Fibromyalgia Questionnaire & Results

Latest Update: 06/17/2013

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.

Since 2006, we have received over 2,000 completed questionnaire forms, which can reviewed below and in our fibromyalgia archives section (see links at the bottom of this page). Our 2008 SUMMARY OF QUESTIONNAIRES is a great way to explore some of best, uncensored advice and feedback that we have received from 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.

7 QUESTIONNAIRE COMPLETED DATA FORMS FOR June 2013

06/17/2013
First Name: Cindy
Age: 44
Male or Female: female
City: Sun City
State/Province: AZ
Country: USA
How long have you lived there: 16 years
Where were you born: Omaha NE
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 chemical operator for Pharmacia/Upjohn then later Pfizer
How has Fibro affected your ability to work: I am on full SSDI disability, I can no longer work due to fatigue, pain, brain fog etc
How has Fibro affected your life: I can no longer do many of the things I enjoyed. Even visiting friends is hard on me due to pain and trouble concentrating

History: Diabetes 2, hypothyroid, DDD, MDD, osteoporosis, carpel tunnel bilateral, L5-S1 radiculopathy and C6-C7, hypothyroid
Did You Ever Have A Long Lasting Virus: Shingles twice and chickenpox once
What were your first symptoms: 1994
What are your current symptoms: Pain, brain fog, tingling, numbness, overall fatigue, bloating, diarrhea constipation, cant sleep at times...others sleep constantly
Your age at onset of symptoms: approx 25 to 27 years old
How fast was your rate of decline: Slow at first then increasingly faster as time went on
What are your current symptoms: Pain, brain fog, tingling, numbness, overall fatigue, bloating, diarrhea constipation, cant sleep at times...others sleep constantly
Number of years since you developed symptoms of fibromyalgia: 19yrs
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: off and on for 7 yrs
Describe the extent of your brain fog: Cant do simple math at times, forget my meds, forget what day it is, have to make lists etc
Estimate number of doctors you have seen for Fibro related symptoms: currently have PCP,neurologist, PM, rheumatogolist, psychiatrist, gastroemyerologist
Do your doctors tend to focus on all your Fibro symptoms: Yes, I encourage them to treat me as a whole
Do your doctors treat your symptoms individually or collectively: Collectively mostly, i encourage collective treatment
Describe your experience with doctors: I have searched and researched for all my doctors. Has taken long time to find those I trust
What remedies or medications have you tried: Started with tricyclics ie amytriptiline, gabapentin, lyrica, savella, prozac, narcotics up to including fentanyl
What makes you feel better: Rest, narcotics, muscle relaxers, massage therapy
What makes you feel worse: Activity, STRESS, doing too much in a short period of time
Have you tried avoiding fluoride in your diet: no, drink city water but its not fluoridated
If so, which sources of fluoride: Avoid pesticides and herbicides but was exposed to chemicals such as THF and methylene chloride at work
Have you made dietary changes to avoid any other neutrotoxins: Eat as much organic as I can afford
Have you tried any thyroid specific treatments: Levothyroxine 50mcg
Your theories or comments: I think fibro is caused by an accumulation of organophosphates inour bodies. They store in fat, women have more fat, women have a higher incidence of fibro
Are we missing any important questions: Was it man made?

06/14/2013
First Name: marcela
Age: 63
Male or Female: female
City: kitchener
State/Province: ontario
Country: canada
How long have you lived there: 24 years
Where were you born: chile
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: food industry
What is Your Line of Work: chef
How has Fibro affected your ability to work: yes
How has Fibro affected your life: yes

History: colesterol
Did You Ever Have A Long Lasting Virus: no
What were your first symptoms: lack of sleep painpain in mi neck and back
What are your current symptoms: pain
Your age at onset of symptoms: 3
How fast was your rate of decline: next day
What are your current symptoms: pain
Number of years since you developed symptoms of fibromyalgia: 4
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 3
Describe the extent of your brain fog: one o two a day
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: pain medicin,etc
What remedies or medications have you tried: one for depression
What makes you feel better: the last one lyrica
What makes you feel worse: medicin for pain
Have you tried avoiding fluoride in your diet: yes y use dentific no fluoride
If so, which sources of fluoride: tap water
Have you made dietary changes to avoid any other neutrotoxins: no
Have you tried any thyroid specific treatments: no they cheque my thyroid
Your theories or comments: the water in mi city has flouride and a drink botles of water every day
Are we missing any important questions:

06/11/2013
First Name: Colleen
Age: 45
Male or Female: f
City:
State/Province: SC
Country: USA
How long have you lived there: 21 years, but gone 24 in midst of it
Where were you born: AL
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: mostly
What is Your Line of Work: photographer
How has Fibro affected your ability to work: Have to pace myself, especially regarding repetitive actions.
How has Fibro affected your life: Drastically- used to be VERY active, now have to be careful not to "Over do"

History: relatively healthy, active woman. Have had asthma, but otherwise good.
Did You Ever Have A Long Lasting Virus: no
What were your first symptoms: ongoing pain in muscles an joints.
What are your current symptoms: Ongoing pain in muscles, joints. brain fog, poor sleep, dizzyness
Your age at onset of symptoms: 35
How fast was your rate of decline: Symptoms hit hard and fast, very suddenly.
What are your current symptoms: Ongoing pain in muscles, joints. brain fog, poor sleep, dizzyness
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: It seems to vary. On "good days" I think quite clearly and remember details in both recent and more long term past. On "not so good days" I'm glad my name is on my driver's license. I think it's closely related to my quality of sleep. I'm now a MUCH lighter sleeper, pain when I move in my sleep as well as very quiet sounds disturb my sleep. I think my brain fog is much worse when I haven't been sleeping well.
Estimate number of doctors you have seen for Fibro related symptoms: maybe 4
Do your doctors tend to focus on all your Fibro symptoms: just the ones I bring up.
Do your doctors treat your symptoms individually or collectively: always individually!
Describe your experience with doctors: My docs have been kind, but they all want to give me a pill for each symptom. An anti-inflammitory, a pill to help sleep etc.
What remedies or medications have you tried: I have been very resistant to most of what the docs have prescribed, but I have tried Mobic, Elevil, something for sleep, I can't recall the name of... Boswellia, tumeric, ginger
What makes you feel better: Mobic helped a TON. I took it for 5 years and doc was concerned with stomach ulcers. I don't recall the antidepressant he put me on after, but it was awful! Boswellia has been a FANTASTIC substitute!! Tumeric has also been helpful.
What makes you feel worse:
Have you tried avoiding fluoride in your diet: yes
If so, which sources of fluoride: I haven't taken prescription drugs for close to 5 years, I live in the country on well water, we don't use much more than diatomacous Earth as a pesticide, so I think I'm pretty flouride free!
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 CFS and Fibro are very closely related if not the same ailment- manifested differently in different people. I have also wondered if the Epstein Barr virus is at the root of them both. Epstein-Barr causes Mono, which has very similar symptoms. Usually contracted by younger folks who are "cured" after 6 weeks of bed rest. I think us not-so-younger folks just can't beat it off sufficiently and so it lingers for years.
Are we missing any important questions:

06/09/2013
First Name: Dana
Age: 35
Male or Female: female
City: LaPorte
State/Province: IN
Country: Laporte
How long have you lived there: 6 years
Where were you born: Laporte
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: Work in production making Candy
How has Fibro affected your ability to work: It makes it harder some days
How has Fibro affected your life: Not as active as I used to be

History:
Did You Ever Have A Long Lasting Virus:
What were your first symptoms: pain and not sleeping
What are your current symptoms: pain and not sleeping wll
Your age at onset of symptoms: 29
How fast was your rate of decline: slow and steady
What are your current symptoms: pain and not sleeping wll
Number of years since you developed symptoms of fibromyalgia: 6-7
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 4
Describe the extent of your brain fog: loose my train of thought during a conversation. Walk in a room and forget what I was going in there for.
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: just the pain and sleeping they always want to put me on antidepressants so I stopped going to the dr. and just deal with it
Describe your experience with doctors: the just give me antidepressants. Had one tell me I had everything under the sun BUT fibro.
What remedies or medications have you tried: antidepressants and muscle relaxers
What makes you feel better: the muscle relaxers did for awhile but my body got used to them
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: no
Have you tried any thyroid specific treatments: no
Your theories or comments:
Are we missing any important questions:

06/07/2013
First Name: Gayle
Age: 51
Male or Female: Female
City: Bribie Island
State/Province: Qld
Country: Australia
How long have you lived there: 2.5 years
Where were you born: Ipswich Qld
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: 30 years at a computer desk
How has Fibro affected your ability to work: Unable to sit for long periods behind a computer, so tired all the time, pain all the time
How has Fibro affected your life: Can't find things, cant remember things, turning up for appointments on wrong days, not being able to think of words when speaking to someone and looking upwards to find the answer,

History: Had viral meningitis in March 2005 at the same time as a "tumour" being discovered on pituitary gland. Had pituitary gland removed in August 2005 and ended up being diagnosed as lymphocytic hypophysitis. Always tired from then on. Had gallbladder removed as a result of having pancreatitis due to gallstones. Always seemed to be sick and had IBS. Diagnosed with fibromyalgia 2012.
Did You Ever Have A Long Lasting Virus: No
What were your first symptoms: Tiredness Pain all over body Numbness in hands
What are your current symptoms:
Your age at onset of symptoms: 43
How fast was your rate of decline:
What are your current symptoms:
Number of years since you developed symptoms of fibromyalgia:
Do your symptoms include brain fog:
Number of years since you developed the brain fog:
Describe the extent of your brain fog:
Estimate number of doctors you have seen for Fibro related symptoms:
Do your doctors tend to focus on all your Fibro symptoms:
Do your doctors treat your symptoms individually or collectively:
Describe your experience with doctors:
What remedies or medications have you tried:
What makes you feel better:
What makes you feel worse:
Have you tried avoiding fluoride in your diet:
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins:
Have you tried any thyroid specific treatments:
Your theories or comments:
Are we missing any important questions:

06/02/2013
First Name: Deborah
Age: 58
Male or Female: female
City: Homosassa
State/Province: Fl
Country: USA
How long have you lived there: 10 years
Where were you born: Indianapolis
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: I am extremely tired in the afternoon. I have a very low energy level.
How has Fibro affected your life: I ache all of the time. It hurts to be touched.

History: obesity, depression, borderline diabetic, type 11
Did You Ever Have A Long Lasting Virus: no
What were your first symptoms: Tiredness
What are your current symptoms: same as above on same question
Your age at onset of symptoms: about 12 years ago
How fast was your rate of decline: moderate
What are your current symptoms: same as above on same question
Number of years since you developed symptoms of fibromyalgia: 12 or so
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 5
Describe the extent of your brain fog: It is occasional, maybe once a week.
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: Told to lose weight, exercise, and I have been given different prescriptions
What remedies or medications have you tried: Advil, tramadol, Cymbalta, Lyrica, flexural, Zoloft, ambien
What makes you feel better: narcotic pain pills, hydrocodiene, etc.
What makes you feel worse: lack of sleep
Have you tried avoiding fluoride in your diet: yes
If so, which sources of fluoride: tap water, toothpaste
Have you made dietary changes to avoid any other neurotoxins: no
Have you tried any thyroid specific treatments: Dr. said not needed
Your theories or comments: I only take the narcotics when I feel I can't stand the pain- when I need a break. One pill a week, or so.
Are we missing any important questions:

06/01/2013
First Name: darlene
Age: 49
Male or Female: female
City: greensboro
State/Province: nc
Country: us`
How long have you lived there: 49`
Where were you born: asheboro,nc
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: management
How has Fibro affected your ability to work: I move very slow
How has Fibro affected your life: complicated everything, unable to really do housework or yard work without paying for it for 2 days after

History: high blood pressure, hypothyroid,IBS,reflux, anemic,low b12
Did You Ever Have A Long Lasting Virus: I don't know
What were your first symptoms: not sure I have had so many for years and have been treated for other things
What are your current symptoms: overall pain and fatigue, shooting pain, tingling in my feet
Your age at onset of symptoms: aprox.20's
How fast was your rate of decline: moderate
What are your current symptoms: overall pain and fatigue, shooting pain, tingling in my feet
Number of years since you developed symptoms of fibromyalgia: 6 months
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: i dont know
Describe the extent of your brain fog: forgetful, difficult to recalling what I want to say
Estimate number of doctors you have seen for Fibro related symptoms: 4-5
Do your doctors tend to focus on all your Fibro symptoms: just the ones that apply to their area
Do your doctors treat your symptoms individually or collectively: yes
Describe your experience with doctors: I have just been treated for each symptom, even surgery for carpel tunnel
What remedies or medications have you tried: Cymbalta, Naprozon
What makes you feel better: rest
What makes you feel worse: a lot of activity
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: no
Have you tried any thyroid specific treatments: no
Your theories or comments:
Are we missing any important questions:

Archived Case Studies...
March 13 - April 12, 2008
February 21 - March 11, 2008
February 2 - February 20, 2008
January 13 - January 31, 2008
December 14 - January 11, 2008
November 20 - December 13, 2007
November 4 - November 19, 2007
October 21 - November 1, 2007
October 6 - October 20, 2007
September 10 - October 5, 2007
August 26 - September 9, 2007
July 26 - August 25, 2007
July 10 - July 25, 2007
May 21 - July 8, 2007
April 25 - May 21, 2007
April 1 - April 24, 2007
March 19 - March 31, 2007
March 5 - March 19, 2007
February 13 - March 1, 2007
January, 2007 - February 12, 2007
August, 2006 - January, 2007
August 22, 2006
June - August 6, 2006
April - May, 2006
February - March, 2006
November, 2005
September - November 2005

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Fibromyalgia Questionnaire & Results