Fibromyalgia Questionnaire & Results

Latest Update: 02/10/2012

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30 QUESTIONNAIRE COMPLETED DATA FORMS FOR April 2009

04/29/2009
First Name: cheryl
Age: 25
Male or Female: female
City: southampton
State/Province: hampshire
Country: england
How long have you lived there: all my life.
Where were you born: southampton, 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:
How has Fibro affected your ability to work:
How has Fibro affected your life:
What were your first symptoms: i stated with a lot of back pain, lower back pain was put down to syaticar, but then the pain went on to go into my hips etc
Your age at onset of symptoms: 17 yrs
How fast was your rate of decline: fast, at first it was mild, then my hips started to hurt, then my shoulders and tops of my arms. now i am suffering pains along my back by my bra strap, groin, wrists, and ankles.
What are your current symptoms: as above, i find the tops of my arms and shoulders, lower back and neck the worst of all. i am also constantly tired!!!
Number of years since you developed symptoms of fibromyalgia: 8 yrs
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: around 4 yrs
Describe the extent of your brain fog: i often cant think straight, my concentration seems to be non-existent some times. i suffer to hold a conversation often, its like a haiz in my head...
Estimate number of doctors you have seen for Fibro related symptoms: too many, ide say around 8 to 10
Do your doctors tend to focus on all your Fibro symptoms: now i can answer this question as a yes, i have only just found out i have this, i hadn't even heard of it before. my last doctor kept focusing in on my depression and lower back pain. my new doctor actually believed me, he asked me to draw a picture of a body and dot where i suffer the pain. he also sent off for xray and blood tests, all came back negitive there for leaving the only diagnosis being fibromyalgia.
Do your doctors treat your symptoms individually or collectively: collectively.
Describe your experience with doctors: back and forth for many yrs. i felt that i have never been believed. one doctor told me i was too young to suffer pain as i described and in not so many words called me an attention seeker.
What remedies or medications have you tried: i have been taking 8/500 of co-codamol 75mg diclofenic and up to now, of which stopped working. i have now been given a whole new perscription, 30/500mg co-codamol, tramadol and amatriptaline. these seem to work great. i do still suffer pain, but pain that is bearable.
What makes you feel better: i am constantly tiered so a sleep feels good, all though it doesn't stop tiredness it seems to help with the brain fog.
What makes you feel worse: a long walk, over tiredness, cold, weather, noises, mood changes.
Have you tried avoiding fluoride in your diet: yes
If so, which sources of fluoride: floride has now been placed in our water, i am unsure this is a good thing, i believe this to be worse for fibromyalgia sufferers. i also use tooth paste with floride, this is obviously not swallowed so i have no worrys with this.
Have you made dietary changes to avoid any other neutrotoxins: no
Have you tried any thyroid specific treatments: no, but i believe my doctors is looking into this option.
Your theories or comments: i dont understand why i have this condition, it upsets me i suffer this crippling desses, i cant even hold my baby on occations and feel so stiff and in so much pain in the mornings, i cant move untill my tramadol kicks in. walking up stairs is the HARDEST task i can do, i avoid stairs at all cost! lifting my arms also causes awful pain.
Are we missing any important questions:

04/28/2009
First Name: Teresa
Age: 42
Male or Female: Female
City: Wichita
State/Province: KS
Country: USA
How long have you lived there: 25 years
Where were you born: Wichita
Is this the first time you have taken our questionnaire: Yes
If not, why are you returning: N/A
Are you still working: Yes
What is Your Line of Work: Substance Abuse Counselor
How has Fibro affected your ability to work: I'm unable to work full-time; my concentration is bad; my pain level is too high at times to complete my paperwork and it is difficult to maintain a job.
How has Fibro affected your life: It keeps me from enjoying life in lots of ways-not enough energy to have fun with my grandchildren; chronic pain, headaches, fatigue. Sometimes I have difficulty taking a bath, washing my hair-even brushing my teeth is pinful at times due to the stiffness in my arms and shoulders.
What were your first symptoms: Depression, fatigue, muscle spasms.
Your age at onset of symptoms: 25
How fast was your rate of decline: It took awhile for me to begin to decline, at age 36 it began and it has been at a fast rate ever since.
What are your current symptoms: Severe muscle and joint pain, chronic fatigue, depression, forgetfulness, lack of ability to get restful sleep, irritable bowels,irritability and severe stiffness-to name a few!!
Number of years since you developed symptoms of fibromyalgia: 18
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: The last four have been the worst
Describe the extent of your brain fog: forgetfulness, absentmindedness and sometimes difficulty holding a conversation. I also havebeen known recently to be very easily distracted and space out during conversations, like I hear the person talking for a minute but cannot distinguish their words.
Estimate number of doctors you have seen for Fibro related symptoms: 6
Do your doctors tend to focus on all your Fibro symptoms: no-most want to put me on muscle relaxers and pain meds along with antidepressants
Do your doctors treat your symptoms individually or collectively: mostly indivdually
Describe your experience with doctors: frustrating. either they want to overmedicate me or i am accused of drug seeking and they won't give me anything
What remedies or medications have you tried: Opiates, soma, flexeril, cymbalta, neurontin and lyrica
What makes you feel better: restful sleep, stretching
What makes you feel worse: diet sodas, too much sugar and caffiene and pushing myself too hard physically
Have you tried avoiding fluoride in your diet: yes
If so, which sources of fluoride: i drink only bottled water
Have you made dietary changes to avoid any other neutrotoxins: yes-i stopped drinking diet sodas (due to the asparatame) and eating foods with msg
Have you tried any thyroid specific treatments: no
Your theories or comments: none
Are we missing any important questions: n

04/23/2009
First Name: SUSAN
Age: 52
Male or Female: FEMALE
City: GALESBURG
State/Province: IL
Country: USA
How long have you lived there: ALWAYS
Where were you born: GALESBURG, IL
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: DINING SERVICES-(LINE WORKER) KNOX COLLEGE
How has Fibro affected your ability to work: SO FAR IV'E BEEN ABLE TO WORK AND JUST DELT WITH THE PAIN
How has Fibro affected your life: HAS AFFECTED ALL AREAS OF MY LIFE, SOCIAL, RIDING MY MOTORCYCLE, AND GARDENING. BAD DAYS KEEP ME HOME AND IN BED.
What were your first symptoms: LEGS WERE IN MUCH PAIN. NO EXPLANATION. THOUSANDS OF $ ON CHIROPRACTIC CARE THE LAST 3 YEARS.
Your age at onset of symptoms: 49
How fast was your rate of decline: SLOW THE FIRST 3 YEARS, THE LAST 9 MONTHS VERY FAST.
What are your current symptoms: ACHE IN SHOULDERS, NECK, SWOLLEN MUSCLES ON BACK OF SCULL, ACHE LEGS AND LITTLE SLEEP.
Number of years since you developed symptoms of fibromyalgia: 3
Do your symptoms include brain fog: NO
Number of years since you developed the brain fog: 9 MO.
Describe the extent of your brain fog: CAN'T CONCENTRATE, FORGET WHAT I'M DOING AT WORK, DON'T RETAIN INFO
Estimate number of doctors you have seen for Fibro related symptoms: 10
Do your doctors tend to focus on all your Fibro symptoms: ONLY THE CHIROPRACTOR THAT IS TOO EXPENSIVE TO CONTINUE WITH.
Do your doctors treat your symptoms individually or collectively: CHIROPRACTOR TREATED COLLECTIVELY.
Describe your experience with doctors: I AM ON THE VERGE OF GIVING UP. I HAVE SPENT SO MUCH MONEY ON TESTS THAT IT IS MAKING TO BIG AN IMPACT ON MY ABILITY TO FUNCTION AS A SINGLE PERSON
What remedies or medications have you tried: SUPPLEMENT, ADRENAL,DEEP BREATHING, AND MILD EXCERCISE.
What makes you feel better: BREATHING AND SLEEP
What makes you feel worse: TOO MUCH ACTIVITY ON A GOOD DAY.
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: TRYING TO EAT MORE RAW FOOD.
Have you tried any thyroid specific treatments: I AM HYPOTHYROID AND TAKE MEDICATION.
Your theories or comments: I HAVE SEEN 1 TOO MANY DR. THAT DON'T BELIEVE THAT FM IS REAL. I HAVE HAD A LOT OF NECK PAIN FOR 18 YRS. THAT IS WHAT THEY WANT TO TREAT. I'M NOW LOST.
Are we missing any important questions: NO

04/22/2009
First Name: Carolyn
Age: 62
Male or Female: female
City: Cortez
State/Province: Colorado
Country: USA
How long have you lived there: 16 years
Where were you born: Pennsylvania
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: manager, merchandiser
How has Fibro affected your ability to work: Full body muscle pain, sleep disturbance, could not function most of the time, bedridden at times. could not schedule anything for years.
How has Fibro affected your life: Has caused numerous difficulties. I am sure I suffered from a form of grief for years, trying to find relief, Tried many, many forms of treatment both alopathic and alternative. I was injured 9/4/94, had microdescectomy L5-S1, didn't improve for years. I am still on Rx for pain and sleep.
What were your first symptoms: Muscle pain, thought at first it was just so much in my back, but realized it really was all over.
Your age at onset of symptoms: 48 yrs.
How fast was your rate of decline: Rapid, unrelenting, unbearable, life altering, I still have pain,but I more controlled, less severe. Sleep disturbance and now anxiety and asthma.
What are your current symptoms: Pain, worse when lying down, especally during the night. Restlessness, sleep disturbance.
Number of years since you developed symptoms of fibromyalgia: 15 years!
Do your symptoms include brain fog: not usually
Number of years since you developed the brain fog:
Describe the extent of your brain fog: I couldn't say I never had brain fog, but I now just have a poor memory, possibly due to sleep problems.
Estimate number of doctors you have seen for Fibro related symptoms: 6
Do your doctors tend to focus on all your Fibro symptoms: No, my current doctor is very helpful. He is open to my opinions and will accept that I will try most anything (reasonable) to get better.
Do your doctors treat your symptoms individually or collectively: collectively
Describe your experience with doctors: I have been lucky, the treating physician for my work injury did send me to orthropedic surgeon, when I didn't get well, he did the tender points and diagnosed fibromyalgia acout 1996.
What remedies or medications have you tried: Lots including Rx for RA, nothing helped consistently. For a while injections of Decadron helped. Predisone helped but I became way to agressive and I asked to discontinue.
What makes you feel better: Heat, although I think it is just a comfort. Oxycodone 15 mg 1-3 X day depending on severity of pain, which causes immobility.
What makes you feel worse: Cold! If I get cold I rapidly decline.
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 don't use many chemical ingredients if possible.
Have you tried any thyroid specific treatments: No, but I will be having a thyroid scan. I am cold often.
Your theories or comments: I think there are many reasons people, mostly women, get fibromyalgia, Unresolved issues, stress, and sadness or loss could be predisposing. When a trigger puts one over the edge. It is probably a combination of many things causing an oveload in body and mind whether couscious or not.
Are we missing any important questions:

04/21/2009
First Name: PATRICIA
Age: 65
Male or Female: F
City: WOODLAND
State/Province: CA
Country: USA
How long have you lived there: 15 YRS.
Where were you born: BOSTON
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: ALCOHOL/DRUG MENTAL HEALTH SPEC.
How has Fibro affected your ability to work: SLOWED DOWN AND HARD TO GET UP IN THE A.M.
How has Fibro affected your life: TOTALY I HAVE NO LIFE TO SPEAK OF
What were your first symptoms: EXTREME PAIN DURING MENSTRATION
Your age at onset of symptoms: PUBERTY
How fast was your rate of decline: SLOW BUT STEADY.
What are your current symptoms: DEPRESSION, ANXIETY, SLEEP DEP., EXTREME PAIN ALL OVER MY BODY EVEN MY SKIN HURTS. DAILY HEADACHES, ETC., ETC.,
Number of years since you developed symptoms of fibromyalgia: I AM 65 NOW AND SINCE PUBERTY.
Do your symptoms include brain fog: YES
Number of years since you developed the brain fog: PUBERTY
Describe the extent of your brain fog: DULL TO NOT IN THE PRESENT.
Estimate number of doctors you have seen for Fibro related symptoms: 5
Do your doctors tend to focus on all your Fibro symptoms: NOT SINCE I HAVE BEEN DIAGNOSED WHICH HAS BEEN IN THE LAST 5-6 YRS.
Do your doctors treat your symptoms individually or collectively: ONE DOCTOR NOW TREATING ME.
Describe your experience with doctors: I WAS TOLD LIKE EVERY ONE ELSE THE PAIN, DEPRESSION, ANXIETY, IS ALL IN MY HEAD.
What remedies or medications have you tried: ALCOHOL AND DRUGS IN THE PAST. NOW I AM TAKING ANTI DEPRESSENT, ESTROGEN, VICODIN.
What makes you feel better: SLEEP
What makes you feel worse: OVER WORK AND OVER STRRESS.
Have you tried avoiding fluoride in your diet: NO
If so, which sources of fluoride: NONE.
Have you made dietary changes to avoid any other neutrotoxins: NO
Have you tried any thyroid specific treatments: NO
Your theories or comments: NOT SURE WHAT YOU WANT TO HEAR.
Are we missing any important questions: NOT SURE.

04/19/2009
First Name: Susane G
Age: 52
Male or Female: F
City: Sault Ste. Marie
State/Province: ON
Country: Canada
How long have you lived there: 20 years
Where were you born: no
Is this the first time you have taken our questionnaire: y
If not, why are you returning:
Are you still working: no, trying one hour day
What is Your Line of Work: lunch assistant
How has Fibro affected your ability to work: yes
How has Fibro affected your life: emotionaly, finacanialy, relationships, friends
What were your first symptoms: elictircal spasms in arms, cramped hands
Your age at onset of symptoms: 30
How fast was your rate of decline: 20 years from working, University with Fibro diangnosis, worked 2 years. Disabled
What are your current symptoms: chronic pain-spasms-charlie horses-electrical or deep ginding pain, All body, upper body worse in debilating. shouler blades-under arm sides-breast bone-neck-skull-face-sinus-allergies. Severe cold intolerance feet-hands-body. change in temperature from one room to the next, airconditioning very spasmatic
Number of years since you developed symptoms of fibromyalgia: 22 years
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 10
Describe the extent of your brain fog: difficult to concentrate, multi-tasking. Write numbers down wrong. hard to get words out. Can't remember things, confusion when really flaring up
Estimate number of doctors you have seen for Fibro related symptoms: 3
Do your doctors tend to focus on all your Fibro symptoms: yes Rhuemetologist, one a year. she is not returning she is vey ill
Do your doctors treat your symptoms individually or collectively: individually
Describe your experience with doctors: don't want to deal with it. don't care
What remedies or medications have you tried: amitriptaline, oxycotine, tylenol 3, zoloft, alprax, clonozapam, Cyclobzprine gel,
What makes you feel better: massage, warm weather, lighter clothing & shoes, pace very carefully. Do little at a time ex. carrying, holding, moving around
What makes you feel worse: cold temperatures. Overexertion & doesn't take much. Good for about 2 hrs and must rest lye head and body back
Have you tried avoiding fluoride in your diet: no??
If so, which sources of fluoride: flouride in tap water. Drink lots of it
Have you made dietary changes to avoid any other neutrotoxins: try less carbs
Have you tried any thyroid specific treatments: no
Your theories or comments: No body understands or cares
Are we missing any important questions:

04/18/2009
First Name: Caroline
Age: 42
Male or Female: Female
City: Kalgoorlie
State/Province: Western Australia
Country: Australia
How long have you lived there: 42 years
Where were you born: Australia
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: Business management and entertainment
How has Fibro affected your ability to work: Yes, the pain from it causes restless nights, because I can not do a lot of exercise it restrict me from be able to consistently do my work
How has Fibro affected your life: Yes, dramatically
What were your first symptoms: muscular aches and pain in my legs and lower body. Particularly in my hip and pelvic region and upper thighs
Your age at onset of symptoms: 40
How fast was your rate of decline: Almost over night
What are your current symptoms: Pain throughout my back, neck, shoulders, legs and abdomin. Disturbed sleep, lethargy, migraines and depression
Number of years since you developed symptoms of fibromyalgia: 3
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: recent
Describe the extent of your brain fog: I find it very hard to keep concentration for very long, I am continually thinking I have done something only to discover I haven't and also I am developing forgetfulness something I did not suffer from previously
Estimate number of doctors you have seen for Fibro related symptoms: 2 and numerous specialist (I live in a very rural area)
Do your doctors tend to focus on all your Fibro symptoms: No, I am having difficulty in actually getting them to definately diagnose my condition
Do your doctors treat your symptoms individually or collectively: My doctor is now getting to the point we he can not find a way to help me.
Describe your experience with doctors: I have found my experience with doctors and specialist very frustrating and these have only added to my stress levels
What remedies or medications have you tried: Mostly anti-inflamatories, a bit of remedial physiotherapy and a lot of pychological treatment
What makes you feel better: I find hot packs relieve a lot of the pain in the muscular areas and light relaxing exercise like slow walks have help with mental stimulation but the result causes a lot of physical pain
What makes you feel worse: Lack of sleep, lack of pain relief and the isolation from friends and family this condition causes
Have you tried avoiding fluoride in your diet: No
If so, which sources of fluoride: I only drink filtered water
Have you made dietary changes to avoid any other neutrotoxins: No, I am currently trying to reconstruct my diet as weight has become a issue and as exercise cause extreme pain, I am trying to control weight gain through diet changes
Have you tried any thyroid specific treatments: No
Your theories or comments: I believe relieving the mental anxieties from this illness helps with the degree of depression one suffers. I also found that acceptance of such a condition can also help relieve some of the symptons as it is very hard to describe or help people understand your situation when this illness is not recognise and knowledge of it is not know by the general population
Are we missing any important questions:

04/17/2009
First Name: Tara
Age: 34
Male or Female: Female
City: Horn Lake
State/Province: MS
Country: USA
How long have you lived there: 1 1/2 yrs
Where were you born: Tacoma
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: yes
What is Your Line of Work: Administrative
How has Fibro affected your ability to work: I fatigue mare easily
How has Fibro affected your life: Same
What were your first symptoms: Pain
Your age at onset of symptoms: 25
How fast was your rate of decline: Literally overnight
What are your current symptoms: Pain, Fatigue, weakness, nausea
Number of years since you developed symptoms of fibromyalgia: almost 10
Do your symptoms include brain fog: occasionally
Number of years since you developed the brain fog: 9
Describe the extent of your brain fog:
Estimate number of doctors you have seen for Fibro related symptoms: 5
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: Great
What remedies or medications have you tried: Meds, massage, yoga, suppliments
What makes you feel better: all
What makes you feel worse: strss, weather changes
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:

04/17/2009
First Name: Kimberly
Age: 41
Male or Female: female
City: Holland
State/Province: Michigan
Country: usa
How long have you lived there: 41 years
Where were you born: Holland Michiagn
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: quality auditor/support manufacturing
How has Fibro affected your ability to work: I have learned to work with pain daily.
How has Fibro affected your life: It has slowed me down. Often no motivation to do anything unless I have to.
What were your first symptoms: chest pain
Your age at onset of symptoms: 32
How fast was your rate of decline: slow, until recently seems to be progressing
What are your current symptoms: wide spread pain, headaches, fatigue, sinus problems, irritable
Number of years since you developed symptoms of fibromyalgia: 9
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 3
Describe the extent of your brain fog: can't concentrate, have to ask repeat question
Estimate number of doctors you have seen for Fibro related symptoms: 2
Do your doctors tend to focus on all your Fibro symptoms: My chiropractor is most focused on my condition
Do your doctors treat your symptoms individually or collectively: individually
Describe your experience with doctors: I personally do not think any medication works nor do I like to use any. It seems Doctors only want to hide the problems.
What remedies or medications have you tried: anti inflammatory
What makes you feel better: heat... electric blanket, hot bath ect. ibuprofen
What makes you feel worse: cold damp weather
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride: tap water
Have you made dietary changes to avoid any other neutrotoxins: no
Have you tried any thyroid specific treatments: no
Your theories or comments:
Are we missing any important questions:

04/15/2009
First Name: KRISTINA
Age: 35
Male or Female: FEMALE
City: SAUGERTIES
State/Province: NY
Country: USA
How long have you lived there: 4 YEARS
Where were you born: KINGSTON , NY
Is this the first time you have taken our questionnaire: YES
If not, why are you returning:
Are you still working: I AM A STAY AT HOME MOM FOR 3 YEARS
What is Your Line of Work: SECRETARY
How has Fibro affected your ability to work: FOR THE LAST YEAR I DIDN'T KNOW I HAD IT AND HAVE HAD A DIFFICULT TIME TAKING CARE OF MY SONA ND MY HOME. IT'S BEEN GETTING WORSE
How has Fibro affected your life: I HAVE A 3 YEAR OLD. AND IN THE WINTER I HAVE A HARD TIME GETTING OUT OF BED DUE TO CHRONIC FATIGUE AND SEVERE BACK PAIN. I SPEND MY DAY LAYING IN BED ONA HEATING PAD. OTHER WISE I AM IN PAIN . I HAVE HAD SLEEPING ISSUES FOR 2 YEARS. I HAVE SPENT THE LAST YEAR HAVEING STEROID SHOTS, FACET JOINT BLOCK, AND EPIDURAL. I JUST RECENTLT FOUND OUT IT WAS FIBRO. I CAN'T STAND OR SIT FOR MORE THEN 30 MIN. AFTER DOING HOUSE WORK I AM STUCK IN BED FOR 2 DAYS IN PAIN
What were your first symptoms: SLEEP PROBLEMS , AND BACK PAIN. ALTHOUGH I HAD STOMACH ISSUES FOR YEARS BEFORE
Your age at onset of symptoms: 32 AS FAR AS I KNOW
How fast was your rate of decline: 2 YEARS AGO IT STARTED I JUST HAD A EPIDURAL IN DEC IT;S NOW APRIL AND FEB IT SEEMED TO GET WORSE EVERY WEEK UP TILL ABOUT 2 WEEKS AGO. I DON;T KNOW IF ITS THE WEATHER GETTING WARMER OR?
What are your current symptoms: CHRONIC BACK PAIN AND STIFFNESS, SLEEP ISSUES, FATIGUE, STOMACH ISSUES, SKIN PROBLEMS, BRAIN FOG, ENDOMITRIOSIS, FERTILITY ISSUES IRRITABILITY, OCD, ANXIETY
Number of years since you developed symptoms of fibromyalgia: SYMPTOMS STARTED 2 YEARS AGO WITH PAIN,
Do your symptoms include brain fog: YES
Number of years since you developed the brain fog: 3
Describe the extent of your brain fog: CAN'T THINK, I LOOSE CONCENTRATION EASILY, CAN'T FINISH SENTECES SOMETIME CAN'T THINK OF WORDS
Estimate number of doctors you have seen for Fibro related symptoms: 5
Do your doctors tend to focus on all your Fibro symptoms: HAVEN'T SEEN A RUMOTOLOGIST YET, HAVE APT IN 2 WEEKS. MY SHRINK AND MY OBGYN ARE THE ONLY ONES WHO SEEM TO HAVE CONNECTED EVERYTHING WITH ALL MY SYMPTOMS MY BACK SURGEON WAS NO HELP. MY PAIN MANAGMENT DR WAS THE FIRST TO EVEN MENTION IT. I HAD NO IDEA WHAT IT WAS. THEN MY STEP MOTHER MENTIONED IT AND MY AUNT HAS IT. SO I INVESTIGATED AND FOUND THAT WAS DESCIBING ALL MY SYMPTOMS AND IT ALL STARTED WHEN I HAD MY SON AND GOT NO SLEEP AT NIGHT AFTER A YEAR I STARTED HAVEING PAIN
Do your doctors treat your symptoms individually or collectively: HAVEN'T GOTTEN TREATMENT YET. HAVE TO WAIT 2 WEEKS TO SEE THE DR
Describe your experience with doctors:
What remedies or medications have you tried: I HAVE 5-HTP AND MSM BUT I TRIED THEM ONCE AND I THOUGHT I WAS GONNA GET SICK ON A FULL STOMACH. HAVEN'T HAD TO GUTS TO TRY AGAIN
What makes you feel better: HEATING PAD, LAYING DOWN, AND TIGER BALM
What makes you feel worse: SITTING, STANDING, WALKING, BENDING AND LIFTING. MY DAILY LIFE IS GETTING MORE DIFFICULT
Have you tried avoiding fluoride in your diet: NO NEVER HEARD OF IT
If so, which sources of fluoride: TOOTHPASTE I HAVE A WELL SO MY WATER IS NOT FLORIDATED
Have you made dietary changes to avoid any other neutrotoxins: DON'T KNOW HOW TO OR WHAT I CAN DO
Have you tried any thyroid specific treatments: NO THYROID ISSUES.
Your theories or comments:
Are we missing any important questions:

04/15/2009
First Name: Cherry
Age: 57
Male or Female: F
City: Tweed Heads
State/Province: New South Wales
Country: Australia
How long have you lived there: 57 years
Where were you born: Australia
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: pain, fatigue, inability to focus at work,
Your age at onset of symptoms: 45
How fast was your rate of decline: very fast
What are your current symptoms: fatigue, arthritis, lack of concentration, depression, overweight, pain, grinding teeth
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: 10
Describe the extent of your brain fog: simple tasks become complicated, unable to read books, talk on the phone,drive a car
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: The 5th doctor was the only one who referred me to a specialist who diagnosed FM
What remedies or medications have you tried: chinese herbs, natural herbal tablets/powders,prescription medication,physiotherapy,psychologist,aqua yoga, masseuse,dieting
What makes you feel better: cool dry days, a full nights sleep
What makes you feel worse: weather, heat, humidity, cold, 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 neutrotoxins: yes
Have you tried any thyroid specific treatments: no
Your theories or comments: I have been diagnosed with post traumatic stress order due to emotional abuse by my mother, stress is a major key factor in my illness
Are we missing any important questions: Have you ever been in remission and then unexpectedly the symptoms returned? In my case Yes.

04/14/2009
First Name: nicole
Age: 32
Male or Female: female
City: austin
State/Province: tx
Country: us
How long have you lived there: whole life
Where were you born: tx
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: shipping
How has Fibro affected your ability to work: i had to quit for about a year and now i work two days a week
How has Fibro affected your life: made it worse
What were your first symptoms: pain all over mainly left side of body would go numb and pain was unbearable
Your age at onset of symptoms: 24? just diag.
How fast was your rate of decline: very fast
What are your current symptoms: pain, delayed soreness, headaches,woke up one morning unable to walk- don't know if that is arthritis or fibro., fatigue,malise, trouble sleeping-not feeling rested after sleep,memory problems,soreness all over body sometimes it even feels like my toe-nails and finer-nails hurt, crackling in ears,jaw pain, brain fog?
Number of years since you developed symptoms of fibromyalgia: have had problems since 2000 was told it was MS till last year then I was told it is fibro.
Do your symptoms include brain fog: YES
Number of years since you developed the brain fog: 1
Describe the extent of your brain fog: not remembering things-couldn't remember if I locked the door twoseconds after I walked threw it- had trouble even text messaging for awhile-they would not make sence, my daughter says sometimes we have the same conversations twice
Estimate number of doctors you have seen for Fibro related symptoms: 3 since diag. but MANY before then
Do your doctors tend to focus on all your Fibro symptoms: NEVER
Do your doctors treat your symptoms individually or collectively: was on Lyrica but then I was taken off-why don't know- I am on nothing for fibro now but Ultram and Humira for arthritis- I think the Humira helps a little with the fibro- my dad is on amitriptyline for his fibro. and he suffers a lot less than me
Describe your experience with doctors: some don't even care when you say you have fibro. I think it is a generic label for many things and given too easily!
What remedies or medications have you tried: Lyrica, Neurotin, Darvocet, Ultram
What makes you feel better: Ultram, Darvocet and Apple Cidar Vinegar-(my pain is almost 50% better on the vinegar and I have been on it a month,) lots of vegatables, no sodas, lots of water
What makes you feel worse: Lyrica, Neurotin
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: more fish-lots less red meat
Have you tried any thyroid specific treatments:
Your theories or comments: I think the toxins in our foods and world are causing a lot of our problems
Are we missing any important questions:

04/12/2009
First Name: jean
Age: 33
Male or Female: femeale
City: phila
State/Province: pa
Country:
How long have you lived there: 7 years
Where were you born: phila
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: home maker
How has Fibro affected your ability to work: yes
How has Fibro affected your life: yes
What were your first symptoms: severe pain all over my body cant sleep very hard to walk burnning pain stabbbing pain it hurts so bad just when someone touch you try so many med so far nothing works exercise is very hard for me to do not engery for any thing just want to be out of pain
Your age at onset of symptoms: 32
How fast was your rate of decline: never got better
What are your current symptoms:
Number of years since you developed symptoms of fibromyalgia: 2007
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: family doctor and rumoliygy
Do your doctors tend to focus on all your Fibro symptoms: yes
Do your doctors treat your symptoms individually or collectively: yes
Describe your experience with doctors: yes
What remedies or medications have you tried: morphine gapatin efexor nortthpline caymblta lyrica therir are other med i took cant rember all of them
What makes you feel better: nothing
What makes you feel worse: weather stress sever pain tiredness house work walking
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: is their any other things that i can tried
Are we missing any important questions:

04/12/2009
First Name: Terry
Age: 50
Male or Female: female
City: sykesville
State/Province: MD
Country: USA
How long have you lived there: 50
Where were you born: MD
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: House Cleaning
How has Fibro affected your ability to work: I can not work a full day. Only 3 days a week tops and 4-5 hours. I get achy, weak, exhausted so I have to rest.
How has Fibro affected your life: It;s horrible, you can not plan how bad you will feel from day to day, pain is always a 5 or worse. Feels like the flu, aches, pains, weakness, chills except the fever is not there, it feels like there's one though.Concentration and Memory too, Your memory can forget things almost instantly.
What were your first symptoms: I would have to say an achy burning weak, feeling in upper arms and legs. Brain Fog, short term memory dysfunction too, my friends were worried and thought I should be tested for Altzheimers before I told them its a sysmptom of CFS/FM.
Your age at onset of symptoms: 40
How fast was your rate of decline: Unsure. It came on as listed in "First Symtoms"
What are your current symptoms: Flu like )achy, weak muscles, joint pain like arthritis, drop dead tired if I'd try to do all my daily chores, just EXHAUSTED, malaise. Brian fog.
Number of years since you developed symptoms of fibromyalgia: 10 years ago I got it the first time. It seemed to get better after about a year. Then It came back last year at age 49. So far 1 year for both instances.
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: unknown 10 or so
Describe the extent of your brain fog: Totally short term memory, and concentration, can not focus.
Estimate number of doctors you have seen for Fibro related symptoms: 4
Do your doctors tend to focus on all your Fibro symptoms: yes pretty well
Do your doctors treat your symptoms individually or collectively: individually
Describe your experience with doctors: I don't feel they really feel how disabilitating this is, but they seem to try too especially for someone that doesn't have it. Although I don't think they would make a special call to me if a cure or some new drug would arise. With this illness, I would go for anything if the doctors believe it would cure it, in an instant.
What remedies or medications have you tried: Zoloft, Trazodone, Ultram, ultram ER, Vitamins, Minerals, Herbs mainly: Magnesium, B12, Bs, Coenzyme Q10, Fish oil, etc. Briefly tried Lyrica, made me really nauseated.
What makes you feel better: I would say Ultam ER 200 mg. once day. Took that edge off very well enough so I could get some work done.
What makes you feel worse: If I try to do all the things I use to do. The more I do, the worse I feel afterwords.
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 if I am aware
Have you tried any thyroid specific treatments: only Levothyroxin
Your theories or comments: The first episode eemed to clear up after I took Magnesium and Licorice Root. (Licoice Root, because I read an article by Jean Carper that it raises a common sympton in CFS/FM patient's and that is Low Blood Pressure. However, It doesn;t seem to work this time around.
Are we missing any important questions: no

04/08/2009
First Name: wanda
Age: 55
Male or Female: female
City: Jacksontown
State/Province: NB
Country: Canada
How long have you lived there: 14yrs
Where were you born: Woodstock NB
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: with goods days and bad days and usually more bad day,I could not be realible for full time work
How has Fibro affected your life: Alot has changed, pain so very tired, things like yard work that I loved can only be done when I can do it not when it neds, I do painting, quilting, crochetting and with still hands that go numb can only do what they allow.Low energy, but because of a terminally ill husband, alot I have to force to do as he is completly not able, so that leaves me suffering to the point of tears anf wanting to screem.
What were your first symptoms: Really cant remember, but was yrs between not feling well and diagnoised
Your age at onset of symptoms: 28-29
How fast was your rate of decline: I became very week, no energy,couldnt figure out why pain when had not done anything, finally wokr one am couldnt was and did not with asistance for 3-4 months
What are your current symptoms: Pain head to toe: headaches, muscles spams in shoulders, tiredness, low energy, hand and feet swelling, hand goind numb and cold,all over ain
Number of years since you developed symptoms of fibromyalgia: I look back now and fiqure it was about 26 yrs ago
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: it been quite awhile
Describe the extent of your brain fog: In a conversatin, take a pause cant remember what I was talking about, remembering upcoming events so that I have to have caleender at all times,forgetting what i have gone to a room for this is very grequent
Estimate number of doctors you have seen for Fibro related symptoms: 9
Do your doctors tend to focus on all your Fibro symptoms: At the time of trying to fing out what was really wrong with me, we lived in a city ,large, who had alot of speialist so i was lucky, since we have moved back to our home town, really nothing has been done
Do your doctors treat your symptoms individually or collectively: We to a Dr usually for something else, fibro is rarely mentined, I dont bother any more either
Describe your experience with doctors: It is just overlooked most of the time at one point i was told it was all in my head, but before I left that office, Dr knew where they stood and what was wrong was not in my head, i had learned alot living in the city and could quote like a professor, hear one little pain in shoulder and Dr say fibromyalgia, I just chuckel and dont bother to day anything anymore
What remedies or medications have you tried: I take rivotril to keep my world upside up also take elival to sleep, that is all, real bad tylenol or other such pain drug
What makes you feel better: Warm, clear sunny days, no humidity
What makes you feel worse: cold wet and damp weather
Have you tried avoiding fluoride in your diet: yes
If so, which sources of fluoride: we have rural well water no floride
Have you made dietary changes to avoid any other neutrotoxins: we eat a healthy diet as my husbands heart disease requires it
Have you tried any thyroid specific treatments: Have had no trouble there yet, have been lucky
Your theories or comments: I do know how much it hurts, but please do not just sit ,lay around, get up and get around or u will never be able to, 14 yrs ago I was told I would be in a wheel chair in less than 5 yrs, I do use a cane if going to be doing alot of walking but other than that I stronly tough it out.
Are we missing any important questions: no

04/07/2009
First Name: Mark
Age: 42
Male or Female: male
City: Fall River
State/Province: MA.
Country: USA
How long have you lived there: 42 years
Where were you born: Fall River, MA.
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: custodian
How has Fibro affected your ability to work: I am out from shoulder surgery at the moment, but feel I will have a hard time at work when I return
How has Fibro affected your life: I can do alot of the outdoor stuff I like
What were your first symptoms: shoulder and leg pains
Your age at onset of symptoms: 42
How fast was your rate of decline: 1 month
What are your current symptoms: legs, shoulders, neck pains
Number of years since you developed symptoms of fibromyalgia: 4 months
Do your symptoms include brain fog: no
Number of years since you developed the brain fog: 0
Describe the extent of your brain fog:
Estimate number of doctors you have seen for Fibro related symptoms: 0
Do your doctors tend to focus on all your Fibro symptoms: n/a
Do your doctors treat your symptoms individually or collectively: I saw my dr. for the muscle pain and he tried to treat that problem
Describe your experience with doctors:
What remedies or medications have you tried: motrin
What makes you feel better: nothing
What makes you feel worse: not sure
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 have been doing my own research and am not certain that I have FM but my mother has been diagnosed with it, I hurt my shoulder 11/28/08 and I havent been the same since. I had the shoulder repaired 3/3/09 but continue to have leg,back,shoulder,and neck pain. Are we missing any important questions:

04/07/2009
First Name: Kathryn
Age: 40
Male or Female: F
City: Fort Drum
State/Province: Florida
Country: USA
How long have you lived there: 3 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: Farming
How has Fibro affected your ability to work: Constant pain & cramping
How has Fibro affected your life: Slowed me
What were your first symptoms: Neck pain
Your age at onset of symptoms: 16
How fast was your rate of decline: The last 4 years have been constant.
What are your current symptoms: Severe neck & back pain, full body cramping, leg twitching/locking up, tired, never "sleep".
Number of years since you developed symptoms of fibromyalgia: 20
Do your symptoms include brain fog: Sometimes
Number of years since you developed the brain fog: 1
Describe the extent of your brain fog: Losing track of time and stuff.
Estimate number of doctors you have seen for Fibro related symptoms: 0
Do your doctors tend to focus on all your Fibro symptoms: I have only consulted with Chiropractors & Naturalpaths
Do your doctors treat your symptoms individually or collectively: Both
Describe your experience with doctors: I haven't seen Doctors for Fibro in 16 years.
What remedies or medications have you tried: Ibuprophin, potassium, b's, royal jelly, blue green algae, antioxident of various types, proboitics, hiking, weight training, Yoga!
What makes you feel better: Exercise, stretching, nutirents, ibuprophin, hot shower/tub.
What makes you feel worse: Non movement, processed food, to much parting, to much lifting.
Have you tried avoiding fluoride in your diet: YES
If so, which sources of fluoride: Any known!
Have you made dietary changes to avoid any other neutrotoxins: Yes
Have you tried any thyroid specific treatments: No
Your theories or comments: I Will WIN!
Are we missing any important questions: That depends on who sees this.

04/07/2009
First Name: zoe
Age: 55
Male or Female: female
City: st. petersburg
State/Province: Florida
Country: United States
How long have you lived there: 5 years
Where were you born: stuttgart,germany
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: bodywork therapist
How has Fibro affected your ability to work: 10 years since menapause
How has Fibro affected your life: 10 years since menapause
What were your first symptoms: joints hurt, can't run anymore.
Your age at onset of symptoms: 45
How fast was your rate of decline: onset overnight
What are your current symptoms: joints hurt,hard time concentrating, skin problems
Number of years since you developed symptoms of fibromyalgia: 10
Do your symptoms include brain fog: not sure
Number of years since you developed the brain fog: not sure
Describe the extent of your brain fog: concentration limited hard to finish projects
Estimate number of doctors you have seen for Fibro related symptoms: none
Do your doctors tend to focus on all your Fibro symptoms: not sure
Do your doctors treat your symptoms individually or collectively: not sure
Describe your experience with doctors: mostly about ageing
What remedies or medications have you tried: joint pain, msm, chrondo, glucosomine, but very expensive
What makes you feel better: same as above
What makes you feel worse: not moving
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride: drink pur filtered water
Have you made dietary changes to avoid any other neutrotoxins: currently taking b-12 injections
Have you tried any thyroid specific treatments: thyroid is fine
Your theories or comments: getting older makes us want to live a more natural life
Are we missing any important questions:

04/06/2009
First Name: DANIELLE
Age: 40
Male or Female: FEMALE
City: PLAINS
State/Province: PA
Country: UNITED STATES
How long have you lived there: 10YRS
Where were you born: WILKES-BARRE,PA
Is this the first time you have taken our questionnaire: YES
If not, why are you returning:
Are you still working: YES
What is Your Line of Work: I'M A PHLEBOTOMIST
How has Fibro affected your ability to work: YES, I'M VERY ACHY AND SORE ALOT, I REALLY PUSH MYSELF TO GET THROUGH THE DAY. AS FAR AS THE FATIGUE IT CAN BE REALLY TERRIBLE I SLEEP ALL NIGHT AND THEN I WAKE AND ITS NOT LIKE I SLEPT AT ALL
How has Fibro affected your life: I'M MOODY BECAUSE I'M ALWAYS UNCOMFORTABLE. I TRY TO DO THINGS JUST SO I CAN STILL HAVE A LIFE AND MOST OF THE TIME I JUST PAY FOR IT THE NEXT DAY. I HAVE A 8YR OLD SO LIFE DOES HAVE TO GO ON.
What were your first symptoms: FATIGUE AND ACHES AFTER I HAD MY DAUGHTER AND I WAS TOLD THAT IT WAS JUST NEW MOMMY STUFF SO I LIVED WITH IT FOR ABOUT 6 YRS.
Your age at onset of symptoms: 32
How fast was your rate of decline: JUST GRADUAL, I TRY TO WALK AND KEEP MYSELF GOING IT SEEMS TO HELP
What are your current symptoms: STIFFNESS IN JOINTS, ACHY ALL OVER,FATIGUE, ANKLES FEEL SWOLLEN BUT DONT LOOK IT, RIGHT LEG ON OUTSIDE HURTS TO LIE ON SIDE OR MOVE CERTAIN WAYS, HIPS HURT
Number of years since you developed symptoms of fibromyalgia: 8YRS
Do your symptoms include brain fog: YES
Number of years since you developed the brain fog: DONT REMEMBER
Describe the extent of your brain fog: FORGETTING WHERE I PUT THINGS, AND STUFF I MAY HAVE SAID JUST THE DAY BEFORE
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: PCP-- EXHAUSTED ALL HE COULD DO. ENDOCRINOLOGIST-- FOCUSES ON THYROID RHEUMATOLOGIST-- JUST LISTENS AND HASN'T REALLY DONE TOO MUCH LATELY
What remedies or medications have you tried: STARTED WITH ANTI-IMFLAMMATORIES, WENT TO CYMBALTA, AND NOW AM ON EFFEXOR XR
What makes you feel better: DEPENDS-- A HOT SHOWER UNTIL I GET OUT THEN I'M BACK TO SQUARE ONE
What makes you feel worse: ANY KIND OF OVER DOING IT(ECT. HOUSEWORK, EXERCISE, WORK....)
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: I TAKE SYNTHROID DAILY
Your theories or comments:
Are we missing any important questions:

04/06/2009
First Name: Donnie
Age: 41
Male or Female: Male
City: Dublin
State/Province: Georgia
Country: USA
How long have you lived there: Life
Where were you born: Dublin
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: Quality Engineer at a Tractor Assembly Plant
How has Fibro affected your ability to work: I have to be mentally clear at all times and the fog causes difficulties in this. Pain, Stiffness.
How has Fibro affected your life: Depression, concerns about the future, Inability to do things with my kids at times.
What were your first symptoms: Widespread pain and muscle stiffness, fatigue, depression.
Your age at onset of symptoms: 23
How fast was your rate of decline: comes and goes, but fairly steady rate of decline.
What are your current symptoms: muscle twitching, burning, pain and stiffness and extreme fatigue at times.
Number of years since you developed symptoms of fibromyalgia: 18
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 5
Describe the extent of your brain fog: can't remember certain words when trying to speak, unable to concentrate.
Estimate number of doctors you have seen for Fibro related symptoms: 6
Do your doctors tend to focus on all your Fibro symptoms: No
Do your doctors treat your symptoms individually or collectively: individually
Describe your experience with doctors: Lack of concern and understanding, treating the symptoms but not the cause.
What remedies or medications have you tried: Ultracet, Lyrica, Cymbalta, and otc products.
What makes you feel better: Lots of rest. Ultracet on bad days.
What makes you feel worse: Excessive physical exertion will cause me problems the next day.
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:

04/05/2009
First Name: karen
Age: 49
Male or Female: female
City: corvallis
State/Province: OREGON
Country: Usa
How long have you lived there: life
Where were you born: LA CA
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: yes
What is Your Line of Work: housecleaning
How has Fibro affected your ability to work: cut down to half time
How has Fibro affected your life: less energy, sleep, less sex life, almost constant low level pain, some high level pain, fear
What were your first symptoms: I think sheets of crawling prickly feeling down inside of left leg.
Your age at onset of symptoms: 41
How fast was your rate of decline: very slowly. Just now at 48 being labeled.
What are your current symptoms: all tender spots, sharp apin up inside and outside of legs, tightness up and down back by spine, pain in left side, sometimes waves of dizziness and nausa, taste in mouth, tightness in chest, fatigue, problem sleeping
Number of years since you developed symptoms of fibromyalgia: 7
Do your symptoms include brain fog: sometimes
Number of years since you developed the brain fog: 3
Describe the extent of your brain fog: comes for maybe two to three days 4x a year
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: am working with PT right now who thinks it might be related to SI injury. Other doctors have told me I will have to look into immune problems. My doctor now is ruling out problems nutritionally and checking that surguries are okay.
What remedies or medications have you tried: none yet. Lots of PT, exercise, diet change, working on getting better sleep.
What makes you feel better: Exercise, walking
What makes you feel worse: sitting
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride: tap, toothpaste
Have you made dietary changes to avoid any other neutrotoxins: all organic diet and cleaners
Have you tried any thyroid specific treatments: thyroid testing good
Your theories or comments: have none so far, interested in bacterial film theory, have been around hospitals alot
Are we missing any important questions:

04/05/2009
First Name: Judy
Age: 62
Male or Female: female
City: Glen Burnie
State/Province: Maryland
Country: USA
How long have you lived there: 8 years
Where were you born: Baltimore
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: medical secretary
How has Fibro affected your ability to work: I get stiff from sitting,I get confused, or cant remember words sometimes
How has Fibro affected your life: I've had to stop activities I enjoy, such as gardening,long walks,or hikes,most housework activities
What were your first symptoms: painful area's in my arms,shoulders and hips, that woke me up at night
Your age at onset of symptoms: 61
How fast was your rate of decline: moderate
What are your current symptoms: painful areas all over the body, fatigue,fibro fog at times
Number of years since you developed symptoms of fibromyalgia: 6months ago
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 4-5 months ago
Describe the extent of your brain fog: unable to think clearly, repeating questions,forgetting words
Estimate number of doctors you have seen for Fibro related symptoms: 3
Do your doctors tend to focus on all your Fibro symptoms: my primary doesnt, my rheumatologist does,my Pain Management doctor treats a painful area with acupuncture
Do your doctors treat your symptoms individually or collectively: individually
Describe your experience with doctors: my primary doctor only say" you have to push yourself thru the pain", and prescribed the cymbalta my rheumatologist recommended, my rheumatologist is very thorough, examining tender spots each visit, asking about pain and levels of sleep.orders blood tests periodically to check for any changes,has also given me a counselor's name, if I wanted someone to talk to. My Pain Management doctor gives me acupuncture just for painful areas.
What remedies or medications have you tried: ultram, lyrica, cymbalta,CoQ-10,super B complex, omega 3 fish oil,glucosamine chondroitin,multi-vitamin
What makes you feel better: lyrica,cymbalta,ultram,vitamin B-complex, CoQ-10
What makes you feel worse: none
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:

04/04/2009
First Name: Kaaran
Age: 39
Male or Female: Female
City: Adelaide
State/Province: South Australia
Country: Australia
How long have you lived there: 4 months
Where were you born: New Zealand
Is this the first time you have taken our questionnaire: Yes
If not, why are you returning:
Are you still working: Hope so
What is Your Line of Work: Child care
How has Fibro affected your ability to work: I had an amazing day with lots of energy and felt so happy that I asked hubby if we could go out for dinner afterwards - Weird! I didn't know it was possible, but the pain disappeared when I did something I loved!!!
How has Fibro affected your life: I am so tired, and so scared of what the future holds!!!
What were your first symptoms: Really really tired, then went to the doctor because of pain that prevented me from using my hands
Your age at onset of symptoms: 39
How fast was your rate of decline: Within a month it went from being just tired and weak to extreme pain
What are your current symptoms: Sun hurts my eyes. Sometimes my sense of smell becomes ridiculously strong. Pain in my bones that moves to different parts of my body Even knitting a few rows makes me need to have a rest
Number of years since you developed symptoms of fibromyalgia: Within the last couple of months
Do your symptoms include brain fog: Oh Yeah!
Number of years since you developed the brain fog: 1 month
Describe the extent of your brain fog: I can't think to type in logical sentences. I want my husband to guide me step by step through simple tasks like getting ready for work. It feels like my head is full of cotton wool
Estimate number of doctors you have seen for Fibro related symptoms: 2
Do your doctors tend to focus on all your Fibro symptoms: I was in denial because I didn't know what it was, but was sure I just had a virus... Doc #1 has done so many blood tests... Doc#2 says I need to see a psychologist for depression and go on anti depressants
Do your doctors treat your symptoms individually or collectively: Only treatment thus far is over the counter pain medication
Describe your experience with doctors: Doc #1 is amazing, but he is on holidays so I can't see him till after Easter. I am really looking forward to seeing him again to see what he recommends I do now that I know for sure I have Fibromyalgia
What remedies or medications have you tried: Only Paracetamol and Iboprofen
What makes you feel better: 2 Paracetamol, 2 Iboprofen and 2 Multivitamins taken all at the same time
What makes you feel worse: Talking about the future with a friend that has had it for years... she told me some really scary stuff!!!
Have you tried avoiding fluoride in your diet: No
If so, which sources of fluoride: I don't know if our water is fluoridated. Is fluoride bad???
Have you made dietary changes to avoid any other neutrotoxins: What is a neurotoxin? I am trying to eat as much healthy food as I can in each meal
Have you tried any thyroid specific treatments: No
Your theories or comments: I have found a link with myself and 2 others... Contact with chemicals in the past... specifically Lead, Mercury and Formeldahyde. Also my symtoms screamed towards me when my life changed in a depressing way (Last child left home which makes me really sad and depressed about the future)
Are we missing any important questions: I really think it is linked to depression!!! Is it better to experiment with different concoctions of drugs which may or may not work, or do what I am doing and not take anything other than over the counter vitamins and painkillers??? Is it related to not enough sleep over the years? (I am insomniac) or diet? (I have never looked after myself properly)

04/04/2009
First Name: STEPHANIE
Age: 42
Male or Female: FEMALE
City: CAIRNBROOK
State/Province: PA
Country: USA
How long have you lived there: 6 YEARS
Where were you born: WINDBER, PENNSYLVANIA
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: CLERICAL
How has Fibro affected your ability to work: YES
How has Fibro affected your life: YES
What were your first symptoms: BACK PAIN AND FATIGUE
Your age at onset of symptoms: 38
How fast was your rate of decline: MODERATE
What are your current symptoms: WIDESPREAD MUSCLE PAIN & STIFFNESS FATIGUE GNAWING PAIN IN RIBCAGE SKIN SENSITIVITY IRRATABILITY NOISE SENSITIVITY RAGE
Number of years since you developed symptoms of fibromyalgia: 5
Do your symptoms include brain fog: YES
Number of years since you developed the brain fog: 2
Describe the extent of your brain fog: IT HAS WORSENED TO THE DEGREE THAT I CAN BARELY FUNCTION AT WORK OR AT HOME, EG BILLS, MEMORY, ETC
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: HUGE FAILURE DUE TO LACK OF CONCERN
What remedies or medications have you tried: LYRICA, ANTI-DEPRESSENTS, CHIROPRACTIC, MASSAGE, H20 THERAPY,PAIN MEDS.
What makes you feel better: HEAT, PAIN MEDS TAKE EDGE OFF
What makes you feel worse: OVERDOING ACTIVITIES, NO SLEEP,
Have you tried avoiding fluoride in your diet: NO
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: NO
Have you tried any thyroid specific treatments: NO
Your theories or comments: I DO BELIEVE THAT FIBRO COMES FROM ENVIRONMENTAL TOXINS AND I BELIEVE THAT WE ARE CLOSE TO A CURE.
Are we missing any important questions:

04/03/2009
First Name: Ronel
Age: 48
Male or Female: Female
City: Walvisbay
State/Province: Erongo reagen
Country: Namibia
How long have you lived there: 13 years
Where were you born: Nababeeb RSA
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: Restoring furnisher and needlework and gardening
How has Fibro affected your ability to work: The pain is excrutiating. Especially in the afternoons and by bedtime I am so tired that I cannot relax.
How has Fibro affected your life: The pain and the fact that I am so tired slow my working progress a lot.
What were your first symptoms: Pain and swelling in my shoulderblade.
Your age at onset of symptoms: 44 years old
How fast was your rate of decline: Very fast
What are your current symptoms: Pain in my muscles, headaches, tiredness.
Number of years since you developed symptoms of fibromyalgia: 4 years
Do your symptoms include brain fog: no
Number of years since you developed the brain fog:
Describe the extent of your brain fog:
Estimate number of doctors you have seen for Fibro related symptoms: 2
Do your doctors tend to focus on all your Fibro symptoms: Not sure
Do your doctors treat your symptoms individually or collectively: collectively.
Describe your experience with doctors: They told me that I have psycological problems until I point the exact point where the pain is. Now they believe me but tell me they can do nothing for me, so I stay away from the doctors.
What remedies or medications have you tried: Ultimag, prescribed by the doctor. Vit C, turmeric capsules, cayenne pepper capsules, Applecider vinegar, flaxseed oil capsules
What makes you feel better: All the above help to keep me going until half past 12 in the mornings.
What makes you feel worse: If I don't drink the above mentioned capsules
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: Drink 1,5 liter tea a day. consist of 1 sacket of Rooibos, 2 green tea, 1 fruit tea in 1,5 liter boiling water. I let it cool and drink it during the day.
Have you tried any thyroid specific treatments: No thyroid problems
Your theories or comments:
Are we missing any important questions:

04/02/2009
First Name: Ali
Age: 18
Male or Female: Female
City: Muskego
State/Province: Wisconsin
Country: United States
How long have you lived there: Entire Life
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 Snowboard/Ski Instructor
How has Fibro affected your ability to work: When I was first diagnosed... I couldn't work. Getting educated and strengthening the mind, body, and spirit brought me back!
How has Fibro affected your life: I had to do my last year of high school online because I was too sick to go... I lost all my friends, the things I like to do, myself, and most of all, my future.
What were your first symptoms: Brain Fog, Horrible arm/neck/shoulder/ back/ knee pain, tiredness, weakness.
Your age at onset of symptoms: 16
How fast was your rate of decline: Within months of the symptoms I was at my worst.
What are your current symptoms: Short-Term Memory Loss Sore, Aching spine & neck Brain Fog Irritable Bowel/Bladder Syndrome
Number of years since you developed symptoms of fibromyalgia: 2 1/2 years
Do your symptoms include brain fog: Yes
Number of years since you developed the brain fog: 2 1/2 Years
Describe the extent of your brain fog: I'll be driving somewhere and forget where I'm going; I'll be watching TV and the commercials will come on and I'll forget what show I was watching; I'll forget the names of friends... I'm 18 years old.
Estimate number of doctors you have seen for Fibro related symptoms: 10+
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: Staying active, doing things I enjoy, and being around people that make me happy.
What makes you feel worse: Being Solitary, Stress, Certain Foods
Have you tried avoiding fluoride in your diet: Not yet... Starting Today!!
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:

04/01/2009
First Name: carol
Age: 55
Male or Female: female
City: thornton
State/Province: ar
Country: calhoun
How long have you lived there: 45 yrs
Where were you born: little rock ar
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: factory
How has Fibro affected your ability to work: i am not able to work.
How has Fibro affected your life: constance pain, i forget things, don't sleep well,tired,cry alot,lift much or open things
What were your first symptoms: back,shoulder and neck pain ,depression
Your age at onset of symptoms: 53
How fast was your rate of decline: very fast
What are your current symptoms: wide spread pain,can't remember things,cry alot,fall down and my balance is off,can't sleep, tired all the time,hands tingle and go numb,hands swell and stiff,body jerks
Number of years since you developed symptoms of fibromyalgia: about 4 yrs; dignosed 1/17/08
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 3 or 4 yrs
Describe the extent of your brain fog: i forget to turn off the stove or bath water,i forget details,things used to cook by memory i now have to look up i misplace things such as my glasses or keys, sometimes when i'm talking i lose my train of thought and forget what i was saying
Estimate number of doctors you have seen for Fibro related symptoms: 1- Dr.Mosley Camden Ar.
Do your doctors tend to focus on all your Fibro symptoms: i don't think so
Do your doctors treat your symptoms individually or collectively: when i complain about a symptom he just adds another pill
Describe your experience with doctors: i get very upset with him because he is always telling me there is no quick fix for this. i understand that,but my symptoms are real and i need help.i have been off work since 1/17/08 and i'm fighting for my disability since he said i would never be able to work again so i have no income or insurance and now he acts like he doesn't want to see me ,he just calls me in more meds. he has been my doctor since 1995 so i am very disappointed with him
What remedies or medications have you tried: zoloft, tramadol,enalapril maleate,zanaflex,mirtazapin, mucinex,is what i'm taking now aleve, tylenol
What makes you feel better: heating pad,aleve,trying to rest or nap often
What makes you feel worse: lifting things
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: sometimes i think if i'm going to hurt and feel so lousey all the time is life really worth it. i don't get out much or do alot of things i used to do[working in the yard,going to festivals or even shopping[ it all makes me hurt too bad
Are we missing any important questions:

04/01/2009
First Name: KERRY
Age: 46
Male or Female: FEMALE
City: PMB
State/Province:
Country: SA
How long have you lived there:
Where were you born: SOUTH AFRICA
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: GRAPHIC DESIGNER
How has Fibro affected your ability to work: DIFFICULTY CONCENTRATING AND PHYSICAL DISCOMFORT
How has Fibro affected your life: AS ABOVE
What were your first symptoms: CLICKING BONES, TINGLING IN EXTREMITIES AND PAINFUL JOINTS AND TENDONS AND MUSCLES,GLANDS UNDER ARMS AND ONE IN NECK TENDER, DIZZY OR LIGHT HEADED
Your age at onset of symptoms: 45
How fast was your rate of decline: 6TH MONTH AND SYMPTOMS HAVE IMPROVED SINCE HRT / LIVIFEM
What are your current symptoms: TWITCHING MUSCLES, LOWER BACK LUMBAR PAIN, SHOULDER PAIN, BURNING FEET AND MUSCLE TENSION
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: 6 MONTHS
Describe the extent of your brain fog: MILD
Estimate number of doctors you have seen for Fibro related symptoms: THREE
Do your doctors tend to focus on all your Fibro symptoms: NO
Do your doctors treat your symptoms individually or collectively: INDIVIDUALLY EXCEPT FOR RA BLOOD TEST
Describe your experience with doctors: CONFUSING
What remedies or medications have you tried: ALL B VITAMINS, OMEGA 3, VARIOUS MINERALS
What makes you feel better: HOT BATHS, MILD EXERCISE,STRESS FREE ENVIRONMENT,HORMONE REPLACEMENT,COLD RUB,HOT PACKS,
What makes you feel worse: STRESS,WAKING IN MORNING,PRESSURE ON ANY ONE PART OF THE BODY FOR TOO LONG, NIGHTSHADE FAMILY FRUIT OR VEG, EXTREME EXERTION,LATE AFTERNOON, CHILLIES,SUGAR,
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: IT FEELS AS THOUGH THE BODY IS INFLAMMED BUT I DONT THINK THIS IS CORRECT.THIS FEELS MORE LIKE A CENTRAL NERVOUS SYSTEMS MALFUNCTION OR A VIRAL , FUNGAL OR BACTERIAL INFECTION ATTACKING THE CENTRAL NERVOUS SYSTEM..
Are we missing any important questions: THE SWOLLEN GLANDS UNDER THE ARMS SEEM TO INDICATE A VIRAL INFECTION.

04/01/2009
First Name: Lorraine
Age: 38
Male or Female: Female
City: Swindon
State/Province: Wiltshire
Country: UK
How long have you lived there: 38 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: No
What is Your Line of Work: Telecoms Engineer
How has Fibro affected your ability to work: No longer able to work
How has Fibro affected your life: Unable to go out much, Housework, Cooking, Social life, Mentally.
What were your first symptoms: Knee pain and tiredness.
Your age at onset of symptoms: 23
How fast was your rate of decline: Slow to start. Rapid this last year.
What are your current symptoms: Pain, Fatigue, Depression, Flash of light in eye, Muscle twitches, Stiffness, Restless legs,Memory loss, Confusion.
Number of years since you developed symptoms of fibromyalgia: 15
Do your symptoms include brain fog: Yes
Number of years since you developed the brain fog: 5
Describe the extent of your brain fog: Can't remember things which clearly happened as my friends insist they did. Can,t remember short term appointments. Intelligence level has dropped i.e. recent test results for an online test was terrible - would have cruised 6/7 years age. Reading and concentrating is hard.
Estimate number of doctors you have seen for Fibro related symptoms: 2
Do your doctors tend to focus on all your Fibro symptoms: Yes. Mostly, but tends to dismiss some things as a separate symptom and will deal with later
Do your doctors treat your symptoms individually or collectively: Collectively. He is treating me for Fibromyalgia and depression I believe.
Describe your experience with doctors: My last doctor was very dismissive telling me to put up with back pain and only offering pain killer which never worked. My new doctor is much better but getting a proper diagnosis is still a problem as I have new medication and have to wait to see what happens.
What remedies or medications have you tried: Amitriptylene, co-codomol, fluoxetine. Lots of pain killers.
What makes you feel better: co-codomol and fluoxetine lifts my mood but not really done much for pain.
What makes you feel worse: Amitriptylene - Very spaced out and sedate throuhout the day. Made no difference to anything.
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: Definately think it's related to chemicals. Whether that be my own or exernal.I drink a lot of tap water? Feel like something has taken control of my body sometimes and I know alcohol really helps but is not the answer.
Are we missing any important questions: Eye problems? Have a few myself.

04/01/2009
First Name: Susan
Age: 55
Male or Female: Female
City: Covina
State/Province: CA
Country: US
How long have you lived there: 43 years
Where were you born: Ohio
Is this the first time you have taken our questionnaire: Yes
If not, why are you returning:
Are you still working: Yes
What is Your Line of Work: Manager
How has Fibro affected your ability to work: The pain can be overpowering but I don't want this to stop my life so I keep going.
How has Fibro affected your life: Limited on things that I can do. If I over do anything, the pain gets even more intense all over my body. Dealing every day and having to take pain medication that helps but doesn't take the pain away.
What were your first symptoms: Legs aching all of the time. Prior to that I caught a cold virus that I couldn't get rid of for 3 months.
Your age at onset of symptoms: 52
How fast was your rate of decline: It came on pretty fast
What are your current symptoms: Extreme pain from the top of my head to my feet. Get tired easy.
Number of years since you developed symptoms of fibromyalgia: 3 years
Do your symptoms include brain fog: Sometimes
Number of years since you developed the brain fog: about the same
Describe the extent of your brain fog: Not very often
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: I only take Norco for pain
Describe your experience with doctors: Not to great. Not that much knowledge just that it causes alot of pain
What remedies or medications have you tried: I tried Lyrica but it made my body swell up with edema. Other than that just pain pills
What makes you feel better: Not much
What makes you feel worse: If I over do it physically or I get stressed out.
Have you tried avoiding fluoride in your diet: No I thought it was only in toothpaste
If so, which sources of fluoride: Not sure. Toothpaste is the only place i thought it was in
Have you made dietary changes to avoid any other neutrotoxins: No
Have you tried any thyroid specific treatments: My doctor put me on thyroid medication last year but now tests show that I don't need it so Im not on that medication
Your theories or comments: I just wish they could find a cure for this and other types of suffering type of illnesses
Are we missing any important questions: Stem Cells. Has any tests with stem cells been done for Fibro. We paid to collect are latest Granddaughters cord blood. Companies advertize and if you pay around 1,000 they will collect the cord blood and save it

Archived Case Studies...
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