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Fibromyalgia Questionnaire & Results

Latest Update: 07/02/2009 

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.

 

4 QUESTIONNAIRE COMPLETED DATA FORMS FOR July 2009

07/02/2009
First Name: Maryanne
Age: 56
Male or Female: Female
City: Petal
State/Province: MS
Country: USA
How long have you lived there: 5 years
Where were you born: Hattiesburg, MS
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 teacher. I retired.
How has Fibro affected your ability to work: I have little energy and a lot of pain so even simple chores take longer
How has Fibro affected your life: four years
What were your first symptoms: pain and stiffness all over
Your age at onset of symptoms: 53
How fast was your rate of decline: slow
What are your current symptoms: fatigue, pain, sleeplessness, weight gain, depression
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: two
Describe the extent of your brain fog: I am forgetful, I can't concentrate on any one task, I can't remember simple words in a conversation or names I should be able to remember.
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: collectively
Describe your experience with doctors: First doctor showed concern and helped by offering different medications. Second doctor is now concentrating on hormone levels as a method of helping with pain.
What remedies or medications have you tried: cymbalta, lyrica, neurontin, ultram, massage therapy, aqua therapy, heat therapy, contend machine, peppermint oil, bengay
What makes you feel better: using the contend machine with electric nodes on parts of body, bengay, peppermint oil
What makes you feel worse: staying in one position too long--trying to sleep at night
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, gave up artificial sweetners
Have you tried any thyroid specific treatments: no
Your theories or comments: none
Are we missing any important questions: no

 

07/01/2009
First Name: Irene
Age: 70
Male or Female: female
City: Sydney
State/Province: NSW
Country: Australia
How long have you lived there: 40 years
Where were you born: Scotland
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: no
What is Your Line of Work: teaching
How has Fibro affected your ability to work: Impossible to worksince 1994
How has Fibro affected your life: Devastated my life
What were your first symptoms: general fatige, hair loss
Your age at onset of symptoms: had symptoms all my life
How fast was your rate of decline: sudden intense back spasms
What are your current symptoms: muscle pain, insomnia, irritable bowel syndrome, hot flushes, hair loss, weight gain, sinus, chronic throat irritation and dry cough, anal fissures and genital discomfort, and many other minor symptoms
Number of years since you developed symptoms of fibromyalgia: this current illness 13 years
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: not sure
Describe the extent of your brain fog: often have difficulty in remembering a word or name,improving
Estimate number of doctors you have seen for Fibro related symptoms: 2
Do your doctors tend to focus on all your Fibro symptoms: no
Do your doctors treat your symptoms individually or collectively: individually
Describe your experience with doctors: hopeless
What remedies or medications have you tried: pain killers eg aspirin, Nurofen and Panadol and heat rubs
What makes you feel better: Bed rest, hot weater bottle and aspirin
What makes you feel worse: exercise and tension
Have you tried avoiding fluoride in your diet: yes for the last 6 weeks
If so, which sources of fluoride: tap water
Have you made dietary changes to avoid any other neutrotoxins: yes processed meat containing sodium nitrates and nitrites
Have you tried any thyroid specific treatments: no
Your theories or comments: Absolutely convinced the processed meat is the cause as the illness returned after I included a large amount for 2 years about 1992 at which time I was in perfect health.
Are we missing any important questions: My muscle pain has followed a pattern of moving downwards in 3 year stages and at present is in my hip and pelvic area as it did the previous time I had the condition.I fully expect to recover from this condition if I live long enough. Great to hear that someone is interested.

 

07/01/2009
First Name: Shirley
Age: 58
Male or Female: Female
City: Edmonton
State/Province: Alberta
Country: Canada
How long have you lived there: 58 Years
Where were you born: Edmonton
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 Police Officer
How has Fibro affected your ability to work: Cannot work
How has Fibro affected your life: I am constantly in pain. I am fatigued to the level of where I am not motivated to do anything. I have no motivation to perform any task or leave the house for that matter. It is an effort to put on make-up and go out and meet with a friend.
What were your first symptoms: Migraine Headaches Fatigue and sore muscles.
Your age at onset of symptoms: 33-34
How fast was your rate of decline: Fairly Quickly
What are your current symptoms: Constant pain and fatigue. Restless Leg Syndrome
Number of years since you developed symptoms of fibromyalgia: 25 years
Do your symptoms include brain fog: Yes
Number of years since you developed the brain fog: 15 Years
Describe the extent of your brain fog: Progressively gets worse as the day goes on. Extremely bad at the end of the day and into the evening.
Estimate number of doctors you have seen for Fibro related symptoms: 5-7
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: My GP tends to minmimize my symptoms and simply suggests that I exercise and go to the gym. My Diagnosing Specialist advised me that he had no time for further visits because he is too busy. My second Specialist says, "come and see me whenever feel a need", but it takes 2-3 months due to his very busy practice. Most doctors that I initially seen in the mid 80's had to idea what was wrong with me. In fact, one Neurologist concluded in this reporting back to my referring doctor that I was suffering from "hypochondriacism"!
What remedies or medications have you tried: None.
What makes you feel better: Nothing.
What makes you feel worse: Dealing with situations that I always consider stressful, but really are not. I worry about everyone else's problems. Not getting enough rest and that is difficult because I do not know what it is like to sleep for more than 2-3 hours at a time.
Have you tried avoiding fluoride in your diet: No, no one ever told me to do this!
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, because I now have an under active thyroid. I currently take Synthroid.
Your theories or comments: While working as a police officer, I was kicked at the back of the head while transporting a very violent prisoner to Cells. I have never been the same since that trauma to the back of the head. This occurred in 1981, and I was not properly dianoised until 2001.
Are we missing any important questions: What do you feel has caused Fibromyalgia?

 

07/01/2009
First Name: Charlotte
Age: 60
Male or Female: female
City: Ingersoll
State/Province: Ontario
Country: Canada
How long have you lived there: 5 years
Where were you born: London Ontario Canada
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: no
What is Your Line of Work:
How has Fibro affected your ability to work: yes
How has Fibro affected your life: yes
What were your first symptoms: Unexplain pain in diferent pats of my body at diferent times
Your age at onset of symptoms: thirty
How fast was your rate of decline: not bad till late forties
What are your current symptoms: pain, fatiuge allways guilt be cause I am not doing what I should be doing
Number of years since you developed symptoms of fibromyalgia: thirty yaers
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 3
Describe the extent of your brain fog: I forget simple words to discribe thing and what I did the day befor
Estimate number of doctors you have seen for Fibro related symptoms: 1 doctor specialist for fibro seen once
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: some do not believe in fibro one doctor prscibed Lyrica but it did not help it put bad thoughts in my head
What remedies or medications have you tried: Lyrica, phecet shots Furinal
What makes you feel better: at this point I do not know
What makes you feel worse: having to do thing when I amnot up to it
Have you tried avoiding fluoride in your diet: always
If so, which sources of fluoride: tap water,pesticides ?
Have you made dietary changes to avoid any other neutrotoxins: most days I am just glad I eat in the past was always conciuse of what I ate
Have you tried any thyroid specific treatments: yes now taking low does of El Troxin 0.1mg
Your theories or comments: there has to be some thing that I coud do or take to help my self
Are we missing any important questions: I was a very active livly but the last seven or more years have got the best of me!

 

 

Case Studies from Previous Months...
June 2009 case studies.
May 2009 case studies.
April 2009 case studies.
March 2009 case studies.
February 2009 case studies.
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December 2008 case studies.
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July 2008 case studies.
June 2008 case studies.
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April 2008 case studies.

 

Archived Case Studies...
March 13 - April 12, 2008
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August 22, 2006
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