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Fibromyalgia Questionnaire & Results

Latest Update: 11/20/2009 

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35 QUESTIONNAIRE COMPLETED DATA FORMS FOR June 2009

06/29/2009
First Name: jemima
Age: 52
Male or Female: femle
City: coatbridge
State/Province: lanarkshire
Country: scotland
How long have you lived there: 52 years
Where were you born: scotland
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: yes
What is Your Line of Work: learning support assistant
How has Fibro affected your ability to work: it is getting harder every dy
How has Fibro affected your life: same as above
What were your first symptoms: trouble getting up and down stairs
Your age at onset of symptoms: ,51
How fast was your rate of decline: cant remember
What are your current symptoms: painfull hands getting up and down stairs getting up in the morning very stiff and painfull back aich when I sit for a while very stiff and soar etc
Number of years since you developed symptoms of fibromyalgia: one and six months
Do your symptoms include brain fog: no
Number of years since you developed the brain fog:
Describe the extent of your brain fog:
Estimate number of doctors you have seen for Fibro related symptoms: 3
Do your doctors tend to focus on all your Fibro symptoms: yes
Do your doctors treat your symptoms individually or collectively: no
Describe your experience with doctors: blood tests, xrays physo, examined all over
What remedies or medications have you tried: amitriptyline
What makes you feel better: not a lot
What makes you feel worse: doing different things
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 fibromyalgia can you loss your driving licence.
Are we missing any important questions: no

 

06/29/2009
First Name: Janet
Age: 60
Male or Female: female
City: Vernal
State/Province: Utah
Country: USA
How long have you lived there: 36 years
Where were you born: Michigan
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: no
What is Your Line of Work:
How has Fibro affected your ability to work: too much fatigue and pain
How has Fibro affected your life: I am about 80 lbs overweight, have high blood pressure, continuous headaches, insomnia,fluctuating blood sugar, depression, anxiety, problems with side effects of medication to treat these factors.
What were your first symptoms: Severe headaches.
Your age at onset of symptoms: 30
How fast was your rate of decline: Down hill since 1977 as I got older.
What are your current symptoms: Headache, chronic pain, insomnia, fatigue, depression, anxiety, weight gain, numbness in feet.
Number of years since you developed symptoms of fibromyalgia: Diagnosed in 1998--about 11 years.
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: About 15 years
Describe the extent of your brain fog: Failure to remember date, time passing, names, places, events.
Estimate number of doctors you have seen for Fibro related symptoms: About 5.
Do your doctors tend to focus on all your Fibro symptoms: Only one rheumatologist, the others were GP's who focused on individual symptoms.
Do your doctors treat your symptoms individually or collectively: Individually except for the rheumatiologist.
Describe your experience with doctors: Didn't listen well to symptoms, tended to dismiss me without adequate acknowledgement of my daily struggles.
What remedies or medications have you tried: Anti-depressants, benzodiazepines, sleeping pills, antihistamines, OTC NSAIDS, caffeine, alternative medicine organ extracts, herbs, essential oils, and rubs.
What makes you feel better: Warm shower or tub soak.
What makes you feel worse: Cold; long stretches of sitting, standing, or lying down, imobility; stress factors good and bad; advice from someone who doesn't have fibro.
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: Tried digestive tract cleansing but found it ineffective.
Have you tried any thyroid specific treatments: No.
Your theories or comments: I am ready to believe diet and additives are probably a big factor. I am presently changing my diet to more whole grains, fresh fruits and vegetables, and limiting dairy and animal protein from my diet; increasing exercise and change of going to bed earlier and getting up earlier.
Are we missing any important questions: Relatives who showed similar symptoms or related illness thought to be connected to fibro or chronic fatigue syndrome.

 

06/28/2009
First Name: Pattie
Age: 57
Male or Female: Female
City: Alturas
State/Province: CA
Country: USA
How long have you lived there: 10 years
Where were you born: Prineville, OR
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: no
What is Your Line of Work: retired RN on disability
How has Fibro affected your ability to work: I had gone from working 40 plus hours a week to gradually reducing hours to having to go on disability over a period of about 5 years.
How has Fibro affected your life: I use to be a person who was always on the move. I worked hard, cared for grandchildren, house, husband, pets. Now I am very tired most of the time. Can't exercise due to pain, weakness and the fatigue it causes. Nothing sounds exciting anymore and not much is pleasurable unless I could have someone waiting on me. It is a chore and great effort to get up from chairs, or bed. Stairs are a nightmare. My brain tires easily and I try to keep my speech at a minimum as it is even an effort to talk at times. Trying to describe the problem to anyone without a clue is wearing. I feel I will never be the same but can still have an inner joy only because of my faith.
What were your first symptoms: Over the past 5 years I've been saying, " I believe I know what people with fibromyalgia must feel like. Hep C also causes joint and muscle pain. I believe I suffer from both. My hands would get very touchy. I didn't want people shaking my hands. I have tenderness to touch of my arms and torso. I have pain and tenderness in the intercostal muscles of my ribs. My face is tender to touch at times as well as my scalp just hurts.
Your age at onset of symptoms: 52, hand pain55 rib pain 56 face and scalp and TMJ
How fast was your rate of decline: five uyears ago I was still having more good days than bad days. Since Hep C treatmen I believe I have declined rapidly.
What are your current symptoms: Brain Fog, hand, finger and wrist pain. Tenderpoints between shoulders and at top of neck. severe ankle and foot stiffness. Agitation. Fatigue after small amount of activity. Insides of knees and outside of hips very tender and extremely stiff.
Number of years since you developed symptoms of fibromyalgia: At least five.
Do your symptoms include brain fog: Yes
Number of years since you developed the brain fog: 5 years
Describe the extent of your brain fog: When I was still nursing, I had to have other nurses check my dosages as I couldn't think clearly. Having trouble remembering names of people I've known for years. Can't recall nouns that I need. Can't recall alot of my medical nursing information.
Estimate number of doctors you have seen for Fibro related symptoms: 2
Do your doctors tend to focus on all your Fibro symptoms: My PCP hasn't mentioned the word FM. I have to him but he seems to not want to label me yet. My NP who does all me female stuff states she is sure I have FM.
Do your doctors treat your symptoms individually or collectively: My PCP provides pain medication because he believes I'm in pain at least because of Hep C.
Describe your experience with doctors: Being a nurse and doing alot of research on Hep C...my PCP and I make decisions together on treatment. He believes me when I say I have pain.
What remedies or medications have you tried: Vicodin 4 times daily. Took tylenol and Ibuprofen cocktail before Vicodin. Tried changing to vegetarian diet. No conclusion on that yet.
What makes you feel better: Hot tub for pain. Fans for heat.
What makes you feel worse: Overworking, overdoing.When people don't get it.
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: vegetarian
Have you tried any thyroid specific treatments: no
Your theories or comments: My theory is I got Hep C fromtransfusion. Hep Cers have more chance of getting FM than normal population. I believe EBV doesnt' help nor did having meningitis.I believe Interferon and Ribaviron exacerbated FM.
Are we missing any important questions: Has anyone in my family had similar symtoms? My grandmother use to say how she hurt all over and thah no one should have to hurt like she hurt. My mother also hurt all over and had a hard time getting out of chairs or bed. Very tired alot.

 

06/28/2009
First Name: Candy
Age: 34
Male or Female: Female
City: Ravenel
State/Province: SC
Country: United States
How long have you lived there: 4 years
Where were you born: Sumter, SC
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: Medical Billing
How has Fibro affected your ability to work: Extreme fatigue made it impossible to stay out of bed
How has Fibro affected your life: I had no energy to do anything. Even the most basic things around the home were more than I had energy for so forget going out.
What were your first symptoms: Headaches, fuzzy, dizzy head, extreme fatigue
Your age at onset of symptoms: 27
How fast was your rate of decline: I have experienced pain most of my life and probably had it long before I realized it but with the symptoms above, it all happened quickly, within 2 months
What are your current symptoms: Pain, fatigue, dizziness, muscle weakness, nausea
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: 2
Describe the extent of your brain fog: Things just don't come out right when I talk, no matter how hard I try, can't remember things,
Estimate number of doctors you have seen for Fibro related symptoms: 4
Do your doctors tend to focus on all your Fibro symptoms: NO
Do your doctors treat your symptoms individually or collectively: Individually
Describe your experience with doctors: Horrible...noone would look at the big picture and therefore I could not get any type of resolution. I gave up on doctors and went the natural route and am much better.
What remedies or medications have you tried: Raw Food Diet was most effective, herbs and supplements
What makes you feel better: Raw Food Diet and herbs and supplements
What makes you feel worse: Eating bad and not taking my supplements
Have you tried avoiding fluoride in your diet: yes
If so, which sources of fluoride: toothpaste (we have well water)
Have you made dietary changes to avoid any other neutrotoxins: Try to eat more organic
Have you tried any thyroid specific treatments: Yes
Your theories or comments: Harvey Diamond's book about FMS, CFS and Lupus is what put me on the road to recovery. After doing what he said I was symptom free.
Are we missing any important questions: Not all of us trust the medical community with our health. I certainly don't. A broken bone yes, FMS, infections, and almost anything else, no. More questions about alternative methods. I have never taken medication for my FMS. I only went to the doctor to get the diagnosis then turned down all his offers of prescriptions, went home and got on the computer and found natural ways to fix me.

 

06/27/2009
First Name: Pennie
Age: 64
Male or Female: female
City: Maryborough
State/Province: Queensland
Country: Australia
How long have you lived there: born here
Where were you born: Brisbane Queensland
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: seamstress
How has Fibro affected your ability to work: unable to work
How has Fibro affected your life: bought it to a screaming halt
What were your first symptoms: feeling as if I was coming down with flu
Your age at onset of symptoms: 40
How fast was your rate of decline: only if I was sick
What are your current symptoms: flulike symptoms- weakness -pain- feeling like a blimp
Number of years since you developed symptoms of fibromyalgia: 24
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 10
Describe the extent of your brain fog: unable to multitask - be half way through a sentence and forget what I'm talking about. Unable to think
Estimate number of doctors you have seen for Fibro related symptoms: 6
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: Was treated for Ross River Virus until after small op when doctor decided it was not - I was the one who realised it was fybromyalgia
What remedies or medications have you tried: amytriptalyne - tramal
What makes you feel better: cq 10 enzyme
What makes you feel worse: humidity and rain
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: no
Your theories or comments: This illness does not have a set of symptoms. Each time it is different
Are we missing any important questions:

 

06/25/2009
First Name: WENDY
Age: 50
Male or Female: FEMALE
City: STAUNTON
State/Province: VA
Country: SA
How long have you lived there: 26 YEARS
Where were you born: STAUNTON
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: HEALTHCARE
How has Fibro affected your ability to work: SOMETIMES
How has Fibro affected your life: YES
What were your first symptoms: CHEST PAIN, BACK AND SHOULDER PAIN.
Your age at onset of symptoms: 32
How fast was your rate of decline: SLOW PROGRESSION
What are your current symptoms: ACHY JOINTS, MUSCLES, FATIGUE, MEDICATED FOR DEPRESSION, CHEST PAIN.
Number of years since you developed symptoms of fibromyalgia: 19
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: 1
Do your doctors tend to focus on all your Fibro symptoms: DON'T KNOW
Do your doctors treat your symptoms individually or collectively: NO
Describe your experience with doctors: HE BELIEVES ME BUT UP TO THIS POINT I've been able to handle it on my own
What remedies or medications have you tried: ibuprophen once a day
What makes you feel better: see above. most of the time
What makes you feel worse: not taking them
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: no. I dont have a clue of what to do
Have you tried any thyroid specific treatments: no
Your theories or comments:
Are we missing any important questions:

 

06/25/2009
First Name: T.
Age: 31
Male or Female: Female
City: Medford
State/Province: Or
Country: USA
How long have you lived there: 4.5 years
Where were you born: Ventura
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: Business PRocess Manager/ Insurance
How has Fibro affected your ability to work: Difficulty concentrating/ remembering past work occurances/ staying focused
How has Fibro affected your life: Low energy/ In pain all over body all the time/ Very stiff in mornings/ Achy/ Need to rest in physical activity
What were your first symptoms: Memory Loss/Body pain in legs/Difficuly walking up stairs/ Stiff and achy all over
Your age at onset of symptoms: 21ish worse at 29
How fast was your rate of decline: Over 10 years or so, feeling it getting worse quickly / Mostly feel it in the morning or excercising
What are your current symptoms: Moderate Memory Loss/ Foggy thoughts/Weird aches and pains for no reason in body/ Stiff legs/ numbness/ muscle twitches.
Number of years since you developed symptoms of fibromyalgia: about 8 to 10
Do your symptoms include brain fog: Yes
Number of years since you developed the brain fog: 8 to 10
Describe the extent of your brain fog: Remembering life occurances, conversations, people, places I have been and with who. Very difficult for relationships. This can include as recent the previous day or week. I feel like my past is missing, I can't recall many times. Short term, at work seems ok. I jump to new projects which accomodates this.
Estimate number of doctors you have seen for Fibro related symptoms: 10
Do your doctors tend to focus on all your Fibro symptoms: No,i get tossed to all different specialsts for tests that find nothing.
Do your doctors treat your symptoms individually or collectively: No, all they do is offer me pain pills when i do not really complain of the pain as it is not stationary or severly localized.
Describe your experience with doctors: Terrible. They dont look me in the eye. I try to show my military records and links to anthrax shots and I get nothing but oh, interesting, would you like a pill for that? I don't go anymore. I don't take medications.
What remedies or medications have you tried: Excercise. ACV. Hot baths. Stretching. Plenty of sleep. Reduce daily stressors.
What makes you feel better: Hot baths and massage. Stretching. Sleep is good for me, but, I wake up so stiff and achy, like I walked all night, or even if it was a short nap. I have to step slow and warm up to walking. I am only 31 and feel 81.
What makes you feel worse: I feel worse if I dont do what makes me feel better. Otehr than that, nothing I can point at. Lack of sun maybe.
Have you tried avoiding fluoride in your diet: Yes, I do currently.
If so, which sources of fluoride: Toothepaste, pesticides, our tap water is not flouridated.
Have you made dietary changes to avoid any other neutrotoxins: Yes, all vegetarian and mostly dairy free for 2 years. No additives and preservitives. Limit gluten. Veg e fed/ hormone free dairy and eggs if any.
Have you tried any thyroid specific treatments: Coconut oil in my hot tea, daily. This helped raise my low body temp from 96.2 to 98.6 over a few weeks. No Dr or Prescript Drug treatments.
Your theories or comments: I have tracked my Lot #s of the anthrax vaccinatiosn I was given and 3 of 8 to be contaminated with Squalene anti-bodies. Not sure how much this is pertinent, no one to talk to about it. Just found some articles and did research. Dr's dont want to talk to me about it. I have the paper trail. No probs before this series of vacc. Healthy and active female,still am trying to be. I feel old in my body.
Are we missing any important questions: Vaccinations

 

06/25/2009
First Name: Bonnie
Age: 73
Male or Female: Female
City: Petoskey
State/Province: Michigan
Country: USA
How long have you lived there: Since birth
Where were you born: Traverse City, MI.
Is this the first time you have taken our questionnaire: Yes
If not, why are you returning:
Are you still working: No
What is Your Line of Work:
How has Fibro affected your ability to work:
How has Fibro affected your life: My pain began when I was ten yers old. Started with leg pain, headaches, migraine headaches @14 yrs. IBS @ 23 yrs. Although I married raised five sons'. worked in management, the muscle pain has always been present. Many trips to doctors trying to find an answer. The quality of my life is poor.
What were your first symptoms: aching legs, headaches.
Your age at onset of symptoms: 10yrs
How fast was your rate of decline: Gradually over 63 years
What are your current symptoms: Deep muscle pain, headaches, stiffness.
Number of years since you developed symptoms of fibromyalgia: 63 years
Do your symptoms include brain fog: YES
Number of years since you developed the brain fog: ABOUT 15
Describe the extent of your brain fog: Forgetting words in mid sentence.
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: Individually
Describe your experience with doctors: Doctors didn't know how to diagnosis what I had for many years
What remedies or medications have you tried: Elavil, Effexor, Oxycotin, Prozac, Paxil, Darvoset, Cymbalta, Vicodin
What makes you feel better: Vicodin relieves my pain.
What makes you feel worse: Effexor, Oxycotin, Prozac, paxil
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: Yes
Have you tried any thyroid specific treatments: No...Thyroid test normal
Your theories or comments: I have just started the new drug Savella. The first three weeks I experienced bad side effects. Starting to feel better.
Are we missing any important questions:

 

06/24/2009
First Name: courtney
Age: 36
Male or Female: female
City: columbia
State/Province: sc
Country: united states
How long have you lived there: 30 years
Where were you born: columbia sc
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: mother of 2 boys
How has Fibro affected your ability to work: at home yes, I have a hard time keeping up with the house and leaning over cutting up food
How has Fibro affected your life: it has stopped me from doing alot i enjoy cleaning, exercising, thinking correct it has made me nervous and sex is too painfull
What were your first symptoms: pains in my arms inner knees hands all over hurt sensitivity to food, light, noise smells
Your age at onset of symptoms: i think i was about 15
How fast was your rate of decline: past 3 years fast
What are your current symptoms: bad pains everywhere dizziness light drives me nutts and smells make me sick
Number of years since you developed symptoms of fibromyalgia:
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 3
Describe the extent of your brain fog: i have a hard time remembering words and what i am doing
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: they tell me i have anxiety and try to put me on weird pills
What remedies or medications have you tried: apple cider vinegar, heatpack, hot baths vicks vapor rub helps
What makes you feel better: heat and vicks
What makes you feel worse: stress , loud noises being rushed 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: yes
Have you tried any thyroid specific treatments: no
Your theories or comments:
Are we missing any important questions:

 

06/24/2009
First Name: Katrina
Age: 19
Male or Female: F
City: Rockford
State/Province: IL
Country: USA
How long have you lived there: 19 years
Where were you born: IL
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: no
What is Your Line of Work:
How has Fibro affected your ability to work: the pain and fatigue and that generally "lousy" feeling make it difficult to perform tasks at work and keep up good attendance.
How has Fibro affected your life: I'm only 19, so to wake up each day tired and in pain at my age is very frustrating. I find it difficult to work, I've had to sit out a year of college, and I can't even enjoy simple things like shopping, hiking, and playing with my little brother without pain and exhaustion.
What were your first symptoms: Knee pain, headaches, and a tightening in my back when I walked for a long time.
Your age at onset of symptoms: 13
How fast was your rate of decline: gradual, but steady. I began at 13, and now at 19 I have full blown fibro.
What are your current symptoms: Pain in my knees and ankles, especially when I walk. Deep muscle aches through my back, neck, and arms, and sometimes legs. Headaches, irritable bowel, irritable bladder, frequent sore throats, fatigue, sleep disturbances, some trouble concentrating, morning stiffness, etc.
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 forgetfulness,a little trouble concentrating. Not extensive.
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: My family doctor ran blood tests, then quickly referred me to a rheumatologist. He examined me, told me I had fibro, handed me a prescription for an anti-depressant to help with the pain and sleep disturbances (which I never filled), and did nothing further. I currently have no doctor truly helping me...everyone just tells me to learn to live with it.
What remedies or medications have you tried: Vitamin D supplements, potent multi-vitamin
What makes you feel better: Hot showers or whirlpools, heating pads, laying down or reclining, light stretching
What makes you feel worse: Weather changes (storms, rain, pressure changes), exertion, standing or walking for very long, not getting enough sleep
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: no
Have you tried any thyroid specific treatments: no, they said my thyroid was excellent
Your theories or comments: I question possible hormone connection...since fibro affects so many more women than men. Otherwise, I'm clueless.
Are we missing any important questions: No questions about hormonal conditions.

 

06/23/2009
First Name: Patty
Age: 64
Male or Female: female
City: New Castle
State/Province: In
Country: usa
How long have you lived there: 64
Where were you born: same
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: no
What is Your Line of Work: health care
How has Fibro affected your ability to work: not able to physical work, mind doesn't work properly
How has Fibro affected your life: almost every aspect of it
What were your first symptoms: deep hip painthat woke me up
Your age at onset of symptoms: 45
How fast was your rate of decline: gradual
What are your current symptoms: hip and back pain are the worst, with fatigue and memory and concentration problems
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: 10
Describe the extent of your brain fog: memory loss , lack of concentration, procrastination, lack of initiative
Estimate number of doctors you have seen for Fibro related symptoms: eight or nine
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, most tend to treat you as depressed
What remedies or medications have you tried: lots of prescriptionsthat didn't work, pain management, tens unit, water therapy, on and on
What makes you feel better: sleeping
What makes you feel worse: physical activity
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: no
Have you tried any thyroid specific treatments: take thyroid supplement
Your theories or comments: just wish someone had a cure
Are we missing any important questions: yes, how does this make you feel

 

06/23/2009
First Name: Ana
Age: 37
Male or Female: female
City: Elizabeth
State/Province: NJ
Country: USA
How long have you lived there: 37 years
Where were you born: New York
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: yes
What is Your Line of Work: social services
How has Fibro affected your ability to work: difficult to walk, stand, every movement
How has Fibro affected your life: can't move like I use to
What were your first symptoms: numbness in legs
Your age at onset of symptoms: 29
How fast was your rate of decline: 7 years
What are your current symptoms: pain, spasm, numbness
Number of years since you developed symptoms of fibromyalgia: 3 years
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: maybe about 3
Describe the extent of your brain fog: dissiness, difficulty remembering things
Estimate number of doctors you have seen for Fibro related symptoms: 5
Do your doctors tend to focus on all your Fibro symptoms: they try
Do your doctors treat your symptoms individually or collectively: collectively
Describe your experience with doctors: so so
What remedies or medications have you tried: lirica
What makes you feel better: nothing yet
What makes you feel worse: doing nothing for it
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:

 

06/23/2009
First Name: Gin
Age: 54
Male or Female: Female
City: New Providence
State/Province: PA
Country: USA
How long have you lived there: 20 yrs
Where were you born: SI, NY
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: yes
What is Your Line of Work: retail sales
How has Fibro affected your ability to work: fatigue & aches make it difficult to work a long day. Fibro fog is tough to overcome. Sleep deprivation. stomach upsets
How has Fibro affected your life: Depression, pain, sleeplessness, fibrofog make it tough to live a spontaneous life
What were your first symptoms: continual aching, stiffness, tender points, fibro fog, irritable bowel, yeast infections
Your age at onset of symptoms: 35
How fast was your rate of decline: I was in decline from before diagnosis. Felt relief at just being taken seriously, having an answer. The multiple guesses at treatment plans over several years sometimes help, very often hurt. Sometimes it was hard to get out of bed & face another day
What are your current symptoms: tender points, aches, stiffness, exhaustion, irritable bowel
Number of years since you developed symptoms of fibromyalgia: 19 yrs since diagnosis
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 19 plus
Describe the extent of your brain fog: difficulty putting thoughts into words, spaciness, difficulty with decision making/action plans
Estimate number of doctors you have seen for Fibro related symptoms: 4
Do your doctors tend to focus on all your Fibro symptoms: not at first. Had to really fight with all of them to track my symptoms, to prove my suspicions. Symptomatic agreement finally!
Do your doctors treat your symptoms individually or collectively: collectively if I coordinate the details
Describe your experience with doctors: Frustrating with GP,first Rheumatologist. Very good with 2nd Rheumatologist,Chiropractor, and MD/accupuncturist
What remedies or medications have you tried: Zoloft, Effexor, amytriptillin, flexeril, clonapin, many nsaids, tramadol, accupuncture, massage, PT, biofeedback, Feldenkreis, meditation, yoga
What makes you feel better: meditation, massage,feldenkreis, accupuncture, Effexor, amytriptalline, yoga
What makes you feel worse: flexeril makes me goofy, Zoloft made me anxious, many nsaids upset my digestive track or had other side effects
Have you tried avoiding fluoride in your diet: no need, H2O comes from a spring
If so, which sources of fluoride: none
Have you made dietary changes to avoid any other neutrotoxins: I eat and grow organic foods. Try to avoid processed foods. Check origins of meats & fish to avoid steroids, heavy metals, etc.
Have you tried any thyroid specific treatments: no
Your theories or comments: Being centered through meditation, yoga, biofeedback, eating well & purposefully helps the most. Prioritizing my schedule & valuing my need to take time for my health via extra rest is huge.
Are we missing any important questions: Are there connections to Candida or other organisms? What about Chronic Fatigue and viruses

 

06/23/2009
First Name: Barbara
Age: 63
Male or Female: female
City: Salt Lake City
State/Province: UT
Country: United States
How long have you lived there: 1yr and a half
Where were you born: California
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: yes
What is Your Line of Work: I'm serving a mission for my church
How has Fibro affected your ability to work: When I'm unable to sleep and the pain is bad I still work but suffer greatly
How has Fibro affected your life: There are alot of things that are difficut to accomplish because of fatigue and pain.
What were your first symptoms: exhaustion and lack of sleep along with all over body pain also not being able to think clearly
Your age at onset of symptoms: 58 yrs
How fast was your rate of decline: fast I still have the same symptons as when first diagnosed
What are your current symptoms: Sleep proplems, all over burning pain, back pain, fatigue and I think I'm depressed, mostly because I can't find a doctor to help me.
Number of years since you developed symptoms of fibromyalgia: 6yr
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 6yr
Describe the extent of your brain fog: I have trouble mostly when I don't get the sleep I need. It is like when I fall sleep when by body is trying to go into the deep sleep needed I wake up. That and conbined with the pain I just can't even rest.
Estimate number of doctors you have seen for Fibro related symptoms: 7
Do your doctors tend to focus on all your Fibro symptoms: No. One even told me that Fibro does not cause burning pain.
Do your doctors treat your symptoms individually or collectively: I no longer see medical doctors. I have been going to an acupture docter who has helped me more than any other dr. I have seen. The only draw back is that the treatment effects don't last.
Describe your experience with doctors: I have felt that they did not hear what I was saying to them and they would get out their pad to write a percription before I could even finish telling them my problems. When I was first diagnosed I would tell them that what they were doing was not working and their answer to me was to raise the anti depression dose. I quit all meds at that time cold turkey and do not plan on taking any of those again.
What remedies or medications have you tried: Prozat( not sure of spelling) Ambiem, various herbs
What makes you feel better: At present nothing. I do get some relief from acpunture but it does'nt last. soaking in hot water
What makes you feel worse: Not getting proper sleep
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: I try to eat as close to nature as possible.
Have you tried any thyroid specific treatments: I have Graves diesese and had half my Thyroid removed back in the 1960. I have had one problem since then in the early 80's and receive a anti toxin for 6 months and was told if it happen again the tyroid would have to be removed.
Your theories or comments: someone needs to listen to us. We need to know all the treatments that have been effective to others. This is a condition that affects all areas of our lives. I know stress and the expection of others can greatly affect us. We need support not" it's all in your head." I think because we look okay on the outside that people don't take us sereously. I for one try to be a protuctive person and do my part. If I had a broken arm everyone would see and try to help. I wish that tradtional and alternative medicine would work together and not compete and were truely interest in helping people get better and not the profit of it all. Thank you
Are we missing any important questions:

 

06/23/2009
First Name: Tricia
Age: 43
Male or Female: Female
City: New Port Ricey
State/Province: Fl
Country: USA
How long have you lived there: 29 years
Where were you born: NY
Is this the first time you have taken our questionnaire: Yes
If not, why are you returning:
Are you still working: No
What is Your Line of Work:
How has Fibro affected your ability to work: Yes
How has Fibro affected your life: feeling terrible and extreme pain and fatigue causes me to stay home more
What were your first symptoms: Extreme fatigue, aches in arms
Your age at onset of symptoms: 35
How fast was your rate of decline: steadily
What are your current symptoms: fatigue, muscle aches, flu like feeling
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: not sure
Describe the extent of your brain fog: varies, mainly loss of words
Estimate number of doctors you have seen for Fibro related symptoms: 6
Do your doctors tend to focus on all your Fibro symptoms: yes, now I attend the FCC Center in Atlanta Ga
Do your doctors treat your symptoms individually or collectively: collectively
Describe your experience with doctors: Excellent
What remedies or medications have you tried: Dr Teitelbaums reccommended protocol for treatments outlined by FCC Clinic
What makes you feel better: taking reccommended meds and supplements along with IV therapy
What makes you feel worse: barometric pressure, weather,
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: no
Have you tried any thyroid specific treatments: yes
Your theories or comments:
Are we missing any important questions:

 

06/22/2009
First Name: Tali
Age: 21
Male or Female: Female
City: Boston
State/Province: MA
Country: USA
How long have you lived there: 3
Where were you born: Jerusalem, Israel
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: Chemist
How has Fibro affected your ability to work: It's been difficult functioning under the influence of pain killers or pain
How has Fibro affected your life: On bad days I lack motivation to do anything at all. Depression is a problem though so far I've managed it well. Very discouraging to have been diagnosed so early.
What were your first symptoms: Pain primarily in right hip extending down to knees. Milder pain in left hip.
Your age at onset of symptoms: 20
How fast was your rate of decline: about 6 months from the time of first symptoms with very rapid and severe decline from mono infection (about 1 month)
What are your current symptoms: Pain in all 18 characteristic points. Poor sleep. Touchy stomach.
Number of years since you developed symptoms of fibromyalgia: 1
Do your symptoms include brain fog: no
Number of years since you developed the brain fog:
Describe the extent of your brain fog:
Estimate number of doctors you have seen for Fibro related symptoms: 3
Do your doctors tend to focus on all your Fibro symptoms: Most of them. No one has mentioned brain fog before. It frightens me.
Do your doctors treat your symptoms individually or collectively: Individually. Not many treatments are available for collective treatment of symptoms
Describe your experience with doctors: I got lucky with a doctor that caught the signs fairly quickly.
What remedies or medications have you tried: Vicodin, Tramadol, Cymbalta, muscle relaxants, sleep, exercise
What makes you feel better: Cymbalta, pain killers, massages, hot showers
What makes you feel worse: Too much exercise, lack of sleep, bed rest, cold, rain, standing or sitting too long
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: no
Have you tried any thyroid specific treatments: no
Your theories or comments: I think this disorder may be related to sleep patterns. Disrupted fourth stage of sleep may lead to poor muscle repair.I recommend for anyone who has access to medical papers and research studies to read all that is available. I've come across some interesting information that is rarely mentioned by doctors. Find a way to sleep at all costs. Get the full 8 hours if you can. It makes a huge difference. Talk to your doctors about Cymbalta (though expensive) and other medications that are similar. It really does help.
Are we missing any important questions: You've covered most questions but I would like to see more information on brain fog and nuetrotoxins. How does removing fluoride from a diet contribute to imrpovement in symptoms?

 

06/22/2009
First Name: Brenda
Age: 72
Male or Female: female
City: FELIXSTOWE
State/Province: Suffolk
Country: UK
How long have you lived there: all my life
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: Retired
What is Your Line of Work: Administrator- own business
How has Fibro affected your ability to work: Have retired now. but it would have made life very difficult
How has Fibro affected your life: Take things more quietly and pace myself. Fibromyalgia hit me after having temporal arteritis
What were your first symptoms: Got temporal arteritis at 68ys and after being treated with steroids- prednisilone developed fibromyalgia.
Your age at onset of symptoms: 68
How fast was your rate of decline: Rapid, great difficulty in walking and getting up and down. particularly from sitting position
What are your current symptoms: Tiredness, fatigue, slightly depressed, but I do have a positive attitude. Knees, and legs hurt, knees burn up and legs subject to cramp at night.
Number of years since you developed symptoms of fibromyalgia: Four
Do your symptoms include brain fog: no
Number of years since you developed the brain fog: n/a
Describe the extent of your brain fog:
Estimate number of doctors you have seen for Fibro related symptoms: one consultant
Do your doctors tend to focus on all your Fibro symptoms: Not really, because I have a history of arthritis, and because of my age. They tend to disregard, but are quite happy to dish out pills.
Do your doctors treat your symptoms individually or collectively: collectively
Describe your experience with doctors: Pill pushers in the main. Find it better to make myself exercise and try to keep active. Need an afternoon nap now which is a new thing for me.
What remedies or medications have you tried: Varous pain killers.
What makes you feel better: Hot showers and a nap. Regular exercise for 10/15 minutes daily on my chi machine.Also have recently discovered Emu oil one my knees seems to keep them in better shape, - not so painful and achy
What makes you feel worse: Walking too far, especially if I am carrying shopping.
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: Use a Brita filter
Have you tried any thyroid specific treatments: No
Your theories or comments: IT IS PURELY AFFECTING MUSCLES NOT MY BONES. PREVIOUSLY IT WAS MY BONES AFFECTED WITH THE ARTHRITIS
Are we missing any important questions: I DO FEEL THAT PHYSIOTHERAPY MIGHT BE ADVANTAGEOUS, IN MANY CASES. IN THE 4 YEARS I HAVE HAD THE COMPLAINT MY MUSCLE TONE BECAUSE OF THE EXERCISES I DO HAS DEFINITELY IMPROVED, BUT THIS IS THRU MY OWN PERSEVERANCE NOT A DOCTOR'S RECOMMENDATION

 

06/20/2009

First Name: c.b.
Age: 40
Male or Female: female
City: hattiesburg
State/Province: ms
Country: forrest
How long have you lived there: all my life
Where were you born: hattiesburg

Is this the first time you have taken our questionnaire: no
If not, why are you returning: yes
Are you still working: some days
What is Your Line of Work: cleaning service.
How has Fibro affected your ability to work: its slowed me down and its hard to finish tasks.
How has Fibro affected your life: to the point i can't enjoy my life, family and friends.I stay home a lot.
What were your first symptoms: moring stiffiness,widespread.
Your age at onset of symptoms: 30
How fast was your rate of decline: the first few years.
What are your current symptoms: widespread pain, burning,stabing pain,stiffness,and bad backpain.
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: 8
Describe the extent of your brain fog: I cant think clearley or concentrate
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: collectively
Describe your experience with doctors: they just
What remedies or medications have you tried: muscle and pain medication
What makes you feel better: nothing
What makes you feel worse: anything
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride: no
Have you made dietary changes to avoid any other neutrotoxins: no
Have you tried any thyroid specific treatments: no
Your theories or comments:
Are we missing any important questions:

 

06/19/2009
First Name: Beverly
Age: 69
Male or Female: f
City: Franklin
State/Province: TN
Country: usa
How long have you lived there: 39 years
Where were you born: toledo ohio
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: no
What is Your Line of Work: i was a service representative for the telephone company
How has Fibro affected your ability to work:
How has Fibro affected your life: pain, no energy at times but never very energetic, fog most of the time and the meds have severely impaired my thinking
What were your first symptoms: probably pain: joint pains, leg pains (growing pains?), extreme tiredness when had ana test
Your age at onset of symptoms: 3 or 4 or age 7 or 50
How fast was your rate of decline: fast
What are your current symptoms: tired, total lack of focus at times, pain
Number of years since you developed symptoms of fibromyalgia: only diagnosed fibro last year
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 5-10
Describe the extent of your brain fog: totally unfocused, forgetful, cannot remember a name or word within a minute or two of speaking or hearing it. have trouble remembering what i'm doing at times. i have to "talk" myself through relatively simple tasks at times.
Estimate number of doctors you have seen for Fibro related symptoms: 4
Do your doctors tend to focus on all your Fibro symptoms: Only one did, the one that finally diagnosed me. I was given sleeping meds, lyrica, and cymbalta for symptoms (one rhumotologist said that i did not have fibro). The dr who diagnosed fibro does not believe in a cure. i do. i went to a nutritionist about 25 years ago who (with an impossible diet) "cured" my migraines. I have not have them since. I also did not have any pain. I cant find him now.
Do your doctors treat your symptoms individually or collectively: collectively
Describe your experience with doctors: i totally believe that within the scope of their training and experience they do their best to work with me
What remedies or medications have you tried: a host of which I cannot remember for pain and i now take cymbalta (20 mg) and Lyrica total 75 mg (1 am and 2 pm). i got rid of the sleep med.
What makes you feel better: resting when i need. good night's sleep. exercise (walking) , keeping busy
What makes you feel worse: bad night's sleep or sleeplessness, not exercising, overexertion or extreme use of body (lifting furnitue, being pulled by something i.e. dogs) eating very badly
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: food/toxins are key. i do believe that it can be cured. i also want to get off the meds and hope to get the synaps reconnected in my brain!!!
Are we missing any important questions: sometimes this disease really hits hard without an explanation of why

 

06/19/2009
First Name: Susan
Age: 59
Male or Female: f
City: San Francisco
State/Province: CA
Country: usa
How long have you lived there: 3 years
Where were you born: Detroit, Mi
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: yes
What is Your Line of Work: assistant executive housekeeper
How has Fibro affected your ability to work: It is difficult to do physical labor
How has Fibro affected your life: Exercise is difficult
What were your first symptoms: burning pain over entire body
Your age at onset of symptoms: 49
How fast was your rate of decline: immediate
What are your current symptoms: burning pain after physical work/exercise or cold temps
Number of years since you developed symptoms of fibromyalgia: 10
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: no
Do your doctors treat your symptoms individually or collectively: n/a
Describe your experience with doctors: most have not really listened. not sympathetic. Found a new doctor with kaiser who is understanding
What remedies or medications have you tried: Vicodin, darvon
What makes you feel better: vicodin
What makes you feel worse: no meds
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: no
Have you tried any thyroid specific treatments: no
Your theories or comments: I am interested in this project as my mother was an asthmatic and a patient of Dr. Waldbott. During his early studies of floride he treated my father. He told him to start drinking distilled water instead of our well water to treat his arthritis. This was in the early 60's. After drinking only distilled water and even using this type of water in boiling foods my father's arthritis was gone!!
Are we missing any important questions:

 

06/16/2009
First Name: Kathleen
Age: 45
Male or Female: female
City: Port ,Glasgow United Kingdom
State/Province: United Kingdom
Country: Scotland, United Kingdom
How long have you lived there: 25 years
Where were you born: Greenock, United Kingdom
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: carer in a nursing home for the elderly.
How has Fibro affected your ability to work: It makes it hard to keep going sometimes and I have no stamina. I have to take a day off every 2 monthsor so just to catch up on my sleep.
How has Fibro affected your life: Everything is an effort and I can't do the things I would like to do. If I overdo things, I pay for it later.
What were your first symptoms: Exhaustion,back pain, painfull ribs.
Your age at onset of symptoms: 29 years
How fast was your rate of decline: gradually got worse over the years. Only recently been diagnosed with it.
What are your current symptoms: back pain, painfull ribs,headaches, irritable bowel and bladder, poor quality of sleep,exhaustion, depression
Number of years since you developed symptoms of fibromyalgia: 16
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 10
Describe the extent of your brain fog: unable to think clearly, feeling light headed,I have have the concentration span of a goldfish, confused, trouble finding the correct words.
Estimate number of doctors you have seen for Fibro related symptoms: 1
Do your doctors tend to focus on all your Fibro symptoms: no
Do your doctors treat your symptoms individually or collectively: individually
Describe your experience with doctors: I had been attending my own general practitioner for a number of years with different symptoms. It was only after I read a book about fibromyalgia that I told the doctor I thought this was what I had. He then referred me to the rheumatology clinic.
What remedies or medications have you tried: amitryptiline, citalipram, cocodamol 30/500
What makes you feel better: citalipram, cocodamol only takes the edge off the pain.
What makes you feel worse: amitriryptaline makes me feel groggy
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride: Tap water
Have you made dietary changes to avoid any other neutrotoxins: no
Have you tried any thyroid specific treatments: Put on medication and it settled it. Carbimazole.
Your theories or comments: I think that in general,people don't know enough about it. I felt better when I was dignosed with it, only for the fact that I no longer was made to feel that it was all in my head. IT,s better for me if my friends and colleagues understand how I feel. fun and laughter helps too.
Are we missing any important questions: no

 

06/16/2009
First Name: Denise
Age: 56
Male or Female: Female
City: Spruce Pine
State/Province: NC
Country: United States
How long have you lived there: 56 years
Where were you born: Spruce Pine, NC
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 on disability due to the pain and fatigue as well as brain fog. I had worked as an Office Manager for the same company for 26 years.
How has Fibro affected your life: Don't feel like doing anything. Can barely get out of bed, most days I am unable to clean house or cook
What were your first symptoms: Pain and fatigue
Your age at onset of symptoms: 42
How fast was your rate of decline: Almost overnight
What are your current symptoms: Constant pain and extreme fatigue, bowel problems, anxiety
Number of years since you developed symptoms of fibromyalgia: 14
Do your symptoms include brain fog: Yes
Number of years since you developed the brain fog: 14
Describe the extent of your brain fog: Can't remember what I started to say. Have problems talking to people. Can not do the office work I once did.
Estimate number of doctors you have seen for Fibro related symptoms: 5
Do your doctors tend to focus on all your Fibro symptoms: No
Do your doctors treat your symptoms individually or collectively: Collectively
Describe your experience with doctors: I have had no luck with doctors. It's almost like they don't understand the severity
What remedies or medications have you tried: Effexor,Klonopin, Ultram, Vitamin D, Fish Oil, Flexeril, Amitriptlyne
What makes you feel better: None of them
What makes you feel worse: Can't feel any worse
Have you tried avoiding fluoride in your diet: No
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: No
Have you tried any thyroid specific treatments: Yes I am on thyroid med now
Your theories or comments: I just wish there was a treatment that worked. I want my life back. I want to be the happy person I once was. Fibro has robbed me of that
Are we missing any important questions: No

 

06/13/2009
First Name: Ruth
Age: 58
Male or Female: Female
City: Mesa
State/Province: Arizona
Country: USA
How long have you lived there: 58 years
Where were you born: Arizona
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 on 15 different medications for different reasons. I finally was asked to stop working by my boss after I was not able to complete my work on time & correctly.
How has Fibro affected your life: I used to be very active, now on a good day I am able to get out of bed. still I can only do one maybe two things in a day, this includes taking a shower. It takes me all day to do these one or two things.
What were your first symptoms: pain in right hip
Your age at onset of symptoms: 53
How fast was your rate of decline: first year only hips mostly right; second year left hip worse, left shoulder and neck; third year elbows, right shoulder, wrists, knees.
What are your current symptoms: pain is everywhere, very severe. Even though I am taking 4 different types of pain medications, I can only manage to do one or two tasks in a day, taking all day to complete.
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: 1
Describe the extent of your brain fog: unable to complete a sentence, can't find words, can't concentrate, lose train of thought very quickly
Estimate number of doctors you have seen for Fibro related symptoms: 2
Do your doctors tend to focus on all your Fibro symptoms: usually just pain management
Do your doctors treat your symptoms individually or collectively: collectively
Describe your experience with doctors: they seem frustrated with the amount of pain medication needed and feel that exercise is the cure
What remedies or medications have you tried: all
What makes you feel better: nothing
What makes you feel worse: moving
Have you tried avoiding fluoride in your diet: yes
If so, which sources of fluoride: tap water, pesticides, cleaning fluids
Have you made dietary changes to avoid any other neutrotoxins: I have cut back on microwave use, I am trying to educate myself on what I can do holistically
Have you tried any thyroid specific treatments: I am hypothyroid and take medications for that only
Your theories or comments: I know all of the medications I am taking are killing me. If I don't take them I can't get out of bed at all. So, do I keep taking the drugs and die sooner or stay in bed and cry from the pain.
Are we missing any important questions: Not that I'm aware of

 

06/12/2009
First Name: Karey
Age: 47
Male or Female: Female
City: Orem
State/Province: Utah
Country: United States
How long have you lived there: 5 years
Where were you born: Salt Lake City
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: Author
How has Fibro affected your ability to work: It takes me much longer to write coherently, and there are days at a time when I can't work
How has Fibro affected your life: Limits social activities, ability to cook, clean, keep house, limits my endurance for sexual activity,
What were your first symptoms: (1978) Possibley: Achy legs in high school (2007) Immediate adverse reaction to painting master bedroom. Sore throat and bed-ridden with fatigue for three days. Couldn't get up to eat and went without food.
Your age at onset of symptoms: 17 (possibly), 45 (definitely)
How fast was your rate of decline: Immediate.
What are your current symptoms: Fatigue, muscle pain in between neck and knees. Fuzzy thinking.
Number of years since you developed symptoms of fibromyalgia: 2
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 2
Describe the extent of your brain fog: Can't think of words, write the same words over and over when writing my novel and have to go back and re-do, sometimes brain just stops and I can't think, period!
Estimate number of doctors you have seen for Fibro related symptoms: 2
Do your doctors tend to focus on all your Fibro symptoms: No
Do your doctors treat your symptoms individually or collectively: Collectively
Describe your experience with doctors: I'm in a drug study at a fatigue clinic and without the medication, I wouldn't have been able to function the last year. However, the two doctors I've spoken with don't want to talk about anything beyond medication.
What remedies or medications have you tried: Milnacipran, Low-dose Naltrexone, lots of magnesium salt baths, magnesium citrate, calcium citrate, Vitamin D, regular sleep, iron, etc.
What makes you feel better: Hot epsom salt baths, massage which I get rarely, drinking Ionic Fizz (magnesium citrate), human touch
What makes you feel worse: Arguing or being yelled at, extreme physical exertion, irregular sleep patterns,
Have you tried avoiding fluoride in your diet: yes
If so, which sources of fluoride: tap water as a child
Have you made dietary changes to avoid any other neutrotoxins: No tuna or large fish
Have you tried any thyroid specific treatments: Been tested for T3 and T4. Negative.
Your theories or comments: One of my theories is that Fibromyalgia is possibly related to governmental chemical testing using mycoplasmas. My identical twin sister and I both had chronic fatigue and leg aches in high school and couldn't function after coming home from school. Twenty three years later, we both came down with symptoms of FMS and CFIDS after being exposed to paint fumes, Our symptoms were identical: Sore throat, bed-ridden for a couple of years. I wonder whether we were genetically predisposed to have the mycoplasma (which had possibly lain dormant since high school), be triggered by an environmental trigger, which in our case turned out to be paint fumes. My other theory is that Fibrymyalgia is a rheumatoid condition that is directly related to sleep patterns and the inability to slip into the deepest, restorative phase of sleep. Low-dose Naltrexone has the side-effect of causing dreams. Since taking it, I am dreaming and waking up much more refreshed.
Are we missing any important questions: Do you dream at night? Are you getting regular sleep? What time do you go to bed and wake up?

 

06/09/2009
First Name: Michael
Age: 56
Male or Female: Male
City: Lyndonville
State/Province: Vermont
Country: USA
How long have you lived there: 35
Where were you born: Miami, FLA
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: Sales
How has Fibro affected your ability to work: First I had disability(private) for neck surgery, could not work then developed severe Fibro
How has Fibro affected your life: on a 1-10 about an eight to the negative
What were your first symptoms: joint pain fatigue leaky gut sleep disorder severe sleep apnea, neck pain, back pain, all over pain, muscle3 pain, pinky pain, no life pain
Your age at onset of symptoms: 53 a year after neck surgery for DDD spinal stenosis
How fast was your rate of decline: not fast, somewhat gradual, looking back it really has been 5 years coming.
What are your current symptoms: alphabet from A to Z, it would be easier to exclude what I don't have for symptoms
Number of years since you developed symptoms of fibromyalgia: about three
Do your symptoms include brain fog: Big Time
Number of years since you developed the brain fog: Three
Describe the extent of your brain fog: I have compensated so it is subjective, if I woke up three years as I am today I would say full blown but I cope and I wax and I wane
Estimate number of doctors you have seen for Fibro related symptoms: 10-15 (too many)
Do your doctors tend to focus on all your Fibro symptoms: impossible, it's like a do not open box
Do your doctors treat your symptoms individually or collectively: was individual, you know the chase with nothing there to collectively, yeah well
Describe your experience with doctors: Sympathethetic but woefully unprepared or trained to Doctor this specialty, the Rheumy's have all the source knowledge but diddn't go to school to treat whiney people who don't get better
What remedies or medications have you tried: I take methadone for pain, and cymbalta for pain, 1200 mg gabapentin, clonazepam to sleep
What makes you feel better: narcotics ( I don't make dopamine) it's all hypothalmus and endocrine system
What makes you feel worse: narcotics, fatigue, fatigue, pain & pain and more pain
Have you tried avoiding fluoride in your diet: yes
If so, which sources of fluoride: all
Have you made dietary changes to avoid any other neutrotoxins: I am just begining to get wise to nutriition and neutraceuticals
Have you tried any thyroid specific treatments: no/ thryoid supposedly normal at 1.53
Your theories or comments: Myalgic Encephalomyelitus an organic brain disease based on an entovirus, never seen a shrink who can treat that part of it, depression or exhaustion (I am sleep deprived) looks just like depression I even slur words which makes them think I am over medicated and to find out it was lack of sleep
Are we missing any important questions: not really, there is no system to fix so you can't even call the medical sytem broke. We are all really sick and are treated like lepers, a nice Hawain Island would be good for us. Cold kills me, heat burns me, it is a hard row to Hoe!

 

06/08/2009
First Name: sheila
Age: 39
Male or Female: female
City: chickasha
State/Province: oklahoma
Country: united states
How long have you lived there: 39 yrs
Where were you born: chickasha
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: Can't sit or stand long periods at a time. Alot of pain in neck and shoulders.
What were your first symptoms: Fatigue by not being able to sleep
Your age at onset of symptoms: 30
How fast was your rate of decline: Fast
What are your current symptoms: Pain and sleeping problems
Number of years since you developed symptoms of fibromyalgia: 10
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 5
Describe the extent of your brain fog: I am always loosing things and forget things
Estimate number of doctors you have seen for Fibro related symptoms: 3
Do your doctors tend to focus on all your Fibro symptoms: yes
Do your doctors treat your symptoms individually or collectively: individually
Describe your experience with doctors: When through several doctors for about a year before finding a good one
What remedies or medications have you tried: gabapentin, flexeril, propoxy
What makes you feel better: Getting a good nights sleep.
What makes you feel worse: Not sleeping and changes in the 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:
Are we missing any important questions:

 

06/07/2009
First Name: Shana
Age: 30
Male or Female: Female
City: Vashon
State/Province: Wa
Country: USA
How long have you lived there: 3yrs
Where were you born: Scotland, Uk
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: yes
What is Your Line of Work: student/carpenter
How has Fibro affected your ability to work: It has made me work slower, live in pain, and do less.
How has Fibro affected your life: Yes, I have gained weight because I cannot get as much exercise. It makes me depressed and feel like I will not be able to do what I wanted to with my life.
What were your first symptoms: pain in hip/knee
Your age at onset of symptoms: 28
How fast was your rate of decline: fairly fast
What are your current symptoms: pain in hip/knee. tiredness. skin rashes, and sensitivities to heat. Depression
Number of years since you developed symptoms of fibromyalgia: 1.5
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: I don't know...1.5-3+?
Describe the extent of your brain fog: I feel tired when I wake up. I am tired throughout the day.
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: Individually
Describe your experience with doctors: Mostly they don't know what to say about the tests that come back negative. I get very frustrated. I give up and then go back when the pain gets too bad to handle.
What remedies or medications have you tried: St. John's wort. Counciling, physical therapy, chiropractic, tylenol, advil, exercise, acupuncture, vitamin D
What makes you feel better: Not much. Warm water, a bath or shower.
What makes you feel worse: Hiking/running. 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 eat mostly organic and home grown food.
Have you tried any thyroid specific treatments: no
Your theories or comments:
Are we missing any important questions:

 

06/06/2009
First Name: Susan
Age: 46
Male or Female: Female
City: Ringgold
State/Province: GA
Country: USA
How long have you lived there: 14 years
Where were you born: Cinncinati Ohio USA
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: Computer Analyst
How has Fibro affected your ability to work: YES!
How has Fibro affected your life: I have 3 children 13, 10 and 6. I have a very difficult time taking care of them and our home because I am in such pain and fatigue
What were your first symptoms: July 1993 Severe flu like illness
Your age at onset of symptoms: 30
How fast was your rate of decline: Immediate. Viral Illness that never subsided
What are your current symptoms: Severe flare at the moment, Pain, fatigue, imsomnia, brain fog, memory deficits
Number of years since you developed symptoms of fibromyalgia: 16
Do your symptoms include brain fog: Yes
Number of years since you developed the brain fog: It has become progressively worse over the years
Describe the extent of your brain fog: Have friends recount conversations and event that I have no recollection. Severe Executive function issues. Difficulty communicating with my husband and children
Estimate number of doctors you have seen for Fibro related symptoms: 6
Do your doctors tend to focus on all your Fibro symptoms: Not all. Some are great but can no longer go to them as lost insurance.
Do your doctors treat your symptoms individually or collectively:
Describe your experience with doctors:
What remedies or medications have you tried:
What makes you feel better: Eliminating ALL starch - even whole grains. Eliminating ALL dairy. All sugar. Only eat meat, eggs, vegetables and fruit, No fruit juice
What makes you feel worse: SUGAR! Wheat
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:
Have you tried any thyroid specific treatments: Armour
Your theories or comments:
Are we missing any important questions: Incidence of Celiac. I am considering asking for testing for celiac. Just learned from my mother that my paternal grandmother had celiac....

 

06/05/2009
First Name: Stephinee
Age: 17
Male or Female: Female
City: Three Forks
State/Province: Montana
Country: US
How long have you lived there: 17 years
Where were you born: Bozeman, 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: Waitressing
How has Fibro affected your ability to work: It makes work difficult and its hard to be happy while in pain.
How has Fibro affected your life: I am not very active anymore.
What were your first symptoms: Muscle pains
Your age at onset of symptoms: 14
How fast was your rate of decline: Sudden
What are your current symptoms: Pain, lack of sleep, lack of focus
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: 1
Describe the extent of your brain fog: i forget a lot now than ever before
Estimate number of doctors you have seen for Fibro related symptoms: 2
Do your doctors tend to focus on all your Fibro symptoms: no
Do your doctors treat your symptoms individually or collectively: individually
Describe your experience with doctors: They dont know much.
What remedies or medications have you tried: Muscle Relaxers and pain relievers
What makes you feel better: nothing
What makes you feel worse: Everyhting
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:

 

06/04/2009
First Name: Jenny
Age: 26
Male or Female: Female
City: Memphis
State/Province: TN
Country: USA
How long have you lived there: 23 years
Where were you born: Katy, 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: housecleaning
How has Fibro affected your ability to work: yes
How has Fibro affected your life: i have low energy all the time, pain 75% of the time, migraines, etc... so I rarely feel up to doing "normal" daily activities.
What were your first symptoms: migraines and nausea almost daily. abdominal pain. stomach problems.
Your age at onset of symptoms: 25
How fast was your rate of decline: not sure yet...
What are your current symptoms: migraines. fatigue. gerd. abdominal pain. lightheadedness. breast pain. muscle aches, soreness, and tenseness throughout body. pain behind my knees. anxiety.
Number of years since you developed symptoms of fibromyalgia: 1
Do your symptoms include brain fog: no
Number of years since you developed the brain fog:
Describe the extent of your brain fog: rarely happens.
Estimate number of doctors you have seen for Fibro related symptoms: 3
Do your doctors tend to focus on all your Fibro symptoms: no.
Do your doctors treat your symptoms individually or collectively: individually.
Describe your experience with doctors: all of my test results are fairly normal, so all the doctors say that nothing is seriously wrong with me. while i have been told by one doctor that i have all the symptoms of fibro, he told me he doesn't want to diagnose me with fibro yet and would rather try to treat all the symptoms individually. my regular doctor doesn't seem to think my pain is that big of a deal.
What remedies or medications have you tried: vitamins with iron. apple cider vinegar. eating healthy. advil. advil migraine. lortab. cymbalta. protonix. klonopin. therapy.
What makes you feel better: protonix. advil migraine. lortab. heat. walking.
What makes you feel worse: weather. stress. any strenuous physical activity.
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: not for any ling amount of time.
Have you tried any thyroid specific treatments: no.
Your theories or comments: i'd love to find out why i have this and what i can do to feel better. thanks!
Are we missing any important questions:

 

06/02/2009
First Name: Lubna
Age: 47
Male or Female: female
City: Toronto
State/Province: Ontario
Country: Canada
How long have you lived there: 30 years
Where were you born: Pakistan
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: Manage a retail business
How has Fibro affected your ability to work: I have worked continuously except for a three year break. It has been extremely hard!!!!
How has Fibro affected your life: Diminished enjoyment from all activities!! I do everything I need to do but don't feel like I'm really living.
What were your first symptoms: burning pain in extremities
Your age at onset of symptoms: 28
How fast was your rate of decline: very quickly declined...all aspects were effected..pain was first I think...than the fatigue
What are your current symptoms: pain is severe most of the time...everywhere, neck, shoulder blades, lower legs, arms, hands..fatigue in upper body is really bad. TMJ as well
Number of years since you developed symptoms of fibromyalgia: 19 years
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: around 15
Describe the extent of your brain fog: don't have much focus...try so much to make priorities for myself..but lose sight of them
Estimate number of doctors you have seen for Fibro related symptoms: 3
Do your doctors tend to focus on all your Fibro symptoms: they tried to address some...haven't seen any doctor for this in maybe 10 years!
Do your doctors treat your symptoms individually or collectively:
Describe your experience with doctors: I think my family doctor viewed me as someone maybe "lazy" wanting to get out of work....as I only really went to see him to get a note to cover days off from work. When in actuality I just didn't see much point in trying to seek help for something I knew he didn't understand
What remedies or medications have you tried: Initially was given antibiotics, sleeping pills
What makes you feel better: nothing really as yet...my determination to not "give in" and my need for independence are all that keep me going
What makes you feel worse: lately it's everything...can't even hold a pen to write for more than a few minutes
Have you tried avoiding fluoride in your diet: no...but definitely going to give this a try
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: no
Have you tried any thyroid specific treatments: no
Your theories or comments: It's interesting to me that so many cases erupted in the early 80's...has to mean something...the fluoride factor definitely seems like a contributor.
Are we missing any important questions:

 

06/02/2009
First Name: celeste
Age: 32
Male or Female: female
City: manchester
State/Province: ohio
Country: usa
How long have you lived there: 22 years
Where were you born: ohio
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: no
What is Your Line of Work: n/a
How has Fibro affected your ability to work: cant work
How has Fibro affected your life: i dont have a life anymore,everything i enjoyed i cant do.i cant even clean my house anymore.
What were your first symptoms: shoulderand neck pain,feeling tired
Your age at onset of symptoms: 27
How fast was your rate of decline:
What are your current symptoms: pain everywhere ,stiffness,constantly feeling tired,hands dont work right,cant think of things like i used to
Number of years since you developed symptoms of fibromyalgia: 6
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 3
Describe the extent of your brain fog: forget to take meds. ,dates 4 app. how to spell words
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: they think its all in my head, took years before they finally belive there is somthing wrong with me.and they r still not listening to me or helping my pain.
What remedies or medications have you tried: neurotin,lyrica.flexoril,amrix
What makes you feel better: lyrica helps a little
What makes you feel worse: any kind of movement, rain
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: no
Have you tried any thyroid specific treatments: no
Your theories or comments:
Are we missing any important questions: if anyone elese in your family has fibro

 

06/02/2009
First Name: AJ
Age: 35
Male or Female: M
City: Winnipeg
State/Province: Manitoba
Country: Canada
How long have you lived there: 35 years
Where were you born: Thunder Bay, Ontario, Canada
Is this the first time you have taken our questionnaire: Yes
If not, why are you returning:
Are you still working: No
What is Your Line of Work: Windows Maker
How has Fibro affected your ability to work: Muscles always sore, can't last long before I need to lie down and rest, Mental troubles, desparate need to sleep or rest in bed.
How has Fibro affected your life: Once was very healthy and strong, now I just try to survive day to day.
What were your first symptoms: Fatigue, restlessness, trouble sleeping, couldn't run/jog well anymore
Your age at onset of symptoms: 15
How fast was your rate of decline: Immediate (over the winter of 1987-88)
What are your current symptoms: Sore muscles, poor endurance, joint trouble, trouble thinking clearly, trouble urinating (specialist dound no cause),ibs (bowel problems - solved by change of diet - no msg and milk).
Number of years since you developed symptoms of fibromyalgia: 21
Do your symptoms include brain fog: Yes
Number of years since you developed the brain fog: As long as i can remember
Describe the extent of your brain fog: Effects me all the time, forget things, even my name at times.
Estimate number of doctors you have seen for Fibro related symptoms: 5
Do your doctors tend to focus on all your Fibro symptoms: None,except specialist last year who diagnosed fms.
Do your doctors treat your symptoms individually or collectively: My doctor (family doctor) doesn't treat the illness, just tells me to exercise.
Describe your experience with doctors: Family doctors never took me seriously, and present one doesn't either. Didn't believe me when I suggested Chronic Fatigue Syndrome might be the trouble (before seeing specialist in 2008).
What remedies or medications have you tried: Drinking more water. Colon/organ cleanse
What makes you feel better: Both help, but difficulties with urination keep me from drinking more water.
What makes you feel worse: Trouble urinating is difficult and sometimes painful.
Have you tried avoiding fluoride in your diet: No
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: No
Have you tried any thyroid specific treatments: No
Your theories or comments:
Are we missing any important questions:

 

06/02/2009
First Name: Sophie
Age: 50
Male or Female: female
City: barnaget
State/Province: nj
Country: usa
How long have you lived there: 20 years
Where were you born: Camden, NJ
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: Waitress.
How has Fibro affected your ability to work: Some mornings I can barely walk. Don't feel strong any more.
How has Fibro affected your life: I pretend I'm ok around others. Won't let it get me down. Some days I feel like I'm in slow-motion.
What were your first symptoms: Numb hands, stomache problems, achiness all over, like the flu.
Your age at onset of symptoms: 44
How fast was your rate of decline: Symptoms are progressively worse every year. I do yoga now and eat properly, no sugar, etc. I just keep going.
What are your current symptoms: gastro, pain all over,extreme fatigue, trouble sleeping, numbness in hands, feverish.
Number of years since you developed symptoms of fibromyalgia: approx. 6 years
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 1 year
Describe the extent of your brain fog: Some days really forgetful, no concentration.
Estimate number of doctors you have seen for Fibro related symptoms: 2
Do your doctors tend to focus on all your Fibro symptoms: My MD has been very positive. Surprised he believes in Fibr.
Do your doctors treat your symptoms individually or collectively: Collectively. He has tested me for other illnesses, such as Lupus and Lyme.
Describe your experience with doctors: Don't want to take pharmacuticals. However, dr. is willing to try various medicines to see what helps. I quit the nortryptaline. Currently only take ibuprofen to get by.
What remedies or medications have you tried: Vioxx, antidepressants, advil, aspirin.
What makes you feel better: Ibuprofin helps.
What makes you feel worse: Don't know what triggers it. It just comes on so strong sometimes. Achey every day. Somedays feels like I'm getting the Flu.
Have you tried avoiding fluoride in your diet: yes
If so, which sources of fluoride: didn't know about flouride in prescriptions. Am aware of flouride poisoning.
Have you made dietary changes to avoid any other neutrotoxins: fresh, unprocessed foods. Vitamins and lots of well water.
Have you tried any thyroid specific treatments: no
Your theories or comments: I grew up near a few nasty polluting factories back in the 60's. The fumes would send us inside with upset stomaches. I am convinced there is some connection.
Are we missing any important questions: Does other family members have it. My sister is chronic. My best friend & her two sisters have it. We all grew up on the same street.

 

06/01/2009
First Name: Jeanine
Age: 42
Male or Female: female
City: Utica
State/Province: NY
Country: United States of America
How long have you lived there: 24 yrs
Where were you born: Rome, NY
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: no
What is Your Line of Work:
How has Fibro affected your ability to work: cramping, aching, fatigue, generalized pain (and anxiety) have made me unable to work.
How has Fibro affected your life: It is excruciating in the cold months, often I am in so much pain I cannot sleep, and stiff in the morning and need a hot tub of wter drawn to soak in before I can function. Tired almost all the time.
What were your first symptoms: Feet cramping so that I couldn' walk on them hardly & leg spasms when at rest.
Your age at onset of symptoms: 33 yrs.
How fast was your rate of decline: Gradually, not diagnosed until I was 35 yrs.
What are your current symptoms: cramping of wrists, feet, & chest. Ancles & wrists ache and throb terribly. Stiffness everywhere especially my neck. Very tender, hurts to be touched with little pressure. pain threshold very low. Poor sleep makes me even worse. Cold weather makes everything hurt more!
Number of years since you developed symptoms of fibromyalgia: nearing 11 yrs.
Do your symptoms include brain fog: yes/other possible causes.
Number of years since you developed the brain fog: 9 yrs/ alot of medications, memory loss.
Describe the extent of your brain fog: Nausia, causes complete fogging, until I vomit, then it disapates. Not sure how to answer this question.
Estimate number of doctors you have seen for Fibro related symptoms: 3
Do your doctors tend to focus on all your Fibro symptoms: 1 specialist did, current one is my primary and prescribs meds and consults 1 st one (specialist)if needed.
Do your doctors treat your symptoms individually or collectively: Individually I think.
Describe your experience with doctors: Specialist good, aqua therapy, physical therapy very difficult, and back maessage excellent. Doc said massage temp fix, not long term like aqua therapy. Too cold out for me to go to these therapies, have to suffer the winter and cold to get there and leave for home wet. so i don't go.
What remedies or medications have you tried: Mobic, Tylenol 3 with codene, when i wasn't on mobic, i took ibuprophen. multivitamin with minerals, supposed to help the leg spasms. Flexeral.
What makes you feel better: hot water, pain pills, massage, i think walking helps too. ambien puts me out of my misery.
What makes you feel worse: cold, lack of sleep, stress sometimes(depressin) makes me focus more on the pain.
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: i don't think so.
Have you tried any thyroid specific treatments: I take synthroid.
Your theories or comments: Insurance should pay for hot tubs in home for exercise, strength and flexability. Especially, for cold winter prone locations. I am not sure what causes fibromyalgia, but I think it is stress related, began at a very low point in my life of depression and stress.
Are we missing any important questions: Why is massage not covered under most insurances. They only would alow mineif had pulled a muscle, which happens somewhat frequently.

 

 

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