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Fibromyalgia Questionnaire & Results

Latest Update: 11/19/2009 

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31 QUESTIONNAIRE COMPLETED DATA FORMS FOR November 2008

11/30/2008
First Name: michelle
Age: 56
Male or Female: F
City: Cambridge
State/Province: Cambridgeshire
Country: UK
How long have you lived there: 56 yrs
Where were you born: Lancashire
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: no/ sometimes
What is Your Line of Work: was chef..... now driving .
How has Fibro affected your ability to work: Drive part time because I need the money. Otherwise I don't even want to walk to the shops.I can't stand up for long, and I can;t carry heavy things.
How has Fibro affected your life: I am weak, tired, miserable and in constant pain. I used to ride horses and was super fit, and even very supple.
What were your first symptoms: Stiffness, tiredness, flabbiness and weight out of my control.feeling cold.
Your age at onset of symptoms: 48 yrs.
How fast was your rate of decline: Struggled to maintain status quo for 4 yrs, then gave in through crushing menopause. gained one stone per year since I was 50, and am nearly immobile now. Also have thoracic disc degeneration, and other discs going now as I write !
What are your current symptoms: ALL OF THE ABOVE.ALL OF THE TIME. And worsening.
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: 6
Describe the extent of your brain fog: At times to start with, I used to walk round shaking my head, tring to clear it. At this stage I an suffering from pituitary tumour and have constant headaches so cant tell.
Estimate number of doctors you have seen for Fibro related symptoms: 6
Do your doctors tend to focus on all your Fibro symptoms: no, one at a time,up until my tumour diagnosis, now all systems are go !
Do your doctors treat your symptoms individually or collectively: Individually
Describe your experience with doctors: Terrible until The last one. All made me feel like I was malingering and lying.
What remedies or medications have you tried: Turmeric, vitamins, aspirin, fasting, fruits,minerals and just started this week Bicarb of soda.
What makes you feel better: Fasting, except for the headaches. I can touch the floor again if I fast for a few days. Also avoiding carbohydrates such as flour and crisps etc gives me some ease of movement. slim weight. gentle excercise
What makes you feel worse: lack of rest, refined carbohydrates, coffee,cheese,SUGAR, late nights. Putting on weight. No excercise.
Have you tried avoiding fluoride in your diet: no/ starting now.
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: try to buy organic veg. I am vegetarian too.
Have you tried any thyroid specific treatments: No though I did have a test because I fely so ill, but my doctor was curt, and said I was within guidelines and basically go away. Oh and yes, to lose weight. I nearly cried. I went to him for help to lose weight, so not right the way I was treated.
Your theories or comments: It would seem That I have a long standing pituitary problem, which is probably responsible for just about everything I am suffering from. This should have been picked up years ago with the symptoms I kept presenting with. I hazard a guess therefore, that fibromyalgia is a symptom of underlying endocrine system malfunction from possibly many different causes.
Are we missing any important questions: Yes, I feel the cold terribly, snore like a trooper,most stiff on rising and after sitting, and after eating.

 

11/30/2008
First Name: devona
Age: 33
Male or Female: female
City: pickerington
State/Province: oh
Country: usa
How long have you lived there: 32years
Where were you born: columbus ohio
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: yes
What is Your Line of Work: medical field
How has Fibro affected your ability to work: still working but in alot of pain
How has Fibro affected your life: hurts to breathe on right side of back(middle), have had numerous scans and ultrasounds of gall bladder and all have came back perfect. i also have ibs and fatigue
What were your first symptoms: ruq pain, spasms while sweeping or doing dishes, ibs, forgetfullness
Your age at onset of symptoms: 28years old
How fast was your rate of decline: im not sure cause i thought it was my gallbladder and ibs
What are your current symptoms: muscle joint and stomach pains every day, fatigue, memory loss
Number of years since you developed symptoms of fibromyalgia: 5-6 years
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: this year
Describe the extent of your brain fog: all of a sudden i studder a little when saying some things, cant remember to do something ive done everyday for the last 13 years in the career im in, repeating things
Estimate number of doctors you have seen for Fibro related symptoms: 2
Do your doctors tend to focus on all your Fibro symptoms: my boss(who is a doctor) not at first because he doesnt want me to miss work and i just found a new doctor who scheduled me for an xray to determine if i have fm. also had a hita scan to rule out gall bladder disease
Do your doctors treat your symptoms individually or collectively: collectively
Describe your experience with doctors: i have the pain everyday of my life(most days worse than others) but ive been dealing with it for so long im use to it so when i go to the er when pain causes vomitting they would give me pain and nausea med s then do an ultrasound which always comes back normal-i just put it off until recently because im getting older and the pain isnt going away its getting worse
What remedies or medications have you tried: at first i would take aleve years ago. since seeing my new physician ive been prescribed zanaflex nexium and levsin
What makes you feel better: nothing-the r side is so tender it hurts to lay on my r side to sleep. i just grin and bare it
What makes you feel worse: i feel the worse when the weather changes. when i first wake up and when i take deep breaths
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride: n/a
Have you made dietary changes to avoid any other neutrotoxins: in the process. not sure of what to cut out
Have you tried any thyroid specific treatments: no
Your theories or comments: i just want to feel better and be able to function daily. its hard to stay on an exercise routine because new places start to hurt like my ribs and back. i dont like to take medication so i need to know what to do to make it go away
Are we missing any important questions: will it go away?

 

11/30/2008
First Name: Jennifer
Age: 28
Male or Female: Female
City: Pittsburgh
State/Province: PA
Country: USA
How long have you lived there: 28 years
Where were you born: Pittsburgh
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, having trouble moving around always in pain
How has Fibro affected your life: Yes, I cannot play with my children as I would like to, running around with them swimming with them, I get too tired or hurt too much
What were your first symptoms: sharp pain in the lower right quadrant (pelvic area)
Your age at onset of symptoms: 12
How fast was your rate of decline: it kept on getting worse, 16 years later, I am lucky I can get around
What are your current symptoms: pelvic pain, back pain, leg pain and weakness, pain in hands and arms, need help getting around on somedays
Number of years since you developed symptoms of fibromyalgia: I had symptoms when I was around 14 but we didnt hear about fibromyalgia until years later
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: that started around the age of 16
Describe the extent of your brain fog: cant remember what I went into the other room for, someone tells me something, I cannot remember what that was a few minutes later, having to write things down to remember
Estimate number of doctors you have seen for Fibro related symptoms: over 30
Do your doctors tend to focus on all your Fibro symptoms: No, they look at me like I am a drug addict or just dont know what to do with me
Do your doctors treat your symptoms individually or collectively: individually for years
Describe your experience with doctors: "Its all in your head" "its growing pains" "its female problems"
What remedies or medications have you tried: lyrica
What makes you feel better: If I bring my knees into my chest and lay on the couch
What makes you feel worse: the more I move around the worse the pain
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: trying to eat healthier
Have you tried any thyroid specific treatments: no
Your theories or comments: I had a total hysterectomy because they thought that was the problem, I was 25 and gave birth to one child, also my appendix was taken, they gave me meds for a diagnosis that never exsisted, always get more than one or two opinions and if it doesnt feel right to you in your heart, dont do it.
Are we missing any important questions: no

 

11/26/2008
First Name: KATHY
Age: 38
Male or Female: FEMALE
City: GIBSON
State/Province: GA
Country: US
How long have you lived there: 7 YEARS
Where were you born: AUGUSTA, GA
Is this the first time you have taken our questionnaire: YES
If not, why are you returning:
Are you still working: YES
What is Your Line of Work: INSURANCE BILLER
How has Fibro affected your ability to work: HARD TO CONCENTRATE, OUT A LOT DUE TO PAIN AND FEELING BAD
How has Fibro affected your life: MOST PEOPLE THINK I'M A HYPOCHONDRIAC, CHILD SAYS I'M SICK ALL THE TIME
What were your first symptoms: NECK AND BACK PAIN
Your age at onset of symptoms: 32
How fast was your rate of decline: I JUST REALIZED WHAT THIS WAS B/C PAIN HAS JUST THIS MONTH GOTTEN EXTREMELY WORSE AND THE BURNING SENSATION HAS STARTED TO BE WORSE IN THE LAST MONTH
What are your current symptoms: PAIN ALL OVER ESPECIALLY HANDS AND FEET,SINUS PROBLEMS,STOMACH PROBLEMS
Number of years since you developed symptoms of fibromyalgia: 6
Do your symptoms include brain fog: YES
Number of years since you developed the brain fog: 1
Describe the extent of your brain fog:
Estimate number of doctors you have seen for Fibro related symptoms: 5
Do your doctors tend to focus on all your Fibro symptoms: NO
Do your doctors treat your symptoms individually or collectively: BOTH
Describe your experience with doctors: OK, MORE RECENTLY BETTER
What remedies or medications have you tried: ALL ANTIDEPRESSANTS, ELAVIL, PAIN MEDS
What makes you feel better: REST AND SOME PAIN MEDICATIONS
What makes you feel worse: WORKING
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:

 

11/25/2008
First Name: Michelle
Age: 44
Male or Female: frmale
City: dublin
State/Province: ireland
Country: ireland
How long have you lived there: 20 years
Where were you born: sligo, Ireland
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: IT with a non-profit org.
How has Fibro affected your ability to work: yes - have not worked since May 2004
How has Fibro affected your life: have limited mobility & energy need to rely on others for assistance or to get out of the house
What were your first symptoms: pains in hands
Your age at onset of symptoms: 13
How fast was your rate of decline: over last five years approx
What are your current symptoms: utter exhaustion - trouble getting to sleeping, either sleeping thro day and night with some disturbance or no sleep at all, can go into a total dead sleep where i can not be wakened or utterly light when i hear every sound; endless travelling pain - pins and needles in arms, hands, legs and feet; muscle cramp; headaches where it feels like my skull is too small, face and scalp get so sore and sensitive, blinders around the eyes, pain in jaws - both side ; constapation; my clothes and bed clothes irritate me, are sometimes too much in that they add to the level of pain; no concentration; occassional difficulty with bladder control;
Number of years since you developed symptoms of fibromyalgia: 31
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 6
Describe the extent of your brain fog: cannot get thoughts straight, getting stuck for words, missing very obvious things, difficulty with conversations, not registering what i am hearing
Estimate number of doctors you have seen for Fibro related symptoms: 18
Do your doctors tend to focus on all your Fibro symptoms: For the most part with the exception of my GP
Do your doctors treat your symptoms individually or collectively: collectivelly
Describe your experience with doctors: In latter years they have been more helpful even though my day to day experience has not improved They have provided support,explanations, perhaps more important a diagnosis
What remedies or medications have you tried: accupuncture, various phsiotherapies, psychiatry, psychotherapy, Human Givens, a list of anti-inflaminatories painkillers &anti-anxiety over the years,currently Tylex, keral, lyrica, effexor xl, movicol,nexium,detrusitol, difene gel, adult multi-vitamins, calcium-magnesium, omega3&6,vitC
What makes you feel better:
What makes you feel worse: if i over extend myself physically. getting even more tired. 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: don't know what a neurotoxin is
Have you tried any thyroid specific treatments: no
Your theories or comments: explain neurotoxin in question
Are we missing any important questions: maybe if there were a listing of the more common symptons and then leaving some room for any additional symptons would be helpful for me

 

11/25/2008
First Name: Angela
Age: 34
Male or Female: Female
City: Ft Leonard Wood
State/Province: Missouri
Country: USA
How long have you lived there: 1 Year
Where were you born: Washington
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: homemaker and mom
How has Fibro affected your ability to work: I am a stay at home mom with 2 school age children and 2 small children. I have had days where I couldnt even get out of bed and care for the kids. I have had exhaustion and pain that keep me in bed.
How has Fibro affected your life: I am scared to over do it all the time..I feel tired and sometimes sad that I cant do what I need to do at all times.
What were your first symptoms: Extreme fatigue and muscle pain like I had the flu.
Your age at onset of symptoms: 32
How fast was your rate of decline:
What are your current symptoms: pain and stiffness in neck shoulders back knees and hips. tiredness.
Number of years since you developed symptoms of fibromyalgia: 2
Do your symptoms include brain fog: no
Number of years since you developed the brain fog:
Describe the extent of your brain fog:
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: collectively
Describe your experience with doctors: I waited a long time to see a doctor and when I did see one he said I had anxiety disorder and prescribed XANAX I was not satisfied with the diagnosis so I saw another doctor and he asked lots of questions and took blood test which indicated that I have elevated immflamatory markers. I also recently had blood test to test for RA still waiting on those results.
What remedies or medications have you tried: So far I have been using ELAVIL for the past month. 25mg twice a day but recently changed to 10 mg in the morning and 25 mg at night because of the drowsiness. I have seen significant improvement with pain.
What makes you feel better: A good nights sleep,hot showers and pain meds.
What makes you feel worse: Not sleeping well, alot of stress. To much strenuous 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:
Are we missing any important questions:

 

11/24/2008
First Name: Valerie
Age: 51
Male or Female: Female
City: Ajax
State/Province: Ontario
Country: Canada
How long have you lived there: 20 years
Where were you born: British Guyana, South America
Is this the first time you have taken our questionnaire: Yes
If not, why are you returning:
Are you still working: No
What is Your Line of Work: Secretarial
How has Fibro affected your ability to work: Often in too much pain and too tired to go to work. I am now on disability while trying out medications
How has Fibro affected your life: It has completely changed my life. I am no longer social, do not contribute to my childrens' lives as much as I used to. I am absent due to rest/sleep
What were your first symptoms: Pain at the base of my thumbs
Your age at onset of symptoms: 42
How fast was your rate of decline: Within six months had widespread pain
What are your current symptoms: Widespread pain, pulled tendons, extreme fatigue
Number of years since you developed symptoms of fibromyalgia: 9
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 2 years
Describe the extent of your brain fog: Cannot grasp things that I read and get confused when I have more than 1 thing to do
Estimate number of doctors you have seen for Fibro related symptoms: 10
Do your doctors tend to focus on all your Fibro symptoms: No, mostly just the pain and the depression
Do your doctors treat your symptoms individually or collectively: individually
Describe your experience with doctors: The ones that actually BELIEVE me want to give me pain management and anti-depressants and the ones that don't believe me actually want to do the same
What remedies or medications have you tried: aqua therapy, massage, exercise, so many different pain relief medications and anti-depressants to count
What makes you feel better: rest
What makes you feel worse: too much activity, exercise, stress, cold weather, sitting in one position for too long, like driving
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: am trying to alkalize my body
Have you tried any thyroid specific treatments: no
Your theories or comments: I want a cure for fibromyalgia, not just pain management
Are we missing any important questions: no

 

11/23/2008
First Name: Celia
Age: 34
Male or Female: Female
City: Watertown
State/Province: TN
Country: USA
How long have you lived there: 5yrs
Where were you born: Benton 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: Waitress/Cashier
How has Fibro affected your ability to work: Am no longer able to stand for long periods of time now am able to walk any kind of distance due to the pain and fatigue.
How has Fibro affected your life: Being a mother of 4 boys this has been devastating. After having my back broke for the 3rd time I was still able to make a fairly quick recovery and be bak up being a mom again. Now most days find me fighting for the energy to get up to get them ready for school and as soon as they are out the door I am back in bed because the mornings are so very tough. I have had to delegate most of the household chores to my boys and my husband has to cook supper after he gets home from work partly because I cant stand long enough and partly because I ant afford any more broken bones due to my legs giving out on me without notice. The independence I once knew and held tightly to has long disappeared. The worst thing about having fibro though is having to face doctors that dont believe that you are having these symptoms so they either accuse you of being depressed or worse yet a drug seeker.
What were your first symptoms: Looking back on it all i now realize the first symptoms was leg pain and problems.
Your age at onset of symptoms: 17
How fast was your rate of decline: Fairly slowly for the first several years. Then at age 25 after 3rd son it quickle started taking over my life and within a year I had to stop working.
What are your current symptoms: Fatigue, weakness, memory loss and pain
Number of years since you developed symptoms of fibromyalgia: 12
Do your symptoms include brain fog: YES
Number of years since you developed the brain fog: 4
Describe the extent of your brain fog: I have always prided myself on having the memory of an elephant but fibro has robbed me of that as well. I will be in the middle of a conversation and have to interrupt and ask what we are talking about again. I have to make any notes on my laptop to ensure that I will not lose them and I no longer write checks or pay bills because I tend to forget what I wrote the check for immediately after and have a hard time rememebring the bill at all since it is not staring me in the fae every day all day.
Estimate number of doctors you have seen for Fibro related symptoms: 6
Do your doctors tend to focus on all your Fibro symptoms: No
Do your doctors treat your symptoms individually or collectively: Doesnt treat at all
Describe your experience with doctors: Horrible...I now no longer trust Doctors and tend to avoid them at all cost. The stress that the so called doctors I have seen has worsened the symptoms. The doctor I am seeing now when I have to doesnt even believe in Fibro only in myalgia.
What remedies or medications have you tried: PT lortab, soma, tens unit, neurotin, darvocet, numerous antidepressants, steroids, Lyrica
What makes you feel better: Hot showers hot tubs
What makes you feel worse: cold weather, rain, 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: no
Your theories or comments: More doctors need to realize that what we are going through is not caused by depression though it can cause depression. Most others I have talked to that also suffer from fibro isnt depressed but angry instead. Angry that it is so hard to get a diagnoses angry at being looked at like they are crazy or they are making it all up for attention. Angry because when doctors do listen the only thing they do is try to mask the symptoms but are not necessarily angry for having the disease. There needs to be more education in the medical community and the general population
Are we missing any important questions:

 

11/22/2008
First Name: Kirsty
Age: 38
Male or Female: Female
City: OCEAN SPRINGS
State/Province: MS
Country: USA
How long have you lived there: 6 months
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: unit clerk at hospital
How has Fibro affected your ability to work: painful to sit for long periods. frequent headaches/fibrofog makes it difficult to concentrate at times.
How has Fibro affected your life: depression, inability to get out and have fun, fear of pain if i do too much. fear of pain if i do too little.
What were your first symptoms: generalized body pain, sensitivity to touch, abd issues
Your age at onset of symptoms: 19
How fast was your rate of decline: continuous over 20 years
What are your current symptoms: all over body pain, exhaustion, poor sleep
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: 18
Describe the extent of your brain fog: cant think of words, slurr in speaking, feel 'stupid'
Estimate number of doctors you have seen for Fibro related symptoms: too many - took long time
Do your doctors tend to focus on all your Fibro symptoms: not up until i saw a rheumatologist recently
Do your doctors treat your symptoms individually or collectively: indiv
Describe your experience with doctors: not good up until the last year. all thought i was seeking drugs or was being sensitive
What remedies or medications have you tried: nsaids, pain meds, antidepressants, muscle relaxants
What makes you feel better: not a lot
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: not really
Have you tried any thyroid specific treatments: yes, have hypothyroid - take synthroid
Your theories or comments:
Are we missing any important questions: - "Did your doctor dismiss you?"

 

11/22/2008
First Name: annette
Age: 69
Male or Female: F
City: tonto basin
State/Province: az
Country: usa
How long have you lived there: 23yrs
Where were you born: fargo,n dak
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: CNA
How has Fibro affected your ability to work: cannot carry out daily work because of increased pain and stiffness
How has Fibro affected your life: It has completely taken away my ability to complete tasks
What were your first symptoms: never sleeping well pain
Your age at onset of symptoms: 10
How fast was your rate of decline: 5 years
What are your current symptoms: constant pain,stiffness,muscle aches,hard to walk at times
Number of years since you developed symptoms of fibromyalgia: 59
Do your symptoms include brain fog: no
Number of years since you developed the brain fog:
Describe the extent of your brain fog:
Estimate number of doctors you have seen for Fibro related symptoms: 2
Do your doctors tend to focus on all your Fibro symptoms: no
Do your doctors treat your symptoms individually or collectively: collectively
Describe your experience with doctors: Doctors have very little knowledge of fibromyalgia and often give wrong information or information of little help.
What remedies or medications have you tried: asprin,codine,oxycondon
What makes you feel better: nothing
What makes you feel worse: getting cold after I take a shower makes me stiffer
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: never been recommended
Your theories or comments: Doctors need to be better educated about fibromyalgia.One does not need to be told to exercise when one can hardly walk.
Are we missing any important questions: Do patients have family support which is so important

 

11/21/2008
First Name: Kelly
Age: 34
Male or Female: female
City: Goldcoast
State/Province: Qld
Country: Australia
How long have you lived there: 15 years
Where were you born: Armidale
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: Hairdresser
How has Fibro affected your ability to work: Just cant stand on my feet all day and get extremly tired
How has Fibro affected your life: I have always been a very fit and active person, so it has really slowed me down alot,i also have 3 small children.
What were your first symptoms: shooting stabbing tingling pains in my hands and feet
Your age at onset of symptoms: 32
How fast was your rate of decline: very fast
What are your current symptoms: widespread pains in all parts of my body,crawling sensations, tingling numbing feelings, pain in my face, IBS, pain in the vulva area around menstal cycle to the point where i cant stand. I also get eye trouble, skin rashes,and have extreme sleep difficulties.
Number of years since you developed symptoms of fibromyalgia: 8 years
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 4
Describe the extent of your brain fog: Ill be driving somewhere with the kids and just totally forget where we are going, or Ill call my kids the wrong names all the time.
Estimate number of doctors you have seen for Fibro related symptoms: 4-5
Do your doctors tend to focus on all your Fibro symptoms: no not really
Do your doctors treat your symptoms individually or collectively: individually
Describe your experience with doctors: terrible, i feel like they think im a hypochondriac
What remedies or medications have you tried: magnesium,lots of different natural potions.Corvalen M.
What makes you feel better: Things seem to work for a while but then my body seems to get use to them.Corvelan m was the most successful, but i found i put weight on with it.
What makes you feel worse: stress, lack of sleep.Menstral cycle.
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 symtoms seemed to kick on after the sudden death of my Dad, it was a servere mental trauma for me, i had also lost my mum 8 years earlier.
Are we missing any important questions: no not really

 

11/19/2008

First Name: Gayle
Age: 73
Male or Female: female
City: Charlotte
State/Province: Mi, 48813
Country: usa
How long have you lived there: six years
Where were you born: 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: I use to take care of the disabled older people
How has Fibro affected your ability to work: It affects everything I try to do.I do everything I di from a chair
How has Fibro affected your life: Well i can't do anything I use to do. I never leave my house except to go to the doctors
What were your first symptoms: pain all over my body,Just about every where on me
Your age at onset of symptoms: 48 years old
How fast was your rate of decline: it was very fast.
What are your current symptoms: When I get out of bed.It is all I can do to walk out of my room,Sometime I hurt so bad I think it is going to kill me.But the doctors say it wont kill me
Number of years since you developed symptoms of fibromyalgia: Bout 25 years
Do your symptoms include brain fog: not sure what that means
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: around twenty years
Do your doctors tend to focus on all your Fibro symptoms: yes
Do your doctors treat your symptoms individually or collectively: she treats the fib.
Describe your experience with doctors: I see my doctor every three months.
What remedies or medications have you tried: I am from the south so you know I have tryed them all
What makes you feel better: Not much of anything
What makes you feel worse: rainy weather and the cold
Have you tried avoiding fluoride in your diet: I am not sure
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: like I said I have tryed it all
Have you tried any thyroid specific treatments: no
Your theories or comments: My theories is no body need to hurt this bad
Are we missing any important questions: Yes why can't they fine something to help people with Fibo.

 

11/19/2008
First Name: Ramona
Age: 36
Male or Female: Female
City: Woodland
State/Province: California
Country: USA
How long have you lived there: 18 years
Where were you born: Sarasota, Fl
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: no
What is Your Line of Work: Stay at home mom
How has Fibro affected your ability to work: sitting @ the computer for long time is extremely difficult during a flare up. Focusing on anything when the muscle knots tighten and get painful is impossible.
How has Fibro affected your life: Almost constant muscle knots in my shoulder blades and up/down sides of my neck. Most days there is some degree of pain. Muscle relaxers and pain pills make me drowsy and sometimes I am in pain, but must wait until I have picked my children up from school.
What were your first symptoms: During elementary school one year we had a fitness assesment test. I was a very active child (bike riding every day after school w/friends for hours at a time)however, on the stand still long jump I pulled almost every muscle in my back and legs. I have always had knee pains since childhood that come and go. In 1991 I started working in a grocery store as a bagger and then after 1 year a checker. The symptoms of neck pain and shoulder pain came during this time and seemed to be related to the repetative motions. I worked there for 3 years and quit b/c I was unable to perform the job anymore.
Your age at onset of symptoms: 20
How fast was your rate of decline: I was given very strong pain pills which indicated on the bottle they were addictive. The pills rendered me completely incapacitated and unable to carry on a simple conversation. I began getting frequent crippling headaches and the pain in my neck/shoulders was unbearable. I spent many nights crying on the verge of screaming from pain. I began to have pain in my whole body and sometimes would walk stiff and almost bent over in pain. I felt as though I had been thru some traumatic event, yet had no reason for the pain.
What are your current symptoms: muscle knots in shoulders/shoulder blades. "Ropey" feeling in the muscles going up the neck. These knots are always there and when they tighten up they cause pain. I do not sleep well. I snore very loud, I experience depression/fatigue/irritability and sometimes mood swings.
Number of years since you developed symptoms of fibromyalgia: approx 15 years
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: unsure
Describe the extent of your brain fog: difficulty concentrating at times. sometimes forget common vocab words. I can be in the middle of a conversation and just "brain fart" on what I'm trying to say. If it is a difficult task ex:math work can be almost tourturous to force myself to stay seated and focus on finishing. doing a survey like this is very difficult b/c of the time it requires to stay seated still and focused.
Estimate number of doctors you have seen for Fibro related symptoms: 6
Do your doctors tend to focus on all your Fibro symptoms: no
Do your doctors treat your symptoms individually or collectively: yes
Describe your experience with doctors: first several doctors said there was nothing wrong w/me. finally I filed a worker's comp case due to inability to continue working that dr said there was no physical sign of anything wrong w/me. I went to an osteopath in an attempt to find a dr w/a wider range of training. She ordered blood work on me to check for thyroid/lupus. The blood work came back as normal. After several weeks she told me she didn't know what was wrong w/me or how to help me, but that she had to issue me back to work b/c she didn't want to risk an investiagtion for having me out on disability w/no proof. She told me that she felt certain even though the test results were normal I would someday find out that I had Lupus and that I would have to learn to live w/the pain.
What remedies or medications have you tried: pain pills. massage. accupuncture.cupping. reki. bowen. herbal supplements. chiropractic work. Physical therapy w/traction.
What makes you feel better: immediate relief obtained from massage or cupping IF it gets the knot to realease. Does not always work and only lasts a few days.
What makes you feel worse: unsure
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride: n/a
Have you made dietary changes to avoid any other neutrotoxins: no
Have you tried any thyroid specific treatments: no
Your theories or comments:
Are we missing any important questions:

 

11/18/2008
First Name: marjorie
Age: 48
Male or Female: female
City: oxford
State/Province: pa
Country: usa
How long have you lived there: 11yrs
Where were you born: baltimore,md
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: yes
What is Your Line of Work: RN
How has Fibro affected your ability to work: yes out of work 1st 3 yrs with illness 89-1991.
How has Fibro affected your life: Yes, I say no to everything but work and the necessary aspects of life to conserve energy.
What were your first symptoms: Flu like - vomiting, stiff neck, fatique
Your age at onset of symptoms: 29
How fast was your rate of decline: Out of work immediately for 3 yrs
What are your current symptoms: I'm on a tricyclic to help control muscle pain and insomnia which really works for me but if I miss my med immediatley sharp diffuse muscle pain that can occur anywhere and debilitating fatique with cloudiness
Number of years since you developed symptoms of fibromyalgia: 18yrs
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 18
Describe the extent of your brain fog: Very rare but have been driving and do not know why I am on the road or where I am or where I am going last a few seconds but is scary
Estimate number of doctors you have seen for Fibro related symptoms: none recently but early years 12
Do your doctors tend to focus on all your Fibro symptoms: no
Do your doctors treat your symptoms individually or collectively: collectively
Describe your experience with doctors: Early years I felt like a number, and like a hypochondriac even though I had no hx of being sick and I was a "tom boy sort" worked outside inside did everything most girls dont do
What remedies or medications have you tried: 3 months of ritalin very helpful but I could not afford to lose weight. I did the guaifenesin protocal which is just too involved even for a nurse.Elavil too sedating, antibiotic doxycillin for lymes (did not have). Juiced, vitamins. I have been tx with RX nortriptylene for last 13 yrs which was the magic med for me,I now work 4 days a week but dont let my medication run out or skip a dose. I do not usually like to talk about this illness and focus on everything I now can do. On nortriptylene I can forget about this illness it does help a lot.
What makes you feel better: REST, low stress and Dr Schulze organic superfood. I rarely catch colds like my RN co-workers, I never get anything.
What makes you feel worse: Lost of sleep, lymph nodes will swell, muscles will ache. Stress increases my fatique level
Have you tried avoiding fluoride in your diet: NO
If so, which sources of fluoride: Possible cipro in the past. Always been on well water. Exposed to garden pesticides
Have you made dietary changes to avoid any other neutrotoxins: Try to eat mostly whole foods not processed. Never aspartane,sacchrarin. Do not drink sodas.
Have you tried any thyroid specific treatments: No, my sister has she also has fibromyalgia
Your theories or comments: I was 29 yrs old and seemed to develop a series of opportunistic infections at the time I first had sx including +EBV,Pinworms, Giardia Lambia. Tested for HIV-. Went through hell the first 3 yrs of this illness.
Are we missing any important questions:

 

11/17/2008
First Name: diane
Age: 49
Male or Female: female
City: n.tonawanda
State/Province: ny
Country: usa
How long have you lived there: 18 years and now again for the last 2
Where were you born: Buffalo NY
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: child care
How has Fibro affected your ability to work: I'm unable to commit to a job due to my fibro
How has Fibro affected your life: too much to write
What were your first symptoms: my legs felt like I over exercised, they hurt like a ran a marathon
Your age at onset of symptoms: 48
How fast was your rate of decline: 3 months
What are your current symptoms: flu like symptoms
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: confusion, day dreaming, forgetfulness
Estimate number of doctors you have seen for Fibro related symptoms: 5
Do your doctors tend to focus on all your Fibro symptoms: only one doctor does
Do your doctors treat your symptoms individually or collectively: collectively
Describe your experience with doctors: make me feel like I'm stupid
What remedies or medications have you tried: lyrica, lortab nurontin
What makes you feel better: nothing really lortab helps the most
What makes you feel worse: i 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:
Are we missing any important questions:

 

11/16/2008
First Name: eve
Age: 48
Male or Female: female
City: miami
State/Province: fl
Country: usa
How long have you lived there: 18 years
Where were you born: usa
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: yes
What is Your Line of Work: administrative assistant / office manager
How has Fibro affected your ability to work: I've become slower in movement, have disrupted concentration and lack of focus
How has Fibro affected your life: I cannot get things done at home as I used to - I've become irritible due to lack of sleep.
What were your first symptoms: joint stiffness
Your age at onset of symptoms: 45
How fast was your rate of decline: 3 years
What are your current symptoms: fatigue, joint stiffness, pain, inflamation, confusion, lack of focus and concentration, tingling on my fingers every morning, stomach problems, feeling down.
Number of years since you developed symptoms of fibromyalgia: 3 years progression
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 6
Describe the extent of your brain fog: forgetting many things, short term memory loss, then, long them as well. Confustion & studdering. Lack of concentration & focus.
Estimate number of doctors you have seen for Fibro related symptoms: 3
Do your doctors tend to focus on all your Fibro symptoms: yes, my reumatologist.
Do your doctors treat your symptoms individually or collectively: yes, the reumatologist prescribed Lyrica - today is the 2nd day taking this medication.
Describe your experience with doctors: very good
What remedies or medications have you tried: Advil - now, Lyrica
What makes you feel better: nothing so far
What makes you feel worse: 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: no
Your theories or comments: Maybe it can be releived with better oxygenation & relaxation - I have a bad habit of not breathing well enough and I hear that meditation works wonders.
Are we missing any important questions: none that I can tell. maybe, if one has had recent injuries or traumas and what are the foods most consumed. (?) don't know...

 

11/14/2008
First Name: Linda
Age: 62
Male or Female: Female
City: Republic
State/Province: MO
Country: usa
How long have you lived there: 32 yrs
Where were you born: Miami OK
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: yes
What is Your Line of Work: Tax preparer
How has Fibro affected your ability to work: Makes me really tired and sometimes unable to think good.
How has Fibro affected your life: Slows down my life style and makes me very irritable at times
What were your first symptoms: Chest pain
Your age at onset of symptoms: 38
How fast was your rate of decline: slowly
What are your current symptoms: itching, aching, back pain
Number of years since you developed symptoms of fibromyalgia: 24
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 15
Describe the extent of your brain fog: slows down my thinking until I just totally relax and recouop
Estimate number of doctors you have seen for Fibro related symptoms: 2
Do your doctors tend to focus on all your Fibro symptoms: sometimes
Do your doctors treat your symptoms individually or collectively: collectively
Describe your experience with doctors: fine
What remedies or medications have you tried: advil, pain medicine, exercise
What makes you feel better: all 3
What makes you feel worse: 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: yes
Your theories or comments:
Are we missing any important questions: no

 

11/13/2008
First Name: Louise
Age: 62
Male or Female: female
City: burlington
State/Province: ont
Country: canada
How long have you lived there: 3yrs
Where were you born: quebec
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: no
What is Your Line of Work:
How has Fibro affected your ability to work:
How has Fibro affected your life: went from having above average energy to none
What were your first symptoms: migraines and stiff neck
Your age at onset of symptoms: 48
How fast was your rate of decline: within six months, although looking back I always had stomach problems and allergies
What are your current symptoms: rigid muscles all over, can hardly walk due to pain in lower back and thighs and groin, sore upper back and tight chest muscles, stiff neck , pain in face, dry sinuses , reflux no meds have helped, gas
Number of years since you developed symptoms of fibromyalgia: 12 years
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: since beginning of fibro
Describe the extent of your brain fog: forget what words to use, can't remember where I put anything
Estimate number of doctors you have seen for Fibro related symptoms: twenty or so, moved a lot over the years
Do your doctors tend to focus on all your Fibro symptoms: they are useless
Do your doctors treat your symptoms individually or collectively: individually
Describe your experience with doctors: they don't know the cause , nor do they know how to fix it so they chose to make light of it or blame it on depression
What remedies or medications have you tried: prozac, wellbutrin paxil, pine bark,none helped, side effects were worst than the original problem, ativan helps but I am afraid of addiction so I take 0.5 a dayfor a few weeks and then go a month without it until I can't stand the pain anymore , have also tried food elimination, went without grains for two months, it helped the gas and stomach swelling but did nothing for the pain
What makes you feel better: I can never tell, this disease has no pattern, if I have less stress and don't do much I have less pain but right now being idle is not helping
What makes you feel worse: stress, dampness, mold, msg in food, too much of anything, too many emotions , cleaning, shopping
Have you tried avoiding fluoride in your diet: just lately,
If so, which sources of fluoride: drugs, water, toothpaste
Have you made dietary changes to avoid any other neutrotoxins: never eat convenience food, stay away from sugar, diet pop, junk food, alcohol
Have you tried any thyroid specific treatments: been on the same dose of synthroid for thirty years, tsh number is 0.1
Your theories or comments: I get bad flares even when I think I do everything right, however eating certain things does make it worst, mostly I think it is due to chronic stress, I lived a long period where everything in my life went out of control and it seemed I never bounced back, unrelenting every day stress that last for years has to do something to your nervous system, I have been in the worst flare since my dad passed away last week, also having little control over how you would like things to be, having to adapt to other people's views and lifestyle in order to survive , men have more control which I believe is the reason they do not get fibro as much as women do, also men do not suffer sexual abuse the way women do, nor emotional abuse. There are so many theories out there, and I have had most of them at the time when this started, from a car accident, death of my mother, surgery, flu shot when I was already suffering from the flu, tons of stress, divorce, financial problems, menopause, carbon monoxide from a blocked chimney, drinking diet pop , getting run down all within a year, so what's to say brought it on, probably a combination of all , stress being the worst offender, I think that most of us are worned out physically and emotionaaly
Are we missing any important questions: , how much stress did you have when this happened? we all know having fibro perpetuates it, also how many suffered abuse of any kind? how responsible do you feel for other people's happiness, have you always put other people's needs before your own , did you always push yourself to do it all and be all for other people, I must add that there were no floride in the water where I lived before, my symptoms were not as bad

 

11/12/2008
First Name: Mary
Age: 50
Male or Female: female
City: Wooster
State/Province: Ohio
Country: USA
How long have you lived there: 46 years
Where were you born: Orrville, OH
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: yes
What is Your Line of Work: school bus aide/substitute bus driver
How has Fibro affected your ability to work: I had become increasingly difficult to do my job, as I'm in much pain. I have also been diagnosed with IBS, and miss work frequently when it flairs up.
How has Fibro affected your life: I am tired constantly, which results in being less active. The chronic pain increases depression. I'm just not a very happy person anymore.
What were your first symptoms: Foot pain, especially in my heels, along with stiffness in most joints. With family history of rheumatoid arthritis, I was concerned enough to visit a rheumatologist.
Your age at onset of symptoms: 32
How fast was your rate of decline: Symptoms have not subsided and have gotten progressively worse during the past 18 years. IBS, irritable bladder, etc. were diagnosed in the past 8 years.
What are your current symptoms: Severe leg and hip pain, IBS (diahheria), chronic fatigue, irritable bladder, painful menstrual cycles, frequent headaches, near constant back pain especially in neck/shoulder area and lumbar spine. Trouble sleeping and numbness in all limbs, as well as mid-back.
Number of years since you developed symptoms of fibromyalgia: 18
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: not sure
Describe the extent of your brain fog: inability to concentrate, forgetfulness, mood swings
Estimate number of doctors you have seen for Fibro related symptoms: 6
Do your doctors tend to focus on all your Fibro symptoms: no...they focus on depression and claim to treat the fibro with antidepressant therapy, which only helps a little.
Do your doctors treat your symptoms individually or collectively: doctors seem to ignore most of the symptoms and focus on the depression aspect.
Describe your experience with doctors: I believe that most of them do not believe that my pain is real. They believe that the fibro symptoms are caused by depression, when I believe the depression is partially caused by the chronic symptoms of the fibro.
What remedies or medications have you tried: flexeril, wellbutrin, prozac, elavil, paxil, celexa, darvocet, ibuprofen, aspirin, vicodin, to name a few.
What makes you feel better: darvocet or vicodin, when the pain is unbearable (30 tabs in 6 months)
What makes you feel worse: sleeping too long - staying in one position too long - strenuous exercise - cold weather or air conditioning - menstrual cycle
Have you tried avoiding fluoride in your diet: not yet
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, my thyroid tests came back okay
Your theories or comments: There are numerous serious autoimmune disorders within my family, ie: chrohns, ankylosing spondylitis, rheumatoid arthritis, guillone barre syndrome, graves disease, diverticulitis, menieres disease. I believe that there is an autoimmune link to the fibromyalgia, as well.
Are we missing any important questions: I would be interested to know if other fibro patients have autoimmune links in their family history, too.

 

11/12/2008
First Name: mary
Age: 38
Male or Female: female
City: watsonville
State/Province: calif
Country: usa
How long have you lived there: 38 years
Where were you born: watsonville
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: managment
How has Fibro affected your ability to work: yes
How has Fibro affected your life: yes
What were your first symptoms: aches all over, could not function as I used to.
Your age at onset of symptoms: 35
How fast was your rate of decline: almost overnight. I just keep getting worse
What are your current symptoms: aches all over,difficult to work,drive,sleep
Number of years since you developed symptoms of fibromyalgia: 3 years
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 3years or more
Describe the extent of your brain fog: fells like a veil is over my face
Estimate number of doctors you have seen for Fibro related symptoms: 4 at least
Do your doctors tend to focus on all your Fibro symptoms: seems they don't know what to do to make the pain go away
Do your doctors treat your symptoms individually or collectively: I take Liraca, alleve pain pathches. Strees is a big factor
Describe your experience with doctors: Arthritis Doctor spends little time with me. Sends me for body scans and to a pain managment Dr. He even prescribed Morfin. No change. Gen. DR. gave me Liraca. Takes pain away somewhat. Still so tired and joints in feet and hands ache still
What remedies or medications have you tried: Liraca, Paxil, vicodin, heat compresses, sleeping pills, over couter pills for aches
What makes you feel better: I am without a diffenent answer
What makes you feel worse: Stress, sit to long, mornings, try to 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 red meat, no coffee
Have you tried any thyroid specific treatments: no they say my throid is fine, but my mother is border line low and she takes meds every day
Your theories or comments: Iam sick of being tired. I want very much to find a cure.
Are we missing any important questions: no

 

11/12/2008
First Name: jean
Age: 70
Male or Female: F
City: louisville
State/Province: ky
Country: usa
How long have you lived there: all my life
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: no
What is Your Line of Work: teacher
How has Fibro affected your ability to work: yes
How has Fibro affected your life: yes
What were your first symptoms: pain--unknown source
Your age at onset of symptoms: ???
How fast was your rate of decline: no sure
What are your current symptoms: pain, fog,tiredness
Number of years since you developed symptoms of fibromyalgia: know of 20
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 7-8
Describe the extent of your brain fog: just some memory glitches
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: indivually
Describe your experience with doctors: some understand, others are learning
What remedies or medications have you tried: moist heat..allergic to many meds
What makes you feel better: rest
What makes you feel worse: beinging stresses out/change in temperatures
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:
Are we missing any important questions:

 

11/11/2008
First Name: ANITA
Age: 39
Male or Female: FEMALE
City: LINCOLNSHIRE
State/Province: LINCOLNSHIRE
Country: UK
How long have you lived there: 15 YEARS
Where were you born: UK
Is this the first time you have taken our questionnaire: YES
If not, why are you returning:
Are you still working: YES
What is Your Line of Work: HOSPITAL WORKER
How has Fibro affected your ability to work: I HAVEN'T GOT AS MUCH ENERGY OR ENTHUSIASM TO CARRY OUT MY JOB. SOME DAYS I FEEL AS THOUGH I AM NOT GOING TO GET THROUGH THE DAY AS I AM SO TIRED AND MY LEGA AND ARMS FEEL SO HEAVY
How has Fibro affected your life: IT HAS MADE ME IRRITABLE AND SHORT TEMPERED. IT KEEPS ME AWAKE AT NIGHT. IT HAS CAUSED ME TO FEEL VERY DEPRESSED AND UNENTHUSIASTIC. I DONT ENJOY TIME WITH MY CHILDREN AS MUCH AS I SHOULD BECAUSE I HAVEN'T GOT THE ENERGY TO DO FUN THINGS.
What were your first symptoms: EXHAUSTION, TINGLING IN LEGS AND ARMS.
Your age at onset of symptoms: 37
How fast was your rate of decline: VERY RAPID
What are your current symptoms: EXHAUSTION, IRRITABILITY, DEPRESSION, TINGLING IN LIMBS.
Number of years since you developed symptoms of fibromyalgia: 1.5 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:
Estimate number of doctors you have seen for Fibro related symptoms: 1
Do your doctors tend to focus on all your Fibro symptoms: I HAVE ONLY RECENTLY BEEN DIAGNOSED AND AM DUE TO SEE THE CONSULTANT AGAIN IN A COUPLE OF MONTHS
Do your doctors treat your symptoms individually or collectively: THE DR HAS TOLD ME TO FOCUS ON GETTING BETTER QUALITY SLEEP - DRINK MILK BEFORE BEDTIME, HAVE A HOT BATH BEFORE BED ETC AND SEE IF SYMPTOMS GET BETTER.
Describe your experience with doctors: GENERAL PRACTITIONERS NO GOOD AT ALL! TREAT YOU LIKE A TIME WASTER. THE CONSULTANT I SAW WAS GOOD - ENTHUSIASTIC AND GOOD AT EXPLAINING.
What remedies or medications have you tried: I HAVE TRIED NATURAL REMEDIES AND SOME HERBAL REMEDIES YOU CAN GET FROM HEALTH SHOPS.THE REMEDIES HAVE FOCUSSED ON GETTING METO SLEEP BETTER BUT HAVENT REALLY WORKED SO FAR.
What makes you feel better: GOOD QUALITY SLEEP WHEN I CAN GET IT. ALSO, NO STRESS.
What makes you feel worse: STRESS, TIREDNESS,
Have you tried avoiding fluoride in your diet: NO
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: TRY TO EAT AS MUCH ORGANIC FOOD AS POSSIBLE
Have you tried any thyroid specific treatments: NO
Your theories or comments: NOT SURE. SLEEP DEFINITELY PLAYS A BIG ROLE IN HOW YOU FEEL - THE MORE TIRED YOU ARE THE WORSE YOU FEEL.
Are we missing any important questions:

 

11/11/2008
First Name: Julie
Age: 43
Male or Female: Female
City: Jackson Heights
State/Province: NY
Country: USA
How long have you lived there: 2 years
Where were you born: Boston, MA
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: yes
What is Your Line of Work: Unit Coordinator, disease surveillance, health data, computer work
How has Fibro affected your ability to work: it is difficult to work at the computer so much
How has Fibro affected your life: yes, I am in pain a lot and affects my ability to enjoy my social life
What were your first symptoms: hip and back pain
Your age at onset of symptoms: 18
How fast was your rate of decline: progressively feeling worse over past 25 years
What are your current symptoms: muscular/skeletal pain in neck, shoulders, upper and lower back, hips legs, feet
Number of years since you developed symptoms of fibromyalgia: 25 years
Do your symptoms include brain fog: no
Number of years since you developed the brain fog:
Describe the extent of your brain fog:
Estimate number of doctors you have seen for Fibro related symptoms: 3
Do your doctors tend to focus on all your Fibro symptoms: yes
Do your doctors treat your symptoms individually or collectively: collectively
Describe your experience with doctors: have been prescribed anti-depressant elavil
What remedies or medications have you tried: 5 HTP
What makes you feel better: exercise, sleep
What makes you feel worse: coffee, stress, lack of sleep and exercise
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: no
Have you tried any thyroid specific treatments:
Your theories or comments: I was diagnosed with Fibromyalgia, but I still do not know if I truly have it. But, I am thinking that calcium absorption may be key.
Are we missing any important questions:

 

11/09/2008
First Name: David
Age: 60
Male or Female: m
City: Honolulu
State/Province: Hawaii
Country: USA
How long have you lived there: 60
Where were you born: Honolulu
Is this the first time you have taken our questionnaire: no
If not, why are you returning: something went wrong with the first questionaire and I am told to take it again.
Are you still working: yes
What is Your Line of Work: outside sales
How has Fibro affected your ability to work: It is hard for me to walk for any length of time and distance. Not being able to stand is very difficult for my job.
How has Fibro affected your life: I have pain in my legs constantly. also in my back and shoulders and hands.
What were your first symptoms: Pain in my calves was first. Then my joints.
Your age at onset of symptoms: 48
How fast was your rate of decline: This year has been the worst it has ever been. It seems that since the summer my ability to walk and stand has been compromised a great deal.
What are your current symptoms: I have pain in my calves, thighs, hips, lower back pain, shoulder pain and pain in my hands and all joints.
Number of years since you developed symptoms of fibromyalgia: 12 years
Do your symptoms include brain fog: Yes
Number of years since you developed the brain fog: 4 years
Describe the extent of your brain fog: I would forget things and where I laid things down.
Estimate number of doctors you have seen for Fibro related symptoms: In the last 12 years I would say I saw at least 8 doctors.
Do your doctors tend to focus on all your Fibro symptoms: They all pointed to arthritis symtoms. virus colds and pain
Do your doctors treat your symptoms individually or collectively: I was just diagnosed and will be receiving medicine from their rhumatologist.
Describe your experience with doctors: Through all of my pain, they never thought about fibromyalgia at all.
What remedies or medications have you tried: guaifenesin, diet, ibupofen 800 taking melatonin 5htp
What makes you feel better: nothing yet.
What makes you feel worse: eating beef and related foods
Have you tried avoiding fluoride in your diet: yes
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: I do not eat red meat. I do not eat eggplant and green peppers. Low fat diet.
Have you tried any thyroid specific treatments: Not at this time
Your theories or comments: I hope I can get something so I can function.
Are we missing any important questions: No

 

11/08/2008
First Name: rebecca
Age: 34
Male or Female: female
City: harrison
State/Province: maine
Country: usa
How long have you lived there: 4 months
Where were you born: MA
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: destroyed it
How has Fibro affected your life: I've learned how to work around it - to be the best wife and mother I can be despite all the "down time".
What were your first symptoms: overall pain and fatigue
Your age at onset of symptoms: 28
How fast was your rate of decline: fairly gradual
What are your current symptoms: overall pain, chronic fatigue, high sensitivity to pain, light, sound and smell, sensitivity to lots of different foods, loss of depth perception, brain fog, unrestorative sleep, weight gain, anxiety attacks (hyperventilating), convulsive seizure-like episodes from anxiety, unable to exert myself much.
Number of years since you developed symptoms of fibromyalgia: 6
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 3
Describe the extent of your brain fog: It seems like my IQ has decreased. I have a bachelor of science and I used to be a trigonometry tutor and now I can't remember what 6 X 6 equals.
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: I don't bother with them much. I generally do my own research and then ask for prescriptions.
What remedies or medications have you tried: vitamins, ribose, ambien, ginger, magnesium, prayer
What makes you feel better: laying on my couch doing nothing for as long as possible
What makes you feel worse: stressing about everything I'd rather be doing than laying on the couch, over-doing it with exercise
Have you tried avoiding fluoride in your diet: yes
If so, which sources of fluoride: toothpaste
Have you made dietary changes to avoid any other neutrotoxins: yes
Have you tried any thyroid specific treatments: no
Your theories or comments: I had a hard life before this all started. It almost seems like my body just got overly worn down and now, even though things are great and calm and I've made some wonderful, major changes for the better, it doesn't remember how to be normal.
Are we missing any important questions: none I can think of

 

11/07/2008
First Name: Tiona
Age: 36
Male or Female: Female
City: Phoenix
State/Province: AZ
Country: USA
How long have you lived there: 3 yrs
Where were you born: California
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: Yes
What is Your Line of Work: Customer Service
How has Fibro affected your ability to work: I am currently working on getting disability approved due to the uncontrolable pain which is increased with work activities.
How has Fibro affected your life: My whole life has changed. I am no longer me. I have a hard time doing everything. I am always conserned about pain.
What were your first symptoms: Body aches all over. Flu like symptoms and fatique.
Your age at onset of symptoms: 36
How fast was your rate of decline: Approx 4 months.
What are your current symptoms: Pain all over. Back,neck,legs,arms hands etc.
Number of years since you developed symptoms of fibromyalgia: 1
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 1
Describe the extent of your brain fog: It comes and goes. Sometimes I have a hard time remembering the simplest of things.
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. They usually want to know what is bothering you the most.
Do your doctors treat your symptoms individually or collectively: individually
Describe your experience with doctors: I dont think that doctors fully understand how to treat the whole fibromyalgia patient.
What remedies or medications have you tried: chiropractic, massage, herbal clenses, vitamins and min. anti depressants, nsaids, heat and ice packs, exercise, rest, muscle relaxers, opoids, lyrica, nurontin, etc
What makes you feel better: The meds work sometimes, but it seems like you have to keep increasing them and I dont like doing that. Massage helps as well but have to be careful not to invasive.
What makes you feel worse: Too much activity or exercise. Not enough sleep. Side effects of medications.
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 get my life back. I am tired of this illness.
Are we missing any important questions: No

 

11/06/2008
First Name: Rachel
Age: 54
Male or Female: Female
City: Stevensville
State/Province: MT
Country: USA
How long have you lived there: 30 years
Where were you born: Rapid City SD
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/clerical
How has Fibro affected your ability to work: extremely uncomfortable
How has Fibro affected your life: lots-have some days I am too tired to function and lay on couch all day. Too much pain to play with the grandkids and enjoy working in the yard, etc.
What were your first symptoms: 5-6 years ago
Your age at onset of symptoms: 48
How fast was your rate of decline: rapid and getting faster
What are your current symptoms: pain all over, especially shoulders and back, itching, itching, itching, extreme fatigue, depression, weight gain
Number of years since you developed symptoms of fibromyalgia: 6
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 5-6
Describe the extent of your brain fog: sometimes not at all, sometimes it is scary, if I am driving or something like that
Estimate number of doctors you have seen for Fibro related symptoms: 14
Do your doctors tend to focus on all your Fibro symptoms: only lately, i had one doctor tell me all she had to offer me was mental health. nice, huh?
Do your doctors treat your symptoms individually or collectively: individually--lots of pills. I hate it
Describe your experience with doctors: frustrating, very frustrating. I have lost faith in the medical field.
What remedies or medications have you tried: lithium, high blood pressure medicine, paroxatine, neproxitine, very little cymbalta, thyroid pills
What makes you feel better: massage
What makes you feel worse: depends on the day. i have good days and bad days
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 thyroid medicine
Your theories or comments:
Are we missing any important questions:

 

11/04/2008
First Name: Lori
Age: 43
Male or Female: female
City: Peoria
State/Province: Illinois
Country: usa
How long have you lived there: 43
Where were you born: yes
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: n/a
What is Your Line of Work: Homemaker
How has Fibro affected your ability to work: It is a struggle to do anything, but I keep myself busy, or I can't function at all sometimes
How has Fibro affected your life: It has really taken a toll on me, mentally, physically, emotionally, I'm depressed all the time, and most of the time I csn't even stand anyone to even touch my skin, I hurt all over
What were your first symptoms: Pain, tiredness, unable to do some things because of pain
Your age at onset of symptoms: About 30
How fast was your rate of decline: really fast the past three years
What are your current symptoms: severe pain all over my body, fatique, thyroid disease, memory loss,migraine headache from the stress of being in pain.Hot and Cold episodes, Pain, Pain and more pain.Insomnia
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: 3
Describe the extent of your brain fog: I have difficuly remembering something like this morning, find myself forgetting appointments all the time, driving and going the opposite way and not remembering where I'm suppose to be going. Drawing total blanks on alot of things
Estimate number of doctors you have seen for Fibro related symptoms: 5
Do your doctors tend to focus on all your Fibro symptoms: no
Do your doctors treat your symptoms individually or collectively: no
Describe your experience with doctors: In the past very bad, but recently, I have a new doctor who cares and is helping me
What remedies or medications have you tried: levatroxen for my thyroid, painkillers and muscle relaxers
What makes you feel better: Nothing really, I just deal with it.
What makes you feel worse: cold weather, stress, activities, such as mowing the yard clening, etc. 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: no
Have you tried any thyroid specific treatments: Levatroxin
Your theories or comments: I feel that people who have these symptoms should be taken seriously because I for one find it very difficult to function on a daily basis.
Are we missing any important questions: None that i can think of

 

11/04/2008
First Name: cindy
Age: 51
Male or Female: female
City: winston-salem
State/Province: nc
Country: usa
How long have you lived there: 51 years
Where were you born: same
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: historical interpretation
How has Fibro affected your ability to work: I still work but am unable to do anything else.
How has Fibro affected your life: I have no life except taking care of myself enough to continue earning a living
What were your first symptoms: stiffness
Your age at onset of symptoms: 45
How fast was your rate of decline: very fast
What are your current symptoms: fatigue, over all pain/inflamation, brain fog, insomina
Number of years since you developed symptoms of fibromyalgia: six
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: four
Describe the extent of your brain fog: I can no longer do things the way I always have because I can't remember some of the most simple things. I might forget to do something or not be able to think of a work.
Estimate number of doctors you have seen for Fibro related symptoms: two
Do your doctors tend to focus on all your Fibro symptoms: yes
Do your doctors treat your symptoms individually or collectively: both
Describe your experience with doctors: I have had a very understanding rheumatologist. He is retiring this month and I don't know what I will do.
What remedies or medications have you tried: Prescription drugs, otc, folk remedies, anything I learn that sounds reasonable
What makes you feel better: If I can get good sleep that helps. Exercise, but not too much.
What makes you feel worse: sleepless nights, stress, cold, rainy weather
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: not really
Have you tried any thyroid specific treatments: no
Your theories or comments: I will try avoiding fluoride. Eliminating inflammatory foods didn't make a difference to me but eliminating corn and corn products does seem to make a difference to me. I will try acv
Are we missing any important questions:

 

11/03/2008
First Name: darryl
Age: 44
Male or Female: female
City: bridgewater
State/Province: nova scotia
Country: canada
How long have you lived there: 9 years
Where were you born: south africa
Is this the first time you have taken our questionnaire: yes
If not, why are you returning: na
Are you still working: yes
What is Your Line of Work: title searching
How has Fibro affected your ability to work: not
How has Fibro affected your life: challenging to excersize and stay fit and active and painfree
What were your first symptoms: burning in arms and legs when working out very sensitive in arms
Your age at onset of symptoms: 36
How fast was your rate of decline: seemed fairly quick to me
What are your current symptoms: burning in arms when working out cramping joint pains exspecially in morning very sensitive in arms thyroid is underactive fatigue
Number of years since you developed symptoms of fibromyalgia: 8 yrs
Do your symptoms include brain fog:
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: not at all
Describe your experience with doctors: not actively treating symptoms or addressing issues
What remedies or medications have you tried: excersice and pain killers
What makes you feel better: excersise
What makes you feel worse: cold weather
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: no
Have you tried any thyroid specific treatments: yes i am currently on synthroid
Your theories or comments: i never knew that brain fog or thyroid problems were linked to fibromyalgia until right now which really frustrates me bc even getting the doctors to recognise and treat the thyroid took over four years as for the brain fog i am not really sure what you mean by that and i definitly have a problem focusing and "staying present" but had read that was common with thyroid problems
Are we missing any important questions:

 

11/02/2008
First Name: Theresa
Age: 45
Male or Female: female
City: gOBLER
State/Province: Mo.
Country: US
How long have you lived there: 14 yrs
Where were you born: ark.
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: In every way. Emotional, Financial, spiritual, mental, it's taken my life away completely
What were your first symptoms: muscle aches in my calves
Your age at onset of symptoms: 38
How fast was your rate of decline: disabled at the age of 39
What are your current symptoms: pain throughout my body, insomnia, nausea, weakness, tiredness, short of breath, poor memory,
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: 7
Describe the extent of your brain fog: at times i cant recall my grand children's names & birthdays & they are here daily
Estimate number of doctors you have seen for Fibro related symptoms: 4
Do your doctors tend to focus on all your Fibro symptoms: no
Do your doctors treat your symptoms individually or collectively: individually
Describe your experience with doctors: i feel they look at me like i am a drug head or drug dealer, i feel like i am a dollar in thier pocket, rather than a person crying out for help
What remedies or medications have you tried: i've tried so many i cant remember, i'd have to get that info from my med chart
What makes you feel better: my pain meds
What makes you feel worse: wet weather, cold front, or stress
Have you tried avoiding fluoride in your diet: yes, after reading bout it on the net
If so, which sources of fluoride: tooth paste, tap water
Have you made dietary changes to avoid any other neutrotoxins: yes, i no longer microwave foods in plastic containers, & the only meat i eat is chicken or venison
Have you tried any thyroid specific treatments: no
Your theories or comments: i am now reading about & trying the apple cider vinegar & baking soda remedy i read about on EARTH CLINIC
Are we missing any important questions: Yes, has your pain driven you to attempt to hurt yourself-- i tried to commit suicide in march of this year.

 

 

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