Fibromyalgia Questionnaire & Results

Latest Update: 11/20/2009

If you suffer from the widely misunderstood, crippling condition known as Fibromyalgia and would like to anonymously share some of the details of your experience, please take time to answer our QUESTIONNAIRE!

While even many physicians tend to associate Fibromyalgia only with extreme muscle pain & stiffness, the chronic condition includes a long list of symptoms, many of which are severely debilitating. Cognitive difficulties, widespread joint pain, extreme fatigue, gastrointestinal problems and thyroid dysfunction, all play a major role in the crippling nature of Fibromyalgia.

SHARING INFORMATION & EXPERIENCES
The information that you share with us in our questionnaire is summarized in an effort to help those suffering from this disturbing disorder.

Our SUMMARY OF QUESTIONNAIRES is a great way to explore some of best, uncensored advice and feedback that we have received from the more than 820 people that have already responded to our questionnaire!

Here are just two examples of the kind of important feedback you have given us so far...

Cognitive dysfunction, which ranges from concentration & short-term memory problems to brain fog (that borders on dementia in the most severe cases), is a symptom shared by over 93% of those that have completed our questionnaire. And yet, shockingly, many respondents indicate their doctors still don’t even know this symptom is associated with Fibromyalgia!

Similarly, while growing evidence speaks to a link between fibromyalgia and thyroid dysfunction, many in the medical community are unaware of this seemingly important connection. Nevertheless, without even asking a specific question in our survey on thyroid dysfunction, it was impossible to ignore the thyroid problems that are so commonly associated with Fibromyalgia.

Learn about Fibromyalgia directly from those who suffer from the condition!

1   What advice do they have?
2   What initial symptoms do they share?
3   How do their symptoms advance?
4   What are their theories and comments on the condition?
5   What treatments do they suggest?
6   How debilitating are their symptoms during the various stages?
7   How are they treated by physicians, as one symptom after the next slowly emerge?

Please note, the author of "The Cause of Fibromyalgia" has been most generous with Earth Clinic and has helped us compile all of our questionnaires between 2005-2008. We are so grateful for the brilliant, pro bono work he has done on this project.

THANK YOU SO MUCH TO EVERYONE WHO TOOK THE TIME TO ANSWER OUR QUESTIONNAIRE!

EXPLORING QUESTIONNAIRES, BY PERSON
We have added a second tab to our SUMMARY OF QUESTIONNAIRES to help you locate the questionnaire of each respondent. Thus, if you find some information provided by a specific person that you find particularly useful, you can quickly find the answers they provided to the rest of the questions in our archives, below.

27 QUESTIONNAIRE COMPLETED DATA FORMS FOR November 2009

11/20/2009

First Name: B.
Age: 65
Male or Female: Female
City: Ajijic
State/Province: Jalisco
Country: Mexico
How long have you lived there: 3 years
Where were you born: Lubbock, 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: Real Estate
How has Fibro affected your ability to work: I just push myself and do not give into the disease.
How has Fibro affected your life: Makes me an irritable person
What were your first symptoms: Muscle spasms in hands, feet, rib area, back, sever recurring headaches
Your age at onset of symptoms: 57
How fast was your rate of decline: not to fast
What are your current symptoms: the same, mostly the muscle spasms in my limbs
Number of years since you developed symptoms of fibromyalgia: 8
Do your symptoms include brain fog: no
Number of years since you developed the brain fog:
Describe the extent of your brain fog:
Estimate number of doctors you have seen for Fibro related symptoms: 6
Do your doctors tend to focus on all your Fibro symptoms: no
Do your doctors treat your symptoms individually or collectively: they don't
Describe your experience with doctors: They thought I was nuts when I described the symptoms and that nothing was wrong with me.
What remedies or medications have you tried: More sleep
What makes you feel better: Clonosipan
What makes you feel worse: No 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: never
Your theories or comments: I was just recently diagnosed with fibro, so I have no theories, except that doctors do not understand it for the most part
Are we missing any important questions: I don't know, I'm new at this

11/19/2009
First Name: Barbara
Age: 50
Male or Female: female
City: Northampton
State/Province: Northamptonshire
Country: England
How long have you lived there: 10 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: Banker
How has Fibro affected your ability to work: Chronic tiredness inability to carry anything or do repetative tasks more than 3 times without having to rest
How has Fibro affected your life: I cannot manage to carry out my own care for my cleanliness or do household chores or shop or cook/prepare food
What were your first symptoms: gradual inability to drive without having to rest before getting out of the car or carry a handbag
Your age at onset of symptoms: 41
How fast was your rate of decline: very gradual
What are your current symptoms: severe pain and fatigue brain fog prickly abdomen my legs let me down
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: 4
Describe the extent of your brain fog: unable to concentrate for more than 10 seconds then I forget what I was thinking,talk out loud so that I can carry out small tasks like making a cup of tea
Estimate number of doctors you have seen for Fibro related symptoms: 11 doctors/consultants
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: 9 of them failed to recognise what I was suffering from so I changed practices and was diagnosed and referred to a rhumatolagist within 3 months
What remedies or medications have you tried: gabapentin
What makes you feel better: nothing
What makes you feel worse: when people say I look well!
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: vegan organic diet and filtered water no caffine
Have you tried any thyroid specific treatments: no
Your theories or comments: having been a single parent for 17 years and undergone 10 operations I feel my body has used up an awful lot of adrenaline and healing fluid to cope with running a home being mum and dad to 3 kids and working full time I was sexually abused as a young child
Are we missing any important questions: yes you don't mention childbirth and weather they were natural or not I think this has a bearing on more women than men having fibro

11/18/2009
First Name: jackie
Age: 53
Male or Female: female
City: london
State/Province: England
Country: england
How long have you lived there: 30 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: secretary
How has Fibro affected your ability to work: memory lapses pain tiredness
How has Fibro affected your life: always in pain. dont go out. tired alot.
What were your first symptoms: back problems, and right thigh, hip.
Your age at onset of symptoms: originally about 35
How fast was your rate of decline: recently very fast within 6 months to a year
What are your current symptoms: pain in feet, tingling, back pain, spasms, tiredness, fog, anger, depression
Number of years since you developed symptoms of fibromyalgia: possibly many but only diagnosed in last year
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 1
Describe the extent of your brain fog: varies, but up to 10 minutes at a time. Forget something ten minutes later.Pans burnt, missed appointments.
Estimate number of doctors you have seen for Fibro related symptoms: about 4
Do your doctors tend to focus on all your Fibro symptoms: no
Do your doctors treat your symptoms individually or collectively: sent to different doctors for different things.
Describe your experience with doctors: Many not heard of fibromyalgia. Do not listen when I try to ask if new sympton is related. Generally a lot of disbelief.
What remedies or medications have you tried: antidepressants - citalipram. diclofenac, ibuprofen
What makes you feel better: hot baths, diclofenac for spasms, nothing for foot pain or upper back pain.
What makes you feel worse: People not believing you or thinking you are exaggerating
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 - tests for thyroid function were normal
Your theories or comments: I believe that much is hormone related as I had huge hormone surge when this really kicked in. I have always believed that chemicals can affect therefore water is big possibility. I used to drink wine but was seriously affected including wheals etc so again chemicals and stress.
Are we missing any important questions: asking if anyone has tried any natural cures that have really worked. I think medicine possibly aggravates because most doctors dont really know what is causing the problems in the first place.

11/18/2009
First Name: kathy
Age: 62
Male or Female: f
City: san dieo
State/Province: ca
Country: usa
How long have you lived there: 62 yrs
Where were you born: riveride,ca
Is this the first time you have taken our questionnaire: yes
If not, why are you returning: na
Are you still working: y
What is Your Line of Work: suprvisor
How has Fibro affected your ability to work: yes
How has Fibro affected your life: fatigue chronic pain and stiffness and brain fog
What were your first symptoms: fatigue generalized pain
Your age at onset of symptoms: 53
How fast was your rate of decline: 4yrs
What are your current symptoms: generalized pain, stiffness, fatigue, brain fog
Number of years since you developed symptoms of fibromyalgia: 6 yrs
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 4 yrs
Describe the extent of your brain fog: confusion, unable to understand simple instructions, not getting things done in a timely manner
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: both
Describe your experience with doctors: excellent
What remedies or medications have you tried: ultram er and trigger point injections
What makes you feel better: the above and rest
What makes you feel worse: work or extending
Have you tried avoiding fluoride in your diet: yes
If so, which sources of fluoride: nonethat i know of
Have you made dietary changes to avoid any other neutrotoxins: not sure
Have you tried any thyroid specific treatments: yes
Your theories or comments: fibro brought on after cervical trauma
Are we missing any important questions: no

11/18/2009
First Name: Paige
Age: 17
Male or Female: Female
City: Stow
State/Province: Massachusetts
Country: United States
How long have you lived there: 17 years
Where were you born: United States
Is this the first time you have taken our questionnaire: Yes
If not, why are you returning:
Are you still working: Yes, Student
What is Your Line of Work: High School
How has Fibro affected your ability to work:
How has Fibro affected your life: Decreased socilazation, lost many friends, rarely able to attend school.
What were your first symptoms: Fatigue, muscle ache, depression, stomach pain
Your age at onset of symptoms: 11 - 13
How fast was your rate of decline: Slowly around 2 - 5 years.
What are your current symptoms: Body pain, headaches, fatigue, anxiety, chest pain, stomach pain
Number of years since you developed symptoms of fibromyalgia: 4 - 5 years
Do your symptoms include brain fog: No
Number of years since you developed the brain fog:
Describe the extent of your brain fog:
Estimate number of doctors you have seen for Fibro related symptoms: Around 20
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: Most doctors can't do anything for me and recommend me to a different doctor or specialist.
What remedies or medications have you tried: Prozac, Lyrica, Cymbalta, Seroquel
What makes you feel better: Klonopin, sleep
What makes you feel worse: Stress, over exerting myself
Have you tried avoiding fluoride in your diet: No
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins:
Have you tried any thyroid specific treatments: No
Your theories or comments:
Are we missing any important questions:

11/17/2009
First Name: Pamela
Age: 45
Male or Female: female
City: Candler
State/Province: NC
Country: USA
How long have you lived there: 2 years
Where were you born: Asheville 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 was diagnosed 16 years ago while working as a nurse. Within 9 months, I had to stop working.
How has Fibro affected your life: I cannot do the things I want to with my husband and kids. Several days a week I have to stay in bed just to be able to barely function the other days.
What were your first symptoms: severe flu like symptoms with inability to concentrate
Your age at onset of symptoms: 27
How fast was your rate of decline: very quickly I was unable to work
What are your current symptoms: severe muscle aches esp in neck and arms,inability to concentrate and reason
Number of years since you developed symptoms of fibromyalgia: 16 years
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 16 years
Describe the extent of your brain fog: I cannot concentrate and when needing to make a decision of any kind I find it very hard to reason and make a good decision
Estimate number of doctors you have seen for Fibro related symptoms: 2
Do your doctors tend to focus on all your Fibro symptoms: yes,my doctor is a specialist in fibro
Do your doctors treat your symptoms individually or collectively: collectively
Describe your experience with doctors: fairly good
What remedies or medications have you tried: lodine helps the pain sometimes. Tried antidepressants but they made too sleepy. Tried all kinds of supplements and alternative meds. all that ever helped even a little was the chiropractor
What makes you feel better:
What makes you feel worse:
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: no
Have you tried any thyroid specific treatments: no
Your theories or comments:
Are we missing any important questions:

11/16/2009
First Name: Bec
Age: 50
Male or Female: female
City: johnson city
State/Province: tn
Country: usa
How long have you lived there: ! + 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: Banking
How has Fibro affected your ability to work: Out of work for other reasons
How has Fibro affected your life: Brain fog, tired all the time, muscle pain in hips, elbows, knees, neck shoulders.
What were your first symptoms: 1989
Your age at onset of symptoms: 30
How fast was your rate of decline: progressive over last 20 tears
What are your current symptoms: pain, brain fog, tight muscles, tendons, ligaments. tired all the time
Number of years since you developed symptoms of fibromyalgia: 20
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 5
Describe the extent of your brain fog: hard to remember basic things, can be argumentative like never prior, hard tiome concentrating,
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: collectivly
Describe your experience with doctors: ok
What remedies or medications have you tried: cymbalta, ibuprofen, aleve
What makes you feel better: the above, massage, naps, swimming
What makes you feel worse: running, walking, elipptical machine, lifting weights
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride: n/a
Have you made dietary changes to avoid any other neutrotoxins: no
Have you tried any thyroid specific treatments: no
Your theories or comments: if I reduce any one of the above I suffer and only want to be in bed all day. Most people cannot fathom how dibilitating the condition is!
Are we missing any important questions:

11/13/2009
First Name: Natalie
Age: 50
Male or Female: female
City: Yokosuka
State/Province: Kanagawa
Country: Japan
How long have you lived there: 18 months
Where were you born: North Carolina
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: ESL Instructor
How has Fibro affected your ability to work: currently only part time
How has Fibro affected your life: I have had a substantial weight gain, become sedentary, have to limit what I can do each day or I will pay for it, weather sensitive, avoid small children, just all around not as active or involved as I once was in life.
What were your first symptoms: sensitive areas of the upper arms and inside thighs and knees
Your age at onset of symptoms: 46
How fast was your rate of decline: quickly, I seemed to have the symptoms after a severe reaction to Topamax, I was taking for migraines associated with menapause. After that I had a hysterectomy and surgery for kidney stones. I also injured my back and had 5 weeks of physical therapy. It got really bad after I got a new boss. he made life miserable for all of us. My doc said the stress was making it worse, so I interviewed and found another better job and things got better. Decline was fast, but i have ups and downs; good weeks and bad. The tender areas also migrate and sometimes include my shoulders and buttocks. My back is usually ok as are my lower arms.
What are your current symptoms: fatigue, bruised sensations in the tissue of my upper arms, hips, thighs and legs. At its worst the pain goes through a cycle of bruised feelings to burning like a bad sunburn to itching and through the cycle again. It's been a while since that has happened. I have trouble focusing on teaching tasks or research. IBS, restless legs, sleep disturbance,
Number of years since you developed symptoms of fibromyalgia: four
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: I can't remember when it started exactly, maybe three.
Describe the extent of your brain fog: My increasing lack of focus was brought to my attention by family about three years ago. My daughter says I'm ADHD and easily distracted. It has afffected my work, but I try to covr it up. I'm not nearly as sharp as I used to be and I don't think it's just my age either.
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: It has varied. It began as treating individual symptoms because that doctor wanted to divide my "ailments" up into different office visits. The next doctor was quicker to diagnose and begin a treatment which was marginally effective. The last doctor is exploring alternative approaches because I'm sensitive to medications such as cymbalta and lyrica.
Describe your experience with doctors: Better than I expected. No one has denied that I'm in chronic debilitating pain. they have been patient and helped me research everything we can find out about it. I give them feed back and they make suggestions. I honestly thought they would say it was all in my head and try to put me on an antidepressant, so I avoided talking about it for a while. I was in self denial for months about the diagnosis. I thought "this is what they tell you you have if they can't find anything else." Partly true, but it is a real thing and knowing that helps some.
What remedies or medications have you tried: Lyrica and Cymbalta. I talk celebrex for my arthritis and I think that helps dull the aches some. I also talk extra strength Tylenol when I need it.
What makes you feel better: I'm in Japan and have the luxury of having an ofuro - deep soaking tub that can reheat and circulate water. Better than a hot tub. My doctor has me soaking once or twice a day. Exercising is really the best, but I can't do too much or that makes me hurt. I feel the burn before I've done anything. I swim 500 meters breast stroke three days a week and fifteen minutes water aerobics after each swim. I try to walk on the beach at least twice a week. these things help me stay a little active. At my doctor's suggestion, I'm having a Fibro massage once a week for thirty minutes. Surprisingly, this is really helping. I've had three really good weeks in the past month. Before I started the combination of massage and swimming, I wanted to shoot myself. That may be a bit strong, but you understand what I mean.
What makes you feel worse: Activities that cause me to use my upper arms like free-style swimming, vacuuming, laundry...
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'm not sure what you mean here. I am trying to eat more fruits and vegetables, less red meat, less salt and fat.
Have you tried any thyroid specific treatments: no
Your theories or comments: My massage therapist and doctor have both brought up the idea of life traumas that can trigger an FM event. I had a really bad year the year I was diagnosed. Physical, emotional and professional. Before all of that and the drug reaction, I was always just fine. Health problems have never been an issue and I was active. I liked to kayak, camp, swim, snorkel, scubadive, I walked around 30 miles a week, like to travel, garden and do yard work. I actually miss raking the leaves. I try not to resent it, but I miss those things. I try to keep a positive attitude and I don't plan to give in to it anymore than I have to.
Are we missing any important questions:

11/12/2009
First Name: Maurice
Age: 77
Male or Female: Male
City: Englewood
State/Province: Florida
Country: USA
How long have you lived there: 14Months
Where were you born: Arkansas
Is this the first time you have taken our questionnaire: Yes
If not, why are you returning:
Are you still working: No
What is Your Line of Work: Retired Aerospace
How has Fibro affected your ability to work: Took Early Retirement
How has Fibro affected your life: Greatly,Slowly lost physical energy
What were your first symptoms: Hard,sore muscles in my back,Not caused by any injury that I am aware.
Your age at onset of symptoms: 38
How fast was your rate of decline: slow
What are your current symptoms: Pain anf Fatigue
Number of years since you developed symptoms of fibromyalgia: 41
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: Hard to say as I take Hydrocodone for the pain.
Estimate number of doctors you have seen for Fibro related symptoms: about 6
Do your doctors tend to focus on all your Fibro symptoms: Not at all.
Do your doctors treat your symptoms individually or collectively: No,Nothing ever shows up on blood work,EKGs etc so they just ignore my complaints.
Describe your experience with doctors: My VA doctor at least knows I have FMS and says "you can't be hurting all the time and Rx,ed Hydrocodene.
What remedies or medications have you tried: I did Dr.StAmand's Gui Protocal and did get some relief but after 8 years sore spots began hurting worse and I had to give up.
What makes you feel better: Warm Baths and rest
What makes you feel worse: Physical activity
Have you tried avoiding fluoride in your diet: No
If so, which sources of fluoride: I have just become aware of the Fluoride connection and haven't had time to sort things out.I am not aware of any Gross contact
Have you made dietary changes to avoid any other neutrotoxins: Generally do Dr StAmands liberal diet.my weight is good,173 lbs,5'10in.
Have you tried any thyroid specific treatments: No, Blood tests are always normal
Your theories or comments: I have tried to do the healthy things and have been sucessful but advancing age is a problem
Are we missing any important questions: No.From my reading of others with FMS,I think my story is typical.

11/10/2009
First Name: M.
Age: 33
Male or Female: female
City: Yigo
State/Province: GU
Country: USA
How long have you lived there: 1 year 5 months
Where were you born: CA
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: no
What is Your Line of Work:
How has Fibro affected your ability to work: yes
How has Fibro affected your life: yes
What were your first symptoms: fatigue, muscle ache, miraines
Your age at onset of symptoms: not sure
How fast was your rate of decline: not sure, felt overwhelming pain & fatigue and was diagnosed within 8 months and have since had rapid decline
What are your current symptoms: depression, fatigue, pain in upper torso, arms and hands, back, hips, lower extremities, memory loss, confusion and difficulty concentrating
Number of years since you developed symptoms of fibromyalgia: possibly 8 years
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 5
Describe the extent of your brain fog: difficulty completing tasks, lack of motivation, poor memory
Estimate number of doctors you have seen for Fibro related symptoms: 5
Do your doctors tend to focus on all your Fibro symptoms: no
Do your doctors treat your symptoms individually or collectively: both
Describe your experience with doctors: I do not feel that I have received useful treatment plan or a complete work up
What remedies or medications have you tried: heat & cold, physical therapy, synthroid, flexerill, effexor, lunesta, currently trying lyrica & cymbalta
What makes you feel better: nothing
What makes you feel worse: daily tasks
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: synthroid
Your theories or comments: still in the begining and overwhelmed by all the theories and advice on the internet, not sure where to start and lacking the energy to start anywhere
Are we missing any important questions: unknown

11/09/2009
First Name: BARBARA
Age: 43
Male or Female: FEMALE
City: CAMDEN
State/Province: NJ
Country: USA
How long have you lived there: 43 YEARS
Where were you born: CAMDEN
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: NOT WORKING
How has Fibro affected your ability to work: YES
How has Fibro affected your life: IT HAS RUINED MY LIFE. I AM IN PAIN CONSTANTLY AND THERE IS NEVER ANY RELIEF.
What were your first symptoms: SEVERE UPPER THORACIC PAIN. LEG AND SHOULDER PAIN. IRRATIBLE BOWEL
Your age at onset of symptoms: 28
How fast was your rate of decline: VERY FAST
What are your current symptoms: SEVERE PAIN ALL OVER MY BODY
Number of years since you developed symptoms of fibromyalgia: 15 YEARS
Do your symptoms include brain fog: YES
Number of years since you developed the brain fog: 15
Describe the extent of your brain fog: FORGETFULLNESS; FEELING LIKE I LIVE INSIDE OF A BUBBLE; CONFUSION
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: THEY TREAT ME LIKE I CAN'T POSSIBLY BE IN THIS MUCH SEVERE PAIN. THEY TREAT ME AS IF I'M CRAZY
What remedies or medications have you tried: MSM, OMEGA 3, ADVIL, NEURONTIN, CALCIUM, MAGNESIUM, CIDER VINEGAR,
What makes you feel better: NOTHING
What makes you feel worse: NOTHING
Have you tried avoiding fluoride in your diet: NO
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: NO
Have you tried any thyroid specific treatments: NO
Your theories or comments: NONE
Are we missing any important questions: NONE

11/08/2009
First Name: A.
Age: 32
Male or Female: female
City: Alexandria
State/Province: va
Country: USA
How long have you lived there: 8 yrs
Where were you born: Polska
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: runnung errands for my bos's kids, organizing her home, her finances,
How has Fibro affected your ability to work: It nakis ne tired and irritable. There are days that I am not able to come to work because of pain. sometimes it is hard to walkm because my ankled hurt. I feel very discouraged that I am not able to be 100% myself. I dread work!
How has Fibro affected your life: I feel that i am not able to do as much as I did before fibro. Less walking, less fun wiht friends.
What were your first symptoms: Extremaly tense body and jaw. When I wouold go to bed in the evening, I could get these parts to relax.
Your age at onset of symptoms: 32
How fast was your rate of decline:
What are your current symptoms: PAin all over the body, tiredness, less energy.
Number of years since you developed symptoms of fibromyalgia: 1 year
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 10
Describe the extent of your brain fog: I just can't do my work, late papers at school, It feels like I am spacing out all the time
Estimate number of doctors you have seen for Fibro related symptoms: 4
Do your doctors tend to focus on all your Fibro symptoms: nope
Do your doctors treat your symptoms individually or collectively: individually
Describe your experience with doctors: I feel like a hypochondriak every time I talk to someone about my symtopms. As if it was only in my head!!!
What remedies or medications have you tried: propranolol just started and a high dose of Vit D
What makes you feel better: It helps a little
What makes you feel worse: regular painkillers, they don;t help and they upset my stomach
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: no
Have you tried any thyroid specific treatments: no
Your theories or comments:
Are we missing any important questions:

11/08/2009
First Name: Audrey
Age: 50
Male or Female: Female
City: Ada
State/Province: MI
Country: USA
How long have you lived there: 11 1/2 years
Where were you born: St. Paul, MN
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: Yes
What is Your Line of Work: Teaching assistant
How has Fibro affected your ability to work: Yes
How has Fibro affected your life: I am basically exhausted all of the time. Never have a restful night of sleep. I have recently withdrawn from my life basically. Rely on sleeping with iPod with white noise to drown out tinnitus. My life right now is filled with one appointment after another.
What were your first symptoms: 1.Poor sleep patterns & burning pain in legs. 2. intermittent bouts of sleeplessness and Irratable Bowel 3. Muscle tension, pressure points. Edginess, nervousness. Over reactions to stimulus of any kind. Headaches. EXTREME fatigue.
Your age at onset of symptoms: 1. Age 33 2. ages 33-48 3. ages 48-50
How fast was your rate of decline: slowly at first, most recently much quicker
What are your current symptoms: Originally before diagnosis in 1992 I was very afraid that I had a catastrophic disease that would debilitate me and take my kid's mother away from them prematurely. After learning about fibro, I at that time had the energy, outlook to overcome the obstacles it brought into my like. Yes I was tired, but i had 4 little kids to take care of. And my pain became more of a signal to me that I had REALLY overdone it and needed to rest. Now, almost 20 years later, I believe it's striking me with a vengeance. I have had a slow, insidious onset of foggy headiness and tinnitus. I have been on "hyper-sensitized" mode for over a year now. I have not been able to sleep without some form of aid for over a year (maybe 2? years now) My breathing is shallow, I have been diagnosed with cervical bone spurs. I recently went through a breakdown of my nervous system, for which I am being treated with anti-depressants. Very light, noise sensitive Blurry vision. I am going to PT, Psychotherapy, not to mention my regular DO.
Number of years since you developed symptoms of fibromyalgia: 17
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 have to use every ounce of energy I have to get through each day. I sometimes walk in circles trying to remember what my task is. I feel like I have a rubber band around my head at times, and then sometimes that subsides a little. The tinnitus seems directly related with the brain-fog. So seems the blurry vision.
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: At Mayo clinic, I would say that the team approach was refreshing. I have mentioned fibromyalgia to current doctor(s) and they continue to search for something called "something else"
What remedies or medications have you tried: PT, no perscription drugs.
What makes you feel better: the less sleep i get, the worse I feel
What makes you feel worse: stress
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: no
Have you tried any thyroid specific treatments: Yes, I have been hypo-thyroid for almost half my life. I take levoxothorine (Sp)
Your theories or comments: I am starting to think that I have both Fibromyalgia & Chronic Myofascial Disease.
Are we missing any important questions:

11/08/2009
First Name: Dianna
Age: 41
Male or Female: Female
City: Fairbanks
State/Province: Alaska
Country: United States
How long have you lived there: 21 years
Where were you born: Fairbanks Alaska
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: Pilot/ Airport Operations Officer
How has Fibro affected your ability to work: It is very hard to continue to work with Fibromyalgia. I pretty much save my strength for my work week, which consists of 3 10 hour days and 1 7.5 hour day. When I have to work overtime I sleep most of my time off. I think I have a stuborn streak and don't want to give up my income at only 41 years of age. It is extremely hard to juggle this and work. I really don't have a personal life any more. Whe I was finally diagnosed in July 2009 I was just so happy that what I was going through actually had a name, I was also excited about treatment, but after trying so many differnet drugs with no noticable benefit I feel a little down about that.
How has Fibro affected your life: It has really changed my life. I feel everything and what my body is saying is so severe. I use to be able to handle everything, job, my child, my mariage, and enjoy my passion for horses, now I'm just happy if I am able to just pet my horse. Emotioanal I'm a wreck, I used to have fun now it's hard to even smile. I use to whine alot now I just don't tell people how much pain I'm in. I hate being the weak one, but I have no choose.
What were your first symptoms: Low back pain, which for years Dr. could not tell me why my back was so painful.
Your age at onset of symptoms: 40
How fast was your rate of decline: I was able to handle my pain prior to my husbands heart attack last Nov, after that it put me over the edge with anixity and depression. Know Dr in Fairbanks Alaska has any training so I ended up going to Virgina Mason in Seattle and was diagnosed with one visit.
What are your current symptoms: Pain, muscle and stiffness in all for quadarts of my body, headache, anixiety and some depression. Insomina is also very problematic.
Number of years since you developed symptoms of fibromyalgia: 3 years
Do your symptoms include brain fog: yeas
Number of years since you developed the brain fog: 1
Describe the extent of your brain fog: I forget things alot. I can also be talking and lose my train of thought. I get spacy and really don't know what I'm watching o TV. I can also get really stressed feeling, and my mind jumps from one stressor to the next.
Estimate number of doctors you have seen for Fibro related symptoms: 6
Do your doctors tend to focus on all your Fibro symptoms: My current Dr does, but prior to diagnosed I was thought to be a drug seeker.
Do your doctors treat your symptoms individually or collectively: Right now we are working on each sympton indiviually
Describe your experience with doctors: Wow, I really hate Dr's after what Ive been though. I knew something wasn't right, I continued with one dr and ended up in the phyc ward for 40 hoours. I was called manic depressive to a drug seeker. I had to hold strong and self referred myself to Seattles Virgina Mason and Dr Carlin whom is an angle.
What remedies or medications have you tried: working out, antidepressaants, message, swimming, acupuncture, antianiety drugs, anti convultion drugs.
What makes you feel better: sleep
What makes you feel worse: Weahter changes
Have you tried avoiding fluoride in your diet: yes
If so, which sources of fluoride: tooth paste is the only fluride and drinking water
Have you made dietary changes to avoid any other neutrotoxins: Nope
Have you tried any thyroid specific treatments: No but I want too
Your theories or comments: I do believe I have always had fibro but the stress of my husbanks heart attack is what has pushed them over the edge.
Are we missing any important questions: No

11/07/2009
First Name: Aria
Age: 30
Male or Female: Female
City: Atlanta
State/Province: Ga
Country: United States
How long have you lived there: 6yrs
Where were you born: Cleveland
Is this the first time you have taken our questionnaire: no
If not, why are you returning: progress. I am having some progress but would like to get even better.
Are you still working: no
What is Your Line of Work: nonprofit
How has Fibro affected your ability to work: not much getting ready to go back to school to obtain Masters
How has Fibro affected your life: I am still able to do most things. Exercise, however I do notice a difference in my endurance. I also notice a difference in my daily routines and how tired I get easily. The doctor encouraged me to get plenty of sleep. I noticed on nights when I get enough rest my physical cababilities are alot higher.
What were your first symptoms: Numbness in hands and feet. Eyes burning.
Your age at onset of symptoms: 30
How fast was your rate of decline: over a span of 6 months I say it has gotten worse.
What are your current symptoms: Burning/ tingling in skin. eyes burn. Food allergies/ Gluten. Acid Reflux. Congestion in sinuses.
Number of years since you developed symptoms of fibromyalgia:
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: some of my symptoms
Do your doctors treat your symptoms individually or collectively: individually
Describe your experience with doctors: When I first told my primary physician what I thought the problem was she agreed and suggested I see a rheumatologist. I have not seen him yet I am not sure if this is the right specialist for this issue.
What remedies or medications have you tried: none
What makes you feel better: not eating gluten, eating for my blood type and getting enough sleep.
What makes you feel worse: When I go off the wagon and eat something with wheat I tend to feel more numbness and tingling.
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride: I am getting ready to purchase a alkaline water filter machine.
Have you made dietary changes to avoid any other neutrotoxins: yes, more organic foods
Have you tried any thyroid specific treatments: no
Your theories or comments: I really would like to go the natural route rather than take medication to combat this awful disorder and believe it can be done.
Are we missing any important questions: What treatments do you recommend that will help me combat this disorder? Also if my Rheumatologist tries to give me medication what meds should I avoid?

11/06/2009
First Name: Debbie
Age: 53
Male or Female: female
City: Missoula
State/Province: Mt.
Country: USA
How long have you lived there: always
Where were you born: Missoula,Mt/
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: cosmotology
How has Fibro affected your ability to work: I work three hours three days. in alot of pain
How has Fibro affected your life: I have lost friends, business, and the loss of memory is affecting relationships with my children.
What were your first symptoms: Pain, in my joints shoulders and arms,neck, legs,
Your age at onset of symptoms: 35 or so.
How fast was your rate of decline: Slow at first and has gone quicker this past three years
What are your current symptoms: pain, constant and joints that can't bend down and and get up without support to push up on.
Number of years since you developed symptoms of fibromyalgia: several
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: past 4 or more
Describe the extent of your brain fog: It seems my short term memory is a mess. I can't remember what people tell me.
Estimate number of doctors you have seen for Fibro related symptoms: 5
Do your doctors tend to focus on all your Fibro symptoms: Not really
Do your doctors treat your symptoms individually or collectively: Collectively
Describe your experience with doctors: tiring, hopeful for less pain
What remedies or medications have you tried: Lyrica,amitriptaline, lortab, clonazpam
What makes you feel better: warm weather, laying in bed. keeping stress down.
What makes you feel worse: working to much, 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: tried to stay away from gluten,and sugars
Have you tried any thyroid specific treatments: Never had any tests for thyroid
Your theories or comments: I feel it is a very disabling disease that progresses and should be given social security disabilty benefits.
Are we missing any important questions: Do I have insurance. The answe is no.

11/06/2009
First Name: Elaine
Age: 49
Male or Female: female
City: toronto
State/Province: On
Country: Canada
How long have you lived there: 49
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: real estate
How has Fibro affected your ability to work: difficult in the morning
How has Fibro affected your life: not as much energy and it is sometime hard to do what I did in the past
What were your first symptoms: sore neck and arm
Your age at onset of symptoms: 49
How fast was your rate of decline:
What are your current symptoms: sore arms and legs
Number of years since you developed symptoms of fibromyalgia: recently
Do your symptoms include brain fog: no
Number of years since you developed the brain fog: 0
Describe the extent of your brain fog: I have no noticed anything yet
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: collectively
Describe your experience with doctors: good
What remedies or medications have you tried: none
What makes you feel better: strehecking
What makes you feel worse: sitting
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 is caused my not eating properly and stress
Are we missing any important questions: no

11/05/2009
First Name: Elizabeth
Age: 56
Male or Female: Female
City: Farmersville
State/Province: TX
Country: US
How long have you lived there: 3 years
Where were you born: Houston, Texas
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, fibro fog, fatigue and pain restrict both professionally and socially
How has Fibro affected your life: My life revolves around chores, which are done over time instead of all at once in one day; limited activities...mostly going to doctor and grocery shopping; isolation and inability to tolerate many environments
What were your first symptoms: pain and fatigue
Your age at onset of symptoms: 49
How fast was your rate of decline: almost immediately after arthroscopic knee surgery
What are your current symptoms: fatigue, pain, tender spots really all over not just the 18 for diagnosis, syptoms cross over with CFS as well, fibro fog, medication issues; depression,i know there are others, i just read them but can not remember them...
Number of years since you developed symptoms of fibromyalgia: 9.5
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 9.5
Describe the extent of your brain fog: I am back at college and I do well but i forget when assignments are due, even with outlook reminders. Learning is not affected but concentration is disturbed by distractions. I take online classes so I can regulate environment. Even with that, professors don't understand and have created a lot of anxiety to the point of filing for disability at the school.
Estimate number of doctors you have seen for Fibro related symptoms: 50+
Do your doctors tend to focus on all your Fibro symptoms: they focus only on what they see as the difficulty in relation to their area of expertise. Even fibro and CFS center do not treat what shows up on blood work unless it falls within their frame of reference. (the Dallas clinic more of a money pit with poor quality doctors) f
Do your doctors treat your symptoms individually or collectively: individually...if lucky they will treat maybe one or two others...never collectively
Describe your experience with doctors: I have become tainted with the medical professional training and mindset. I have seen good people who were doctors but not able to effectively even wrap their minds around the gobal aspect of the disease of the issues that the symptoms may be related and should be treated as such. so I have a cardioloist, neurologist, rhumotologist
What remedies or medications have you tried: Ultram, Soma, Baclafen, Cymbalta, Savella, Porvigil, nuvigil, adderall, acupuncture, biofeedback, strange things like the suction cup things that increase blood flow to my back, yoga, exercise, hydro therapy, infrared sauna, diet, organics, detox, supplementation
What makes you feel better: the savella and nuvigil seem to be working better
What makes you feel worse: stress, over doing it,
Have you tried avoiding fluoride in your diet: yes
If so, which sources of fluoride: tap water, did not know about floride in prescription drugs, i avoid all pesticides...it may have contributed to my contracting the illness. We had moved to a new house in a recently development with lots of spiders and had the house sprayed repeatedly for months. Together with the surgery, rsd and so...i got sick
Have you made dietary changes to avoid any other neutrotoxins: organic as much as possible, less processed food
Have you tried any thyroid specific treatments: amour thyroid, but my hair is still falling out alarmingly and i suspect my body is not processing the supplement as it should...neither does it seem to grab hold of the B Vitamins, estrogen and progesterone that i have as compounded prescriptions, because the lab work shows no effect of them in my blood work.
Your theories or comments: Researchers, once they got over that women were imagining the symptoms and began exploring possibilities, the real work began. But even today, researchers are attempting to find a psychiatric cause and comorbidity. I have always believed that fibromaylgia was associated with environment, neurotoxns, sympathetic and parasympathetic nervous system. The reason is that the flight/fight response was activated and never turned off. Many with fibro were high functioning individuals before the disease. Years of body systems that were turned on and never allowed to return to normal has affected our bodies. Who knew even that it was like that until symptoms appeared.
Are we missing any important questions: It would be helpful if your forms had check boxes. It would help on your end too because you could set up a database which would allow you to do searches and see patterns more readily. Other questions: What other diagnosis have your had since being diagnosed with fibromyalgia? (literature indicates that fibromyalgia does not get worse over time or affect other body systems. I disagree. How can it not? There is a progression to it, but because of doctors treating individual symptoms and because of the body systems appear independent they do not see the forest for the trees. ie. heart, lungs)

11/05/2009
First Name: Darla
Age: 49
Male or Female: female
City: murfreesboro
State/Province: tn
Country: united states
How long have you lived there: 17 years
Where were you born: tulsa, ok
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: yes
What is Your Line of Work: inventory control manager
How has Fibro affected your ability to work: can't lift anything, hard to use scanner for inventory
How has Fibro affected your life: irritable all the time, can't focus on anything
What were your first symptoms: Pain in right arm and leg with numbness in upper thigh and fingers
Your age at onset of symptoms: 48
How fast was your rate of decline: very fast, lost 23 lbs in a matter of two weeks, pain began in right arm and leg and go increasingly worse
What are your current symptoms: Right arm and leg pain, radiating across chest to left arm, can't lift arms in the mornings, some mornings daughter has to help me get dressed to go to work. I can't even brush my hair
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: can't remember how to do my job, can't remember small things like the names of everyday items, like broom, laundry soap, scissors, etc.
Estimate number of doctors you have seen for Fibro related symptoms: twice
Do your doctors tend to focus on all your Fibro symptoms: somewhat
Do your doctors treat your symptoms individually or collectively: collectively
Describe your experience with doctors: Did an 18 point pain test to determine fibro then subscribed Cymbalta for the symptoms
What remedies or medications have you tried: Cymbalta, Ibuprofen, Aleve
What makes you feel better: Alleve used to but now nothing does
What makes you feel worse: Cymbalta, I am allegic
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride: na
Have you made dietary changes to avoid any other neutrotoxins: no
Have you tried any thyroid specific treatments: no
Your theories or comments:
Are we missing any important questions:

11/04/2009
First Name: ELINOR
Age: 49
Male or Female: FEMALE
City: FALKIRK
State/Province: STIRLINSHIRE
Country: SCOTLAND
How long have you lived there: WHOLE LIFE
Where were you born: GLASGOW
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: NO
What is Your Line of Work: HAVENT WORKED SINCE BIRTH OT TWINS 1982
How has Fibro affected your ability to work: YES
How has Fibro affected your life: BIG IMPACT,NOT SLEEPING OR SLEEPING TO MUCH,BRAIN FOG. EXTREME PAIN, ANXIETY ,DEPRESSION
What were your first symptoms: ELBOW PAIN ON BOTH
Your age at onset of symptoms: ROUGHLY IN 40 S
How fast was your rate of decline: FAST
What are your current symptoms: PAIN ALL OVER. DEPRESSION ,ANXIETY.BAD SLEEP PATTERN,IBS
Number of years since you developed symptoms of fibromyalgia: BOUT 8 OR 9
Do your symptoms include brain fog: YES
Number of years since you developed the brain fog: LAST FEW
Describe the extent of your brain fog: FORGETTING THINGS CANT 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 .NEW DOCTOR HAS AFTER BEEN DIAGNOSED
Do your doctors treat your symptoms individually or collectively: NEW DOCTOR DOES
Describe your experience with doctors: NOT TO GOOD BUT SINCE COLOSTOMY TAKING MORE NOTICE
What remedies or medications have you tried: AMITRIPTYLINE..OXYCONTIN..CODEINE..GAPAPENTIN.CITALOPRAM
What makes you feel better: IF I GET GOOD SLEEP,WHICH I DONT EVER
What makes you feel worse: NOT SLEEPING.EXERCISE.STRESS
Have you tried avoiding fluoride in your diet: ONLY NOW
If so, which sources of fluoride: TOOTHPASTE AND WATER
Have you made dietary changes to avoid any other neutrotoxins: DONT KNOW WHAT THEY ARE, NOT HAVING MSG
Have you tried any thyroid specific treatments: NO
Your theories or comments: WHEN WILL I GET RID OF THIS
Are we missing any important questions: HOW PERSON FEELS

11/04/2009
First Name: judy
Age: 42
Male or Female: female
City: papatoetoe
State/Province: auckland
Country: new zealand
How long have you lived there: 43
Where were you born: auckland
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: lazer therapist
How has Fibro affected your ability to work: yes, very much so, it has made my whole difficult.
How has Fibro affected your life: get tired, to sore to enjoy life, caused issues with partsof my life, work sex etc.....
What were your first symptoms: tender points, headaches, general pain etc
Your age at onset of symptoms: 17
How fast was your rate of decline: 17 to 24 slow, 30 to now fast
What are your current symptoms: tiredness fitigue, headaches, no sleep , depression,joint pain, all over pain, irratiable bowl, loss of memory , eyes not as good
Number of years since you developed symptoms of fibromyalgia: 24 years ago.
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 4
Describe the extent of your brain fog: just cannot olgically think things threw, fell like im still half a sleep.
Estimate number of doctors you have seen for Fibro related symptoms: 3
Do your doctors tend to focus on all your Fibro symptoms: no not really.
Do your doctors treat your symptoms individually or collectively: collectivelly, just in the last 3 to 4 months it has got so bad that my number of medication has increased by 60 percent,
Describe your experience with doctors: some understand, but most dont know what to do to help.
What remedies or medications have you tried: effexor,brufen, zopiclone,nortriptalyne, amptitryptaline,voltarin
What makes you feel better: nothing at the moment which is why im searcging the net
What makes you feel worse: over work, stress, not 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 dont really understand about nurion toxins
Have you tried any thyroid specific treatments: no
Your theories or comments:
Are we missing any important questions:

11/03/2009
First Name: kimberly
Age: 51
Male or Female: female
City: stigler
State/Province: oklahoma
Country: usa
How long have you lived there: 35 yrs
Where were you born: california
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: no
What is Your Line of Work: disable RN
How has Fibro affected your ability to work: cannot work too much pain stiffness difficulty walking at times use cane often
How has Fibro affected your life: slows me down loss of sleep biggest problem irritable bowel syndrome is a bother
What were your first symptoms: legs numbness and intractible pain from head to toe lasted 15 long months
Your age at onset of symptoms: 46
How fast was your rate of decline: slow
What are your current symptoms: neck and back pain loss of balance insomnia
Number of years since you developed symptoms of fibromyalgia: 5 yrs
Do your symptoms include brain fog: yes at times memory is bad
Number of years since you developed the brain fog: maybe 2 yrs
Describe the extent of your brain fog: cannot always choose the right words, space out
Estimate number of doctors you have seen for Fibro related symptoms: 6
Do your doctors tend to focus on all your Fibro symptoms: no they wanted to run tests for everything i told them i thought i had fibro they ignored it
Do your doctors treat your symptoms individually or collectively: treated symptons only
Describe your experience with doctors: did not listen to me
What remedies or medications have you tried: lyrica, neurontin, pain pills, lortab, tramadol, methocarbonal, do not help
What makes you feel better: heat sometimes help neck pain, bedrest
What makes you feel worse: stress and weather changes
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride: i have whole house water purifier
Have you made dietary changes to avoid any other neutrotoxins: no
Have you tried any thyroid specific treatments: no
Your theories or comments: fibro is a debilitating disease
Are we missing any important questions: no

11/03/2009
First Name: Adriane
Age: 31
Male or Female: female
City: san antonio
State/Province: tx
Country: united States
How long have you lived there: 19 years
Where were you born: 1978
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: cant sit and stand for long periods and type a lot
How has Fibro affected your life: tired, grumpy, hurting, not happy all the time anymore
What were your first symptoms: back pain
Your age at onset of symptoms: 12
How fast was your rate of decline: slow
What are your current symptoms: constant back pain from sitting or standing any period of time, sharp pain, problems sleeping due to joint pain, migraines
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: I have no short term memory and can lose my thought in the middle of a sentence
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: ok, mainly give me injections
What remedies or medications have you tried: lyrica, avinza (morphine), vicodin, tylenol arthritis, ibuprofen, flexeril,
What makes you feel better: injections and deep massage temporarily relieves pain
What makes you feel worse: sitting standing, walking any period of time
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: no
Have you tried any thyroid specific treatments: no
Your theories or comments:
Are we missing any important questions: no

11/02/2009
First Name: Lizzie
Age: 27
Male or Female: Female
City: Dayton
State/Province: Ohio
Country: US
How long have you lived there: all my life
Where were you born: Dayton
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
How has Fibro affected your ability to work: Some days I am too tired or too sore to get out of bed. If I am able to get out of bed, I have symptoms that make me not want to leave the house. If I leave the house, my urinary problems sometimes make me have to rush home.
How has Fibro affected your life: I choose to stay home more than anything else. Sometimes I am even too tired to sit and read a book, going to collect the mail seems like a long walk that I don't want to take.
What were your first symptoms: Back Pain Chest Pain Urinary Pain Trouble Sleeping Never Feeling Rested
Your age at onset of symptoms: 20
How fast was your rate of decline: It took years
What are your current symptoms: I still have the same symptoms as when it started but it is continually getting worse, it feels like it is slowing down again though.
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: Sometimes when people are driving they realize that they weren't paying attention and they don't really remember the last few minutes of the drive...that is how I feel thoughout my entire life.
Estimate number of doctors you have seen for Fibro related symptoms: 3
Do your doctors tend to focus on all your Fibro symptoms: No
Do your doctors treat your symptoms individually or collectively: Collectively
Describe your experience with doctors: I think that fybromyalgia takes a lot of time to diagnose...a doctor has to make you feel comfortable so that you will tell them everything. At times I thought I was just being a baby but my doctor would not have found a lot of things out if she hadn't made me feel comfortable. It is hard to find a doctor that takes you seriously.
What remedies or medications have you tried: Savella and a muscle relaxer at night.
What makes you feel better: Sometimes a heating pad or a hot bath can bring a little relief. No medication has made the pain go away.
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: I am vegitarian.
Have you tried any thyroid specific treatments: No
Your theories or comments:
Are we missing any important questions:

11/02/2009
First Name: Vanessa
Age: 34
Male or Female: female
City: Bakersfield
State/Province: CA
Country: USA
How long have you lived there: 34
Where were you born: West Covina, CA
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: yes
What is Your Line of Work: Correctional Officer
How has Fibro affected your ability to work: I am a lot slower in finishing my duties.
How has Fibro affected your life: I come home from work, park my car and do not go back out until it is time to take the kids to school.
What were your first symptoms: Headaches and muscle stiffness/soreness in my neck and shoulders
Your age at onset of symptoms: 30
How fast was your rate of decline: Slow at first but within the last year it has become constant pain over a major portion of my back.
What are your current symptoms: Headaches, neck, shoulder and back muscle pain. IBS, and lack of concentration.
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: When I am talking I forget what word I am looking for. There are times when I stutter.I get mad, I was blaming it on stress and my family for expecting too much out of me. It has not interferred with my job.
Estimate number of doctors you have seen for Fibro related symptoms: 2
Do your doctors tend to focus on all your Fibro symptoms: No. I have not actually been diagnosed with FM. I have suffered at home and not really pursued being diagnosed. I just thought these were all seperate symptoms from seperate problems.
Do your doctors treat your symptoms individually or collectively: As far as treatment I was given ibuprofin and mild muscle relaxers
Describe your experience with doctors: I have been given x-rays twice, which would not show any muscle problems. I think a lot of times Dr.s feel they must do something to pacify us.
What remedies or medications have you tried: I have just been taking over the counter pain relievers and prescription muscle relaxers, but I'm all out of those.
What makes you feel better: When I have empty bowels I feel the best. But otherwise, pain relievers and muscle relaxers
What makes you feel worse: Drinking alcohol
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 visited a Holistic Doctor about a year ago. He said the pain in my neck and shoulders (now also in my back and legs) was caused from uric acid in my body, possibly from my high intake of coffee. He gave me flax seed oil and bowel stimulators.I did cut back on coffee an take the prescribed pills and it did seem to work. So i definately think my body does not process food and nutrients as efficiently as others. I feel like I have a problem with my digestive system that is either the cause or a major factor in my pain.My mom had liver cancer and when she couldn't empty her bowels and toxins built up it would cause her to get delusional (for a lack of a better word) so that could be where my lack of concentration stems from.
Are we missing any important questions:

11/01/2009
First Name: chris
Age: 55
Male or Female: female
City: melbourne
State/Province: victoria
Country: australia
How long have you lived there: 39 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: clerical
How has Fibro affected your ability to work: yes
How has Fibro affected your life: yes
What were your first symptoms: muscle spasms, red hot pinprick sensations & cramps alternating in each quadrant of my back, (doctor said I was experiencing muscle pain of the chest wall and didn't investigate any further)
Your age at onset of symptoms: 46
How fast was your rate of decline: quick
What are your current symptoms: muscle aches, pains, muscle spasms, cramps, hot pins sensations, migraine headaches, fatigue,
Number of years since you developed symptoms of fibromyalgia: 9-1/2 years
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 9-1/2 years
Describe the extent of your brain fog: i get very vague, can't think straight, feel like my thoughts are crawling through thick cobwebs
Estimate number of doctors you have seen for Fibro related symptoms: about 8-10 including rheumatologists
Do your doctors tend to focus on all your Fibro symptoms: no
Do your doctors treat your symptoms individually or collectively: usually individually
Describe your experience with doctors: not too good, most wouldn't acknowledge fms, i got told it was all in my head, when applying for a disability pension one doctor wrote a report to the gov't that said i needed to see a psychologist, a psychiatrist and i needed to go out and get a job!
What remedies or medications have you tried: bowen therapy, kinesiology, meditation, antidepressants, calcium & magnesium supplements, tissue salts, flower essences, paracetamol, slow-release paracetamol, colloidal minerals,
What makes you feel better: bowen therapy, kinesiology, meditation, colloidal minerals, tissue salts, flower essences, calcium & magnesium supplements, slow-release paracetamol
What makes you feel worse: not sure
Have you tried avoiding fluoride in your diet: yes
If so, which sources of fluoride: tap water - didn't know it was in prescription drugs
Have you made dietary changes to avoid any other neutrotoxins: more fresh fruit & veg, less red meat, only drink filtered water, i will treat infections with herbal medicine and i will only use anti-biotics as a 'last resort' no msg, no artificial sweetners
Have you tried any thyroid specific treatments: no
Your theories or comments:
Are we missing any important questions: can't think of any at the moment

11/01/2009
First Name: paula
Age: flower
Male or Female: female
City: manchester
State/Province: cheshire
Country: england
How long have you lived there: 35years
Where were you born: manchester
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 an aseptic pharmacy technician
How has Fibro affected your ability to work: My line of work is very physical & repetitve I find it difficult as I have to take lots of pain killers to do my job. My concentration is affected due to constant pain & lack of decent sleep & too many opiate based medicines.
How has Fibro affected your life: It affects my personal life becuase if I go out too much after working full time I often end up in a lot of pain. I have to try & pace myself but you can't stay in all the time so I feel like I just have to suffer the consequenes of enjoying myself. My husband has had to take time off work to look after me when I haven't been able to walk. These periods leave me feeling down. I worry about losing my job, I worry that I can't have a family because I won't be able to cope. It affects me mentally aswell as physically.
What were your first symptoms: Muscle fatigue & pain, sharp pains in my shoulders back elbows & bones, chronic headaches, severe dead leg
Your age at onset of symptoms: 29
How fast was your rate of decline: Fairly quick
What are your current symptoms: Back pain upper & lower. Shoulder pain, neck pain, nerve type pain over the back of my shoulders, sharp pain in elbows head & bones. Kidney pain also pain in muscles around my whole tourso. Pain in glutes, groin, hamstring & hip so severe that I can't always walk. Dead legs Headaches & migraine, chronic fatigue. Constipation, trouble emptying bladder
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: 3
Describe the extent of your brain fog: Forgetful, poor concentration, I have lost personal items, find it hard to multi task, I don't seem to able to take onboard information & remember it, i
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: Collectively
Describe your experience with doctors: My gp tries to give me anti depressants I do get down but its because of the pain so I don't won't to take anti depressants. I feel I have had to lead him by suggesting new drugs etc by suggesting courses I could attend I feel he isn't well informed on fibromyalgia, if I ask his advice he just says we can't help you anymore. I did see another doctor at the same practise she did send me for a scan on my spine and seemed to take my symptoms more seriously. I saw a rheumatologist who diagnosed fibromyalgia he prescribed amitriptaline but there was no follow up or advice though. I saw another gp when I was in very bad pain & I was very depressed he prescribed morphine patches & diazepam to help me sleep I asked for a referral to the pain clinic. The pain clinic told me to try gabapentin but did however worn me that it probably wouldn't make my symptoms go away & they explained I couldn't carry on using diazepam & morphine & that I had to learn to live with my symptoms and try to manage my fibromyalgia. Since then I have taken the gabapentin it doesn't seem to be working I am considering coming off this drug. I spoke to my gp on the phone two weeks ago as I couldn't get an appointment I asked if I could arrange to see him to disscuss my fibromyalgia he said there was no point as there was nothing he could do. So now I feel at a loss.
What remedies or medications have you tried: Co codamol 30/500mg. Pregabalin Gabapentin 600mg. Arcoxia. Morphine patches. Diazepam. Amitripaline
What makes you feel better: Nothing, rest & pain killers sometimes eases the symptoms but they never go away
What makes you feel worse: Too much physical activity, work, socialising, exercise. But sometimes I do nothing to trigger more pain but it happens anyway
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 understand fibromyalgia I have heard so many theories from different doctors. I feel there isn't enough help for people who suffer and many people don't know about this condition. I also think some people think your faking your symptoms.
Are we missing any important questions:

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