Fibromyalgia Questionnaire & Results
Latest Update: 11/19/2009
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38 QUESTIONNAIRE COMPLETED DATA FORMS FOR March 2009
03/31/2009
First Name: Carla
Age: 47
Male or Female: Female
City: Cotati
State/Province: Ca
Country: Sonoma
How long have you lived there: 17 yrs
Where were you born: Greenbrae, 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: Sales
How has Fibro affected your ability to work: No
How has Fibro affected your life: I am exhasted all weekend
What were your first symptoms: Pain after accident
Your age at onset of symptoms: 41
How fast was your rate of decline: slow, try to ignore it
What are your current symptoms: fatigue
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: 6 yrs
Describe the extent of your brain fog: mild most of the time
Estimate number of doctors you have seen for Fibro related symptoms: 2
Do your doctors tend to focus on all your Fibro symptoms: no
Do your doctors treat your symptoms individually or collectively: Collectively
Describe your experience with doctors: good
What remedies or medications have you tried: aleve
What makes you feel better: sleep
What makes you feel worse: too much 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: Yes, am on synthroid
Your theories or comments:
Are we missing any important questions:
03/31/2009
First Name: cynthia
Age: 61
Male or Female: female
City: brick
State/Province: nj
Country: usa
How long have you lived there: 61 years
Where were you born: usa
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: no
What is Your Line of Work: i owned /operated a nail salon for 30 yrs.-also a certified massage therapist.
How has Fibro affected your ability to work: yes! absolutely-coupled with osteoarthritis-which has deformed my fingers-so as to make working an impossibility.
How has Fibro affected your life: almost always in pain-can tell when theres going to be a change in the weather-barometric pressure-get very dizzy-very nauseated-crave coca cola-and carbs. seems to curb the nausea-almost feel as though my blood sugar level drops.can,t tolerate too much exercise-if i walk too long a period-i suffer greatly the next day.
What were your first symptoms: body continuously aching-wishing a steam roller could run over my back-to relieve the aches and pains.
Your age at onset of symptoms: 29
How fast was your rate of decline: fast
What are your current symptoms: continual aches and pains-and accompanying nausea-dizzy-listless
Number of years since you developed symptoms of fibromyalgia: 32
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 25
Describe the extent of your brain fog: cannot concentrate-forget what movie/videos name is 5 minutes after reading or being told the name-
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: most think that its exaggerated-dismiss it for "well! you,re getting older!"
What remedies or medications have you tried: hot showers-anti-anxiety meds.-as i mentioned-eat carbs.soda to try to quell the nausea-trying to sleep away the pain-
What makes you feel better: clear dry weather-
What makes you feel worse: rain-snow-thunderstorms
Have you tried avoiding fluoride in your diet: yes
If so, which sources of fluoride: tap water-pesticides
Have you made dietary changes to avoid any other neutrotoxins: yes
Have you tried any thyroid specific treatments: radiation-for my thyroid and seperate radiation on eyes-thyroid medication-syntroid
Your theories or comments: think alot of these symptoms are exasserbated-from extreme changes in the barometric pressure-
Are we missing any important questions: no
03/31/2009
First Name: Mary
Age: 31
Male or Female: Female
City: Newtownabbey
State/Province: County Antrim
Country: Northern Ireland
How long have you lived there: 10 years
Where were you born: Tennessee
Is this the first time you have taken our questionnaire: Yes
If not, why are you returning:
Are you still working: Homemaker
What is Your Line of Work: For the past 10 years have been a homeschool stay at home mom
How has Fibro affected your ability to work: I get tired very easily even doing ordinary housework, have to nap/rest a lot, frequent pain can make it hard to concentrate
How has Fibro affected your life: Hard to get more than the very basics done b/c of tiredness & pain
What were your first symptoms: Started as flu-like symptoms: general aches, sore jaw/ear, sore throat, tiredness (started out as the flu but then flu symptoms took months to go away and I was diagnosed as having post-viral syndrome) - I will note that it all started a month after a major depressive relapse caused by doctors taking me off my antidepressant (Effexor) too quickly - I was put back on the Effexor and improved mentally after five weeks, but then got the flu
Your age at onset of symptoms: 30
How fast was your rate of decline: Pretty fast - I got the flu several times with only about a month in between each bout, each time it would last several months - and since the last flu (started 6 mo. ago & lasted 3 months) the tiredness & pain have not gone away
What are your current symptoms: Frequent, often debilitating fatigue - frequent, often debilitating pain varying in intensity, esp. in neck and shoulders but often in lower back, arms, thighs, hands, wrists and heel of foot as well, or just an all over achy feeling - symptoms much worse if I get even a small cold - weight gain - often feeling mildly warm all over as if I have a low grade fever - occasional mild dizziness on standing up - IBS symptoms - nausea at times - restless legs - trouble falling asleep (take Ambien for that)
Number of years since you developed symptoms of fibromyalgia: 1 - but I can now see that I probably had milder symptoms off & on for the 6 years previously
Do your symptoms include brain fog: Sometimes
Number of years since you developed the brain fog: 1
Describe the extent of your brain fog: Doesn't occur all the time, but in general just harder to remember things I want to do & not thinking as clearly
Estimate number of doctors you have seen for Fibro related symptoms: 2
Do your doctors tend to focus on all your Fibro symptoms: I think so - they're still running blood tests to rule out anything else
Do your doctors treat your symptoms individually or collectively: Collectively, but I'm not sure how much they'll be able to do
Describe your experience with doctors: Very slow process, took a long time to take it seriously, kept writing it off as "post-viral syndrome" even when I had it three times in a row!!
What remedies or medications have you tried: Was taking lots of vitamins already & Krill Oil and 2,000 mcg of B12 as they had helped my depression a lot. Am looking into vitamins/nutrients suggested by Dr. Murphree in the US because he specialises in naturally treating fibromyalgia - and also any helpful remedies I find on this site!
What makes you feel better: Pacing myself keeps me from crashing as hard - taking codeine/paracetamol combination (paracetamol = Tylenol) can take the edge off the pain - rest often helps if the pain is really bad, makes it get milder
What makes you feel worse: Doing too much when I have a better day
Have you tried avoiding fluoride in your diet: Yes
If so, which sources of fluoride: We don't have it in the water here, so I have been avoiding it in toothpaste for the past five or so years
Have you made dietary changes to avoid any other neutrotoxins: Try to eat whole unprocessed foods, severely limit sugar
Have you tried any thyroid specific treatments: No, but I am looking into whether I have low thyroid. Dr. Murphree says that a good way to test for low thyroid is to take temperature with mercury thermometer for 10 minutes under arm immediately upon waking, so I want to try that (97.8 and lower is supposed to suggest a low thyroid)
Your theories or comments: From what I've heard it can often come after a stressful event, and that happened with me (major depressive relapse) - I think some people don't deal with stress as easily as others, including environmental stresses, physical stresses, life stresses (like having babies!!)
Are we missing any important questions: I notice that there were some good questions that aren't there anymore, such as "Did you ever have a long lasting virus?" (which I saw on this link: http://www.earthclinic.com/fibro.htm)
03/30/2009
First Name: Terri
Age: 51
Male or Female: Female
City: Lebanon
State/Province: Ohio
Country: USA
How long have you lived there: Three Years
Where were you born: Beech Grove, IN
Is this the first time you have taken our questionnaire: Ywa
If not, why are you returning:
Are you still working: Yes
What is Your Line of Work: Computer input
How has Fibro affected your ability to work: Lots of pain in legs, back, shoulders. Type for a while and then stretch for a couple of minutes.
How has Fibro affected your life: Hard to get up in the morning without pain. If working around house, do pretty good, but as soon as I stop and sit down, I become sore.
What were your first symptoms: Stiff and sore in upper back area
Your age at onset of symptoms: Maybe 45
How fast was your rate of decline: Has gotten worse in the past year.
What are your current symptoms: Pain in all pressure points when the doctor tested me. Don't sleep well and take ambien and still don't get a good night's sleep.
Number of years since you developed symptoms of fibromyalgia: About seven
Do your symptoms include brain fog: No
Number of years since you developed the brain fog:
Describe the extent of your brain fog:
Estimate number of doctors you have seen for Fibro related symptoms: 1
Do your doctors tend to focus on all your Fibro symptoms: Yes
Do your doctors treat your symptoms individually or collectively:
Describe your experience with doctors: When I first started complaining of not sleeping well, she prescribed ambien. It did help for a while.
What remedies or medications have you tried: Mobic, cymbalta, flexeril, valium
What makes you feel better: cymbalta, flexeril, valium
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:
Have you tried any thyroid specific treatments: Goiter removed several years ago but my thyroid levels come back fine
Your theories or comments: I have been taking the cymbalta, flexeril and valium for over six weeks and feel like a completely different person.
Are we missing any important questions:
03/30/2009
First Name: Lora
Age: 25
Male or Female: Female
City: Monrovia
State/Province: Maryland
Country: USA
How long have you lived there: 25 years
Where were you born: Gaithersburg, 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: I am an Elementary School Special Educator
How has Fibro affected your ability to work: I am consistently fatigued and sluggish. I also have brain fog in the mornings (until about lunch time) which makes it difficult to deliver effective instruction.
How has Fibro affected your life: I cannot sleep without medication. I have constant muscle pain and bone aches. I often cannot concentrate and my brain stutters. I have extreme trouble waking up in the morning and have been late to work, missed appointments/classes/engagements. Friends have written me off as lazy because of the amount of sleep I seem to need to function. I have been misdiagnosed as depressed and put on dangerous medication which made me gain large amounts of weight. I have felt out of control of my own body and life. While most of this has been more or less remedied by a maintenance routine, my adult life has definitely been affected by fibro.
What were your first symptoms: Difficulty falling asleep, waking feeling unrested, muscle pain.
Your age at onset of symptoms: 18
How fast was your rate of decline: From 18 to 21 I went from 3 or 4 symptoms to a multitude of symptoms.
What are your current symptoms: Difficulty falling asleep, difficulty staying asleep, difficulty waking up, brain fog, bone ache, nausea, depression, muscle ache/fatigue, physical fatigue, memory loss, myofascial pain, muscle cramps, brain racing, sensitivity to pain, lightheaded,
Number of years since you developed symptoms of fibromyalgia: 7 years.
Do your symptoms include brain fog: YES
Number of years since you developed the brain fog: 5 years
Describe the extent of your brain fog: I often cannot hold a conversation because I cannot pin down the thought that I wished to express. I often cannot focus on what others are saying to me and miss huge chunks of conversations. I forget what I am doing and often forget where I am going while driving.
Estimate number of doctors you have seen for Fibro related symptoms: at least 20
Do your doctors tend to focus on all your Fibro symptoms: No, usually only the pain and sleep issues.
Do your doctors treat your symptoms individually or collectively: My current doctor tries her best to treat symptoms collectively, but find it difficult.
Describe your experience with doctors: I have had doctors tell me that I am making my symptoms up. I have had doctors misdiagnose me and prescribe harmful medications. It has taken 5 out of the 7 years that I have had fibro symptoms to find a doctor who seems like she actually cares about my well being.
What remedies or medications have you tried: Cymbalta, Zolpidem, Paxil, Cytomel, Cyclobenzaprene, Accupuncture, Diazapam, Lunesta, Rozerem,
What makes you feel better: Marijuana, Exercise, Massage, Yoga, Healthy Diet, Cytomel.
What makes you feel worse: Processed foods, sedentary lifestyle, lack of sleep, stress, most chemical based medications.
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. I do not eat processed sugar, caffeine, hydrogenated oils, phenylalanine, and other food chemicals.
Have you tried any thyroid specific treatments: Yes. I have been through a lot of thyroid testing and am on Cytomel for tyroid and energy.
Your theories or comments: I firmly believe that all of the symptoms stem from chemical imbalance in the brain. Totally unfounded...just a feeling.
Are we missing any important questions: nope!
03/29/2009
First Name: Jemima
Age: 52
Male or Female: Female
City: Coatbridge
State/Province: Lanarkshire
Country: Scotland
How long have you lived there: 52 years
Where were you born: Scotland
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: yes
What is Your Line of Work: Learning Support Assistant
How has Fibro affected your ability to work: Find it difficulty going upstairs doing different things in my job
How has Fibro affected your life: Iam finding it more difficulty to do a lot of things now.
What were your first symptoms: In my feet and hands
Your age at onset of symptoms: dont know
How fast was your rate of decline: getting worse
What are your current symptoms: effecting feet hands fingers legs a lot of my body.
Number of years since you developed symptoms of fibromyalgia: 1 year 6 months
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: no
Do your doctors treat your symptoms individually or collectively: no
Describe your experience with doctors: Have been getting tests done loking for other problems
What remedies or medications have you tried: pain killers
What makes you feel better: heat
What makes you feel worse: cold weather getting up in the morning excerise and resting.
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: thyroxin
Your theories or comments: no
Are we missing any important questions: is there anythine I can do to change my diet to help me
03/29/2009
First Name: pat
Age: 64
Male or Female: female
City: new orleans
State/Province: la.
Country: usa
How long have you lived there: 64 years
Where were you born: new orleans,la.
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: special education para(elementary)
How has Fibro affected your ability to work: can't sit or stand very long.Unableto lift students with special needs.Some days I can hardly walk. it seems to take every bit of energy I can muster up to do such a simple task.
How has Fibro affected your life: I do not sleep well at all. I awake several times at night moaning and groaning.IF i turn over to reposition myself it wakes me .The pain is that unbearable .
What were your first symptoms: MY INNER LEFT KNEE WOULD HURT ME SO BAD WHEN I WORKED TWO JOBS.(SCHOOL AND WAL-MART AT NIGHT)
Your age at onset of symptoms: AT AGE FIFTY
How fast was your rate of decline: SLOWLY AT FIRST.BUT NOW AS I GET OLDER IT SEEMS TO BE WORSE.
What are your current symptoms: I NOW HURT ALL OVER.MY NECK AND S HOULDERS.I CAN'T SWIM IN A NORMAL FASHION ANYMORE ,I SWIM LIKE A FROG.THE WATER AND EXERCISE IN THE POOL SEEMS TO HELP ME SOME. MY HANDS HURT ALL THE TIE I NOW HAVE TWO TRIGGER FINGERS. MY RIGHT HIP GIVES ME THE MOST TROUBLE.WHEN I TRY TO GO FOR A WALK IN THE NEIGHBORHOOD MY RGHT HIP GETS EXCRUCIATING PAIN IN IT.tHIS RADIATES DOWN THE BACK OF MY WHOLE LEG.MY FEET HAVE STARTED TO BOTHER ME ALSO.ALL OF A SUDDEN THEY WILL SPASUP ON ME .THEY DRAW UP AND MY TOES WILL STICK UP IN THE AIR. MY FEET SEEM TO BE GETTING WORSE.I CAN'T WEAR A SHOE THAT CLOSES AROUND MY FOOT,I HAVE TO HAVE A SLIPPER THAT I CAN GET MY FOOT OUT IN A HURRY.ALSO IF I DRIVE AS GOOD WAYS MY RIGHT HIP STARTS WITH THE PAIN.IF YOU RUN YOUR HAND DOWN MY RIGHT HIP YOU CAN ACTUALLY FELL THE MUSCLE.WHEN I LOOK AT IT IN THE MIRROR I CAN SEE IT.IT REMINDS ME OF A RUNG ON A WASHBOARD.
Number of years since you developed symptoms of fibromyalgia: 15
Do your symptoms include brain fog: ITHINK IT DOES AT TIME
Number of years since you developed the brain fog: not sure,i am just starting to notice it.
Describe the extent of your brain fog: some days i will start to do something and immediatley i forget. i have to stop and think for a few minutes.my children tease me that i have bran fog.
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 doctor tries different things.antinflamatory medsand injections.it seems after a while it stops working .NOW I JUST TAKE NAPROXSEN AND TYLENOL,CAN'T AFFORD THEINJECTIONS ANY MORE.NO JOB,NO INSURANCE.I JUST LIVE FROM DAY TO DAY.
Do your doctors treat your symptoms individually or collectively: INDIVIDUALLY
Describe your experience with doctors: ALL HAVE BEEN NICE AND HELP ME TO FIND DIFFERENT WAYS OF EXERCISING TO HELP MY MUSSCLES.I WENT TO A RHUMATOLOGIST FOR SOCIAL SECURITY AND HE WAS A REAL JERK.ALL HE DID WAS MOVE MY LEFT LEG UP AND DOWN AND SAID I HAD GOOD MOVEMENT.I GUESS I DID,I DIDN'T EXERT MYSELF AT ALL.
What remedies or medications have you tried: MAYBE 20 OR THIRTY DIFFERENT ANTI NFLAMATORY MEDS.DIFFERENT OINTMENTS.EVEN WENT TO PHYSICAL THEREPY AFTER I WAS IN A CAR ACCIDENT.THAT WAS WONDERFUL THE THEREPY.IT HELPED A GREAT DEAL.BUT 3 DAYS A WEEK IS VERY EXPENSIVE.MY RIGHT HIP WAS VERY SENSITIVE TO IT.I WOULD HOLD MY BREATH AND TEARS WOULD RUN DOWN MY FACE.I WOULD HAVE TO MAKE HIM STOP AFTER ABOUT 20 OR THIRTY SECONDS.
What makes you feel better: DOING WATER AROBICS AND SWIMMING.I CAN ONLY DO THIS IN THE WARM MONTHS THOUGH.I WENT IN THE POOL ABOUT THREE WEEKS AGO.THE WATER WAS ICE COLD.AFTER MY BODY ADJUSTED TO THE COLD I COULD SWIM AROUND AND EXERCISE.I FELT A LOT BETTER AFTERWARD AND WAS ABLE TO GET MY HOUSEWORK DONE AND RUN A FEW ERRANDS.IFELT GREA THAT DAY.DON'T UNDERSTAND WHY.
What makes you feel worse: IF THE BAROMETRIC PRESSURE DROPS BELOW 30 I KNOW IT.THAT IS WHEN I HURT WORSE.WHEN HURRICANE KATRINA CAME THROUGH I WAS ALMOST UNABLE TO MOVE AT ALL.WENT TO DOCTOR AND GOT AN INJECTION THAT NEVER EVEN SEEMED TO WORK AT ALL.IT USE TO HELP ME FOR ABOUT 2 OR THREE MONTHS
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,I STOPPED EATING SEAFOOD,ESPECIALLY CRABS,SHRIMP,CRAWFISH BECAUSE OF THE IODINE CONTENT.
Have you tried any thyroid specific treatments: JUST MY MEDS
Your theories or comments: I JUST WISH THERE WAS SOMETHIN I CAN TAKE TO GET ME BACK TO THE WAY I WAS.I WILL NOT TAKE ANY PRESCRIBED PAIN MEDS.I DON'T WANT TO LIVE ADDICTED TO THAT LIKE SOME OF MY RELATIVES AND FRIENDS DO.I WILL SUFFER FIRST.
Are we missing any important questions: DON'T KNOW
03/28/2009
First Name: larissa
Age: 26
Male or Female: female
City: brighton
State/Province: east sussex
Country: uk
How long have you lived there: 3 years
Where were you born: no, born in US
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: PhD student
How has Fibro affected your ability to work: i suffer from constant fatigue and pain that makes it hard to focus and get things done. its always a struggle.
How has Fibro affected your life: how has it not? im 26 lived with this for ten years. i've been in constant pain for 11 years, everyday I wake up with some kind of pain. It distrubs my sleep, my constration levels, everything. There's no escaping from it.
What were your first symptoms: migranes, neck and and sholder pain, numbness of legs and arms, dropping things.
Your age at onset of symptoms: 16
How fast was your rate of decline: progressively since 13 and keeps getting worse.
What are your current symptoms: Muscle fatigue, chronic fatigue, headaches, trigger point pain, neck stiffness, sholder stiffness, restless legs,
Number of years since you developed symptoms of fibromyalgia: 11
Do your symptoms include brain fog: yes occasionaly
Number of years since you developed the brain fog: on and off
Describe the extent of your brain fog: read something and can't focus on it, will read a sentence and have no idea what it says immidately following. hard time connecting what i read to actually understand it
Estimate number of doctors you have seen for Fibro related symptoms: 12
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: horrible.
What remedies or medications have you tried: amtryptine, mirapex, acupuncture, massage, homeopath, cortisine injections, yoga, meditation, reiki, herbal remdies,
What makes you feel better: massage, homeopathy, reiki, meditation, acupuncture, the amtryptiline just helps me sleep and im still waking up.
What makes you feel worse: stress! too much excursion
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've just recently tried it
Have you tried any thyroid specific treatments: no
Your theories or comments: it's important to realize that people can't just live a stress free life, people can't stop working because their in pain. The drugs doctors want to give most often comes with so many horrible side effects it's comes down to chosing the lesser of two evils. Do I destroy my liver from a medication or do i live in pain? There needs to be a focus on how to LIVE in the real world with it.
Are we missing any important questions:
03/26/2009
First Name: JoL.
Age: 51
Male or Female: Female
City: Tacoma
State/Province: Wa.
Country: US
How long have you lived there: 28 yrs
Where were you born: Brainerd, Mn.
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 Assitant
How has Fibro affected your ability to work: Constant pain,fatigue. Missing work.My pain is very bad when I first get up inthe morning..
How has Fibro affected your life: It limits so many things I want to do,I am very sad and frustrated at this whole thing.Nothing is helping. They usually say, meaning the doctors they do not know what to do with me.
What were your first symptoms: pain in my feet,legs,arms,everywhere
Your age at onset of symptoms: 48
How fast was your rate of decline: progressivley over a year
What are your current symptoms: pain, terrible fatigue, memory fog,sad, frustration
Number of years since you developed symptoms of fibromyalgia: 3
Do your symptoms include brain fog: yes, just recently
Number of years since you developed the brain fog: 1
Describe the extent of your brain fog: Looking at someone I know very well and forget there name.
Estimate number of doctors you have seen for Fibro related symptoms: 2
Do your doctors tend to focus on all your Fibro symptoms: no
Do your doctors treat your symptoms individually or collectively: individually
Describe your experience with doctors: They are not sure what to do. so they send me to different doctor for different symtom.
What remedies or medications have you tried: fluoxetine, gabapentin
What makes you feel better: not sure if anything does
What makes you feel worse: cold, damp weather
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride: i'm not sure
Have you made dietary changes to avoid any other neutrotoxins: no
Have you tried any thyroid specific treatments: I am on thyroid medication, have been since 1979
Your theories or comments: I would like releif, answers,
Are we missing any important questions: no
03/24/2009
First Name: Debbie
Age: 54
Male or Female: Female
City: Altoona
State/Province: KS
Country: USA
How long have you lived there: 32 years
Where were you born: Chanute, KS
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: Human Resources Assistant
How has Fibro affected your ability to work: Can no longer work due to chronic fatigue, concentration and memory loss.
How has Fibro affected your life: It totally changed everything. I used to have lots of energy, was busy all the time. Now I'm exhausted all the time and in pain. I can't do the things that used to be able to do. People don't understand - they think you look healthy. Financial Stress because I can not longer work. Stress in my marriage.
What were your first symptoms: Neck and shoulder pain. Flu-like symptons. TMJ. Chronic sore throat
Your age at onset of symptoms: 41
How fast was your rate of decline: Started out slow, but in 2000 suddenly got worse.
What are your current symptoms: muscle/joint pain, constant pain, no energy, brain fog, Raynaud's, Bursitis/Tendonitis,IBS, TMJ, Depression, poor sleep, skin rashes, light/sound/chemical, sensitivities, stiffness, headaches, lack of coordination, bruising, sore throats, sensitive to cold, ringing in ears.
Number of years since you developed symptoms of fibromyalgia: 14 years
Do your symptoms include brain fog: Yes!!
Number of years since you developed the brain fog: 9 years
Describe the extent of your brain fog: Can't think clearly. Lose my train of thought while speaking. Mix-up words. Total forgetfulness.
Estimate number of doctors you have seen for Fibro related symptoms: Six
Do your doctors tend to focus on all your Fibro symptoms: Not really
Do your doctors treat your symptoms individually or collectively: They seem to want to treat them individually or not at all.
Describe your experience with doctors: It SUCKS! The P.A. who I have been seeing since the beginning of my Fibro is the best. He listens to me and has tried everything to help me.
What remedies or medications have you tried: I have tried all kinds of pain meds.(OTC and Scripts) and anti-depression meds.
What makes you feel better: Good sleep, Hot Bath, Massages, the sun. Spending time with my grandkids (I pay for it the next day or two)
What makes you feel worse: Overdueing - cleaning house, seeing my grandkids, grocery shopping, standing or sitting to long. Poor sleep. Weather change. Stress. Sometimes just doing nothing.
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 - It didn't help
Have you tried any thyroid specific treatments: No
Your theories or comments: I was told at the beginning of my symptons that I had Epstein-Barr Virus. I was wondering if that had anything to do with the Fibro. Also I have a cousin who has Fibro does it run in families?
Are we missing any important questions:
03/23/2009
First Name: Ann
Age: 62
Male or Female: Female
City: Baytown
State/Province: TX
Country: Usa
How long have you lived there: 62 yrs
Where were you born: New York
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: Med transcript
How has Fibro affected your ability to work: Completely unable
How has Fibro affected your life: Have become a shutin
What were your first symptoms: Fatigue and pain following auto accident
Your age at onset of symptoms: 46
How fast was your rate of decline: Rapid
What are your current symptoms: Pain fatigue brain fog IBS poor sleep headaches stiffness depression
Number of years since you developed symptoms of fibromyalgia: 16
Do your symptoms include brain fog: Yes
Number of years since you developed the brain fog: 16
Describe the extent of your brain fog: Afraid to drive when I have it
Estimate number of doctors you have seen for Fibro related symptoms: 4
Do your doctors tend to focus on all your Fibro symptoms: Yes
Do your doctors treat your symptoms individually or collectively: Individually
Describe your experience with doctors: Nothing helps although they probably do their best
What remedies or medications have you tried: Cymbalta lyrica zoloft
What makes you feel better: Guaifenesin bicarb soak flax seed MSM ginger tai chi castor oil pack over liver
What makes you feel worse: Msg canned food excessive activity processed food weather change hot weather air pollution humidity and cloud cover which holds toxins in Gulf Coast Area where I live
Have you tried avoiding fluoride in your diet: No
If so, which sources of fluoride: No
Have you made dietary changes to avoid any other neutrotoxins: Yes
Have you tried any thyroid specific treatments: No
Your theories or comments: Thyroid tests were good
Are we missing any important questions: Where did you live when you developed fibromyalgia
03/22/2009
First Name: Nathalie
Age: 41
Male or Female: female
City: Kitchener
State/Province: Ontario
Country: Canada
How long have you lived there: 35 years
Where were you born: Quebec, Canada
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: no
What is Your Line of Work:
How has Fibro affected your ability to work: can't work, on disability pension
How has Fibro affected your life: no energy, have body aches, can't exercise like I used to, gained weight & can't take it off
What were your first symptoms: chronic fatigue
Your age at onset of symptoms: 20
How fast was your rate of decline: slow, but accelerated dramatically after flesh-eating disease
What are your current symptoms: chronic fatigue, body aches, unable to exercise without being exhaused afterwards
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: 9
Describe the extent of your brain fog: forgot everything unless I write it down & even then I sometimes forget
Estimate number of doctors you have seen for Fibro related symptoms: 1
Do your doctors tend to focus on all your Fibro symptoms: yes, I have an excellent doctor
Do your doctors treat your symptoms individually or collectively: collectively
Describe your experience with doctors: excellent, he listens & he trusts that I know my body & mind better than he does
What remedies or medications have you tried: Wellbutrin, Celexa for depression & anxiety, amitriptyline to help me sleep at night, also eliminate foods & food additives that have been shown to trigger symptoms, such as wheat, MSG, etc.
What makes you feel better: eating healthy, homemade foods, getting outdoors a little, exercising a little, spending time with my loving & supportive family
What makes you feel worse: alcohol, wheat, too much dairy, MSG, too much exercise, not enough sleep,stress
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: yes, I avoid packaged, processed foods, I try to cook all my food myself, although this sometimes feels like such a burden because of the chronic fatigue
Have you tried any thyroid specific treatments: doctor tested for thyroid problems & found none
Your theories or comments: diet plays a huge role in how people with fibro/chronic fatigue feel
Are we missing any important questions: Ask if have ever suffered any physical or emotional (or both) trauma, since many with fibro have been in car accidents, suffered a near-fatal disease or severe physical or mental abuse
03/21/2009
First Name: Tess
Age: 47
Male or Female: F
City: Brisbane
State/Province: Queensland
Country: Australia
How long have you lived there: 44 years
Where were you born: Brisbane
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: Part time counselling from home
How has Fibro affected your ability to work: Yes
How has Fibro affected your life: On a disability pension, affects every facet of my life, financially, relationships, just getting by each and every moment with the level of pain, fatigue etc
What were your first symptoms: Neck Pain although for years I had experienced cramps in my legs
Your age at onset of symptoms: 27 although cramps from age 13
How fast was your rate of decline: Very quickly from age 27.
What are your current symptoms: Same as above although managed alot better than before I was diagnosed at age 41.
Number of years since you developed symptoms of fibromyalgia: 20 years
Do your symptoms include brain fog: Yes
Number of years since you developed the brain fog: 15 years
Describe the extent of your brain fog: Stops me from working. Affects speech, lose my sense of direction
Estimate number of doctors you have seen for Fibro related symptoms: 10
Do your doctors tend to focus on all your Fibro symptoms: The doctor I have now does.
Do your doctors treat your symptoms individually or collectively: Collectively
Describe your experience with doctors: Up until this doctor they could not even diagnose me.
What remedies or medications have you tried: I am on Liothyronine for thyroid, cortisol, creon forte for digestion plus a range of supplements and herbs
What makes you feel better: Cortisol and liothyronine mainly
What makes you feel worse: Lights, stress, starches, noise, more pain
Have you tried avoiding fluoride in your diet: Not really although I am now concerned that it has just recently been added to our water supply in Brisbane
If so, which sources of fluoride: I am not sure to the extent of added fluoride
Have you made dietary changes to avoid any other neutrotoxins: I attempt to eat simply and fresh produce and stay away from manufactured products especially with numbers
Have you tried any thyroid specific treatments: yes
Your theories or comments:
Are we missing any important questions:
03/20/2009
First Name: Sylver
Age: 25
Male or Female: Female
City: Canton
State/Province: OH
Country: USA
How long have you lived there: 6 months
Where were you born: Tuscon, AZ
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: no
What is Your Line of Work:
How has Fibro affected your ability to work: yes
How has Fibro affected your life: It has impacted every aspect of my life, from being able to get out of bed to activities of daily living. It is presently getting worse, and I would like to know what I can do about it.
What were your first symptoms: Pain and numbness in knees and wrists.
Your age at onset of symptoms: 5
How fast was your rate of decline: I feel that I have declined significantly.
What are your current symptoms: Fatigue, nausea, incontinence, pain through entire body, sleeplessness.
Number of years since you developed symptoms of fibromyalgia: 20
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 15
Describe the extent of your brain fog: Forgetting both short and long term knowledge.
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: Each doctor seems to have their own ideas of what I need and when.
What remedies or medications have you tried: Heat therapy, pain medications, meditation, and hypnosis.
What makes you feel better: Heat thearapy.
What makes you feel worse: Cold.
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: no
Have you tried any thyroid specific treatments: no
Your theories or comments: I need to find something that will allow me to gain back control over my life.
Are we missing any important questions:
03/20/2009
First Name: Linda
Age: 52
Male or Female: female
City: Winfield
State/Province: Kansas
Country: usa
How long have you lived there: 3 1/2 years
Where were you born: chicago
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: no
What is Your Line of Work:
How has Fibro affected your ability to work: yes
How has Fibro affected your life: i cant do much of anything
What were your first symptoms: pain. i am not sure i have fibromyalgia
Your age at onset of symptoms: 42
How fast was your rate of decline: very fast i feel better now than i have in years
What are your current symptoms: pain in neck and arches of feet
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: ?
Describe the extent of your brain fog: it is hard to concentrate when i hurt. i forget things.
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: they are not certain as to how to best treat it. they all give me different treatments.
What remedies or medications have you tried: soma, ultracet, neurontin , chriopractor
What makes you feel better: rest, time
What makes you feel worse: cold weather, stress
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: we are on a gluten free diet.
Have you tried any thyroid specific treatments: no
Your theories or comments:
Are we missing any important questions:
03/20/2009
First Name: Faith
Age: 45
Male or Female: female
City: Goldsboro
State/Province: nc
Country: USA
How long have you lived there: 15 yrs
Where were you born: Oxford 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: medical billing
How has Fibro affected your ability to work: I find myself mentally tired and cannot concentrate, much slower than everyone else. I also make more mistakes than I used to because I forget so many things.I worry I will lose my job.
How has Fibro affected your life: To tired most of the time to enjoy the things I used to. I get am easily frustrated because I get too tired to finish my housework. I do not have the energy to do the things I enjoy and cocentrate mostly on doing things I have to just to get through the day. I'm short tempered and irratable most of the time with my family because I don't have the emotional or mental and physical energy just to interact with them.
What were your first symptoms: fatigue, joint and muscle pain
Your age at onset of symptoms: 42
How fast was your rate of decline: gradual over the last 3-4 yrs
What are your current symptoms: headache, fatigue, joint and muscle pain, brain fog, rash,itching, nausea
Number of years since you developed symptoms of fibromyalgia: 4-5
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 2-3
Describe the extent of your brain fog: I find myself struggling to remeber things that I already know. Have trouble thinking during a conversation. Forget things in my life and my childrens lives. Cannot focus or concentrate for longer than 30 minutes at a time. Do freaky things like try to open my coffee cup with the can opener
Estimate number of doctors you have seen for Fibro related symptoms: 3
Do your doctors tend to focus on all your Fibro symptoms: the last one has
Do your doctors treat your symptoms individually or collectively: I've only been prescribed Cymbalta this time and Celexa previously
Describe your experience with doctors: So far they all seem to think I'm depressed. I had a appt with a rheumatologist last week. She said I would be called the next day to schedule bloodwork and x-rays to rule out autoimmune diseases such as psoriatic arthritis and lupus...but no one has called and it's been over a week
What remedies or medications have you tried: I have just started taking a multivitamin and a chewable vitamin D. That and the Cymbalta seem to be helping some.
What makes you feel better: excercise and not sitting for too long or doing one thing for too long...it gets painful
What makes you feel worse: overdoing anything physically and pushing myself past my fatigue limit, Sitting or standing stationary for too long/overexerting myself
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride: NA
Have you made dietary changes to avoid any other neutrotoxins: I am tring to avoid preservatives and fast food. I haven't succeeded completely yet. My goal is to also quit smoking and eat more fresh fruits and vegetables
Have you tried any thyroid specific treatments: no
Your theories or comments: hace been reading about thyroid dysfunction and wondering if that could be the culprit. I think too many preservatives and chemicals added to our food is making us sick
Are we missing any important questions: I would like to know about bottled water. Has there been any research on flouride or other harmful chemicals in bottle water? I drink alot of it due to excessive thirst. If I don't drink enough water I feel even worse. Any suggestions?
03/19/2009
First Name: Nancy
Age: 55
Male or Female: Female
City: Clovis
State/Province: California
Country: Fresno
How long have you lived there: 24yrs
Where were you born: Los Angeles Califoria
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: Haven't work in 4 months use to babysit for my grandkids, two
How has Fibro affected your ability to work: Yes I can't bend my legs wake up with stiff legs aching neck do streching
How has Fibro affected your life: Slow me down do not want to do much just what I can everyday housework
What were your first symptoms: My neck stiffness
Your age at onset of symptoms: 54
How fast was your rate of decline: 1 month
What are your current symptoms: Worsen leg stiffness can't get out bed it take mr at least 1/2 hr. Of streching.
Number of years since you developed symptoms of fibromyalgia: No years yet
Do your symptoms include brain fog: Yes
Number of years since you developed the brain fog: 3 months
Describe the extent of your brain fog: Forgetfulness alot
Estimate number of doctors you have seen for Fibro related symptoms: 3
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: 1st doctor wanted to give me a shot on my neck ask for natural way send me to see physical thraphy doctor said I was sleep deprive ask for accupunture have to wait 2 month for appointment.
What remedies or medications have you tried: Advil tylenol @ least 6-8xaday when back to my doctor she put me on mile dose of antidepressent at bedtime.
What makes you feel better: Not moving.
What makes you feel worse: 1-10 10 in morning down to 8 all day till bed time.
Have you tried avoiding fluoride in your diet: Yes
If so, which sources of fluoride: Perescription
Have you made dietary changes to avoid any other neutrotoxins: Not yet
Have you tried any thyroid specific treatments: No
Your theories or comments: My body is lacking something yes maybe I could be stress about my financial or etc but I still have time to relax.
Are we missing any important questions: No not at this time:)
03/18/2009
First Name: Jocelyn
Age: 52
Male or Female: Femail
City: Independence
State/Province: MO
Country: United States
How long have you lived there: 52 YRS
Where were you born: Denver, Colorado
Is this the first time you have taken our questionnaire: Yes
If not, why are you returning:
Are you still working: Yes
What is Your Line of Work: Office Manager
How has Fibro affected your ability to work: Not able to perform certain tasks, unable to participate in work activities or take on additional work because of the pain and the difficulties I have walking. I also can't think properly and have to constantly reread something in order to comprehend it or remember it.
How has Fibro affected your life: Horribly!! I can't lose weight due to the fact that I am in extreme pain. I am trying to obtain a Master's degree by going to classes at night, and I'm having tremendous problems with that. I have no social life because of the constant pain and having to save all my energy to go to work every day. I can't concentrate, I'm constantly feeling fatigued due to fighting the horrendous pain I have to endure. I just don't have quality of life anymore.
What were your first symptoms: I started feeling pain and intense heat in my right big toe
Your age at onset of symptoms: Probably about 26 or 27
How fast was your rate of decline: I would say 2 to 3 years
What are your current symptoms: Intense pain from my neck to my toes along with feelings of being on fire in my feet, joints and muscles; constant swelling of feet, ankles, calves, knees, fingers, hands and wrists; very sensitive to touch, trigger points are excruciating when touched; my arms and hands fall asleep while working on the computer or talking on the phone; do not sleep well; constantly tired; walk around in a fog most of the time; anxiety as a result of knowing or thinking about walking somewhere; thoughts of suicide - can't take the intense pain - don't want to live with it anymore
Number of years since you developed symptoms of fibromyalgia: 26
Do your symptoms include brain fog: Yes
Number of years since you developed the brain fog: 22
Describe the extent of your brain fog: Difficulty with concentration, can't remember simple things, have difficulty remembering how do to certain tasks, even if I have performed them repeatedly in the past.
Estimate number of doctors you have seen for Fibro related symptoms: 5
Do your doctors tend to focus on all your Fibro symptoms: No, only the pain associated with it.
Do your doctors treat your symptoms individually or collectively: Collectively
Describe your experience with doctors: They don't know much, so treat the symptoms not the cause
What remedies or medications have you tried: ibuprofen, vicoden, prozac, elevil
What makes you feel better: Taking large doses of vicoden and lying down with my feet up
What makes you feel worse: day-to-day living
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: All I know is I want to ger rid of this living hell I've had to endure for over 2 decades
Are we missing any important questions: Honestly - I really don't know, it's hard to think
03/17/2009
First Name: Pam
Age: 42
Male or Female: Female
City: Spartanburg
State/Province: South Carolina
Country: usa
How long have you lived there: Life
Where were you born: Spartanburg
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: Postmaster Relief
How has Fibro affected your ability to work: Luckily I work in a small office, and not a big facility, I am able to sit when no customers, but I notice that sometimes I can't concentrate on what I'm doing, and stumble over words and numbers
How has Fibro affected your life: I am severly depressed, it limits my ability to have fun..for instance, just playing with the grandchildren wears me out emotionally as well as physically.
What were your first symptoms: Aches in lower back and pelvis, IBS, Unable to think, Brain Fog
Your age at onset of symptoms: 38
How fast was your rate of decline: Becoming more rapid, in the last 6 months.
What are your current symptoms: Aches in back, pelvis, weakness in legs, arms, muscle aches, headaches, blurred vision, vertigo, severe fatigue
Number of years since you developed symptoms of fibromyalgia: 2
Do your symptoms include brain fog: Yes
Number of years since you developed the brain fog: 3
Describe the extent of your brain fog: Sometimes not so bad, others I can't concentrate on what I'm doing, speak correctly, or make a cognitive decision, my son says I faze out.
Estimate number of doctors you have seen for Fibro related symptoms: 1
Do your doctors tend to focus on all your Fibro symptoms: So far he's only said " you may have fibro" No definite but not a definte on anything so I am assuming this is what I have. I want more testing done for a concrete answer
Do your doctors treat your symptoms individually or collectively: individual
Describe your experience with doctors: Most doctors scoot you in and out and are not attentive so I've not received the best care.
What remedies or medications have you tried: Lyrica, Valium to sleep
What makes you feel better: sleep, but even after sleep I still wake up aching as if I slept wrong
What makes you feel worse: No activity makes me feel worse than trying to do little things, i don't know if it's because at those times I'm doing things I'm not so focused on the problems themselves, which is probably the case
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: Trying to eat a better diet lower in fats and carbs.
Have you tried any thyroid specific treatments: I'm on Sythroid but honestly when I take it, I'm so sleepy in the afternoons that I do avoid taking it daily
Your theories or comments:
Are we missing any important questions:
03/16/2009
First Name: bob
Age: 47
Male or Female: male
City: chandler
State/Province: arizona
Country: usa
How long have you lived there: 10 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: computer installation configuration
How has Fibro affected your ability to work: yes
How has Fibro affected your life: Severely limits physical activities
What were your first symptoms: severe arm pain, leg muscles started slightly after that.
Your age at onset of symptoms: 44
How fast was your rate of decline: within a year, went from 1 or 2 bad days a week to, no good days a week. might have 2-3 days a month that are... not too bad
What are your current symptoms: severe muscle pain, unable to do much physical activity, even holding a phone up to my ear causes exteam pain after just a few minutes. 1 fligh of stairs is about all i can do. slightly over weight, but not bad 5'10" @ 230lb
Number of years since you developed symptoms of fibromyalgia: 3
Do your symptoms include brain fog: sometimes, but not my primary complaint
Number of years since you developed the brain fog: na
Describe the extent of your brain fog: na
Estimate number of doctors you have seen for Fibro related symptoms: 10
Do your doctors tend to focus on all your Fibro symptoms: no, not really
Do your doctors treat your symptoms individually or collectively: 50/50 depending on doc type.
Describe your experience with doctors: been lucky, most have understood my situation, run lots and lots of tests, always normal, they do try... is frustrating for all of us.
What remedies or medications have you tried: myers cocktail, many many many supliments, anitripline, lyrcia, cymbalta, vairous pain meds,
What makes you feel better: good sleep when i can get it, resting, hydrocodone
What makes you feel worse: lack of sleep, any prolonged physical activity, walking, anything repetitive.
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride: na
Have you made dietary changes to avoid any other neutrotoxins: cut sugar intake a great deal.
Have you tried any thyroid specific treatments: no
Your theories or comments: is just a frustrating problem, long term cronic pain is so hard to live with.
Are we missing any important questions:
03/16/2009
First Name: Celia
Age: 58
Male or Female: Female
City: Hartselle
State/Province: Alabama
Country: USA
How long have you lived there: Most of my life
Where were you born: Alabama
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: Registered Nurse
How has Fibro affected your ability to work: It gets work when there is a lot of stress, and there is usually a lot of stress with my job.
How has Fibro affected your life: Some days I am too tired to do much of anything. Some week-ends I literally do nothing. I ache a great deal.
What were your first symptoms: Tender areas in my arms and back
Your age at onset of symptoms: 32
How fast was your rate of decline: It was gradual. It seems like there were months between new symptoms
What are your current symptoms: "Trigger Points", Brain fog, depression, pain in knees and legs, headaches, soreness in neck and back
Number of years since you developed symptoms of fibromyalgia: 26
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: Maybe 10, I'm not sure
Describe the extent of your brain fog: Sometimes I cannot remember words, I have a very difficult time concentrating frequently, I get distracted very easily sometimes. It gets worse when I am under a lot of stress.
Estimate number of doctors you have seen for Fibro related symptoms: 1
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: My primary physician has been very supportive. I came to him after I had read an article in a magazine about a woman with Fibro who had been to a lot of doctors. The symptoms she described the very same ones I was having. I told him I thought I had Fibro. He mashed all the trigger points and I nearly came off the table. He said he thought I had it too. He has never told me it is in my head and has stayed current on the treatment for Fibro.
What remedies or medications have you tried: Cymbalta, Lyrica, exercise, getting more sleep
What makes you feel better: All of the above
What makes you feel worse: Not getting enough sleep, being under stress, not exercising
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride: N/A
Have you made dietary changes to avoid any other neutrotoxins: no
Have you tried any thyroid specific treatments: no
Your theories or comments: I feel fortunate to have a physician who is understanding about my condition and works with me to improve my quality of life. I must say that the age I gave of onset might not be reliable. I can remember long before that that if someone poked me in my arm it hurt pretty bad and lasted for a long time, so I might have had it years before I realized it.
Are we missing any important questions: How many years were between the start of symptoms and first visit to the doctor regarding those specific symptoms? Did the doctor diagnose it right away?
03/15/2009
First Name: Davina
Age: 43
Male or Female: Female
City: Golden
State/Province: CO
Country: USA
How long have you lived there: 19 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: pediatric occupational therapy
How has Fibro affected your ability to work: now on short term disability
How has Fibro affected your life: little socialization or exercise
What were your first symptoms: headaches, body aches, fatigue, frequent illnesses
Your age at onset of symptoms: probably as a child
How fast was your rate of decline: very quick in the last year
What are your current symptoms: exhaustion, hypothyroid, adrenal exhaustion, body pain, headaches, bloating, mixed bowels, nausea
Number of years since you developed symptoms of fibromyalgia: 6 years
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 5 years
Describe the extent of your brain fog: don't like driving due to lack of concentration, forget a lot of words or what I was planning to do
Estimate number of doctors you have seen for Fibro related symptoms: 10
Do your doctors tend to focus on all your Fibro symptoms: no
Do your doctors treat your symptoms individually or collectively: both
Describe your experience with doctors: some thing there is nothing wrong, others say give it time
What remedies or medications have you tried: Cymbalta, advil, tylenol, sleep medications, librax, phenagren, allegra, advair, ultram
What makes you feel better: lots of rest, eating extremely healthy
What makes you feel worse: over doing it
Have you tried avoiding fluoride in your diet: yes
If so, which sources of fluoride: toothpaste, tap water, pesticides
Have you made dietary changes to avoid any other neutrotoxins: yes-all organic food
Have you tried any thyroid specific treatments: armour thyroid, and bio-identical hormones
Your theories or comments:
Are we missing any important questions:
03/13/2009
First Name: robert
Age: 21
Male or Female: male
City: EHT
State/Province: NJ
Country: USA
How long have you lived there: whole life
Where were you born: NJ
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: steel
How has Fibro affected your ability to work: tired, tender tendon at times
How has Fibro affected your life: tired, depressed, anxiety
What were your first symptoms: achey
Your age at onset of symptoms: 17
How fast was your rate of decline: got worse over time
What are your current symptoms: occasional sore tendon, depressed, anxiety
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: 2
Describe the extent of your brain fog: worse in morning
Estimate number of doctors you have seen for Fibro related symptoms: 1
Do your doctors tend to focus on all your Fibro symptoms: no
Do your doctors treat your symptoms individually or collectively: individually
Describe your experience with doctors: he removed a ganglion cycst from left wrist that would cause pain and reduced mobility
What remedies or medications have you tried: natural herbs
What makes you feel better: ginger root 500 mg capsules
What makes you feel worse: caffeine
Have you tried avoiding fluoride in your diet: yes
If so, which sources of fluoride: tap water
Have you made dietary changes to avoid any other neutrotoxins: yes
Have you tried any thyroid specific treatments: no
Your theories or comments: drunk tap water whole life flouride is a component, also aluminum exposure
Are we missing any important questions: Have you been exposed to heavy metals?
03/13/2009
First Name: Brenda I.
Age: 36
Male or Female: female
City: sauk centre
State/Province: mn.
Country: us
How long have you lived there: 36 years
Where were you born: mn,
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: secretary, cosmetologist, sign shop concentration
How has Fibro affected your ability to work: tiredness cant keep arms up to cut hair, weakness in putting up signs, stiffness and soarness when sitting
How has Fibro affected your life: pain limits, to tired to do anything
What were your first symptoms: tired, soar
Your age at onset of symptoms: 30
How fast was your rate of decline:
What are your current symptoms: above
Number of years since you developed symptoms of fibromyalgia: 6 years
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog:
Describe the extent of your brain fog:
Estimate number of doctors you have seen for Fibro related symptoms: 3
Do your doctors tend to focus on all your Fibro symptoms: no
Do your doctors treat your symptoms individually or collectively:
Describe your experience with doctors: they have just diagnosed me
What remedies or medications have you tried: celexa
What makes you feel better:
What makes you feel worse:
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: no
Have you tried any thyroid specific treatments: Have had thyroid for many years.
Your theories or comments: I just got diagnosed and so I am just looking for things that may help me to feel better sooner.
Are we missing any important questions:
03/12/2009
First Name: bailey
Age: 54
Male or Female: femaale
City: middleburg
State/Province: fl
Country: clay
How long have you lived there: 15yrs
Where were you born: tn
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: healthcare
How has Fibro affected your ability to work: yes
How has Fibro affected your life: yes
What were your first symptoms: pain in hands and legs, sugar sensetivity,itchy
Your age at onset of symptoms: teens
How fast was your rate of decline: slowly
What are your current symptoms: aches and pains skin hurts when blankets and clothes touch it sugar sensitivity difficulty thinking and communicating hands feel hot and swollen GERD forgetful achy difficulty falling asleep due to pain migraines occiptal nerve damage arthritis allergies asthma dry mouth back and shoulder pain painful scalp dry and itchy skin vertigo loss of balance drop things hot and cold
Number of years since you developed symptoms of fibromyalgia: 30
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 15
Describe the extent of your brain fog: short term memory lost unable to complete sentences forgetting how to spell words difficulty concentrating
Estimate number of doctors you have seen for Fibro related symptoms: 10 or more
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: not positive
What remedies or medications have you tried: medication neurotin pain therapy muscle relaxtants not eating refine sugar and bread heat therapy massage advil sleeping aides
What makes you feel better: neurotin at bedtime to help me sleep massages not drinking alcohol not no sugar or alcohol
What makes you feel worse: lack of sleep stress sugar alcohol refine grains cold air
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:
03/12/2009
First Name: Chelsey
Age: 16
Male or Female: female
City: Danville
State/Province: Illinois
Country: USA
How long have you lived there: 13 years
Where were you born: Danville, Illinois
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: student; currently being homeschooled due to the fibromyalgia
How has Fibro affected your ability to work: I have a hard time attending school
How has Fibro affected your life: I can not be active; hard to attend school, pain all of the time.
What were your first symptoms: sore throat, muscle aches, joint aches, exhaustion, swollen glands, headaches
Your age at onset of symptoms: 13 years old
How fast was your rate of decline: Every spring my symptoms get really bad.
What are your current symptoms: Muscle aches, exhaustion, low blood pressure
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: 2
Describe the extent of your brain fog:
Estimate number of doctors you have seen for Fibro related symptoms: 6
Do your doctors tend to focus on all your Fibro symptoms: yes
Do your doctors treat your symptoms individually or collectively: individually
Describe your experience with doctors: They do not understand
What remedies or medications have you tried: Naproxen, darvocet, amitryptiline, nuerontin, cymbalta, tylenol, ibuprofen
What makes you feel better: nothing really
What makes you feel worse: weather, stress, not getting enough sleep, exercise
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: no
Have you tried any thyroid specific treatments: no
Your theories or comments: I believe this was caused from a virus, that doesn't ever go away completely.
Are we missing any important questions:
03/12/2009
First Name: roshni
Age: 33
Male or Female: female
City: cerrtios
State/Province: ca
Country: usa
How long have you lived there: 11 years
Where were you born: india
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 at retail store
How has Fibro affected your ability to work: very bad
How has Fibro affected your life: bad
What were your first symptoms: occasional sleep disterbance
Your age at onset of symptoms: 28
How fast was your rate of decline: fast
What are your current symptoms: constant headache, fatigue,droopy eyelids and eye pain, no sleep no matter whatsoever
Number of years since you developed symptoms of fibromyalgia: 5 years
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 1
Describe the extent of your brain fog: 2 hours
Estimate number of doctors you have seen for Fibro related symptoms: none
Do your doctors tend to focus on all your Fibro symptoms: no
Do your doctors treat your symptoms individually or collectively: no
Describe your experience with doctors: bad
What remedies or medications have you tried: 5-htp, hydrocortisone,thyroid amrour,benadrly, hydrocodone
What makes you feel better: hydrocodone
What makes you feel worse: 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 dairy, vegetratian diet
Have you tried any thyroid specific treatments: yes armour thyroid
Your theories or comments:
Are we missing any important questions: trying accupuncutre
03/11/2009
First Name: Jennifer
Age: 51
Male or Female: Female
City: Bakersfield
State/Province: CA
Country: USA
How long have you lived there: 6 years
Where were you born: 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: Bookkeeper formerly truckdriver
How has Fibro affected your ability to work: Had to stop driving truck due to fatigue, brain fog and deteriorating vision. Now can barely make it through the day sitting on my butt. Brain fog gets progressively worse - have a few good days. Fatigue constant
How has Fibro affected your life: Have lost all enthusiasm for activities, struggle to learn anything, having speech and movement troubles. Thank goodness my hubby got a housekeeper because all I can do anymore is work at a desk and come home to sleep.
What were your first symptoms: Thought I'd had a stroke. Numbness and tingling on right side only, trouble speaking and thinking clearly, could not find words or finish sentences. MRI negative for stroke, Dr. decided to send me for sleep study.
Your age at onset of symptoms: 45
How fast was your rate of decline: Fairly rapid, but have been treating with a clinical nutritionist for 5 years and did mercury detox which helped a bit. The 5 years w/nutritionist is slowing the progression but not reversing anything.
What are your current symptoms: Brain fog (most disturbing symptom), pain in all fibro spots, arthritis like pain in ligamentss (they are deteriorating), lots of digestive problems (leaky gut, IBS, etc.) and major depression.
Number of years since you developed symptoms of fibromyalgia: 6 years unless you count all the symptoms from childhood.
Do your symptoms include brain fog: Yes
Number of years since you developed the brain fog: 6
Describe the extent of your brain fog: Trouble finding words, completing sentences, sometimes difficulty speaking. Often unable to make any sense of reading material. Forgetting how to do mental tasks that used to be rote for me. Extremely difficult (almost painful) to learn anything new. I have taken a less stressful job at about half of my old salary because I could no longer depend on my brain to do the required work. Also poor sleep contributes to brain fog and depression - a maddening circle that can't be broken!
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: Nutritionist tries to treat everything. MD writes RX for pain pills and antidepressants. I find the antidepressants make things worse. I am very resistant to most of his RX recommendations, but will take the pain meds when necessary.
Describe your experience with doctors: I am very frustrated that most MDs won't search for a cause and try to treat the cause - they are only interested in "naming" the problem and treating the symptoms. I feel very fortunate to have a chiropractor/nutritionist who spends a massive amount of time researching and trying different things with me. As long as the money holds out, I'll stick with it. She has been most helpful and has made it possible for me to continue working and functioning, even if on a reduced level.
What remedies or medications have you tried: Many many supplements, too many to list. Problem is almost anything works for a little while but does not address underlying problem. As soon as my body gets used to having it, it becomes less effective. Had my mercury fillings replaced and did a 9 month heavy metal detox which helped quite a bit. We have not yet found the "smoking gun" but keep trying to address the issues. Convinced that the whole problem is centered in the gut.
What makes you feel better: B vitamins, 5 HTP, tramodol, adrenal support
What makes you feel worse: Any antidepressant
Have you tried avoiding fluoride in your diet: yes
If so, which sources of fluoride: Prescription drugs, water (use RO filters with UV), flouride toothpaste (use Tom's w/o flouride)
Have you made dietary changes to avoid any other neutrotoxins: Constantly changing diet to address bowel problems. Very difficult to avoid all grains, but have tested allergic to corn, wheat, rye, and most other grains. I also react to just about every other food there is, including olive oil, dairy, beef, etc. Now I eat only grass-fed beef (helps) and grassfed bison. I also have eliminated plastics from my personal "food chain" and that seems to help also.
Have you tried any thyroid specific treatments: All my doctors tell me my thyroid tests are normal. But I have every symptom of hypothyroidism, including low body temperature.
Your theories or comments: I'm still hoping we can find the "smoking gun". Nutritionist thinks it's in my gut. MD says "fibro",nothing we can do but treat symptoms, have some pain pills, it won't kill you (his words). I told him yeah, I'll only wish I was dead. Dentist thinks it's heavy metals. Gastroenterologist thinks it's a genetic defect and IBS. My personal opinion is it's a combination of all of these and there is no real "cause" except our western life. I find it very interesting that we are the first generation (baby boomers) to truly develop this disease or syndrome in any numbers. I think it's from a lifetime of exposure to a multitude of toxins that simply didn't exist before 1950 or so. My 58 year old boyfriend has the same types of problems. I also think that other problems like diabetes, high cholesterol, obesity and high blood pressure are all pieces of the same puzzle. I think a diagnosis makes it too easy for doctors to treat the symptoms and not the patient.
Are we missing any important questions: I would like to see statistics of other cultures with fibro. Also, maybe expand your questionnaire to include questions about other chronic illnesses that fibro patients have developed.
03/10/2009
First Name: Jennifer
Age: 33
Male or Female: female
City: Haslett
State/Province: Michigan
Country: USA
How long have you lived there: 33
Where were you born: Lansing
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: It's affected me because I never know when my symptoms will flare and most all of the time I'm in great pain or tired and my brain fog causes me to be very forgetful and I am sure it would hinder my ability to be successful in any job setting.
How has Fibro affected your life: I feel like it's turned my world upside down. I feel like a different person. Depression sets in knowing that you can try hard to control symptoms but you don't know if you'll ever function normally. I feel like less of a mother and wife although I try hard to be what I once was.
What were your first symptoms: After a car accident I had pain that started in my neck and went down my back.
Your age at onset of symptoms: 29
How fast was your rate of decline: I would say moderately..not to slow nor fast. Just got worse and new symptoms developed over time.
What are your current symptoms: Over all body pain, fatigue, brain fog(memory issues,confusion), Trouble sleeping at night,restless leg, anxiety, depression..probably more I have forgotten.
Number of years since you developed symptoms of fibromyalgia: 4-5yrs
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 2-3yrs
Describe the extent of your brain fog: I forget things easily. Have trouble remembering specifics details seconds after being told something.
Estimate number of doctors you have seen for Fibro related symptoms: 2
Do your doctors tend to focus on all your Fibro symptoms: I see a rheumatologist and he rules out other factors of illness before treating my symptoms relating to fibromyalgia.
Do your doctors treat your symptoms individually or collectively: After ruling out other factors my doctor treats them somewhat individually.
Describe your experience with doctors: I am thankful for some relief of my pain but it's very exhausting to continually have to go to the doctors. I wouldn't say I've had a bad experience but I feel like it's never going to end.
What remedies or medications have you tried: Physical therapy, water therapy, Heat, Ultram,wellbutrin,buspar,zanaflex,soma,xanax,skelastin?,alot others I cant remember all the names now.I also take vitamin c, d, calcium and iron since it was too low.
What makes you feel better: The meds I'm on makes my pain bearable but does not take it away, hot baths, heating pad
What makes you feel worse: When I try to do too much such as cleaning, playing with my kids outdoors and simply any physical activities that are overdone and it doesn't take much. Knowing I am limited on what I can do frustrates me to no end.
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 had my thyroid tested but had no feedback on it so I assumed it was fine. So I would say No.
Your theories or comments: I believe all my symptoms of fibromyalgia and those stemming from it was triggered from my car accident. I have researched fibromyalgia and is part of the reason I am on this site now. I have no answers and I am looking in every direction I can at this point. I just wanted to give a little input and hopefully help others have an understanding of what it's like. This a painful and mentally exhausting illness to have because of the fact that you look like a normal person without the pain showing on the outside and that's hard for people to understand.
Are we missing any important questions: Ask people how they believe their fibromyalgia was brought about.
03/10/2009
First Name: Teresa
Age: 52
Male or Female: female
City: london
State/Province: Ontario
Country: canada
How long have you lived there: 52
Where were you born: canada
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: customer service representive, cashiering, stocking heavy cases, repetitive lifting
How has Fibro affected your ability to work: brain fog, sore and stiff muscles, headaches, troubles with vision
How has Fibro affected your life: controls what I do, when I do it and basically caused years of pain
What were your first symptoms: shoulder injury that did not seem to get better with time
Your age at onset of symptoms: 39
How fast was your rate of decline:
What are your current symptoms: brain fog, numbness in shoulders/arms/hands. Headaches, tiredness and pain in muscles everyday, all day
Number of years since you developed symptoms of fibromyalgia: 11
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 11
Describe the extent of your brain fog: sometimes cannot read or understand what I'm reading, forgetful, have trouble completing sentences, almost as if I'm intoxicated at times
Estimate number of doctors you have seen for Fibro related symptoms: 11
Do your doctors tend to focus on all your Fibro symptoms:
Do your doctors treat your symptoms individually or collectively: collectively,
Describe your experience with doctors: Doctors rarely understand the symptons
What remedies or medications have you tried: muscle relaxers, general painkillers
What makes you feel better: exercise
What makes you feel worse: laying around
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: no dairy, no white flour or sugar mostly eat fruit and vegetables
Have you tried any thyroid specific treatments: no
Your theories or comments: Exercise is of great importance especially when you are having a fibro attack. Eat no beef, pork or processed meats. No dairy, sugar or white flour.
Are we missing any important questions:
03/09/2009
First Name: Donna K.
Age: 51
Male or Female: female
City: Smyrna
State/Province: Tn
Country: Rutherford
How long have you lived there: 30 years
Where were you born: Middle Tennessee
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: sit down job on computer all day
How has Fibro affected your ability to work: Yes
How has Fibro affected your life: Concentration, pain, fatigue
What were your first symptoms: pain and severe fatigue, depression
Your age at onset of symptoms: probably about 40
How fast was your rate of decline: gradual
What are your current symptoms: Pain, fatigue, difficulty sleeping, difficult concentration depression
Number of years since you developed symptoms of fibromyalgia: 10+
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 2-3
Describe the extent of your brain fog: difficulty staying on task, can't retrieve words at times.
Estimate number of doctors you have seen for Fibro related symptoms: 3
Do your doctors tend to focus on all your Fibro symptoms: not really
Do your doctors treat your symptoms individually or collectively: individually by different MD's
Describe your experience with doctors: difficulty getting diagnosis; difficulty finding treatment that works. Staying with MD's that do help due to insurance changes or MD moving
What remedies or medications have you tried: NSAIDS; tylenol, effexor, provigil, cymbalta, elavil, ambien, sonata, benedryl, tramadol
What makes you feel better: tramadol, cymbalta
What makes you feel worse: elavil, effexor,
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 because my thyroid is always normal when tested
Your theories or comments: I find people don't take this seriously. Some people don't want to make it better and want to be disabled.
Are we missing any important questions: no
03/08/2009
First Name: Colleen
Age: 43
Male or Female: female
City: Indpls.
State/Province: In.
Country: u.s.a.
How long have you lived there: 39 yrs.
Where were you born: Key West, Fl.
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: Cleaning
How has Fibro affected your ability to work: I can't do as much, some days I am much slower than other's. Have to have a lighter schedule. I would like to be able to do more, but need rest more often.
How has Fibro affected your life: I can't or don't participate in as many family activities. I have gained weight due to the lack of energy and pain. Which the extra weight only makes worse I'm sure.
What were your first symptoms: zig zag pain across body, every day new pain in a new place. memory confusion, spacey, concentration was bad
Your age at onset of symptoms: 39
How fast was your rate of decline: Worse now than, back then. but still do what I have to do, to work, and to run my house. I was in denial for yrs. As the pain increases, the more I want to figure out what to do about it
What are your current symptoms: zig zag pain still, new spots from day to day. Have absolutely horrible foot pain now for 2 yrs. receive cortisone shots in feet
Number of years since you developed symptoms of fibromyalgia: looking back I think I have had longer, than initially diagnosed 4 yrs. ago
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 5
Describe the extent of your brain fog: some days worse than others, have trouble expressing words. Like my brain is thinking faster than my mouth. Lack of concentration. Spacey, going from one thing to another quickly in my head. racing thoughts
Estimate number of doctors you have seen for Fibro related symptoms: 3
Do your doctors tend to focus on all your Fibro symptoms: yes
Do your doctors treat your symptoms individually or collectively: individually most of the time
Describe your experience with doctors: pretty receptive, but trying to cure all the ails individually, high cholesterol, thyroid, diet, pain meds. etc.
What remedies or medications have you tried: exercise and stretching, lyrica, tramadol, tylenol
What makes you feel better: sometimes nothing, or resting...sleep, other times everything helps
What makes you feel worse: Stress, loud noises, loud voices happy or sad,
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, right now I'm eating healthier then before, and seem to be not as lethargic
Have you tried any thyroid specific treatments: synthroid
Your theories or comments: as in anything, I do believe a healthier body would help the situation. Diet and exercise are key to a lot of thing's. Especially with some of the other things I experience, weight gain, high blood sugar, less weight on the feet, maybe would hurt less, it goes on and on
Are we missing any important questions: can't think of any
03/07/2009
First Name: Rebecca
Age: 56
Male or Female: female
City: Sunmmerville
State/Province: south carolina
Country: US
How long have you lived there: 56yrs
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: yes
What is Your Line of Work: Delivery
How has Fibro affected your ability to work: yes
How has Fibro affected your life: I used to live in a state of semi panic until I realized the symptoms come and go and are not going to kill me just annoy me and disrupt my life on occasion
What were your first symptoms: Pain numbness and knots in my mucles mostly in the shoulder area
Your age at onset of symptoms: 25
How fast was your rate of decline: slow until menopause
What are your current symptoms: I have them all
Number of years since you developed symptoms of fibromyalgia: 31
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 3
Describe the extent of your brain fog: starting to worry me. I make notes, stick to routines
Estimate number of doctors you have seen for Fibro related symptoms: 1
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: He told me what it was, what to expect
What remedies or medications have you tried: Advil for pain and hot showers
What makes you feel better: Advil and hot showers
What makes you feel worse: The cold weather
Have you tried avoiding fluoride in your diet: yes
If so, which sources of fluoride: tap water
Have you made dietary changes to avoid any other neutrotoxins: As little additives and preservatives as possible
Have you tried any thyroid specific treatments: no
Your theories or comments: It is sad that people still think that this condition is all in your head or just a name for something they can't explain.
Are we missing any important questions: Family history
03/07/2009
First Name: Eileen
Age: 57
Male or Female: F
City: Bath
State/Province: NY
Country: USA
How long have you lived there: 6 mos
Where were you born: Elmira, NY
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: Restaurant management
How has Fibro affected your ability to work: unable to stand, sit for long lengths of time- unable to perform mental tasks
How has Fibro affected your life: No one understands the pain and dibilitatig effects and the whole thing has somewhat depressed me
What were your first symptoms: pain, no energy, depression
Your age at onset of symptoms: 49
How fast was your rate of decline: 1 yr
What are your current symptoms: Pain, lethargy, muscle weakness, depression, insomnia
Number of years since you developed symptoms of fibromyalgia: 8
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 8
Describe the extent of your brain fog: takes 3 or 4 hours after waking to think clear most days, some days it lasts all day. Hard to get motivated, dizzy, disoriented and general malaisse
Estimate number of doctors you have seen for Fibro related symptoms: 3
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: only prescribe medications that don't work and don't seem to truly understand- think the problem is psychiatric
What remedies or medications have you tried: anti-depresants Pain medications chiropractic massage diet
What makes you feel better: chiropractic massage diet
What makes you feel worse: pain medications anti-depressants
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:
03/07/2009
First Name: Liz
Age: 48
Male or Female: Female
City: Harvest
State/Province: AL
Country: USA
How long have you lived there: 1 year
Where were you born: NY
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: yes, just started
What is Your Line of Work: Software Development
How has Fibro affected your ability to work: I had to quit my old job. I was required to work extended hours on occasion and my health went down hill to the point where I just couldn't deal with working. In the past 4 years I was lucky that I could stay home and was able to get a degree online. I recently began a new full time career and I have had some serious concerns about whether or not I can do this. All I can do is try.
How has Fibro affected your life: Where do I begin?? When it is at it's worst I think I'd be better off dead. When I feel my best I am grateful. Most of the time I just try my best to manage it with meds and lifestyle and do my best to have a positive attitude. I pray a lot. My family has had to settle for a mom/wife that cannot always do all the things that other moms/wives can do. We don't socialize much and our house is usually a mess.
What were your first symptoms: Headaches, muscle discomfort, fatigue, strange skin sensations
Your age at onset of symptoms: around 30
How fast was your rate of decline: From about age 30 to age 35 the decline was very gradual. At 37 I had a child and after that the decline was much worse until now at age 48.
What are your current symptoms: Insomnia, muscle pain, all-over discomfort, irregular heart rythm, joint pain, fatigue, viral flares (HVP 1 & 2, EBV), Discoid Lupus (scalp and forhead lesions)spinal pain, frequent headaches, frequent hemiparisis (left side)with pain, brain fog, digestive problems (H. Pylori infection, problems with yeast, stomach lining inflammation), possible gall bladder problems (but no stones) minor gynocalogical problems.
Number of years since you developed symptoms of fibromyalgia: about 13
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: about 10
Describe the extent of your brain fog: It's difficult to determine BC I also have ADHD. SOmetimes I feel like there is a veil over my brain. Sometimes everything seems kind of surreal and I have to mentally push through the veil to function. This happens every day, but doesn't last all day. It comes and goes.
Estimate number of doctors you have seen for Fibro related symptoms: 9 or 10 in 2 differents places I have lived
Do your doctors tend to focus on all your Fibro symptoms: Only my primary care doctor tries to. The neurologists, rheumys, orthos, dermatologists, gastroenterologist, gynocologists do not.
Do your doctors treat your symptoms individually or collectively: Individually
Describe your experience with doctors: I have had 2 primary care doctors (both female) that have had a good understanding of Fibromyalgia and have taken time to listen to me. All of the specialists do not take the time to treat me as a whole person. They look at the specific symptom that I was referred to them for and that's it. I sometimes leave the office feeling stupid for having gone to see them in the first place. Especially the Rheumy. WHen my blood tests come back normal I ask him, "so why do my joints hurt so much that it wakes me up?" & he says, "I don't know, but I'm not going to make something up. Come back in year."
What remedies or medications have you tried: I take Lyrica, Tramadol, Lunesta, Citalopram, Atenolol, Prednisone, Focalin. I have seen an alternative care provider that had me taking all sorts of supplements. Other meds: Vicodin, Xanax, muscle relaxers, OTC pain and anti-inflammatories.
What makes you feel better: Warm baths, rest, stretching, meditation & prayer, pain meds.
What makes you feel worse: Stress, too much activity, not eating right, not doing the above.
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 think my problems started with untreated allergies and exposure to environmental toxins. My subsequent spinal injuries and a really bad viral infection at age 19 or 20 caused my immune system to disfunction. Years of stress and anxiety contributed. Now my endocrine system, neurvous system, digestive system are all out of whack. I am going to focus on getting my immune system stable through lifestyle habits and supplements
Are we missing any important questions: You should ask more specifically about allergies and other common symptoms. People don't always remember everything.
03/05/2009
First Name: Sally
Age: 52
Male or Female: Female
City: Basildon
State/Province: Essex
Country: UK
How long have you lived there: 4 years 6 months
Where were you born: London
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: no
What is Your Line of Work:
How has Fibro affected your ability to work: yes
How has Fibro affected your life: can barely walk, need a lot of help in all that i do
What were your first symptoms: burning tingling sensation in top of legs and chest discomfort
Your age at onset of symptoms: 36
How fast was your rate of decline: not sure
What are your current symptoms: pain all over body, IBS, mamory lapses, lack of sleep,
Number of years since you developed symptoms of fibromyalgia: seventeen
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 13 ish
Describe the extent of your brain fog: can be very dangerous like forgetting to turn cooker off after cooking, put bread on grill to toast adn forgetting i had done so, thank god for smoke detectors!
Estimate number of doctors you have seen for Fibro related symptoms: to many to count
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: try not to bother them, many far worse off than i am. i just get on with it
What remedies or medications have you tried: meloxicam, amitriptylene, co-codyamol,
What makes you feel better: taking each day easy a dn doing just what i can, not over doing things
What makes you feel worse: doing to much in one day, walking to far for too long, longer than 30 minutes
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: no
Are we missing any important questions: none
03/04/2009
First Name: Pat
Age: 57
Male or Female: Female
City: Barre
State/Province: VT
Country: USA
How long have you lived there: forever
Where were you born: Barre
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 don't miss time, but suffer from pain and fatigue
How has Fibro affected your life: I do less, no energy and much muscle and nerve pain
What were your first symptoms: neck pain and bladder pain and urgency
Your age at onset of symptoms: 45
How fast was your rate of decline: By 53 had added nerve pain in head and foot
What are your current symptoms: IC comes and goes, chronic muscle pain in neck, shoulder, back ang legs
Number of years since you developed symptoms of fibromyalgia: About 10
Do your symptoms include brain fog: minor
Number of years since you developed the brain fog: 7
Describe the extent of your brain fog: Now it is minor. I have a job that requires keeping track of numerous stuff and I think tht helps
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: GP gave me antidepressants 1st neurologist have me neurontin and topamax. 2nd one did MRI andd ruled out MS. Pain clinic gave me Lyrica and cymbalta. Also tried Occipital nerve block (didn't work)
What remedies or medications have you tried: Prozac, neurontin, topomax, cymbalta, lyrica (and ambien which made me crash my car on the way to work because after taking it for 3 weeks I went into hypnotic state and didn't remember anything half the way to work. I remember hitting a gradrail and continued to work which I didn't remember.
What makes you feel better: Summer
What makes you feel worse: Winter
Have you tried avoiding fluoride in your diet: Not yet
If so, which sources of fluoride: NA
Have you made dietary changes to avoid any other neutrotoxins: I do not eat dairy and very little red meat. I do not eat proessed foot. Low cholestral diet
Have you tried any thyroid specific treatments: No
Your theories or comments: 3 times in my life I was mistreated with large dosages of strong antibiotics. Once a doctor wanted me to take them for 2 months and I stopped a 3 weeks. She later had her license taken away. She was sure I had a sinus issue that turned out to be an allergy. I also had many antibiotics for an bladder infections before I was diagnosed with IC. I also had a bad case of flu and wss hospitalized. Lord knows what I got that time.
Are we missing any important questions: no
03/01/2009
First Name: calvin
Age: 52
Male or Female: male
City: whiteway
State/Province: newfoundland
Country: canada
How long have you lived there: lifetime
Where were you born: newfoundland
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: construction
How has Fibro affected your ability to work: Because of my condition I have had a auto axident, and afraid to drive
How has Fibro affected your life: feel usless to work, so tired, so much pain, can conctrate, wants to lie down all the time, depression, ect.
What were your first symptoms: tired, and rls, depression
Your age at onset of symptoms: 40
How fast was your rate of decline: steadly decline over 12 plus years and getting worst.
What are your current symptoms: tired, sleepy, depressed, burning in parts of the body, lower back pain, neck pain in back of head, leg and arm pain in musles, confused, etc.
Number of years since you developed symptoms of fibromyalgia: 12 plus
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: about 3 to 5
Describe the extent of your brain fog: confused, forgetfull,
Estimate number of doctors you have seen for Fibro related symptoms: Family Dr. 1, specalist 8
Do your doctors tend to focus on all your Fibro symptoms: yes
Do your doctors treat your symptoms individually or collectively: both
Describe your experience with doctors: I belive my condition has confused the doctors. They can't say for sure what it wrong.
What remedies or medications have you tried: To many medications to metioned have been tried, over and over
What makes you feel better: lately my special diet, B12 and Cymbalta drug makes me feel better.
What makes you feel worse: when I eat or drink the wrong food
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride: n/a
Have you made dietary changes to avoid any other neutrotoxins: yes
Have you tried any thyroid specific treatments: ?????
Your theories or comments: proper died will help a lot, for me the new drug Cymbalta and B12
Are we missing any important questions: yes, can we contact you by email for other information concerning your health and fibromyalgia.
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