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Fibromyalgia Questionnaire & Results

Latest Update: 11/20/2009 

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37 QUESTIONNAIRE COMPLETED DATA FORMS FOR July 2009

07/30/2009
First Name: Sherri
Age: 48
Male or Female: Female
City: Menifee
State/Province: CA
Country: USA
How long have you lived there: 10 years
Where were you born: Anaheim, CA
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: New Home Sales
How has Fibro affected your ability to work: I never know which days I will be able to function or even get out of bed.
How has Fibro affected your life: I am losing my home, can not spend as much time with my grandchildren, and am limited in the amount of involvement with our ministry.
What were your first symptoms: My muscles have been tight in neck and shoulders since I was 16. I have had all the "pressure points" for 20 years. 3 years ago I had a stressful day at work and have not been able to go back. (Although I have tried)
Your age at onset of symptoms: 45 when I was diagnosed
How fast was your rate of decline: Scary fast
What are your current symptoms: Chronis headaches, limited ROM, flu like muscle pain, hip and shoulder pain, intolerance to bright lights and loud noise, ribs that dislocate due to muscle spasm, fatigue, memory impairment,dizzines, depression,
Number of years since you developed symptoms of fibromyalgia:
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 3
Describe the extent of your brain fog: Mid sentance forget what I am saying, afraid to call someone by name for fear of saying wrong one, open freezer instead of pantry (several times a day go into room and forget what I went in for.)
Estimate number of doctors you have seen for Fibro related symptoms: 14
Do your doctors tend to focus on all your Fibro symptoms: no, I was seeing many doctors for years who only focused on one aspect like neck pain or headaches
Do your doctors treat your symptoms individually or collectively: both
Describe your experience with doctors: 1 pain dr was more concerned with my not get relief as a reflection on himself, the other pain dr was concerned with me O D ing and it being in the paper that he was the DR. The pain psychologist was great but spent too much time on my childhood. ER and urgent cares ususally think I want more drugs. Chiropractic helps but is too costly as often as i need to go. My family physician is the most patient and spends the time with me.
What remedies or medications have you tried: Chiropractic, accupuncture, 3 pain specialist who gave injections, massage, soma, motrin, flexeril, norco, tyl #3, lyrica, celebrex other nsaids, and there are more that I can't remember
What makes you feel better: soma & Norco although I have built up quite a resistance to the Norco I can't afford the stronger stuff
What makes you feel worse: Stress, exercise, lifting, sitting or standing or laying too much, insomnia
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: no
Have you tried any thyroid specific treatments:
Your theories or comments:
Are we missing any important questions:

 

07/28/2009
First Name: Leah
Age: 38
Male or Female: Femail
City: Cleveland
State/Province: TN
Country: USA
How long have you lived there: 4 years
Where were you born: Seattle, WA
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: Incredibly - I lose focus easily, and have a hard time with simple math. Additionally, simply getting up in the morning, getting myself and family ready for the day is enough to exhaust me.
How has Fibro affected your life: I feel trapped. My husband feels trapped. I'm afraid to make plans for fear that I won't be able to follow through if a flare or the overwhelming exhaustion comes on.
What were your first symptoms: Flu like muscle aches and exhaustion
Your age at onset of symptoms: 37
How fast was your rate of decline: I feel it has been fairly rapid - less than 2 years.
What are your current symptoms: Muscle aches, terrible sleep, exhaustion with little exertion, brain fog, sensitivity to sound, IBS
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: I can't read and retain, let alone comprehend information at times. I have trouble reading aloud to my children. I'll lose train of thought easily, can't finish a sentence because I can't come up with the words. Simple math / mathmatical concepts make no sense. My memory seems to fail me often.
Estimate number of doctors you have seen for Fibro related symptoms: 5
Do your doctors tend to focus on all your Fibro symptoms: No - my exhaustion has been attributed to having small children.
Do your doctors treat your symptoms individually or collectively: Individually
Describe your experience with doctors: Frustrating - I sometimes need something more powerful for pain - but am treated as if I'm drug seeking.
What remedies or medications have you tried: Lyrica, Cymbalta, Ambien CR, Tramadol, NSAIDs. Now seeking more natural remedies as I truly believe that I'm doing more damage with the prescriptions
What makes you feel better: Rest, de-stressing
What makes you feel worse: Trying to 'push-through' the exhaustion and/or pain. It only gets 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: Just beginning to seek more information.
Have you tried any thyroid specific treatments: No
Your theories or comments:
Are we missing any important questions:

 

07/27/2009
First Name: lesley
Age: 50
Male or Female: Female
City: Peterborough
State/Province: united kingdom
Country: united kingdom
How long have you lived there: 50years
Where were you born: peterborough
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: cant do the things i used to be able. chronic pain in my feet
What were your first symptoms: feet hurting swollen feet and hands
Your age at onset of symptoms: 49
How fast was your rate of decline:
What are your current symptoms: pain all over body, chronic pain in feet
Number of years since you developed symptoms of fibromyalgia: 6 months
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 1 year
Describe the extent of your brain fog: simple things go to do it then forget in split second
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: dr treats as if you can live with this. does'nt understand the pain, thats my view
What remedies or medications have you tried: tramadol amitriptyline
What makes you feel better: niether
What makes you feel worse: doing housework walking, when ive done this i suffer
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:

 

07/27/2009
First Name: Lauren
Age: 27
Male or Female: Female
City: York
State/Province: Pa
Country: U.S.A.
How long have you lived there: 4 Years
Where were you born: Fredricksbug, VA
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: no
What is Your Line of Work: Resteraunt managing/serving
How has Fibro affected your ability to work: I can't work and go to school at the same time.Come home in sever pain every day
How has Fibro affected your life: Havn't been able to get a job. In pain everyday, cannot take narcotics or lyrica, causes friction with me and my famiy, having trouble at school.
What were your first symptoms: knee and elbows radiating pain all over my legs and arms. Everything felt different, i felt less intelligent
Your age at onset of symptoms: 26-27
How fast was your rate of decline: has stayed pretty steady with a little increase in pain.
What are your current symptoms: pain in elbow joints, and upper neck and lower back
Number of years since you developed symptoms of fibromyalgia: 7mos.
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 2-3 years
Describe the extent of your brain fog: I cant remember peoples names, keep up with conversations, have alot of trouble with my school work.
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: Not good. I do not have good insurance so i kind of get shoved out of the door. Alot of them think your med seeking even though I can't take narcotics
What remedies or medications have you tried: lyrica, ginko biloba, tramadoll, klonazapam
What makes you feel better: klonazpam, lyrica but lyrica also makes me kinda loopy
What makes you feel worse: none
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride: tap water,ect.
Have you made dietary changes to avoid any other neutrotoxins: yes
Have you tried any thyroid specific treatments: no
Your theories or comments: I need a lower dose of lyrica
Are we missing any important questions: no

 

07/27/2009
First Name: Penny
Age: 33
Male or Female: female
City: Wolfsville
State/Province: MD
Country: USA
How long have you lived there: 8 years
Where were you born: Fair Play, MD
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: No
What is Your Line of Work: home maker
How has Fibro affected your ability to work: 5 out of the 7 days of a week I am not being able to finish simple task.
How has Fibro affected your life: I am way more stressed because of the ability to not finish work that I have done and not being able to sleep dosent help either.
What were your first symptoms: Tired all the time.
Your age at onset of symptoms: 26
How fast was your rate of decline: its been 6 yrs and getting worse.
What are your current symptoms: stiffness, insomnia, fatigue, headaches.
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: 4
Describe the extent of your brain fog: it is hard to tell beings I suffer from ADD.
Estimate number of doctors you have seen for Fibro related symptoms: 3
Do your doctors tend to focus on all your Fibro symptoms: no
Do your doctors treat your symptoms individually or collectively: no
Describe your experience with doctors: One doctor told me I had it and then the next year told me i dident went to another doctor they said it dident exsist, the next just said i did. I have no Med Insurence so Im on my own.
What remedies or medications have you tried: Narcotics made it worse, Lyrica helped but cant afford it. Ibuprofen helps the most but cant take more then should.
What makes you feel better: a nice sunny day. the weather makes it or breaks it.
What makes you feel worse: over doing it on days i feel good and rain.
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 have come to realize in order to deal with firbo you need to change everything you do. Eating the right foods avoiding the wrong foods, excersising evryday but not over doing it. But we all know this is not an easy task!
Are we missing any important questions:

 

07/27/2009
First Name: jane
Age: 45
Male or Female: F
City: houston
State/Province: Texas
Country: USA
How long have you lived there:
Where were you born: la
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 was fired because I was missing to many days of work and could not not take the pain any longer
How has Fibro affected your life: my life ended
What were your first symptoms: Pain in lower back
Your age at onset of symptoms: 30
How fast was your rate of decline: staedy
What are your current symptoms: Severe and chronic Pain and muscle spasms to neck and lower back
Number of years since you developed symptoms of fibromyalgia: 15+
Do your symptoms include brain fog: yes sometimes i can not remember how to spell words
Number of years since you developed the brain fog:
Describe the extent of your brain fog: can not do math without paper, can not recall numbers
Estimate number of doctors you have seen for Fibro related symptoms: 10+
Do your doctors tend to focus on all your Fibro symptoms: most Drs think that you are a drug addict as soon as you say "I hurt" they try to get you out of their office
Do your doctors treat your symptoms individually or collectively: right now i have 2 Dr that work together to help with my pain
Describe your experience with doctors: very bad
What remedies or medications have you tried: acupucture,chiropractoer,physical thearpy surgury,neurontion,topamex,flexiral,ect every antideppressant available now on lyrica,loracet,soma
What makes you feel better: Hot shower or bath
What makes you feel worse: any activity
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: no
Have you tried any thyroid specific treatments: no
Your theories or comments: I think Drs should learn more about this problem and remember that without us they would have no jobs..I have left too many drs offices crying because the dr did not believe me
Are we missing any important questions: Should Drs be allowed to tell us when or if we are in pain? Because thats what they do most say " I know you don't hurt that bad or everyone has pain you just have to live with it "

 

07/27/2009
First Name: rosemary
Age: 62
Male or Female: female
City: london
State/Province: london
Country: united kingdom
How long have you lived there: 62 years
Where were you born: england
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: yes
What is Your Line of Work: car sales
How has Fibro affected your ability to work: yes
How has Fibro affected your life: yes
What were your first symptoms: stiffness and joint pain
Your age at onset of symptoms: 61
How fast was your rate of decline: stiffnes noticed and ignored at first for maybe 2months then an onset of extreme joint pain in dec 2008 doctor thought l had polymyalgia but blood tests ruled this out and fibromyalgia was diognosed
What are your current symptoms: manageable l am taking numerous supplements and the extreme pain has decreased l find moving and working even on bad beneficial
Number of years since you developed symptoms of fibromyalgia: 9months
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: two
Do your doctors tend to focus on all your Fibro symptoms: no
Do your doctors treat your symptoms individually or collectively: no treatment offered
Describe your experience with doctors: dismal
What remedies or medications have you tried: 1 bromoline at waking,1caprylic acid, 2 omega3/6 oils, 2advanced multibillion dophillus, 2 glucosamine,1 q10, 1 antioxidant nutrients with breakfast of muesli/nuts red grapes/blueberries with lactose free milk. before going to bed l take 2 magnesium pills
What makes you feel better: moving
What makes you feel worse: sitting still
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: yes l no longer eat bread/wheat/potatoes/normal milk/red meat
Have you tried any thyroid specific treatments: no
Your theories or comments: l seems to suffer more when the air is damp
Are we missing any important questions:

 

07/27/2009
First Name: Margie
Age: 54
Male or Female: Female
City: Baden
State/Province: Pennsylvania
Country: USA
How long have you lived there: 54 years
Where were you born: Sewickley PA
Is this the first time you have taken our questionnaire: Yes
If not, why are you returning:
Are you still working: No
What is Your Line of Work: I worked as a retail merchandiser and when my symptoms grew worse, I took an inside job as an administrative asistant.
How has Fibro affected your ability to work: I had to stop working in 2001 after changing jobs, working part time and even being called in just one day per week. I am now collecting SSD, which by the way is under review to see if I have "recoverd" enough to return to work.
How has Fibro affected your life: I went from a very healthy, busy, active, and fit woman who took care of my family my parents, worked, and walked between 3-5 miles per day to someone who has to hobble around like I am 90 years old. Constantly in pain, awful stiffness, all of the things that go along with fibro. I can no longer crochet, hold a book or a piece of music ( I sing, or I used to) for longer than a few minutes without cramping up in pain. I can not travel, walk for execise, do many household chores, nothing that requires raising my arms or bending. I loved being active and working. There are times when I am too tired and in too much pain to even go out for dinner with my husband. Intimacy has become too painful also. I have to think if we were younger, my husband may leave me,and I could not blame him.
What were your first symptoms: Intolerance to many medications and pain in my neck and shoulders.
Your age at onset of symptoms: 41
How fast was your rate of decline: The first few years after the surgery, I continued to work. As my pain level incrased, so did my work schedule. I went from a job in outside sales and merchandising to a desk job. I would have to say that over the first 5 years or so, I went from being able to work to having to stop entirely. I thought it would just be until I could rest and "recover." I never recovered. My doctor diagnosed fibrolyalgia in 2002. Over the next several years, new symptoms devloped besides just the aches. I have trouble at times with my vision, I forget things,I have had issue with anxiety, restless legs, carpal tunnel syndrome, plantar faciitis, constant ringing in my ears, over active bladder and IBS I would say the rate of decline has been even and constant over the last 13 years.
What are your current symptoms: Headaches, IBS, restless legs, all over muscle pain the severity directly related to my level of activity. Bladder pain and frequency, vulvar burning, trouble focusing (vision) at times. Carpal tunnel syndrome in both hands, plantar faciitis in both feet, TMJ,nerve pain that feels like an insect bite, feeling like something is crawling on me,Fatigue, and anxiety
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: 10
Describe the extent of your brain fog: Sometimes worse than others. I used to be able to remember facts, names, jokes, etc. Now I can hear something and literally forget it moments later. My family will tell me something and I will have no recollection of them telling 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, I see a primary care doc, he mostly helps me with insurance forms so that I can keep my disablity, a chiropractor for my hands, a naturapath for many other fibro symptoms, and saw a rheumatologist for diagnosis.
Do your doctors treat your symptoms individually or collectively: Individually
Describe your experience with doctors: I am fortunate to have a primary care doctor who is very understanding and believes that fibromyalgia is real. He has tried to help me with medications but I don't react well to them. My chiropractor is also great. He said I am his most high functioning fibro patient. I think that is because I usually try to keep going no matter how bad I feel. My naturapath is wonderful, has fibro herself, so she really gets it. She has me taking magnesium, for the restless legs and has made dietary suggestions. She helped me with accupressure. My gynecologist of 20+ years treated me with great compassion and respect, but he retired last year. His replacement spent very little time with me after I told him I had fibro. I could literally see his eyes glaze over and he turned his back to me and wrote someting on my chart. He was out the door and never spoke to me after that. I will NOT be going back to him.
What remedies or medications have you tried: Celebrex, which did little and landed me in the ER with a bad reaction. Chiropractic, helps some with hands. Massage helps very temporarily, accupressure helps a little, TENS unit, psycho therapy, natural medicine.
What makes you feel better: Pacing myself, not doing too much before a rest period. TENS unit, heat, hot tub. Getting out of the house and visiting with family and friends. Listening to music, deep relaxation/ self hypnosis.Laughing!
What makes you feel worse: Too much activity, standing too long, sitting too long, holding a book etc for any lenght of time, Cold wet weather, long shopping trips, riding in a car, stress, lack of sleep, worrying about my future
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 try to fast one day per week, and avoid as many preservatives and chemicals in food. I don't drink soft drinks or alcohol, more whole grains and vegetables
Have you tried any thyroid specific treatments: No, had all tests run, results normal.
Your theories or comments: Something is very very wrong with my body. It feels "toxic." I went into my surgery healthy and came out a different, sick person who was allergic and intolerant to many things I did not have problems with before. Yes, I was on cipro 2 times following that surgery. Did it cause this awful illness?
Are we missing any important questions: Are we treated badly in general because of this illness? I struck up a conversation with the lady in the paint department of the local hardware store. I told her that I just buy the paint and my husband and sons do the work. As we chatted, I told her that I could not paint/work (which I typically do not tell people) because of my fibromyalgia. Her response was " I think I will tell people that I have that too so I can get out of work!" I told her I would trade places with her in a heartbeat, that there is no way she wants this, and yes, it's very real. I think we are more and more accepted now as people hear about fibro, but I have experienced comments like this more than once. So I seldom tell people that I have it until I get to know them. I have a handicap parking spot in front of my house, and the boy next door asked me why I get a "private" parking spot? How do we explain this when we look fine and normal for the most part. Oh, and how many of us have gained a lot of weight because we cannot be active like we used to be?

 

07/26/2009
First Name: SAMANTHA
Age: 18
Male or Female: FEMALE
City: LEANDER
State/Province: Tx
Country: US
How long have you lived there: 18 YRS
Where were you born: Round rock
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: cocktail server
How has Fibro affected your ability to work: im slower i cant concentrate and i get tired very easy
How has Fibro affected your life: All i do mostly is sleep or lay in bed
What were your first symptoms: Tingling pains in sholders
Your age at onset of symptoms: 17
How fast was your rate of decline: pretty fast
What are your current symptoms: fatigue, all over pain, shortness of breath, irritable bowel syndrome, headaches, brain fog, and much more
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: my mind goes blank for mins at a time and i have a hard time remembering things
Estimate number of doctors you have seen for Fibro related symptoms: 1
Do your doctors tend to focus on all your Fibro symptoms: no
Do your doctors treat your symptoms individually or collectively: individually
Describe your experience with doctors: they can not really help my symptoms
What remedies or medications have you tried: herbal vitamens and painkillers
What makes you feel better: nothing
What makes you feel worse: working out and work
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 just want to feel better
Are we missing any important questions: how am i sure if i have it

 

07/25/2009
First Name: janell
Age: 43
Male or Female: f
City: knoxville
State/Province: tn
Country: usa
How long have you lived there: 1 year -30 yrs macon ga
Where were you born: louisville ky
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: interior designer- building contractor
How has Fibro affected your ability to work: my energy level is so low that some days its hard to walk around the grocery to the dairy section( in the back) I clean house forcing myself to go do as much as I can then sit down. rest- work -sit
How has Fibro affected your life: It's defined who and what I am. I am no longer a valuable strong women, intelligent(never forget anything),who was not defined by what she can't do,but people being amazed by what I did do!!
What were your first symptoms: fatigue, forgetting simple things,pain
Your age at onset of symptoms: hypothyriod 22yrs-fatigue21yrs-pain 25yrs
How fast was your rate of decline: age 30 I had an intense time of being bed ridden total shut down of digestive system,lost gallbladder, pulmonary embolism ,40 days of in and out of hospital bed ridden, spent the next 5 years with inflammation in intestines and even attracting to bone in lower back,kidney infection etcs never have recovered from loss of health fatigue has gotton worst and pain is 10 times
What are your current symptoms: fatigue pain ,joint pain, brain fog
Number of years since you developed symptoms of fibromyalgia: 14 years
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 14years
Describe the extent of your brain fog: I can make an appiontment in the morning for hair cut in afternoon and forget for 3 days. I can pull clothes from dryer and forget for most of day i didn't switch clothes from washer to dryer,forget to pay bills on time
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 are over whelmed
Do your doctors treat your symptoms individually or collectively: individually
Describe your experience with doctors: their eyes glazed over
What remedies or medications have you tried: lyrica cymbalta mobic embrel celebrex planquinal hydrocodon( self medicating) flexarel
What makes you feel better: lyrica wonderful but wieght gain 18lbs in 6 weeks and hands feet swelling had to come off
What makes you feel worse: to much stress , too much standing, walking to much,
Have you tried avoiding fluoride in your diet: no, took fluoride treatments at school
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: no not sure what that is
Have you tried any thyroid specific treatments: synthyriod
Your theories or comments:
Are we missing any important questions: I took fluoride treatments thru out my school years up until '79

 

07/24/2009
First Name: Lori
Age: 45
Male or Female: female
City: Ellwood City
State/Province: PA
Country: USA
How long have you lived there: 4 years
Where were you born: Washington, PA
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: yes
What is Your Line of Work: Self-employed as a writer.
How has Fibro affected your ability to work: I had to quit my office job because of chronic fatigue and pain. I was missing too many days.
How has Fibro affected your life:
What were your first symptoms: Always feeling tired, then I developed aching joints, loss of concentration and depression.
Your age at onset of symptoms: 25
How fast was your rate of decline: Slow, but advanced more rapidly after I had a bout of influenza that hospitalized me.
What are your current symptoms: Joint pain, fatigue, inability to recall information, difficulty concentrating, frequent migraines.
Number of years since you developed symptoms of fibromyalgia: 20
Do your symptoms include brain fog: yes!
Number of years since you developed the brain fog: 10
Describe the extent of your brain fog: On good days, almost non-existent, on bad days, I can barely concentrate long enough to get myself ready.
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: Some of both.
Describe your experience with doctors: Many were dismissive. The medications are often expensive and don't always work.
What remedies or medications have you tried: A variety of arthritis type medications, anti-depressants, pain relief compounds, physical therapy.
What makes you feel better: Usually hot showers, keeping warm and trying to do a bit of exercise every day. Naps in the afternoon help.
What makes you feel worse: A change in routine, stress.
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: No.
Have you tried any thyroid specific treatments: Doctors say it's not my thyroid.
Your theories or comments:
Are we missing any important questions:

 

07/23/2009
First Name: bonnie
Age: 66
Male or Female: female
City: collinsville
State/Province: virginia
Country: usa
How long have you lived there: all my life
Where were you born: here
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: JUST HOUSE WORK
How has Fibro affected your ability to work: NOT AT ALL
How has Fibro affected your life: JUST CAN'T HARDLY TURN MY NECK SOMETIMES
What were your first symptoms: STARTED FEELING SORE IN MY NECK MUSCLES AND THEN IT SPREAD ACROSS MY ENTIRE BACK IN THE MUSCLES AND LEGIMATES.
Your age at onset of symptoms: 64
How fast was your rate of decline: FAST
What are your current symptoms: JUST SORE IN MY BACK MUSCLES AND IN THE BACK OF MY NECK AND LEGIMATES
Number of years since you developed symptoms of fibromyalgia: 3 YEARS
Do your symptoms include brain fog: NO
Number of years since you developed the brain fog: NEVER
Describe the extent of your brain fog:
Estimate number of doctors you have seen for Fibro related symptoms: 1
Do your doctors tend to focus on all your Fibro symptoms: YES
Do your doctors treat your symptoms individually or collectively: I GO TO A CHAROPRACTOR
Describe your experience with doctors: HE WORKS ON MY BACK AND NECK, IT IS A GOOD HURT BUT IT NEVER GOES AWAY
What remedies or medications have you tried: NONE
What makes you feel better: HAVING A ADJUSTMENT
What makes you feel worse: WHEN I TRY TO TURN MY NECK
Have you tried avoiding fluoride in your diet: NO
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: NO
Have you tried any thyroid specific treatments: I TAKE A THYROID PILL EVERY DAY, I HAVE BEEN ON THEM FOR 40 YEARS
Your theories or comments: TELL ME WHAT ELSE TO DO.
Are we missing any important questions: NO

 

07/22/2009
First Name: Lisa
Age: 37
Male or Female: female
City: Waconia
State/Province: MN
Country: USA
How long have you lived there: 10 years
Where were you born: Rochester, 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: Retail Business Owner
How has Fibro affected your ability to work: always behind on things
How has Fibro affected your life: I have no life now.
What were your first symptoms: dull shoulder pain that wouldn't go away.
Your age at onset of symptoms: 34
How fast was your rate of decline: Hard to say, I have a high pain tolerance. However this last year it has worsen to some times untolerable.
What are your current symptoms: Major Fibro Fog, fatigue, achy arm and and legs.
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: 6 months
Describe the extent of your brain fog: Cant even function for a full day. Would lose my head if it wasn't attached to my body.
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 one does. The other two side it was stress.
Do your doctors treat your symptoms individually or collectively: Individually
Describe your experience with doctors: Previously I was dismissed. Now my current doctor actually listens to me and symptoms.
What remedies or medications have you tried: Lyrica, Lexpro, Celebrex, Cymbolta, Provigil, Naproxen, and a couple muscle relaxers.
What makes you feel better: Privigil as a god sent for my fibro fog. Haven't quite found anything for the pain. Still working on that one.
What makes you feel worse: Stress in my life really makes the flare-up very painful.
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, but have been researching them lately.
Your theories or comments:
Are we missing any important questions:

 

07/22/2009
First Name: SUSAN
Age: 45
Male or Female: FEMALE
City: BOAZ
State/Province: ALABAMA
Country: US
How long have you lived there: 10 YRS.
Where were you born: FORTPAYNE, 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: QUALITY CONTROL SHIPPING AND RECIEVING POULTRY PLANT COOLER
How has Fibro affected your ability to work: HARD TO WALK,CLIMB INTO THE TRUCKS,MAKE PODUCT CHECKS IN THE COOLER
How has Fibro affected your life: RUINED IT. I CAN NO LONGER HOLD MY GRANDCHILDREN OR CARE FOR MY MOTHER THE WAY I WANT TO.
What were your first symptoms: REOCCURING HEADACHES,ACHING MUSCLES TO THE POINT IT HURT TO BE TOUCHED,PAIN IN NECK,BACK,HIPS AND ARMS.
Your age at onset of symptoms: 15YRS
How fast was your rate of decline: IT STAYED THE SAME UNTIL I GOT PREGANT WITH MY FIRST CHILD,THEN WORSENED A SMALL AMOUNT ABOUT EVERY 2 TO 4 YRS.
What are your current symptoms: UNCONTROLED HEADACHES,NOT SLEEPING,STIFFENING OF MY MUSCLES,PAIN ON A LEVEL 8 OUT OF 10 EVERY DAY,JERKING AND TWICHING OF MY MUSCLES.
Number of years since you developed symptoms of fibromyalgia: 30
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: 7
Do your doctors tend to focus on all your Fibro symptoms: NONE DID UNTIL I SEEN DR.PERRY. HE HAS HAD ALOT OF EXPERIENCE WITH THIS PROBLEM.
Do your doctors treat your symptoms individually or collectively: BOTH
Describe your experience with doctors: BEFOR DR.PERRY IT WAS BAD.I WAS EVEN TOLD BY ONE DR. TO STOP WHINNING,THAT WOMEN WHINE TO MUCH. ANOTHER ONE TOLD ME IT WAS A FORM OF ARTHRITIS,AND ANOTHER TOLD ME IT WAS MY IMAGINATION.
What remedies or medications have you tried: PAIN PILLS,MUSCLE RELAXERS,ANTI-INFLAMMINATORYS,HOT PACKS,COLD PACKS,LIGHT THERAPY,POOL THERAPY,AND ANTI-DEPRESSANTS.
What makes you feel better: TO GET INTO A LUKE WARM HYDRO POOL
What makes you feel worse: ANY COLD ENVIROMENT,PUSHING,PULLING LIFTING MORE THAN 5 TO 10 LBS.WALKING LONG DISTANCES,CLIMBING STAIRS,STANDING STILL FOR EXTENDED PERIODS OF TIME
Have you tried avoiding fluoride in your diet: NO
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: NO,I AM A VEGATERIAN
Have you tried any thyroid specific treatments: NO,BUT HAD MY THYROID TESTED ALL RESULTS NORMAL
Your theories or comments:
Are we missing any important questions:

 

07/21/2009
First Name: Jennifer
Age: 61
Male or Female: Female
City: Christchurch
State/Province: CANTERBURY
Country: New Zealand
How long have you lived there: life
Where were you born: Christchurch
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: retailer
How has Fibro affected your ability to work: none
How has Fibro affected your life: I CAN'T DO GARDENING AS i USED TO
What were your first symptoms: PAIN IN LEFT SHOULDER
Your age at onset of symptoms: 59ISH
How fast was your rate of decline: SLOW
What are your current symptoms: PAIN FROM LOWER SHOILDER TO HEAD
Number of years since you developed symptoms of fibromyalgia: ONE
Do your symptoms include brain fog: YES
Number of years since you developed the brain fog: ONE
Describe the extent of your brain fog: I CAN'T THINK OF WORDS AND HAVE TO ASK SON
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: i ASKED HIM ABOUT THE PIN AND WITHOUT EXAMING ME HE TOLD ME IT WAS FIBRO
What remedies or medications have you tried: NONE
What makes you feel better: SELF MASSAGE
What makes you feel worse: CHOPPING FIREWOOD
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 HAVE HAD TO BECUASE OF HEART DISEASE
Have you tried any thyroid specific treatments: NO
Your theories or comments:
Are we missing any important questions: NO

 

07/20/2009
First Name: Linda
Age: 49
Male or Female: F
City: Redford
State/Province: MI
Country: USA
How long have you lived there: 43 yrs
Where were you born: Worcester, MA
Is this the first time you have taken our questionnaire: Yes
If not, why are you returning:
Are you still working: yes
What is Your Line of Work: Mental health counselor, professor (part time)
How has Fibro affected your ability to work: I have managed to find a job that I can sit for long periods of time, and also can go in late (I have a lot of difficulty with pain nad fatigue in the mornings).
How has Fibro affected your life: Fibro has stopped me from being as active as I would like to be, and has dictated the kind of career that I can work in. Also it forces me to make choices every day as to the amount of time and energy that I have, and the level of pain that I am willing to tolerate to get things done.
What were your first symptoms: I initially developed a stiff/sore neck during the afternoon on the 4th of July back in 1985. By evening my arms and hands, and especially my wrists, felt like they were on fire. Next morning the trunk of my body and my legs hurt, and I discovered that my feet were also very tender when I got out of bed and tried to walk on them. By the 3rd day the symptoms were gone, but then sometime that fall, they all came back "at once"; that is, they didn't slowly spread down my body like they had initially. Instead, I woke up feeling like I had the flu, felt very fatigued and muscle aches. My doctor had not heard of fibromyalgia at the time, so he did a blood test for arthritis and didn't find anything. He sent me home to take aspirin, but I took so much I started bruising. He never did diagnosis me on his own, but several years later I found an article about fibromyalgia and brought it in to him, then he agreed that this was probably what I had.
Your age at onset of symptoms: 25 years old
How fast was your rate of decline: Two days of progressive symptoms which went away, but came back all at once a few months later and did not leave.
What are your current symptoms: My fibromyalgia has subsided to the point where I feel the aches and feel fatigue (also brain fog) but I can function if I take it easy and pace myself. Some days are worse than others due to hormones, amount of sleep, weather, amount of time sitting, and how much I've overdone it the day before. I have occassional flare-ups that feel as bad as when I first got fibro, but other days I can feel almost normal. I always feel worse in the mornings.
Number of years since you developed symptoms of fibromyalgia: 24 years ago.
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 24 years ago.
Describe the extent of your brain fog: Some days I feel as though a part of my brain is still asleep, and is a few seconds behind whatever I am trying to think or say. I also have difficulty with memory issues, especially recall of specific "nouns".
Estimate number of doctors you have seen for Fibro related symptoms: 5 or 6
Do your doctors tend to focus on all your Fibro symptoms: A few have.
Do your doctors treat your symptoms individually or collectively: Collectively, that is, with meds that are supposed to work for fibromyalgia.
Describe your experience with doctors: Doctors initially didn't recognize it, or blamed the symptoms on other diseases or conditions (e.g., arthritis). My current doctor acknowledges that I have fibromyalgia, but I am not on any meds other than a mild narcotic pain reliever.
What remedies or medications have you tried: I have tried various antidepressants, but can't take them due to side effects. I have tried mobic but it left me feeling even more fatigued. I currently take a mild narcotic pain reliever.
What makes you feel better: A delicate balance between resting and moving around, which is very hard to accomplish some days. Getting between 7-8 hours of sleep, more makes me have more aches and less makes me more fatigued and foggy.
What makes you feel worse: Over-doing it or not getting enough sleep.
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: no
Have you tried any thyroid specific treatments: no
Your theories or comments: My theory is that I contracted some sort of virus that maybe invaded my central nervous system (hence the "traveling down the body" pain). I don't know why this initially went away and then came back at a later time, but it was definitely the start of my fibromyalgia.
Are we missing any important questions: Please focus more on the role the central nervous system plays, including any imbalances that are identified. I think that this is key to discovering what causes the pain and fatigue of fibromyalgia.

 

07/20/2009
First Name: TAMMIE
Age: 37
Male or Female: FEMALE
City: PIPE CREEK
State/Province: TX
Country: USA
How long have you lived there: ALL MY LIFE
Where were you born: UVALDE 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: DISABLED
How has Fibro affected your ability to work: I CAN NO LONGER WORK
How has Fibro affected your life: I AM ALWAYS TIRED AND ACHE ALL OVER
What were your first symptoms: BODY ACHE ALL OVER, FATIGUE, IRRITABLE BOWEL SYNDROME
Your age at onset of symptoms: 35
How fast was your rate of decline: MODERATE
What are your current symptoms: FATIGUE,IRRITABLE,ACHE ALL OVER,MOODY,
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: LAST COUPLE OF YEARS
Describe the extent of your brain fog: NOT TO BAD BUT ITS VERY IRRITATING FORGETTING ABOUT SIMPLE THINGS
Estimate number of doctors you have seen for Fibro related symptoms: 7
Do your doctors tend to focus on all your Fibro symptoms: I HAVE ONE PAIN MANAGEMENT DOCTOR I SEE NOW DR. URFRAN DARR
Do your doctors treat your symptoms individually or collectively: COLLECTIVELY
Describe your experience with doctors: UNTIL I FOUND MY DR. NOW IT WAS VERY DEPRESSING
What remedies or medications have you tried: LYRICA,EFFEXOR,FLEXIRIL,SOMA,FENTENYL,AND NUMEROUS OTHERS
What makes you feel better: THE FENTENYL PATCH SOMETIMES
What makes you feel worse: EVERYTHING
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:

 

07/18/2009
First Name: nancy
Age: 66
Male or Female: female
City: Sherkston
State/Province: Ontario
Country: Canada
How long have you lived there: life
Where were you born: toronto
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: no
What is Your Line of Work: retired, was contract masnager for multi-national company
How has Fibro affected your ability to work: yes, took early retirement at 52. unable to handle long hours and traveling.
How has Fibro affected your life: i've had it for years and functioned, albeit slowly, most of the time. very sleep deprived and often had to rest in afternoons.
What were your first symptoms: sleep disturbance and pain in the muscles if i did anything strenuous like raking etc.
Your age at onset of symptoms: 30 something
How fast was your rate of decline: slow, able to function well until 50
What are your current symptoms: very few, with the Lyrica. some tingling in extremities. pain on severe exertion. mood swings.
Number of years since you developed symptoms of fibromyalgia:
Do your symptoms include brain fog: not now but did.
Number of years since you developed the brain fog:
Describe the extent of your brain fog: forced early retirement because couldn't concentrate on very demanding job.
Estimate number of doctors you have seen for Fibro related symptoms: 10
Do your doctors tend to focus on all your Fibro symptoms: no but that was probably as much my fault as the doctors. i didn't necessarily tell them everything because i didn't put it all together either
Do your doctors treat your symptoms individually or collectively: individually
Describe your experience with doctors: not good. never received much help. most of them (especially males) dismissed my symptoms as not really there, or menopause, or neuralgia
What remedies or medications have you tried: otc pain killers, herbal sleep remedies, prescription tranquilizers (valium, attivan)
What makes you feel better: lyrica only drug that ever helped consistently but want to try natural remedies and wean off the drug. side effects sometimes severe (dizziness, dry mouth, mood swings, irritability) and very expensive. senior drug coverage not available for this particular drug. costs 100 plus dollars a month
What makes you feel worse: stress, changes in routine,
Have you tried avoiding fluoride in your diet: no but live in rural area with well water, not fluordated
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:

 

07/16/2009
First Name: Margaret
Age: 56
Male or Female: female
City: Charlotte
State/Province: NC
Country: US
How long have you lived there: 56 years
Where were you born: Lancaster SC
Is this the first time you have taken our questionnaire:
If not, why are you returning:
Are you still working: yes
What is Your Line of Work: housekeeping
How has Fibro affected your ability to work: yes
How has Fibro affected your life: Brainfog is very debilitating.I feel as if i'm losing my mind. Light sensitivity is bad also.
What were your first symptoms: pain in shoulders,neck,arms.later in my legs, hips, wrists,feet swelling in feet
Your age at onset of symptoms: 52
How fast was your rate of decline: gradual
What are your current symptoms: brainfog,fatigue less pain
Number of years since you developed symptoms of fibromyalgia: four years
Do your symptoms include brain fog: yes (mainly) .
Number of years since you developed the brain fog: 1
Describe the extent of your brain fog: I feel like i'm losing my mind
Estimate number of doctors you have seen for Fibro related symptoms: 2
Do your doctors tend to focus on all your Fibro symptoms: I'm not sure.vev
Do your doctors treat your symptoms individually or collectively: collectively
Describe your experience with doctors: 1st Dr was not sensitive to me.
What remedies or medications have you tried: ultram,lyrica,trazedone none worked
What makes you feel better: I don't know.
What makes you feel worse: exposure to sun
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: It is very stressful when people don't take you serious.
Are we missing any important questions: none that i can think of.

 

07/16/2009
First Name: Julie
Age: 38
Male or Female: Female
City: Menomonee Falls
State/Province: WI
Country: USA
How long have you lived there: 38yts
Where were you born: Milwaukee
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: phlebotomy
How has Fibro affected your ability to work: Yes, It makes all tasks harder.
How has Fibro affected your life: Family does not always understand what it really feels like. Makes most thing harder due to pain and fatigue. The pain is unpredictable.
What were your first symptoms: Headaches
Your age at onset of symptoms: 4
How fast was your rate of decline: slow
What are your current symptoms: stiff muscles, triggerpoints allover body, headaches, mucle aches , hot flashes, burn and numbness in muscles, Muscle knots Number of years since you developed symptoms of fibromyalgia: ?
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 6 +
Describe the extent of your brain fog: Minor-sometimes fell like I am living outside watching. light forgetfullness,clumbsy
Estimate number of doctors you have seen for Fibro related symptoms: 4
Do your doctors tend to focus on all your Fibro symptoms: yes
Do your doctors treat your symptoms individually or collectively: collectively
Describe your experience with doctors: excellent- wonderful doctors and care however symptoms are flared and they are looking for more causes in my case
What remedies or medications have you tried: cymbalta,skelaxin,pain meds,
What makes you feel better: cymbalta skelaxin, stretching, diet, exercise
What makes you feel worse: exercise stretching too much sugar carbs
Have you tried avoiding fluoride in your diet: yes
If so, which sources of fluoride: water
Have you made dietary changes to avoid any other neutrotoxins: sugar carbs pesticides nutrasweet
Have you tried any thyroid specific treatments: tested- ok on thyroid
Your theories or comments:
Are we missing any important questions:

 

07/16/2009
First Name: Julie
Age: 38
Male or Female: Female
City: Menomonee Falls
State/Province: WI
Country: USA
How long have you lived there: 38yts
Where were you born: Milwaukee
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: phlebotomy
How has Fibro affected your ability to work: Yes, It makes all tasks harder.
How has Fibro affected your life: Family does not always understand what it really feels like. Makes most thing harder due to pain and fatigue. The pain is unpredictable.
What were your first symptoms: Headaches
Your age at onset of symptoms: 4
How fast was your rate of decline: slow
What are your current symptoms: stiff muscles, triggerpoints allover body, headaches, mucle aches , hot flashes, burn and numbness in muscles, Muscle knots Number of years since you developed symptoms of fibromyalgia: ?
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 6 +
Describe the extent of your brain fog: Minor-sometimes fell like I am living outside watching. light forgetfullness,clumbsy
Estimate number of doctors you have seen for Fibro related symptoms: 4
Do your doctors tend to focus on all your Fibro symptoms: yes
Do your doctors treat your symptoms individually or collectively: collectively
Describe your experience with doctors: excellent- wonderful doctors and care however symptoms are flared and they are looking for more causes in my case
What remedies or medications have you tried: cymbalta,skelaxin,pain meds,
What makes you feel better: cymbalta skelaxin, stretching, diet, exercise
What makes you feel worse: exercise stretching too much sugar carbs
Have you tried avoiding fluoride in your diet: yes
If so, which sources of fluoride: water
Have you made dietary changes to avoid any other neutrotoxins: sugar carbs pesticides nutrasweet
Have you tried any thyroid specific treatments: tested- ok on thyroid
Your theories or comments:
Are we missing any important questions:

 

07/15/2009
First Name: juan
Age: 37
Male or Female: female
City: Bridgetown
State/Province: Bridgetown
Country: Barbados
How long have you lived there: 38 yrs
Where were you born: Barbados
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: yes
What is Your Line of Work: Office
How has Fibro affected your ability to work: fatigue
How has Fibro affected your life: tired and difficulty concentrating
What were your first symptoms: pain in the neck
Your age at onset of symptoms: 33
How fast was your rate of decline:
What are your current symptoms: pain in neck and shoulders. Fatigue
Number of years since you developed symptoms of fibromyalgia: 4 years
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 1
Describe the extent of your brain fog: mild to moderate
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: blood work and advise me to do lots of excercise
What remedies or medications have you tried: lyrica
What makes you feel better: when I lie down
What makes you feel worse: I really don't know
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: no
Have you tried any thyroid specific treatments: no
Your theories or comments: I just want to feel better
Are we missing any important questions:

 

07/15/2009
First Name: ann
Age: 53
Male or Female: female
City: suwanee
State/Province: georgia
Country: usa
How long have you lived there: 20 years
Where were you born: west virginia
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: no
What is Your Line of Work: registered nurse
How has Fibro affected your ability to work: can't think well, can't do math well, to fatigued to do much more than daily activities of living. a lot of pain in my muscles,so unable to stand or walk much.
How has Fibro affected your life: i am basically home bound, i've lost most of my friends and family. can't do much for myself, my husband has to help me grocery shop, and everything else i use to do. he is so tired he can't hardly think. my family is suffering along with me. i can't work, i can't go on trips, i drive very little. but i do continue to hope
What were your first symptoms: difficulty swallowing/ a lump in my throat, pain in my leg muscles, then all my muscles like i had the flu, anxiety attacks especially in loud places, like bowling allies and movies.
Your age at onset of symptoms: 46
How fast was your rate of decline: became ill in june 2001 and lost my job by oct 2004. i was very sick when i lost my job. one symptom at a time just kept adding to the last one.
What are your current symptoms: extreme fatigue, weakness, brain fog, difficulty remembering, generalized muscle pain like i have the flu all the time, ringing in my ears, poor sleep, loud noises or music or television puts my brain on lock down. i can't think around loud noises then i get anxious. abdominal rash of unknown origin, personality changes, loss of patience, extra anger, easily speak mean things to people, heart fluttering, mild asthma, short of breath with minimal walking, have to eat small meals, if i eat sugar it makes pain worse, diarrhea, bad migraines, depression, lack of interest in most things, dry skin,
Number of years since you developed symptoms of fibromyalgia: 8
Do your symptoms include brain fog:
Number of years since you developed the brain fog: 6
Describe the extent of your brain fog: cannot concentrate for long, can't understand some tv programs, forget who characters are in a book, forget dates, cannot do any but basic math, i ask the same questions to people a few days after i asked it already, cannot understand "new" things well, it takes me two or three times before i can learn something new. like i tried to figure out how to crochet a granny sqare and i had to just give up.
Estimate number of doctors you have seen for Fibro related symptoms: 45
Do your doctors tend to focus on all your Fibro symptoms: no they think i'm depressed
Do your doctors treat your symptoms individually or collectively: collectively, the ignore me mostly
Describe your experience with doctors: being a nurse i saw doctors that i had worked with and who respected me and they told me i was just depressed. they kept sending me from one doctor to another for specific complaints, but then when they talked on they phone the decided i was just depressed. they were are still are clueless
What remedies or medications have you tried: i am sorry there are to many to list. dr richie shoemakers regime, and then the fibromyalgia and fatigue centers regimin.
What makes you feel better: pain medication, heparin, nedmenda, thyroid helped a little, warm showers help
What makes you feel worse: ssri's, sugar, to much activity, stress, chocolate, loud noises,
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 t3 and t4 has helped a little
Your theories or comments: i feel like a have a post viral syndrome like mono. something has turned on my immune system and it can't turn itself off. my compliments ie c3a and c4a are like 14,000. possible black mold toxity because symptoms begain right after i changed jobs and started working in an old musty building. i had a cold and right after that i began having difficulty swallowing, it's like i had a stroke in my swallowing area, another therory is that my hypothalmus is fried. my msh level needs to be increased before i get better. msh is not avialable in the us at this time or i would try it.
Are we missing any important questions: probly but i can't remember, lol

 

07/13/2009
First Name: Kim
Age: 37
Male or Female: Female
City: McKinleyville
State/Province: CA
Country: United States
How long have you lived there: 20 years
Where were you born: Escondido, CA
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: need to move around often need to set up supportive seating
How has Fibro affected your life: Good days and bad days Difficulty with daily tasks - it hurts to get dressed or turn my head to back my car out
What were your first symptoms: Muscle pain and stiffness in the neck and shoulders
Your age at onset of symptoms: 24?
How fast was your rate of decline: gradual over 10 years or so
What are your current symptoms: muscle pain and stiffness, tender points, fatigue
Number of years since you developed symptoms of fibromyalgia: 15
Do your symptoms include brain fog: no
Number of years since you developed the brain fog:
Describe the extent of your brain fog:
Estimate number of doctors you have seen for Fibro related symptoms: 3
Do your doctors tend to focus on all your Fibro symptoms: no
Do your doctors treat your symptoms individually or collectively: collectively, generally, broadly
Describe your experience with doctors:
What remedies or medications have you tried: amitriptyline, cymbalta
What makes you feel better: being in a dry warm climate, massage, ibuprofen, cymbalta
What makes you feel worse: cold, stress, being startled or bumped into
Have you tried avoiding fluoride in your diet: no but it is not in our water
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins:
Have you tried any thyroid specific treatments: T3, no difference
Your theories or comments: lack of proper cellular respiration during sleep, lack of vitamin D, I wonder how many other former gymnasts have chronic conditions?
Are we missing any important questions:

 

07/13/2009
First Name: Jenna
Age: 29
Male or Female: Female
City: Mesa
State/Province: AZ
Country: USA
How long have you lived there: 4 yrs
Where were you born: Alaska
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: I'm not able to work anymore.
How has Fibro affected your life: It feels like my life was taken from me.
What were your first symptoms: I've had my symptoms show up my whole life one at a time, but the MOST debilitating first symptoms were the sensitive skin, muscle pain, joint pain and tender spots.
Your age at onset of symptoms: 26
How fast was your rate of decline: 3 yrs
What are your current symptoms: Intense all over body pain in the bones, joints and hard-as-rock muscles, stiffness, fatigue, sensitive skin and scalp, insomnia, depression....list goes on and on.
Number of years since you developed symptoms of fibromyalgia: My whole life. But disabling symptoms started 3 yrs ago.
Do your symptoms include brain fog: Yes
Number of years since you developed the brain fog: 1 yr
Describe the extent of your brain fog: Difficulty remembering words, people, names, places, memories, reading, processing information in my brain, typing.
Estimate number of doctors you have seen for Fibro related symptoms: 3
Do your doctors tend to focus on all your Fibro symptoms: Not at all.
Do your doctors treat your symptoms individually or collectively: They pick like 2 symptoms and treat that.
Describe your experience with doctors: They would try to convince me I had arthritis at first and no doctor ever had but 5 mins to see me and ordered the same tests over and over. I had nurses that treated me better.
What remedies or medications have you tried: Zoloft, Morphine, Percocet, Ultram ER, Ultram Tablets, Promethazine, Lyrica, Doxepin, Steroids, otc pain meds and anti-inflammitory, acai trace mineral juice, Alive juice, Acai Plus juice, Lecithin, Acidopholus, MSM and Malic Acid, Grape Seed Extract, Apple Cidar Vinegar.
What makes you feel better: Right now the Ultram Tablets and the Lyrica have been lifesavers so far. It takes away 90 percent of my pain.
What makes you feel worse: Everything else I've tried.
Have you tried avoiding fluoride in your diet: yes
If so, which sources of fluoride: toothpaste, water.
Have you made dietary changes to avoid any other neutrotoxins: I've gone on a vegetarian diet.
Have you tried any thyroid specific treatments: No my thyroid is normal.
Your theories or comments: Fibromyalgia is impossible to diagnose with only one or two symptoms, the sad thing is that it has to evolve to the point where your nearly incapacitated to get diagnosed and by then you will have suffered for years. The outlook seem grim for anyone just diagnosed and it's usually accompanied by more health problems. I think Fybromyalgia sufferers need an advocate or more awareness made so that the people who don't have this stop thinking its psychosomatic and take us seriously. I look normal but I have the body of an ill 80 yr old. I feel like if I were older, or look more a mess I would've been taken seriously. I don't like being treated like a criminal on the hunt for prescription drugs just so I can get high. People and doctors need to know that the pain we go through is horrendous and like hell on earth everyday.
Are we missing any important questions: Not that I can think of.

 

07/12/2009
First Name: Frank
Age: 40
Male or Female: male
City: Stratford
State/Province: CT
Country: United States
How long have you lived there: 22yrs
Where were you born: Bridgeport, CT partime
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: driver/laborer
How has Fibro affected your ability to work: I can't sit in the driver position for more than 45 mins. All objects are heavier than they are. Any strenuous physical work or leisure makes the body or area used seems to agitate the ache into pulsating or spasm pain therefore making me weak for aperiod of time untill I '' what I call relaxing the pain,'' lay or sit down and relax the body.
How has Fibro affected your life: In the most negative way you can imagine. It hurts to exist, never mind play guitar, ride motorcycle, play video games etc, etc.
What were your first symptoms: stiffness of my spine and legs while driving then the pain to walk after wards.
Your age at onset of symptoms: 35
How fast was your rate of decline: 5years later
What are your current symptoms: full body aches and pains allways, Random pain spasms,
Number of years since you developed symptoms of fibromyalgia: 5yrs
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 21/2yrs
Describe the extent of your brain fog: I feel like I can't think anymore
Estimate number of doctors you have seen for Fibro related symptoms: 7
Do your doctors tend to focus on all your Fibro symptoms: not at first
Do your doctors treat your symptoms individually or collectively: collectively
Describe your experience with doctors: no answers just the every new med for it, which are just remedies
What remedies or medications have you tried: amyltriptilyne, cymbalta, nortriptilyne and always 4 aleeve in the morning inorder to numb up for the day
What makes you feel better: to be in a coma type sleep
What makes you feel worse: to be alive and active
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: first time I heard of this
Have you tried any thyroid specific treatments: no
Your theories or comments: My spine seems to be the most concentrated area that hurts the most and all the time from head to lower back. That is why I am looking to donate my body for the research and studies of fibromyalgia. I don't think I can do this for long.
Are we missing any important questions:

 

07/11/2009
First Name: Renee
Age: 53
Male or Female: female
City: Bowie
State/Province: Maryland
Country: USA
How long have you lived there: 20years
Where were you born: Washington,D.C.
Is this the first time you have taken our questionnaire: Yes
If not, why are you returning:
Are you still working: No
What is Your Line of Work: Childcare Provider
How has Fibro affected your ability to work: No energy to keep up the pace.
How has Fibro affected your life: My mind says go but my body says no!
What were your first symptoms: I cant say what was the first because I know I have been very sore since a child ,but thought everybody had aches and pains!My first clue that something was really wrong was at foot pedicure place.
Your age at onset of symptoms: 9 years old
How fast was your rate of decline:
What are your current symptoms: shoulder acheness,extreme fatigue depression,brain fog,spasms in my anal area,crotch area spasms,gerd pain,weak arm with a pulling vein feeling,constant urination,trouble sleeping all night,tenderness especially over the top of my knees and oover my leg sockets.
Number of years since you developed symptoms of fibromyalgia: ten years
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: three
Describe the extent of your brain fog: Its so extremly frightning ,like when you buy something and then come across it already on the shelf and dont ever recall buying it, or you are talking to someone about a person you know of well and in the conversation you are trying to put a face on that name! Forgetting what you came downstairs for and just give up and go back upstairs.On a road at night you have driven a thousand times and for a moment you feel lost. You feel angry at yourself when you loose control of what you feel like you should know. It makes you not trust yourself with real responsibilities.
Estimate number of doctors you have seen for Fibro related symptoms: 1
Do your doctors tend to focus on all your Fibro symptoms: No, She doesnt believe me.
Do your doctors treat your symptoms individually or collectively: individually
Describe your experience with doctors: I a total waste of time. I will be seeing a specialist next month.
What remedies or medications have you tried: none
What makes you feel better: hot showers
What makes you feel worse: working to fast
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride: does not apply
Have you made dietary changes to avoid any other neutrotoxins: little sugar, few bar drinks,soymilk,
Have you tried any thyroid specific treatments: none
Your theories or comments: I look forward to seeing a doctor that can comfirm my diagnosis.
Are we missing any important questions:

 

07/09/2009
First Name: Ed
Age: 51
Male or Female: male
City: Pittsburgh
State/Province: PA
Country: USA
How long have you lived there: 51 years
Where were you born: Same place
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 artist
How has Fibro affected your ability to work: makes my arms and wrists hurt, brain fog makes me lack concentration.
How has Fibro affected your life: I have no energy to do things. I'm really apathetic about that, too. I forget things like paying bills, etc.
What were your first symptoms: sore fingers
Your age at onset of symptoms: 35
How fast was your rate of decline: slow.
What are your current symptoms: aches, pains, brain fog, apathy, lack of concentration, IBS, sleep disorders, sweating
Number of years since you developed symptoms of fibromyalgia: 15
Do your symptoms include brain fog: YES!!!
Number of years since you developed the brain fog: I don't know
Describe the extent of your brain fog: I forget what I'm doing, what I went in a room for, sometimes it feels like I'm warm and fuzzy, like I'm not actually here, like my head is full of cotton.
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: None of them seem to understand the problem. They just treat the symptoms
What remedies or medications have you tried: analgesics, antidepressants, over the counter remedies
What makes you feel better: rest
What makes you feel worse: tension, driving, loud noises, confusion
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride: none
Have you made dietary changes to avoid any other neutrotoxins: no
Have you tried any thyroid specific treatments: no
Your theories or comments: I think it's all from my exposure to chemicals when I was a young man. I worked in a printing plant and was daily (for 3 years at least) exposed to methyl-ethyl ketones, Stoddard solvent, lacquers, enamels, paints, inks, and other chemicals.
Are we missing any important questions: no

 

07/09/2009
First Name: jayne
Age: 30
Male or Female: female
City: newcastle upon tyne
State/Province: tyne and wear
Country: england
How long have you lived there: 30 years
Where were you born: newcastle upon tyne
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: in every aspect.
How has Fibro affected your life: as above
What were your first symptoms: leg pains when i was 15,was told they were growing pains.
Your age at onset of symptoms: 15
How fast was your rate of decline: average
What are your current symptoms: usual pain of fibro migraines tmjd ibs brain fog although i feel like ive dementia!
Number of years since you developed symptoms of fibromyalgia: not sure
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: so much so that i havent got a clue what to type
Estimate number of doctors you have seen for Fibro related symptoms: lost count
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. i dont understand how there has been hardly any research carried out on f/m?? they make me feel lke a fraud every time i see a g.p.
What remedies or medications have you tried: amitripiline codiene paracetamol tramadol dichlophenac lophapramine
What makes you feel better: dichlophenac takesthe edge of my pain
What makes you feel worse: tramadol
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: ive just found out about toxins affecting f/m
Have you tried any thyroid specific treatments: no
Your theories or comments: the more i read up on past illnesses and toxins,he more i believe they have something to do with f/m
Are we missing any important questions: no

 

07/09/2009
First Name: linda
Age: 54
Male or Female: female
City: sharonville
State/Province: cincinnati
Country: hamilton
How long have you lived there: 7 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: housecleaning
How has Fibro affected your ability to work: cant do it anymore
How has Fibro affected your life: limet doing anything
What were your first symptoms: lower back pain and leggs great deal of pain
Your age at onset of symptoms: 39
How fast was your rate of decline: pretty fast and it stop me from doing what i loved to do
What are your current symptoms: bearly able to walk or do anything because swelling feet and great deal of pain all the time
Number of years since you developed symptoms of fibromyalgia: 8 years ago
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 3
Describe the extent of your brain fog: cant remember and forget a lot
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 they worrie more about my weight then how they can treat not the pain but what pain mangement can do
Do your doctors treat your symptoms individually or collectively: they have sent me pain manegment and the shots do not work so now i dont know where to turn
Describe your experience with doctors: i have asked them what and where to turn with this
What remedies or medications have you tried: nerve blocks and shots in lower back which i did not get relieve afterwhere
What makes you feel better: not a lot back leggs hips arms pain never lets up
What makes you feel worse: walking seating laying down
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: na
Have you tried any thyroid specific treatments: no
Your theories or comments: na
Are we missing any important questions: i just need some kind of relieve because lyrica 75 mg and dosent stop the pain

 

07/09/2009
First Name: Paula
Age: 60
Male or Female: Female
City: Brisbane
State/Province: Queensland
Country: Australia
How long have you lived there: 40 years
Where were you born: Brisbane
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: Somewhat
How has Fibro affected your life: Greatly
What were your first symptoms: Tender spots all over body
Your age at onset of symptoms: 50
How fast was your rate of decline: Quick
What are your current symptoms: Painful feet, Tender spots all over, Fatigue, Brain fog, Sleep problems
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: 5
Describe the extent of your brain fog: Sometimes severe. I'll stop mid-sentence trying to remember what I'm about to say. I have become lost in familiar areas. I work with fugures on the computer & have to really concentrate.
Estimate number of doctors you have seen for Fibro related symptoms: 5
Do your doctors tend to focus on all your Fibro symptoms: Not really
Do your doctors treat your symptoms individually or collectively: Individually
Describe your experience with doctors: Not very sympathetic...some quite patronising.
What remedies or medications have you tried: Physio, Acupuncture, TCM,Bowen Therapy, Pilates, Rheumatologist, Massage,etc. etc.
What makes you feel better: Not much.I can't sit or lie down for too long. I'm a bit better when I move around for a while, but then I'm exhausted & have to sit or lie.
What makes you feel worse: Sitting for too long.
Have you tried avoiding fluoride in your diet: No
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: Have given up aspartame, wheat & dairy.
Have you tried any thyroid specific treatments: Have been on thyroid replacemnet for 30 years.
Your theories or comments: Because of my thyroid condition I find it extremely hard to lose weight & have considered surgery. My naturopath now has me taking Progesterone to increase my very low levels.
Are we missing any important questions:

 

07/08/2009
First Name: Lin
Age: 52
Male or Female: Female
City: Svelville
State/Province: NY
Country: US
How long have you lived there: 2 years
Where were you born: New York
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: admin asst
How has Fibro affected your ability to work: yes and no
How has Fibro affected your life: pain all the time joints going out of sockets fingers malfunctioning
What were your first symptoms: fingers joints painful and began locking with limiting range of movement
Your age at onset of symptoms: 51
How fast was your rate of decline: started in hands a year and a half ago andf now all parts of my body are nvolved with the pain
What are your current symptoms: right foot difficult to stand on it and use it normally. Feels like the toes or some bone connecting them to the rest of the foot is out of joint, but this is what has progressively happening to my entire body. I wake in the morning in extreme pain..every day! it is just simply unbelievable
Number of years since you developed symptoms of fibromyalgia: 1.5
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 1
Describe the extent of your brain fog:
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: limit diet to healthy foods
What makes you feel better: walking in the forest
What makes you feel worse: everything
Have you tried avoiding fluoride in your diet: hmm..no?
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: yes, organics are a staple
Have you tried any thyroid specific treatments: no
Your theories or comments: I need metals and toxins removed from my body
Are we missing any important questions: Not sure at this point.

 

07/06/2009
First Name: carolyn
Age: 61
Male or Female: female
City: bridgeport
State/Province: ohio
Country: usa
How long have you lived there: 7 years
Where were you born: bucyrus 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: worked in a hospital
How has Fibro affected your ability to work: yes
How has Fibro affected your life: yes
What were your first symptoms: pain in back and calves of legs
Your age at onset of symptoms: 50
How fast was your rate of decline: the last two years it seems to be going very fast
What are your current symptoms: extreme pain in back hip all the way down right leg. very hard to get up and down from chairs or bed etc.
Number of years since you developed symptoms of fibromyalgia: 11
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 3
Describe the extent of your brain fog: hard to concentrate on anything for very long. remembering things is getting harder. i love to sew and read and it does get very irriatating when after half an hour i just give up
Estimate number of doctors you have seen for Fibro related symptoms: 1
Do your doctors tend to focus on all your Fibro symptoms: yes she gave me lyrica but that did absolutely nothing. i have tried numerous rubs and pills but nothing seems to help. husband out of work so i can not go to any health clubs etc.
Do your doctors treat your symptoms individually or collectively: individually
Describe your experience with doctors: just kind of look at you weird of course. i am over weight since the pain has gotten worse and i quit smoking two years ago. so naturally she is constantly telling me to lose. i try to walk and move around as much as possible but then it seems like i can't do anything for a few days. today is a really bad day. sorry
What remedies or medications have you tried: tylenol ibuprofen lyrica numerous creams,rubs and liquid products
What makes you feel better: taking a sleeping pill at nite for rest. as soon as i'm up though pain is back in full force within thirty minutes.
What makes you feel worse: if you are talking meds nothing they just don't work. sitting down,walking down steps,standing or walking on cement. kind of hard to do anything without that happening.
Have you tried avoiding fluoride in your diet: no why
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: no what are neurotoxins
Have you tried any thyroid specific treatments: doctor said thyroid is ok had test done
Your theories or comments: i would just like to find something to get me out of this pain. had to have a 8mm kidney stone removed in march. doctor gave me oxycodone for the pain (it was horrible). the amazing part was that after they blasted the stone away i still had two days of the oxycodone left and i had no pain what so ever. i could walk up and down steps bend over to put on shoes everything. but once that wore off i'm back to all the pain again and of course they won't give me a prescription for it.
Are we missing any important questions: i don't think so. i just wish there was something out there that didn't cost so much but really worked. god bless

 

07/02/2009
First Name: Maryanne
Age: 56
Male or Female: Female
City: Petal
State/Province: MS
Country: USA
How long have you lived there: 5 years
Where were you born: Hattiesburg, MS
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: no
What is Your Line of Work: I was a teacher. I retired.
How has Fibro affected your ability to work: I have little energy and a lot of pain so even simple chores take longer
How has Fibro affected your life: four years
What were your first symptoms: pain and stiffness all over
Your age at onset of symptoms: 53
How fast was your rate of decline: slow
What are your current symptoms: fatigue, pain, sleeplessness, weight gain, depression
Number of years since you developed symptoms of fibromyalgia: four
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: two
Describe the extent of your brain fog: I am forgetful, I can't concentrate on any one task, I can't remember simple words in a conversation or names I should be able to remember.
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: First doctor showed concern and helped by offering different medications. Second doctor is now concentrating on hormone levels as a method of helping with pain.
What remedies or medications have you tried: cymbalta, lyrica, neurontin, ultram, massage therapy, aqua therapy, heat therapy, contend machine, peppermint oil, bengay
What makes you feel better: using the contend machine with electric nodes on parts of body, bengay, peppermint oil
What makes you feel worse: staying in one position too long--trying to sleep at night
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, gave up artificial sweetners
Have you tried any thyroid specific treatments: no
Your theories or comments: none
Are we missing any important questions: no

 

07/01/2009
First Name: Irene
Age: 70
Male or Female: female
City: Sydney
State/Province: NSW
Country: Australia
How long have you lived there: 40 years
Where were you born: Scotland
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: teaching
How has Fibro affected your ability to work: Impossible to worksince 1994
How has Fibro affected your life: Devastated my life
What were your first symptoms: general fatige, hair loss
Your age at onset of symptoms: had symptoms all my life
How fast was your rate of decline: sudden intense back spasms
What are your current symptoms: muscle pain, insomnia, irritable bowel syndrome, hot flushes, hair loss, weight gain, sinus, chronic throat irritation and dry cough, anal fissures and genital discomfort, and many other minor symptoms
Number of years since you developed symptoms of fibromyalgia: this current illness 13 years
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: often have difficulty in remembering a word or name,improving
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: hopeless
What remedies or medications have you tried: pain killers eg aspirin, Nurofen and Panadol and heat rubs
What makes you feel better: Bed rest, hot weater bottle and aspirin
What makes you feel worse: exercise and tension
Have you tried avoiding fluoride in your diet: yes for the last 6 weeks
If so, which sources of fluoride: tap water
Have you made dietary changes to avoid any other neutrotoxins: yes processed meat containing sodium nitrates and nitrites
Have you tried any thyroid specific treatments: no
Your theories or comments: Absolutely convinced the processed meat is the cause as the illness returned after I included a large amount for 2 years about 1992 at which time I was in perfect health.
Are we missing any important questions: My muscle pain has followed a pattern of moving downwards in 3 year stages and at present is in my hip and pelvic area as it did the previous time I had the condition.I fully expect to recover from this condition if I live long enough. Great to hear that someone is interested.

 

07/01/2009
First Name: Shirley
Age: 58
Male or Female: Female
City: Edmonton
State/Province: Alberta
Country: Canada
How long have you lived there: 58 Years
Where were you born: Edmonton
Is this the first time you have taken our questionnaire: Yes
If not, why are you returning:
Are you still working: No
What is Your Line of Work: Retired Police Officer
How has Fibro affected your ability to work: Cannot work
How has Fibro affected your life: I am constantly in pain. I am fatigued to the level of where I am not motivated to do anything. I have no motivation to perform any task or leave the house for that matter. It is an effort to put on make-up and go out and meet with a friend.
What were your first symptoms: Migraine Headaches Fatigue and sore muscles.
Your age at onset of symptoms: 33-34
How fast was your rate of decline: Fairly Quickly
What are your current symptoms: Constant pain and fatigue. Restless Leg Syndrome
Number of years since you developed symptoms of fibromyalgia: 25 years
Do your symptoms include brain fog: Yes
Number of years since you developed the brain fog: 15 Years
Describe the extent of your brain fog: Progressively gets worse as the day goes on. Extremely bad at the end of the day and into the evening.
Estimate number of doctors you have seen for Fibro related symptoms: 5-7
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: My GP tends to minmimize my symptoms and simply suggests that I exercise and go to the gym. My Diagnosing Specialist advised me that he had no time for further visits because he is too busy. My second Specialist says, "come and see me whenever feel a need", but it takes 2-3 months due to his very busy practice. Most doctors that I initially seen in the mid 80's had to idea what was wrong with me. In fact, one Neurologist concluded in this reporting back to my referring doctor that I was suffering from "hypochondriacism"!
What remedies or medications have you tried: None.
What makes you feel better: Nothing.
What makes you feel worse: Dealing with situations that I always consider stressful, but really are not. I worry about everyone else's problems. Not getting enough rest and that is difficult because I do not know what it is like to sleep for more than 2-3 hours at a time.
Have you tried avoiding fluoride in your diet: No, no one ever told me to do this!
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, because I now have an under active thyroid. I currently take Synthroid.
Your theories or comments: While working as a police officer, I was kicked at the back of the head while transporting a very violent prisoner to Cells. I have never been the same since that trauma to the back of the head. This occurred in 1981, and I was not properly dianoised until 2001.
Are we missing any important questions: What do you feel has caused Fibromyalgia?

 

07/01/2009
First Name: Charlotte
Age: 60
Male or Female: female
City: Ingersoll
State/Province: Ontario
Country: Canada
How long have you lived there: 5 years
Where were you born: London Ontario 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:
How has Fibro affected your ability to work: yes
How has Fibro affected your life: yes
What were your first symptoms: Unexplain pain in diferent pats of my body at diferent times
Your age at onset of symptoms: thirty
How fast was your rate of decline: not bad till late forties
What are your current symptoms: pain, fatiuge allways guilt be cause I am not doing what I should be doing
Number of years since you developed symptoms of fibromyalgia: thirty yaers
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 3
Describe the extent of your brain fog: I forget simple words to discribe thing and what I did the day befor
Estimate number of doctors you have seen for Fibro related symptoms: 1 doctor specialist for fibro seen once
Do your doctors tend to focus on all your Fibro symptoms: no
Do your doctors treat your symptoms individually or collectively: individually
Describe your experience with doctors: some do not believe in fibro one doctor prscibed Lyrica but it did not help it put bad thoughts in my head
What remedies or medications have you tried: Lyrica, phecet shots Furinal
What makes you feel better: at this point I do not know
What makes you feel worse: having to do thing when I amnot up to it
Have you tried avoiding fluoride in your diet: always
If so, which sources of fluoride: tap water,pesticides ?
Have you made dietary changes to avoid any other neutrotoxins: most days I am just glad I eat in the past was always conciuse of what I ate
Have you tried any thyroid specific treatments: yes now taking low does of El Troxin 0.1mg
Your theories or comments: there has to be some thing that I coud do or take to help my self
Are we missing any important questions: I was a very active livly but the last seven or more years have got the best of me!

 

 

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March 5 - March 19, 2007
February 13 - March 1, 2007
January, 2007 - February 12, 2007
August, 2006 - January, 2007
August 22, 2006
June - August 6, 2006
April - May, 2006
February - March, 2006
November, 2005
September - November 2005

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