SEARCH
Powered by Google    Web Earth Clinic

Fibromyalgia Questionnaire & Results

Latest Update: 11/19/2009 

Click here to return the latest fibromyalgia posts.

 

43 QUESTIONNAIRE COMPLETED DATA FORMS FOR January 2009

01/31/2009
First Name: Theresa
Age: 47
Male or Female: FEMALE
City: Dublin
State/Province: Ohio
Country: United States
How long have you lived there: 4 months
Where were you born: KentuckyIs this the first time you have taken our questionnaire: yes
Are you still working: No
What is Your Line of Work: Nurse
How has Fibro affected your ability to work: Greatly! Not able to perform my task
How has Fibro affected your life: I am not able to concentrate, remember, my words wont come out correctly and I would have Dr's get mad at me because they would finish my sentence. I am in constant pain, cant lift or push med cart. I feel it has robbed me of my life. In the prime of my career in 2002 I weighed 140 pounds and now am pushing close to 250!
What were your first symptoms: Severe muscle spasms and colon spasm the colon spasm was so bad I was at work, I went to the bathroom and turned the faucet on full force, put a cloth in my mouth got down on my knees and screamed and cried
Your age at onset of symptoms: 41 or 42
How fast was your rate of decline: I would say gradual since I was in denial after my 4 ventral hernia repairs in 2007/2008 very agressively!
What are your current symptoms: Dizziness, unsteady gait, frequent falls,excrutiating bone and joint pain as if my limbs are being sawed off with a knfe! RLS. Fatigue, insomnia, headaches. Constantly cold. Hands and feet numb and tingly. Both arms have a sensation where they feel wet from the elbow down. GI spasms. Neck pain, ear pain. Shooting pain thru my head.Memory loss. I know there are many I have forgotten. Oh yes, depression, anxiety, bipolar, suicidal ideations due to pain. Feeling like a burden!
Number of years since you developed symptoms of fibromyalgia: 6 or n7 years
Do your symptoms include brain fog: MOST DEFINETLY!
Number of years since you developed the brain fog: 3 years
Describe the extent of your brain fog: At times when someone is talking to me I feel as if I am in a tunnel with smoke swirling around me. Sometimes people have to repeat a simple sentence or question 3 or 4 times before I comprehend!It frustreates me which also makes it worse
Estimate number of doctors you have seen for Fibro related symptoms: 4
Do your doctors tend to focus on all your Fibro symptoms: Well, lets just say I gave up after my Primary care dr sent me to a Reumotologist and she said I didnt have fibromyalgia that I was just overweight and OBESE! If I would do something about that ALL my symptoms would go away! I have NO FAITH IN THEM AT ALL!!!
Do your doctors treat your symptoms individually or collectively: Its strange that the Reumotlogist said I was obebese but she put me on neurotin
Describe your experience with doctors: NO FAITH AT ALL!! THE REUMOTLOGIST SAID MY SYMPTOMS WOULD ALL GO AWAY IF I WOULD LOOSE WEIGHT AND I DONT HAVE FIBROMYALGIA BUT SHE PUT ME ON NEUROTIN AND GAVE ME CORTISONE INJ. IN MY LEFT HIP! i HAVE APPT. TO SEE A NEUROLOGIST IN 3 DAYS!
What remedies or medications have you tried: CRYING, NEUROTIN WHICH DOESNT HELP, ANXIETY MEDICATION--XANAX, BIPOLAR MED--LITHIUM.VICODIN WHICH HELP A WHOLE LOT BUT I HAVE TO BEG FOR IT FROM MY PRIMARY CARE DR. REST, HEAT, WHIRLPOOL WHEN I CAN GET IN AND OUT BY MYSELF
What makes you feel better: VICODIN,XANAX,HEAT,LITHIUM
What makes you feel worse: COLD WEATHER, STRESS,LACK OF SLEEP, FEELING HELPLESS
Have you tried avoiding fluoride in your diet: YES, i USE BOTTLED WATER AND HAVE WATER FILTER FOR COOKING
If so, which sources of fluoride: WATER
Have you made dietary changes to avoid any other neutrotoxins: No, regardless of weather I am obeese or not I am not a big eater. I only eat once per day so I am not too picky about what I eat since I eat very little. I also have frequent bouts of emesis
Have you tried any thyroid specific treatments: NO
Your theories or comments: I just wish I could find a Dr. who believes in me! I really feel as if I dont my life is not worth living being this miserable! I dont care if there is a high rate of being addicted to narcotic pain meds I know the rate and the ramifications since I am a Nurse I just want to function and if thats what it takes I would rather take the risk verses the benefit
Are we missing any important questions: dont think so but can you help?

 

01/30/2009
First Name: Elizabeth
Age: 29
Male or Female: Female
City: Walbridge
State/Province: Ohio
Country: USA
How long have you lived there: 6 Years
Where were you born: Oregon OhioIs this the first time you have taken our questionnaire: YES
Are you still working: NO
What is Your Line of Work: Disabled
How has Fibro affected your ability to work: YES
How has Fibro affected your life: I can not live a normal life. I have a 5 year old and struggle everyday to provide her care. I had to stop working because my spasams were so bad that I was afraid I would drop an infant. I worked as a head teacher for years and took care of Babies birth to 6 weeks. I LOVED my job. This disease has robbed me of my happiness.
What were your first symptoms: Spasams.... Tiredness. PAIN
Your age at onset of symptoms: 21
How fast was your rate of decline: After it got unbearable.. It was FAST
What are your current symptoms: Pain. Fatigue. Depression. Spasams. Anxiety
Number of years since you developed symptoms of fibromyalgia: 8 Years
Do your symptoms include brain fog: When I was on Lyrica
Number of years since you developed the brain fog: Only the 6 monts on Lyrica
Describe the extent of your brain fog: I would not be able to drive.. It was terrible
Estimate number of doctors you have seen for Fibro related symptoms: 7
Do your doctors tend to focus on all your Fibro symptoms: I have a GREAT on now.
Do your doctors treat your symptoms individually or collectively: Collectively
Describe your experience with doctors: He is Great. Understanding. Caring Etc.
What remedies or medications have you tried: Hydrocortisone Injects from Neck to Lower Back. OUCH! Worked only for a few weeks. Now Muscle Relaxers and Oxycodone. And Vitamin supplements.
What makes you feel better: Rest. Hot Tub. Massages. Chiropractic.
What makes you feel worse: Exercise. Sleep Deprivation,
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: NO
Your theories or comments: Living with this is no fun. But I go day by day. And try my hardest. And PRAY my daughter does not get this. It is no life for anyone to live.
Are we missing any important questions: NO

 

01/28/2009
First Name: Laurie
Age: 52
Male or Female: female
City: Post Falls
State/Province: ID
Country: USA
How long have you lived there: 5 years
Where were you born: IdahoIs this the first time you have taken our questionnaire: yes
Are you still working: Yes
What is Your Line of Work: Clerical
How has Fibro affected your ability to work: No
How has Fibro affected your life: quality of life not as good, depression, aches, pains, etc.
What were your first symptoms: Flu-like illness a month after giving birth. Went to bed and stayed there for 3 days. Never experienced anything like it before. Hard to describe. I complained to others that it was taking me a long time to get better.
Your age at onset of symptoms: 40
How fast was your rate of decline: Started with illness onset. Had several years that I was not able to work due to extreme fatigue.
What are your current symptoms: fatigue, muscle aches, chronic depression, some mental fuzziness, insomnia, RLS, itching
Number of years since you developed symptoms of fibromyalgia: 11
Do your symptoms include brain fog: yes - but not all the time
Number of years since you developed the brain fog: can't remember
Describe the extent of your brain fog: At times it is extreme. I can't seem to get it together/organized to get things done.
Estimate number of doctors you have seen for Fibro related symptoms: 2
Do your doctors tend to focus on all your Fibro symptoms: Not at the same time.
Do your doctors treat your symptoms individually or collectively: Individually
Describe your experience with doctors: so - so
What remedies or medications have you tried: antidepressants including Wellbutrin, Zoloft, Cymbalta, Lexapro, ibuprofen, tylenol
What makes you feel better: had luck with depression tx with Wellbutrin but it quit working about a year ago.
What makes you feel worse:
Have you tried avoiding fluoride in your diet: no - never heard of that until now
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:

 

01/28/2009
First Name: Teresa
Age: 45
Male or Female: Female
City: Toulouse
State/Province: 31
Country: France
How long have you lived there: 3 years
Where were you born: England
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: no
What is Your Line of Work: Manager of accounting dept
How has Fibro affected your ability to work: shoulder, neck back pain mean even a mins on computer very painful. Brain fog & lack of sleep made it impossible to concentrate. lost ability to do mental maths or spell made mistakes.
How has Fibro affected your life: Nothing is spur of the moment! My life revolves aroung 'pacing' my energy and pain levels,everything needs planning, I feel old and fat.
What were your first symptoms: More severe pain than usual in shoulder & start of tennis elbow, insomnia, brainfog, loss of usual energy and drive.
Your age at onset of symptoms: 40
How fast was your rate of decline: Very fast
What are your current symptoms: back, neck, shoulder, elbow pain lack of stamnia, insomnia,weight gain, depression, Occasional: lack of stamnia, insomnia, brain fog, cold hands & feet, bloating
Number of years since you developed symptoms of fibromyalgia: 5
Do your symptoms include brain fog: Yes
Number of years since you developed the brain fog: 5
Describe the extent of your brain fog: Cannot work, no motivation, cannot finish a task, forget appointments,to collect daughter from school, where car is, what I'm saying in the middle of sentance, use 'wrong' word,
Estimate number of doctors you have seen for Fibro related symptoms: 20
Do your doctors tend to focus on all your Fibro symptoms: no
Do your doctors treat your symptoms individually or collectively: individually
Describe your experience with doctors: Doctors...Don't get me started, 99% have absolutly no idea how to diagnose and treat anything, they only treat symptoms not look for the actual causes.
What remedies or medications have you tried: Chiropractic - Good Dugs in no part. order:Voltarol -rubbish, side effects Pain meds -don't work unless huge doses Paxil, Prozac, Amytripolene-weight gain T4 Levothyroid T3 Cytomel Prednisalone Vitamins & minerals D-Ribose Diet Exercise Therapy Being outdoors moving to warmer country Radiogfrequency de-nervation (neck) Botox inj (shoulder)
What makes you feel better: T3, D-Ribose, sunshine, organic food
What makes you feel worse: Cold, lack of sleep, stress, diet, wheat,gluten, cheese,
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: a little
Have you tried any thyroid specific treatments: T4, T3
Your theories or comments: I have improved only because I didn't accept that I would never get better and spent years reading, surfing. I also changed doctors until I found one who WOULD give me T3 and listen to me! I saw: Rheomatologist,x 5 gastroenterologists, Pain specialist, Orthopediac surgeon, GP, Physiotherapists, Dietitions, alternative, Chinese, irridology, massage, accupuncture. Also family medical history, most of my female relatives have similar symptoms to mine but different dx!
Are we missing any important questions: Type of doctors consulted. family medical history.

 

01/28/2009
First Name: Kit
Age: 51 years
Male or Female: female
City: Canonsburg
State/Province: Pa.
Country: USA
How long have you lived there: 51 years
Where were you born: Pittsburgh, Pa.Is this the first time you have taken our questionnaire: yes
Are you still working: no (occasionally)
What is Your Line of Work: house cleaning ( used to do new construction cleaning...own business) ...no longer can do it.
How has Fibro affected your ability to work: physically it is so hard for me to get by on a daily basis due to extreme fatigue and burning aching muscles and bone pain.
How has Fibro affected your life: Adversely in every aspect of my life.
What were your first symptoms: I had been self medicating for years but the first symptoms were flu like and I felt extremely sick...like I was going to die....couldnt even get out of bed for so long it seems. Very hard to describe.
Your age at onset of symptoms: maybe around 40??
How fast was your rate of decline: I am 51 now and I think that its hard to pinpoint because Ive had painful degenerative issues for over 20 years.After my parents died 10 years ago I noticed the fibro got really bad.Lost all my energy and hurt all over everywhere..going through menopause currently.....in fact I may be about done.Havent had a period this time for over a year.
What are your current symptoms: same as before...maybe not quite as severe...except the fatigue is much worse....havent had the flu like symptoms for awhile. Still have achy burning muscles and any physical exertion completely wipes me out.Every place hurts ON my body to touch still..extremely tender.....but it is more tolerable. Still have no sexual desires at all. Dry eyes & mouth, stiff achy joints neck especially, feet hurt and at night burning shooting pains in them. Weight gain, terrible bloating w/ shortness of breath, sleepless nights or waking up many times during the night,
Number of years since you developed symptoms of fibromyalgia: maybe 10, or a little less.
Do your symptoms include brain fog: yes!! all the time...right now...
Number of years since you developed the brain fog: as long as I can remember??
Describe the extent of your brain fog: Now I completely forget everything I was doing sometimes....cant focus to remember things. Even night driving is hard. Cant stay awake long enough to drive any long distance.
Estimate number of doctors you have seen for Fibro related symptoms: over 10+
Do your doctors tend to focus on all your Fibro symptoms: they used to, yes....if I asked them to...if I remembered
Do your doctors treat your symptoms individually or collectively: both. Ive been put on Cymbalta for pain, and also Pamelor to assist in sleep and its supposed to back up the Cymbalta.
Describe your experience with doctors: never good. They all thought I was a hypochondriac.I even felt like I was at times and that I must be going crazy. One of the last docs I went to was a rheumy. They said I had FM and began to treat it. Many years later Ive found what I think may work okay but am still searching for that miracle cure. If I only had a bit more energy...
What remedies or medications have you tried: Tramadol,Ultram, Vicodin, Soma, Flexeril, Trazadone,a whole host of other more natural remedies...I really cant remember all of them. I take VitD3 w/ Vit A , and a liquid calcium & magnesium & do more herbal things today....but also take Cymbalta 60 mg every morning and then an Excedrin.Accupunture, guafinesin,tanning salons, magnesium, enzymes & fiber...vitamins...etc...greens...
What makes you feel better: Cymbalta....and maybe then an Excedrin so I can gain a teeny bit of energy, laying down makes me feel the best & not moving, getting a lot of sleep
What makes you feel worse: overdoing anything...to much of anything strenuous....working any muscles to any degree at all.
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: just try not to drink my regular tapwater....had put 2 filters on under my sink w/ a drinking fountain attached so we wouldnt have to drink straight tap water.
Have you tried any thyroid specific treatments: No.
Your theories or comments: My gut feeling on this terrible illness is that its a multitude of things...not one in particular. I had a live blood cell analysis and I was deficient in Vit B12, had many yeast markers and inflammation everywhere. I had been taking a large does of sublingual Vit B12 prior... so this made me wonder if in fact it is very related to a digestive problem. I am so bloated everyday that it is hard to bend over, and move about without much discomfort. I have diarrhea terrible at least once a week, but have always had digestive problems since I was very young.
Are we missing any important questions: I am sure I mtself have forgotten many important things to mention... Im sorry if so but hope this helps.... anything to help rid FM in the world!

 

01/27/2009
First Name: Ann
Age: 54
Male or Female: Female
City: Bethel
State/Province: Minnesota
Country: USA
How long have you lived there: 19 years
Where were you born: MinneapolisIs this the first time you have taken our questionnaire: yes
Are you still working: yes
What is Your Line of Work: Independent Contract Carrier
How has Fibro affected your ability to work: It is really hard to deliver papers, because of the joint pain, stiffness, etc.
How has Fibro affected your life: I'm miserable and in constant pain.
What were your first symptoms: Joint stiffness and constant pain
Your age at onset of symptoms: 30
How fast was your rate of decline: Very fast
What are your current symptoms: Joint stiffness, pain in my body
Number of years since you developed symptoms of fibromyalgia: 24 yrs.
Do your symptoms include brain fog: Sometimes
Number of years since you developed the brain fog: 5
Describe the extent of your brain fog: Not remembering what I'm doing or where I am
Estimate number of doctors you have seen for Fibro related symptoms: 2
Do your doctors tend to focus on all your Fibro symptoms: I don't know
Do your doctors treat your symptoms individually or collectively: I don't know
Describe your experience with doctors: I have no complaints
What remedies or medications have you tried: Don't remember
What makes you feel better: Sitting in the bathtub full of hot water
What makes you feel worse: Sitting for a long time, laying down and sleeping
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: no
Have you tried any thyroid specific treatments: no
Your theories or comments: I want this pain to go away and since I have no health insurance because of the company that supplies it, I'm vulnerable right now.
Are we missing any important questions: Not that I know of.

 

01/25/2009
First Name: Abby
Age: 24
Male or Female: female
City: suburban Detroit
State/Province: Michigan
Country: USA
How long have you lived there: 24 years
Where were you born: suburban Detroit
Is this the first time you have taken our questionnaire: yes
Are you still working: yes
What is Your Line of Work: Department supervisor of a living history museum.
How has Fibro affected your ability to work: I've had to cut back hours and work shorter days when having flairs or overwhelming fatigue. The job is often very stressful, causing symptoms to flair up, leading me to often not do my work to what I know is my full potential. The common "brain fog" frequently hits me and I find that there are times I cannot complete assignments unless I write down every step because I know that at some point, my mind will become too foggy to remember exactly what I was supposed to do.
How has Fibro affected your life: The extreme joint and muscular pain, fatigue, and mental foggyness have taken away from my life in a major way. Diagnosed just shy of 19, I was never able to have a "true" college experience as I strugled to have the energy to make it through my classes and my homework. After my college graduation, I suffered a series of severe flairs that left me unable to work for nearly 8 weeks. I was forced to rely on my family for everything, as if I was a child again. Many days, I couldn't get out of bed and still suffer from such feelings. Sympathetic physicians who truly believe they can help me have given me a better life, but still is a life that is lacking--I'm struggling to find the energy to finish the final classes needed for my master's degree, muscle and joint pain has greatly dampered my ability to exercise and stretch, and the fatigue and the brain fog have essentially eliminated much of my social life. I don't have the energy to go out after work and I'm frequently forgetting details--names of people I've known for years, birthdays, addresses, etc.
What were your first symptoms: Unexplainable pain at certain muscule and joint points in my body as well as extreme fatigue.
Your age at onset of symptoms: 18
How fast was your rate of decline: Rapidly for a few months (appx. 3) and then plateuing for a continued time.
What are your current symptoms: Fatigue, brain fog, muscle/joint pains, IBS, non-refreshing sleep
Number of years since you developed symptoms of fibromyalgia: almost 6 years--symptoms began appearing just prior to 19th birthday.
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 4
Describe the extent of your brain fog: It has gotten substantially worse over the past 2 years or so. I find myself feeling confused, unable to remember what task I am supposed to be doing, having extreme difficulty remembering details
Estimate number of doctors you have seen for Fibro related symptoms: 3
Do your doctors tend to focus on all your Fibro symptoms: No, different doctors are trying to treat different symptoms
Do your doctors treat your symptoms individually or collectively: My current doctor is working on a whole body approach to improve my general quality of life.
Describe your experience with doctors: The first 2 doctors I saw were quick to just give me a diagnosis and offer little more then that and seemed to think many of the symptoms were in my head. My current doctor encourages my input on what needs to be focused on in terms of treatment and how my daily activities are being impacted.
What remedies or medications have you tried: Antidepressants, NSAID pain relievers, anti-anxiety medication, sedatives to help with sleep, light exercise with bursts of more vigours exercise, yoga, meditation, shorter work days, diet modification
What makes you feel better: While most likely not related, modifying my diet to eat a far more balanced and greater range of foods led to an increased feeling of well being, as did limiting or eliminating foods with any partially hydrogenated oils or high fructose corn syrup in them.
What makes you feel worse: stress, rapid temperature changes, certain foods--especially highly processed foods, changes in routine, additional health challenges like colds, flu, allergies, etc.
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 made conscience efforts to eat as much organic, hormone free, antibiotic free food as possible
Have you tried any thyroid specific treatments: No
Your theories or comments:
Are we missing any important questions:

 

01/25/2009
First Name: Marie
Age: 52
Male or Female: female
City: Blue Anchor
State/Province: NJ
Country: USA
How long have you lived there: 25 years
Where were you born: Pennsylvania
Is this the first time you have taken our questionnaire: yes
Are you still working: no
What is Your Line of Work: retirement community administrator
How has Fibro affected your ability to work: extreme fatigue, foggy brain and just so sore all the time. i felt my thinking ability had declined so much i was unable to do my job.
How has Fibro affected your life: i was diagnosed in my 30's and feel like i am ninety. i often feel depressed and i don't make plans because i never know how i will feel.
What were your first symptoms: extreme fatigue, pain in shoulders, neck and arms....severe joint pain in knees, elbows and hands
Your age at onset of symptoms: 32
How fast was your rate of decline: for approx 2 years i was nearly bed ridden... it did improve to a somewhat normal life til about 5 years ago, and it is pretty debilitating now
What are your current symptoms: extreme joint and muscle pain pretty much everywhere, can't sleep, extreme fatigue, memory problems and depression
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: 10 years
Describe the extent of your brain fog: have difficulty some days doing basic math, can't remember phone numbers or addresses, names and words often escape me
Estimate number of doctors you have seen for Fibro related symptoms: 4
Do your doctors tend to focus on all your Fibro symptoms: not really
Do your doctors treat your symptoms individually or collectively: they offer steroids and plaqenil... neither will i take, so the last doctor pretty much said don't come back
Describe your experience with doctors: horrendous
What remedies or medications have you tried: i am on the apple cider vinegar pills for approx a month now, but not really seeing an improvement.
What makes you feel better: nothing really seems to help, though i wonder if its because i have other medical issues going on too
What makes you feel worse:
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride: don't think i am ingesting flouride but will look up what it is in
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:

 

01/25/2009
First Name: E.J.
Age: 35
Male or Female: Female
City: Northampton
State/Province: Northants
Country: UK
How long have you lived there: 15 yrs
Where were you born: Buckinghamshire
Is this the first time you have taken our questionnaire: yes
Are you still working: yes
What is Your Line of Work: teaching
How has Fibro affected your ability to work: I love my job and am desperate to continue to work full time, but it's an increasing struggle many days, and trouble starting now about number of sick absences when symptoms flare past coping point. I find the occasional work out of hours very difficult as this pushes me into a flare, although am able to do some of my work from home which is very helpful. Am considering whether I may have to think about going part time.
How has Fibro affected your life: was unable to sustain a pregnancy due to hormones/body chemistry being whacked, unable to stand or walk more than 15-20 minutes without a break, walking around a shopping centre etc more than an hour even with breaks sends me into a flare for days. Seriously considering using a wheelchair/motor scooter as not ready to stay home the rest of my life. Unable to maintain house or garden myself, now affecting career although have arranged life to put all available energy towards work, has severely curtailed any social life. Most free time is spent trying to re charge enough energy for work
What were your first symptoms: Migraine at 13, which I think was the starting point. The first symptoms that led to the fibro diagnosis: extreme fatigue and pain increasing from injured back/knee and spreading all over the body
Your age at onset of symptoms: 34
How fast was your rate of decline: seems to be steadily increasing speed now, have noticed a steady deterioration of function and coping over the last 12 months. Can no longer cope with vacations or long drives, or going out in the evenings.
What are your current symptoms: extreme fatigue, full body pain, frequent IBS and nausea, especially during a flare. Intermittent blurry vision and dizziness, tremor and loss of co ordination when symptoms are severe, difficulty coping with noise/sensory input. Obsessive compulsive aspects to high anxiety which is another symptom when things are bad. Anxiety tends to be uncontrolled, total over reaction to a sensible cause, or can just happen with no cause at all. Feels like adrenaline thermostat just doesn't work.
Number of years since you developed symptoms of fibromyalgia: 1
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 1
Describe the extent of your brain fog: subtle and intermittent like most symptoms. At times I'm aware my short term memory is patchy and I use a lot of support systems like lists and diaries. On a bad day, trouble getting out a coherent sentence in a phonecall, problems with word retrieval.
Estimate number of doctors you have seen for Fibro related symptoms: 4
Do your doctors tend to focus on all your Fibro symptoms: no.
Do your doctors treat your symptoms individually or collectively: Drs mostly interested in pain, very difficult to get any specific feedback on other symptoms.
Describe your experience with doctors: GP useless, not interested at all when blood tests etc kept coming back blank after I went to him repeatedly about fatigue and anxiety. About six months ago I gave him a list of all my symptoms together and told him pain was getting out of control, and he referred me to rheumatology. Rheumatologist was good, but NHS. I got a diagnosis, prescription for amytriptalene, a little advice on developing exercise and stamina and some leaflets, and told that painkillers were a last resort, and that was the end of all medical support so far. Occupational Health are now involved at work, but their role is to protect my employer from negative consequences from my illness, not to support me, and I find their involvement very stressful.
What remedies or medications have you tried: Amytriptaline, co codamol both prescribed. Tried a range of vitamins and mineral supplements, epsom salt baths, dietary changes
What makes you feel better: Epsom salt baths help, amitryptaline has improved sleep and reduced day to day pain, rest and as much sleep as I can get, making an effort to move at a steady pace and not rush at things. 10 minutes fast movement can flare me.
What makes you feel worse: Trying to push past physical limits, over doing any activity, stress, rainy weather, viral illness
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: Tried the Atkins diet. Reducing sugar helps with anxiety, but no other noticeable difference.
Have you tried any thyroid specific treatments:
Your theories or comments: WISH medics would treat the fatigue type symptoms effectively. The pain by itself is not easy but it's the simplest part to live around in many ways. The fatigue, and blurry vision/nausea/shaking is what is seriously disabling and stops me functioning.
Are we missing any important questions:

 

01/25/2009
First Name: Barbara
Age: 57
Male or Female: female
City: Plainville
State/Province: CT
Country: USA
How long have you lived there: 57 years
Where were you born: CTIs this the first time you have taken our questionnaire: yes
Are you still working: YES
What is Your Line of Work: human services/direct care
How has Fibro affected your ability to work: yes
How has Fibro affected your life: took away most things I enjoyed (exercising, wearing nice shoes, bike riding, etc)
What were your first symptoms: severe sciatica, "wobbly" legs, severe trigger point pain
Your age at onset of symptoms: 48
How fast was your rate of decline: immediate
What are your current symptoms: severe pain and stiffness, exercise intolerance, grinding teeth, depression, confusion, sleep disorder, severe fatigue
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: can't remember current things, can't process conversations or direction, explanations
Estimate number of doctors you have seen for Fibro related symptoms: 9
Do your doctors tend to focus on all your Fibro symptoms: no!
Do your doctors treat your symptoms individually or collectively: individual or not at all
Describe your experience with doctors: they are no help at all
What remedies or medications have you tried: ultram, xanax, antidepressants, herbal, vitamins, lidocaine injections, massage, acupuncture
What makes you feel better: ultram
What makes you feel worse: sitting, standing, exercising leg, arm or neck muscles, food dye
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: avoid food dye
Have you tried any thyroid specific treatments: no
Your theories or comments: with research and proper testing of people with FMS, there will be a successful treatment some day.
Are we missing any important questions: NO

 

01/22/2009
First Name: Donna
Age: 61
Male or Female: Female
City: Gardners
State/Province: PA
Country: USA
How long have you lived there: 3 years
Where were you born: Carlisle, PA
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: Accountant
How has Fibro affected your ability to work: Fatigue level high, If I work regular job with regular hours, I get really sick and muscle and joint pain increases.
How has Fibro affected your life: No longer able to participate in many social activities. Housework is extremely difficult. Relations with my husband are nonexistent, but he is very supportive of me and helps me when I have "down" days. I retired early because of my health, so funds are limited
What were your first symptoms: Hard to tell since I think I had it years before it was finally diagnosed; muscle and joint pain, aches, fatigue, brain fog
Your age at onset of symptoms: late teens, early twenties--- not diagnosed until fifties
How fast was your rate of decline: slowly until fifties, then significantly faster
What are your current symptoms: muscle, tendon, ligament, joint pain, fatigue, brain fog, inflamation of various areas, lumps in legs, arms, belly areas(in lymphatic and adrenal areas especially)
Number of years since you developed symptoms of fibromyalgia: @10 years since diagnosed
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: @ 48
Describe the extent of your brain fog: confusion, disorientation, inability to concentrate and remember. I think "backwards", i.e. I think and do things the opposite of what I want to do. Sometimes, I say the wrong word, usually the opposite of what I wanted. Now I have begun transposing numbers (never did before)
Estimate number of doctors you have seen for Fibro related symptoms: 15-20
Do your doctors tend to focus on all your Fibro symptoms: some dismissed the symptoms entirely, present doctors treat some symptoms lightly, while they treat expected symptoms seriously
Do your doctors treat your symptoms individually or collectively: collectively; however, some of the symptoms are unusual and are looked at as something different and treated as such until they realize it is another fibromyalgia symptom
Describe your experience with doctors: At first, they considered me a hypochondriac, it was all in my head! Most doctors didn't recognize fibromyalgia as a disease. As technology progressed, more doctors recognized it, but it wasn't until after numerous tests came back negative and rhematoid arthritis medicines didn't help that my rheumatologist finally realized I had it.
What remedies or medications have you tried: anti-inflamatory drugs, lyrica, mobic, supplements, nutrients, massage, aquatic exercise, pain pills
What makes you feel better: massage, aquatic exercise, lyrica
What makes you feel worse: being in the same position for too long, walking too much, exercising too much
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: eat heart healthy, not sure what you mean by neurotoxins
Have you tried any thyroid specific treatments: synthroid daily since 1981
Your theories or comments: my massage therapist has "magic hands". I spend 1 1/2 hours a week in her care and without it I am completely miserable. Yet my doctors have not wanted to discuss my case with her and work with her to help me. They are in agreement that massage helps, but I feel they fail to recognize her importance in the doctor/patient links. I was under tremendous stress most of my life and I feel I would not have progressed to this level if I had been able to avoid some of it.
Are we missing any important questions: I know there are some things I have forgotten, but can't remember what they are.....and that's a symptom!

 

01/21/2009
First Name: Dolly
Age: 44
Male or Female: Female
City: Alexandria
State/Province: Virginia
Country: USA
How long have you lived there: 44 Years
Where were you born: Alexandria, Virginia
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 Secretary (w/traveling)
How has Fibro affected your ability to work: Yes, especially my typing and thinking function. I have to transcribe tapes and hard for me to focus and type.
How has Fibro affected your life: Terribly, i use to love to go out and dance, now I stay in and sleep.
What were your first symptoms: Ache all over (like the flu), always felt tired, chest pain, anxiety, headaches
Your age at onset of symptoms: 37
How fast was your rate of decline: gradual
What are your current symptoms: back, neck aches all the time, weakness in legs, headache all the time, dizziness, feels like head in a vice, anxiety, deep chest pains, feel like I'm going to fall down alot, unable to concentrate anymore, always feel in a fog
Number of years since you developed symptoms of fibromyalgia: 7
Do your symptoms include brain fog: YES
Number of years since you developed the brain fog: 2 years
Describe the extent of your brain fog: Terrible, can't concentrate, get really dizzy, things get twisted, hard time saying what I want to say.
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: not a good one, think no one still understands this disease or knows how to really treat it.
What remedies or medications have you tried: muscle relaxers, sleeping medicines, antidepressents, pain killers
What makes you feel better: just laying in bed crying
What makes you feel worse: cold weather, stress,
Have you tried avoiding fluoride in your diet: No
If so, which sources of fluoride: wather, toothpaste not really familiar with flouride products
Have you made dietary changes to avoid any other neutrotoxins: yes, no help, I even stopped smoking and I feel worse.
Have you tried any thyroid specific treatments: no
Your theories or comments: PLEASE HELP.....I was so active and now I'm 44 and have no energy.
Are we missing any important questions: No.

 

01/21/2009
First Name: Bernadette
Age: 30
Male or Female: Female
City: Dublin
State/Province: Ireland
Country: Dublin
How long have you lived there: 30 years
Where were you born: Kerry
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
How has Fibro affected your ability to work: Yes
How has Fibro affected your life: tired, irritability, exhaustion, stress sadness
What were your first symptoms: pain in lower back, face, headaches
Your age at onset of symptoms: 22, 23,23
How fast was your rate of decline: very
What are your current symptoms: chronic pain, tiredness
Number of years since you developed symptoms of fibromyalgia: 8
Do your symptoms include brain fog: No
Number of years since you developed the brain fog: 0
Describe the extent of your brain fog: none
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: collectively
Describe your experience with doctors: some listen others don't. non curable, will have this for the rest of your life,
What remedies or medications have you tried: medication, alternative therapies,
What makes you feel better: sleep
What makes you feel worse: very busy day
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: sick of feeling sick
Are we missing any important questions: no

 

01/20/2009
First Name: PEGGY
Age: 53
Male or Female: FEMALE
City: CASTLEWOOD
State/Province: VA
Country: RUSSELL
How long have you lived there: 40 YEARS
Where were you born: RUSSELL CO VA
Is this the first time you have taken our questionnaire: YES
Are you still working: NO
What is Your Line of Work: MY LINE WAS WORKING AT A DETOX
How has Fibro affected your ability to work: i CAN NOT WORK BECAUSE OF CHRONIC FATIGUE PAIN AND SORENESS ALL OVER
How has Fibro affected your life: IT HAS A VERY BAD AFFECT ON MY EVERDAY LIFE
What were your first symptoms: TENDERNESS PAIN SWELLING
Your age at onset of symptoms: 30
How fast was your rate of decline: SLOW AT FIRST THEN GOT REALLY BAD
What are your current symptoms: CHRONIC FATIGUE SORENESS PAIN
Number of years since you developed symptoms of fibromyalgia: 15
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: 15
Do your doctors tend to focus on all your Fibro symptoms: NO NOT REALLY
Do your doctors treat your symptoms individually or collectively: NOT MUCH AT ALL
Describe your experience with doctors: NOT VERY GOOD
What remedies or medications have you tried: ANTIDEPRESSIANT ANTI INFLAMATORY
What makes you feel better: NOTHING REALLY
What makes you feel worse: 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: NO
Have you tried any thyroid specific treatments: NO
Your theories or comments: THERE IS NO HOPE FOR THIS BAD STUFF
Are we missing any important questions: NO

 

01/19/2009
First Name: erika
Age: 37
Male or Female: female
City: auburn
State/Province: maine
Country: usa
How long have you lived there: 37 yrs
Where were you born: maine
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: I cannot- I have chronic tendonitus in my upper extremities shoulder on down as well as bilateral carpal tunnel
How has Fibro affected your life: Changed me from a happy productive healthy woman to a 30 year old with a body of a 70 year old.
What were your first symptoms: painful feet in the morning
Your age at onset of symptoms: 28ish
How fast was your rate of decline: 2 years
What are your current symptoms: IBS, chronic fatigue, chronic pain, carpal tunnel, tendonitus ALL OVER,medication sensetivity
Number of years since you developed symptoms of fibromyalgia: 10ish
Do your symptoms include brain fog: I'm not sure if it does or not
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: 7
Do your doctors tend to focus on all your Fibro symptoms: pretty much
Do your doctors treat your symptoms individually or collectively: individually
Describe your experience with doctors: it's just constant maintenence nothing gets better just plugs along
What remedies or medications have you tried: amitryptlene, zoloft, prozac, neurontin, lodine, zanaflex,cymbalta, tramadol
What makes you feel better: cymbalta use to but not anymore-amitryptlene worked but I gained 60 lbs in 3 months
What makes you feel worse: cold temps
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:

 

01/18/2009
First Name: laura
Age: 48
Male or Female: f
City: elgin
State/Province: or
Country: usa
How long have you lived there: 4 yrs
Where were you born: oregon
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: vocational trainer for dd clients
How has Fibro affected your ability to work: at times
How has Fibro affected your life: yes
What were your first symptoms: soreness and tenderness
Your age at onset of symptoms: 14
How fast was your rate of decline:
What are your current symptoms: mucle soreness and tenderness nodules around ribs poor sleep depression
Number of years since you developed symptoms of fibromyalgia: 34
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 20+
Describe the extent of your brain fog:
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: individually
Describe your experience with doctors: it's all in your head
What remedies or medications have you tried: lots of pain meds now on tramadol anti inflammatories. anti depressants don't work well neither do sleep aids
What makes you feel better: tramadol and sulindac have helped alot
What makes you feel worse: everything at times
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 they always say my thyroid is fine
Your theories or comments:
Are we missing any important questions:

 

01/18/2009
First Name: PEGGY
Age: 49
Male or Female: FEMALE
City: LAKE WORTH
State/Province: FL
Country: US
How long have you lived there: 36 YEARS
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: NO
What is Your Line of Work: STATE OF FLORIDA/ECONOMIC SERVICES
How has Fibro affected your ability to work: DISABLED FOR 2 YEARS
How has Fibro affected your life: I HAVE BEEN SICK FOR THE LAST 16 YRS.
What were your first symptoms: MY PAIN DIDN'T START TILL ABOUT 3 OR 4 YRS AGO. BUT I STARTED GETTING SICK ABOUT 16 YRS AGO.
Your age at onset of symptoms: APPROX 32 YRS OLD
How fast was your rate of decline: AFTER I STARTED PROZAC I WAS SICK ALL OF THE TIME AND PUT ON MORE AND MORE MEDICATION, THE LAST 3 YEARS THE PAIN HAS BEEN GETTING WORSE AND WORSE.
What are your current symptoms: PAIN ALL OVER, IN MUSCLES, JOINTS, NECK, KNEES, HIPS, ECT, HAIR LOSS, LOST ALL LEFT SIDE OF UPPER TEETH, BONE SPURS, SWEATING, UNABLE TO SLEEP, URINATING ALL DAY AND NIGHT, LUMPS ALL OVER MY BODY UNDER MY SKIN, THICK BROWN SPOTS ON BREASTS, UNDER BREASTS, STOMACH AND OTHER PLACES, UNABLE TO SAY WORDS, CAN'T THINK, GET LOST DRIVING, DIFFICULTY READING, STOMACH BLOATING AND PAIN, WEAK, NO ENGERY.
Number of years since you developed symptoms of fibromyalgia: 16 YRS AGO.
Do your symptoms include brain fog: YES
Number of years since you developed the brain fog: 16 YRS AGO, KEEPS GETTING WORSE
Describe the extent of your brain fog: DIFFICULTY READING, CAN'T CONSENTRATE, DIFFICULTY FOCUSING, GET CONFUSED, GET LOST DRIVING, CAN'T SAY WORDS, SHORT TERM MEMORY LOSS, FORGET WHAT I AM DOING.
Estimate number of doctors you have seen for Fibro related symptoms: APPROX 15
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: NONE OF THEM COULD TELL ME WHY I KEEP GETING SICK ALL OF THE TIME. I FELT LIKE THEY BLAME ME, FOR ALL OF MY ILLNESS. ALL THEY EVER DID WAS KEEPING PUTTING ME ON MORE AND MORE MEDICATION. I FINALLY ENDED UP ON METHADONE.
What remedies or medications have you tried: WENT TO A HEALT CENTER HIPPOCTITIES. I STOPPED ALL PHARM MEDICATION, THEY WERE JUST GETING ME SICKER. IT TOOK MONTHS TO GET OFF METHADONE. I EAT MOSTLY ORGANIC FOODS AND DRINK DISTILLED WATER. CILRONTO AND CELERY AND CUCUMBER JUICE. ACCUPUNTURE, OXYGEN CHAMER, ALL KINDS OF VITIMINS.I TRIED LUGOLS IODINE, BUT MY STOMACH KEEPS GETTING VERY BLOATED AND PAINFUL, I THINK IT IS HELPING TAKE OUT THE FLUORIDE, BUT I HAD TO STOP. ACTIVATED CHARCOAL, BUT IT TAKES A DAYS TO HELP MY STOMACH.
What makes you feel better: NOT MUCH.
What makes you feel worse: TRYING TO DO THINGS. THE MORE I DO THE WORSE I FEEL.
Have you tried avoiding fluoride in your diet: YES, TOTALLY, NO FLUORIDE AT ALL
If so, which sources of fluoride: STOPPED EVERYTHING, THAT I KNOW HAS FLUORIDE IN IT.
Have you made dietary changes to avoid any other neutrotoxins: YES, I EAT MOST ALL ORGANIC FOODS. I ONLY DRINK DISTILLED WATER. DRINK GREEN JUICES TO DETOX. STOPPED ALL PHARM MEDICATONS.
Have you tried any thyroid specific treatments: I HAVE BEEN TRYING LUGOLS IODINE, BUT MY STOMACH KEEP SWELLING UP AND PAINFUL THAN I HAVE TO TAKE ACTIVATED CHARCOAL FOR DAYS TO HELP. I THINK THE IODINE IS HELPING TAKE OUT THE FLUORIDE, BUT IS LEAKING INTO MY STOMACH OR SOMETHING ELSE.
Your theories or comments: I THINK PROZAC CAUSED ALL OF MY ILLNESS, OVER THE YEARS. PLUS ALL OF THE OTHER MEDICATIONS THEY PUT ME ON. MOST OF THEM HAD SODIUM FLUORIDE IN THEM. I THINK WOMEN GET FIBO MORE BECAUSE WE GO TO THE DOCTORS MORE AND TAKE MORE MEDICATIONS THAN MEN. ALSO MOST WOMEN TAKE BIRTH CONTOL PILLS (SODIUM FLUORIDE) FOR YEARS. WOMEN ALSO TAKE BATHS (FLUORIDE THUR THE SKIN) MORE THAN MEN. ALSO ALL OF THE COSMETICS, LOTIONS, HAIR DYES, ECTS MORE THAN MEN. I THINK ALUMINUM AND FLUORIDE IS THE SAME THING.
Are we missing any important questions: MAYBE A LIST OF PHARM MEDICATIONS AND OVER THE COUNTER MEDICATIONS THAT WERE TAKEN.

 

01/16/2009
First Name: Elaine
Age: 42
Male or Female: female
City: Port Orchard
State/Province: WA
Country: USA
How long have you lived there: All my life
Where were you born: Tacoma, WA
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: no
What is Your Line of Work: I was doing in-home day care when I first developed FM I had to stop that because of the pain. Then a few years later I tried to get back into work. I did retail for about 3 years then that too I had to stop. Now I volunteer at a Senior Information Assistance a few days a week only about 3 hours in one day.
How has Fibro affected your ability to work: I can not do work where I am standing too long. or bending down on my knees really kills me. I am trying to look into a desk job as long as it is not full time. The stress of working really wears me out physically
How has Fibro affected your life: Where do I start? It affects every day of my life. I used to be a all engines ahead kind of person and I could take it, now if I don't pace myself and quite in time I REALLY pay for it later!
What were your first symptoms: Feeling like I had been beat up all night when I woke in the mornings. Going to sleep was hard because I knew I would feel worse in the morning.
Your age at onset of symptoms: about 29
How fast was your rate of decline: It had seemed to get worse as the years went on after I developed it. But when I started to listen to my body tell me what triggered more problems I have gotten a lot better.
What are your current symptoms: Morning stiffness and pain IBS inflamation chemical sensitivites carpel tunnel thyroid condition dental distress disorder anxiety, depression confusion/ brainfog S.A.D. (seasonal affective disorder) Vitamin D defitionate touch sensitive ( some simple touches affect me with pain. Some stressful situations bring physical pain Extreme sensitivity in the morning to light and sounds. I don't feel good to go until a few hours after I wake up.
Number of years since you developed symptoms of fibromyalgia: since 1997
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: about 6 months after car accidents that brought on the FM
Describe the extent of your brain fog: Some times I forget where I am going for a few seconds to about 30 seconds when driving. I have a hard time with names unless I do a word association with it. Trying to get words out, or a thought I have in my head at times is very hard. I find myself using silly names for things so I can get the thought out of my head I am trying to voice.Humor helps a lot!
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 rarely but usually individually
Describe your experience with doctors: I get more help and understanding from my naturopath, Chiropractor and Massage therapist. If I just did what my MD suggested I would be on all kinds of drugs. I use pain pills sparingly but keep them on hand for my flare ups. The main thing for me is to be careful what I eat. Staying away from all the bad stuff, processed and preservatives etc. The other thing is to guard from over stressing myself and knowing when to say no to things that will do me in. Its hard when you look fine on the outside to everyone and feel yuckey inside. I am tired of explaining myself to people. As far as Doctors go, I have had a few really good ones and a lot of ones who don't get it.
What remedies or medications have you tried: I took Ultram for a about 2-3 years at the beginning of my FM. It helped a lot. I weined myself off of it because of the side effects when I didn't take it much. I felt I was physically addicted to it even though my MD said I wasn't. Also I have taken many different anti-depressants all of them I HATED the side affects. I didn't feel they helped anyway. I just take an occasional klonapin maybe two a month for stressful times to prevent the pain with stress I get. I also now take maybe 5 a month of Darvoset when I am in a flare up. Other than that I just take a low does of thyrod pill, supplements/herbs. Staying away from the dirty dozen has REALLY helped me a lot. Some of the listing is: High F.Corn Suryp, hydrogenated oils, diet sweateners, artifical colors and flavors. MSG, etc....
What makes you feel better: Lots of rest, eating well, lots of natural foods. Avoiding over stressful situations. Getting my mind on other things: a good movie, talking with friends, seeing natures beauty etc.
What makes you feel worse: Going to the Big city with too much noise and people. Sitting too long in a chair, or standing too long. Sitting on the floor kills me or bending down too much. When people don't understand and I feel like I am just a lazy person and I need to just get going.
Have you tried avoiding fluoride in your diet: I have well water and only use a fluoride toothpaste.
If so, which sources of fluoride: toothpaste is all I know of
Have you made dietary changes to avoid any other neutrotoxins: I have heard that word from my naturopath. I try to eat things in there natural form. The less processed the better. When I don't I usally get a flar up and pay for it.
Have you tried any thyroid specific treatments: yes, my Nathrupaht has me on a low does thyroid
Your theories or comments: I was also diagnoised with titinous. I didnt have the ringing in the ear kind just expreme sensitivity to sound. I got help from an audiologist and wore a white noise hearing aid (it just put a white noise in my ears) It helped reset the part of the brain that has to do with flight or fight. It has been known to get messed up with whiplash like I had when I got into two car accidents that seemed to bring on my FM. Wearing the hearing aids for about 8 months seemed to reset that part in my brain and know I am not at all as sensitive as I was before. Little noises would give me exteme pain at times. I feel FMers are just people that have bodies that have been triggered to scream that they have had enough! Their bodies are just oversensitive to basically EVERYTHING. That's how I feel.My get up and go got up and went!
Are we missing any important questions: I think that FM is just one of the many conditions that can come out to show its head when a person has a tramatic event such as a car accident.

 

01/16/2009
First Name: Janice
Age: 72
Male or Female: female
City: Independence
State/Province: MO
Country: USA
How long have you lived there: 72 years
Where were you born: 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: homemaker
How has Fibro affected your ability to work: yes
How has Fibro affected your life: it has had an impact on a lot that i try to do
What were your first symptoms: some symtoms i've hd since a teenager, such as brain fog, later in my 40"s inabilty to sleep with out meds, and then an all over feeling of no enery, extreme fatigue
Your age at onset of symptoms: worse at 55
How fast was your rate of decline: Iwould say it was fast
What are your current symptoms: brain fog, restless legs, itching, extreme fatigue, joint pain, muscles spasms in upper back and neck, lack of motivation
Number of years since you developed symptoms of fibromyalgia: I experienced things as a teen ager
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: most of my life
Describe the extent of your brain fog: inabilty to concentrate, short span of attention etc
Estimate number of doctors you have seen for Fibro related symptoms: 3
Do your doctors tend to focus on all your Fibro symptoms: when i insist , but only sleep,excercise, depromedrol shots for joint pain,
Do your doctors treat your symptoms individually or collectively: individually
Describe your experience with doctors: Most don't understand. They are beginning to know it exists, but know that symptoms they don't kn ow about are thrown into the fibro catagory
What remedies or medications have you tried: prozac, effexor, trazadone, cycobezaprine, amatriptaline
What makes you feel better: trazadone&cycobenzaprine for sleep , Dr.J teitlebaum's high energy drink, Omega 3,magnesium,vitamin D, depromedrol
What makes you feel worse: eating the wrong foods
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride: But I am going to try when i find the sources of flouride
Have you made dietary changes to avoid any other neutrotoxins: avoidaspertane and other suger free products
Have you tried any thyroid specific treatments: my thyroid was shrunk by radiated iodine, and i know take thyroid meds for underavtive thyroid
Your theories or comments: I would hope that you, after compiling information, would give us info on what you have learned
Are we missing any important questions:

 

01/16/2009
First Name: Maaike
Age: 31
Male or Female: female
City: Kennesaw
State/Province: GA
Country: USA
How long have you lived there: on and off, 12 years
Where were you born: Gouda, the Netherlands
Is this the first time you have taken our questionnaire: yes
If not, why are you returning: n/a
Are you still working: no
What is Your Line of Work: bartender, restaurant management
How has Fibro affected your ability to work: It was difficult to get enough sleep or rest, therefore contributing to the cycle of pain and tension in my body. Additionally, I was unable to stand and do the same thing repeatedly. It made my body stiff and sore.
How has Fibro affected your life: I just get very disappointed in myself for not being able to be the wife and mother I would like to be. I feel more like a burden than a cornerstone of the family.
What were your first symptoms: My first symptoms were pains in my chest and hips.
Your age at onset of symptoms: 19
How fast was your rate of decline: With every pregnancy I got progressively worse. At 29, after my fourth child, I woke up feeling "stuck" and unable to move my arms.
What are your current symptoms: joint pain, muscle twitching, inability to sleep, headaches, stomach problems
Number of years since you developed symptoms of fibromyalgia: It has been 12 years, but I remember being sick often when I was a child.
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 2
Describe the extent of your brain fog: It is pretty recent, but I find it hard to keep my words from getting mixed up. I was raised speaking Dutch, and I get words confused linguistically. Sometimes I don't know the words for objects.
Estimate number of doctors you have seen for Fibro related symptoms: 9
Do your doctors tend to focus on all your Fibro symptoms: I got lucky with 1 out of 9, but most doctors stick to their specialty.
Do your doctors treat your symptoms individually or collectively: Most doctors like to treat symptoms separately.
Describe your experience with doctors: I find most doctors to treat me as someone who is depressed or maybe hormonal. I have not had many good experiences.
What remedies or medications have you tried: massage, acupuncture, exercise such as yoga or stretching, swimming, dietary changes, steroids, non-steroidal pain meds, tramadol, flexeril, anti-anxiety medications
What makes you feel better: stretching in the morning helps a lot. Certain food changes (no red meat, no sugar, no wheat) have energized me more. Massage and acupuncture have relieved certain symptoms, although additionally both were very painful.
What makes you feel worse: Drinking alcohol has made me feel worse. I usually need a few days to recover if I overdo it. If I don't take care of myself, foodwise, I regret it.
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: yes
Have you tried any thyroid specific treatments: no
Your theories or comments: I think, for myself that hormone imbalance has a lot to do with it. From the time I began menstruating, I have progressively become more "sick". Also, taking care of everyone except yourself adds a lot of strain to a person physically and mentally. So I would say that the best thing to do is to acknowledge that there are limitations, but not to give up, either.
Are we missing any important questions:

 

01/16/2009
First Name: janice p.
Age: 72
Male or Female: female
City: in dependence
State/Province: mo
Country: usa
How long have you lived there: 72 years
Where were you born: 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: homemaker
How has Fibro affected your ability to work: yes
How has Fibro affected your life: it has had an impact on a lot that i try to do
What were your first symptoms: some symtoms i've hd since a teenager, such as brain fog, later in my 40"s inabilty to sleep with out meds, and then an all over feeling of no enery, extreme fatigue
Your age at onset of symptoms: worse at 55
How fast was your rate of decline: Iwould say it was fast
What are your current symptoms: brain fog, restless legs, itching,extreme fatigue,joint pain,muscles spasmsin upper back and neck,lack of motivation
Number of years since you developed symptoms of fibromyalgia: I experienced things as a teen ager
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: most of my life
Describe the extent of your brain fog: inabilty to concentrate,short span of attention etc
Estimate number of doctors you have seen for Fibro related symptoms: 3
Do your doctors tend to focus on all your Fibro symptoms: when i insist , but only sleep,excercise, depromedrol shots for joint pain,
Do your doctors treat your symptoms individually or collectively: individually
Describe your experience with doctors: Most don't understand. They are beginning to know it exists, but know that symptoms they don't kn ow about are thrown into the fibro catagory
What remedies or medications have you tried: prozac, effexor, trazadone, cycobezaprine, amatriptaline
What makes you feel better: trazadone&cycobenzaprine for sleep , Dr.J teitlebaum's high energy drink, Omega 3,magnesium,vitamin D, depromedrol
What makes you feel worse: eating the wrong foods
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride: But I am going to try when i find the sources of flouride
Have you made dietary changes to avoid any other neutrotoxins: avoidaspertane and other suger free products
Have you tried any thyroid specific treatments: my thyroid was shrunk by radiated iodine, and i know take thyroid meds for underavtive thyroid
Your theories or comments: I would hope that you, after compiling information,would give us info on what you have learned.
Are we missing any important questions:

 

01/15/2009
First Name: Terry
Age: 46
Male or Female: female
City: Tampa
State/Province: Florida
Country: usa
How long have you lived there: 17 years
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: yes
What is Your Line of Work: Police
How has Fibro affected your ability to work: Im in constant pain
How has Fibro affected your life: constant pain
What were your first symptoms: painful spasm on arms,due to temperature change along w/neck and should blade pain
Your age at onset of symptoms: 45
How fast was your rate of decline:
What are your current symptoms: the same and now pain on upper left back. Neck pain has increased and is pretty much all the time.
Number of years since you developed symptoms of fibromyalgia: 1
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: collectively with celebrex and massage therapy.
Describe your experience with doctors: frustrating
What remedies or medications have you tried: massage therapy, celebrex
What makes you feel better: warmth and strecthing my neck
What makes you feel worse: drastic change to cold/humid/raining weather
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 received a boniva injection, which caused extreme pain and I was not able to walk for 2 days. Ever since then I live with a similar pain. I feel as if I have a pinched nerve on my neck or as if its compressed to the point that it causes constant cracks to my left side of my neck and then my shoulder.
Are we missing any important questions:

 

01/15/2009
First Name: Becca
Age: 35
Male or Female: FEMALE
City: fITZGERALD
State/Province: gA
Country:
How long have you lived there: 6 MONTHS
Where were you born:
Is this the first time you have taken our questionnaire:
If not, why are you returning:
Are you still working: NO
What is Your Line of Work:
How has Fibro affected your ability to work:
How has Fibro affected your life: IN evey aspect I hurt so bad all the time
What were your first symptoms: Foggy brain musclespasms pain IBS
Your age at onset of symptoms: 30
How fast was your rate of decline: ABOUT 3 YEAS
What are your current symptoms: pain, spasms, ibs, cant sleep, concentration is bad myofaciol knots in tenderpoints
Number of years since you developed symptoms of fibromyalgia:
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 2
Describe the extent of your brain fog: Feels like I am in a fog
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
Describe your experience with doctors: They are doing the best they can
What remedies or medications have you tried: Vicoden, soma, naproxen, wellbutriun,
What makes you feel better: A hot bath being in hot water
What makes you feel worse: Sitting too long standing too long lifting object bending down
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride: tap water
Have you made dietary changes to avoid any other neutrotoxins: I dont snack on junk food eat lots of veggies and low fat foods
Have you tried any thyroid specific treatments: no
Your theories or comments:
Are we missing any important questions: no

 

01/15/2009
First Name: Theresa
Age: 38
Male or Female: Female
City: Phoenix
State/Province: AZ
Country: USA
How long have you lived there: 2 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: server
How has Fibro affected your ability to work: i still work but with pain
How has Fibro affected your life: constant pain, depression, i go to sleep immediately after work at 2pm and get up around 630 to make dinner and then go back to bed at 1000. I get depressed and anxious. I have high blood pressure and sometimes cry for no reason. I cant get comfortable to even watch TV.
What were your first symptoms: Pain in back and shoulders
Your age at onset of symptoms: 37
How fast was your rate of decline: Past year pain has moved throughout my body and is taking an emotional toll. Stress causses great pain.
What are your current symptoms: Pain throughout body, anxious, depression for short periods, gas, feeling sleepy but not sleeping well, restless legs, bloating, irritability to stressful situations, not wanting to do anything.
Number of years since you developed symptoms of fibromyalgia: 1
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: couple months
Describe the extent of your brain fog: Forgeting things temporarily usually remember the same day.
Estimate number of doctors you have seen for Fibro related symptoms: 2
Do your doctors tend to focus on all your Fibro symptoms: No, they said they couldnt test for it, but Im sure I have it
Do your doctors treat your symptoms individually or collectively: Individually
Describe your experience with doctors: Give me colonapan for anxiety, given me pain killers which I don't take because the way I feel.
What remedies or medications have you tried: Just started Magnesium, Fish Oil, HTP, Valerin Root
What makes you feel better: nothing yet
What makes you feel worse: stress, working, being tired
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'm hoping to find a natural way to ease the pain and emotional toll this has taken.
Are we missing any important questions: no

 

01/14/2009
First Name: diane
Age: 52
Male or Female: female
City: monongahela
State/Province: pa
Country: usa
How long have you lived there: 52 yrs
Where were you born: pa
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: store manager
How has Fibro affected your ability to work: can't work
How has Fibro affected your life: aout 2 good hours
What were your first symptoms: tired all the time,joints and body acked all time
Your age at onset of symptoms: 48
How fast was your rate of decline: each year worst
What are your current symptoms: no energy,body hurts,can't sleep,
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: two
Describe the extent of your brain fog: can be saying something and forget in the middle of a sentence
Estimate number of doctors you have seen for Fibro related symptoms: 4
Do your doctors tend to focus on all your Fibro symptoms: no
Do your doctors treat your symptoms individually or collectively: they don't seem to know what to do,
Describe your experience with doctors: they say i have 5 different disease
What remedies or medications have you tried: etodolac 400mg
What makes you feel better: rest
What makes you feel worse: over doing
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: synthroid 137,i have no thyroid
Your theories or comments: feels like i am slowly dieing
Are we missing any important questions: no

 

01/14/2009
First Name: Linda
Age: 47
Male or Female: Female
City: QUINCY
State/Province: IL
Country: usa
How long have you lived there: 9
Where were you born: Urbana
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 standing 5 to 7 hours 3 to 4 times a week. I work in a backer
How has Fibro affected your ability to work: It is painful but I have to woark through the pain
How has Fibro affected your life: Not as active, was depressed but working through it
What were your first symptoms: When my husband or children would rest the hands or head on my legs or arms i felt as though someone wasstabbing me with a knife
Your age at onset of symptoms: 36
How fast was your rate of decline: within a year I was crying all the time because everything just hurt.
What are your current symptoms: I have good days and bad days, but now I am dealing with pain in my hips and back. I can't get any relief
Number of years since you developed symptoms of fibromyalgia: 9 years
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: with in the last 7 years
Describe the extent of your brain fog: Forgeting where I put things forgeting appointments.
Estimate number of doctors you have seen for Fibro related symptoms: 2
Do your doctors tend to focus on all your Fibro symptoms: yes
Do your doctors treat your symptoms individually or collectively: collectively
Describe your experience with doctors: OK. I just with I could live out the pain
What remedies or medications have you tried: I have taken Zoloft, Ultram(currently), Ultram ER(current) Darvacet, IB Prophen, Gabapentin,(did nothing made me feel woozy)
What makes you feel better: all I can say is I have good days and bad.
What makes you feel worse: Change in weather
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:

 

01/14/2009
First Name: Yvette
Age: 63
Male or Female: Female
City: Winter Springs
State/Province: Florida
Country: USA
How long have you lived there: 27 years
Where were you born: Grand Haven Michigan
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 for an Endodontist
How has Fibro affected your ability to work: Brain Fog, body pain, hard to sit at my office computer. Sleep problems.
How has Fibro affected your life: I have been very active in the past, I was into weight lifting, horseback riding, swimming etc.
What were your first symptoms: Neck and shoulder pain. soon followed by headaches & body pains
Your age at onset of symptoms: 45 yrs
How fast was your rate of decline: It went very fast, but I was going through a divorce and I thought it was just part of the stress due to that and lack of sleep
What are your current symptoms: headaches, body pains, jumping legs, brain fog, can't sleep
Number of years since you developed symptoms of fibromyalgia: 18 - 19 years
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: not sure, back awhile
Describe the extent of your brain fog: can't remember what I did yesterday, put things down and can't find them. I can see words in my head but can't always get them out. Lose words as I am speaking
Estimate number of doctors you have seen for Fibro related symptoms: 3
Do your doctors tend to focus on all your Fibro symptoms: one did
Do your doctors treat your symptoms individually or collectively: collectively
Describe your experience with doctors: one was good the others, just said I had to reduce my stress and it would all go away, or it was all in my head.
What remedies or medications have you tried: antidepressants, ice packs, hot packs, diet change, exercise, excedrin
What makes you feel better: sometimes a warm bath will help or gentle message
What makes you feel worse: stress, and alot of activity
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: I have tried everything. cutting out meat, juicing, raw diet. etc
Have you tried any thyroid specific treatments: No my thyroid test comes back low but as long as its in the range my doctor has done nothing about it.
Your theories or comments: I have almost given up. My life has been turned upside down with this. I don't know how I am going to feel from day to day, so I can't really plan anything. Work is getting harder and harder. I do have to make a living but I am not very pleasant to be around when I hurt so badly.
Are we missing any important questions: I'll let you know when I come out of the fog!

 

01/14/2009
First Name: m
Age: 62
Male or Female: m
City: las vegas
State/Province: nv
Country: usa
How long have you lived there: 30 yrs
Where were you born: colorado
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: y
What is Your Line of Work: electronics technican
How has Fibro affected your ability to work: fibrofog makes analize problems, painful to walk and grasp items, headaches cause missed work fatigue, tired all the time, sensitive to noise or sounds, mercury vapor lights flickering
How has Fibro affected your life: same problems. forget what i'm trying to do, painful to do every day things; like wash dishes, vacuum, type on computer, ususally too tired to do anything sound sensitive
What were your first symptoms: knee pain, really pain on the inside of the knee area, at the tinder point on the inside of the knees
Your age at onset of symptoms: 36
How fast was your rate of decline: slow
What are your current symptoms: headaches, pain body wide, all tinder points active, fog, cronic myofascia pain, sound and light sensitive
Number of years since you developed symptoms of fibromyalgia: 28 yrs
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 5 yrs
Describe the extent of your brain fog: comes and goes, forget what im doing, forget what sayins (mostly nouns or names of items, including people) forget where im going sometimes when driving, loose train of thought
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 one or two
Do your doctors treat your symptoms individually or collectively: no, only the pain
Describe your experience with doctors: previous doctors pretty much dimissed my problems, current doctors are trying to understand and they listen to me and my suggestions for treatment
What remedies or medications have you tried: mostly pain relievers
What makes you feel better: lyrica, rest,
What makes you feel worse: loud noises, windy days, stress whether at work or home
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:

 

01/14/2009
First Name: Carol
Age: 57
Male or Female: female
City: Alliance
State/Province: Ohio
Country: USA
How long have you lived there: 20 yrs
Where were you born: East Liverpool
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: COPY PRINT CENTER MANAGER
How has Fibro affected your ability to work: FATIGUE(FLU LIKE) HARD TO STAND FOR 8 HOURS,DIFFICULT TO MUTI-TASK.
How has Fibro affected your life: NO INCOME,SEX LIFE NOT GOOD,I DON'T TRAVEL WELL,IBS,HOUSE WORK IS A REAL CHORE,DEPRESSED,I CAN DO OK ONE DAY AND THE NEXT I CAN'T DO MUCH OF ANYTHING
What were your first symptoms: PAINS IN LEGS,BACK,ARMS,WEAK,NECK STIFFNESS,FATIGUE,BRUISE EASY,SENSITIVE TO THE SUN AND TOUCH.LEGS HURT,SORE THROAT ,INFECTIONS.
Your age at onset of symptoms: 10 YEARS
How fast was your rate of decline: LAST 2 YEARS
What are your current symptoms: FATIGUE, TROUBLE SLEEPING AND STAYING ASLEEP,LEGS HURT,PAIN,COMPLETING A SENTENCE OR SAYING A WORD RIGHT,INFECTIONS.
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: LAST 2 YEARS IS THE WORST
Describe the extent of your brain fog: I CANT DO MORE THAN ONE THING AT A TIME,I FORGET THINGS,CANT THINK RIGHT HALF THE TIME.
Estimate number of doctors you have seen for Fibro related symptoms: 5
Do your doctors tend to focus on all your Fibro symptoms: YES
Do your doctors treat your symptoms individually or collectively: YES THEY TRY
Describe your experience with doctors: MY FAMILY DR.RULED OUT THINGS BY DOING TESTING.THEN HE SEND ME TO CLEVELAND CLINIC WHERE THEY SAID I DID HAVE FIBROMYALGIA FOR SURE.
What remedies or medications have you tried: CYMBALTA,ZANTAC,QUESTRAN,BENTYL I HAVE TO MANY SIDE EFFECTS FROM MEDS
What makes you feel better: HOT SHOWER,DEEP SLEEP,NO STRESS ,MY GRANDCHILDREN(LOTS OF LOVE)
What makes you feel worse: WALKING TO MUCH OR STANDING,COLD AND HOT ON FEET AND HANDS
Have you tried avoiding fluoride in your diet: YES
If so, which sources of fluoride: BOTTLED WATER
Have you made dietary changes to avoid any other neutrotoxins: YES,
Have you tried any thyroid specific treatments: NO, BUT HAD TEST DONE AND MIND ARE FINE
Your theories or comments: KNOWING I HAVE FIBROMYAGIA HELPS BECAUSE I KNOW WHAT I AM DEALING WITH.IF I HAVE A BAD DAY I DON'T WONDER IF I AM CRAZY .IT'S REAL HARD FOR MY HUSBAND TO UNDERSTAND WHY I CAN'T DO WHAT I USED TO DO.
Are we missing any important questions:

 

01/10/2009
First Name: Robert
Age: 34
Male or Female: Male
City: Atlanta
State/Province: GA
Country: USA
How long have you lived there: 2 years
Where were you born: Frankfort, IN
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: investment management, phd student
How has Fibro affected your ability to work: yes
How has Fibro affected your life: chronic pain and low energy
What were your first symptoms: low energy
Your age at onset of symptoms: 18
How fast was your rate of decline: moderate
What are your current symptoms: pain, stiffness, difficulty sleeping and waking
Number of years since you developed symptoms of fibromyalgia: 16
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:
Do your doctors treat your symptoms individually or collectively: both
Describe your experience with doctors:
What remedies or medications have you tried: Cymbalta, Flexeril, green powders, ibuprofen, systemic enzymes
What makes you feel better: Cymbalta, green powders, ibuprofen
What makes you feel worse:
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: no
Have you tried any thyroid specific treatments: no
Your theories or comments: green powders (e.g. wheatgrass) are alkaline and therefore very helpful in battling acidity in muscles. they have increased my energy level as well. Cymbalta was helpful even though I am not experiencing depression, i think fibromyalgia is a sort of physiological depression. stress should also be categorized into mental versus bodily.
Are we missing any important questions: smoking, drinking alcohol,

 

01/09/2009
First Name: kathi
Age: 51
Male or Female: female
City: Plainfield
State/Province: il
Country: usa
How long have you lived there: since1996
Where were you born: chicago,il
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: customer service rep
How has Fibro affected your ability to work: can't sit or stand for any length of time due to pain. No energy.
How has Fibro affected your life: Messed it up.
What were your first symptoms: couldn't get out of bed one morning to much pain and stiffness. no energy
Your age at onset of symptoms: 47-48
How fast was your rate of decline: very fast
What are your current symptoms: with medication Lyrica and Arthrotec can manage better.
Number of years since you developed symptoms of fibromyalgia: 4-5
Do your symptoms include brain fog: no
Number of years since you developed the brain fog: 0
Describe the extent of your brain fog: 0
Estimate number of doctors you have seen for Fibro related symptoms: 3or 4
Do your doctors tend to focus on all your Fibro symptoms: now my primary care does
Do your doctors treat your symptoms individually or collectively: collectively
Describe your experience with doctors: took a couple years to diagnose fibro. I also have arthritis in hip,spine,knee.
What remedies or medications have you tried: lyrica and arthrotec seem to be helping alot for about 6 or 9 months now
What makes you feel better: combo of rest and meds.
What makes you feel worse: doing too much, going over my limits.
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride: just started using ice mountain water on a regular basis because or tap water tastes like bleach.
Have you made dietary changes to avoid any other neutrotoxins: not really
Have you tried any thyroid specific treatments: no
Your theories or comments:
Are we missing any important questions:

 

01/08/2009
First Name: leanne
Age: 39
Male or Female: female
City: arnprior
State/Province: ontario
Country: canada
How long have you lived there: 4 yrs
Where were you born: ottawa
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: making crafts ,to busy whith family right now
How has Fibro affected your ability to work: i wasn't creating things
How has Fibro affected your life: i was bribing my children to help me
What were your first symptoms: i was tired alot, no energy, almost lethargic, hardly any memory, foget things almost immediatly
Your age at onset of symptoms: sometime between 12 to 14 - recently at age 38
How fast was your rate of decline: really fast and getting worse until recently
What are your current symptoms: i still feel tired alot, and i still suffer from brain fog sometimes.
Number of years since you developed symptoms of fibromyalgia: coud be as long as 27 years
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: im not quite sure
Describe the extent of your brain fog: i will put something down and immediately forget about it or where i put it
Estimate number of doctors you have seen for Fibro related symptoms: 1
Do your doctors tend to focus on all your Fibro symptoms: i guess so
Do your doctors treat your symptoms individually or collectively: we never spoke about fibromyalgia
Describe your experience with doctors: i think very highly of my doctor, i respect her opinion she is very busy so i am looking for self healing
What remedies or medications have you tried: anti-deppressants, now vitamins
What makes you feel better: aromatherapy
What makes you feel worse: 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:
Have you tried any thyroid specific treatments:
Your theories or comments:
Are we missing any important questions:

 

01/08/2009
First Name: Diana
Age: 44
Male or Female: female
City: Newcastle upon Tyne
State/Province: Tyne & Wear
Country: U.K.
How long have you lived there: 1 year
Where were you born: Greensburg, Indiana
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: It is a struggle just to get up and come into work. The brain fog is so bad somedays I have to ask for information to be repeated. A constant struggle
How has Fibro affected your life: I have not been able to finish my degree. I need 16 hours of classes and have not been up to finishing. I have lost a marriage of 23 years and blame it on this horrible disease and the inability of explaining it to people. My family never understood it (I dont even understand it!) and they seem to agree with the medical community who simply think it is an offshoot of depression or just plain laziness.
What were your first symptoms: My hips were aching so bad I thought i needed a replacement, and this was at 34 years old.
Your age at onset of symptoms: around 34 years old
How fast was your rate of decline: started as general pain, progressed over two years or so to debilitating
What are your current symptoms: PAIN, brain fog, loss of balance, weight gain, numbness and tingling in toes and fingers
Number of years since you developed symptoms of fibromyalgia: 10 years
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: about 5 years
Describe the extent of your brain fog: I am an intelligent woman, have been the director of a government agency. Sometimes now I cant remember the words I am looking for, become confused, I have recently moved to a new country and have not driven for almost a year, I know I cant remember directions or the new road rules. I have driven without problems for 30 years and now have to rely on someone else. Its a very humbling disease.
Estimate number of doctors you have seen for Fibro related symptoms: 5 but quit for years after the first diagnosis becasue I didnt want to believe it
Do your doctors tend to focus on all your Fibro symptoms: this question makes me laugh, I have been told so often that it is a mental problem I was starting to believe it myself. No they definitely dont focus on all of it
Do your doctors treat your symptoms individually or collectively: They really just try to give pain medicine. I spent years of my life in a medical induced fog.
Describe your experience with doctors: One told me that I must have lots of problems in my life and when I decided to tell him all about them the pain would go away and he would know better which anti depressant to treat me with. It's horrible, it makes you feel like a failure and to question your own mind.
What remedies or medications have you tried: Vioxx, Elavil, Vicodin, Xanax, numerous vitamins and natural supplements
What makes you feel better: At the moment nothing does
What makes you feel worse: Weather changes, exercise, excessive walking
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: not really
Have you tried any thyroid specific treatments: no, the doctors have always checked my thyroid and then tell me its fine
Your theories or comments: I have always thought this was a viral problem, but the floride makes sense too. The only time in ten years I have gotten any relief was after a surgery. I had a week of pure bliss. I remember the nurses trying to keep me down and I kept saying "you cant imagine how good I feel, I could climb mountains" This sadly only lasted about a week. I have (jokingly) asked the doctor about putting me under again just for a week of painlessness. That week did remind me of how good life painfree can be, which is why I am still searching for something to help me.
Are we missing any important questions:

 

01/07/2009
First Name: Karla
Age: 44
Male or Female: Female
City: Souris
State/Province: MB
Country: Canada
How long have you lived there: 4 years
Where were you born: no
Is this the first time you have taken our questionnaire: Yes
If not, why are you returning:
Are you still working: yes
What is Your Line of Work: Office Clerk
How has Fibro affected your ability to work: Very sore some days at work, poor concentration, have had to ,iss work
How has Fibro affected your life: constant pain, tired all the time, poor memory
What were your first symptoms: neck/back/shoulder pain, exhaustion
Your age at onset of symptoms: 40
How fast was your rate of decline: 6 months
What are your current symptoms: pain in low back, shoulders, neck, elbows, chest, dowm legs and groin. Bad memory, fatigue, palpitations, sleeplessness, headaches, no concentration
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: 1.5
Describe the extent of your brain fog: some days don't notice it at all, next day it's like I haven't slept for days and can't comprehend things or can't remember people telling me things. I use a lot of notes and the calender on my computer on a daily basis
Estimate number of doctors you have seen for Fibro related symptoms: 3
Do your doctors tend to focus on all your Fibro symptoms: no they usually try to focus on pain
Do your doctors treat your symptoms individually or collectively: 2 specialists sent back results and ideas to my family dr.to let him know what they thought should be done
Describe your experience with doctors: some days good/ some bad. SOmedays feel like it's all in my head and I would like them to live in my body for one day when I am really sore.
What remedies or medications have you tried: t 3's, ketoprofen, ibuprofen, robaxisal, robaxicette, tylenol, asprin, lakota, celebrex, prexige, lyrica, naproxen, flexerall, amytriptiline, zopiclone
What makes you feel better: ketoprofen worked the best but was very hard on stomach so I had to quit taking it. So now before bed I take 2-t3's 20 mg amytriptiline and a zopiclone. Seems to be the only way I get a half decent sleep.
What makes you feel worse: stress!!! weather changes, alcohol
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 cut back some on sugars
Have you tried any thyroid specific treatments: no
Your theories or comments:
Are we missing any important questions:

 

01/07/2009
First Name: cindy
Age: 48
Male or Female: female
City: napa
State/Province: ca
Country: us
How long have you lived there: 15 yrs
Where were you born: california
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: No, short term disability
What is Your Line of Work: Bank Manager
How has Fibro affected your ability to work: Pain, fatigue and "fibro fog" interfere with ability to concentrate. Also have visual disturbances which caused me alot of anxiety. Until just recently I was unaware that this symptom was in fact one associated with fibro, I was concerned there was something else going on. I no longer drive once it is dusk, somedays not at all. I have alot of blurred and double vision. Just like most of the other symptoms, I don't know how my vision will be from one day to another.
How has Fibro affected your life: My career has been a very rewarding part of my life which has contrubuted greatly to my self esteem and self worth. Being unable to work or find doctors who understand this condition is frustrating and can erode ones self esteem. Also am unable to carry out many household tasks that I previously could. Need many rest periods in between. I have great support at home and am thankful for what I do have. I try to stay upbeat but have periods, mostly due to pain, where I am just worn down and cry. I may be in line at the store, post office, etc. and just have to leave because I don't feel well enough to wait.
What were your first symptoms: Extreme fatigue and/or exhaustion. I had had some aches and pains over the years, including tenderness (not including the kidney pain) but had no idea this could be related to my fatigue. It didn't feel the same as when you stay up too late and don't get enough sleep. It felt as if someone just unplugged me. I often described the fatigue like Dorothy in the poppy field. I felt almost drugged. I had allergy testing done thinking maybe that was the cause. Someone could have told me I just won a million bucks and all I would have to do was go to the corner store to claim it and I felt as if I would not have been able to go. Now that's pretty tired and exhausted!!
Your age at onset of symptoms: 43
How fast was your rate of decline: Muscle stiffness, tissue pain and tenderness slowly increased over the years. The other types of pain, fatigue and visual disturbances are intermittent
What are your current symptoms: In addition to pain, fatigue, and visual disturbances I experience muscle twitches or spasms, restless leg syndrome, itchy spots, feeling of sunburn, tremors and more. Many of these come and go. Breasts, nipples go through periods of itching and numbness.. Overly sensitive labido,other times almost numb. It seems that when I have been exposed to a virus I will have an episode where my syptoms worsen. My hands will become so numb while sleeping that they feel "dead" and wake me up from my sleep. I will also have interupted breathing patterns that wake me from my sleep. I feel as though the virus settles into my nervous system.
Number of years since you developed symptoms of fibromyalgia: It's been 5 years for many symptoms, but when I think back I've had some that are probably related for 20 years or more.
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 10
Describe the extent of your brain fog: Many times I will forget what I'm saying, or can't find the right words. I may jump from one subject to another. Many times I can't remember if I asked a question and just forgot the answer or if I never even asked the question in the first place. While at work I would find my self many time staring into space like my brain was locked or just not making a connection. I would be completing a simple task that I had done many times before but I would't be able to think of how to do it. I like to be organized but always seemed to be looking for something I misplaced. My team even bought me a birthday card one year relfecting this. They are great and they helped me out alot!!
Estimate number of doctors you have seen for Fibro related symptoms: about 10 to 12 over the years, including ER visits
Do your doctors tend to focus on all your Fibro symptoms: No, but hopefully we are getting there
Do your doctors treat your symptoms individually or collectively: It depends. Just started with a new doctor.
Describe your experience with doctors: Frustrating and painful, although there have been some comical moments also. I believe writing is therapeutic (can you tell) and am thinking of writing a skit and sending it into Saturday Night Live or somewhere. I have left many visits more frustrated than when I arrived and many times in tears. Sometimes even in disbeleif. It scares me to think of what others must be going through. Many doctors are not knowledgeable and are overschedule, overworked and overwhelmed. Our health care system is in a crisis. As frustrated as I have been with many doctors I have to admit that I still feel sorry for them.
What remedies or medications have you tried: Currently on Elavil 10mg at dinner and Aleve 2x daily for 3 days on and 2 days off. This seems to have releived some stiffness but does not help the severe gnawing pain in my back. Have tried Darvocet but have determined that the pain comes and goes on it's own. The pain meds don't touch it and it eventually resolves on it's own.
What makes you feel better: Warm water and mild excercise. We purchased a hot tub this year and while in the water it really helps. Sometimes the pain is present as soon as I get out of the water, but other times it relieves it for a while. Even on my worst days I try to go for a walk. I find that once I get going it helps. The pain is usually less than when I am sitting or standing. I have worked my way up to 20 minutes. Sometimes I will have to stop along the way but not usually. I do rest once I get home. I go to a group luncheon once a month whether I feel up to it or not. I feel like the payoff is worth it. It is good to be around others. I am also looking to volunteer at the animal shelter where I can apply to walk the dogs. There is no set schedule so I can show up whenever I feel up to it and the dogs won't know if I skipped a visit. They will just be happy to see me.
What makes you feel worse: Over exertion and stress. I have never been a sit around kind of person and I have to remind myself that if I over do it when I am having a good day I am likely to have several bad days. When my son, his wife and my grandson visited I really tried to rest between outings and get plenty of sleep. I still wanted to carry my grandson around and I paid for it for a couple of weeks. I think the trade off was worth it. The prior visit, being the first time I had ever seen him I wasn't even able to lift him.
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 try to avoid processed foods as much as possible. Also caffeins and sugars, I am sensitive to them and can tell a difference when I consume them.
Have you tried any thyroid specific treatments: no
Your theories or comments:
Are we missing any important questions:

 

01/07/2009
First Name: maryann
Age: 53
Male or Female: female
City: walla walla
State/Province: wa
Country: us
How long have you lived there: 8 years
Where were you born: california
Is this the first time you have taken our questionnaire: yes
If not, why are you returning:
Are you still working: yes
What is Your Line of Work: teaching disabled adults
How has Fibro affected your ability to work: concentration is hard when I am in pain. Can't lift or stand up for long.
How has Fibro affected your life: For years I was depressed and unable to do much except care for my kids. Always in pain. For over a year I could barely walk due to foot pain. The neck pain and jaw pain causes headaches frequently. I have missed out on a lot of fun due to pain and fatigue. I have made many decisions with poor judgment due to my mental and physical state
What were your first symptoms: lower back pain
Your age at onset of symptoms: 26
How fast was your rate of decline: gradual at first. after about five years began to go downhill rapidly. leg pain, arm pain, headaches, insomnia, numbness in legs and feet. increasing neck and shoulder and back pain
What are your current symptoms: The last year has been better due to grapefruit seed extract, flaxseed oil and a diet of vegetables. When I eat unhealthy food I immediately start to decline. I am still in pain every day just seem to handle it better.
Number of years since you developed symptoms of fibromyalgia: 23 years
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: about 10 years
Describe the extent of your brain fog: 10 years ago it was so bad that I couldn't pay bills, find my way to the children's school etc: It is way way better since I use grapefruit seed and flaxseed oil and eat well
Estimate number of doctors you have seen for Fibro related symptoms: 8 or 9
Do your doctors tend to focus on all your Fibro symptoms: No! They usually focus on one at a time. That is until I was diagnosed with fibromyalgia about 10 years ago
Do your doctors treat your symptoms individually or collectively: Now my doctor treats my symptoms collectively
Describe your experience with doctors: Bad. I have been ridiculed by them. I have been ignored by them. I have been made to feel that I am simply depressed and need to shape up.
What remedies or medications have you tried: probably about 15 different antidepressants. 5 or 6 pain medications. seizure medications. massage. physical therapy. acupuncture
What makes you feel better: acupuncture definitely helped with headaches
What makes you feel worse: massage.
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: no
Have you tried any thyroid specific treatments: I take thyroid medication and have for 25 years
Your theories or comments: I know that 6 out of seven women in my immediate family have all the same symptoms that I have. My mother is a depressant. I believe that all my illnesses are interwoven and something tells me that there is a cure for the pain.
Are we missing any important questions: genetics

 

01/06/2009
First Name: Teresa
Age: 42
Male or Female: female
City: Trenton
State/Province: GA
Country: USA
How long have you lived there: 42 years
Where were you born: Florida
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/Scribe in an orthopaedic office
How has Fibro affected your ability to work: I suffer from daily joint and skin pain as well as brain fog. I wake up so swollen and stiff, it is a constant struggle just to make it through the day. It is becoming more and more difficult to get up in the mornings as I am so chronically tired and stiff. I also have narcolepsy, which doesn't help matters. I also suffer with the brain fog, which affects my ability to concentrate on what I am doing.
How has Fibro affected your life: I have always been a hyper, go-getter type of person who is always on the go....now I can barely make it through work and then when I come home, I crash...I can barely manage to cook dinner, much less do the dishes afterwards. Housework causes me so much pain, and I am so tired and achy, most of the time now I just let it go, which is NOT how I used to be. I am too tired to really socialize with family, much less be intimate with my husband, who, bless his heart is the most understanding and compassionate person I know. However, he does get aggravated with the "brain fog"....as I feel like I am in a daze most of the time and unable to concentrate. Also with the effects from fibro plus the narcolepsy, I fall asleep during work days even though I am on medication for both. It is absolutely the most horrible feeling I have ever had!
What were your first symptoms: Constant chronic fatigue and joint pain. Having to take very long naps (5-6 hours).
Your age at onset of symptoms: 40
How fast was your rate of decline: Rapid.....symptoms have come at me with a vengeance.
What are your current symptoms: Swelling and intense pain in hands and feet, elbows, legs, hips...skin/nerve pain in arms and legs, chronic fatigue and brain fog, excessive sleepiness.
Number of years since you developed symptoms of fibromyalgia: Two
Do your symptoms include brain fog: YES
Number of years since you developed the brain fog: one
Describe the extent of your brain fog: Pretty severe most of the time, I rarely have a day without it. Forget what I am doing within a split second. Will walk into a room and instantly forget what I went for...
Estimate number of doctors you have seen for Fibro related symptoms: 2
Do your doctors tend to focus on all your Fibro symptoms: yes
Do your doctors treat your symptoms individually or collectively: Collectively
Describe your experience with doctors: Fortunately I have very a very compassionate rheumatologist and sleep disorder physician who both try very hard to help me.
What remedies or medications have you tried: Currently taking Cymbalta and Lyrica (at night as they make me sleepy) and taking Celebrex twice a day for the joint pain...taking Provigil for the narcolepsy most of the time twice a day.
What makes you feel better: Currently I am not sure...at first the medications seemed to be helping, but recently my "flares" have become a lot more frequent. Sometimes just staying in bed helps.
What makes you feel worse: Getting out of bed!
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride: Tap water, toothpaste.
Have you made dietary changes to avoid any other neutrotoxins: no
Have you tried any thyroid specific treatments: no
Your theories or comments: I am really at a loss. I am 42 years old and my body feels like I am 72 years old. It is very frustrating to be so debilitated most of the time, I get tired of complaining about it....some days I just want to cry due to the frustration.
Are we missing any important questions: No

 

01/06/2009
First Name: lesa
Age: 40
Male or Female: f
City: bunker
State/Province: mo
Country: usa
How long have you lived there: 38
Where were you born: missouri
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: librarian
How has Fibro affected your ability to work: makes it harder to remember things and I get very tired
How has Fibro affected your life: I feel like a half a person and very weak and the pain makes me very cranky
What were your first symptoms: tiredness
Your age at onset of symptoms: 32
How fast was your rate of decline: slow but I fight it
What are your current symptoms: tiredness, pain, forgetfullness,
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: can't remember anything
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: they don't help me
What remedies or medications have you tried: felexeral and natural remedies
What makes you feel better: vegaterian diet
What makes you feel worse: 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: I try to avoid MSG and sugar
Have you tried any thyroid specific treatments: no
Your theories or comments:
Are we missing any important questions:

 

01/06/2009
First Name: BARBARA
Age: 46
Male or Female: FEMALE
City: Noble
State/Province: OKLAHOMA
Country: UNITED STATES
How long have you lived there: 20 YEARS
Where were you born: OKLAHOMA CITY
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: I CAN'T DO ANYTHING . WALKING CAUSES PAIN, STANDING CAUSES PAIN, MY HANDS DON'T WORK, MOST OF THE TIME. CAN'T THINK STRAIGHT. CANNOT CONCENTRATE.ETC
How has Fibro affected your life: WHAT LIFE? THE PAIN OF FIBROMYALGIA ,IS DEBILIATATING. I'M IN TOO MUCH PAIN TOO HAVE A LIFE OUTSIDE MY HOME , LET ALONE FRIEND'S IF IT WERE NOT FOR THE INTERNET I WOULD HAVE NO SOCIAL INTERACTION.
What were your first symptoms: BURNING SENSATION , MY SKIN WOULD BE ON FIRE, COULD NOT EVEN STAND TOO TOUCH MYSELF.
Your age at onset of symptoms: 25
How fast was your rate of decline:
What are your current symptoms: swelling hands and grip problems, burning pain like tendon problems in my elbows. sever weekness, severe depression, pain in my right side. gallbladder pain , swelling under my rib cage so much that i have to lean too the left to allow for some relief.
Number of years since you developed symptoms of fibromyalgia: starting at age 25,and the symptoms continue too get worse.
Do your symptoms include brain fog: omg brain fog is very bad, on good days i manage to get a few things done, befor i find my self wandering from room too room, trying finish what i started ,
Number of years since you developed the brain fog: in the last ten years, it seems to have gotten worse
Describe the extent of your brain fog: Forgetful , misplace things all the time, cant remember appointments birthday's sometimes the names of people i know. cant remember if i took my med's for the day or not .
Estimate number of doctors you have seen for Fibro related symptoms: `15 or more
Do your doctors tend to focus on all your Fibro symptoms: no.
Do your doctors treat your symptoms individually or collectively: no
Describe your experience with doctors: my last visit too a doctor. my newest symptom, the pain in my side that cannot explained, he told me it was caused by anxiaty.the pain gets so bad i end up in the er. have had and M R I, a Cat Scan An Ultrasound, a Hidal Scan All Came back with nothing wrong,and they send me away with another pain pill.i have also been told the pain was all physcological
What remedies or medications have you tried: Just about everything out there. valiume, dimerol, morphine,nortriptoline.paxil,zoloft.orphenadrine, meloxicam,xnax,theragesic patches,
What makes you feel better: nothing, occasional relief with thermacare heat wrap's
What makes you feel worse: doing any kind of physical activity standing, walking, sitting
Have you tried avoiding fluoride in your diet: did not know about the floride until recently
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: where do i start?
Have you tried any thyroid specific treatments: don't have any insurance, can't afford med's as it is.
Your theories or comments: THIS IS NO WAY TOO HAVE TO LIVE A LIFE, IN PAIN TWENTY FOR SEVEN, THE OVERWHELMING SADNESS. THE DEPRESSION. CRYING ALL THE TIME. NO ENERGY. JUST WANTING TOO GO TO SLEEP.AND CAN'T HAVING TO DEPEND ON EVERYONE ALL THE TIME. SO VERY VERY SAD, I DO FEEL SORRY FOR MYSELF. AND ANYONE WHO EXPERIENCE'S THE PAIN OF FIBROMYALGIA, MAY GOD HAVE MERCY ON US.
Are we missing any important questions: YES , WHY HAS THIS BEEN DONE TOO US, AND WHAT ARE THEY GOING TOO DO TO HELP US?

 

01/06/2009
First Name: Carol
Age: 59
Male or Female: Female
City: Fort Gibson
State/Province: Oklahoma
Country: USA
How long have you lived there: 58 years
Where were you born: El Paso, Texas
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: Engenering testing technician for an electrical company
How has Fibro affected your ability to work: I am no longer able to do my job physically or mentally. I was responsible for setting up and running tests on a 20 story power plant. I finally took leave when I could no longer make sense of any of the tests I had run. I was also afraid that I would get someone hurt, working on high pressure lines and electrical equipment.
How has Fibro affected your life: Completely taken over my life
What were your first symptoms: 1. Got relly sick, but, never ran a fever. Just flu like symptoms. 2. Got Bells Palsy, that never went away. Finally have had to take botox shots, to keep my right eye from slaming shut and my face from constantly twitching. 3. Rashes. All kinds. They would be the big splotchy spots and then the next time it would be a little rashy rash. 4. Skin sensitivity. My skin would be so painful to touch. If I went out in the areas where it was hot, it felt like someone holding a hot iron to my skin. 5.TIREDNESS. Total exhaustion. 6. Complete inability to think. I could not even get to work by myself. My husband had to take me to work and bring me back home. I would get lost just trying to get to town. Luckily it was in a time when the plant was down and the men that I worked with helped me get through it. Really, they were afraid that it was something that we had been exposed to and that they might get sick too. 7. Had trouble expressing what I was trying to say. Like I knew what something was, but couldn't get my mouth to say it.
Your age at onset of symptoms: 38
How fast was your rate of decline: I first got sick in 1987 and after my first rally bad time was able to pull myself and push myself until the end of 1993. All of my vacation days, sick days and lots of unpaid day later.
What are your current symptoms: Aches and pains, FOG, stomach, digestion problems, tingles, eye twitch. Loss of most facial expression in the right side of face. Still get rashes. Took lamictal and broke out in what looked like blood blisters on my arms and mouth. They would even break open like blisters. I am no longer able to do anything physical. It is all I can do to watch a grandchild for an hour or two.
Number of years since you developed symptoms of fibromyalgia: 22 years
Do your symptoms include brain fog: Yes
Number of years since you developed the brain fog: 22 years
Describe the extent of your brain fog: Can not remember names of objects or people that I have known all my life. Sometimes don't know exactly where I am or how I got there for a few minutes. At times it gets worse than other times. I have just started paying the bills again. My husband took care of it for the past two years, because, I was totally incapable.
Estimate number of doctors you have seen for Fibro related symptoms: 20
Do your doctors tend to focus on all your Fibro symptoms: no, they tend to find something that they think they can fix and work on that. Even if it is not the reason I went in the first place.
Do your doctors treat your symptoms individually or collectively: Usually individually
Describe your experience with doctors: Out of all the doctors I have seen only two believed that there is such a thing.
What remedies or medications have you tried: Everything that I have heard of even the silver solution that you drink, All kinds of pain meds, muscle relaxer, stomach medicine, now I am on Wellbutrin, Cymbalta, Lyrica. Which seems to help to some extent.
What makes you feel better: Warm showers my family my dog anything that keeps me from thinking about pain.
What makes you feel worse: Cold weather, rain, too much activity at one time.
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:

 

01/06/2009
First Name: Jo
Age: 75
Male or Female: Female
City: Rio Rancho
State/Province: New Mexico
Country: USA
How long have you lived there: Almost all my life
Where were you born: New Mexico
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: Writer
How has Fibro affected your ability to work: A lot of pain but keep working in order to finish writing projects. I love to write and have had some success as a creative writer.
How has Fibro affected your life: No. I push myself to the limit. I have recently (three days) began taking ACV with Soda three times daily a day.
What were your first symptoms: Couldn't swallow and no strengh in speech.
Your age at onset of symptoms: 73
How fast was your rate of decline: In about four years
What are your current symptoms: Can only eat liquid foods and toast. Other food gets stuck in throat
Number of years since you developed symptoms of fibromyalgia: About four years. Doctor diagnosed as Fibro. No medication. Doctor moved to Texas two years ago and have a new doctor.
Do your symptoms include brain fog: No
Number of years since you developed the brain fog: N/A
Describe the extent of your brain fog: I actually don't know what "Brain Fog" means.
Estimate number of doctors you have seen for Fibro related symptoms: Only my family doctor diagnosed fibro four years ago. Then when things became unbearable and the swallowing and talking began to develop
Do your doctors tend to focus on all your Fibro symptoms: They focusing on every part of my body with MRIs trying to identify illness. The diagnosis should be identified in about three weeks. Am having a brain scan on 1/15/09. Visits have been to specialists. Of late, the voice and swallowing muscles stopped functioning normally. I don't take medication because my brain has to be clear in order to write. I tend to forget things but feel that it is due to my age.
Do your doctors treat your symptoms individually or collectively: I have seen specialist and they are working collectively.
Describe your experience with doctors: They have been wonderful and very caring. They are all aware that my body reacts negatively to medication.
What remedies or medications have you tried: None
What makes you feel better: Sunshine
What makes you feel worse: Cold weather
Have you tried avoiding fluoride in your diet: No
If so, which sources of fluoride: I have not paid attention to my intake of liquids and no nothing about flouride
Have you made dietary changes to avoid any other neutrotoxins: No
Have you tried any thyroid specific treatments: No
Your theories or comments: I have been stunned because I am physically strong, but am in constant muscle pain.
Are we missing any important questions: No, because I have paid little or no attention to my healthyh until the past year when I had to change eating habits - using the blender to liquify food.

 

01/05/2009
First Name: Tonda
Age: 31
Male or Female: Female
City: Wichita
State/Province: KS
Country: USA
How long have you lived there: 6.5yrs
Where were you born: Detroit, MI
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: engineer/desk work
How has Fibro affected your ability to work: shorter hours, need more flexible schedule and FMLA for days off
How has Fibro affected your life: have no energy for anything, tired all the time, rarely do anything recreational, only have energy for work
What were your first symptoms: IBS/fatigue
Your age at onset of symptoms: 25
How fast was your rate of decline: took about 5 years to get really bad
What are your current symptoms: chronic fatigue/brain fog/aches/pains/chostochondritis/chronic hives/allergies/IBS/tendonitis/joint pain/scholiosis from muscle spasm
Number of years since you developed symptoms of fibromyalgia: 6
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 1
Describe the extent of your brain fog: somedays very extreme, constantly lose train of thought/forget what I was just thinking about
Estimate number of doctors you have seen for Fibro related symptoms: 7
Do your doctors tend to focus on all your Fibro symptoms: No
Do your doctors treat your symptoms individually or collectively: Individually
Describe your experience with doctors: I've been very disappointed and not really offered any treatments
What remedies or medications have you tried: Amitryptilene/Flexeril/Lexapro/Celexa/Effexor XR/Zoloft/Cymbalta/all allergy medications/Provigil/Lunesta/Ambien/Librax/Vitamins/Hot Tub/Physical Therapy/Excercise
What makes you feel better: Physical Therapy/Flexeril w/Advil
What makes you feel worse: Cardio
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 - supplements
Your theories or comments:
Are we missing any important questions:

 

01/01/2009
First Name: Robin
Age: 37
Male or Female: female
City: Huntsville
State/Province: Alabama
Country: United States
How long have you lived there: 37 years
Where were you born: Decatur, AL
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: disabled
How has Fibro affected your ability to work: I am not able to work.
How has Fibro affected your life: I am not able to function on a normal daily lifestyle. I stay in bed most days and am not able to do anything including normal activities such as cleaning or cooking. It has even gotten to where it is hard for me to get out of bed to take a bath and I only do this when I have to go to the doctors or somewhere.
What were your first symptoms: severe pain, fatigue, muscle spasms, injured easily
Your age at onset of symptoms: 14
How fast was your rate of decline: not very fast at first but the last 3 years have been very fast
What are your current symptoms: severe pain, fatigue, muscle spasms, injured easily, memory loss, tmj, sleep disturbance, pressure points, many others to many to list
Number of years since you developed symptoms of fibromyalgia: 23
Do your symptoms include brain fog: yes
Number of years since you developed the brain fog: 2
Describe the extent of your brain fog: severe
Estimate number of doctors you have seen for Fibro related symptoms: 7
Do your doctors tend to focus on all your Fibro symptoms: some, I've seen different doctors for different reasons such as pain
Do your doctors treat your symptoms individually or collectively: both
Describe your experience with doctors: I've had good and bad
What remedies or medications have you tried: I've tried some over-the-counter meds that didn't really help then some dr.'s had me on some meds like tramadol that didn't help now I am on lortab 7.5 3x daily, morphine er 60 2x daily, lyrica 75mg 2x , seroquel 400mg, zanaflex 8mg, requip 1mg, ambien 10mg, zegrid 40mg, effexor 150mg, topomax 200mg,
What makes you feel better: the pain meds to a point but they are beginning to not work
What makes you feel worse: bending, walking, pretty much anything
Have you tried avoiding fluoride in your diet: no
If so, which sources of fluoride:
Have you made dietary changes to avoid any other neutrotoxins: no
Have you tried any thyroid specific treatments: no
Your theories or comments:
Are we missing any important questions: no

 

 

Case Studies from Previous Months...
October 2009 case studies.
September 2009 case studies.
August 2009 case studies.
July 2009 case studies.
June 2009 case studies.
May 2009 case studies.
April 2009 case studies.
March 2009 case studies.
February 2009 case studies.
January 2009 case studies.
December 2008 case studies.
November 2008 case studies.
October 2008 case studies.
September 2008 case studies.
August 2008 case studies.
July 2008 case studies.
June 2008 case studies.
May 2008 case studies.
April 2008 case studies.

 

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

Back to Fibromyalgia Holistic Cures