamins and supplements have surpringly helped.
Are we missing any important questions:

07/15/2010
First Name: debra
Age: 49
Male or Female: female
City: brisbane
State/Province: queensland
Country: australia
How long have you lived there: 40 yrs on and off
Where were you born: melbourne

Is this the first time you have taken our questionnaire: no
If not, why are you returning: update, forgot something
Are you still working: no
What is Your Line of Work: was senior positions in the bank, own business in real estate
How has Fibro affected your ability to work: cant work, cant go in a building, cant have anyone near me
How has Fibro affected your life: how has it not? pain is my life. I can think of nothing else - I think I said last time of how to get off this planet without botching it, to find some peace, you will see later how hard I have tried to fix this. mcs is so bad cant be near hydrocarbons for more than a few minutes so cant live in a house. but cant camp out, allergic to trees, grass, etc. Lying in the car all day, cant move. Pain unbearable, 60 mg morphine only makes a dent, ever since addisons was diagnosed, when they could be bothered STILL crash. Every herb or med I take to try to help myself I have an extreme reaction to
What were your first symptoms: pain neck, shoulders, back
Your age at onset of symptoms: 32
How fast was your rate of decline: each year getting worse but then I wasnt diagnosed for more than 10 yrs so still eating allergic foods, still not sleeping, not staying away from stress, not helping my body at all. I had no support, no idea anybody had pain like this, thought I was th eonbly one, bored, lonely, despair, what did I do to deserve this, I was traumatised
What are your current symptoms: asthma, allergies, addisons, hashimotos, mcs, FATIGUE, ringing ears, celiac, metal poisoning, antibodies, hypoglycemic, osteoperosis, menopausal, emotional rollercoaster, insomnia, migraines, bruised all over, aching, throbbing, a demolition block banging into me. Lactic acid pouring out of every fibre, axes, spears into my head, lose my voice, blood pressure drops, body temp drops but heart racing, postural misalignment
Number of years since you developed symptoms of fibromyalgia: 17
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 17
Describe the extent of your brain fog: much worse now, much worse around chemicals
Estimate number of doctors you have seen for Fibro related symptoms: 100
Do your doctors tend to focus on all your Fibro symptoms: no, no diagnosis for more than 10 yrs
Do your doctors treat your symptoms individually or collectively: now after all this time they give me something for the pain and sleep - thats it.
Describe your experience with doctors: no biological reason because theres nothing on a standard blood test never mind the scan Youll see from the following they did do something prescribing me all that rubbish that nearly killed me
What remedies or medications have you tried: Antidepressants, virals, fungals, convulsants, anxieties, inflammatory, biotics, histamines, muscle relaxants, low dose amphetamines, mestinon, nimodipine Food allergy diets, gut repair, Chinese herbs, desensitization, allergy shots, b shots, Vit C, glutathione, iron, increasing blood volume, chelation, oral, suppository, Ivs. Zeolite, bentonite clay, naet, erg machine, tft, nac, msm, alpha lipoid acid, ch77, charcoal, Clay baths, nutritional detox, infrared saunas, air filters Goldsteines protocol From fatigue to fantastic protocol Before cfs diagnosis, chiros, osteos, physios, naturopaths, homeopaths, all types of massage, accupuncture, kinesiology, sharmanism, energetic healer, cranial sacral, feldenkraus, muscular rehab, physician, OT, hydrotherapy, trigger point therapy, laser therapy, jet therapy, bodywork, podiatrists, dry needling, ultrasound, bowen, meditation, numerous relaxation techniques, yoga, tai chi, Alexander, hypnosis, NLP Neurologists, rheamatologists, pain specialists, 3 pain clinics, psychiatrists, spinal surgeon, asthma specialist, allergist, immunologist, endocronoligist Arnica, pain patches, potions, lotions, meds, cream, noni juice, emu oil, every mlm product, ventalin, simbacourt, nose sprays, hormone supplementation, liver, kidney, parasite cleanse, oxygen tanks, liquid oxygen, therapies; oil, probiotic, vitamins, digestaid, delta wave cds, healing cds, kava kava, feverfew, willow bark, curcurim, Hgh, deprenyl, same, liver guard, thyroid guard, grape seed extract, cell food, colloidal minerals, nerve tonics, body tonics, colloidal silver, liquid iron, BACC, protein powder, KI, fish oil, olive leaf, wild yam, Astra forte,garlic, oxyrich, GI detox, transfer factor, A, B6, B12, B shots, iron, C, E, fish oil, $100 isotonic antioxidants, zinc, multi, 5htp, taurine, glutamine, glycine, methionine, niacin, carnitine, just ditched the lyrica & endep to see if I could get rid of some of this fatigue.

I knew Id forget - steroid shots into trigger points, a doctor put 32 anasthetic shots into my scalp - that hurt. did I mention the reiki, back, neck, shoulder braces, activive, guainefesin, ginseng, chlorella, all the stuff to get rid of candida, d ribose and all the other energy producers, provigil, and before I had a diagnosis a decade of drinking red wine to help kill the pain. Im sure that helped!! all that sugar and sulfites.

What makes you feel better: niacin for a short while, morphine
What makes you feel worse: too hot, too cold, humid, too dry, has to be just right, CHEMICALS, smells, light, too loud, most treatments, most meds, herbs, THE BEACH!!! If I go to the beach I am SO ILL.... and I love the beach. this is so cruel On dark, I go into a coma like state, ears ringing much louder, pain x 10, its unbearable.
Have you tried avoiding fluoride in your diet: yes
If so, which sources of fluoride: tap water, drugs,
Have you made dietary changes to avoid any other neutrotoxins: yes, processed foods
Have you tried any thyroid specific treatments: thyroxin, doctor put me on, another one wants me off, another wants me back on again. blood tests for thyroid is normal but I had more energy with it
Your theories or comments: As said I have found 15 theories that have merit but we all probably know its not just 1 thing and probably different for all of us. Has our body just got stuck on the on switch and we cant turn it off?? Can we believe the hair analysis? Can my ca overload in arteries, blood, tissues be responsible for all of this.
Are we missing any important questions: yes, discussing all the theories and their pros and cons. are our houses making us sick. I went to a chemical free place and it had mould in it. Ive never been the same since.

07/15/2010
First Name: Amy
Age: 25
Male or Female: female
City: Upperco
State/Province: MD
Country: USA
How long have you lived there: in the area forever
Where were you born: Reisterstown, MD
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: yes
What is Your Line of Work: receptionist/nursing student
How has Fibro affected your ability to work: causes stress from the pain, slows me down, depression from the stress caused by pain, migraines make me miss work and school
How has Fibro affected your life: I've missed many fun activities, miss out on time with friends bc I'm in too much pain, tired or out of comission from a migraine.
What were your first symptoms: "shin splints" and back pain, migraines, and I wonder about hyper activity being a possible ped symptom.
Your age at onset of symptoms: 12
How fast was your rate of decline: after diagnosis it has greatly improved. duration of daily pain has decreased, # of pressure points has decreased (but locations changed), decreased dosage of meds
What are your current symptoms: pain (mostly affecting arms and legs), muscle spasms, migraines, fatigue and fogginess, depression/frustration/anger with pain, difficulty sleeping when meds missed.
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: not sure
Describe the extent of your brain fog: usually accompanying the fatigue from overwhelming pain. Low energy, apathy in duties.
Estimate number of doctors you have seen for Fibro related symptoms: 3
Do your doctors tend to focus on all your Fibro symptoms: my current doctor
Do your doctors treat your symptoms individually or collectively: individually
Describe your experience with doctors: my current doctor is great, I really like his mentality towards my condition and goals.
What remedies or medications have you tried: muscle relaxant, anti inflamatory, nsaid when needed, heat application, hot shower morning and before bed daily. Eating well, and moderate exercise regularly, low caffiene intake, beta blocker, looking into herbal remedies.
What makes you feel better: heat, rest, sometimes nothing.
What makes you feel worse: cold, stress, missing meds, sitting for long periods of time.
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride: na
Have you made dietary changes to avoid any other neutrotoxins: keep caffiene, sugar, and alcohol intake low.
Have you tried any thyroid specific treatments: no
Your theories or comments: would be interested in participating in studies
Are we missing any important questions:

07/12/2010
First Name: Kate
Age: 57
Male or Female: female
City: Greybull
State/Province: Wy
Country: USA
How long have you lived there:
Where were you born:
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: yes
What is Your Line of Work: teacher
How has Fibro affected your ability to work: If I work to hard "physically" I pay for it for at least 3 days with excessive pain.
How has Fibro affected your life: It has kept me from doing the things I love to do in life that require physical endurance. My muscles are deteriorating each day. I keep pushing myself each day, I won't give in.
What were your first symptoms: Excessive fatigue and a different kind of aching muscles.
Your age at onset of symptoms: 42
How fast was your rate of decline: By age 50 I have been miserable
What are your current symptoms: Muscle fatigue, tenderness, overall sadness.
Number of years since you developed symptoms of fibromyalgia: 18 years
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 8 years
Describe the extent of your brain fog: It comes and goes, but it takes a lot of effort to make myself "focus" to get anything done.
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: Was told to take ibuprophen because there is no cure.
Describe your experience with doctors: They don't believe in fibromyalgia. They think I'm exaggerating about my symptons.
What remedies or medications have you tried: Rest, sunshine, hot baths, candling and ACV.
What makes you feel better: Hot baths and rest
What makes you feel worse: Stress and cold and lack of sunshine.
Have you tried avoiding fluoride in your diet: No
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: no
Have you tried any thyroid specific treatments: no
Your theories or comments: I thought it was menopause/thyroid/arthritis symptoms but have concluded it must also include fibromyalgia.
Are we missing any important questions: no

07/08/2010

First Name: B.
Age: 46
Male or Female: Female
City: Dade City
State/Province: Florida
Country: USA
How long have you lived there: 9 years
Where were you born: Auburn 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: Fitness Trainer
How has Fibro affected your ability to work: Some days I just cannot work out, and I find myself hoping no new people come in, because I can't work out with them if they do!
How has Fibro affected your life: It's awful. I used to be so physically active, raised 7 children, had my own new construction cleaning business, built houses with Habitat for Humanity, now I can barely do anything in my own home, including household chores!
What were your first symptoms: Exhaustion and pain.
Your age at onset of symptoms: 39
How fast was your rate of decline: Very fast, changed totally in a matter of months.
What are your current symptoms: Exhaustion, pain, foggy headed, frustrated, joints ache, not sleeping well, hard to lose weight now, and I was a size 5 after 6 of the children!
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: Dome days it's worse than others, but I can't seem to concentrate, can't remember things, no real desire to get up and do things.
Estimate number of doctors you have seen for Fibro related symptoms: 2 and one N.P.
Do your doctors tend to focus on all your Fibro symptoms: Not the brain fog.
Do your doctors treat your symptoms individually or collectively: Collectively
Describe your experience with doctors: Sometimes good, sometimes extremely frustrating!! They don't know what to do, except try to push Lyrica, and after studying it, I don't want anything to do with it!
What remedies or medications have you tried: They had me try Cymbalta at first, and it helped a little for about 8 weeks, then just stopped. Scared me anyway, I had begun to hallucinate a little.
What makes you feel better: I take Tramadol, which doesn't do much at all, and Vicodin, it helps, but nothing makes it go away, lol.
What makes you feel worse: Being on my feet for long periods, working in heat, stressful situations.
Have you tried avoiding fluoride in your diet: No, is there a reason to?
If so, which sources of fluoride: n/a
Have you made dietary changes to avoid any other neutrotoxins: I didn't know there were diet changes I could make? What foods have neurotoxins??
Have you tried any thyroid specific treatments: No, didn't realize thyroid was a part of this?
Your theories or comments: I'd just like to know if you have anything that could help, I'd love more info on the fluoride and neurotoxins in food!!!
Are we missing any important questions: Not that I can think of at the moment, lol?

07/05/2010
First Name: Linda
Age: Jesme
Male or Female: F
City: LeMars
State/Province: IA
Country: USA
How long have you lived there: Born here
Where were you born: MN
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: yes
What is Your Line of Work: Asst manager, post office
How has Fibro affected your ability to work: tire easily, sore joints
How has Fibro affected your life: hard to get motovated to do anything because of pain ans achiness
What were your first symptoms: stiffness
Your age at onset of symptoms: 51
How fast was your rate of decline:
What are your current symptoms: hard to get out of bed, sore joints
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 remeber names sometimes, takes me a while for things to register
Estimate number of doctors you have seen for Fibro related symptoms: 2
Do your doctors tend to focus on all your Fibro symptoms: not really
Do your doctors treat your symptoms individually or collectively: collectively
Describe your experience with doctors: hard to get them to realize the extent
What remedies or medications have you tried: massages, over the counter pain pills, rubs
What makes you feel better: massages
What makes you feel worse: laying around
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride: i only drink bottled water
Have you made dietary changes to avoid any other neutrotoxins: i eat mostly home cooked
Have you tried any thyroid specific treatments: i'm on levothyroxin
Your theories or comments:
Are we missing any important questions:

07/05/2010
First Name: Terri
Age: 52
Male or Female: female
City: Bellefontaine
State/Province: Ohio
Country: USA
How long have you lived there: 52 years
Where were you born:
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: no
What is Your Line of Work:
How has Fibro affected your ability to work:
How has Fibro affected your life: very debilitating and financially expensive
What were your first symptoms: Myofacial pain
Your age at onset of symptoms: 30
How fast was your rate of decline: slowly at first but increasing quicker with age
What are your current symptoms: myofacial pain, pain in spine, chronic pain, tmj, carpel tunnel, headaches,weak muscles, fatigue,unable to sleep, brain fog
Number of years since you developed symptoms of fibromyalgia: over 20
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 9
Describe the extent of your brain fog: memory and concentration problems
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: listens well
What remedies or medications have you tried: anti depressants, nsaids, lyrica,phenermine, massage therapy,physical therapy, chiropractic
What makes you feel better: lyrica, phenermine, massage
What makes you feel worse: physical therapy
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: as much non processed foods as possible
Have you tried any thyroid specific treatments: no
Your theories or comments:
Are we missing any important questions:

07/04/2010
First Name: Betty
Age: 76
Male or Female: Female
City: Mt. Carmel
State/Province: IL
Country: USA
How long have you lived there: 76 yrs.
Where were you born: Sumner, IL
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: no
What is Your Line of Work: Nursing
How has Fibro affected your ability to work: Made me miseral.
How has Fibro affected your life: Made me a much less valuable person. Unable to do for others like I would like to do. Unable to go places that I would like to go. Unable to do for my family like I would like to.
What were your first symptoms: Unable to raise my arms to comb my hair. Irritable bowel syndrone, itching on my back, scalp, and elsewhere, pain all over my body that required medication, and the ones that you mentioned here.
Your age at onset of symptoms: Probably 65
How fast was your rate of decline: Quickly at first, but has slowed since.
What are your current symptoms: Irritable bowel syndrone, aching and stiff muscles, unable to sleep at night, chronie fatigue, never feeling well, and brain fog
Number of years since you developed symptoms of fibromyalgia: 10 years at least
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: maybe 5-10
Describe the extent of your brain fog: Always misplacing my keys, and not being able to remember where I left them, trying to recall names of people I know so well, but can't remember their names, forgetting being places that my husband thinks I should remember.
Estimate number of doctors you have seen for Fibro related symptoms: two
Do your doctors tend to focus on all your Fibro symptoms: They tried
Do your doctors treat your symptoms individually or collectively: Individually
Describe your experience with doctors: They have been very kind and don't just say that it is all in my head like some of my friend's doctors. They try to give me medications that help with the pain, and to help me to sleep.
What remedies or medications have you tried: Gabepenton, Lyrica, and others that I can't recall the names.
What makes you feel better: Aerobics exerise, rest
What makes you feel worse: Hard work, no exerise.
Have you tried avoiding fluoride in your diet: No
If so, which sources of fluoride: Floride in toothpaste, floride treatments every six months to my teeth, drinking tap water, and I'm sure pesticides, etc.
Have you made dietary changes to avoid any other neutrotoxins: I'm not sure.
Have you tried any thyroid specific treatments: Yes, I take a daily Levothyroxin for hypothyroidism.
Your theories or comments: I wish more that anything that I could get rid of irritable bowel syndrone. It comes on me when I least expect it, and can be absolutely terrible and embarrassing. To not be able to control your bowels at times, is just about the worst thing I can think of.
Are we missing any important questions: Not that I know of.

07/04/2010
First Name: Stephen
Age: 37
Male or Female: Male
City: Jamison
State/Province: PA
Country: USA
How long have you lived there: 2 years
Where were you born: Langhorne, PA
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: Accountant
How has Fibro affected your ability to work: Absolutley, can't focus the way I need to. Lucky I work for my Dad, and lot of missed time
How has Fibro affected your life: social loss of friends, no motivation at work, loss of sex drive, no emotion...
What were your first symptoms: Presure in ears, pulsing headaches, fatigue
Your age at onset of symptoms: 27
How fast was your rate of decline: Slow....I declined slowly for many years
What are your current symptoms: Pressure in ears, headaches, muscle and nerve pain all over, insomnia, IBS, lack of emotion, brain fog, can't focus
Number of years since you developed symptoms of fibromyalgia: 12
Do your symptoms include brain fog: Yes
Number of years since you developed the brain fog: 7
Describe the extent of your brain fog: It's bad. I can't focus on anything too long and it is really hard for me to think deeply. Can't remember people's names. Memory is bad.
Estimate number of doctors you have seen for Fibro related symptoms: 35
Do your doctors tend to focus on all your Fibro symptoms: Sometimes
Do your doctors treat your symptoms individually or collectively: Both...
Describe your experience with doctors: I haven't gotten anywhere. Some thought I had anxiety disorder for awhile. They just tried to put me on tons of medications which did not work at all and had side effecs.
What remedies or medications have you tried: Colonic hydrotherapy, acupuncture, supplements, massage, special diets
What makes you feel better: Massage and colonic hydrotherapy at times
What makes you feel worse: Extreme heat or cold, too much exercise, eating dairy or too much sugar
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: CMV virus opened my body up to an infection and the sinus surgery moved it to other parts of my body. Should have had medication to prevent that at the time.
Are we missing any important questions:

07/01/2010
First Name: Tammy
Age: 52
Male or Female: Female
City: Brooklet
State/Province: Ga
Country: USA
How long have you lived there: 52 Years
Where were you born: Savannah, Ga
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: Management
How has Fibro affected your ability to work: Yes
How has Fibro affected your life: Tired and hurt all the time
What were your first symptoms: Muscle spasms
Your age at onset of symptoms: 42
How fast was your rate of decline: quick
What are your current symptoms: pain all over, headaches, fatigue
Number of years since you developed symptoms of fibromyalgia: 10
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 10
Describe the extent of your brain fog: In a daze all the time, no interest in anything
Estimate number of doctors you have seen for Fibro related symptoms: 10
Do your doctors tend to focus on all your Fibro symptoms: yes
Do your doctors treat your symptoms individually or collectively: collectivally
Describe your experience with doctors: ok, gave me cortizone shots in neck
What remedies or medications have you tried: skelaxin, cymbalta, cant remember all of them
What makes you feel better: nothing
What makes you feel worse: Fatigue
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: no
Have you tried any thyroid specific treatments: no
Your theories or comments: I am tired of the pain, headaches and fatigue
Are we missing any important questions: no

07/01/2010
First Name: Rachel
Age: 36
Male or Female: Female
City: Colorado Springs
State/Province: Co
Country: USA
How long have you lived there: 6 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: Manage large retail stores, mainly jewelry stores
How has Fibro affected your ability to work: yes - I can't do it anymore. Not only were the pain and fatigue unbearable but the more I tried to push through them the more physical ailments my body came up with.
How has Fibro affected your life: It has limited it severely. I hurt constantly - I also have arthritis in my spine, neck, hips, hands and feet and the Fibro multiplies that pain. I am always exhausted, I have trouble following a project from start to finish, if the pain and fatigue don't get me the mind fog does. Of all the symptoms though the fatigue is the worst. I would gladly bear the pain if I could get my energy and zest for life back. I'm a mother and a wife and its sometimes all I can do to just get through the day. I hate being a burden to my family.
What were your first symptoms: PAIN!PAIN!PAIN!!! severe unrelenting pain! fatigue, insomnia and migraines were what I noticed at first, but it was all secondary to the pain.
Your age at onset of symptoms: 17 when it began cycling, 25 when it became permanent
How fast was your rate of decline: slowly at first,until it stopped cycling at 25. Since then it seems to be getting progressively worse but at a very slow pace.
What are your current symptoms: Pain, fatigue, insomnia are the worst. But there are also sensitivities to chemicals. My skin is sensitive to touch, heat and cold, but I also have a hard time adjusting to changes in temperature and regulating my own body temperature. Fibrofog and digestive issues, anxiety and depression along with migraines. I'm sure there's more....
Number of years since you developed symptoms of fibromyalgia: 19 since it began to cycle,11 since it became permanent.
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 8
Describe the extent of your brain fog: hard to think at times, can't grasp words on the tip of my tongue, can't remember what task I was working on...its like wading through sand in my brain sometimes.
Estimate number of doctors you have seen for Fibro related symptoms: approximately 10
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: for the vast majority its been a nightmare. I've heard the 'its all in your head' to 'your just a drug addict trying to feed your addiction'. In the last two years I found a great family practice doctor and I work with him and a pain specialist in conjunction.
What remedies or medications have you tried: Be shorter to list what I haven't. Herbs and alternative therapies, about every pain med available, anti-depressants for the pain, anti-seizure meds, Lyrica, Cymbalta....and the lists go on...
What makes you feel better: Ultram. It seems to have the best effect on the nerve pain and I have no negative side effects and I do not develop a tolerance and need to up my dosage.
What makes you feel worse: Cymbalta - really bad side-effects, but it does help with achiness. Lyrica really helped pain but the weight gain was to much to handle. I'm so sensitive to chemicals its hard to find something that helps more than it hurts.
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: I try to eat as healthy as possible, and I got a Vitamix so that I can maximize my raw diet.
Have you tried any thyroid specific treatments: Dr.s say my thyroid is ok - so no.
Your theories or comments: I think its the toxins in our environment that cause the chemicals in our brain to go haywire.
Are we missing any important questions: Fibro is so individualized its hard to tell. A question vital to me might mean nothing to another sufferer.

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