Fibromyalgia Questionnaire & Results

Latest Update: 03/13/2010

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.

20 QUESTIONNAIRE COMPLETED DATA FORMS FOR March 2010

03/13/2010
First Name: Donna
Age: 51
Male or Female: female
City: Lancashire
State/Province: Rochdale
Country: U>K>
How long have you lived there: 50yrs
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: secretary
How has Fibro affected your ability to work: exhaustion & brain fog with pain causes disabiity
How has Fibro affected your life: ruined mylife as there is no quality
What were your first symptoms: flu like virus
Your age at onset of symptoms: 38
How fast was your rate of decline: slowly
What are your current symptoms: weight gain, rashes, pain,depression
Number of years since you developed symptoms of fibromyalgia: 12
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 6
Describe the extent of your brain fog: i forgetwhere i have put car keys and forget important dates
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: collectively
Describe your experience with doctors: i feel they do not believe in fibromyalgia
What remedies or medications have you tried: amytryptyline, vitamins, pain meds & vitamin D and calcium
What makes you feel better: a strong course of vitamin D & resting from stress
What makes you feel worse: stress, weather, actvity
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 feel thyroid is slow or underactive - tests say this is brdeline
Are we missing any important questions: we could be am having a bad day so would not know:(

03/13/2010
First Name: Barbara
Age: 62
Male or Female: female
City: Valdosta
State/Province: GA
Country: USA
How long have you lived there: 35 years
Where were you born: GA
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: Social Worker
How has Fibro affected your ability to work: I worked until I developed degenerative disc disease in my back; at that time I could no longer push past the pain of fibromyalgia and the back pain, too.
How has Fibro affected your life: I feel like it has robbed me of the retirement I have worked all my life for. I had so much looked forward to being able to enjoy spending time with my grandchildren.
What were your first symptoms: The pain came on gradually; being overweight I just thought it was the weight causing it at first. But as it got worst, as the fog developed, as the IBS got worse, I knew it was more than just the weight. My doctor started testing for RA and Lupus in 1990; it was 2005 before I was finally diagnosed with fibromyalgia.
Your age at onset of symptoms: Beginning at about age 40
How fast was your rate of decline: Gradually from age 40; I managed to work until age 56 when I could retire on reduced benefits, not disability.
What are your current symptoms: The pain, fibro fog, IBS, partial baldness, sometimes depression.
Number of years since you developed symptoms of fibromyalgia: Probably about 22.
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 20 + -
Describe the extent of your brain fog: Sometimes are worse than others; at its worse I won't even let my family know how bad it is. I stay isolated and won't come out of my room. At those times, I'm not even sure what my name is and certainly couldn't name my grandchildren.
Estimate number of doctors you have seen for Fibro related symptoms: 5
Do your doctors tend to focus on all your Fibro symptoms: No, each one treats their specialty
Do your doctors treat your symptoms individually or collectively: Each doctor treats their specialty; none want to look at the whole picture
Describe your experience with doctors: Not good, I see a rheumatologist who doesn't really believe in fibromyalgia, a PCP who sees me every 3 months but doesn't treat anything, and other specialists as needed. No one wants to treat ME.
What remedies or medications have you tried: Cymbalta, Lyrica, and other assorted medications. I took myself off those named.
What makes you feel better: Taking charge of my own care. Pacing myself, getting enough sleep, mild exercise, etc.
What makes you feel worse: Over extending myself, 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: never even been tested
Your theories or comments:
Are we missing any important questions:

03/12/2010
First Name: Nancy
Age: 54
Male or Female: female
City: Pittsburgh
State/Province: Pennsylvania
Country: USA
How long have you lived there: 20 years
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: Clinical Nutrition Manager
How has Fibro affected your ability to work: no
How has Fibro affected your life: yes
What were your first symptoms: generalized pain and joint pain
Your age at onset of symptoms: 40
How fast was your rate of decline: moderate
What are your current symptoms: hurt all over,including joint pain
Number of years since you developed symptoms of fibromyalgia: 14
Do your symptoms include brain fog: no
Number of years since you developed the brain fog:
Describe the extent of your brain fog:
Estimate number of doctors you have seen for Fibro related symptoms: 1
Do your doctors tend to focus on all your Fibro symptoms: no
Do your doctors treat your symptoms individually or collectively: collectively
Describe your experience with doctors: they suggest that I have it but thats it.
What remedies or medications have you tried: anti inflamitories, rest, heating pads
What makes you feel better: sometimes nothing
What makes you feel worse:
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride: tap water, toothpaste
Have you made dietary changes to avoid any other neutrotoxins: no
Have you tried any thyroid specific treatments: no
Your theories or comments:
Are we missing any important questions:

03/12/2010
First Name: Mary
Age: 62
Male or Female: female
City: Greenville
State/Province: MI
Country: USA
How long have you lived there: 62 years
Where were you born: Grand Rapids, 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: teacher
How has Fibro affected your ability to work: yes
How has Fibro affected your life: I have some real foggy days, when I can't think straight. I'm a lot less active than I wish I was.
What were your first symptoms: Pain in a lot of different places. Sleep problems, pain points,
Your age at onset of symptoms: 50
How fast was your rate of decline: Hard to say, with so many other medical issues.
What are your current symptoms: Fibro fog, pain that moves around, feel different on different days, sometimes an ache, sometimes like a million knives are stabbing me
Number of years since you developed symptoms of fibromyalgia: Probably 10
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: Very frustrating. Words sometimes just won't come. I'm a teacher, so this is not acceptable. Finding it hard to focus.
Estimate number of doctors you have seen for Fibro related symptoms: 2
Do your doctors tend to focus on all your Fibro symptoms: The feeling I get is that it can't be cured, take more pain meds, and deal with it.
Do your doctors treat your symptoms individually or collectively: Collective
Describe your experience with doctors: Just recently, the doctor said maybe I should see a psychologist.
What remedies or medications have you tried: Cymbalta, lyrica
What makes you feel better: Keeping really busy, so I don't think about how bad I feel
What makes you feel worse: Thinking about it.
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride: I think Flouride has been added to the drinking water in Grand Rapids. I lived there for 28 years.
Have you made dietary changes to avoid any other neutrotoxins: no
Have you tried any thyroid specific treatments: Yes, Lyrica and Cymbalta
Your theories or comments: I want a cure.
Are we missing any important questions: Family history of fibro problems.

03/11/2010
First Name: isabelle
Age: 47
Male or Female: female
City: nitro
State/Province: WV
Country: us
How long have you lived there: 10 yrs
Where were you born: Charleston,WV
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: no
What is Your Line of Work: cna,in home care,care taker
How has Fibro affected your ability to work: yes it has !!
How has Fibro affected your life: it seems i don't have a life anymore,its has affected every aspect of my life.i live with so much pain that i cant function.
What were your first symptoms: wide spread pain ,my spine felt like it was coming out of my back,my whole body!!!
Your age at onset of symptoms: 44
How fast was your rate of decline: just weeks not long at all.
What are your current symptoms: well i have many ,my back,shoulders,arms legs,neck ,my chest ,my whole self hurts...
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: well i can start talking and family has to finish i forget so much ,,my mind just races.i have to write things down so i dont forget..ect
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: seems to me they just don't believe me ,,,they want to treat you like your crazy ..this needs to be takes seriously this is real..
What remedies or medications have you tried: SO MANY I CANT REMEMBER ..LYRICA,CYMBALTA ECT...
What makes you feel better: nothing
What makes you feel worse: everything, over do myself stand too long sit too long don't sleep well any and everything bothers me i hurt constantly...
Have you tried avoiding fluoride in your diet: no,should i ?
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: i have tried so much sometime i feel like just saying the heck with it all..
Have you tried any thyroid specific treatments: well I'm on synthroid
Your theories or comments: well sometimes i feel like i been miss diagnosed ,,,so much pain in my body this is unreal...
Are we missing any important questions:

03/11/2010
First Name: Gloria
Age: 62
Male or Female: female
City: Willow Springs
State/Province: Missouri
Country: USA
How long have you lived there: 10yrs.
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: None, use to be a hairstylist, nail tech and home care.
How has Fibro affected your ability to work: There is no way I can work even though my heart and mind longs to.
How has Fibro affected your life: It has stolen the woman I once knew.
What were your first symptoms: All over pain.
Your age at onset of symptoms: 55
How fast was your rate of decline: Very fast.
What are your current symptoms: All over pain, every muscle, joint, tissue, feels like your being ate up, getting ready to be spit out.
Number of years since you developed symptoms of fibromyalgia: 9 yrs.
Do your symptoms include brain fog: Yes
Number of years since you developed the brain fog: 5
Describe the extent of your brain fog: Some days, cannot even think straight, feel like you've been on a very bad drunk...lost.
Estimate number of doctors you have seen for Fibro related symptoms: 3
Do your doctors tend to focus on all your Fibro symptoms: No
Do your doctors treat your symptoms individually or collectively: individually
Describe your experience with doctors: They have made me feel crazy, insuffnifiant, whiny woman...unimportant.See, I know my spellings wrong,but cannot think of right spelling.
What remedies or medications have you tried: Lyrica, Percocet, muscle relaxers, Trazodone,Celexa.
What makes you feel better: Heat, warm weather, PEACE, being busy.
What makes you feel worse: storm fronts, cold, definately stress & unrest.
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 sugar
Have you tried any thyroid specific treatments: medication
Your theories or comments: I don't feel the medical community even tries to understand or find out the depth of fibro. The compassion isn't there. I think Fibro is placed on a back seat when it comes to really finding out the cause & cure.
Are we missing any important questions: How can one get back the life they once knew. How can they make people understand it's NOT all in their heads, no matter how good they look or how much they smile. Don't they understand that it covers the pain? I feel totally alone in this journey of pain.

03/10/2010
First Name: Sandra
Age: 51
Male or Female: f
City: Goshen
State/Province: IN
Country: USA
How long have you lived there: 40 years
Where were you born: Los Angeles 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: I am on disability.
How has Fibro affected your life: It has destroyed it.
What were your first symptoms: panic, anxiety, fatigue, brain fog, muscle pain
Your age at onset of symptoms: 30-34
How fast was your rate of decline: After the radioactive iodine treatment it only took a couple of years.
What are your current symptoms: I am dealing with the pain and fatigue by wearing a TENS unit. This makes it possible for me to be out of bed during the day. I am emotional, exhausted and in chronic pain.
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: from the beginning 17
Describe the extent of your brain fog: It has ruined very important relationships in my life, caused extreme financial difficulties, etc, lots of mistakes... I ended up homeless for a year.
Estimate number of doctors you have seen for Fibro related symptoms: 2
Do your doctors tend to focus on all your Fibro symptoms: No. My doctor of 20 years has only advised me to exercise and sent me for psychiatric treatment.
Do your doctors treat your symptoms individually or collectively: Little to no treatment. Lots of medications.
Describe your experience with doctors: I did whatever I was told and swallowed whatever I was instructed. There was never a time when anything helped until my Vitamin D deficiency was found last summer. That is what put me on the trail of nutritional deficiencies.
What remedies or medications have you tried: Daily, I am taking 500mg of niacin, 200mg of riboflavin, 3000 to 5000mg of vit C, 400IU of vit E, 4000IU of vit D, 12.5g of Iodine, 1/2 to 1 teaspoon of unrefined salt, drink lots of re-mineralized distilled water 3-4 quarts a day, 600mg magnesium, 200mcg selenium, multi-vitamins
What makes you feel better: anything that relieves stress, a good night of sleep where I don't wake up (rare), tenderness from my husband or children or friends, days when my thinking is clear
What makes you feel worse: stress,especially about money, long car rides, second hand smoke, most perfumes and colognes, going to the doctor, dealing with muddled thinking
Have you tried avoiding fluoride in your diet: yes, recently
If so, which sources of fluoride: I stopped most of my medications, I make my own toothpaste, I distill my own water, I use natural personal products, soap, deodorant, shampoo, I wash all my foods in vinegar and distilled water, I have covered my mattress with a plastic liner, I drive with the windows down a bit
Have you made dietary changes to avoid any other neutrotoxins: I don't eat anything that comes in a box or can, I prepare and wash carefully my own fresh foods.
Have you tried any thyroid specific treatments: I just began supplementing with iodine. I am sill taking synthroid because I don't know what else to do yet.
Your theories or comments: I believe I have been nutritionally deficient since my teens or earlier. I come from obese family and am also obese. I got up to 277 and am down to 228 right now which is the least I have weighted in over 20 years. The nutritional deficiencies are exacerbated by the toxins in my environment and the poor quality of my health care professional's knowledge and education.
Are we missing any important questions:

03/10/2010
First Name: Joan
Age: 48
Male or Female: Female
City: Chardon
State/Province: Ohio
Country: usa
How long have you lived there: 11 YEARS
Where were you born: Willoughby
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 consult on OSHA Compliance
How has Fibro affected your ability to work: Every single moment, every single minute, hour day I am reminded about having Fibro. I can't think, I hurt, I have difficulty walking, dressing, showering....I can't say the words I wish to when consulting with a customer....It is embarrassing
How has Fibro affected your life: I no longer have a life I am in control of. Fibromyalgia is controlling me. I am defeated, I am sad, I hurt, I cannot sleep, I can't do anything without it exhausting me.
What were your first symptoms: I was broadsided in a car accident. I was jolted and have had trouble eve since.
Your age at onset of symptoms: 47
How fast was your rate of decline: At first it was 70 % Gradually getting to 90%.
What are your current symptoms: Fatigue, depression, loss of self, aching feet, toes, numb tores, shooting pains, headaches
Number of years since you developed symptoms of fibromyalgia: Almost 1
Do your symptoms include brain fog: Yes
Number of years since you developed the brain fog: Since accident 4/30/2010
Describe the extent of your brain fog: Feel like I have had a stoke, Words do not come to me, I struggle to say what I mean to, my bills are behind, I can't remember to do anything & lose everything.
Estimate number of doctors you have seen for Fibro related symptoms: 4
Do your doctors tend to focus on all your Fibro symptoms: Now they do. I have a neurologist who diagnosed me.
Do your doctors treat your symptoms individually or collectively: Individually
Describe your experience with doctors: At first it was as if I am fine & they could not find anything wrong.
What remedies or medications have you tried: Neurotin relieves some systoms, Cybalta 60 mg (not sure it helps),Trazadone to sleep, anti-inflammatories, Flexall.
What makes you feel better: I think if I could get a mental jolt & just be oblivious that would work for me.
What makes you feel worse: I am depressed. I am tired all the time yet I take several naps. Some days are worse than others & I cannot walk.
Have you tried avoiding fluoride in your diet: No
If so, which sources of fluoride: unsure
Have you made dietary changes to avoid any other neutrotoxins: unsure
Have you tried any thyroid specific treatments: I have had my thyroid tested numerous times & it is always within range.
Your theories or comments: I hope that information & research can be done. I am a breast cancer survivor & everywhere you go you see something about finding the cure for breast cancer.
Are we missing any important questions: Yes, you did not ask if anyone in my family has fibromyalgia. THe answer -- Yes. Or does it have anything to do with the MTH FR Mutation?

03/10/2010
First Name: Donna
Age: 60
Male or Female: female
City: Frostproof
State/Province: FL
Country: USA
How long have you lived there: 60 years
Where were you born: Maryland
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: no
What is Your Line of Work: I use to manage a large psych practice
How has Fibro affected your ability to work: I am totally disabled
How has Fibro affected your life: It has taken away my life as I know it. Can socialize or work because of the fatigue
What were your first symptoms: burning pain if someone sat to close to me
Your age at onset of symptoms: I think about 4 years old
How fast was your rate of decline: It hit me hard at the age of 55 and I went down hill very quickly with severe fatigue
What are your current symptoms: pain in neck and shoulder radiating down my right arm and horrible fatigue
Number of years since you developed symptoms of fibromyalgia: I think I had symptoms as early as 4 or 5 years old
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 6 years
Describe the extent of your brain fog: I had to stop working because I would just drift off into a trance like
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 or not at all, keep ignoring the IBS and chronic fatigue
Describe your experience with doctors: Mostly uninformed, but I have been lucky with three of them. My PCP really tries hard, but I think she feels helpless. Her sister has Fibro.
What remedies or medications have you tried: just requip for restless leg
What makes you feel better: sleeping
What makes you feel worse: working on what I love to do. The computer and quilting and card making
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: no
Have you tried any thyroid specific treatments: no
Your theories or comments: My theory is that people are treated like a broke down car that has a person on it that has never seen a car
Are we missing any important questions: I dont think so, unless u r interested in the depression that goes along with this

03/08/2010
First Name: A.
Age: 66
Male or Female: Female
City: Philadelphia
State/Province: PA
Country: United States
How long have you lived there: 66 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: No
What is Your Line of Work: I was a Personnel Clerk for Our School District. I retired in 2006.
How has Fibro affected your ability to work:
How has Fibro affected your life: It has caused me to withdraw from many activities.
What were your first symptoms: Pain all over my body and brain fog just to name a few.
Your age at onset of symptoms: 59
How fast was your rate of decline: It took about 4-6 months.
What are your current symptoms: Brain fog; Pain in muscles, joints and allover pain; forgetfulness; mild confusion and inability to concentrate.
Number of years since you developed symptoms of fibromyalgia: I believe 7 or 8 years ago. I believe I was initially misdiagnosed.
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 3 or 4 years.
Describe the extent of your brain fog: I have become somewhat afraid because of my lack of concentration. Especially when I drive; my forgetfullness is also annoying because some of the times when I can't recall certain occasions I become so frustrated.
Estimate number of doctors you have seen for Fibro related symptoms: 3
Do your doctors tend to focus on all your Fibro symptoms: Not yet
Do your doctors treat your symptoms individually or collectively: Individually
Describe your experience with doctors: My experience with the doctors have been ok.
What remedies or medications have you tried: Prednisone (14 days), Percocet, Aspirin (Back & Body). Last week I completed 10 weeks of Aqua Therapy
What makes you feel better: Aqua therapy, Percocet, aspirin
What makes you feel worse: Standing for more than 3 minutes; walking for over 10-15 minutes. Whenever I'm PHYSICALLY tired.
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride: Toothpaste
Have you made dietary changes to avoid any other neutrotoxins: Not really. I have very little appetite right now. I wasn't aware of neurotoxins.
Have you tried any thyroid specific treatments: No
Your theories or comments:
Are we missing any important questions:

03/08/2010
First Name: B.
Age: 25
Male or Female: Female
City: Mason City
State/Province: IL
Country: USA
How long have you lived there: 5 months
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: Right now I'am in college to be a Health Care Administrator.
How has Fibro affected your ability to work: Yes. It has greatly impacted my life for the worse it hurts to lift up a gallon of milk.
How has Fibro affected your life: It has effected my life so much it hurts to think about it I have two small boys and it made me wake up and realize that I'm all they have so I went back to school. I could have been diagnosed with cancer instead of Fybro so I thank my lucky stars I still get to have more time with my boys. The bad side is that I can't get down and play with them. The fact that I can't keep up with them is really depressing. I hurt all the time and it honestly never stops. I cry all the time and I can't sleep or hardly eat. I am tired no matter what exausted and worn out and I don't even have to finish sweeping my floor.
What were your first symptoms: I can remember when I was a little girl 9 or 10yrs old being in pain and crying.
Your age at onset of symptoms: 9-10yrs old
How fast was your rate of decline: I started hurting here or there and then it was about a month later when it took over my body.
What are your current symptoms: Pain, depression, burning, shooting pain, headaches, migraines, nausea, brain fog, not remembering what I was doing once I got in to the car to leave.
Number of years since you developed symptoms of fibromyalgia: 15-16yrs
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 3
Describe the extent of your brain fog: Being in the middle of doing dishes, cooking, homework, anything for that matter and then just standing there trying to remember what the heck you where doing, and how you got there.
Estimate number of doctors you have seen for Fibro related symptoms: 3
Do your doctors tend to focus on all your Fibro symptoms: I had problems with doctors and had to keep changing until I got one of my docs to refer me to a specialist.My doctor now focuses on what hurts the most at the time and I get shots in that spot
Do your doctors treat your symptoms individually or collectively:
Describe your experience with doctors: I have listened to all of them tell my Mom that it was all in my head. I was just depressed. The last doctor I seen and begged him to send me to a specialist he did and I have never been so thrilled to have met a doctor ever. He examined my test results then did a physical and said honey you are not crazy you have Fybro.
What remedies or medications have you tried: Pain meds, hot baths w/epson salt, hot oils, exersise, healthy eating, flexeril,
What makes you feel better: Nothing
What makes you feel worse: cold weather, stress, moving to much, standing still for to 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: I eat more fruits and vegies. I have put less meat in my diet.
Have you tried any thyroid specific treatments: no
Your theories or comments: My theories are stress, and maybe the way we where laying inside our womb. Who really knows why we have to suffer like this but it hurts and I really want someone to come up with a cure so we can all be happy and running and have no pain doing it.
Are we missing any important questions: I wonder if any of these other Fybro patients did they get worse once having a child? Also was there extreme stress in that persons life? I really think that stress has a reason for this pain.

03/05/2010
First Name: tim
Age: 46
Male or Female: m
City: vancouver
State/Province: bc
Country: canada
How long have you lived there: 46yrs
Where were you born: bc
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: service person
How has Fibro affected your ability to work: not sure what i have yet
How has Fibro affected your life: yes no longer vary active don't go out depressed low sex drive live in constant pain
What were your first symptoms: leg pain (muscel and joints)lower back pain forarms chest collar bone jaw wrists
Your age at onset of symptoms: 46
How fast was your rate of decline: 2-3wks
What are your current symptoms: same as above
Number of years since you developed symptoms of fibromyalgia: 2months
Do your symptoms include brain fog: no
Number of years since you developed the brain fog:
Describe the extent of your brain fog:
Estimate number of doctors you have seen for Fibro related symptoms: 3
Do your doctors tend to focus on all your Fibro symptoms: no
Do your doctors treat your symptoms individually or collectively: collectively
Describe your experience with doctors: they do not know what is happening quik to prescripe drugs
What remedies or medications have you tried: arthrotec 75mg
What makes you feel better: above
What makes you feel worse: no antiflamation pills
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 alcahole coffee try to eat more fruit and veg
Have you tried any thyroid specific treatments: no
Your theories or comments: im almost at the end of my rope
Are we missing any important questions:

03/05/2010
First Name: Kim
Age: 54
Male or Female: Female
City: Atlanta
State/Province: GA
Country: USA
How long have you lived there: 54 years
Where were you born: Atlanta, GA
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 landscaper.
How has Fibro affected your ability to work: Pain makes it impossible.
How has Fibro affected your life: Every day is a struggle. My husband is symapathetic but misses his "old" wife, my kids are dismissive, everyone notices the brain fog. I can't work without severe pain. Have been severley depressed and am now very overweight. I can barely play with my grandkids.
What were your first symptoms: depression, then lower back pain, insomnia
Your age at onset of symptoms: 40
How fast was your rate of decline: Got worse and worse over ten years
What are your current symptoms: shoulder, neck, and lower back pain and severe pain in my right hip. insomnia, brain fog
Number of years since you developed symptoms of fibromyalgia: 14 since I really began to notice
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: at least five
Describe the extent of your brain fog: very hard to concentrate, I used to run my own business, got harder and harder to keep the books, I miss really simple details, not to solve simple problems, i.e. forgetting to plug in the something to make it work,
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: my sleeplessness and muscle pain and depression are being treated by my psychiatrist, general doctor used to help with pain but now insists I go to chronic pain management clinics which are very costly, ( I have no job, so no insurance)
Describe your experience with doctors: I went to a general practitioner for pain in my back , hip and shoulder. They x-rayed and found nothing skeletally wrong. They treated pain for ten days then said not to come back to go to chronic pain management center for further treament. I went to a mental health clinic in my community where I could be treated for free due to my income. My psychiatrist gave me cymbalta which I have taken every day for a year now and neurotin which made an amazing difference in the muscle pain in my neck and shoulders. Not much help for the hip. He also gave me trazadone for the insomnia which has changed my life. Being ablel to get a good night sleep is fantastic!
What remedies or medications have you tried: aleve, tylenol arthritis, melatonin, motrin, paxil,hydrocodone, percocet, neurotin, tramadol, cymbalta, magnesium supplements, epsom salts and baking soda baths, massage, acupuncture
What makes you feel better: epsom salts and baking soda baths, relaxing massage, neurotin,trazadone, cymbalta
What makes you feel worse: overexertion, any kind of stress, standing in place, going up and down stairs. 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: not really but I do not cook in aluminum cookware, only stainless steel.
Have you tried any thyroid specific treatments: no
Your theories or comments: I believe I contracted this from a life of unbelievable stress, physical stress in my job and emotional stress in my relationships. I have also had many hard falls which I belive have contributed to the pain.
Are we missing any important questions: Did my mother have fibromyalgia, in my case I don't really know, but I already see signs of it in my 20 year old daughter.

03/05/2010
First Name: Lois
Age: 51
Male or Female: Female
City: Peterborough
State/Province: NH
Country: USA
How long have you lived there: 4 years
Where were you born: Boston, MA
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: yes
What is Your Line of Work: teacher
How has Fibro affected your ability to work: Exhausted by the end of the day. I go home and sleep for hours. Sometimes my foot and back pain lead me to teach sitting in a chair, something I have never done.
How has Fibro affected your life: I have gained nearly 30 pounds in one year. I used to walk daily. This rarely happens now. I used to socialize more. I never watched much tv, but it is the only thing I do with my free time now, due to the pain.
What were your first symptoms: In June 2009, I contracted an illness that swelled all the joints in my body. The swelling was so severe that I had difficulty getting up and down stairs.
Your age at onset of symptoms: 50
How fast was your rate of decline: Once the swelling decreased, I experienced widespread pain and needed to continually stretch and massage my arms, legs, neck, and back. My jaw hurt, and I was very tired all the time. I have had some decline in my ability to focus, but it is not serious. I completed seven post-graduate courses in the weeks following my initial symptoms. My grades were excellent. Mostly I had a lot of trouble sitting at my computer.
What are your current symptoms: About 1.5 weeks ago, I went on Gabapentin after seeing a rheumatologist. The pain has reduced, but I am already experiencing more weight gain. The Gabapentin does not seem to be addressing my fatigue, so I have gone on a supplement regimen to address that, as of three days ago. This seems to be helping a lot.
Number of years since you developed symptoms of fibromyalgia: Less than one.
Do your symptoms include brain fog: Mild- it is more like mental fatigue than fog.
Number of years since you developed the brain fog: Less than one.
Describe the extent of your brain fog: I forget names at times, and struggle to find suitable vocabulary when very tired.
Estimate number of doctors you have seen for Fibro related symptoms: 1
Do your doctors tend to focus on all your Fibro symptoms: Right now, he is trying the Gabapentin. I see him again in a few weeks to review how well it is working.
Do your doctors treat your symptoms individually or collectively: I would say collectively.
Describe your experience with doctors: He diagnosed me- I thought I might have reactive arthritis. But I saw immediately that he was right. He took 45 minutes with me in his office before the exam, taking three pages of notes while asking me questions about my symptoms. He examined me, and even then did not make a definite determination of fibromyalgia. He just said "this is the direction I am going in" and explained that he would put me on the Gabapentin for four weeks and then follow up to see if it is helpful.
What remedies or medications have you tried: Gabapentin- I take only half the dosage. My doctor suggested this, as it causes dizziness. I am also taking a set of supplements from a company called Mannatech.
What makes you feel better: The morning after I took the Gabapentin for the first time, I was amazed that I could get out of bed and not limp in pain to the bathroom. Much of my pain was gone, and I suddenly realized how much pain I had been living with. I have only been on the Gabapentin for 1.5 weeks, and it seems to work pretty consistently if I take it at a regular time (9:30 p.m.). I have been on the supplements for 2 days. I have noticed a significant shift in my energy levels. Today I went for a 20 minute walk after work.
What makes you feel worse: If I take the Gabapentin too late.
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: Yes, regarding medication that I was on before the onset of symptoms: Just before the onset of symptoms, I had to be on a 6 week course of prednisone, because my allergies (to oak trees and other tree pollens, primarily) had become life-threatening. While on the prednisone, I developed oral thrush and I experienced urinary issues that I did not relate to infection at the time. Then I got the swelling in my joints...

03/04/2010
First Name: Denise
Age: 61
Male or Female: Female
City: Roodepoort
State/Province: Gauteng
Country: South Africa
How long have you lived there: 44 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: Secretarial
How has Fibro affected your ability to work: Can't handle stress well
How has Fibro affected your life: I plan my day according to pain and energy levels
What were your first symptoms: Joint pains
Your age at onset of symptoms: 51
How fast was your rate of decline: Rapid
What are your current symptoms: Joint pains; fatigue; brain fog; depression.
Number of years since you developed symptoms of fibromyalgia: 10
Do your symptoms include brain fog: Yes
Number of years since you developed the brain fog: 10
Describe the extent of your brain fog: Forget details until the next day. Struggle to remember words. Get 'information overload' easily.
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: Most dismiss FM by just saying nothing when I mention it. They tend to think within their own speciality and not consider any information or symptoms outside it.
What remedies or medications have you tried: Massage; reflexology; diet; chiropractic; rest; supplements.
What makes you feel better: Chiropractic.
What makes you feel worse: Vigorous massage
Have you tried avoiding fluoride in your diet: Yes
If so, which sources of fluoride: Tap water; prescription drugs; processed food.
Have you made dietary changes to avoid any other neutrotoxins: No
Have you tried any thyroid specific treatments: Occasionally take Tertroxin to boost effects of Efexor antidepressants.
Your theories or comments: The main thing that helps is to avoid unnecessary stress.
Are we missing any important questions: Perhaps you could include some questions about how much stress people had when diagnosed, compared with the present.

03/03/2010
First Name: Rebecca
Age: 38
Male or Female: Female
City: Perth
State/Province: WA
Country: Australia
How long have you lived there: 35 years
Where were you born: Sydney
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: yes part time
What is Your Line of Work: administration
How has Fibro affected your ability to work: HAve some days where I can't work
How has Fibro affected your life: Made me much less active
What were your first symptoms: exhaustion
Your age at onset of symptoms: 30
How fast was your rate of decline: slow
What are your current symptoms: exhaustion, swelling hands and feet, aching body, hair loss, pain all over, headaches, IBS, lack of concentration, depression
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: 5
Describe the extent of your brain fog: Difficulty concentrating, memory problems, not all the time, but when it happens it is quite bad
Estimate number of doctors you have seen for Fibro related symptoms: 7
Do your doctors tend to focus on all your Fibro symptoms: no, only 1 has looked at the whole picture
Do your doctors treat your symptoms individually or collectively: Most Dr's focus on one or two.
Describe your experience with doctors: At first it was considered all in my head, and one rhumatologist told me to take panadol and deal with it. It was difficult to find a Dr that understood.
What remedies or medications have you tried: currently on low dose naltrexone, tried pregabilin - terrible, tried meditation, pilates, hydrotherapy, various vitamin supplements,
What makes you feel better: sleep
What makes you feel worse: over activity and emotional 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: none
Have you tried any thyroid specific treatments: no
Your theories or comments:
Are we missing any important questions:

03/03/2010
First Name: Chrissie
Age: 52
Male or Female: F
City: Manchester
State/Province: Lancs
Country: United Kingdom
How long have you lived there: all life
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: y
What is Your Line of Work: i teach but only a 4 hours a week and find that very difficult
How has Fibro affected your ability to work: find it impossible to work more than a few hours in a week
How has Fibro affected your life: it's virtually ruined it
What were your first symptoms: pain in muscles difficulty with balance
Your age at onset of symptoms: 43
How fast was your rate of decline: gradually has got worse as Ive got older I have put on a lot of weight
What are your current symptoms: Right now - pain in arms , legs shoulders and feeling very tired
Number of years since you developed symptoms of fibromyalgia: 9-10
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 9 yrs
Describe the extent of your brain fog: Mainly much slowere at doing things.Mental maths very difficult, word finding difficulties etc
Estimate number of doctors you have seen for Fibro related symptoms: 3-4
Do your doctors tend to focus on all your Fibro symptoms: They barely appreciate the fact that I have FMS
Do your doctors treat your symptoms individually or collectively: more individually
Describe your experience with doctors: I usually come away feeling that they have no understanding of the condition or think I am exaggerating etc
What remedies or medications have you tried: Thyroxine, Guaiffenessin, Amyltriptoline
What makes you feel better: Guaiffenessin didn't seem to help. Warm baths help with pain
What makes you feel worse: Stress and physical exertion
Have you tried avoiding fluoride in your diet: not until 3 days ago
If so, which sources of fluoride: I have dental flourosis form teens.I do not live in a fouridated area of the UK but for years used flouridated toothpaste and until a year ago rinsed with flouridated mouth wash I also drank very large quantities of tea (ey 8-10 mugs per day) until 3 days ago
Have you made dietary changes to avoid any other neutrotoxins: Have tried to avoid aluminium cookware.Try to eat as much organis food as I can
Have you tried any thyroid specific treatments: Yes they help me to feel a bit more energetic at first
Your theories or comments: I have researched and played around with many possible theories over the years but this one seems more elegant
Are we missing any important questions: I think that you should be asking about our children eg my teenage son has ADHD and dental phlorosis _ why are you collecting this data anyway?

03/02/2010
First Name: Karen
Age: 35
Male or Female: female
City: Forest
State/Province: Ontario
Country: Canada
How long have you lived there: 6 months
Where were you born: London Ontario
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: Full time mother of four small children and homeschooling teacher
How has Fibro affected your ability to work: A lot!! I feel like a failure. I can barely function and nobody can really understand why.
How has Fibro affected your life: Every day is a struggle to even want to live anymore in such a painful body. But with God's help - I take it day by day.
What were your first symptoms: Pain in my upper arms, I couldn't raise them above my head.
Your age at onset of symptoms: 18
How fast was your rate of decline: pretty steady so that by age 25 I felt like was run over by five buses every day.
What are your current symptoms: All 18 tender points are very painful - but the most severe are my knees, arms, neck and total lack of energy. and my short term memory failure. Not to mention the insomnia.
Number of years since you developed symptoms of fibromyalgia: The latest symptom to arrive is the insomnia - about one year ago now it became really hard to sleep.
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 quiet often can't remember what I am to do that day, to take my natural supplements, forgetting about appointments, starting supper and forget to finish (sometimes supper on the stove!!) make tea for company but never give it to them. All kind of embarrassing things.
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: I refuse to have them treat me with drugs, so we haven't discussed any treatments. They know not to ask me.
Describe your experience with doctors: They don't really understand what it is like and that drugs are not the answer, so I've looked into natural solutions but I can't afford it.
What remedies or medications have you tried: Colloidal Silver, parasite cleanses, colon cleanses, kidney cleanses, melatonin for sleep, and some food avoidances.
What makes you feel better: mostly avoiding sugar, wheat and chocolate, melatonin helps a little for sleep.using those streches ropes helps keep the muscles less stiff.
What makes you feel worse: the wrong food and no sleep.
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
Your theories or comments: I felt great until a month or two after my car accident
Are we missing any important questions: What about exercise?

03/01/2010
First Name: kathy
Age: 49
Male or Female: female
City: daytona beach
State/Province: florida
Country: usa
How long have you lived there: 5 years
Where were you born: washington dc
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: yes
What is Your Line of Work: office assistant
How has Fibro affected your ability to work: some what
How has Fibro affected your life: yes
What were your first symptoms: muscle twitching, muscle pain, neck pain, upper back pain, and on and on
Your age at onset of symptoms: 30
How fast was your rate of decline: first time it was severe, went to numerous doctors, had numerous test
What are your current symptoms: mild muscle twitching, even in the stomach area, pain that is coming and going in my shoulder area, tenderness on a majority of my body.
Number of years since you developed symptoms of fibromyalgia: about 18-20
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 18
Describe the extent of your brain fog: feel like I'm confused sometimes, have felt like I was going to pass out, somewhat dizzy
Estimate number of doctors you have seen for Fibro related symptoms: 2
Do your doctors tend to focus on all your Fibro symptoms: haven't been to a doctor in about 10 or more years for it.
Do your doctors treat your symptoms individually or collectively: no
Describe your experience with doctors: at first they thought I was suffering with anxiety or depression.
What remedies or medications have you tried: none
What makes you feel better:
What makes you feel worse:
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: not really
Have you tried any thyroid specific treatments: yes, synthyroid
Your theories or comments: stop taking syntyroid about 2 years ago, every time I went to the doctor they said my TSH level was good. But have so many symptoms of fibromyalgia and hypothyroidism.
Are we missing any important questions:

03/01/2010
First Name: s.
Age: 52
Male or Female: female
City: los angeles
State/Province: ca
Country: usa
How long have you lived there: life
Where were you born: los angeles
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: y
What is Your Line of Work: Home care
How has Fibro affected your ability to work: yes
How has Fibro affected your life: my mobility has been effected with respect to stairs and movement on my right side
What were your first symptoms: rib pain, right side, with trigger points? Not treated with injections or accupuncture,PT negative bone density scans
Your age at onset of symptoms: 50
How fast was your rate of decline: 1 year.
What are your current symptoms: pain, that is on my right side, now also my right foot
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: Im not sure if this is due to lack of sleep with side pain it is hard to 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...
Do your doctors treat your symptoms individually or collectively: no
Describe your experience with doctors: they dont have a clue.
What remedies or medications have you tried: Accup, PT, have not taken meds.
What makes you feel better: nothing
What makes you feel worse: turning to the right is limited.
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: this is post surgery , i have even pain in the incision area. when pain is intense it radiates on the left side of my shoulder and neck. not cardiac in feeling.
Are we missing any important questions:

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