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Fibromyalgia Questionnaire & Results

Latest Update: 11/19/2009 

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42 QUESTIONNAIRE COMPLETED DATA FORMS FOR February 2009

02/27/2009
First Name: mohamed
Age:
Male or Female: male
City: alex
State/Province: egypt
Country: egypt
How long have you lived there: 44
Where were you born: alex
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: banking
How has Fibro affected your ability to work: it affects a little
How has Fibro affected your life: no
What were your first symptoms: 7 years
Your age at onset of symptoms: 37
How fast was your rate of decline: slow
What are your current symptoms: i cant have a complete controll on pen while writting
Number of years since you developed symptoms of fibromyalgia: 7
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: 5
Do your doctors tend to focus on all your Fibro symptoms: yes
Do your doctors treat your symptoms individually or collectively: collectively
Describe your experience with doctors: long
What remedies or medications have you tried:
What makes you feel better:
What makes you feel worse:
Have you tried avoiding fluoride in your diet:
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:

 

02/27/2009
First Name: dorothy
Age: 67
Male or Female: female
City: qld,
State/Province: gold coast
Country: ausrtalia
How long have you lived there: 10 yrs
Where were you born: nz.
Is this the first time you have taken our questionnaire:
If not, why are you returning:
Are you still working:
What is Your Line of Work:
How has Fibro affected your ability to work: yes.
How has Fibro affected your life: less energy and movement
What were your first symptoms: lately
Your age at onset of symptoms:
How fast was your rate of decline:
What are your current symptoms: pain in back neck wrists.
Number of years since you developed symptoms of fibromyalgia: 3
Do your symptoms include brain fog:
Number of years since you developed the brain fog:
Describe the extent of your brain fog:
Estimate number of doctors you have seen for Fibro related symptoms: 2
Do your doctors tend to focus on all your Fibro symptoms: not really
Do your doctors treat your symptoms individually or collectively: indiv.
Describe your experience with doctors: okay
What remedies or medications have you tried: pain killers and anti flamatory
What makes you feel better: pain killers and anti flamatory
What makes you feel worse: taking nothing
Have you tried avoiding fluoride in your diet: yes
If so, which sources of fluoride: tapwater.
Have you made dietary changes to avoid any other neutrotoxins: sort of
Have you tried any thyroid specific treatments: no
Your theories or comments:
Are we missing any important questions: no

 

02/26/2009
First Name: Tiina
Age: 45
Male or Female: Female
City: Lahti
State/Province: Finland
Country: Finland
How long have you lived there: 28 yrs
Where were you born: Great Falls, 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: I work as a teaching assistant in a bilingual school. I used to work in a bank..but I cannot do repetitive work at all or any kind of lifting or something that requires me to be in one place any length of time.
How has Fibro affected your ability to work: Greatly. I cannot concentrate very well and I am getting more sensitive all the time. Noise is a problem with me now and I work with grade school kids! I get irritated because of my constant pain and very frustrated. I cannot do things I want to do and others do not seem to understand why I cannot do the simplest of things.
How has Fibro affected your life: I am divorced now, my illness caused me to be so limited in what I could do and I had a hubby who did not understand at all. I am not able to clean like I want..exercise or do daily activities..this is very frustrating.
What were your first symptoms: I honestly cannot say what they were. Maybe the joint pain.
Your age at onset of symptoms: about 24
How fast was your rate of decline: It hit me hard and I think it is gradually getting worse
What are your current symptoms: Irritable bowel, tender spots that hurt ALL the time, eyesight problems (fuzziness, bright spot flashes in left eye at lower left corner) migraines more often, hearing is sensitive, exhaustion, poor concentration, memory problems, skin itching after showers, pain meds do not help
Number of years since you developed symptoms of fibromyalgia: about 20 some years ago
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: I will guess about 15 maybe
Describe the extent of your brain fog: I forget names at times..cannot concentrate or stay focused. I am exhausted all the time. My mind is like a monkey cage at times..there is so much going on and I cannot focus on one thing at all. I forget appointments..forget to take my medicine..sometimes I just sit and am spaced out. I totally forget what has been said to me..it is like hearing it for the first time. I can sleep for hours and fall asleep at any time of the day. I lose my train of thought, I read something and then forget it right away..no recollection at all!!
Estimate number of doctors you have seen for Fibro related symptoms: 1 so far
Do your doctors tend to focus on all your Fibro symptoms: no
Do your doctors treat your symptoms individually or collectively: One dr. has just now started looking at FM..my back problems have been my main issue and here FM is an illness that has not been recognized properly.
Describe your experience with doctors: FRUSTRATING..they think I am making it up I guess.
What remedies or medications have you tried: My back has been treated with so many medications and nothing works. I will list some and probably forget many. Motifene Dual, Tramal, Panadol/Burana 1000mg, cortisone shots, there are more but I can't remember them!! I stopped taking all except Motifene Dual for my back..it helps at times. I have tried Lymph massage and had a colon cleansing treatment.
What makes you feel better: warm weather..I wonder what it feels like to be without pain!!
What makes you feel worse: cold weather, being in one place too long..pain
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: no
Have you tried any thyroid specific treatments: no
Your theories or comments: If I can be of any help please let me know..i am willing to try anything at this point..my life has been ruined by this and I am only 45!!
Are we missing any important questions: this limits me to no end..I am sure there are more questions that would help..I have had accidents with broken bones that may have caused my symptoms to get worse radically plus my divorce was very hard on me..I am sure all this affects me.

 

02/25/2009
First Name: Carla
Age: Dixon
Male or Female: Female
City: Ravensdale
State/Province: WA
Country: USA
How long have you lived there: 3yrs
Where were you born: Seattle WA
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: No
What is Your Line of Work: Warehouse
How has Fibro affected your ability to work: Never knowing how you will feel one day to the next puts a definate cramp in your work style.
How has Fibro affected your life: I feel like I don't even know what kind of a person I would be if I didn't have this. I think I would be much more easy going and less cranky.
What were your first symptoms: Getting out of bed in the morning and laying down on the couch. Aches and pains in the "typical" fibro areas.
Your age at onset of symptoms: 25
How fast was your rate of decline: Was in full decline when diagnosed
What are your current symptoms: Intermittent muscle aches and pains lasting for days - like the flu. Vision foggy at times, brain fog. Typical symptoms.
Number of years since you developed symptoms of fibromyalgia: 23
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: can't remember...no pun intended.
Describe the extent of your brain fog: Some days it is pretty bad, others not so much. King of like a dizzy, forgetful, hangover.
Estimate number of doctors you have seen for Fibro related symptoms: 4
Do your doctors tend to focus on all your Fibro symptoms: No. Gave up on even mentioning it to doctors now - not willing to take all of the guinea pig drugs.
Do your doctors treat your symptoms individually or collectively: in the past - individually
Describe your experience with doctors: If they can't cure you - it must be in your mind - or not that bad - or they refer you on to the next specialist.
What remedies or medications have you tried: Vitamins - D / C / E / Calcium, Magnesium, DIM, Sun Therapy. Apple Cidar Vinegar,
What makes you feel better: The sun - definately the sun. I think there is a real vitamin D connection to the pain and depression. Vitamin D does not seem to do the trick - just being in the sun.
What makes you feel worse: I do not take pharmacy "drugs" - I know that the side effects would just mess me up even more.
Have you tried avoiding fluoride in your diet: No - not yet - plan on it though
If so, which sources of fluoride: tap water
Have you made dietary changes to avoid any other neutrotoxins: no
Have you tried any thyroid specific treatments: no
Your theories or comments: I think trying to not over do things on the day you feel good, and getting enough sunlight to assimilate vitamin D are pretty key things in dealing with Fibro.
Are we missing any important questions: Have you any relatives with Fibro? I would like to know how heraditary this is - as my mom das also diagnosed a few years after I was. Thanks for taking the time to read this! Carla :)

 

02/25/2009
First Name: Jill
Age: 32
Male or Female: female
City: Summerside
State/Province: PEI
Country: Canada
How long have you lived there: 32 years
Where were you born: Summerside
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: no
How has Fibro affected your life: no sleep, neck/back in constant pain
What were your first symptoms: sore bones
Your age at onset of symptoms: unknown
How fast was your rate of decline: hurts more as time goes on
What are your current symptoms: see above
Number of years since you developed symptoms of fibromyalgia: unknown
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: 1
Do your doctors tend to focus on all your Fibro symptoms: no
Do your doctors treat your symptoms individually or collectively: individually
Describe your experience with doctors: not enough information
What remedies or medications have you tried: massage therapy, naturopathy
What makes you feel better: hot baths, massage
What makes you feel worse: first thing in the morning
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:

 

02/25/2009
First Name: Anna
Age: 49
Male or Female: female
City: victoria
State/Province: bc
Country: canada
How long have you lived there: 31 years
Where were you born: port alberni
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: yes
What is Your Line of Work: secretary
How has Fibro affected your ability to work: fatigue, pain & brain fog create many difficulties mainly forgetfulness, needing to rest at the most inoportune times, and missing days from work
How has Fibro affected your life: I spend much more time at home now, often needing the help of my husband and daughter to make meals, clean the house, etc, sometime even need assistance to walk or get up out of a chair
What were your first symptoms: pain & fatigue
Your age at onset of symptoms: 33 after daughter was born
How fast was your rate of decline: slow, hit hardest 4 years ago
What are your current symptoms: pain, fatigue, brain fog, hives,
Number of years since you developed symptoms of fibromyalgia: diagnosed 4 years ago, probably have had the fatigue since i was a teenager
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 6 year
Describe the extent of your brain fog: on a bad day i can't dial a telephone, because i get the numbers all mixed up
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: individually
Describe your experience with doctors: the last 2 have been somewhat helpful, the rest useless, one told me to "get off my fat ass and figure it our yourself" (I wasn't overweight at the time)
What remedies or medications have you tried: amitryptilene (sp?), gabapentin, tylenol, advil, robaxicet (sp?),
What makes you feel better: gabapentin helps some
What makes you feel worse: cold weather, large crowds, doing too much at work
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 organic produce
Have you tried any thyroid specific treatments: i take synthroid, and have used gugalip, total thyroid, and core thyroid supplements
Your theories or comments: i wonder if fm has some viral component to it that we're missing....
Are we missing any important questions:

 

02/24/2009
First Name: Justina
Age: 45
Male or Female: Female
City: Boothbay
State/Province: maine usa
Country: USA
How long have you lived there: 33 Years
Where were you born: England
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: yes
What is Your Line of Work: police /emergency dispatcher
How has Fibro affected your ability to work: no
How has Fibro affected your life: It has affected every part of my life. Physical activity, hobbies, housekeeping, intimate relations
What were your first symptoms: feeling like i'd worked out too hard - joint aches
Your age at onset of symptoms: 42-43
How fast was your rate of decline: rapid
What are your current symptoms: rather minor - i take cymbalta and it's truly made a world of difference
Number of years since you developed symptoms of fibromyalgia: three years
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: three
Describe the extent of your brain fog: couldn't speak correctly, using wrong words,saying words with the wrong starting letter - had a ct scan on my brain
Estimate number of doctors you have seen for Fibro related symptoms: three
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: saw a rhumetologist that dismissed my fibromyalgia
What remedies or medications have you tried: cymbalta
What makes you feel better: cymbalta
What makes you feel worse: not taking it
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride: n/a
Have you made dietary changes to avoid any other neutrotoxins: no
Have you tried any thyroid specific treatments: am being treated for hyperactive thyroid
Your theories or comments: After six months of trying to figure out what was wrong with me - I was the one(not my doctor) that dug up Fybromyalgia as a condition that had so many of my symptoms - before that I would just cry a lot as all tests showed I was ok. But I knew I wasnt. I just wish that Fibromyalgia would be seen as a possibilty when everthing else is turning up nothing. My only child, my daughter graduated from high school in 2007 and I hardly got any pictures as I knew I couldn't walk to the front of the gym and go down on one knee to take pictures like the other moms were doing. I could barely move. I'd been waiting for this day for 18 years and there it went. I want Fibromyalgia to be seen as something other than some phantom imaginary disorder, it can be so devastating. i'm so thankful the cymbalta is working for me as my insurance refused me lyrica
Are we missing any important questions:

 

02/24/2009
First Name: Heather
Age: 35
Male or Female: Female
City: Aurora
State/Province: CO
Country: USA
How long have you lived there: 2 Years
Where were you born: Tulsa, Oklahoma
Is this the first time you have taken our questionnaire: Yes
If not, why are you returning:
Are you still working: Yes
What is Your Line of Work: Financial Industry
How has Fibro affected your ability to work: Some days I hurt so much I can not concentrate, I feel like I am constantly moving trying to feel better. I can think clearly some days either.
How has Fibro affected your life: I have had some serious bouts of depression and just too tired to do anything at all. It takes everything I have to go to the grocery store much less anything else.
What were your first symptoms: Fatigue and muscle/joint pain.
Your age at onset of symptoms: 34
How fast was your rate of decline: Very fast.
What are your current symptoms: Depression, fatigue, muscle/joint pain all over. I am having muscles spasms--not sure why? Neither is doctor--have done multiple blood test to figure this out.
Number of years since you developed symptoms of fibromyalgia: One
Do your symptoms include brain fog: Yes
Number of years since you developed the brain fog: 1
Describe the extent of your brain fog: Some Days it isnt bad other days I feel like I am on the edge of crazy.
Estimate number of doctors you have seen for Fibro related symptoms: 5
Do your doctors tend to focus on all your Fibro symptoms: The one doctor I have now focuses on the symptoms now that I have a specialist.
Do your doctors treat your symptoms individually or collectively: My doctor trys to look at everything individually first because she doesn't want to blame everything on the fibromyalgia.
Describe your experience with doctors: Most just told me it was stress and my car accidents that caused the problems. Then one blood test for a hurt finger brought me to a specialist that finally understood and figured out what was going on with me.
What remedies or medications have you tried: Cymbalta, Prozac, Amitryipiline, tramdol, vitamin d
What makes you feel better: Sleeping when I am tired and not over doing it when I feel good. Getting plenty of sleep at night.
What makes you feel worse: Weather changes, not sleeping well, and 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: I have gone to some more organic foods but haven't switched entirely due to cost.
Have you tried any thyroid specific treatments: No
Your theories or comments: I wish there was a more natural way to keep the pain at bay instead of pills--I hate pills.
Are we missing any important questions: No

 

02/23/2009
First Name: Sandi
Age: 60
Male or Female: F
City: York
State/Province: PA
Country: USA
How long have you lived there: 40 yrs
Where were you born: West Chester PA
Is this the first time you have taken our questionnaire: Y
If not, why are you returning:
Are you still working: N
What is Your Line of Work: Retired Teacher
How has Fibro affected your ability to work: Off and on. When I feel well I always seem to overdo...then pay for it the next few days
How has Fibro affected your life: I am a very active outdoor person. It has limited me on and off as to length and duration of my stamina. I retired early from teaching due to fibromyalgia and effects of Lyme Disease.
What were your first symptoms: Following a brief illness of what seemed like flu, I became very achy, and tired. I did notice a strange rash that only lasted a day during the illness. After being tested by a rhumetologist, I tested positive for exposure to Fifth's disease. Otherwise he found no other causes for the pain, etc.
Your age at onset of symptoms: 44
How fast was your rate of decline: I became sore and fatigued and it remained at the initial level. Pain at all trigger points.
What are your current symptoms: Short term memory loss. Brain fog, but not all the time. Pain in lower back, both inner knees, joint pain in elbow and constant knots in neck and mid back along spine.
Number of years since you developed symptoms of fibromyalgia: 16
Do your symptoms include brain fog: some
Number of years since you developed the brain fog: can't remember specifically
Describe the extent of your brain fog: At one point, I bought a small voice recorder to note things of importance so I wouldn't forget where I was going in the car, etc.
Estimate number of doctors you have seen for Fibro related symptoms: 6
Do your doctors tend to focus on all your Fibro symptoms: When it started, fibromyalgia was not brought up all that much. So each problem was addressed individually
Do your doctors treat your symptoms individually or collectively: depends on the dr
Describe your experience with doctors: After literally having them say, well, I guess you have fibromyalgia, you don't test positive for anything else.
What remedies or medications have you tried: Lyrica...can't take..amytriptaline...good for sleeping. Am currently on Gabepentin. Have had more energy than I can remember in a very long time. Take extra Vit D, magnesium. limit dairy and white foods.
What makes you feel better: Massages. Corrections at the chiropractor. Summertime over wintertime.
What makes you feel worse: cold weather. damp days
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: I eat very carefully. When I had Lyme 5 years ago, I got a systemic candida infection from a year of antibiotics. I removed dairy, artificial sweeteners, tomatoes,white foods and white potatoes, white rice and sugar. I honestly did not ache for the first time in many years. But after dropping almost 20 lbs. I became too thin and not able to stick to the diet as rigidly. I think that dairy effect me the most.
Have you tried any thyroid specific treatments: No but my dr and I are about to look into it.
Your theories or comments: I do believe that some vitamins will help the pain..Vit D, Magnesium. Perhaps these levels could be checked in the blood more regularly, as well as thyroid.
Are we missing any important questions: Perhaps any that would link other diseases/conditions to the fibro. Such as lyme, chronic fatigue, arthritis etc. Even menopause! This age thing didn't come with a guide book so I am still not clear on how much pain to define as age!

 

02/21/2009
First Name: Alicia
Age: 49
Male or Female: Female
City: San Antonio
State/Province: Texas
Country: USA
How long have you lived there: 49+ years
Where were you born: San Antonio, 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: Elementary School Secretary Bookkeeper
How has Fibro affected your ability to work: I was and am in some kind of constant pain. I struggle daily to keep going.
How has Fibro affected your life: I don't go out socially or for very long periods of time. I don't drive nearly as far or for as long as I did before I got sick.
What were your first symptoms: Lack of energy no strength migraine headaches and extreme pain. I had pain in all 18 pressure points.
Your age at onset of symptoms: 46
How fast was your rate of decline: Extreme, it seemed like immediately after a "nasty" cold for which I was prescribed cough medicine.
What are your current symptoms: Well I have developed several other ailments over the last 3 years, but pain remains a constant.
Number of years since you developed symptoms of fibromyalgia: Three
Do your symptoms include brain fog: Not as much as before.
Number of years since you developed the brain fog: Three
Describe the extent of your brain fog: From one moment to the next could not remember conversations or even simply keep a train of thought. I don't even know if that sounds right.
Estimate number of doctors you have seen for Fibro related symptoms: 12-15
Do your doctors tend to focus on all your Fibro symptoms: No
Do your doctors treat your symptoms individually or collectively: Individually
Describe your experience with doctors: Not good at all until recently.
What remedies or medications have you tried: Painkillers seizure meds antidepressants sleep meds Lyrica (caused severe swelling and other debilitating side effects) muscle relaxants topical pain relievers NSAIDS...
What makes you feel better: Advil and supplements along with hormone therapy and Armour Thyroid medication.
What makes you feel worse: Not getting proper rest, nutrition and my meds.
Have you tried avoiding fluoride in your diet: Yes
If so, which sources of fluoride: Toothpaste or other known sources.
Have you made dietary changes to avoid any other neutrotoxins: Not to my knowledge.
Have you tried any thyroid specific treatments: Armour Thyroid
Your theories or comments: Check allergies and especially hormone levels.
Are we missing any important questions: No

 

02/21/2009
First Name: HELEN
Age: 34
Male or Female: FEMALE
City: INNISFAIL
State/Province: QUEENSLAND
Country: AUSTRALIA
How long have you lived there: 34 YEARS
Where were you born: MELBOURNE
Is this the first time you have taken our questionnaire: YES
If not, why are you returning: N/A
Are you still working: TRYING TO DO PART TIME
What is Your Line of Work: TEACHERS' S AIDE AND DO BOOK WORK FOR OUR LAWN CARE BUSINESS
How has Fibro affected your ability to work: YES
How has Fibro affected your life: YES
What were your first symptoms: TIRED ALL THE TIME AND ACHING MUSCLES
Your age at onset of symptoms: 34
How fast was your rate of decline: PRETTY MUCH STRAIGHT AWAY
What are your current symptoms: TIRED, ACHING MUSCLES, HEADACHES, IRRIATABLE SOMETIMES FORGETFUL, NEED CHOCOLATE, PEE ALOT ESPECIALLY AT NIGHT
Number of years since you developed symptoms of fibromyalgia: 2 MONTHS
Do your symptoms include brain fog: YES SOMETIMES
Number of years since you developed the brain fog: 2 MONTHS
Describe the extent of your brain fog: VERY MILD SOMETIMES FORGET IMPORTANT ISSUES
Estimate number of doctors you have seen for Fibro related symptoms: 3
Do your doctors tend to focus on all your Fibro symptoms: THE 3RD DOCTOR HAS HE HAS BEEN REALLY GREAT
Do your doctors treat your symptoms individually or collectively: INDIVIDUALLY
Describe your experience with doctors: GREAT
What remedies or medications have you tried: CURRENTLY ON DEPTRAN ALSO HAVE CO10 FISH OIL TABLETS AND MAGNESIUM POWDER AND DAIRY FREE INNER HEALTH PLUS
What makes you feel better: REST MASSAGE AND SHOWERS
What makes you feel worse: TRYING TO DO TO MUCH ON MY GOOD DAYS I REALLY PAY FOR IT THE NEXT DAY
Have you tried avoiding fluoride in your diet: YES
If so, which sources of fluoride: TOOTHPASTE AND TAP WATER
Have you made dietary changes to avoid any other neutrotoxins: CUT OUT DAIRY
Have you tried any thyroid specific treatments: NO
Your theories or comments: N/A
Are we missing any important questions: N/A

 

02/19/2009
First Name: susan
Age: 45
Male or Female: female
City: wisbech
State/Province: cambs
Country: uk
How long have you lived there: 8 years
Where were you born: ipswich
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: stiffness of fingers first then feet/ankles
Your age at onset of symptoms: 42
How fast was your rate of decline: quite rapid
What are your current symptoms: constant paid all over body particularly knees, hips back neck some areas stabbing pain extreme fatigue, headaches and nausea
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: 18months
Describe the extent of your brain fog: varying general bad memory memory blanks, forgetfulness sometimes totally losing track of what I am doing.
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: very supportive
What remedies or medications have you tried: tramadol, diclofenac (arthritic50) amatriptiline
What makes you feel better: tramadol and diclofenac couldnt do without.
What makes you feel worse: amatriptiline made me very tearful and depressed
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: only caffienefree tea/coffee no fizzy drinks exept slimline tonic water
Have you tried any thyroid specific treatments: no
Your theories or comments: am now about to try gabapentin as my symtpoms have become more severe
Are we missing any important questions: only if your normal day to day life is impaired, I need care and have to use a wheel chair for any distances ! It is very life changing !

 

02/18/2009
First Name: Bethany
Age: 17
Male or Female: Female
City: Fort Atkinson
State/Province: Wisconsin
Country: USA
How long have you lived there: 5.5 years
Where were you born: Oak Creek, Wisconsin
Is this the first time you have taken our questionnaire: Yes
If not, why are you returning:
Are you still working: No
What is Your Line of Work: I'm a student.
How has Fibro affected your ability to work: I'm behind in school because when my Fibro flares, I can't do much of anything
How has Fibro affected your life: It has impacted my life very negatively.
What were your first symptoms: Pain, followed by severe fatigue.
Your age at onset of symptoms: 13
How fast was your rate of decline: About 1.5-2 years.
What are your current symptoms: Pain and fatigue.
Number of years since you developed symptoms of fibromyalgia: 4.5ish
Do your symptoms include brain fog: Yes
Number of years since you developed the brain fog: 3ish
Describe the extent of your brain fog: Very bad. To the point I can't do school because my brain is so not there.
Estimate number of doctors you have seen for Fibro related symptoms: 10
Do your doctors tend to focus on all your Fibro symptoms: No
Do your doctors treat your symptoms individually or collectively: Collectively.
Describe your experience with doctors: My psychiatrist has helped me the most. He works with a lot of Fibro patients, and in July 08 he finally found some meds that help me.
What remedies or medications have you tried: Lots of remedies (MSM, high doses of Vitamin C, etc.), lots of meds (Lyrica, Lamictal, etc.) The two meds I'm on for my Fibro have helped me a LOT. Gabapentin for the pain, and Adderall for the fatigue. Adderall is incredible.
What makes you feel better: Adderall, exercise, stretching, massage.
What makes you feel worse: Not exercising, stress, getting my period.
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 highly recommend Adderall for Fibro patients dealing with horrible fatigue. I noticed a drastic change the second day I started taking it!
Are we missing any important questions: No.

 

02/18/2009
First Name: Sandy
Age: 51
Male or Female: female
City: Hants County
State/Province: Nova Scotia
Country: Canada
How long have you lived there: 51 years
Where were you born: WindSor, NS
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: hostess for Tim Hortons
How has Fibro affected your ability to work: have alot of pain during the time I am working.can't enjoy my work and can't put into it what I would like to.
How has Fibro affected your life: very much so.extremely tired all the time, don't feel like going out and find it very hard to walk as I am in alot of pain and stiffen up so bad.
What were your first symptoms: joints stiffened, extreme pain in my lower back and legs,extreme fatique
Your age at onset of symptoms:
How fast was your rate of decline:
What are your current symptoms: fatique, extreme pain, stiffness
Number of years since you developed symptoms of fibromyalgia: 6 months ago
Do your symptoms include brain fog: sometimes
Number of years since you developed the brain fog: 6 months
Describe the extent of your brain fog: find it hard to concentrate, don't seem to be with it at all times
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: sometimes
Describe your experience with doctors: my family doctor is great and understands me , my rhumatoid dr was not as helpful and didn't seem to understand the amount of pain I am in.
What remedies or medications have you tried: triatripaline
What makes you feel better: nothing that I can say for sure
What makes you feel worse: when I work
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: someno
Have you tried any thyroid specific treatments:
Your theories or comments: I am getting so very discouraged with the pain and the extreme fatique I have, it really has affected my social life
Are we missing any important questions:

 

02/18/2009
First Name: Laurel
Age: 21
Male or Female: Female
City: Detroit
State/Province: MI
Country: USA
How long have you lived there: 10 months
Where were you born: Nashville TN
Is this the first time you have taken our questionnaire: Yes
If not, why are you returning:
Are you still working: NO
What is Your Line of Work:
How has Fibro affected your ability to work: I am not longer able to work. Nor find work that will allow flexibility because of the FS
How has Fibro affected your life: I've never been normal, For years was told I was a hypochondriac, now I know much better. That stress makes my FS flare up to severe levels
What were your first symptoms: fatigue, pain, tmj
Your age at onset of symptoms: 14
How fast was your rate of decline: has had many ups and downs.
What are your current symptoms: pain, ibs, fatigue
Number of years since you developed symptoms of fibromyalgia: 7
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: 4
Do your doctors tend to focus on all your Fibro symptoms: first doctors didn't, this latest one did.
Do your doctors treat your symptoms individually or collectively: collectively
Describe your experience with doctors: not as bad as psychiatrists
What remedies or medications have you tried: Lexapro, Ultram, Exersize, Marijuana as needed for symptom relief
What makes you feel better: Sleep, Stretching, Chiropractors, Marijuana
What makes you feel worse: Alcohol, Stress, Cold
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: yes
Have you tried any thyroid specific treatments: not at this point in time
Your theories or comments: Stress triggered, Fighting everyday for some sense of normality.
Are we missing any important questions:

 

02/17/2009
First Name: maureen
Age: 59
Male or Female: female
City: arbroath
State/Province: uk
Country: angus
How long have you lived there: 13years
Where were you born: dundee
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: it make me realy tried and i have lots of pain all over my body
How has Fibro affected your life: i dont go out much i just dont feel like it im aways sore
What were your first symptoms: pain down my left side
Your age at onset of symptoms: about 35
How fast was your rate of decline: quite fast
What are your current symptoms: rinning in my ears sre head a lot of pain
Number of years since you developed symptoms of fibromyalgia: from the age of about 35
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: dont no but a long time ago
Describe the extent of your brain fog: i for get things and feel light headed
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: they say there not much they can do for it
What remedies or medications have you tried: tramadol amitriptyine naproxen
What makes you feel better: i dont no
What makes you feel worse: i dont no
Have you tried avoiding fluoride in your diet:
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: no
Have you tried any thyroid specific treatments: im on levothyroxine fluoxetine
Your theories or comments: i need a lot of help with it
Are we missing any important questions: dont think so

 

02/17/2009
First Name: Lori
Age: 51
Male or Female: F
City: Waterford
State/Province: MI
Country: USA
How long have you lived there: 51 yrs.
Where were you born: USA
Is this the first time you have taken our questionnaire: Yes
If not, why are you returning:
Are you still working: Yes
What is Your Line of Work: Legal Assistant
How has Fibro affected your ability to work: yes
How has Fibro affected your life: only work - too painful and tired to do anything else. Sleep when I arrive home from work.
What were your first symptoms: exhaustion and pain
Your age at onset of symptoms: 38
How fast was your rate of decline: very fast went on medical for 3 months
What are your current symptoms: exhaustion, pain,
Number of years since you developed symptoms of fibromyalgia: 13
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 13
Describe the extent of your brain fog: When I get brain fot, I am done thinking, just need to lie down
Estimate number of doctors you have seen for Fibro related symptoms: 4
Do your doctors tend to focus on all your Fibro symptoms: no.
Do your doctors treat your symptoms individually or collectively: individually
Describe your experience with doctors: at least my pain doctor gives me strong meds that work
What remedies or medications have you tried: all
What makes you feel better: not much
What makes you feel worse: zanax
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: not really
Have you tried any thyroid specific treatments: yes .1 of synthroid
Your theories or comments:
Are we missing any important questions:

 

02/17/2009
First Name: Melissa
Age: 27
Male or Female: Female
City: Wallingford
State/Province: CT
Country: United States
How long have you lived there: 4 months, mostly lived in area of Shelton
Where were you born: Derby, CT, USA
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: yes
What is Your Line of Work: assembly line/manufacturing
How has Fibro affected your ability to work: I dread going to work, and even coming home from it, because I have to try cram so much after work, never get enough done or have enough energy or time, i fret while i'm there about being home, i fret at home about work. It has completely invaded my pride and confidence at being the rare girl to lift things, and do "man's work", I also am an artist in my "free" time, but Fibro has basically depleted the word from my life.
How has Fibro affected your life: I started having digestive problems around 17/18 yr's old, and wasnt thought to have Crohn's, then colitis, then IBS. I had fistulas, hemerroids, surgery for them (ouch!!) and still dont understand. I didn't finish college, I stopped tap dancing, I lost many friends because I am so different and unable to do what we original got along doing that i only have two friends now, after a few years of none at all. My love life was especially difficult because a big part of why people were attracted to me, was gone, and if these people didn't even know me to begin with, then what was there to find out about me??, my past, what i USED to do? Luckily, my boyfriend from my early years in college returned into my life and we are close to being married! It's still hard though, because he's healthy as can be and doesn't quite understand my limitations or only certain ones, not emotional or mental ones. He's trying though. My family thinks I ignore them or am lazy alot of the time. For along time they thought I was just making medical issues up, which only made me feel worse. I was pretty active, not athletic, but i loved nature and going for hikes, walks, canoeing, and such, and that is what i miss the most.
What were your first symptoms: weakness, muscle fatigue, aching, electric bolts of pain, stiffness
Your age at onset of symptoms:
How fast was your rate of decline: very fast
What are your current symptoms: fatigue, stiffness, joint pain/weakness, sharp pain, diarreah, bloating, muscle pain, tenderness. Hurts to stand hurts more to sit. Only kind relief is to lay down on my stomach. Can't hold my own neck up. Back pain is terrible.
Number of years since you developed symptoms of fibromyalgia: 2
Do your symptoms include brain fog: yes, but never realized it was fibro
Number of years since you developed the brain fog: not sure
Describe the extent of your brain fog: too foggy to distinguish
Estimate number of doctors you have seen for Fibro related symptoms: 8
Do your doctors tend to focus on all your Fibro symptoms: no
Do your doctors treat your symptoms individually or collectively: individual
Describe your experience with doctors: frustrating, time consuming, feels like a waste of money sometimes, and that no one cares or understands
What remedies or medications have you tried: Percocet,Vicoden, Lyrica, Celebrex, Ibuprofen, Topomax
What makes you feel better: sleep, barely
What makes you feel worse: everything, especially sitting on a hard chair, or being immobile
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:

 

02/16/2009
First Name: Lisa
Age: 39
Male or Female: female
City: fayetteville
State/Province: nc
Country: usa
How long have you lived there: 4 years
Where were you born: denver, colorado
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: non-profit; peer counseling, speaking, teaching
How has Fibro affected your ability to work: not yet
How has Fibro affected your life: I don't sleep well, I am in pain of some degree everyday.
What were your first symptoms: Tender points around my upper body
Your age at onset of symptoms: 36
How fast was your rate of decline: I am now experiencing more pain...not been diagnoised by a MD only by chiropractor
What are your current symptoms: Sore muscles everyday, sometimes it feels like I have been beat up,swelling, tiredness
Number of years since you developed symptoms of fibromyalgia: approximately three
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 2
Describe the extent of your brain fog: I forget things easliy...words I say backwords
Estimate number of doctors you have seen for Fibro related symptoms: 1
Do your doctors tend to focus on all your Fibro symptoms: not really...under the impression nothing can't be done military doctors to many hoops to jump through
Do your doctors treat your symptoms individually or collectively: I go to the chiropractor for adjustments and heat therapy etc.
Describe your experience with doctors: not much don't know where to start with an md
What remedies or medications have you tried: vitamins, double x by nutrilife, magneisum, potassium, heat
What makes you feel better: the supplements manage the pain but I have increased the amount in the last two weeks
What makes you feel worse: forgetting supplements, overwork and stress, maybe msg only a guess
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: some
Have you tried any thyroid specific treatments: none...I have nodules but thyroid hormones look ok
Your theories or comments:
Are we missing any important questions:

 

02/16/2009
First Name: Nicole
Age: 26
Male or Female: Female
City: Alliston
State/Province: Ontario
Country: Canada
How long have you lived there: 26 years
Where were you born: Barrie Ontario canada
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: Yes
What is Your Line of Work: self employed Interior/ exterior Painter, handy woman.
How has Fibro affected your ability to work: i can't get up to go to work, I am always to tired and sore to get out of bed. I can not work very long hours 4 to 5 hours max or I pay for it the next day with worse aches and pains.
How has Fibro affected your life: It has really slowed me down, I used to be more active with sports and work. It's really affected my sleeping habits and my partners (im restless all night no sleep for her). my diet has suffered, certin foods upset my stomach...
What were your first symptoms: Stiff and tingling joints and limbs, headaches, chronic fatigue
Your age at onset of symptoms: 25
How fast was your rate of decline: pretty fast started around April or May of 2008
What are your current symptoms: Headaches, pains in shoulders, aches in bones all over body, tingling feet and hands, stomach pains and bloating, depresson, unable to concentrate, joints ach as if bane on bone grinding, some joints grack and pop when walking or rolling over in bed
Number of years since you developed symptoms of fibromyalgia: just under one year
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: 1
Do your doctors tend to focus on all your Fibro symptoms: so far he's tried antidepressents to help me sleep, but they didn't work. other than that he hasn't tried much else yet
Do your doctors treat your symptoms individually or collectively: So far individually, he tried to help me sleep
Describe your experience with doctors: Not very positive, after his diagnoses it's like he dosen't know what to do.... i am begining to feel a little lost...
What remedies or medications have you tried: i've tried a perscription anti-depressent to help me sleep. Vitamin D for i'm not sure but my doctor told me to take it.
What makes you feel better: So far nothing that the doctors told me to take. One thing i did try after reading about it on an internet site was a little bit of pot before bed and i slept like a baby and woke up feeling great but only till mid afternoon.
What makes you feel worse: Alot of foods make me feel worse anything prepackaged, high sodium and wheat. Any alcohol in any amount. Some milk products. walking/working in excess
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: I try to eat only rice products and fresh fruits and veggies that are certified organic. This seems to help with my bloating (gas) and other stomach issues
Have you tried any thyroid specific treatments: no
Your theories or comments:
Are we missing any important questions:

 

02/15/2009
First Name: Alison
Age: 28
Male or Female: Female
City: Los Angeles
State/Province: CA
Country: USA
How long have you lived there: 9 years
Where were you born: Massachusetts
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: Editing.
How has Fibro affected your ability to work: Can only work part time.
How has Fibro affected your life: It sucks honestly.
What were your first symptoms: Pain in my legs, when I exercised
Your age at onset of symptoms: 24
How fast was your rate of decline: A couple months till it got as bad as it gets.
What are your current symptoms: Literally every symptom under the fibro umbrella
Number of years since you developed symptoms of fibromyalgia: 4
Do your symptoms include brain fog: Yes
Number of years since you developed the brain fog: 4
Describe the extent of your brain fog: Most common symptom is doing the wrong thing. Throwing trash in the sink, throwing dirty dishes in the trash. Inability to process information.
Estimate number of doctors you have seen for Fibro related symptoms: 6
Do your doctors tend to focus on all your Fibro symptoms: Never.
Do your doctors treat your symptoms individually or collectively: Individually.
Describe your experience with doctors: Cannot do so without using inappropriate words.
What remedies or medications have you tried: Not much actually. Can't afford medication, not that it seems helpful. Dietary changes.
What makes you feel better: Light exercise for 10 minutes every 2 hours.
What makes you feel worse: Exercising for more than 10 minutes.
Have you tried avoiding fluoride in your diet: No
If so, which sources of fluoride: Tap water, Cipro!
Have you made dietary changes to avoid any other neutrotoxins: Just try to eat organic.
Have you tried any thyroid specific treatments: Nope.
Your theories or comments: I had mono, then two kidney infections and was on antibiotics on an off for 5 months. Developed fibro shortly after.
Are we missing any important questions:

 

02/14/2009
First Name: Yvonne
Age: 41
Male or Female: Female
City: Conway
State/Province: AR
Country: USA
How long have you lived there: 41 yrs
Where were you born: Conway, AR
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: Guest services and merchandising
How has Fibro affected your ability to work: Pine, Sleep, Fog
How has Fibro affected your life: Trying to remember things, not being able to do as much around the house as I always have been able to.
What were your first symptoms: pain in legs, back, sleeping,
Your age at onset of symptoms: 34
How fast was your rate of decline:
What are your current symptoms: Fog, sleep, Pain,
Number of years since you developed symptoms of fibromyalgia: 7
Do your symptoms include brain fog: Yes
Number of years since you developed the brain fog: 4
Describe the extent of your brain fog: Forgetful of many things. Keep things written down, esp. appt. with out that I'd be lost.
Estimate number of doctors you have seen for Fibro related symptoms: 3
Do your doctors tend to focus on all your Fibro symptoms: no
Do your doctors treat your symptoms individually or collectively: no
Describe your experience with doctors: bounce around with the first two and then was sent to a pain managment doctor. Have pretty good luck with him.
What remedies or medications have you tried: Lyrica Gabaptin Ultrim, Zenflax
What makes you feel better: Pain pills, tens machine, Cpap
What makes you feel worse: caftine, wheat
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: Yes
Have you tried any thyroid specific treatments: No
Your theories or comments:
Are we missing any important questions: No

 

02/13/2009
First Name: candy
Age: 59
Male or Female: female
City: Anderson
State/Province: Indiana
Country: usa
How long have you lived there: 30 years
Where were you born: muncie indiana
Is this the first time you have taken our questionnaire: yes
If not, why are you returning: didn't go throuth the first time
Are you still working: yes
What is Your Line of Work: die setter for a auto company
How has Fibro affected your ability to work: yes
How has Fibro affected your life: it has made my life a living hell at times.No freinds to speak of. they don't understand.
What were your first symptoms: Pain all over
Your age at onset of symptoms: 29
How fast was your rate of decline: Fast, layed and cryed fr six months. Back in 1979 no one knew anything.
What are your current symptoms: PAIN some good days and some really BAD days
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: 15
Describe the extent of your brain fog: can't remember things every thing seems distant at times.
Estimate number of doctors you have seen for Fibro related symptoms: 8
Do your doctors tend to focus on all your Fibro symptoms: no
Do your doctors treat your symptoms individually or collectively: collectively, but that doesn't say much all they know are drugs.
Describe your experience with doctors: they think I really couldn't HURT all that bad.
What remedies or medications have you tried: nurontin,flexarell,wellbutin,pamelor,effexor,pain pills,
What makes you feel better: sunshine
What makes you feel worse: cold
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: no
Have you tried any thyroid specific treatments: no
Your theories or comments: I don't think drugs are the answer.
Are we missing any important questions: no

 

02/12/2009
First Name: Steve
Age: 37
Male or Female: Male
City: Sydney
State/Province: NSW
Country: Australia
How long have you lived there: 37
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: Yes
What is Your Line of Work: Engineering
How has Fibro affected your ability to work: Yes
How has Fibro affected your life: Yes
What were your first symptoms: Couldn't wear certain types of clothes at a young age
Your age at onset of symptoms: 4
How fast was your rate of decline: Actually improved
What are your current symptoms: Normal firbomyalgia
Number of years since you developed symptoms of fibromyalgia: 33
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: 10
Do your doctors tend to focus on all your Fibro symptoms: No
Do your doctors treat your symptoms individually or collectively: Individually
Describe your experience with doctors: They have no idea
What remedies or medications have you tried: 5-HTP
What makes you feel better: Supplements work surprisingly well
What makes you feel worse: Exercise
Have you tried avoiding fluoride in your diet: No
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: No
Have you tried any thyroid specific treatments: No
Your theories or comments: Sorry guys nice try. I think it's a serotonin deficiency.
Are we missing any important questions: Pretty thorough

 

02/12/2009
First Name: Brenda
Age: 56
Male or Female: female
City: Cary
State/Province: North Carolina
Country:
How long have you lived there: 1 year
Where were you born: Greenville, N.C.
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: One-On-One Special Education
How has Fibro affected your ability to work: A great deal of walking is involved, and it is now bothering me to walk. Now I am starting being fatigue, all the time, and having pains in my legs, joints etc.
How has Fibro affected your life: Can't walk as I normally could, short of breath, and having a great deal of pain.
What were your first symptoms: Pains in joints, legs, stiffiness
Your age at onset of symptoms: 50
How fast was your rate of decline: immediatley
What are your current symptoms: stiffness, pains in legs, joint
Number of years since you developed symptoms of fibromyalgia: 7 years
Do your symptoms include brain fog: NO
Number of years since you developed the brain fog: None
Describe the extent of your brain fog: NONE
Estimate number of doctors you have seen for Fibro related symptoms: 2
Do your doctors tend to focus on all your Fibro symptoms: My doctor has move to another country
Do your doctors treat your symptoms individually or collectively: Doctor moved
Describe your experience with doctors: I had a great experience with my doctor before she left the country. She had given me Plaxnil
What remedies or medications have you tried: Plaxnil
What makes you feel better: NONE
What makes you feel worse: NA
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: With me having Fibromyalgia, RA, is hard, for me to get up, and walk. Do this getter any worser than this?
Are we missing any important questions: no

 

02/11/2009
First Name: Carol
Age: 61
Male or Female: F
City: Goffstown
State/Province: New Hampshire
Country: USA
How long have you lived there: 10 yrs
Where were you born: Beverly Massachusetts
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: when I came down with very bad symptoms, I had been attending college and taking courses in Graphic Design.
How has Fibro affected your ability to work: I haven't worked in 10 years due to symptoms.
How has Fibro affected your life: Had to stop working and attending college with awful symptoms of Fibro in 1991.Has made stress in family relationships, as I cannot be counted on to attend various events. Family members tend to downplay Fibro, as they see it as a case of "mind over matter", as if I could just talk my Fibro away. Have kept up hobbis of painting and gardening when feeling better, which ususally comes in late spring.
What were your first symptoms: severe muscle pain with tight muscles, IBS accelerated, head pains, neck muscle spasms, pronounced allergies and IBS symptoms.
Your age at onset of symptoms: 46
How fast was your rate of decline: Very fast.
What are your current symptoms: tight muscles, spasms, headaches, dizziness, TMJ, IBS at times.
Number of years since you developed symptoms of fibromyalgia: 15
Do your symptoms include brain fog: no
Number of years since you developed the brain fog:
Describe the extent of your brain fog:
Estimate number of doctors you have seen for Fibro related symptoms: 8
Do your doctors tend to focus on all your Fibro symptoms: no they tend to ignore the fibro and concentrate on neck arthritis, blood pressure, and sinus problems.
Do your doctors treat your symptoms individually or collectively: individually
Describe your experience with doctors: I have been very frustrated, as the doctors imply that I have anxiety and do not relate that to the fibro dx. They rarely ask how I'm feeling regarding muscle pain or any other symptom of fibro, and tend to downplay any symptom they cannot allievate.
What remedies or medications have you tried: Flexeril, Advil, Tylenol, Tagamet, steriod nose spray, antihistamines, sudafed, librax. Also, Calcium & Vitamin D, B vitamins, probiotics.
What makes you feel better: antihistamines help with muscle pain. I don't know why this is unless histamine is released in great numbers by allergic reactions. Pain meds are not as effective for me. Calcium helps IBS.
What makes you feel worse: Cold damp weather, stress, excitment, eating fatty foods, tension.
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: just try to eat healthy well balanced diet. trying to drink more water to stay hydrated and flush toxins.
Have you tried any thyroid specific treatments: no
Your theories or comments: I began to have bad Fibro symptoms around the time of menopause. I think any infection or allergic response and stress of any manner makes the Fibro worse too. My symptoms come on sometimes in a mysterious manner, in which I cannot pinpoint what triggered it. This has been very frustrating.
Are we missing any important questions: no

 

02/10/2009
First Name: Mary
Age: 45
Male or Female: F
City: Niagara Falls
State/Province: ON
Country: Canada
How long have you lived there: 22yrs.
Where were you born: Toronto
Is this the first time you have taken our questionnaire: Yes
If not, why are you returning:
Are you still working: Yes
What is Your Line of Work: Work with special needs children.
How has Fibro affected your ability to work: Definitely, I only work part-time, on supply, when I am in remission.
How has Fibro affected your life: It has had a profound affect on all aspects of my life. I am constantly sleep deprived. My children think I am faking, my husband gets annoyed at times, I suffer from depression, gastrointestinal problems, migraines, brain fog,etc.
What were your first symptoms: Post-partum depression, dropping pots and pans, numbness and pain in hands and wrists.
Your age at onset of symptoms: 24
How fast was your rate of decline: very quick on-set, not diagnosed though until I was 31.
What are your current symptoms: sleep-deprived, gastro, depression, constant aches and pains.
Number of years since you developed symptoms of fibromyalgia: 21 years
Do your symptoms include brain fog: Yes
Number of years since you developed the brain fog: 21
Describe the extent of your brain fog: Mostly I have problems verbally articulating, but I also need to reread things often (like prescriptions)
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: I don't have a family doctor because I am too much bother!
What remedies or medications have you tried: I have tried 18 different sleeping pills, I have been on 4 different antidepressants,
What makes you feel better: currently on Lyrica, and it works for the pain, but doesn't address any other symptoms like poor sleep. The only drug that helps me sleep is Lorazadom. I live in my hot-tub during the winter.
What makes you feel worse: Cold, lack of sleep, being accused of making this up, too much exersion.
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 had my wisdom teeth out when I was 20, they were severely impacted, and I was blessed with 4 wisdom teeth on the top. When they were removed, the doctor damaged my sinuses. They became scarred and blocked which set off a reoccurring sinus infection. Things went down hill from there:(
Are we missing any important questions:

 

02/10/2009
First Name: Amy
Age: 39
Male or Female: female
City: Nevada
State/Province: Mo
Country: USA
How long have you lived there: all my life
Where were you born: Mo
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: no
What is Your Line of Work: Registered Nurse
How has Fibro affected your ability to work: have been on disability for 5 years
How has Fibro affected your life: I am not able to work in my profession that I worked very hard to obtain. I have seizures on a regular basis that keep me from driving anymore. I can't sleep, am racked with severe pain, fatigue. I almost lost my kids.
What were your first symptoms: sleep disturbance
Your age at onset of symptoms: 31
How fast was your rate of decline: months
What are your current symptoms: severe pain,fatigue,sleeplessness,fibrofog,confusion,seizures
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: misplace things,forget appts,numbers
Estimate number of doctors you have seen for Fibro related symptoms: 15
Do your doctors tend to focus on all your Fibro symptoms: no
Do your doctors treat your symptoms individually or collectively: individually
Describe your experience with doctors: excruciating
What remedies or medications have you tried: too many to list
What makes you feel better: nothing
What makes you feel worse: ???
Have you tried avoiding fluoride in your diet: yes
If so, which sources of fluoride: water
Have you made dietary changes to avoid any other neutrotoxins: yes
Have you tried any thyroid specific treatments: no
Your theories or comments:
Are we missing any important questions: can you help me

 

02/09/2009
First Name: candy
Age: 59
Male or Female: female
City: Anderson
State/Province: Indiana
Country: USA
How long have you lived there: 30 years
Where were you born: muncie 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: factory die setter
How has Fibro affected your ability to work: yes
How has Fibro affected your life: yes
What were your first symptoms: arm and back pain
Your age at onset of symptoms: 29
How fast was your rate of decline: very fast
What are your current symptoms: arm back leg chest pain
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: 2
Describe the extent of your brain fog: can't remember things that i need to do. on't comprehend reading very well.
Estimate number of doctors you have seen for Fibro related symptoms: 8
Do your doctors tend to focus on all your Fibro symptoms: they try to.
Do your doctors treat your symptoms individually or collectively: collectively
Describe your experience with doctors: they just want to give me drugs. they don't have a clue
What remedies or medications have you tried: nurontin,flexeril,effexor,wellbutin,pamelor,pain meds
What makes you feel better: sometimes hot baths, heating pads,sunshine
What makes you feel worse: cold weather
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: no
Have you tried any thyroid specific treatments: no
Your theories or comments: Had mono as a child(bad) Had a bad whip lash in a scating accident
Are we missing any important questions: can't think of any

 

02/09/2009
First Name: Karen
Age: 46
Male or Female: female
City: Turlock
State/Province: Ca
Country: USA
How long have you lived there: 46 years
Where were you born: USA
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: no/student
What is Your Line of Work: care provider/nursing student/parent
How has Fibro affected your ability to work: yes, chronic fatigue prevents me from being active beyond two hours or less.
How has Fibro affected your life: I am in constant shock over the pain and fatigue. I just failed a math test even though I have 99.5 credits with a 3.6 gpa. I may have to quit school until I find a way to deal with fm.
What were your first symptoms: Back pain or mental fog, I am not sure.
Your age at onset of symptoms: 30ish
How fast was your rate of decline: bed ridden in 2008 with chronic back and neck pain, following three months of treatment my Doctor told me that I had fm.
What are your current symptoms: Back pain, brain fog, hip joint pain, fatigue, leg cramps, medicated, hand joint pain
Number of years since you developed symptoms of fibromyalgia: 15 years ago I started experiencing this pain in my upper back.
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 3 but unsure
Describe the extent of your brain fog: In the middle of a conversations I will often forget what I was saying causing me to stand there with a blank look on my face and embarrassed and searching my thoughts for words and the current topic.
Estimate number of doctors you have seen for Fibro related symptoms: 2
Do your doctors tend to focus on all your Fibro symptoms: yes. painkillers, antidepressants, muscle relaxers, antienflamitories, and more
Do your doctors treat your symptoms individually or collectively: individually, pain killers antidepressants, muscle relaxers, antienflamitories, and more. I have just been perscribed predinisone adn indocine but am too weary to pick them up due to side affects of heart disease and etc.
Describe your experience with doctors: The Doctor that is treating me now, because the doctor that found my fm moved, is wanting to treat me as if I only have rhymatoid arthritice. pardon spelling errors. and is sending me to a RM doctor.
What remedies or medications have you tried: perscribed med as mentioned above, diet change, more raw foods fruits, vegies, nuts etc. I have cut out depressing medias, like the news hours and avoid emotional situations in other areas as well. I am searching with great hope for a cure.
What makes you feel better: Not being awake, sleeping or resting on my back as much as possilbe.
What makes you feel worse: Too much activity, sitting for prolonged periods in one position
Have you tried avoiding fluoride in your diet: no, the water in this areas is not florinated.
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: Yes, I have stated that I have been eating more raw and unprocessed foods.
Have you tried any thyroid specific treatments: no
Your theories or comments: I am thinking that fm is related to a breakdown in the nervious relay system of a sort based on my experience of pain associated with it and based on my limited studies in anatomy and physiology. My muscles feel like they are contracting but not releasing causing great pain beyond a cramping style. The physiological process that allows the muscle to release may have gone haywire, this in turn creates chronic fatigue or just plain exhaustion in my body and mind in a cyclical and perpetuating fashion. My ideas do not leave room for an explaination of the joint pain. The IBS is no supprise when dealing with sensitive and emotional people. I am anxious to see whether others have experienced years of debilitating stressors. My fm came on strong after I had been experiencing atronomical amounts of stress for several years related to issues with my husbands. It got to the point where I would not allow hope to arise within me because the disappointment that would always follow was too painful. We have finally resolved the problems but I am still ill.
Are we missing any important questions: I wish i could help more, but I cant' think of any missing information.

 

02/08/2009
First Name: Jane
Age: 42
Male or Female: female
City: London
State/Province: Essex
Country: UK
How long have you lived there: 6 years
Where were you born: England
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: no
What is Your Line of Work: Was a Project Manager: compters, software, technically assessmrnts.
How has Fibro affected your ability to work: yes
How has Fibro affected your life: 10 years as a F/T wheelchair user, vision blurring getting worse. gearing fades sometimes. Always tired, all over body pain has made my life completely change. I avoid cold, breezes, thin skin which can catch & bleed retricts the style and fabric of clothes.Able to handle 60-70% less stress than I could before this condition. Lots of allergies which change. Light sensitive paticularly to light over head.Usual stomach, bowel pain, vomiting, constipation. Leg spasms. Numb fingers and toes. Lost all my eye lashes last year & my my hair thinned alot. But I took iummo booster tablets and that seemed to rebalance it a little. Lashes gew back.
What were your first symptoms: Stiff neck, increased headache, flu symptoms such as body aches, lack of energy, desire to stay in bed warm sleeping. Reduced appetite.
Your age at onset of symptoms: 19 years ago 1990
How fast was your rate of decline: slow for 1st 8 years. Then after accident it all just sped up very quickly.
What are your current symptoms: Blurred vision most evenings and first hour after waking. Pain, stiffness swollen joints, Gout, stomach pain, constipation, poor sleep as keep moving about trying to aleviate pain. Increased headaches, irritable, get sressed easily. Small finger and index finger numb alot more and small toes on both feet numb alot more. Knee makes cracking sound after fainting & knee damage caused last year. Painful stiff neck and pain in all joints. Thin dry skin which is painful to the touch sometimes. Finger tips painful when touching things. Grip weaker (I drop cups) Short term memory impaired. Always dry sore throat constantly drinking cold or warm boiled water. Recent bad attack of body pain and Hemarroids after taking diet pills for 3 days. Stopped taking diet pills. Now 19 st. Gout eroded bone on one of my toes so I cannot bend toes. Painful jaw, twitchy eye alot.
Number of years since you developed symptoms of fibromyalgia: 19 years, diagnosed 2001 8 years ago.
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 9
Describe the extent of your brain fog: worse day, unable to remember my husbands' name, phone number, home address spelling. Year we married sometimes, Answer to question I usually know. Then I rest/sleep and I can then recall answers,
Estimate number of doctors you have seen for Fibro related symptoms: 5
Do your doctors tend to focus on all your Fibro symptoms: no
Do your doctors treat your symptoms individually or collectively: Individually
Describe your experience with doctors: Frustrating at worst, patronising. At worst 1 chap duggested it was a clincal condition (in my head) until my GP stepped in and wrote a letter disagreeing.
What remedies or medications have you tried: I cannot remember all pain relief. But current meds Tramadol 200 mg 1 pill x3 daily, Blood Pressure meds Labetalol, colchicine & Sulphipyrazone for Gout, Zopiclone sleeping pill 1 at night. Calcichew D3 Calcium chewable tablet. Piriton for allergies, Anusol cream for Hemarroids. Acupuncture: helpful but too expensive & not supportived by NHS sl the won't do referral for continued sessions. Currently taking marine grade fish oil capsules to try and combat fatigue as helped by sister with her M.E.
What makes you feel better: warm, quiet rooms, relaxing, going to the gym, laughing and joking with friends I trust. Aromatherapy massage sometimes.A good cry to relase tension.
What makes you feel worse: More than 1 person talking to me at once. A chill or cold draft, stress, bright hot places like hospitals, dentists. Cigerette smoke, bleach, air freshners, bumps which jarr painful bits. Not being believed.
Have you tried avoiding fluoride in your diet: yes & no
If so, which sources of fluoride: tap water as it mage me feel sick but I did not know fluoride was the problem
Have you made dietary changes to avoid any other neutrotoxins: I will try from now
Have you tried any thyroid specific treatments: G.P tests said my Thyroid was normal
Your theories or comments: I have read that Serotonin levels are known to be too high in the body of Fibro sufferer which increases sensitivity to pain and increases numbness/tingling too as the body is then chemically unbalanced. My pains & numbness in my hands and legs are often similar to a friend who has MS. Does this mean that this fluoride toxic poisoning has damaged my myelin sheath?
Are we missing any important questions: Has excercise made any difference to your pain or symptoms. My answer is NO but it improves my attitude because I feel I am trying to do something about it.

 

02/08/2009
First Name: Beth
Age: 44
Male or Female: Female
City: Woodbury
State/Province: MN
Country: USA
How long have you lived there: 6 years
Where were you born: Brooklyn, New York
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: student
How has Fibro affected your ability to work: I get tired easily, both physically and mentally
How has Fibro affected your life: I have only the half the stamina I used to have and when I push it, the symptoms are much worse.
What were your first symptoms: Brain fog, muscle pain, memory loss, fatigue
Your age at onset of symptoms: 41
How fast was your rate of decline: slow
What are your current symptoms: easily fatigued,muscle pain when I over exercise
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: Severe memory loss,trouble speaking
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: no treatment available, now use acupuncture
Describe your experience with doctors: Compassionate but no treatment
What remedies or medications have you tried: acupuncture
What makes you feel better: rest,acupuncture and chinese herbs
What makes you feel worse: stress, being too busy, over exercising
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride: tapwater
Have you made dietary changes to avoid any other neutrotoxins: no
Have you tried any thyroid specific treatments: no
Your theories or comments: I assumed it was due to a virus as I tested high for Epstein Barr
Are we missing any important questions: Have you had any recent illnesses that precipitated Fibro symptoms

 

02/08/2009
First Name: Joyce
Age: 65
Male or Female: Female
City: Corpus Christi
State/Province: Texas
Country: United States
How long have you lived there: 65 1/2 years
Where were you born: Vallejo, California
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: Yes
What is Your Line of Work: Office Manager, FC Bookkeeper
How has Fibro affected your ability to work: I have pain in shoulders, arms and hands.
How has Fibro affected your life: Have given up a lot of things I used to be able to do.
What were your first symptoms: Pain in arms and hips
Your age at onset of symptoms: 54
How fast was your rate of decline: it was slow until the last 2 years
What are your current symptoms: brain fog, pain all over
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: 2
Describe the extent of your brain fog: always kept budget without problems,now I have trouble with 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: neither
Describe your experience with doctors: First Doctor diagnosed it 7 years ago and started treating with an anti-depressant that I took at night so I could sleep.
What remedies or medications have you tried: Elevil
What makes you feel better: ACV
What makes you feel worse: Not taking it.
Have you tried avoiding fluoride in your diet: No, not until now.
If so, which sources of fluoride: tap water, pesticides,
Have you made dietary changes to avoid any other neutrotoxins: yes
Have you tried any thyroid specific treatments: I take Synthroid every day
Your theories or comments: I take ACV 3 times a day as well as garlic, tumeric, fish oil, vitamen C, OsteoBiflex, Ginko Baloba, vitamin for women over 50,
Are we missing any important questions: I don't think so.

 

02/07/2009
First Name: Becky
Age: 59
Male or Female: female
City: hillsboro
State/Province: tx
Country: usa
How long have you lived there: 10 years
Where were you born: 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: co-owner of small business
How has Fibro affected your ability to work: can't concentrate, can't sit too longin one spot, poor short term memory
How has Fibro affected your life: i no longer want to DO anything
What were your first symptoms: constant pain in my lower back, right side
Your age at onset of symptoms: 42
How fast was your rate of decline: not too bad - i do still function
What are your current symptoms: constant all-over pain, short term memory, depression
Number of years since you developed symptoms of fibromyalgia: 18 years
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: just the last two or so
Describe the extent of your brain fog: i just feel fuzzy and cant remember anything
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: don't treat
Describe your experience with doctors: very poor - i've been told i had rheumatoid arthritis - false - and i've been told its all in my head
What remedies or medications have you tried: so many years ago i cant remember, except i remember prednisone
What makes you feel better: mild exercise, like water aerobics, massage therapy and rest
What makes you feel worse: stress, changes in weather
Have you tried avoiding fluoride in your diet: no not specifically
If so, which sources of fluoride: water i guess, but i drink bottled water, so toothpaste only i presume
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:

 

02/07/2009
First Name: Chris
Age: 56
Male or Female: Female
City: Tempe
State/Province: AZ
Country: USA
How long have you lived there: 7 months
Where were you born: South Carolina
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: Have to work at home now.
How has Fibro affected your life: My life, health & well-being is now unpredictable - not knowing what is in store for me the next day. It has become an adventure of sorts - however, I no longer attempt to work, having others rely on my ability to be consistent, effective and reliable at work. My memory has been extensively affected - so my hopes of returning to Event Planning and/or Performing as a mean of support and fulfillment have diminished - but never say never! My life changed when I finally found a Doctor that understood how & why Fibro affects me and how to cope and thrive in that zone! He is a Psycho-Neurologist.
What were your first symptoms: Migraines - sleep apnea
Your age at onset of symptoms: Not sure...
How fast was your rate of decline:
What are your current symptoms: all on list except rash
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: Memory, Confusion, Loss of Time - makes for a good stand-up comedy routine if you keep a sense of humor about it all!
Estimate number of doctors you have seen for Fibro related symptoms: 5
Do your doctors tend to focus on all your Fibro symptoms: Sometimes
Do your doctors treat your symptoms individually or collectively: Neurologist - Individually Rheumatologist - Collectively
Describe your experience with doctors: Rheumo - frustrating Neuro - Amazing Now looking for new doctor in new town - very scarey.
What remedies or medications have you tried: Lyrica - only @ night due to narcotic side effects Alleve
What makes you feel better:
What makes you feel worse: catching a virus seems to make the symptoms worse - fatigue from my sleep apnea - extreme heat (we live in the desert)
Have you tried avoiding fluoride in your diet: I will now - thanx!
If so, which sources of fluoride: Cipro - lots in past for UTI's No tap water but bottle H2O What about showering?
Have you made dietary changes to avoid any other neutrotoxins: Would like to know more...
Have you tried any thyroid specific treatments: Not yet - but will ask Doctor!
Your theories or comments: Thank you SO much for this experience!
Are we missing any important questions: No - THANKS!!!!

 

02/06/2009
First Name: sarah
Age: 18
Male or Female: female
City: west topsham
State/Province: vermont
Country: united states
How long have you lived there: 6 years
Where were you born: st. johnsbury
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: deli, lifting heavy things
How has Fibro affected your ability to work: my back hurts to much to bend over, and i am always in painq
How has Fibro affected your life: my mother thinks i'm a hyprochondriac, and i barely graduated high school because i couldnt participate in gym class
What were your first symptoms: cracking elbows and ankles
Your age at onset of symptoms: 12
How fast was your rate of decline: it got worse w. in months
What are your current symptoms: EVERYTHING ON THE WEBSITE
Number of years since you developed symptoms of fibromyalgia: 6
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: probably 3
Describe the extent of your brain fog: i feel to lazy to think
Estimate number of doctors you have seen for Fibro related symptoms: 12
Do your doctors tend to focus on all your Fibro symptoms: no
Do your doctors treat your symptoms individually or collectively: individually
Describe your experience with doctors: they cant figure it out
What remedies or medications have you tried: never perscribed any
What makes you feel better: sitting
What makes you feel worse: when i get up
Have you tried avoiding fluoride in your diet: dont use
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: i dont use medication
Have you tried any thyroid specific treatments: no
Your theories or comments: i want to be able to run again, and get rid of this 60 year old body im living in
Are we missing any important questions:

 

02/06/2009
First Name: E
Age: 42
Male or Female: f
City: Denver
State/Province: CO
Country: USA
How long have you lived there: 19 years
Where were you born: WI
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: Mom, volunteer
How has Fibro affected your ability to work: I'm very tired and often don't have the energy to do the things I'd like to do;
How has Fibro affected your life: I don't have energy to live life the way I want, I get irritated being in pain all the time, I've gained a lot of weight
What were your first symptoms: pain in my neck, shoulders, fatigue
Your age at onset of symptoms: 33
How fast was your rate of decline: quick
What are your current symptoms: pain all over, "burning" sensation, fatigue, poor circulation - arms/hands fall "asleep" easily, headaches, memory loss, confusion, poor sleep
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: probably 4
Describe the extent of your brain fog: forgetfulness, forget who I called on the phone, where my car is parked, hard to read instructions and follow them through
Estimate number of doctors you have seen for Fibro related symptoms: 5
Do your doctors tend to focus on all your Fibro symptoms: no, but I'm seeing a new dr soon and am hopeful
Do your doctors treat your symptoms individually or collectively: individually
Describe your experience with doctors: Most aren't very knowledgeable and I generally bring info I find on the internet -- others push their own protocol and it might not meet my needs
What remedies or medications have you tried: Antidepressants, relaxants, yeast, mix of multivitamins, B vitamin mix, pain meds, anti-inflammatories, thyroid
What makes you feel better: Stretching, exercising when I can find the energy
What makes you feel worse: Not getting enough sleep, poor eating habits, working too much, staying in one position for any length of time
Have you tried avoiding fluoride in your diet: no, but I just read about that
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: I just read about fake sweeteners and MSG - have avoided aspartame for 3 weeks, and planning to do that from now on
Have you tried any thyroid specific treatments: yes, didn't help
Your theories or comments: I'm tired of being tired all the time and hate to get my hopes up when I read something new to try, but I'm going to try to avoid fluoride, aspartame, and MSG and see what type of results I get
Are we missing any important questions:

 

02/05/2009
First Name: Autumn
Age: 33
Male or Female: Female
City: McDonough
State/Province: Georgia
Country: USA
How long have you lived there: 3 years
Where were you born: Daytona Beach, FL
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: yes
What is Your Line of Work: office managers
How has Fibro affected your ability to work: The use of a computer hurts my wrists, elbows, lower back, and shoulders and neck most often. I feel like every part of me weighs a ton. To type this is hard.I have missed more days than the rest of my fellow employees put together. No one here gets it. File folders feel like they weigh 50 lbs.
How has Fibro affected your life: I feel like I am always complaining of the pain and constantly feel alone with it. i try to ignore it but I do so to thepoint that I can not move. My husband and son don't like to see mommy not being able to move. I can't take the Lyrica because I can't function at work with it. I am tired of ignoring or just dealing with it.
What were your first symptoms: pain in the neck. pain in my elbows. could not handle the lights being on or the TV being loud.
Your age at onset of symptoms: 28
How fast was your rate of decline: 3 years and now i feel like i am 80 years old
What are your current symptoms: every joint feels like it is about to give out. my right hand is numb. I can't move very fast at all.
Number of years since you developed symptoms of fibromyalgia: unsure
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 2
Describe the extent of your brain fog: i just forget what I am doing.I used to remember phone nubmers and directions very easily, now I don't. stare into space
Estimate number of doctors you have seen for Fibro related symptoms: 10 or more
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 have seen several doctors not know where the pain was stemming from and sent me on my way. I finally got to a neurologist diagnose me with Fibro and I finally new what was wrong. I tried the meds but I can't afford not to work.
What remedies or medications have you tried: walking, yoga, change of diet, over the counter meds
What makes you feel better: laying completley still with the lights off and no noise in the room. Oh and being warm not cold!
What makes you feel worse: Cold weather, stress, damp weather, noise
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: yes
Have you tried any thyroid specific treatments: no
Your theories or comments:
Are we missing any important questions:

 

02/05/2009
First Name: Ktherine
Age: 53
Male or Female: Female
City: Crescent City
State/Province: Calif
Country: USA
How long have you lived there: 5 years
Where were you born: Bakersfield, Calif
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: student studying language when stricken
How has Fibro affected your ability to work: yes
How has Fibro affected your life: I feel bad all of the time, and have trouble performing daily tasks, even eating is sometimes too tiring. My quality of life has diminished to that of an 8o year old.
What were your first symptoms: Muscle weakness, extreme fatigue.
Your age at onset of symptoms: 42
How fast was your rate of decline: Rapidly went from functioning to not able to walk within two weeks.
What are your current symptoms: Extreme fatigue, muscle weakness, joint pain, brain fog, IBS, insomnia, general aches and pains over whole body.
Number of years since you developed symptoms of fibromyalgia: 11
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 11
Describe the extent of your brain fog: Before I got FMS I was a straight A student with a sharp mind. Now I can't remember things for more than 2 seconds, nor can I multitask.
Estimate number of doctors you have seen for Fibro related symptoms: more than 10, I lost count years ago.
Do your doctors tend to focus on all your Fibro symptoms: No, they want to treat me for depression.
Do your doctors treat your symptoms individually or collectively: Individually, mainly focus on depression and insomnia. Nothing for pain because nothing I've tried works.
Describe your experience with doctors: Doctors frustrate me because they keep saying it's all in my head and that I have depression. I didn't get depressed until I lost everything when I got sick. Currently I see a doctor only to renew my thyroid medication.
What remedies or medications have you tried: Every anti-depressant under the sun, prednizone, sleeping pills, truck loads of Motrin.
What makes you feel better: Eating whole foods, light exercise - usually walking, SLEEP.
What makes you feel worse: Not sleeping, poor diet, laying around.
Have you tried avoiding fluoride in your diet: yes, recently
If so, which sources of fluoride: Tap water (have to bathe and do laundry with it though), no toothpaste, try to eat organic when I can and avoid processed foods.
Have you made dietary changes to avoid any other neutrotoxins: MSG, nitrates, iodized salt.
Have you tried any thyroid specific treatments: I switched from Synthroid to Armour which helped with joint pain but did not relieve it completely.
Your theories or comments: I just found out about fluoride and its toxicity. After buying reverse osmosis filtered water for the past 3 years we switched to an on-tap, charcoal filter (because of the cost of buying pre-flitered water) three months ago. I have noticed a worsening of my symptoms since the switch and will be going back to RO filtered water next month to see if my symptoms lessen.
Are we missing any important questions: not that I can think of

 

02/04/2009
First Name: Gina
Age: 25
Male or Female: Female
City: Wilmington
State/Province: North Carolina
Country: USA
How long have you lived there: 5 months
Where were you born: Berea, KY
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, part time and temp jobs
How has Fibro affected your ability to work: I am still able to work, although I have to get up more often to stretch or talk a short walk.
How has Fibro affected your life: I have gained weight, because I find it harder to get into an exercise pattern. My sleep patterns are also disturbed, making me sore in the a.m. and very tired.
What were your first symptoms: Extreme unexplained soreness, fatigue.
Your age at onset of symptoms: 19
How fast was your rate of decline: It was relatively slow, soreness escalated for about three months before it was bad enough to seek medical attention.
What are your current symptoms: Soreness, fatigue, depression, weight gain and an ulcer caused medication taken for fibro.
Number of years since you developed symptoms of fibromyalgia: 6 years.
Do your symptoms include brain fog: Yes
Number of years since you developed the brain fog: 6
Describe the extent of your brain fog: Brain fog is occasional, but makes it difficult to get work done. I also tend to zone out during conversations or forget what I've been told. This symptom is not bad now, but was really bad during college.
Estimate number of doctors you have seen for Fibro related symptoms: 5
Do your doctors tend to focus on all your Fibro symptoms: Not really, mostly just pain.
Do your doctors treat your symptoms individually or collectively: My doctors all focused primarily on pain reduction, although occasionally the depression has been the primary focus.
Describe your experience with doctors: My experience with my doctors is varied. One was horrible, wanted to treat me as if I had arthritis instead of Fibromyalgia. Others have been good, but not very well informed about Fibro. I've also seen a specialist, who was only interested in pursuing one course of action. Unfortunately it wasn't one that worked with my lifestyle.
What remedies or medications have you tried: Various anti-depressants and prescription pain drugs. I've used massage and I've also seen a chiropractor.
What makes you feel better: Cymbalta helps with depression and pain. Massage, of course, is great but short term and too expensive to keep up with.
What makes you feel worse: Lyrica and any sleep aid that is too strong.
Have you tried avoiding fluoride in your diet: No
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: No
Have you tried any thyroid specific treatments: No, but I have had my thyroid tested and it was normal.
Your theories or comments:
Are we missing any important questions:

 

02/02/2009
First Name: Melanie
Age: 33
Male or Female: Female
City: Murchison
State/Province: Victoria
Country: Australia
How long have you lived there: 4 months
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: No
What is Your Line of Work: Call Centre
How has Fibro affected your ability to work: Yes
How has Fibro affected your life: Unsociable, sleep all the time, cant be bothered, no longer can look after family
What were your first symptoms: Blood in urine, dizzyness, fatigue, nausea
Your age at onset of symptoms: 32
How fast was your rate of decline: I stopped work almost immediately and went down hill FAST
What are your current symptoms: Nausea, fatigue, odd sleeping hours, headaches, tingling in feet and hands, aching body (especially arms, should
Number of years since you developed symptoms of fibromyalgia: 1
Do your symptoms include brain fog: Sometimes
Number of years since you developed the brain fog: 1
Describe the extent of your brain fog: Unable to put words in a sentance
Estimate number of doctors you have seen for Fibro related symptoms: 4
Do your doctors tend to focus on all your Fibro symptoms: They just tut and ignore it
Do your doctors treat your symptoms individually or collectively: No Dr has even offered treatment
Describe your experience with doctors: I feel fobbed off. Once diagnosed it had a name so what more did I want?
What remedies or medications have you tried: Rest, healthy diet
What makes you feel better: Nothing
What makes you feel worse: To much activity, tiredness
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride: I don't have flouride in my water its rain water
Have you made dietary changes to avoid any other neutrotoxins: No?????
Have you tried any thyroid specific treatments: No
Your theories or comments: Dr's need to aknowledge this is a serious illness and help. I feel like my life has stopped
Are we missing any important questions: No

 

02/02/2009
First Name: Diane
Age: 44
Male or Female: Female
City: Galway
State/Province: Galway
Country: Ireland
How long have you lived there: 3 years
Where were you born: UK
Is this the first time you have taken our questionnaire: Yes
If not, why are you returning:
Are you still working: No
What is Your Line of Work:
How has Fibro affected your ability to work:
How has Fibro affected your life:
What were your first symptoms: pain in legs. cramp like symtoms. after exercise great difficulty in walking and getting up stairs.
Your age at onset of symptoms: 25
How fast was your rate of decline: from 25 - 35 steady and then from 35 rapidly worse.
What are your current symptoms: pain all over my body most of the time. very bad on an evening. worse after being seated for a while then standing.
Number of years since you developed symptoms of fibromyalgia: 19
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 9
Describe the extent of your brain fog: get words muddled. forget words for everyday items. forget to do things so I set my alarm for the simplest of tasks i.e. put the chickens away!
Estimate number of doctors you have seen for Fibro related symptoms: approx. 6
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: very poor, I feel like a hypochondriac most of the time. I was originally told the pains were due to stress! Hate going to the doctors now.
What remedies or medications have you tried: I have been given about 3 different types of pain killers, none worked. I buy over the counter Propain plus in the UK and that "takes the edge off the pain"
What makes you feel better: cannabis in cake! (not smoked)
What makes you feel worse: cold weather, tiredness, exercise
Have you tried avoiding fluoride in your diet: yes, I worry about the amount of fluoride I consume
If so, which sources of fluoride: I have fluoride free toothpaste but unfortunately Ireland puts fluoride in the drinking 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 despair at the pain I feel and the lack of help my doctors. I worry about the amount of toxins in the water and food and my teeth but feel helpless to do anything about it.
Are we missing any important questions: any other illnesses? yes, I have sarcoidosis in my lungs.

 

 

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