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Fibromyalgia Questionnaire & Results

Latest Update: 11/19/2009 

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39 QUESTIONNAIRE COMPLETED DATA FORMS FOR September 2008

09/30/2008
First Name: Melinda
Age: 37
Male or Female: female
City: Hervey Bay
State/Province: Australia
Country: Australia
How long have you lived there: 3 months
Where were you born: sydney
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: I feel as though it has reduced my enjoyment with my family. I have to plan things around how I'm feeling.
What were your first symptoms: back & neck pain
Your age at onset of symptoms: 27
How fast was your rate of decline:
What are your current symptoms: back & neck pain, headache,intolerance to noise,
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: ?
Describe the extent of your brain fog: forgeting words, not as able to absorb information
Estimate number of doctors you have seen for Fibro related symptoms: 5
Do your doctors tend to focus on all your Fibro symptoms: I have only been diagnosed in the last couple of weeks. All symptoms were dealt with individially
Do your doctors treat your symptoms individually or collectively: prior individually now collectively
Describe your experience with doctors: not enough time in a consult to piece together symptoms.
What remedies or medications have you tried: mysindol, acupunture, physio, chiro, oesteo, yoga, pilates, magnesium, endol 10 (now) massage,
What makes you feel better: yoga, pilates, massage only for a short time.
What makes you feel worse: All treatments have reduced pain for a short 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
Have you tried any thyroid specific treatments: no
Your theories or comments:
Are we missing any important questions:

 

09/30/2008
First Name: diane
Age: 50
Male or Female: female
City: houston
State/Province: usa
Country: usa
How long have you lived there: 33 years
Where were you born: olney ill
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: yes yes yes
How has Fibro affected your life: yes yes yes
What were your first symptoms: back and general feeling of exhaustion
Your age at onset of symptoms: 43
How fast was your rate of decline: fast
What are your current symptoms: pain in back buttocks legs knees arms hands hard to hold things,i drop everything fatique, i walk like frankinstien, very stiffly
Number of years since you developed symptoms of fibromyalgia: 7 years
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 5
Describe the extent of your brain fog: i forget easily, and sometimes i really have to concentrate just to listen to conversations
Estimate number of doctors you have seen for Fibro related symptoms: 4
Do your doctors tend to focus on all your Fibro symptoms: no i feel dismissed, one told me i was getting old,,,,,(i am 50)
Do your doctors treat your symptoms individually or collectively: my rhumotolgist is finnaly treating my pain,,,lyrica
Describe your experience with doctors: i feel like they think it is in my head., i asked one doctor about a medical retirement, and i was completely blown off. the courage it took me to even ask was outragous. i love teaching and i feel like now i am not doing a good job. i want to retire (after 21 years) on a posiive note, not be kicked out for being sub standard. i am heading that way, i am soooooo tired and i hurt sooo badly every day.
What remedies or medications have you tried: lyrica and skelatin
What makes you feel better: they do
What makes you feel worse: no meds i completely stiffen up and i can hardly move.
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: natural foods
Have you tried any thyroid specific treatments: no
Your theories or comments: doctors please listen to your patients
Are we missing any important questions: no

 

09/30/2008
First Name: sharon
Age: 34
Male or Female: female
City: glasgow
State/Province: scotland
Country: scotland
How long have you lived there: for life
Where were you born: glasgow
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: mechatronic tech.now full time mum
How has Fibro affected your ability to work: yes
How has Fibro affected your life: i still think i can do things and have to stop because i cant do anymore ,sore for days later
What were your first symptoms: was six months pregnant had pains in the middle of the inside of my neck told it was thursh iven meds went away , but kept coming back.
Your age at onset of symptoms: 26 then told it was fibro. at 30
How fast was your rate of decline: by the time i was 28 third pregnancy was told it was carpal tunnel then 18 months later told i had fibro.
What are your current symptoms: pain in every joint ,small of my back fells crushed,feet swell,stomach swells,constant headache,hands in constant pain,cant remember my name sometimes ,forget what i was talking about,balance off,hearing sometimes goes,and feeling about 100.
Number of years since you developed symptoms of fibromyalgia: about 9 years
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: about 6-7 years
Describe the extent of your brain fog: can be talking to someone and forget what i was saying and who i'a talking too,where i am .forget what i was doing two minutes ago but remember what was was doing two years ago.
Estimate number of doctors you have seen for Fibro related symptoms: about 10
Do your doctors tend to focus on all your Fibro symptoms: i have meds to help my sleep which also help with cronic pain,meds to ease the inflamtion in my joints.
Do your doctors treat your symptoms individually or collectively: i wouldn't say treat my symptoms just help manage them
Describe your experience with doctors: it feels like i have gone ten rounds with a tumble dryer and then been thrown out . i cant hold on to things, i cant tie things like laces or do buttons because they hurt to much.when someone holds me its like they are squeezing my arms so tight thier hands are turning white.i cant let anyone even touch me it is too sore.
What remedies or medications have you tried: gabapentain,amatiptalene-on that now,diclorofenic- on now
What makes you feel better: hot tubs, hot soaks , warm beds
What makes you feel worse: change in weather,being too hot, stress, noise, bright lights too, normal movements
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 spicy food, cut back on dairy,try to eat a balanced diet.
Have you tried any thyroid specific treatments: no
Your theories or comments: a link with kidney infections, ibs and when younger doing a lot of exercise then stopping quickly
Are we missing any important questions: family history of the same symtoms but not named.

 

09/30/2008
First Name: alica
Age: 42
Male or Female: female
City: farmington
State/Province: usa
Country: usa
How long have you lived there: 9 months
Where were you born: tennessee
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: yes, not ready to give up
What is Your Line of Work: i was in painting 13 years sometimes thought exposure to chemicals may have been cause. now working at home depot as an associate in the garden department very demanding on me
How has Fibro affected your ability to work: i often hurt after each day of working from awkward movements and lifting heavy things. using my hands alot and walking alot causes me pain also. im fatigued and in pain at the end of my shifts.
How has Fibro affected your life: well when i come home i dont usually feel good enought to work around the house including fixing dinner until after i have rested often taking medication to relieve pains and hot baths in epsom salt and taking a nap
What were your first symptoms: onsset suddenly waking up oneday with extreme muscle weakness in legs and arms.. pain all over my body and fear causing depression. at this time i worked to hard and was in much family stresses.i went to the doctor and she ruled out many illness and diagnosed me with fibromyalgia. she put me on a 5 medication therapy lasting 2 years with a gradual getting better with medications like a pain med, an antiinflamitory, a sleep med, anti depressant etc.
Your age at onset of symptoms: 32
How fast was your rate of decline: sudden to daily issues for a long while
What are your current symptoms: im in a lot of pain daily that moves all over my body from day to day. i cant sleep thru the night. i only take naps 1-2 hour intervals then waking. sometimes i can go back to sleep and other times i cant. i hurt so bad after a day at work somedays worse than others. the pain is moderate to severe. i hurt like a person having started a new weight lifting program after the 3rd day well i experience this after physical exertion such as lifting heavy things or awkard body contortions and sustained movements for a length of time. this causes me to have so much pain in my body. i often come home unable to do house chores or even making dinner without taking pain meds, resting, or soaking in a hot bath of epson salt.also most recent i gained 15 lbs in 2 months and a loss of appetite. this is so strange a feeling ..preceeding this was a whole week of gas and bloating.
Number of years since you developed symptoms of fibromyalgia: 10
Do your symptoms include brain fog: yes i experience what i often call partimers... sometimes i cant remeber things i should. or able to think clearly if so tired or in pain
Number of years since you developed the brain fog: 21
Describe the extent of your brain fog: if im very tired i cant think when asked to make decisions. i often forget things told to do. i often cant remebember from day to day things i did. i have trouble even knowing what day of the week it is.
Estimate number of doctors you have seen for Fibro related symptoms: 4
Do your doctors tend to focus on all your Fibro symptoms: only the first doctor did the rest treat me like its all in my head or i jsut want some drugs or it msut be something else taking a lot of test.
Do your doctors treat your symptoms individually or collectively: individually and one collectively saying the anti depressant wil cure all my problems lol so i changed doctors.
Describe your experience with doctors: doctors either have their opinions already set about things. i hate ith when they give me a blanket cause for something without really seeking the truth from me
What remedies or medications have you tried: i tried doing a lot of vitamins , melatonin, epson salt soaks, lots of ibuprophen and naproxan, i took some soma from my mom this helped too.
What makes you feel better: resting and pain meds, a hot bath.
What makes you feel worse: not having much sleep and doing strenuous things at work
Have you tried avoiding fluoride in your diet: yes because once i heard that it is actually bad for you. but i am currently using it now
If so, which sources of fluoride: water and toothpaste but i dont have the water purifier now.
Have you made dietary changes to avoid any other neutrotoxins: im not sure what neurotoxins are..?
Have you tried any thyroid specific treatments: no and ive never heard of any yet
Your theories or comments: i did think that the paints i used to work with may have contributed to this condition. but i have also suffered many traumas thoughtout my life too. but i cant help but think there has to be some underlyiing problem in my body.
Are we missing any important questions:

 

09/29/2008
First Name: Jen
Age: 39
Male or Female: Female
City: North Hollywood
State/Province: USA
Country: USA
How long have you lived there: 15
Where were you born: Chicago, Illinois
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
How has Fibro affected your ability to work: It is very difficult to sit at my desk at work. I am in constant pain and always tired. It usually takes everything I have to get through a day of work and I'm so exhausted by the time I get home I can't do even the simplest household chores without forcing myself. I use my weekends usually just to recuperate from work, and start all over again on Monday.
How has Fibro affected your life: Less Energy, Crabby and impatient, tired all the time, can not do more than the minimum in terms of activities. going out to dinner is a chore, and event. Forget about dinner and a movie, or bowling. It's impossible to catch up on rest. In pain ALL the time, except when medicated.. and then it still hurts.
What were your first symptoms: CHRONIC EXHAUSTION!! I think being tired all the time and muscle pain, shoulder and back pain. It's hard to say since the symptoms may or may not have been of Fibromyalgia. I had some major exhaustion and stress going on, then I had some lower back problems, it was downhill from there. I got into a car accident about 3 years ago, just as the back was almost healed.
Your age at onset of symptoms: 37
How fast was your rate of decline: Fast!
What are your current symptoms: Lower left back ache, now going down the left leg and right shoulder pain, knee join pain on the right. My leg and back and shoulder muscles get tight like rocks. Around my knee aches and aches and aches. Headaches sometimes. Insomnia. Depression, Cranky from the pain.
Number of years since you developed symptoms of fibromyalgia: 3-5?
Do your symptoms include brain fog: Not really, but the medication does make me a bit foggy at times.
Number of years since you developed the brain fog: N/A
Describe the extent of your brain fog: Vicodin/Muscle relaxer induced.
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: Not either really. I have had MRI for back problems, and been MRI on knee. Tiredness tested blood tests all close to normal. Good cholesterol very low. Rest is normal. Only clinical result is a minor protruding disc at L5 - S1. 2MM. My Knee Specialist seemes to think there is nothing wrong with my knee so I wonder why it hurts and aches all the time.
Describe your experience with doctors: My doctor said, well.. sometimes bodies hurt.
What remedies or medications have you tried: I have been using Vicodin (I'm now addicted to it.) and Methocarbomol Muscle relaxer, as well as Pepcid A/C for nausea. Other things tried were I was on sulindac, Naoproxen, and 800 mg Ibuprophen. I would love to quit the Vicodin, but it is the only thing that makes me able to get through a day of work and hides the aches and pains.
What makes you feel better: Pain Medication, Rest, Sleep, No Stresses, Massage, Hot baths / Jacuzzi.
What makes you feel worse: Cold, changes in weather, Stress, Stress, Stress, Sitting for long periods of time, not enough rest / lack of sleep.
Have you tried avoiding fluoride in your diet: No
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: I have tried to eat healthier and loose some weight to help my back problems. I love salad and veggies so it isn't too difficult.
Have you tried any thyroid specific treatments: No - My Thyroid test at the Doctor came out normal.
Your theories or comments: Vicodin works for the pain, but I wish there was something else NOT anti-depressant related to treat. I would like to ask my doctor for Vicoprophen, to replace the tylenol with ibuprophen, but I am afraid he would jsut take away the vicodin now.
Are we missing any important questions: No

 

09/29/2008
First Name: kathy j.
Age: 47
Male or Female: female
City: montevideo
State/Province: united states
Country: united states
How long have you lived there: 22 years
Where were you born: mpls mn
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: did line work and did alot of years of day care
How has Fibro affected your ability to work: totally unable to work outside the home and as for daycare im hardley able to care my own grandchild witch i would love to spend more time with
How has Fibro affected your life: i believe i was a very busy active person now with the pain and slow mememory things are way different today versees years before fibro pain is a constant pain that even with pain meds it never seems to be under control you do your best
What were your first symptoms: The bottom of my feet felt like some one had bet them while i had slept
Your age at onset of symptoms: 37
How fast was your rate of decline: with in the first 2 years i thopught i was going to be in a wheel chair i hurt so badly i had a hard time getting out of bed to function or care for my self
What are your current symptoms: still servere pain but somewhat controlled with the fenthyl pathches and the vicidion and neurtion and lots of excerise and wonderful dr care
Number of years since you developed symptoms of fibromyalgia: 10 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: cannot remember things moment to monnmont have to have note books with me at all times to remenber appts and have to have specail places to put shoes ,keys jackets,ets. Otherwise ill lose or forget everthing im very grateful to have a very understanding boyfriend who doesnt mind honey were did i put that hundred times a day
Estimate number of doctors you have seen for Fibro related symptoms: 5
Do your doctors tend to focus on all your Fibro symptoms: not all ive been really lucky my main doc has kept with me thur all
Do your doctors treat your symptoms individually or collectively: indiviually
Describe your experience with doctors: alot of them dont always believe the pain amount of
What remedies or medications have you tried: ansaids, opaiorts pain reievlers,injection the pain points heat theapy pool theapy
What makes you feel better: some of the pain meds work for a while the excerise works the best nad the rest when the pain just gets out of control
What makes you feel worse: weather changes,stress,for getteing to change pain patch on time
Have you tried avoiding fluoride in your diet: yes
If so, which sources of fluoride: tap water
Have you made dietary changes to avoid any other neutrotoxins: stopped sugar subutatete
Have you tried any thyroid specific treatments: just what been given by my doctor
Your theories or comments: is this disease sometimes caused by a trama such as a severe infection one has suffered and all most died from? Been told maybe this was the cause.
Are we missing any important questions:

 

09/28/2008
First Name: Deb
Age: 52
Male or Female: female
City: greensboro
State/Province: usa
Country: usa
How long have you lived there: 3 years
Where were you born: missouri
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: y
What is Your Line of Work: pr
How has Fibro affected your ability to work: no energy, so I am not so productive as I could be
How has Fibro affected your life: unable to do the things I love to do, sew, make jewelry, crafts.
What were your first symptoms: IBS< pain
Your age at onset of symptoms: 20, 15,
How fast was your rate of decline: Not bad until the last 4 years.
What are your current symptoms: severe pain and fatique, ibs
Number of years since you developed symptoms of fibromyalgia: 35
Do your symptoms include brain fog: YES
Number of years since you developed the brain fog: 5
Describe the extent of your brain fog: Go to get something from another room, forget what I went for, return to first room, remember what I went to get, go AGAIN to get whatever, FORGET AGAIN or get distracted and FORGET.
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: Endochrine doctor simply said,"you have Fibromyalgia" and left the room. My next appt set for one year from now. She did not even suggest who to see, etc. My chiropractor, Great Doctor, is treating me on an as needed basis, about once a week.
What remedies or medications have you tried: Hot bath soak in Epson Salt.
What makes you feel better: Nothing yet
What makes you feel worse: Thinking of how this has made me unproductive.
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: Unaware of these items.
Have you tried any thyroid specific treatments: Synthroid .125 mg daily
Your theories or comments: Cannot believe my Endochrine Doctor left me hanging without direction for help.
Are we missing any important questions: Sleep questions. I wake up several times during the night, wake up tired.

 

09/27/2008
First Name: Mary
Age: 61
Male or Female: F
City: Landenberg
State/Province: USA
Country: USA
How long have you lived there: 35 years
Where were you born: Iowa
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: Wellness Nurse forced to leave ICU nursing - brain fog/fatigue
How has Fibro affected your ability to work: By changing from a stress inducing environment to working quietly in my office, I'm in a successful working environment
How has Fibro affected your life: I have become a healthy person as a result of learning the cause of fibro and implementing positive changes every day. Reality - my life was taken from me for 40 years.
What were your first symptoms: Awakening feeling unrested, unrelenting fatigue, irritability, blood sugar/insulin sensitivity, headache, brain fog (ADD/ADHD)severe infection in sinus, tonsils and adenoids(age 3)
Your age at onset of symptoms: 3 years earliest recall but likely earlier
How fast was your rate of decline: From birth-college, I held my own as long as I had enough sleep. At age 30-31 marriage challenges, and death of both parents within 4 months at 32 due to sudden cardiac death, then best friend and father-in-law died of cancer. The stabbing pain in the muscle suddenly became severe and overwhelmingly frightening. From there all downhill until 1997
What are your current symptoms: Most symptoms are gone but experience fatigue with less than 7-8 hours sleep, eye stress with excess work on computer and blood sugar issues with high glycemic carbs.
Number of years since you developed symptoms of fibromyalgia: Life long symptoms - born to a mother with severe iodine deficiency and a father at White Sands NM during WWII
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: lifelong
Describe the extent of your brain fog: today - the brain fog is related to refined high glycemic foods which are difficult to completely exclude in the American diet (sad)
Estimate number of doctors you have seen for Fibro related symptoms: 4
Do your doctors tend to focus on all your Fibro symptoms: At age 21, I realized this was an iodine problem but could not get doctors to treat ne as thyroid studies were all normal
Do your doctors treat your symptoms individually or collectively: They didn't know what to do with me - use of antibiotics were the drugs of choice
Describe your experience with doctors: I left traditional medicine treatment after leaving frustrated as I was told, "get used to being the way you are."
What remedies or medications have you tried: OTC anti-inflammatory treatment many antibiotics glyconutrients, enzymes of every discription, rife, patches to restore energy, glutathione, etc NCD, CoQ10, too many nutritionals to list
What makes you feel better: iwater hydration,iodine, prickly pear cactus, organic alfalfa juice, monoatomic gold, exercise 7-8 hours rest,
What makes you feel worse: Lack of rest, any fluoride rich food, stress
Have you tried avoiding fluoride in your diet: yes
If so, which sources of fluoride: it is very hard to determine if the fluoride was primary or iodine deficiency in my case
Have you made dietary changes to avoid any other neutrotoxins: green tea, caffeine, no exercise high glycemic foods, bad fats, not enough fat in diet, too much protein
Have you tried any thyroid specific treatments: I believe at age 21 I knew what was wrong, tried to find a doctor to treat me for iodine deficiency but couldn't find anyone who was willing to treat me.
Your theories or comments: Low levels of iodine are creating the early fluoride toxicity issues as iodine is displaced in every cell of the body
Are we missing any important questions: Is your health improved, the same or deteriorating at the present time? If there is one recommendation, what would it be?

 

09/27/2008
First Name: Michelle
Age: 26
Male or Female: Female
City: Columbus
State/Province: United States
Country: United States
How long have you lived there: 4 years
Where were you born: Virginia
Is this the first time you have taken our questionnaire: Yes
If not, why are you returning:
Are you still working: yes, part time
What is Your Line of Work: retail
How has Fibro affected your ability to work: I have had to quit 4 jobs because they would not let me have enough sick time off or they expected me to work more hours than I was physically able.
How has Fibro affected your life: I cannot truly recount the myriad of ways in which Fibro has altered my life. I am 'sick' almost every day, but have learned to live with a base level of pain. On my bad days I am unable to walk or get out of bed.
What were your first symptoms: At 18 I began to get extremely tired after eating - to the point that I would come close to passing out. My knees started hurting at strange times (19/20).
Your age at onset of symptoms: 21
How fast was your rate of decline: Almost immediate; at 21 I started waking up with stabbing pains everywhere in my body - it only continued to get worse.
What are your current symptoms: Severe fatigue, pain all over my body, occasional confusion (fibro-fog), IBS, twitching/muscle spasms, painful periods
Number of years since you developed symptoms of fibromyalgia: 5 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: I only get Brain Fog when I have been overworking myself. I will forget names of people or objects and I will have a hard time concentrating on abstract ideas.
Estimate number of doctors you have seen for Fibro related symptoms: 5
Do your doctors tend to focus on all your Fibro symptoms: No. Often my symptoms fluctuate so much that I will not be presenting one part of Fibro (like IBS) so the doctor will tell me they can't do anything about it.
Do your doctors treat your symptoms individually or collectively: both. I have had doctors who gave me generic Fibro pills and others who focused on eliminating specific problems one at a time.
Describe your experience with doctors: My first Fibro doctor was a particularly unhelpful arthritis specialist who told me to my face that he did not believe Fibo existed. The last doctor I had was very good; she listened to me.
What remedies or medications have you tried: amitriptyline, tramadol, gabapentin, colonodine, various sleep aids (like trazodone and ambien). Currently I do not have health insurance and have found that alleve takes the edge off of my pain.
What makes you feel better: massaging my shoulders and legs, sleeping 20+ hours, baths
What makes you feel worse: too much sugar or refined foods, over exertion, 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:
Are we missing any important questions:

 

09/26/2008
First Name: Lisa
Age: 31
Male or Female: female
City: Frisco
State/Province: USA
Country: USA
How long have you lived there: 6 months
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...kind of
What is Your Line of Work: Fine Art
How has Fibro affected your ability to work: Some days I can work, some days...not at all.
How has Fibro affected your life: Income is an issue, being that I cant get much work done. I rarely feel well enough to go out or do anything I dont absolutely have to.
What were your first symptoms: Nausea. Non stop nausea.
Your age at onset of symptoms: 21
How fast was your rate of decline: 5 or 6 years, still getting worse now though.
What are your current symptoms: Nausea, fatigue, joint pain, weakness, dizzyness, cant concentrate on anything, random pain all over. My skin is sensitive to the touch. Stiffness in the mornings that sometimes gets better as the day progresses. I wake more tired than I went to sleep.
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: I have a hard time focusing on any one thing. I cant remember even simple things. It gets to the point where I cant communicate by speaking at all. Nothing comes out right and I have to just give up out of frustration.
Estimate number of doctors you have seen for Fibro related symptoms: 8
Do your doctors tend to focus on all your Fibro symptoms: now yes. Originally no, they focused on one thing at a time.
Do your doctors treat your symptoms individually or collectively: Individually
Describe your experience with doctors: Not good. I was made to feel inane after years of testing with no answers. I finally gave up. Last year my symptoms got worse again so I went in for bloodwork just to make sure nothing would show up. This time I found a Dr who sent me to a rheumatologyst(sp?) who diagnosed me with fibro. Until that point I had completely given up on drs. The medications they would put me on just made things worse.
What remedies or medications have you tried: I refuse to take medication after having been given so many things that made matters worse in the past. Im not a fan of western medicine at this point.
What makes you feel better: Sunlight seems to help a bit with the nausea. Naked juice, fruits and veggies.
What makes you feel worse: Carbs, sugar, anything unnatural (fake butter, artificial sugars, boxed/bagged/canned items etc), tap water, stress, physical activity, lack of sleep.
Have you tried avoiding fluoride in your diet: yes
If so, which sources of fluoride: toothpaste, Rx drugs, tap water
Have you made dietary changes to avoid any other neutrotoxins: I dont eat anything with wheat, rye, barley or oats. I avoid carbs, sugar and anything man made.
Have you tried any thyroid specific treatments: no
Your theories or comments:
Are we missing any important questions:

 

09/21/2008
First Name: Jude
Age: 53
Male or Female: Female
City: Santa Barbara
State/Province: USA
Country: USA
How long have you lived there: 23 years
Where were you born: Utah
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: Aesthetician
How has Fibro affected your ability to work: Yes
How has Fibro affected your life: yes
What were your first symptoms: Migraine that lasted 5 days and ended up in the ER. Pain on all of the trigger spots. BUT I feel it started with a major bout of Strep throat right after my daughter was born in 1976. BUT I think the hypothyroid has been there forever, or so it seems. Incest was the initial onset of all of this.
Your age at onset of symptoms: 13
How fast was your rate of decline: slow but consistent. I feel that I have been using up my reserves slowly and I am running out, which shows up as a need for more medication just to get thru the day and go to work to take care of myself...struggle each day.
What are your current symptoms: Pain, IBS, no restoritive sleep, need for 8 to 10 hours a nite, no desire to do anything or be with people beyond work, nausea at night, mild ongoing headache, stiffness, pain in feet mostly in the am, pain upon waking that takes a while to move, fibrofog, language problems at times (switching words), menopause (I use bio-identical hormone replacement), tooth pain, jaw pain, blurry vision, leg pain on most days that feels horrid, weight gain with no reason for it that is slowly getting worse (usually a size 5..now pushing a 16), mostly stomach, hips and thighs, NO desire to exercise..too much pain and no energy to do so, close to tears all the time, feeling at my wits end. Reclusive, alone and afraid to pursue a life with anyone. Miss being in a relationship. My only connection is with my children (who live in town) and my clients. No energy to date or anything else, and no spare income to do so.
Number of years since you developed symptoms of fibromyalgia: 1976 as far as I know for certain
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: same
Describe the extent of your brain fog: above...some days worse than others especially if the weather if foggy (interesting!), cloudy, low pressure outside. Need SUN as much as possible.
Estimate number of doctors you have seen for Fibro related symptoms: 8
Do your doctors tend to focus on all your Fibro symptoms: not really. There really isn't any doctor in SB that gets fibro or even wants to. All they do is push drugs.
Do your doctors treat your symptoms individually or collectively: neither really.
Describe your experience with doctors: Above.
What remedies or medications have you tried: 5htp, b12,b6, valerian, magnesium, malic acid, omega 3, dhea, coq10, glconutritionals, vitamin/mineral supplements (good ones)....and vicodan,ambien, anti-depressents, lyrica, gabapentin, namenda, all of the sleep meds, ultram, even GHB (which I should have sued the doctor over), cymbalta (horrid!),
What makes you feel better: Vicodon on some days, ambien to sleep, that's about it.
What makes you feel worse: weather, stress, depression
Have you tried avoiding fluoride in your diet: no..on well water, no flouride in water,
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: tried to remove gluten, that didn't work, not a very good diet, because food just isn't that appealing most of the time. I eat my main meal at lunch...I eat pretty good, just not enough.
Have you tried any thyroid specific treatments: Amour only --- I stopped at 180 mg because my other doctor put a scare into me about. they don't agree..so what am I too do!!!
Your theories or comments: I need help and I don't know where to turn. I checked out SSDI but that would cause even more depression and reclusiveness and I can't live on that amount of money...and wait until they decide to make a decision. Frustrated beyond the beyond. I am a survivor and a fighter but I am really really tired of it. I am NOT suicidal at all. I just want a life that makes sense.
Are we missing any important questions: Not that I can think of.

 

09/21/2008
First Name: Liz
Age: 54
Male or Female:
City: Portland
State/Province:
Country:
How long have you lived there: 20 years
Where were you born: Portland,OR
Is this the first time you have taken our questionnaire: Yes
If not, why are you returning:
Are you still working: Yes
What is Your Line of Work: Writing, editing, proofreading
How has Fibro affected your ability to work: Yes, I can't concentrate as well.
How has Fibro affected your life: It has lowered my patience theshhold
What were your first symptoms: Sharp, stabbing pains all over.
Your age at onset of symptoms: 48
How fast was your rate of decline: Six months
What are your current symptoms: Same as above, sharp stabbing pains all over...an unusal presentation. Fatigue.
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: One
Describe the extent of your brain fog: It is only present about 10% of the time.
Estimate number of doctors you have seen for Fibro related symptoms: 1
Do your doctors tend to focus on all your Fibro symptoms: Yes
Do your doctors treat your symptoms individually or collectively: Collectively
Describe your experience with doctors: I felt I know as much as my fibro. "specialist" since I did so much research.
What remedies or medications have you tried: Aerobic exercises
What makes you feel better: Aerobic exercise, warm weather, no wind and no barometric changes.
What makes you feel worse: Cold, stress, barometric changes.
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: There is some new research that is coming out this year that ATP in the body is involved.
Are we missing any important questions: Perhaps a good one is, "Are your friends and family understanding?"

 

09/20/2008
First Name: peggy
Age: 52
Male or Female: female
City: seymour
State/Province: USA
Country: USA
How long have you lived there: 47 years
Where were you born: Seymour,Indiana
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: food service director
How has Fibro affected your ability to work: yes,very much.
How has Fibro affected your life: yes.
What were your first symptoms: extreme muscle pain.
Your age at onset of symptoms: 51
How fast was your rate of decline: every month it gets worse.
What are your current symptoms: extreme fatigue,and muscle pain
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: I CANT THINK ITS AS THOUGH MY THOUGHTS GET LOST FOR AWHILE.
Estimate number of doctors you have seen for Fibro related symptoms: 7
Do your doctors tend to focus on all your Fibro symptoms: SOMETIMES
Do your doctors treat your symptoms individually or collectively: INDIVIUALLY
Describe your experience with doctors: doctors,dont understand they want to give you pain pills instead of a cure
What remedies or medications have you tried: lerica,steroid shots,steroid pills,muscle relaxers,pain pills vitamin b-12 shots.
What makes you feel better: lerica,muscle relaxers,steriod shots,b-12 shots,percosets
What makes you feel worse: when I become to tired,or a big change in the weather,sometimes it just happens for no reason.
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: my pain comes and goes like a ocean wave and each time it comes in harder and harder the pain is so great at times that it makes you think that you just dont want to live if you are going to hurt this much all of the time. I hate shots and I dont want to live on pain meds the rest of my life I want a cure not a quick fix.
Are we missing any important questions: how could a person be completly fine one moment then the next be in so much muscle pain that you cant take it and feel up and then so extremely fatigued that you feel like some-one has unplugged your energy source right out of you and the sad part of it is,you never know when this will hit you

 

09/18/2008
First Name: Betty
Age: 72
Male or Female: Female
City: Virginia Beach
State/Province:
Country:
How long have you lived there: Since 1949
Where were you born: Selma, AL
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 from Post Office
How has Fibro affected your ability to work: In the home, yes.
How has Fibro affected your life: In every way you can imagine. Can't unscrew any caps without help. Cannot lift lightweight items. Cannot sit long. Cannot stand long. Cannot walk without walker. Have to have help for everything except bathing.
What were your first symptoms: Pain in shoulders, neck, arms. Later...legs and feet. Now in hands, buttocks, back & ribs.
Your age at onset of symptoms: 1. 46, 2. 50, 3. 52
How fast was your rate of decline: Pretty fast, compared to other people my age.
What are your current symptoms: Constant pain all over my entire body, all the time.
Number of years since you developed symptoms of fibromyalgia: 26.
Do your symptoms include brain fog: Yes
Number of years since you developed the brain fog: 26.
Describe the extent of your brain fog: Feel too tired to concentrate. Sometimes confusion, unable to sort things out and memory loss starting back as early as 1982, when I was only 46. This has not improved.
Estimate number of doctors you have seen for Fibro related symptoms: 6
Do your doctors tend to focus on all your Fibro symptoms: Yes. My Rheumatologist gives the same medicine for Arthritis & Fibromyalgia...Mobic. He prescribes Neurontin for the nerve pain and insomnia.
Do your doctors treat your symptoms individually or collectively: My Primary Physician treats my high cholesterol. My Gastroenterologist treats my IBS & Diverticulosis.
Describe your experience with doctors: They all say they're treating my old age, which may be true. However, if I were only 20 years old, I'm afraid I would still be treated much the same way. The two male doctors don't want to listen. The female doctor listens better, but is quick to pass me off to the specialists. None of the doctors I see or have ever seen care about solving the mystery of Fibromyalgia. They just want to finish their day's work, write the prescriptions and send you on your way. when I have the occasional bout of Bronchitis my Pr. doc complains if it occurs before my cholesterol checkup!
What remedies or medications have you tried: Every heat wrap that was ever invented! Rubs, creams, lotions with hot peppers (hurts my skin).
What makes you feel better: Heat and a Theraphy Cane suggested by a physical therapist for pushing on trigger points.
What makes you feel worse: Being awake for 24hr. time spans, rainy or humid weather, forcing myself to do too much housework in spite of the pain.
Have you tried avoiding fluoride in your diet: No.
If so, which sources of fluoride: I refuse it at the dentist. I drink bottled water. Didn't know it was in prescription drugs.
Have you made dietary changes to avoid any other neutrotoxins: No. didn't know about these either.
Have you tried any thyroid specific treatments: No.
Your theories or comments: My muscle pain didn't start till I was given the statin drug, Mevacor for high cholesterol. It is my belief if I had never taken that drug, I would not have this pain today. I've been on at least 6 of them over the years. I've been told by doctors the effect is cumulative, and the pain will never go away at this point. Maybe it was a coincidence, the pill, then the pain, but you can't convince me. I am taking Crestor today. The pain continues.
Are we missing any important questions: Have you ever asked anyone about Statin drugs?

 

09/18/2008
First Name: Jenny
Age: 39
Male or Female: Female
City: Charlottesville
State/Province: USA
Country: USA
How long have you lived there: 12 years
Where were you born: Ilinois
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: Writer
How has Fibro affected your ability to work: Yes, cannot do jobs that require standing (enjoy part-time work in retail)
How has Fibro affected your life: Huge impact! Many days my ability to enjoy life and be productive is severely limited. It's hard to relate to people when you're thinking about how bad you feel.
What were your first symptoms: Headaches, muscle pain and stiffness I had carpal tunnel and plantar fasciitis (may have been first?) No GI symptoms
Your age at onset of symptoms: 30
How fast was your rate of decline: Slow for 10 years, then a fast decline this year
What are your current symptoms: Relieved because I have it almost cured!
Number of years since you developed symptoms of fibromyalgia: 10
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 3
Describe the extent of your brain fog: I lose my train of thought Bad memory Can't concentrate
Estimate number of doctors you have seen for Fibro related symptoms: 1 (a specialist)
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. Dantini had fibromyalgia and specializes in it, so he handles it beautifully!
What remedies or medications have you tried: Antivirals for viruses Elimination diet for food allergies. EXCELLENT results
What makes you feel better: Sticking with my diet Eating foods with omega 3 fats
What makes you feel worse: Stress!!!! Eating the wrong foods
Have you tried avoiding fluoride in your diet: yes
If so, which sources of fluoride: All of these
Have you made dietary changes to avoid any other neutrotoxins: avoid restaurants to avoid MSG Organic only
Have you tried any thyroid specific treatments: No
Your theories or comments:
Are we missing any important questions:

 

09/17/2008
First Name: michele
Age: 46
Male or Female: female
City: perth
State/Province: australia
Country: australia
How long have you lived there: 17 years
Where were you born: england
Is this the first time you have taken our questionnaire: no
If not, why are you returning: to update and remedies tried
Are you still working: no
What is Your Line of Work: retail manager ladies fashion
How has Fibro affected your ability to work: had to stop as i could not get through the day as pain was so bad.standing was agony.
How has Fibro affected your life: ruined it totally can't do the things i used to .feel sad a lot wishing i could shake this crap.
What were your first symptoms: pain in arms and legs. crashing fatigue,ibs and feeling weird in myself.
Your age at onset of symptoms: 42
How fast was your rate of decline: slow decline,felt like i had a virus or something like chronic fatigue.
What are your current symptoms: terrible shoulder and neck pain.fatigue bad muscle cramps in calves,swallowing problems.
Number of years since you developed symptoms of fibromyalgia: 4
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 3
Describe the extent of your brain fog: some days feel as if i am in a coma.feel unresposive like the lights are on but nobodys home.
Estimate number of doctors you have seen for Fibro related symptoms: 2
Do your doctors tend to focus on all your Fibro symptoms: no they just don,t get it.
Do your doctors treat your symptoms individually or collectively: individually
Describe your experience with doctors: crap.its like talking to wood.they look at you as if your nuts and start wtiting a script for anti depressents. usually come out of there more fed up and bloody frustrated.
What remedies or medications have you tried: endep coq 10,vitamins apple cider vinegar,virgin coconut oil.
What makes you feel better: believe it or not stillness meditation. i am still learning and some of the pain disapears and takes the stress away.hot showers and a sympathetic ear helps. get sick of people who don't understand how bad we feel.
What makes you feel worse: not sleeping, stress, doing too much some days. worrying about the syndrome seems to make you mental.
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: make veg juices carrot apple and ginger helps with ibs a bit.i beleive diet makes no difference. some weeks live on healthy food and the flair up is worse.
Have you tried any thyroid specific treatments: no
Your theories or comments: i am gradually getting worse can't seem to understand this factor as i do all the right things to help myself. i am becoming helpless with anxiety about fibro keep hoping someone on this site will have found a miracle. i have just come back to say it does get sooooooo bad and that it is so cruel and unforgiving.
Are we missing any important questions: yes how much mental trauma and family input is there.

 

09/16/2008
First Name: Dreama
Age: 34
Male or Female: female
City: Jackson
State/Province: USA
Country: USA
How long have you lived there: 34 yrs
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: I am a registered Nurse. I work on a Cardiac Unit in a hospital full time, and teach part time
How has Fibro affected your ability to work: I often have to work night shift, which makes my fibro worse. I have a hard time getting out of bed to go to work, and when I am on my feet all day I feel terrible. I have to work 12 hr shifts, which is difficult. I also have some periods of "foggy" thinking, which affects my teaching job
How has Fibro affected your life: It has affected my relationship with my husband because I am often too tired to keep up with the housework and the kids, grocery shopping, running errands, etc, and he thinks I am just lazy. It affects my ability to be a good mother to my 2 girls because I am too tired or in too much pain to play with my 2 yr old and my 10 yr old always wants to go places and I have to tell her that we will have to see how mommy feels. Also, I wonder if my 10 yr old might not have it too
What were your first symptoms: In July 2000, I started having pain in my hips and felt really weak and had flu-like symptoms and thought I had a virus, but it never went away
Your age at onset of symptoms: 26
How fast was your rate of decline: Got a lot worse over the first year, then stayed about the same for years, has gotten worse again in last 2 yrs
What are your current symptoms: Pain in both legs all the time, sometimes in my shoulders and arms (achey), depression, fatigue, restless legs all the time, even in the day time
Number of years since you developed symptoms of fibromyalgia: 8
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 6
Describe the extent of your brain fog: Just forgetful, can't think of what I want to say, sometimes really depressed and feel like I am sometimes detatched.
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: No
Describe your experience with doctors: I went to a family doc when I first developed the symptoms, thening I had a virus. she checked me for everything under the sun, all negative. she sent me to a rheum who said I had fibro, gave me ultram, elavil and vioxx, and said come back if I need to. then she sent me to another rheum. several years later, whom was not helpful at all. when I told him my symptoms, he acted like he'd never heard of such a thing. he put me on celebrex and cut my elavil down because I was tired all the time.
What remedies or medications have you tried: Ultram, Elavil. both helped but elavil made me gain a lot of weight. several antidepressants, which were helpful but made me tired. I have tried Requip for my legs but it didn't help. I go to a chiropractor who specializes in upper cervical and it is very helpful. I have taken many supplements, vitamins, herbal remedies, and I am considering accupuncture
What makes you feel better: chiropractor, ultram, although it don't help as much as it used to. elavil helps some. dhea seems to help some.
What makes you feel worse: not enough sleep, working night shift, pms, being on my feet all day, eating a lot of sweets makes me feel worse, too
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride: I do not have floride in my water. I have well water
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 all started with my neck injury. I have also wondered about heavy metals because I have well water, but no one will test me for it.
Are we missing any important questions: No

 

09/16/2008
First Name: Gina
Age: 37
Male or Female: female
City: Hominy
State/Province: usa
Country: usa
How long have you lived there: 4 years
Where were you born: Arkansas
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: Cleaning, doing bills, homeschool teens
How has Fibro affected your ability to work: yes
How has Fibro affected your life: yes
What were your first symptoms: Bones ached
Your age at onset of symptoms: 26
How fast was your rate of decline: steadily declining
What are your current symptoms: fatigue, bones ache, migranes
Number of years since you developed symptoms of fibromyalgia: 13 years
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: last 4
Describe the extent of your brain fog: Just occasionally
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
Describe your experience with doctors: I haven't been real impressed. They all have put me on depression meds. Nothing seems to really help me with my fatigue. My bones & muscles constantly ache.
What remedies or medications have you tried: Depression meds
What makes you feel better: So far nothing
What makes you feel worse:
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: not really
Have you tried any thyroid specific treatments: no
Your theories or comments: I just would like to know if there is anything I can do to help me so that I am more motivated. I can't seem to get motivated to do anything and when I do I hurt so much the next day it really wasn't worth it.
Are we missing any important questions:

 

09/16/2008
First Name: lupe m.
Age: 60
Male or Female: female
City: littlefield
State/Province: usa
Country: usa
How long have you lived there: all my life
Where were you born: morton texas
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: parts driver
How has Fibro affected your ability to work: yes
How has Fibro affected your life: yes
What were your first symptoms: my neck started to hurt, then my hips
Your age at onset of symptoms: 59
How fast was your rate of decline: perty fast
What are your current symptoms: neck pain arms and shoulders my hip.just pain all over i also have candida
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: 3
Describe the extent of your brain fog: i would get real dizzy could'n concentrate
Estimate number of doctors you have seen for Fibro related symptoms: 3
Do your doctors tend to focus on all your Fibro symptoms: they taught it was lupas, then polymayalgia, now he saids is fibromyalgia
Do your doctors treat your symptoms individually or collectively: individully
Describe your experience with doctors: there is no words to describe some of the doctors i'v seen,i think they only care about money and not the person their treating untill now i hope i found a doctor that will listen to me.i hope!!!
What remedies or medications have you tried: right now i'm on lyrica 50mg
What makes you feel better: i haven't yet i just started my meds
What makes you feel worse: where i work i have to lift heavey parts that make me hurt bad
Have you tried avoiding fluoride in your diet: no but i will from now on
If so, which sources of fluoride: toothpaste
Have you made dietary changes to avoid any other neutrotoxins: no
Have you tried any thyroid specific treatments: i'm takeing levothyroid am also takeing acv but i plan on taking coconut oil as i get it
Your theories or comments: none right now,except that i really like this site thank you
Are we missing any important questions: no

 

09/15/2008
First Name: Becki
Age: 43
Male or Female: Female
City: Carey
State/Province: USA
Country: USA
How long have you lived there: 6 yrs
Where were you born: 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: Quality control editor...work from home through company web site.
How has Fibro affected your ability to work: Fibrofog limits my ability to concentrate to complete my job per company expectations. Fatigue and general malaise limits the time I can actually work.
How has Fibro affected your life: I no longer can keep up with my children. I no longer like to leave my home unless necessary. I no longer can make plans cause I don't know how I am going to feel.
What Were Your First Symptoms: Unknown
Your age at onset of symptoms: Unknown
How fast was your Rate of Decline: Unknown - Diagnosed early 08, but showed symptoms (unbeknownst) for years
What Are Your Current Symptoms: chest pain, arm & shoulder pain, GERD, IBS, mvp, anemia, excessive gas buildup, foot and ankle swelling, sinus problems, headaches, numbness/tingling in back/arms/hands, anxiety, cold hands and feet, insomnia
Number of years since you developed symptoms of fibromyalgia: Unknown
Do Your Symptoms Include Brain Fog: yes
Number of years since you developed the brain fog: 1
Describe the extent of your brain fog: Varies between minimal concentration to no concentration at all and lack of short term memory
Estimate number of doctors you have seen for Fibro related symptoms: 6
Do your doctors tend to focus on all your Fibro symptoms: No
Do your doctors treat your symptoms individually or collectively: Individually
Describe your experience with doctors: Chiropractors readily accept dx and willing to attempt alternative therapies, family doctor actually dx'd with statement he does not like to due to unnecessary filing for disability and treats each symptom individually with no acknowledgment of being caused or part of same dx, cardiologist only tested and dx'd mvp, neurologist only ordered MRI(not done due to unknown at time claustrophobia), surgeon only completed egd
What remedies or medications have you tried: chiropractic adjustments, iron supplements, other vitamin/mineral supplements, Nexium, Zantac, carafate, Prevacid, guafenesin, ipratropium nasal spray, Allegra, Nasonex, acidophillus...refused to take other medicines prescribed for depression and bowel spasms
What makes You feel better: Sleep
What makes you feel worse: Humidity, extreme cold, stress, normal manual labor (housework, yard work - anything with upper body usage)
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: No
Have you tried any thyroid specific treatments: No
Your theories or comments: None at this point
Are we missing any important questions: Instead of just asking when did first symptoms begin, ask when it might have been possible to have been having symptoms. I had growing pains and migraines as a child, as well as other symptoms of fibro, but was not diagnosed until this year at 43 years of age.

 

09/15/2008
First Name: SHIRLEY
Age: 59
Male or Female: FEMALE
City: ANTELOPE
State/Province: USA
Country: USA
How long have you lived there: 11YEARS
Where were you born: SANTA ROSA
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: LOW ENERGY PAIN
What Were Your First Symptoms: LOW ENGERY PAIN SWOLLEN NECK
Your age at onset of symptoms: 22 YEARS
How fast was your Rate of Decline: TWO YEARS
What Are Your Current Symptoms: SAME EXCEPT MORE PAIN WEEKNESS
Number of years since you developed symptoms of fibromyalgia:
Do Your Symptoms Include Brain Fog: YE
Number of years since you developed the brain fog:
Describe the extent of your brain fog: I FORGET ALL DAY LONG
Estimate number of doctors you have seen for Fibro related symptoms:
Do your doctors tend to focus on all your Fibro symptoms: HELL KNOW
Do your doctors treat your symptoms individually or collectively: COLLECTIVELY WITH PAIN MEDICINE
Describe your experience with doctors: TREAT ME LIKE I'M TRYING TO GET MED. AND MY CURANT DOCTOR DOESN'T BELEAVE THE DESEASE
What remedies or medications have you tried: NORCO FLEXERAL XANAX
What makes You feel better: THE MEDICINE
What makes you feel worse:
Have you tried avoiding fluoride in your diet: NO
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins:
Have you tried any thyroid specific treatments:
Your theories or comments:
Are we missing any important questions:

 

09/15/2008
First Name: Una
Age: 51
Male or Female: female
City: milwaukee
State/Province: usa
Country: usa
How long have you lived there: 30 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: psychology
How has Fibro affected your ability to work: For about 2 years I was beridden. Though I'm improved now I can't be sure I can keep appointments.
How has Fibro affected your life: My friends have gone into the wind. My finances are trashed. I can't travel or tour with severe inflammation. I'm depressed.
What Were Your First Symptoms: Tense muscles, neck ache, headaches, inability to get comfortable in bed.
Your age at onset of symptoms: age 18
How fast was your Rate of Decline: after hysterectomy for endometriosis at age 35 it was fairly rapid but I could work. Then, I collapsed at age 43.
What Are Your Current Symptoms: Severe back pain, moderate, global and persistent muscle pain. Intermittent joint pain, hypersensitivity to touch and temperature. Increased pain with sleep. Depression
Number of years since you developed symptoms of fibromyalgia: 30
Do Your Symptoms Include Brain Fog: yes
Number of years since you developed the brain fog: 8
Describe the extent of your brain fog: I can't even stand people talking to me for the first 2 hours after walking unless I take stimulants.
Estimate number of doctors you have seen for Fibro related symptoms: more than 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: I hate doctors. With rare exception they are insensitive...@#%X...
What remedies or medications have you tried: Lyrica, Topamax?, Morphine, Ultram, Oxycodone, Hydrocodone, Ativan, Omega-3, B vits, NSAIDS, Yoga, other vitamins, diets, swimming
What makes You feel better: Oxycodone or Hydrocodone with tylenol AND ibuprophen, swimming
What makes you feel worse: Yoga, Lyrica, Topamax, cold weather, sudden changes in weather, keeping in one position for a long time, walking, biking for more than 10-15 minutes
Have you tried avoiding fluoride in your diet: yes
If so, which sources of fluoride: tap water
Have you made dietary changes to avoid any other neutrotoxins: I buy food from the local whole food (organic) market.
Have you tried any thyroid specific treatments: I take synthroid
Your theories or comments: It's an auto-immune disease.
Are we missing any important questions: Have you or your family members suffered from an auto-immune disease (give examples).

 

09/15/2008
First Name: Julie
Age: 38
Male or Female: female
City: Visalia
State/Province: USA
Country: USA
How long have you lived there: 38 yrs
Where were you born: Huntington Beach, 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: accounts payable
How has Fibro affected your ability to work: hard to concentrate, tired, stiff and sore getting up and down
How has Fibro affected your life: tremendously. Stressed, anxious, in pain 24-7, can't sleep, moody, tired, irritable
What Were Your First Symptoms: tired, depressed, soreness
Your age at onset of symptoms: 33
How fast was your Rate of Decline: worse just lately
What Are Your Current Symptoms: hip pain, neck pain, knee pain, wrist and hand pain, depressed, anxiety, sleeplessness, tired all of the time
Number of years since you developed symptoms of fibromyalgia: 5
Do Your Symptoms Include Brain Fog: yes
Number of years since you developed the brain fog: 5
Describe the extent of your brain fog: can't think straight, walk into a room and forget why I'm there.
Estimate number of doctors you have seen for Fibro related symptoms: 7
Do your doctors tend to focus on all your Fibro symptoms: no
Do your doctors treat your symptoms individually or collectively: they don't treat at all
Describe your experience with doctors: they don't listen or seem to take me seriously
What remedies or medications have you tried: cymbalta, elevil, zoloft, soma, seroquil. I can't even remember them all
What makes You feel better: nothing, just laying down and resting
What makes you feel worse: elavil
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: no
Have you tried any thyroid specific treatments: no
Your theories or comments:
Are we missing any important questions:

 

09/14/2008
First Name: Candice
Age: 58
Male or Female: f
City: Beverly
State/Province: USA
Country: USA
How long have you lived there: Most of my life
Where were you born: Newburyport 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: I work in a Kennel (volunteer)
How has Fibro affected your ability to work: Had to cut way back on hours. Was having severe flare-ups
How has Fibro affected your life: Had to quite work and go on disability
What Were Your First Symptoms: overall pain & exhaustion
Your age at onset of symptoms: 38
How fast was your Rate of Decline: would go away, come back 5 years
What Are Your Current Symptoms: pain
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: lack of cogntive skills - can't think things through clearly
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: when symptoms first started, was tested for everything under the sun, info about fybro was limited, so they did not know how to treat it until recently
What remedies or medications have you tried: anti-anxiety meds, advil, vicodin, and now on Lyrica & Cymbalta
What makes You feel better: Lyrica & Cymbalta sleep
What makes you feel worse: stress, over exertion
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: no
Have you tried any thyroid specific treatments: no
Your theories or comments: I only know that something must be missing from those of us who suffer
Are we missing any important questions: Is it inherited?

 

09/14/2008
First Name: Linda
Age: 50
Male or Female: Female
City: Englewood
State/Province: US
Country: US
How long have you lived there: 5yrs
Where were you born: Port Clinton, 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: Laborer
How has Fibro affected your ability to work: I have had good days and bad.
How has Fibro affected your life: I have no Life.
What Were Your First Symptoms: Left lung hurting. They thought I pluersy. Now I know the lung is a muscle too.
Your age at onset of symptoms: 38 or 39 cant remember.
How fast was your Rate of Decline: six months from the lung incident.
What Are Your Current Symptoms: fatigue and minor muscle pain. Occasional IBS, brain fog
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: four years
Describe the extent of your brain fog: cannot remember simple words to finish my sentences cannot at times follow a simple direction at work or maybe my boss is just a bitch!! Dont know
Estimate number of doctors you have seen for Fibro related symptoms: too many
Do your doctors tend to focus on all your Fibro symptoms: not then, now they do
Do your doctors treat your symptoms individually or collectively: collectively
Describe your experience with doctors: in the past very bad. These days are much easier
What remedies or medications have you tried: Effexor XR, Trazadone and Cymbalta was my last one and taken off the Effexor XR
What makes You feel better: Effexor Xr and trazadone
What makes you feel worse: Not taking my medications
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride: everyone
Have you made dietary changes to avoid any other neutrotoxins: Definitely yes!!
Have you tried any thyroid specific treatments: no
Your theories or comments: This Janurary of 2009 I will have been med free. I had taken Effexor Xr and Trazadone for 7 years no problem. Then I started social drinking a little too much and it affected the medications. That is why I was switched to Cymbalta and I was really feeling depressed more than normal. After two months I told her it was not working she said she was going to send me to a fibromyalgia specialist. All I could see is 40.00 a visit. So my decision then was to wean my self off my medications in Starting in October of 2007 and dropping my health insurance for a year,(2008) so I can afford to buy and find the right herbs for me. I had a very rough year and now feel, okay, but i do have most of my symptoms under control. I tried Ribose for muscle pain. Did not work. So I remembered the Glutamine-SR, 12 hour muscle feeder. My sister told me about this, how we lacked it as we aged and when you work out your muscle's would not hurt. So I tried it for the muscle pain and it worked like a charm after hurting each day, I am a laborer lifting 30 to 50 lbs 70% of my time. The brand name is MHP Glutamine-SR 12 hour muscle feeder. I buy it at vitamaker.com for 39.95 online. At the vitamen stores it is around 79.00 to 89.00. It is better in powder form a 2.2 lb blue plastic container. 1 scoop a day in a 8-10 oz favorite beverage, it is tasteless and oderlerss. I put a scoop in about 14 oz of cold milk every morning. This will last you 6 months or a little more. I also take a super enzyme for my digestive system, 5-HTP for the natural serotonin that I was taking in my anti-depression perscriptions, I also take Fibro-Response which has numeroues herbs for people with Fibromyalgia. I buy this at vitacost.com for 10.63 a bottle it is 22.00 to 25.00 at vitamens stores. It says Fibro-response malic acid and MSM soothes muscles and joints 90 tablets. Although it did not work on my aching muscles it has so many other good medicinal herbs that I liked, in one tablet. serving size 3 to four tablets daily. I now take 2 or 3 daily. I also take D-3 1000 mg dialy. B-12 sublingual when I remember 500mgs , every morning I make a wheat grass drink. 20 oz water mix one tablespoon of wheat grass powder and 14 tsp of crystal light powder drink and 12 pkg of equal I also buy this at vitacost.com. I honestly can say I feel better than when I was taking the Cymbalta. I still am looking for the energy miracle. I have to sleep a good eight hours in order to do be able to work daily. I get up 3:00 am and need to be in bed the latest 7:00 pm Cancelling my Health Insurance was very risky but money is tight and with the 210.00 I was spending monthly on sometimes nothing helped me start becoming healthier, bring my liver and kidneys back I do not miss the side effects of perscription drugs when you forget to take them. I am praying to make to December 2008 with no medical problems So I can once again start my Insurance back up for January 2009 P.S. sugar is very bad for you That is my biggest weakness I crave sugar. And when I eat cake or Ice cream I relapse with fatigue and bad muscle pain for a week. I want to learn to Detox or cleansing for three days without having to starve because I get very sick when I do not eat
Are we missing any important questions: very good questions

 

09/13/2008
First Name: Kimberly
Age: 30
Male or Female: female
City: Fleetwood
State/Province: USA
Country: USA
How long have you lived there: 30 years
Where were you born: Reading 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:
How has Fibro affected your ability to work: yes
How has Fibro affected your life: yes
What Were Your First Symptoms: severe pain in my upper back
Your age at onset of symptoms: 21
How fast was your Rate of Decline: gets worse every year
What Are Your Current Symptoms: severe pain in back, legs, hands. Frequent headaches. Extreme fatigue and sleeplessness
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
Describe the extent of your brain fog: hard to concentrate on anything. I also get forgetful
Estimate number of doctors you have seen for Fibro related symptoms: 5
Do your doctors tend to focus on all your Fibro symptoms: no
Do your doctors treat your symptoms individually or collectively: collectively
Describe your experience with doctors: Not hopeful
What remedies or medications have you tried: Cymbalta, muscle relaxers, sleeping pills, pain medications. anxiety medications
What makes You feel better: nothing takes the pain attacks away. Vicodin helps sometimes but not always
What makes you feel worse: lack of sleep, walking brings on the pain as well as 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: I have no insurance at this time and no way of affording medications. I have stopped taking most of my meds for financial reasons and cannot work until I get the pain to stop.
Are we missing any important questions:

 

09/13/2008
First Name: t
Age: logan
Male or Female: f
City: austin
State/Province: usa
Country: usa
How long have you lived there: 60yr
Where were you born: tx
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: yes
What is Your Line of Work: communications
How has Fibro affected your ability to work: chronic pain and fatigue
How has Fibro affected your life: chronic pain and fatigue
What Were Your First Symptoms: began fatigue
Your age at onset of symptoms: 56 fatigue, muscle weakness, pain
How fast was your Rate of Decline: 1 year onset to present
What Are Your Current Symptoms: fatigue, transient pain in ankles & bottom of feet, forearms, shoulder & neck, low back,below knees, heels of hands, muscle weakness
Number of years since you developed symptoms of fibromyalgia: 3
Do Your Symptoms Include Brain Fog: yes
Number of years since you developed the brain fog: 3
Describe the extent of your brain fog: difficulty focusing and retaining
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: all
Describe your experience with doctors: I don't think they know how to deal with it
What remedies or medications have you tried: supplements - biotin, probiotics, omegas, calcium, topical magnesium; mobic for pain
What makes You feel better: rest and massage
What makes you feel worse: exercise, too much 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 did not know what was happening but knew something was wrong, then read about cipro
Are we missing any important questions:

 

09/11/2008
First Name: laura
Age: 41
Male or Female: FEMALE
City: battle creek
State/Province: usa
Country: usa
How long have you lived there: 41 yrs
Where were you born: kalamazoo mi
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 pharmacy
How has Fibro affected your ability to work: tired through out day, standing all day makes legs,feet and back hurt
How has Fibro affected your life: i cannot plan on doing things in advance i have to go day to day and most days just go to work then home
What Were Your First Symptoms: unsure possibly being tired all the time
Your age at onset of symptoms: 38
How fast was your Rate of Decline: about 2 years
What Are Your Current Symptoms: fatigue, pain in hands and legs the most, diarrhea
Number of years since you developed symptoms of fibromyalgia: 3 years
Do Your Symptoms Include Brain Fog: y
Number of years since you developed the brain fog: unsure
Describe the extent of your brain fog: forget where i put things and what i am doing
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: yes
Describe your experience with doctors: good relationship and thorough
What remedies or medications have you tried: cymbalta, provigil,lyrica
What makes You feel better: sleep
What makes you feel worse: eating certain foods, 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: trying to monitor msg intake,i finf that hard to do
Have you tried any thyroid specific treatments: no
Your theories or comments:
Are we missing any important questions:

 

09/11/2008
First Name: Tere
Age: 57
Male or Female: Female
City: Kalamazoo
State/Province: USA
Country: USA
How long have you lived there: All my life
Where were you born: Kalamazoo, MI
Is this the first time you have taken our questionnaire: Yes
If not, why are you returning:
Are you still working: Yes
What is Your Line of Work: Social Worker
How has Fibro affected your ability to work: More, but not significant, absenteeism. Can't exert myself the way I used to because it tires me out so easily and causes increased pain. Brain fog makes it harder to think, remember.
How has Fibro affected your life: Two positives - it has made me deepen my relationship with God and learn more about His healing and, two, I don't take physical ability and good days for granted anymore. I savor life more and look for the positive. The negative, which I am overcoming with God's help, is that I have unwittingly developed a lifestyle of illness which causes me to be hyperaware of how I'm feeling which can sometimes too easily dissuade me from taking part in life. Again, awareness is half the battle. I take way more medicine and supplements than I care to, including OTC pain relievers and I'm spending way more money than I can afford on all of it.
What Were Your First Symptoms: Well, now that I know what I know, probably the hypothyroid-like symptoms but I first started thinking fibromyalgia when I started feeling sore in all my muscles all the time. I also had progressive joint pain and general body stiffness.
Your age at onset of symptoms: 40 but the pain started at about 54.
How fast was your Rate of Decline: Over several months it worsened after just being bothersome for about a year.
What Are Your Current Symptoms: Muscle and joint pain and stiffness, brain fog, digestive problems, fatigue. Over that past few months, however, I have found some remedies that help a lot and am functioning very well.
Number of years since you developed symptoms of fibromyalgia: See Age of Onset answer.
Do Your Symptoms Include Brain Fog: Yes
Number of years since you developed the brain fog: One
Describe the extent of your brain fog: It was much worse than it is now that I'm treating it but it was pretty hard to concentrate with it.
Estimate number of doctors you have seen for Fibro related symptoms: Six
Do your doctors tend to focus on all your Fibro symptoms: Only my current doctor diagnosed Fibro. The others treated symptoms only.
Do your doctors treat your symptoms individually or collectively: The only thing my doctor has done was to prescribe Lyrica which my HMO wouldn't pay for unless I tried all the antidepressants they recommended to treat it first, even though I was already taking one. So that was that.
Describe your experience with doctors: Frustrating to say the least. I feel as if I have had to do all the legwork and research toward getting a diagnosis including getting assertive about what kinds of testing I believed were necessary and don't doctors just love that?
What remedies or medications have you tried: Well, I do take an SSRI antidepressant which is supposed to help. Who knows, maybe I would be in much worse shape had I not already been taking it when the symptoms appeared or it might never have developed had I not taken flourinated meds for so long. What I have done which has helped is taking Apple Cider Vinegar with bicarbonate of soda. I have also done hydrogen peroxide therapy which has helped a great deal with the brain fog and fatigue. I also avoid tap water and other sources of flouride. I have done cleanses but they were very hard on my system although I believe strongly in them. I've also tried borax which along with the ACV and H2O2 seems to help. I did oil pulling for a couple of months. Truly it is the homeopathic remedies that do the most.
What makes You feel better: Not dwelling on how I feel which usually requires some kind of diversion, being with others mainly and believing that as a child of God, healing is part of my inheritance.
What makes you feel worse: Exercise, exersion, sugar, too much sun.
Have you tried avoiding fluoride in your diet: Yes
If so, which sources of fluoride: Meds, tap water, tea.
Have you made dietary changes to avoid any other neutrotoxins: I'm not that familiar with the neurotoxins but I have made some dietary changes.
Have you tried any thyroid specific treatments: I'm sure I have over the years but not any prescription med. I've tried some homeopathic things but didn't notice much change.
Your theories or comments: Not my theory but I can embrace the theory of the flouride toxicity factor in Fibro which is why I'm taking steps to reduce exposure as much as possible.
Are we missing any important questions: Maybe asking if people have experienced any symptoms coinciding with the onset of their Fibro which don't appear on the usual list of symptoms. For instance, my senses of taste and smell have been affected. My sense of taste has diminished quite a bit and I almost always have the same smell like burning food in my nose. Any ideas about that?

 

09/10/2008
First Name: Catherine
Age: 30
Male or Female: Female
City: Ridgecrest
State/Province: USA
Country: USA
How long have you lived there: 4.5
Where were you born: Sacramento
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: N/A
How has Fibro affected your ability to work: A lot, mostly affects my ability to do the work itself, and to retain anything when I have to remeber certain details. Also affects your ability to get to work on time due to extreme fatigue that hits you like a flu. Sometime just waking up is the worst part of going to work.
How has Fibro affected your life: In the worst ways possible. It dipilitates me as far as raising a child, it affects going to college, not just the fatigue, but the "fibro fog," makes it sometimes impossible to learn. There is no longer the ability to give 100% to any one thing such as work. Doing basic dailey tasks make you completely drained and adds to your stress which also causes increased symptoms.
What Were Your First Symptoms: Lack of immunity, ended up in the hosptial with pnumonia and compaining of bone pain, not arthritus type of pain. I actually felt as if I had undegone Kemotherapy. The pain was in my bones and no amount of vicodine or any anti inflamatory made it go away.
Your age at onset of symptoms: 26
How fast was your Rate of Decline: One year.
What Are Your Current Symptoms: Shortness or feeling that I cannot breath right, constant head and neck pain, cronic cold and flu symptoms i.e. sore throat, sleepy, vomiting, and sometimes chronic diareah.
Number of years since you developed symptoms of fibromyalgia: It has only been 4, but if I look back to the first time I ever really had pain like this only not all the time, but every so once in a while for a week or two, it was more like nine 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: Do not remeber anything and cannot retain anything as far as learning. It has made me forget simple things I would normally remember. And more complex daily routines that I forget.
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: They do not treat them, the doctor who diagnosed me does not believe in Fibro. It was all in my head until something major happened that he could not dispute with me.
Describe your experience with doctors: Painfull.
What remedies or medications have you tried: Anti deppresants as well as anti inflamitory drugs.
What makes You feel better: Nothing/ Although sad to say alcohol.
What makes you feel worse: Not sure
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 veganism
Have you tried any thyroid specific treatments: No
Your theories or comments: My thoery of what is going on is that the ability to properly either break down or dispursement of ATP or protiens properly in the digestive area, as well as, the bodies inablity towards proper chemical reactions in the body, i.e. muscle tissue, brain stem, and digestive track or primarily in the liver, kidneys, and pancrease.
Are we missing any important questions: No

 

09/10/2008
First Name: Teo
Age: 33
Male or Female: male
City: phuket
State/Province: thailand
Country: thailand
How long have you lived there: 3 yrs
Where were you born: new zealand
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: yes
What is Your Line of Work: I trade stock market from home.
How has Fibro affected your ability to work: Negatively. Distraction of constant pain and depression has had a notable effect on my concentration
How has Fibro affected your life: Can rarely go to the gym (used to go 3 times a week). Find it physically uncomfortable going out to socialise and having sex much less frequently with my girlfriend.
What Were Your First Symptoms: Noticed s difuse pain in my quads as I walked in the garden
Your age at onset of symptoms: 32
How fast was your Rate of Decline: It has only been 4 months. After the initial decline, it seems (hopefully) to be stable.
What Are Your Current Symptoms: Nagging pain in my muscles / nerves from fingers to toes. Tends to be worse if specific muscle has been used. lethargy. irritability. limbs sensitive to touch.
Number of years since you developed symptoms of fibromyalgia: 4 months
Do Your Symptoms Include Brain Fog: yes
Number of years since you developed the brain fog: 4 months
Describe the extent of your brain fog: I could be talking and stop mid sentence, trying to think of the right word or forgetting the subject. Just seem to be less switched on.
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: I was given pain killers that didn't have any effect. I don't have confidence in the doctors that I dealt with.
What remedies or medications have you tried: variety of pain killers. low acid diet.
What makes You feel better: good night sleep. warm bath.
What makes you feel worse: alcohol. noise. dehydration.
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: I have now stopped drinking. Was getting some neuro pains in my limbs from cheap house vodkas in the town (in thailand)
Have you tried any thyroid specific treatments: yes. I tried a thyroid extract supplement. I don't feel my problem is thyroid related, I am quite slimand stable weight. In some ways I feel as before.
Your theories or comments: Initially thought that it was a virus. Now think that it is to do with a build up of toxins. Possible mosquito spray that was imposed on the area where I live. Recall having a similar sort of flu like muscoskeletal pain when insectide was used within the villa which then subsided the next day. Have also been taking dutasteride for 1 year which thought may have been contributing to my fibromyalgia. Have just stopped to see if it has an effect.
Are we missing any important questions:

 

09/09/2008
First Name: Jennifer
Age: 38
Male or Female: Female
City: Columbus
State/Province: usa
Country: usa
How long have you lived there: 38 years
Where were you born: 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: VP of Marketing
How has Fibro affected your ability to work: Yes
How has Fibro affected your life: Yes
What Were Your First Symptoms: Extreme lower back pain
Your age at onset of symptoms: 25
How fast was your Rate of Decline: Have had the same exact pain for 13 years--the part that has gotten worse over the past couple of years is extreme joint aching all over my body
What Are Your Current Symptoms:
Number of years since you developed symptoms of fibromyalgia: 13
Do Your Symptoms Include Brain Fog: no
Number of years since you developed the brain fog:
Describe the extent of your brain fog:
Estimate number of doctors you have seen for Fibro related symptoms: 6-8
Do your doctors tend to focus on all your Fibro symptoms: no
Do your doctors treat your symptoms individually or collectively: individually
Describe your experience with doctors:
What remedies or medications have you tried: I am on Lyrica which doesn't really help that much
What makes You feel better: Taking two aleve in the morning and in the evening
What makes you feel worse: Not sure
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 was diagnosed with low thyroid in May. Not sure if that has anything to do with fibromyalgia
Your theories or comments:
Are we missing any important questions:

 

09/08/2008
First Name: Christine
Age: 48
Male or Female: female
City: Otorohanga
State/Province: New Zealand
Country: New Zealand
How long have you lived there:
Where were you born: New Zealand
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: Bed & Breakfast and office work for my husbands business
How has Fibro affected your ability to work: I had to give up a part time cleaning job
How has Fibro affected your life: I am always stiff and aching esp my lower back, wake up multiple times each night to turn over to ease the pain and wake up tired and sore
What Were Your First Symptoms: General acheyness which I put down to getting older
Your age at onset of symptoms: 46
How fast was your Rate of Decline: Fairly slow at first, just general achey back. Got worse after a period of severe stress and pressure.
What Are Your Current Symptoms: My back is always sore, my arms and shoulders, right down my sides and hips, and I have tender spots everywhere
Number of years since you developed symptoms of fibromyalgia: 1-2 years, only in the past 12 months did I realise it wasn't just a normal part of ageing
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 is harder to remember new things I have learned, and it is harder to concentrate on anything unless I am super passionate and interested in it.
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 went to one doctor and he did blood tests to rule out other causes. Told me I probably had fibromyalgia and gave me NSAIDs for it. A physiotherapist tested me for tender spots and questioned me thoroughly. She focused on the lack of sleep and said I must get 4 hours uninterrupted. She recommended gentle daily exercise.
What remedies or medications have you tried: Painkillers, gentle exercise, hot shower, hot water bottles. Also in putting myself first and trying to listen to what my body wants me to do
What makes You feel better: Moving around, heat, and paracetamol
What makes you feel worse: sitting for any length of time, lying in bed
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: no
Have you tried any thyroid specific treatments: no
Your theories or comments: I am currently trying suggestions made by Dr Mickel (seen on YouTube video) about not putting everyone and everything else first above my own health, happiness, convenience etc.
Are we missing any important questions:

 

09/08/2008
First Name: Jeannie
Age: 34
Male or Female: Female
City: Peoria
State/Province: Maricopa
Country: Maricopa
How long have you lived there: 10 yrs
Where were you born: Montana
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: yes
What is Your Line of Work: Certified Ophthalmic assistant
How has Fibro affected your ability to work: sometimes it is hard for me to walk or I'm dizzy. Hard for me to get up and down.
How has Fibro affected your life: Makes me moody and I snap at family members. Sometimes I hurt to much and if we have plans to do something it has to be canceled and it upsets my kids.
What Were Your First Symptoms: body achiness, dizziness, pressure in the head, fatigue, feeling feverish, memory confusion.
Your age at onset of symptoms: 32
How fast was your Rate of Decline: with in a year
What Are Your Current Symptoms: pressure in back of head, dizziness, lower back pain, feeling feverish, achy all over, bottom of feet tingle, burn and memory confusion.
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: 1
Describe the extent of your brain fog: confusion, feel like in a tunnel, pain at base of back of head, pressure in the ears, hard to remember things that I do everyday.
Estimate number of doctors you have seen for Fibro related symptoms: 8
Do your doctors tend to focus on all your Fibro symptoms: I'm not sure
Do your doctors treat your symptoms individually or collectively: collectively
Describe your experience with doctors: They really don't listen.
What remedies or medications have you tried: physical therapy, Lyrica, cymbalta, pain relievers, muscle relaxors, lexapro, xanax.
What makes You feel better: resting and sleeping
What makes you feel worse: excersise and bad weather
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride: I don't drink tap water, mine is filtered and I am not around pesticides
Have you made dietary changes to avoid any other neutrotoxins: I watch what I eat and try not to eat to much sugar, carbs or calories
Have you tried any thyroid specific treatments: No
Your theories or comments: When the weather changes, I don't get enough sleep, excersise to much, drink or be in a cold place for to long I ache.
Are we missing any important questions:

 

09/06/2008
First Name: J
Age: 47
Male or Female: Female
City: S.W.
State/Province: USA
Country: USA
How long have you lived there: 30 years
Where were you born: Parkersburg, WV
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: Yes
What is Your Line of Work: Staffing Coordinator in Home Health Agency
How has Fibro affected your ability to work: If it wasn't for pain medications, I wouldn't still be able to work.
How has Fibro affected your life: In good ways and bad. I've learned what's really important in my life. Learned to say no to things, learned not to push myself way beyond the point of physical endurance which has been my way all my life as a single parent who worked two jobs for many years. Learned to keep the stress down in my life as much as possible. In the negative, I hurt somewhere to some extent every single day and have for the last ten years, I've learned to manage it pretty well though I guess.
What Were Your First Symptoms: Multiple traveling joint/body pain.When it first started, I had knee pain but had done nothing to my knee, I went to the dr., they could find nothing. Over the course of the next 6 months, pain traveled through every joint of my body and I mean every one from fingers to toes, to elbows, I had "tennis elbow" for 4 months (nothing done to get it) then it just disappeared one day as quickly as it had appeared, one day my foot started hurting, like the bones in my foot, no accident or anything to cause it, by the 2nd or 3rd day I was limping and could barely walk. I had quit going to the dr. for things by then because they would just "happen", "appear" then disappear as quickly as they had appeared, sometimes they'd last for a few days, a week, sometimes months. Thankfully that portion is over!! It was like it had to travel through very joint in my body.
Your age at onset of symptoms: 37
How fast was your Rate of Decline: Once it all started it was pretty quickly downhill fast.
What Are Your Current Symptoms: Pain! stiffness, tinnitus, muscle twitches/jumping in various parts of my body, tingling, burning, aching. Increased allergies, sensitivity to chemicals. Pain! fatigue, "fibro fog, oh, did I say pain?
Number of years since you developed symptoms of fibromyalgia: 10
Do Your Symptoms Include Brain Fog: Yes
Number of years since you developed the brain fog: 10
Describe the extent of your brain fog: Moderate to mild but it seems to be getting a little worse. I had my ovaries removed at the age of 36 and DO take adquate, effective ovarian hormone supplementation. Without it I think I'd be a lot worse in many respects.
Estimate number of doctors you have seen for Fibro related symptoms: 2
Do your doctors tend to focus on all your Fibro symptoms: No, not really, unless I am really strongly verbal about them. Thankfully, my primary care doc is pretty good about trusting my intuition about what is wrong so I haven't ever tried to go to many other docs. Gawd help me if something happens to her.
Do your doctors treat your symptoms individually or collectively: Individually
Describe your experience with doctors: I have had the same primary care doctor for several years. Thankfully she believes in me and trusts my intuition.
What remedies or medications have you tried: In the beginning I tried anything and everything, over the years I have tried: Noni Juice, Distilled water, massage, Gluten Free, various herbs, supplements, Ambien, Flexeril, and finally narcotic pain reliever. I did try T3 supplementation once which actually helped and is the only thing besides a narcotic pain med that almost made me pain free but I didn't have "strong" lab tests to indicate full blown thyroid disorder so my doctor wouldn't back up prescribing the T3 for me.
What makes You feel better: Not letting myself get to physically, nutritionally, emotionally or hormonally stressed. Muscle relaxers, pain med, hot shower and taking good care of me.
What makes you feel worse: Emotional stress is one of the worst. Strong emotional upset can leave me feeling like I've been hit by a baseball bat within an hour. Overstressing myself physically, not eating well, not taking my hormone supplementation consistently, hot humid weather, rain, sleeping too long, being in one position for too long.
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: I try to eat more natural foods which is expensive to do. Do work at limiting chemicals in foods as much as possible.
Have you tried any thyroid specific treatments: Yes, tried T3 therapy once and it helped a great deal but couldn't find a doctor to work with me on it and had limited financial resources to go doctor shopping.
Your theories or comments: I think fibromyalgia is a neurotransmitter/brain chemical malfunction, until we get to the bottom of what that is? Millions!! of people have it yet it is disbelieved by doctors? Why? They now say 90% of fibro sufferers are women. Why? Could it be the relationship between sex hormones and neurotransmitters and brain chemicals? I'd lay good money on it.
Are we missing any important questions: Yes! How about: Did you have any major surgery or a car accident or major event that might have been similar before the onset of Fibromyalgia?

 

09/04/2008
First Name: Suzie
Age: 53
Male or Female: Female
City: Pretoria
State/Province: South Africa
Country: South Africa
How long have you lived there: 53
Where were you born: South Africa
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: Director
How has Fibro affected your ability to work: Exhaustion
How has Fibro affected your life: Only have energy to cope with working.
What Were Your First Symptoms: Muscle Pain and exhaustion
Your age at onset of symptoms: 28
How fast was your Rate of Decline: Slow but constant
What Are Your Current Symptoms: Muscle Pain (severe) Bone Pain (arthritis) (reasonably severe) Exhaustion Irritation Insomia (severe) Irritable legs (severe) Irritable Bowel Syndrome (constant but better when on a strictly no wheat/gluten diet) and lately panic attacks when anybody expects ANYTHING of me!
Number of years since you developed symptoms of fibromyalgia: 24 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: 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: Have a very good specialist who specialises in Fibromyalgia and Arthritis.
What remedies or medications have you tried: Lately mostly cortisone injections into the trigger points. In the past have been put on plasmoquin and Doxycyl.
What makes You feel better: Cortisone but there are side effects. Trepilene at night Ivedal 1/2 at night and another 1/2 if still not sleeping by 2am. Cipralex in the mornings
What makes you feel worse:
Have you tried avoiding fluoride in your diet: No
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: Don't have any information on this except that I try to avoid gluten (which is difficult)
Have you tried any thyroid specific treatments: Iltroxin
Your theories or comments:
Are we missing any important questions:

 

09/03/2008
First Name: Lori
Age: 37
Male or Female: female
City: sydney
State/Province: australia
Country: australia
How long have you lived there: 35 years
Where were you born: argentina
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: psychotherapy
How has Fibro affected your ability to work 2004 to 2006 I was unable to work and incapacitated. brain fog, no sleep and pain have prevented my ability to function.
How has Fibro affected your life Fibro has affected my relationships, worklife and enjoyment of life. I feel like the pause button was on for 2 years. During this time I had to file for bankruptcy as I fell behind with all my bills and was unable to work.
What Were Your First Symptoms In 2003 I had 2 car accidents and whiplash, shortly after this I had terrible fatigue and body pain. This is where all the symptoms started.
Your age at onset of symptoms 32
How fast was your Rate of Decline: Very quick - within 6 months I had all the symptoms and my quality of life was declining.
What Are Your Current Symptoms: I have to be careful not to get stressed & overworked as I then revert back to mild symptoms.
Number of years since you developed symptoms of fibromyalgia: 5
Do Your Symptoms Include Brain Fog: yes
Number of years since you developed the brain fog: 5yrs
Describe the extent of your brain fog: I would consistently forget the topic of conversation where I would forget what I had said 31 minute before. I couldn't follow the plot of a movie.
Estimate number of doctors you have seen for Fibro related symptoms: 6
Do your doctors tend to focus on all your Fibro symptoms: One doctor told me I was imagining it all and I should think positive. Others didn't believe me. One who was an environmental doctor tested my blood and urine and found that I had an overactive immune system attacking itself and extremely low magnesium. However he didn't have an answer for me about what I should do. Eventually after about 18 months I started taking magnesium supplements when I came out of the brain fog a little and was able to think straighter.
Do your doctors treat your symptoms individually or collectively:
Describe your experience with doctors: I was sent to a Psychiatrist by one doctor and the Psychiatrist said he didn't believe me when I told him all my symptoms!!!
What remedies or medications have you tried: amino acids, guafenesin, 5htp, ozonated water, prozac, zoloft, olive leaf extract, colloidal silver...
What makes You feel better: olive leaf extract, st johns wort, 5htp and magnesium seemed to help a lot.
What makes you feel worse: mangosteen made me psychotic
Have you tried avoiding fluoride in your diet: yes
If so, which sources of fluoride: tap water and toothpaste
Have you made dietary changes to avoid any other neutrotoxins: Steered clear of dairy and much of the pain was alleviated.
Have you tried any thyroid specific treatments: no
Your theories or comments: It's still a mass of confusion looking back at all the symptoms and fluctuations of symptoms.
Are we missing any important questions: Yes, I feel you should ask about viral infections as I caught herpes also just before the car accidents and it seemed to be a factor.

 

09/03/2008
First Name: Margaret
Age: 56
Male or Female: Female
City: Sydney
State/Province: Australia
Country: Australia
How long have you lived there: All my life
Where were you born: Australia
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 Broker
How has Fibro affected your ability to work Makes me very tired and affects my capacity to think clearly and quickly.
How has Fibro affected your life I am unable to have a very late night as this flares up my fibromyalgia. Stress also aggravates the symptoms. When Fibromyalgia has flared up also get irritable bowel symptoms and become quite irritable. In turn this affects my family and social life.
What Were Your First Symptoms Have always ached and had very tight muscles. When this first really flared up caused pain in muscles and joints, brain fade, sleep was not restful in any way. Muscle spasms in my back that made lying down difficult.
Your age at onset of symptoms 42 - when flared up and diagnosed
How fast was your Rate of Decline: Overnight this flared up with loss of hormones and massive infection
What Are Your Current Symptoms: Aches and pains, tiredness and wake up not feeling refreshed. I best describe it to other people as having the aches and pains of the flu
Number of years since you developed symptoms of fibromyalgia: 14 years since diagnosed
Do Your Symptoms Include Brain Fog: Yes
Number of years since you developed the brain fog: 14
Describe the extent of your brain fog: I am normally very sharp and intelligent but brain fade slows down my capacity to think. I forget things and feel I am moving around in a fog.
Estimate number of doctors you have seen for Fibro related symptoms: 4
Do your doctors tend to focus on all your Fibro symptoms: Yes
Do your doctors treat your symptoms individually or collectively: Individually
Describe your experience with doctors: Once I was diagnosed I was put on Deptran and anti-inflammatories which worked quite well for me. I researched Firbromyalgia myself and by trial and error worked out what aggravated and what helped this condition.
What remedies or medications have you tried: Regular massage, anti-inflammatories, anti-depressants.
What makes You feel better: Deptran at night, Regular exercise, regular sleep time, avoiding stress and drinks containing caffeine.
What makes you feel worse: Stress is one of the worst offenders. Lack of sleep and not doing any exercise.
Have you tried avoiding fluoride in your diet: No
If so, which sources of fluoride: Tap water, toothpaste
Have you made dietary changes to avoid any other neutrotoxins: No
Have you tried any thyroid specific treatments: No
Your theories or comments: I realised pretty quickly that I would have to be the one to help myself the most. It took a few years of trial and error to find out what works for me. I find regular exercise particularly muscle exercises are like a magical potion. You have to initially work through the pain barrier but working out really helps me more than anything. While doing regular exercise I don't have to take pain killers. A late night also causes problems - not that night but the next night I will have a night where I wake up aching all over, tired and with brain fog. Healthy eating also helps with my irritable bowel symptoms. Deptran at night also works really well for me. At one point I was feeling so good that I took myself off them and got the Fibromyalgia aches worse than ever.
Are we missing any important questions:

 

09/01/2008
First Name: Ananda
Age: 28
Male or Female: female
City: Christchurch
State/Province: New Zealand
Country: New Zealand
How long have you lived there: 10 month
Where were you born: Germany
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 assistant
How has Fibro affected your ability to work feeling tired , lack of energy, not enthusiastic,
How has Fibro affected your life made me more grave and careful about what i am doing and eating.
What Were Your First Symptoms Pain in my legs, pain in my whole body, in the joints and in the muscles, in my jaw especially, a very strange headache which seemed to be only on the surface of the head combined with a very stiff neck and neck pain.
Your age at onset of symptoms 27
How fast was your Rate of Decline:
What Are Your Current Symptoms: almost none
Number of years since you developed symptoms of fibromyalgia: 1
Do Your Symptoms Include Brain Fog: no
Number of years since you developed the brain fog:
Describe the extent of your brain fog:
Estimate number of doctors you have seen for Fibro related symptoms: 3
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: conventional doctors just said its the flu or wanted to treat it with steroids, my traditional chinese medicine doctor was onto it and treated me with chinese herbs, change of diet and acupuncture, she said i had too much dampness in my body caused by too much sugar and refined foodstuff.
What remedies or medications have you tried: change of diet, chinese herbs,
What makes You feel better: YOGA EVERY DAY, get the energy flowing in the body in a non exhausting way, walking, eating wholefood, (Paul Pitchford> healing with wholefoods -very good book on diet)
What makes you feel worse: brown and white sugar, any other sugars if too much, processed food, white flour, refined foods,
Have you tried avoiding fluoride in your diet: yes
If so, which sources of fluoride: drugs, pesticides
Have you made dietary changes to avoid any other neutrotoxins: yes, eating organic food
Have you tried any thyroid specific treatments: no
Your theories or comments: it has to do with diet, the air pressure can make it worth, there might be also a connection to the intake of antibiotics in my past. there might be also a link to too much acidity or candida in the body. In any case its very important to get the chi moving in the body, yoga is an excellent way and chinese herbs support as well.
Are we missing any important questions:

 

 

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