Fibromyalgia Questionnaire & Results
Latest Update: 09/08/2010
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.
11 QUESTIONNAIRE COMPLETED DATA FORMS FOR September 2010
09/08/2010
First Name: Julie
Age: 49
Male or Female: female
City: Loma Linda
State/Province: CA
Country: United States
How long have you lived there: 5 months
Where were you born: Duluth, Minnesota
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: Stocking groceries, heavy lifting
How has Fibro affected your ability to work: I have so much pain all over, my job is getting almost impossible to do
How has Fibro affected your life: Don't have any energy to complete daily tasks because of the pain and fatigue
What were your first symptoms: back and neck, now it is all over especially my knees and lower spine
Your age at onset of symptoms: 42
How fast was your rate of decline: that last month I have noticed the pain getting considerably worse
What are your current symptoms: Aches and stiffness from neck to my feet
Number of years since you developed symptoms of fibromyalgia: 7 years
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: the last 3 years
Describe the extent of your brain fog: forgetting where I put things, can't remember what I did from day to day, I pretty much don't do anything when I am not working
Estimate number of doctors you have seen for Fibro related symptoms: None
Do your doctors tend to focus on all your Fibro symptoms: Haven't been to a doctor for it yet
Do your doctors treat your symptoms individually or collectively: NA
Describe your experience with doctors: NA
What remedies or medications have you tried: Tramadol
What makes you feel better: Tramadol
What makes you feel worse: The work I do is hard labor and heavy lifting
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 just want the pain to stop, most days I don't even want to get out of bed
Are we missing any important questions: NO
09/07/2010
First Name: Nicky
Age: 41
Male or Female: Female
City:
State/Province: Staffordshire
Country: England
How long have you lived there: on and off 41 years
Where were you born: yes
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: Admin
How has Fibro affected your ability to work: In constant pain with back sitting in an office chair for 7.5hours a day is very difficult
How has Fibro affected your life: Unable to do as much as before, no energy, pain gets to severe, so just have to rest when its bad
What were your first symptoms: back pain and aching spreading from back across body, servere shoulder pain
Your age at onset of symptoms: 40
How fast was your rate of decline: quite quick
What are your current symptoms: servere back pain that has aching pains spreading throughout body - severe shoulder pain goes down arms - pain in feet - no energy
Number of years since you developed symptoms of fibromyalgia: 6months - 1 year
Do your symptoms include brain fog: no
Number of years since you developed the brain fog:
Describe the extent of your brain fog:
Estimate number of doctors you have seen for Fibro related symptoms: 2
Do your doctors tend to focus on all your Fibro symptoms: still early days, the consultant has referred me to chronic pain clinic.. waiting for appointment
Do your doctors treat your symptoms individually or collectively:
Describe your experience with doctors: feel the consultant has washed his hands of me - my GP is smypathectic
What remedies or medications have you tried: Codiene, tramodol - both make my legs feel they have no blood in them and makes my head light headed
What makes you feel better: nothing
What makes you feel worse: doing much - STRESS! sitting for long periods
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 just feel there is not enough knowledge or research on this condition - its making my life miserable and would like to take part in any trials if available
Are we missing any important questions:
09/07/2010
First Name: amy
Age: 38
Male or Female: female
City: perrysburg
State/Province: oh
Country: usa
How long have you lived there: 38 years
Where were you born: toledo
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: no
What is Your Line of Work: health field
How has Fibro affected your ability to work: yes
How has Fibro affected your life: yes
What were your first symptoms: soreness stiffness fatigue
Your age at onset of symptoms: 36
How fast was your rate of decline: rapid
What are your current symptoms: bad stiff, sore,fatigue,brain is foggy, mind is not clear
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: forget things easily and that is almost anything that is told to me i forget
Estimate number of doctors you have seen for Fibro related symptoms: 5
Do your doctors tend to focus on all your Fibro symptoms: some
Do your doctors treat your symptoms individually or collectively: individually
Describe your experience with doctors: good...one says not fibro but 4 others say yes fibro
What remedies or medications have you tried: cymbalta flexeril voltaren magnesium vitamin d xanax etc
What makes you feel better: sleep
What makes you feel worse: being awake
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: yes added more berries and water
Have you tried any thyroid specific treatments: no
Your theories or comments: someone needs to find a cure
Are we missing any important questions: ppl need to take this more seriously
09/06/2010
First Name: audrey
Age: 52
Male or Female: female
City: oslo
State/Province: oslo
Country: norway
How long have you lived there: 24 years
Where were you born: Ireland
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: childcare
How has Fibro affected your ability to work: yes
How has Fibro affected your life: too many ways to count mostly no energy and pain
What were your first symptoms: neck pain
Your age at onset of symptoms: 26
How fast was your rate of decline: not very fast
What are your current symptoms: IBS migraine neck pain pain from head to toes stomack problems
Number of years since you developed symptoms of fibromyalgia: 26
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: dont know
Describe the extent of your brain fog: sometimes cant remember names of people I know well cant remember what I am doin
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: ok
What remedies or medications have you tried: cant remember
What makes you feel better: nothing
What makes you feel worse: dont know
Have you tried avoiding fluoride in your diet: only in toothpaste no fluoride in water
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: no
Have you tried any thyroid specific treatments: no
Your theories or comments:
Are we missing any important questions:
09/05/2010
First Name: A Nelson
Age: 58
Male or Female: male
City: spring
State/Province: TX
Country: USA
How long have you lived there: 20 years
Where were you born: Pasadena, CA USA
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: no
What is Your Line of Work: computers and electronic pre-press in the printing field.
How has Fibro affected your ability to work: Problems with pain in hands. Unable to sleep at night. Pain distracts and effects short term memory.
How has Fibro affected your life: I am rarely any place other than my house. I do not entertain people. I do not sleep with my wife, due to not being able to sleep throughout the night
What were your first symptoms: joint and muscular pain- chronic
Your age at onset of symptoms: 49 years
How fast was your rate of decline: Extreme, within months disabled, currently on disability, have been in the hospital every year at least once for the last ten years.
What are your current symptoms: Intra muscular pain in hands, wrists, neck, back, hips, thighs, calves and feet and all joints.
Number of years since you developed symptoms of fibromyalgia: 9 years
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 11 years
Describe the extent of your brain fog: Difficult to concentrate due to unclear thinking and headaches
Estimate number of doctors you have seen for Fibro related symptoms: 16
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: only help given has been glutathione injections (subdermal), pain meds and sleeping meds.
What remedies or medications have you tried: glutathione injections
What makes you feel better: Hot baths, hot pads, essential oils which numb the pain, and morophine. Over the counter pain meds do not work.Walking
What makes you feel worse: Not numbing the pain
Have you tried avoiding fluoride in your diet: yes (water filter)
If so, which sources of fluoride: tap water
Have you made dietary changes to avoid any other neutrotoxins: Chelation therapy to remove heavy metals
Have you tried any thyroid specific treatments: kelp tablets a long time ago.
Your theories or comments: I believe the pain I am experiencing is cause by calcification, brought to my muscles and joints by the nano bacterium sanguineum. The best way to reverse this I am not sure of, but I am trying EDTA, MSM and Magnesium.
Are we missing any important questions:
09/05/2010
First Name: Becca
Age: 24
Male or Female: female
City:
State/Province: MA
Country: USA
How long have you lived there: 24yrs
Where were you born:
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: yes
What is Your Line of Work: Retail management, high task, heavy responsibility, 40+ hours on my feet.
How has Fibro affected your ability to work: i struggle every single day to keep my head above water and do my job to the best of my ability...
How has Fibro affected your life: there is not enough space here to explain it all... I have no life. pain and fatigue have taken it away. just about every syptom you could find due to fibro, I have. I also believe i suffer from Ehler's-Danlos Syndrome (a hypermobility disorder) and of course, depression, painick/aniety, 2-3 hours of sleep every night... the list goes on and on...
What were your first symptoms: too young to really remember, probably my INTENSE growing pains in my legs as a kid.
Your age at onset of symptoms: maybe.... 3? 4?
How fast was your rate of decline: in my 24 years, emotional, verbal, messed up things have happened and I struggled to make a life for myself, I believe I have been on the decline since I was a child...
What are your current symptoms: Chronic, widespread pain, tenderness and debilitating fatigue. and about a million others....
Number of years since you developed symptoms of fibromyalgia: fibro about 5
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: about 1-2
Describe the extent of your brain fog: somedays I cant even formulate my sentences. I cant get my mouth to work. While shopping in the supermarket, I turned a corner with my cart and tried to put my BLINKER on.
Estimate number of doctors you have seen for Fibro related symptoms: up to three now, soon to be five or 6.
Do your doctors tend to focus on all your Fibro symptoms: yes, because I did two months of research before booking with the right doctors. yet I still have yet to acquire an actual DX!
Do your doctors treat your symptoms individually or collectively: no treatment to speak of yet.
Describe your experience with doctors: frustrating. long. drawn out.
What remedies or medications have you tried: Vitamin D, 50,000 units monthly. Amitriptyline for sleep. no go.
What makes you feel better: heating pad! running hot water over my hands when the ache and burn.
What makes you feel worse: cold. stress. bad weather. crying. financial issues. guilt. pressure. non-gentle hugs.
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: tested thyroid, came out normal.
Your theories or comments: BE INFORMED! if you are not 100% as knowledgable as you can be, you will be walked all over. KNOW YOUR ILLNESS INSIDE AND OUT! UPS AND DOWN!
Are we missing any important questions: what different types of pain we suffer from. about all the other symptoms we go thru.
09/04/2010
First Name: Letitia
Age: 44
Male or Female: female
City: Gary
State/Province: Indiana
Country: United States
How long have you lived there: 4 mths
Where were you born: Chicago,Ill.
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: No
What is Your Line of Work: I'm a Certified Nurse Assistant
How has Fibro affected your ability to work: I cant do the lifting anymore,or even assisting in giving baths,kneeling ,stooping, bending, stretching it all seems to hurt.
How has Fibro affected your life: It is very depressing to me that I cant do even simple things aroud the house lately,I have to rest more than before.All I want to do is lay in the bed,and even then it hurts me to do that.I dont sleep much at night and It seems I hurt more at night.
What were your first symptoms: My neck and shoulders hurted all the time.I couldnt complete my tasks at work without crying of being in so much pain
Your age at onset of symptoms: Dr. put in report I had stage 2
How fast was your rate of decline: It seemed I declined faster once I started taking medication to help to ease the onset of pain.
What are your current symptoms: I'm still hurting more my neck and shoulders always hurt.Now the pain has seemed to go down to my whole lower part of my body.
Number of years since you developed symptoms of fibromyalgia: I just got diagnosed last year 10/2009
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: just started happening.
Describe the extent of your brain fog: Forgetfullness,
Estimate number of doctors you have seen for Fibro related symptoms: 2
Do your doctors tend to focus on all your Fibro symptoms: Yes I believe so.
Do your doctors treat your symptoms individually or collectively: I believe collectively
Describe your experience with doctors: My primary Dr. is very attentive to my pain and emotional issues
What remedies or medications have you tried: Lyrica,valium,vicodin,amirex,tramodol,norco,predisolone,Prozac
What makes you feel better: At this point none
What makes you feel worse: Lyrica
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: yes
Have you tried any thyroid specific treatments: no
Your theories or comments: I have alot of muscle spasms,and pain spasms as well.What does this come from?
Are we missing any important questions: Is there any thing else that could make me feel better?
09/04/2010
First Name: jacqueline
Age: 41
Male or Female: female
City: Cape town
State/Province: western cape
Country: south africa
How long have you lived there: 20 yrs
Where were you born: liverpool, uk
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: yes
What is Your Line of Work: company director
How has Fibro affected your ability to work: It is a daily struggle , presently 10-14 days per month completley unable to function.
How has Fibro affected your life: Ruined 2 marriages, relationships with family, friends & my own children. It has made me lose faith in medical people, chronic depression and feelings of utter helplessness have palagued me for over 20 yrs, lose faith in my own mental health and worst of all i have distanced myself from God and all things good as i felt so utterly incapacitated physically and often mentally.
What were your first symptoms: i contracted a number of STD's from my fiance who was a seaman and was put on strong antibiotics at the age of 18, around this time it all started.
Your age at onset of symptoms: 18
How fast was your rate of decline: up and down right up to date but extremely bad this past 3 years.
What are your current symptoms: all as medical history above - daily with very little "good" days
Number of years since you developed symptoms of fibromyalgia: 25
Do your symptoms include brain fog: yes very much
Number of years since you developed the brain fog: 20
Describe the extent of your brain fog: i am usually not able to recall the date, childrens birthdays, do simple math. etc
Estimate number of doctors you have seen for Fibro related symptoms: 30
Do your doctors tend to focus on all your Fibro symptoms: these days they immediatly write a script for lyrica or tripiline or an antidepressant and maybe a painkiller
Do your doctors treat your symptoms individually or collectively: they do not know what to say/do as they do not understand it, yes they focus on what i am most complaining about on that visit.
Describe your experience with doctors: frustrating and a waste of time and of my hard earned money which i struggle to earn in my condition.
What remedies or medications have you tried: lyrica, tripiline, antidepressants, every suppliment under the sun, coloics, accupuncture, water fasting - 30 days , faith healing, physio, excercises.
What makes you feel better: hard to say as this condition for the first 20 yrs would come and go often making you think a remedy was working only to find later it did not next time round. Undoubtadly colonics & water fasting ( i use reverse osmosis water for 30 days !! ow i know why it made me a new person!!!) were BEST. But symptoms always returned when eating normally again within 3 -4 months.
What makes you feel worse: i could write a book on this, almost everything, smoking & akcahol much worse & processed foods, stress, excercise (when symptoms in full bloom) lack of sleep.
Have you tried avoiding fluoride in your diet: no but after reading earth clinic on fluoride poisoning i am starting RIGHT NOW.
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: yes, tried so hard juicing or plain water fasting helps a great deal.
Have you tried any thyroid specific treatments: a chinese medicine ' throid thru" v expensive, helped a little but not sure as took a lot of other suppliments whey, msm, 5hTP, magnesium, vit B , vit c etc all same time.
Your theories or comments: Thank you SO MUCH for this site, i know that i have stage 4 fluoride poisoning and will let you know 3-4 weeks later after i have done the necessary my result.
Are we missing any important questions: i do not think so. God Bless you in all you do , i am certain you have found the cause of fybromyalgia/CFS
09/01/2010
First Name: Jo
Age: 40
Male or Female: f
City: New Plymouth
State/Province: Taranaki
Country: NZ
How long have you lived there: 40yrs
Where were you born: NZ
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: chronic insomnia since childhood,pain
What were your first symptoms: insomnia at 8
Your age at onset of symptoms: 8
How fast was your rate of decline: slow but came on worse after pregnancy 11yrs ago
What are your current symptoms: insomnia,pain in joints,memory problems,sensitivity to light,sound,touch
Number of years since you developed symptoms of fibromyalgia: right from early childhood...a few yrs old
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 10
Describe the extent of your brain fog: bad short term memory,get into a daze sometimes
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: only insomnia with pills..is uninformed
Describe your experience with doctors: infuriating...do not bother to learn about it and treat it
What remedies or medications have you tried: natural remedies and scripts for sleeping..cod liver oil for joint pains..works well
What makes you feel better: keeping fit
What makes you feel worse: cold
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: no
Have you tried any thyroid specific treatments: no
Your theories or comments: always waking from dream states and often dreaming while being aware that I am just dreaming sometimes
Are we missing any important questions: don't think so
09/01/2010
First Name: Sarah
Age: 34
Male or Female: female
City: London
State/Province: London
Country: UK
How long have you lived there: 5 1/2 years
Where were you born: no
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: yes
What is Your Line of Work: social work
How has Fibro affected your ability to work: in the past difficult with time off work
How has Fibro affected your life: made me more aware of looking after my body
What were your first symptoms: difficult to say but maybe muscle pain and fatigue
Your age at onset of symptoms: 27
How fast was your rate of decline: rapid
What are your current symptoms: nil
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: 7
Describe the extent of your brain fog: only get it occasionally when going down hill. but is similar to vagueness and poor memory
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: in beginning individually before original diagnosis but now does not treat any.
Describe your experience with doctors: my doctor is very open minded
What remedies or medications have you tried:
What makes you feel better: Healthy lifestyle. Avoid certain foods, make sure exercise, keeping active and engaging with people
What makes you feel worse: rubbish, fatty food and no exercise. Stress has major impact
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 believe that it can be managed but not cured. I work in mental health and I have seen a lot of people who choose not to actively find other avenues or lifestyle choices to help themselves beat this. They expect a cure to be given to them on a plate because they don't want to take full responsibility for their own body
Are we missing any important questions:
09/01/2010
First Name: marie
Age: 43
Male or Female: female
City: rocky
State/Province: ab
Country: canada
How long have you lived there: 42 years
Where were you born: same
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: no
What is Your Line of Work: clerical
How has Fibro affected your ability to work: yes
How has Fibro affected your life: yes
What were your first symptoms: viral pericarditis (2 times), several surgeries followed by joint & muscle pain and foggy brain.
Your age at onset of symptoms: 37
How fast was your rate of decline: 5 years
What are your current symptoms: joint, muscle and spine pain, headaches, sinus and ear issues along with foggy brain.
Number of years since you developed symptoms of fibromyalgia: 5 years
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 7 years
Describe the extent of your brain fog: severe, it is similar to dementia, can't remember from one minute to the next. Also has affected my speach and command of the english language.
Estimate number of doctors you have seen for Fibro related symptoms: 20
Do your doctors tend to focus on all your Fibro symptoms: no
Do your doctors treat your symptoms individually or collectively: They don't treat them at all.
Describe your experience with doctors: Horrnedous, they are rude uncaring and treat me like a person that is depressed or a hypocondriac.
What remedies or medications have you tried: anti-inflammatories
What makes you feel better: rest and time.
What makes you feel worse: cold or damp weather and physical exertion.
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: sugars, white flours, msg, salts.
Have you tried any thyroid specific treatments: no
Your theories or comments: sick, tired and frustrated with drs.
Are we missing any important questions:
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