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Fibromyalgia Questionnaire & Results

Latest Update: 08/27/2008 

If you suffer from the widely misunderstood, crippling condition known as Fibromyalgia and would like to anonymously share some of the details of your experience, please take time to answer our QUESTIONNAIRE!

While even many physicians tend to associate Fibromyalgia only with extreme muscle pain & stiffness, the chronic condition includes a long list of symptoms, many of which are severely debilitating. Cognitive difficulties, widespread joint pain, extreme fatigue, gastrointestinal problems and thyroid dysfunction, all play a major role in the crippling nature of Fibromyalgia.

SHARING INFORMATION & EXPERIENCES
The information that you share with us in our questionnaire is summarized in an effort to help those suffering from this disturbing disorder.

Our SUMMARY OF QUESTIONNAIRES is a great way to explore some of best, uncensored advice and feedback that we have received from the more than 820 people that have already responded to our questionnaire!

Here are just two examples of the kind of important feedback you have given us so far...

Cognitive dysfunction, which ranges from concentration & short-term memory problems to brain fog (that borders on dementia in the most severe cases), is a symptom shared by over 93% of those that have completed our questionnaire. And yet, shockingly, many respondents indicate their doctors still don’t even know this symptom is associated with Fibromyalgia!

Similarly, while growing evidence speaks to a link between fibromyalgia and thyroid dysfunction, many in the medical community are unaware of this seemingly important connection. Nevertheless, without even asking a specific question in our survey on thyroid dysfunction, it was impossible to ignore the thyroid problems that are so commonly associated with Fibromyalgia.

Learn about Fibromyalgia directly from those who suffer from the condition!

1   What advice to they have?
2   What initial symptoms do they share?
3   How do their symptoms advance?
4   What are their theories and comments on the condition?
5   What treatments do they suggest?
6   How debilitating are their symptoms during the various stages?
7   How are they treated by physicians, as one symptom after the next slowly emerge?

Please note, the author of "The Cause of Fibromyalgia" has been most generous with Earth Clinic and has helped us compile all of our questionnaires between 2005-2008. We are so grateful for the brilliant, pro bono work he has done on this project.

THANK YOU SO MUCH TO EVERYONE WHO TOOK THE TIME TO ANSWER OUR QUESTIONNAIRE!

EXPLORING QUESTIONNAIRES, BY PERSON
We have added a second tab to our SUMMARY OF QUESTIONNAIRES to help you locate the questionnaire of each respondent. Thus, if you find some information provided by a specific person that you find particularly useful, you can quickly find the answers they provided to the rest of the questions in our archives, below.

 

33 QUESTIONNAIRE COMPLETED DATA FORMS FOR August 2008

08/27/2008
Name: M
City: Addis Ababa
State/Country: Ethiopia
Your Sex: f
Where Were You Born? Addis Ababa
Where Do You Live Now? Addis Ababa
How Long Have You Lived There?
Your Age? 31
How many years has it been since you developed your symptoms of fibromyalgia? 10
Your Age At Onset of Symptoms? 20
What is Your Line of Work? Still working? teacher yes working
Medical History: none
Does Exercise Help? yes walking
What Were Your First Symptoms? Back pain
What Are Your Current Symptoms? back pain, Stifness, tiredness, sensetive fingers
Did You Ever Have A Long Lasting Virus? no
Any Military Service? no
Chemical or Pesticide Exposure? no
How Has Fibro Affected Your Life? yes
What Makes Symptoms Worse? cold, weight gain, no exercise
What Makes You Feel Better? heat
Do Your Symptoms Include Brain Fog? no
How many years has it been since you developed the brain fog associated with fibromyalgia? no
Was Your Rate of Decline Fast? no
Have You Tried Avoiding Dietary Fluoride? no
Remedies Tried: pain killer tabs, massage
Your Theories:
Are We Missing Any Important Questions?

 

08/26/2008
Name: rachelle
City: ward
State/Country: arizona
Your Sex: female
Where Were You Born? lubbock, texas
Where Do You Live Now? tucson, arizona
How Long Have You Lived There?
Your Age? 20 years
How many years has it been since you developed your symptoms of fibromyalgia? 15 years
Your Age At Onset of Symptoms? 27
What is Your Line of Work? Still working? can't work
Medical History: three facial reconstructive surgeries and a lot of accidents (wrecking cars, motorcycles, etc.)
Does Exercise Help? only stretching
What Were Your First Symptoms? dropping everything and morning stiffness
What Are Your Current Symptoms? constant overall pain, a lot of weight loss (no appetite), no stregnth
Did You Ever Have A Long Lasting Virus? no
Any Military Service? no
Chemical or Pesticide Exposure? a lot of vax's growing up, birth control
How Has Fibro Affected Your Life? made it very hard everyday but I'm still fighting
What Makes Symptoms Worse? moving around, rain
What Makes You Feel Better? hot baths, hot tub, extra blankets
Do Your Symptoms Include Brain Fog? oh yes, I just take a lot of notes
How many years has it been since you developed the brain fog associated with fibromyalgia? about 7 years
Was Your Rate of Decline Fast? seemed like almost overnight, i was sick. stupid docs had me on all kinds of meds and not a one of them worked. now, I take nothing but herbs and supps
Have You Tried Avoiding Dietary Fluoride? you bet! from public water sources and bottled water
Remedies Tried: neurontin, zanax, anti depressents, pain meds, sleeping pills, all of which made me puke and crap myself for months getting off of them
Your Theories: mycoplasmisms. not detected in blood work.
Are We Missing Any Important Questions? the physcologiacal part of the whole thing

 

08/25/2008
Name: kristi
City: springfield
State/Country: ma
Your Sex: female
Where Were You Born? springfield ma
Where Do You Live Now? springfield ma
How Long Have You Lived There? 9 years
Your Age? 31
How many years has it been since you developed your symptoms of fibromyalgia? 9 years
Your Age At Onset of Symptoms? 22
What is Your Line of Work? Still working? lab assistant , nope
Medical History: shingles three times, unicartia, pertussis,mono twice
Does Exercise Help? some aqua aerobics
What Were Your First Symptoms? a flare up that lasted about 3 weeks
What Are Your Current Symptoms? complete body ache tiredness lack of memory depression supressed immune systom
Did You Ever Have A Long Lasting Virus? yes
Any Military Service? no
Chemical or Pesticide Exposure? always chemicals
How Has Fibro Affected Your Life? totally
What Makes Symptoms Worse? weather, stress, overdoing it
What Makes You Feel Better? rest and pain relievers antisycotics
Do Your Symptoms Include Brain Fog? yes terrible
How many years has it been since you developed the brain fog associated with fibromyalgia? 2 years
Was Your Rate of Decline Fast? yes antidepessents alot of different ones
Have You Tried Avoiding Dietary Fluoride? no???
Remedies Tried: lyrica, cymbalta neurontin, sleeping pills
Your Theories: this has consumed my life
Are We Missing Any Important Questions? has anybody ever had shingles

 

08/25/2008
Name: Kim
City: Hilo
State/Country: HI
Your Sex: Female
Where Were You Born? Honolulu, HI
Where Do You Live Now? Hilo, HI
How Long Have You Lived There? I lived here all my life, when I graduated high school I joined the military and left that was in 1997, I recently returned home in 2006 and have been here since
Your Age? 29
How many years has it been since you developed your symptoms of fibromyalgia? I started having symptoms about 5yrs ago
Your Age At Onset of Symptoms? 24
What is Your Line of Work? Still working? I am currently working in an office full time and I am in the Air National Guard part time.
Medical History: In 1998 I was hopitalized for vocal spasms. In 2000 I was given INH for tuberculosis. In 2002 I was hospitalized for a joint infection from a cat bite. In the hospital for 1 week and then on IV antibiotics for a month.2008 hospitalized for heat exhaustion.
Does Exercise Help? sometimes....other times it hurts bad enough where i wish I didnt exercise
What Were Your First Symptoms? joint pain. I thought I had arthritis cause it runs in my family. Went to the doctors and I was told my joints were fine
What Are Your Current Symptoms? Chronic neck, back, shoulders, hips and elbow joint pain. I have numbness in my hands and feet, with occassional swelling. At night I have shooting pains in my legs which keep me from sleeping. I cant sleep at night waking up every 2hrs or so. Im tired easily. There have been a few occassions where I had uncontollable shaking of my entire body.Some days I have this nerve twitch where my head kinda shakes back and forth. I also have chronic pelvic pain which I have been going to the doctors to find out why...no conclusions. I get frequent migraines, dizziness, nausea and ringing in the ears and sensitivity to light.
Did You Ever Have A Long Lasting Virus? The only thing I can think of is either the tuberculosis or the infection I got from the cat bite.
Any Military Service? I served on active duty from 1997-1999 and then the guard 2001-present
Chemical or Pesticide Exposure? The only chemicals I can think of is your common jet fuel, hydraulic oil and other chemicals pertaining to Aircrafts. I was and Aircraft mechanic..nOw I am in communications.
How Has Fibro Affected Your Life? It has greatly reduced my physical and mental abilities. I was once very active in sports and just exercising and weight training, as the years went by little aches and pains slowly limited me from doing what i loved. Now I am lucky to even have an hour of no pain and feeling almost normal. Most days are hard to function, especially when it comes to my military duty. I feel like I let my fellow troops down when I cant pull my weight, and yet they have no clue what I am going thru.
What Makes Symptoms Worse? Heavy activities, physical exertion...sometimes just doing too much for long hours makes me ache more. Carrying around my 50lbs pack during military duty doesnt help much. I wear out fast. I noticed sitting at my desk at work seems to make it worse and also riding in the car.
What Makes You Feel Better? laying on the floor, trying to relax
Do Your Symptoms Include Brain Fog? not sure...there are times when I lose my train of thought or just kinda spaz out.
How many years has it been since you developed the brain fog associated with fibromyalgia? I dont know
Was Your Rate of Decline Fast? no, but within the past 6 mo. I would say is when things really started getting bad. Before that it was just the occassional aches and pains that never seem to go away.
Have You Tried Avoiding Dietary Fluoride? no...I have fluroide toothpaste. I use to get fluoride from the dentist as a kid and I have spots on my teeth, which I was told was from too much fluoride. thats about it.
Remedies Tried: I have tried all kinds of pain medicines. tylenol, motrin, naproxen, vicodin, perocet, oxycodone, morphine, paxil, too many to remember
Your Theories: Fibromyalgia sucks and so does taking medication, so if anyone can find out how to fix it with out being on meds for the rest of your life that would be wonderful!!
Are We Missing Any Important Questions? Not that I can think of.

 

08/24/2008
Name: Lizzie
City: Brisbane
State/Country: Australia
Your Sex: F
Where Were You Born? England
Where Do You Live Now? Australia
How Long Have You Lived There? 17 years
Your Age? 50
How many years has it been since you developed your symptoms of fibromyalgia? 8
Your Age At Onset of Symptoms? 42
What is Your Line of Work? Still working? House sitting Graphic artist
Medical History: Very active childhood. Slight thyroid issue after coming off the pill. Basicall very fit, lived on small sailing boats - sailed oceans - very "physical" life
Does Exercise Help? Nothing helped when the pain was bad. Now I feel I'm more in the "recovery and rebuilding" stage it is very helpful. Best is yoga workout, then lymphasising and walking in the soft sand on the beach
What Were Your First Symptoms? Muscle pain, IBS, brian fog, bad sleep. Muscle pain was so bad I couldn't get out of bed on some days. Hurt to lift a china dinner plate.
What Are Your Current Symptoms? A bit of brain fog, minor IBS, occassional bad sleep, no pain, but need to rebuild more strength. It is going well.
Did You Ever Have A Long Lasting Virus? Not long lasting. Did have tick bite fever, and possibly undiagnosed Ross River fever
Any Military Service? no
Chemical or Pesticide Exposure? Heavy passive smoker as child. Fiberglass Studio chemicals Vaccinated as child
How Has Fibro Affected Your Life? It has made me so grateful for every moment that I'm not in pain! When my symptoms were bad I' really didn't know if I'd survive. It affected work, relationships, everything. I hope to make a complete recovery.
What Makes Symptoms Worse? NIGHTSHADES Chilli, tomato, potato, zucinni, eggplant, capsicum, peppers, anything with "spice" on the label. This is not an allergy - it is a cumulative buildup of toxin, that is not water soluable.
What Makes You Feel Better? NIGHTSHADE FREE DIET Magnesium MSM vegetarian, lots of raw food
Do Your Symptoms Include Brain Fog? Yes - but I'm much improved
How many years has it been since you developed the brain fog associated with fibromyalgia? 8
Was Your Rate of Decline Fast? Yes No drugs
Have You Tried Avoiding Dietary Fluoride? No
Remedies Tried: Magnapulse - excelllent iDetox (foot detox - I did 12 - got soooo much crap out including lots of metal) - excellent homeopathics - good
Your Theories: If nightshades were to be introduced as a food now, they probably wouldn't be allowed because of the solanine content. Nightshades are becoming an ever increasing part of our diet, and have a lot of good press, because of some of the good things in them. When I was growing up I had very few nightshades, some tomatoes and potatoes (kept very differently to today's supermarket oned). When I came to Oz my diet changed with the addition of chilli, and a lot more of the other nightshades. I think my body couldn't fully detox it and I ended up with solanine poisoning. It can take a year to get rid of the accumulated solanine toxin - it lodges in the pain receptors. There are lots more nightshades today with the populatity of curries, chilli dishes, tomato in pizzas and everything else. It is not an allergy, so you have to cut it out of your diet for a long time to notice a difference, and for the body to start to detox what's there. After a while I reintroduced chilli one evening - woke up the next morning with soooo much pain right through my muscles. Some people can detox the poison better than others. I think FMS could be a very big puzzle, with different contributing factors depending on the individual. For me soslanine poisoning seems to be the major one.
Are We Missing Any Important Questions? Your site is absolutely wonderful - thank you so much! It has given me some more ideas of things to try to make a really full recovery.

 

08/24/2008
Name: Susannah
City: San Juan
State/Country: Puerto Rico
Your Sex: Female
Where Were You Born? Puerto Rico
Where Do You Live Now? Puerto Rico
How Long Have You Lived There? 37 years
Your Age? 39
How many years has it been since you developed your symptoms of fibromyalgia? 8 years
Your Age At Onset of Symptoms? 32
What is Your Line of Work? Still working? Drama Teacher. Yes, still working
Medical History: Healthy until I was diagnosed with Eipstein Barr
Does Exercise Help? On ly stretching. If I try anything else I end up beinghurt.
What Were Your First Symptoms? Body rash. Then peiods of intense fatigue. Would fight to get out of bed. Was always sleepy.
What Are Your Current Symptoms? DPMS, intense lower and middle back, shoulder, neck, elbows and heel pains. Intense fatigue with short periods of energy. (2 good weeks, to bad weeks)Acid reflux, mental fog, lack of concentration, forgetfylness, total apathy.
Did You Ever Have A Long Lasting Virus? Other than Epstein barr can't remember any other.
Any Military Service? None
Chemical or Pesticide Exposure? Not that I know of.
How Has Fibro Affected Your Life? I cannot plan ahead of time because I never know how I'm going to fel the next day. I basically conserve energy on weekends to get through my job on weekdays. I cannot do the physical activities I used to. It has damaged my self-esteem.
What Makes Symptoms Worse? Strenous work, stress, lack of good sleep, exercise.
What Makes You Feel Better? Lie down and rest, meditate, warm water baths alternating with cold compresses. Sleeping, resting, meditating, thinking positive or trying to not htink at all.
Do Your Symptoms Include Brain Fog? Yes.
How many years has it been since you developed the brain fog associated with fibromyalgia? Mostly, this last year
Was Your Rate of Decline Fast? Yes, but I can't remember taking other drugs than those for sinus and asthma relief. I apparently have early glaucome because of the use of these pumps.
Have You Tried Avoiding Dietary Fluoride? No.Don't know what it is.
Remedies Tried: Acupuncture, quiropractor, physical therapy, massage therapy, Lirica, Zoloft, cymbalta, depacote, clonazepam, sanax.All of these helped for a while but then stopped. Lirica, though helped with my sleep, made me withhold water and gain weight.I've just begun treatment with Apple Cider Vinegar, viatamin D and Magnesium.I am still using clonazepam to deal with anxiety and cymbalta after finishing zoloft. Cymbalta gives me heartburn.
Your Theories: I do believe everything began with Epstein Barr. I believe this virus somehow has some effect on the neurotransmitters and the perception of pain. I noticed that physical therapy, massage and acupuncture caused more muscle inflammation as if alerting the body of external stress.After Epstein barr,followed chronic fatigue syndrome, then came all the different pains. The culmination was the appearance of Dysphoric pre-menstrual syndrome which drove me into depression and thoughts of death which really scared me.
Are We Missing Any Important Questions? Maybe dietary health, specific questions about lifestyle, eating habits, consumption of certain foods.

 

08/23/2008
Name: sherri
City: benson
State/Country: az
Your Sex: female
Where Were You Born? michigan
Where Do You Live Now? az
How Long Have You Lived There? 3months
Your Age? 47
How many years has it been since you developed your symptoms of fibromyalgia? late 30
Your Age At Onset of Symptoms? early 30
What is Your Line of Work? Still working? no
Medical History: no
Does Exercise Help? no hutrs
What Were Your First Symptoms? arms
What Are Your Current Symptoms? whole body and mind
Did You Ever Have A Long Lasting Virus? dont know
Any Military Service? no
Chemical or Pesticide Exposure? no
How Has Fibro Affected Your Life? 5 kids widow nothin but pain
What Makes Symptoms Worse? walkin depression cold hot
What Makes You Feel Better? nothin
Do Your Symptoms Include Brain Fog? yes
How many years has it been since you developed the brain fog associated with fibromyalgia? 7
Was Your Rate of Decline Fast? swoley
Have You Tried Avoiding Dietary Fluoride? dont know
Remedies Tried: fish oatmeal pain pills
Your Theories: i hate this stupid brain defution
Are We Missing Any Important Questions? no

 

08/21/2008
Name: Teresa
City: Visalia
State/Country: CA
Your Sex: female
Where Were You Born? Fresno, CA
Where Do You Live Now? Visalia, CA
How Long Have You Lived There? 15 years
Your Age? 51
How many years has it been since you developed your symptoms of fibromyalgia? decades
Your Age At Onset of Symptoms? 8?
What is Your Line of Work? Still working? No. Quit working due to death of family member to care for mom. Symptoms increased rapidly.
Medical History: Injuries,neck surgeries, more injuries, misdiagnoses.
Does Exercise Help? Not at present.
What Were Your First Symptoms? Neck pain, then numbness in hands and down arms,migraine
What Are Your Current Symptoms? Currently I am recooperating from 8 wk. treatment that has GREATLY improved my severe FM symptoms. It's been a week now since my last treatment and I feel better than I have in 30 years.
Did You Ever Have A Long Lasting Virus? Mono at age 16. Undiagnosed virus and hospitalization in 1995.
Any Military Service? no
Chemical or Pesticide Exposure? Unknown
How Has Fibro Affected Your Life? My entire life would have been different if I had been able to function in school, keep an emotional balance, have energy for the many things I dreamed of doing, save money and time on all the pain, made wiser decisions with a clear mind, etc...
What Makes Symptoms Worse? Just about all emotional and physical stress, illness, surgery, meds, lack of sleep
What Makes You Feel Better? At the present time I can rest and recover from being tired. My pain is all but gone. I had life changing results with treatments recently.
Do Your Symptoms Include Brain Fog? That was the worst in the last year before my treatments. Lost my vocabulary, communication skills, typing skills, very teary and emotional because of the fog. THAT WAS THE FIRST SYMPTOM TO LEAVE WITH TREATMENT
How many years has it been since you developed the brain fog associated with fibromyalgia? 5 or so.
Was Your Rate of Decline Fast? I went from a state of bad to the worst very quickly in the last 8 to 12 months. Early on I was on Prozac..the rest I'd have to look up.
Have You Tried Avoiding Dietary Fluoride? No
Remedies Tried: OVC drugs,Prozac,Effexor Cymbalta,Topomax,Strattera,Soma,Temezapam,Vicodin,Fiorcet,other pain stuff. Most recently Dr. Paul Whitcomb's method
Your Theories: Neck injuries have caused the menenges surrounding the brain and leading the path to the spine to be pinched off creating a misfiring of the central nervous system. This is not always brought on by neck injury but also by predisposition in the spine at the opening at the base of the skull to create a pressing and pinching. Brain won't stop firing pain and strange signals to the body especially in areas of past injury and stress.
Are We Missing Any Important Questions? Any injuries specifically involving the neck or head? Did symptoms begin or worsen with a surgery or childbirth?

 

08/21/2008
Name: Dottie
City: Harrisburg
State/Country: PA
Your Sex: female
Where Were You Born? PA
Where Do You Live Now? PA
How Long Have You Lived There? 20 years
Your Age? 67
How many years has it been since you developed your symptoms of fibromyalgia? several
Your Age At Onset of Symptoms? 35
What is Your Line of Work? Still working? Office Yes
Medical History: To much to list
Does Exercise Help? Some- Stretching
What Were Your First Symptoms? Dizziness & allergies
What Are Your Current Symptoms? Most all of them
Did You Ever Have A Long Lasting Virus? several weeks
Any Military Service? No
Chemical or Pesticide Exposure? Asbestos
How Has Fibro Affected Your Life? I cannot do what I need to get done & tire easily
What Makes Symptoms Worse? ??
What Makes You Feel Better? Fish oil tablets & Reiki
Do Your Symptoms Include Brain Fog? sometimes
How many years has it been since you developed the brain fog associated with fibromyalgia? This year
Was Your Rate of Decline Fast? Last year it seemed to get real bad. Antibotics
Have You Tried Avoiding Dietary Fluoride? no
Remedies Tried: Fish Oil tablets & Reiki & Boswella for pain
Your Theories: They help
Are We Missing Any Important Questions? Have you been diagnosed by a dr & YES I recently have

 

08/19/2008
Name: Dorothy
City: Otsego
State/Country: MI
Your Sex: Femaile
Where Were You Born? Holland Michigan
Where Do You Live Now? Otsego Mic
How Long Have You Lived There? 8 years
Your Age? 52
How many years has it been since you developed your symptoms of fibromyalgia? 17
Your Age At Onset of Symptoms? 33
What is Your Line of Work? Still working? not working. secretary
Medical History: Lupus, Guillaen Barre Syndrome, Diabetes, Hashimotos, PCOS, High Blood Pressure, High Cholesterol, PTSD, Anxiety, Depression, Sleep APenea, Obesity
Does Exercise Help? Swimming
What Were Your First Symptoms? fatigue and pain all over
What Are Your Current Symptoms? pain all over. Brain fog, fatigue, numbness, sleeplessness, anxiety.
Did You Ever Have A Long Lasting Virus? Yes, Mono
Any Military Service? none
Chemical or Pesticide Exposure? yes, sawdust, lead paint, asbestos, varnish,
How Has Fibro Affected Your Life? Some days debilitating, can't go out at all. Earlier on had better control of symptoms. No longer have health insurance which I believe changes quality of care
What Makes Symptoms Worse? stress, lifting, over doing. I have to pace self. One day busy, next day relax
What Makes You Feel Better? Rest. Prayer, meditation. Rocking in the rocking chair.
Do Your Symptoms Include Brain Fog? YES, horrible
How many years has it been since you developed the brain fog associated with fibromyalgia? Seemed to start right away.
Was Your Rate of Decline Fast? I had my second child, 3rd pregnancy. About 2 months after he was born, symptoms started
Have You Tried Avoiding Dietary Fluoride? no
Remedies Tried: pain meds, antidepressants.
Your Theories: I believe the Guillaen Barre has something to do with it. Allergies, which developed when I was pregnant, exposure to "toxic buildings" rug backing, etc.
Are We Missing Any Important Questions? Where to find practioners would be helpful information

 

08/19/2008
Name: timothy
City: DeSoto
State/Country: Mo
Your Sex: Male
Where Were You Born? Wa
Where Do You Live Now? Mo
How Long Have You Lived There? 20+years
Your Age? 52
How many years has it been since you developed your symptoms of fibromyalgia? 12
Your Age At Onset of Symptoms? 40
What is Your Line of Work? Still working? Retired 2 yrs, computer tech was field worked
Medical History: Severe head injury 76 seizure disorder(gran mal)from head injury incurred in service, Pneumonia (hospitalization required) 6mo to 1 yr prior to onset of symptoms.
Does Exercise Help? I have tried walking, weights, swimming, walking. For me they compounded pain issue and provided little or no relief
What Were Your First Symptoms? shooting pain, fatigue, skin rash (more noticeable with sun exposure)
What Are Your Current Symptoms? Occasional flare-ups which include pain, fatigue, skin rash, sluggishness. When "flare ups occur I take Co-enzyme co-Q10 300 mg per day until flare resides then quit taking supplement. For me it does help provide extended relief. when flare -ups occur symptoms include pain, shooting pains, fatigue, lethargy, skin rash may or may not be present.
Did You Ever Have A Long Lasting Virus? I was diagnosed with a unknown blood disorder in mid 70s. Lymph node biopsy performed, nothing found. This was long before Fibro symptoms occurred. Did have severe reaction to smallpox immunization, subsequent vaccination in navy did not react. Had multiple viruses in my youth, including repeated ear infections (tonsils got removed). No other long virus stints remembered.
Any Military Service? 73-76 US Navy
Chemical or Pesticide Exposure? Agent Orange, face paint, suntan lotion acetone, stodard cleaner, dry cleaning fluids
How Has Fibro Affected Your Life? Initial tailspin, Dr discussed medical retirement.I didn't couldn't afford it. Did various exercise routines didn't help. Did have some depression (funk) but was more related to constant pain issue than psychological issues. was prescribed seritonin reuptake inhibitor(Prozoc (didn't help and was discontinued in time)
What Makes Symptoms Worse? extended (over days) of hard labor, Multiple long days without proper sleep. remaining sedentary for extended periods.
What Makes You Feel Better? When Fibro pain symptoms return on occasion I take 300 mg per day of Co Q-10 usually relief within 3 to 4 days. Hyperventilation provides short term immediate relief. Especially useful for shooting pain issues.
Do Your Symptoms Include Brain Fog? yes, but unsure if directly related to fibro but very easily could if oxygenation issue is related.
How many years has it been since you developed the brain fog associated with fibromyalgia? unsure, until now never related the symptoms. Memory issues do exist.
Was Your Rate of Decline Fast? yes, none drugs remembered, did have a bout of pneumonia (hospitalized for a week, out of work for 1 month recovery, ICU 3 days) 6 mo before initial onset of symptoms. waited long period (several years before going to Dr with issue)Drugs IV administered were not of the cycalyne family (I am allergic). If memory serves me correctly drugs were in the cyllian family of drugs. Not sure of specific one. Also was given cocaine via IV as well as saline. I was also given some sort of drug now unremembered via breathing therapy.
Have You Tried Avoiding Dietary Fluoride? I have no dietary exposure nor do I remember any exposure via water etc.
Remedies Tried: exercise. DR prescribed various pain killers which provided only moderate relief from shooting pain symptoms aches still remained. CO-q10 has provided only relief. HAve found all co-q10 is not the same. MEdical pill or dried variety has never "seemed" to work. Have found gel-cap version of Q-10 works. I have no idea why this is as the pill variety prescribed by Dr "should" have been more effective. The Cheaper NAture made as well as several other of the gel-caps seem, for me, to be effective.
Your Theories: DR in U of AL found PET scans indicated low oxygenation of hypothalamus region of brain detected via PET scans. Interestingly enough this is the region of the brain that was damaged from a severe head injury from Navy service. This area controls autonomic nervous function in the body which might explain a variety of fibro symptoms. Symptom onset however did not occur for 18 years after service discharge.
Are We Missing Any Important Questions? yes weight, blood pressure could be useful information that may have a relationship.

 

08/19/2008
Name: Dianne
City: Saskatchewan
State/Country: Canada
Your Sex: F
Where Were You Born? Saskatchewan
Where Do You Live Now? Saskatchewan
How Long Have You Lived There? all my life except for 3 years
Your Age? 50
How many years has it been since you developed your symptoms of fibromyalgia? eight
Your Age At Onset of Symptoms? 42
What is Your Line of Work? Still working? University professor/artist Not currently working but I want to be
Medical History: nothing of significance - penicillin allergy
Does Exercise Help? yes. Moderate and careful
What Were Your First Symptoms? not sure - they occured mostly around time and together, i just didn't know that it was fibromyalgia until a few months ago
What Are Your Current Symptoms? -chronic fatigue -acid reflux -irritable bowel -irritable bladder -severe tendon cramps -pain at tendon locations throughout body but mostly in legs and feet -anorexia -nauseau -sweating especially at night -hair loss -persistent athlete's foot, ezema, and toenail fungal infections -small cysts on feet and palms of hands and various other locations -some memory loss (slight) -difficulty with placement of words and difficulty in word retrieval, sometimes misusing words unintentionally -reactions to chemicals, ill when exposed, such as showering in chemically treated water, especially flouridated -hypersensitivity to chemical tastes in food
Did You Ever Have A Long Lasting Virus? no
Any Military Service? no
Chemical or Pesticide Exposure? yes Darkroom chemicals and paint and adhesive fumes
How Has Fibro Affected Your Life? It has interfered in my career and financial situation and has forced a dramatic change in my lifestyle.
What Makes Symptoms Worse? Exposure to chemicals and over exercise
What Makes You Feel Better? -fresh air -a good bed -a proper diet -rest and low stress -my children and family
Do Your Symptoms Include Brain Fog? I am not sure...I function at a high level of intellectual capacity but have difficulty in maintaining it for extended periods of time
How many years has it been since you developed the brain fog associated with fibromyalgia?
Was Your Rate of Decline Fast? Yes, definitely.
Have You Tried Avoiding Dietary Fluoride? Yes. I have went on a flouride and all chemical free diet on June 1st of this year, 2008. I avoid all water, if possible, that has been treated. I also avoid all gluten products. This diet change has improved my life coniderably but I am left with a very difficult time maintaining my weight which is less than what it was when I left the hospital eight years ago.Frankly, I am scared to get on my scale right now, I am afraid that I am well below 130 pounds.
Remedies Tried: Since my hospital stay, I use cannabis to help with my appetite and sleeping. The tendon cramping and tendon injuries have become worse over time and for the last three years, I have used it constantly to prevent my legs from cramping in the night. I have started using my own medicinal plants that I gather in the wild to alleviate my symptoms and hopefully repair some of the damage that has occurred.
Your Theories: I believe that I was unethically entered into a clinical drug trial for Ciprofloxacin when I was in the hospital in the spring of 2000. I had undergone a vaginal hysterectomy for fibroid cysts and experienced a hemorrhage from an artery tie coming off within hours of the surgery. I was immediately put back in the operating room. I was given several pints of blood to replace the litre and a half of blood that was in my abdominal cavity. I was put on oxygen and morphine. I developed symptoms of a post operative infection within a short time (a day or two?) and was administered Vancomycin. When my symptoms did not alleviate, I was changed to Gentamicin and almost immediately felt better, even being able to have my hair washed and walk around. I only received one dose intravenously when I was changed to Cipro by the microbiologist and the pharmacist. I asked not to have my medication changed and the RN on duty objected as well. When she objected, she was taken out of the room and appeared upset later, refusing to discuss my medication with me. My condition immediately worsened. I began having hallucinations, which I thought were connected to the morphine I was on. I became delusional and my fever heightened. I was unable to eat and suffered extreme vomitting and diarrhea and intense pain. During this time, blood tests were taken every few hours, until my arms could not handle anymore at which time the blood tests were switched to my ankles. I continued to worsen for about a week at which time the head surgeon of the hospital became involved. I was given several xrays over the course of this time and an ultrasound.I was then given a cat scan, another procedure (can't remember the name) to examine my bowel, and then had a syringe of fluid drawn from my abdomen. When the lab technican drew the sample, he became very alarmed and the doctor was called quickly to his side, I overheard him telling the doctor that there was blood in the sample. The doctor shushed him quickly and another syringe was drawn. The next morning, the surgeon wanted me to give consent for another cat scan which I refused. Instead, I agreed to another ultrasound. The nurse administering it was clearly agitated when she saw the screen and averted it so I couldn't see. the surgeon quickly decided that I would be operated on immediately and he told me that he was concerned that my liver might be absessing. I underwent a third surgery and emerged from it with two drain tubes in my abdomen. The surgeon told me that he had cleaned my abdominal cavity, flushing it and had checked for any internal bleeding or nicks. He said that my abdomen had been full of a fluid that he had never seen before. My condition began to improve over the next week until my kidneys began to fail. I was given albumin intravenously until my kidneys started to function again. At this point, I checked myself out of the hospital. i was still not eating and had dropped from 171 pounds to 135 pounds. i went home with oral Cipro and instructions to finsh the doses. When the dose was over, about a week later, I was still not eating or sleeping and resorted to the use of cannabis to resume my appetite and sleep. Later, after gynocolgists and having her review my files, I found out that a lot the information I had been given about the types of infection I had were differnt than what I had been told by the pharmacist, the microbioligist and the gynocologist. When I had been inquiring and putting pressure on the pharmacist as to what kind of infection I had, i specfically asked him if I had staph infection and he denied it yet the surgery report listed it and e coli and another bacteria. As well, the gyno came into my room the next day and informed me, (this is three weeks after my first surgery for the hysterectomy) that I had an existing urinary infection when I had been admitted. I do not believe that to be true as I had pre op tests done and it wasn't mentioned then. Several other points that I had inquired to the doctors about during my hospital stay were also exposed to be different than what I had been told, including the fact that one of my lungs had collapsed during the second surgery. Since that time, every doctor I have been to does not acknowledge the connection between my hospital stay and the symptoms that I have displayed ever since. During the last eight years, I have been given Cipro twice for tooth infections and each time, I developed severe irritable bowel symptoms, much worse than normal.
Are We Missing Any Important Questions? I don't think so. :)

 

08/18/2008
Name: Paula
City: St. John's
State/Country: Canada
Your Sex: female
Where Were You Born? Ontario
Where Do You Live Now? Newfoundland and Labrador
How Long Have You Lived There? 4 months
Your Age? 36
How many years has it been since you developed your symptoms of fibromyalgia? 17 years
Your Age At Onset of Symptoms? 19
What is Your Line of Work? Still working? librarian. yes
Medical History: leukemia
Does Exercise Help? walking.
What Were Your First Symptoms? fatigue. brain fog.
What Are Your Current Symptoms? chronic pain, stiffness, fatigue, brain fog, anxiety, memory loss, weight gain, infections, irritability, low pain threshold
Did You Ever Have A Long Lasting Virus? don't recall
Any Military Service? no
Chemical or Pesticide Exposure? 2.5 years of chemotherapy treatments
How Has Fibro Affected Your Life? destroyed it. ruined previous career, almost ruined new career, destroyed family relationships, has severely restricted my social life
What Makes Symptoms Worse? not taking supplements, exertion, stress
What Makes You Feel Better? supplements, good people and healthy food. light exercise
Do Your Symptoms Include Brain Fog? yes
How many years has it been since you developed the brain fog associated with fibromyalgia? 16 years
Was Your Rate of Decline Fast? no
Have You Tried Avoiding Dietary Fluoride? no
Remedies Tried: antidepressants. wheat free diet. vitamin supplements. D-Ribose. Aniracetam (for brain fog).
Your Theories: thanks for asking. I'll be taking care of the fluoride ASAP.
Are We Missing Any Important Questions? What is your experience with the medical system?

 

08/16/2008
Name: Edith
City: Albany
State/Country: Oregon
Your Sex: female
Where Were You Born? Colville, Washington
Where Do You Live Now? Albany, Oregon
How Long Have You Lived There? 12 years
Your Age? 62
How many years has it been since you developed your symptoms of fibromyalgia? 23 years
Your Age At Onset of Symptoms? 39
What is Your Line of Work? Still working? child care no
Medical History:
Does Exercise Help? no
What Were Your First Symptoms? pain
What Are Your Current Symptoms? pain, lack of energy, brain fog, IBS, lack of sleep, short term and long term memory problems, exhaustion, headache. I know there is more, but brain fog is causing problems now.
Did You Ever Have A Long Lasting Virus? no
Any Military Service? no
Chemical or Pesticide Exposure? drank fluoride water for over 20 years
How Has Fibro Affected Your Life? I can't work, can't clean my house, can't run, can't do much of anything.
What Makes Symptoms Worse? sugar, activity, inactivity, heat, cold.
What Makes You Feel Better? kefir
Do Your Symptoms Include Brain Fog? yes
How many years has it been since you developed the brain fog associated with fibromyalgia? I have no idea. A long time ago.
Was Your Rate of Decline Fast? It was a gradual decline.
Have You Tried Avoiding Dietary Fluoride? No, I just found it it could be the problem. I need to find out what has fluoride so I can avoid it.
Remedies Tried: too many prescriptions to remember.
Your Theories: I think it involves the putirary gland (gland in brain that controls everything) (I can't spell like I used to be able too.) p
Are We Missing Any Important Questions?

 

08/13/2008
Name: Amanda
City: Greenville
State/Country: SC
Your Sex: Female
Where Were You Born? Greenville
Where Do You Live Now? Greenville
How Long Have You Lived There? 29yrs
Your Age? 29
How many years has it been since you developed your symptoms of fibromyalgia? 5
Your Age At Onset of Symptoms? 24
What is Your Line of Work? Still working? Disabled, was in Customer Service
Medical History: Hypotyroidism, overwieght, ovarian cysts, low FSH, high white bloodcell count, high c-reactive protein, and anllergies.
Does Exercise Help? Sometimes stretches
What Were Your First Symptoms? stiffness and frequent headaches
What Are Your Current Symptoms? stiffness, all over pain(flu like) crippling headaches, insomneia, dizziness, confusion, memeory loss, severe fatigue, depression,etc
Did You Ever Have A Long Lasting Virus? Not that I recall
Any Military Service? No
Chemical or Pesticide Exposure? yes, from birth till 10 years old. Our well water was contaminated with 1,1-dichloroethene, trichloroethene,tetrachloroethene, and beryllium
How Has Fibro Affected Your Life? I can no longer enjoy my once active lifestyle due to pain and fatigue. I am unable to work and that makes for more stress with limited money to pay bills, etc.
What Makes Symptoms Worse? stress,reular household chores, sleeping too long, sometimes nothing its just real bad on its own
What Makes You Feel Better? water and sometimes stretching
Do Your Symptoms Include Brain Fog? YES
How many years has it been since you developed the brain fog associated with fibromyalgia? 2
Was Your Rate of Decline Fast? It happened very quickly...right after I got married. I had ovarian surgery to remove cysts. I do not recall what pain meds that I was on at the time
Have You Tried Avoiding Dietary Fluoride? I am not sure what that is...so no.
Remedies Tried: All prescriptions meds, and now I am taking vitamins. The meds make me feel better that day but worse the next.
Your Theories: not that I can think of
Are We Missing Any Important Questions?

 

08/13/2008
Name: DEBRA
City: NEW TAZEWELL
State/Country: TENNESSEE
Your Sex: FEMALE
Where Were You Born? TENNESSEE
Where Do You Live Now? TENNESSEE
How Long Have You Lived There? ALL MY LIFE
Your Age? 48
How many years has it been since you developed your symptoms of fibromyalgia? 8
Your Age At Onset of Symptoms? 39 OR 40
What is Your Line of Work? Still working? NO
Medical History: HYSTERECTOMY AT AGE 27
Does Exercise Help? NOPE
What Were Your First Symptoms? NUMBNESS IN LEGS, SEVERE MUSCLE AND JOINT PAIN TENDER SPOTS
What Are Your Current Symptoms? CANT WALK/CANT SLEEP/CONSTANT SEVERE PAIN IN SHOULDERS/NECK/LEGS/BACK BRAIN FOG AND MANY MORE
Did You Ever Have A Long Lasting Virus? FLU TWICE IN A ROW WITHIN 2 WEEKS OF ONE ANOTHER
Any Military Service? NONE
Chemical or Pesticide Exposure? POSSIBLE
How Has Fibro Affected Your Life? WENT FROM ACTIVE/LEAN TO FAT AND INMOBILE/DEPRESSED NO LIFE
What Makes Symptoms Worse? LAYING DOWN/ I SLEEP ONLY 3 HRS IN MY RECLINER/ WALKING/STANDING LONG PERIODS
What Makes You Feel Better? NOTHING/ TAKE CYMBALTA HELPS TINY BIT
Do Your Symptoms Include Brain Fog? YES BAD
How many years has it been since you developed the brain fog associated with fibromyalgia? 6
Was Your Rate of Decline Fast? YES ONE DAY I WAS ACTIVE THEN IT SEEMS I WAS 90 YEARS OLD/ I TOOK NEURONTIN BEFORE MY SYMPTOMS BECAME SO SEVERE
Have You Tried Avoiding Dietary Fluoride? NO
Remedies Tried: NO REMIDIES/ MEDICATIONS FOR PAIN INCLUDE HYDROCODONE/NEURONTIN/OXYCONTIN/CYMBALTA/ YOU NAME IT IVE TAKEN IT. HATE IT ALL DONT TAKE NOTHING NOW BUT THE CYMBALTA 60 MG AND WANT TO GET OFF IT BUT I TRIED FOR A MONTH AND I WAS CONFINED TO MY RECLINER FROM SEVERE PAIN HELPS SOME!!
Your Theories: I WANT TO FIND SOMETHING THAT IS NOT PRESCRIPTION HATE ALL THAT CHEMICAL DEPENDENCY CRAP/ LOOKING FOR REMEDIES OTHER THAN THE PILLS
Are We Missing Any Important Questions? NOPE

 

08/12/2008
Name: Wendy
City: Garland
State/Country: Texas
Your Sex: Female
Where Were You Born? Providence
Where Do You Live Now? Texas
How Long Have You Lived There? 5 months
Your Age? 30
How many years has it been since you developed your symptoms of fibromyalgia? 25 or 26 yrs.
Your Age At Onset of Symptoms? 4 yrs old or 5 yrs old beginning symptoms
What is Your Line of Work? Still working? PBM industry
Medical History: no
Does Exercise Help? No, makes it worse.
What Were Your First Symptoms? constipation joint pain tired
What Are Your Current Symptoms? tired brain fog pain indigestion nausea headaches imsomnia sensitivity to light
Did You Ever Have A Long Lasting Virus? no
Any Military Service? n/a
Chemical or Pesticide Exposure? not that I know of
How Has Fibro Affected Your Life? Makes me depressed not to be able to enjoy regular daily activities and focue on my job
What Makes Symptoms Worse? excercising, physical activity,
What Makes You Feel Better? laying down in a cold and dark room
Do Your Symptoms Include Brain Fog? yes
How many years has it been since you developed the brain fog associated with fibromyalgia? 2 yrs
Was Your Rate of Decline Fast? it has been progressive, but the last year is has gotten worse. I was given muscle relaxants, high blood pressure meds for my random palpitation
Have You Tried Avoiding Dietary Fluoride? no
Remedies Tried: I have tried various natural summplements and Alli weight loss med.
Your Theories:
Are We Missing Any Important Questions?

 

08/12/2008
Name: Heather
City: Mabelvale
State/Country: ar
Your Sex: F
Where Were You Born? Little rock, arkansas
Where Do You Live Now? mabelkvale, ar
How Long Have You Lived There? 5 years
Your Age? 38
How many years has it been since you developed your symptoms of fibromyalgia? 16
Your Age At Onset of Symptoms? 22
What is Your Line of Work? Still working? none specific, no, on SSI disability
Medical History: i was pretty healthy until i developed finro
Does Exercise Help? sometimes, walking, but i also have osteoarthritis thru out my body
What Were Your First Symptoms? fatigue, pain, headaches
What Are Your Current Symptoms? fatigue, pain, headaches, sleep disturbances, lethargy, eating disturbances, panic, difficulty breathing
Did You Ever Have A Long Lasting Virus? yes, one that developed into pneumonia, i was sick for 2 months, after that is when the symptoms started
Any Military Service? no
Chemical or Pesticide Exposure? not that i know of
How Has Fibro Affected Your Life? difficult to care for my home, cant work, cant be counted on to be able to do what i promised sometimes
What Makes Symptoms Worse? heat, humidity, spring allergies
What Makes You Feel Better? lortab, sadly that is teh only relief i get and its just from pain, for a period, when i wa sput on lamictal, i had some great relief, but, it stopped
Do Your Symptoms Include Brain Fog? yes
How many years has it been since you developed the brain fog associated with fibromyalgia? at least 10
Was Your Rate of Decline Fast? yes, just antibiotics
Have You Tried Avoiding Dietary Fluoride? no
Remedies Tried: my doctor has me on pain maintenance with lortab and meloxicam
Your Theories: i think the pneumonia/virus triggered it, and i think possibly its related to what also causes my bipolar since the lamictal helped it for about a year
Are We Missing Any Important Questions? what about headaches?

 

08/11/2008
Name: fran
City: avondale
State/Country: az
Your Sex: female
Where Were You Born? phoenix
Where Do You Live Now? avondale
How Long Have You Lived There? 20
Your Age? 31
How many years has it been since you developed your symptoms of fibromyalgia? 6
Your Age At Onset of Symptoms? 25
What is Your Line of Work? Still working? don't work`
Medical History: recurrent UTI's and depression.
Does Exercise Help? slight walking
What Were Your First Symptoms? felt like i was in a car accident. My neck and whole body ached.
What Are Your Current Symptoms? achy, tired, joints ache, bowel problems, can't lift up arms too long, can't stand for too long feet start to swell, depression, numbness in legs and in a fog. Unrefreshed i feel like i just waked up.
Did You Ever Have A Long Lasting Virus? I had a bad cold once and then i started getting the full blown symptoms of fibro.
Any Military Service? none
Chemical or Pesticide Exposure? none
How Has Fibro Affected Your Life? I don't work, not married, lives with parents, can't go to school, can't clean home, no sex life, depressed alot of the time, people in general not understanding.
What Makes Symptoms Worse? not sure
What Makes You Feel Better? a hug,bath, slight walking.
Do Your Symptoms Include Brain Fog? i think so, i feel like i am out of it alot of the times.
How many years has it been since you developed the brain fog associated with fibromyalgia? a year into i guess
Was Your Rate of Decline Fast? yes, they gave me muscle relaxants and that did't work, and zoloft, but it just made feel like crap and my face went numb. I also took sulfmeth for bladder infections.
Have You Tried Avoiding Dietary Fluoride? no i don't even know what that is.
Remedies Tried: I have tried calcium and magnesium powder formula from t.v.for fibro. Also herb teas for the constant urinary problem.
Your Theories: I hope they find a cure for my situation. I am ready to live life now. I feel like an outcast. My house is dirty because i don't have the drive and strenghy to that.
Are We Missing Any Important Questions? Do you have urinary or diabetes because i hear that can cause fatigue.

 

08/11/2008
Name: Joy
City: Fresno
State/Country: Ca
Your Sex: Female
Where Were You Born? Oakland Ca
Where Do You Live Now? Fresno Ca
How Long Have You Lived There? 2yrs
Your Age? 65
How many years has it been since you developed your symptoms of fibromyalgia? 14 yrs
Your Age At Onset of Symptoms? 51
What is Your Line of Work? Still working? Homemaker Retired
Medical History: Hysteroectomy, Heria, Gallbladder
Does Exercise Help? No
What Were Your First Symptoms? Flu like
What Are Your Current Symptoms? painful muscles and joints
Did You Ever Have A Long Lasting Virus? yes
Any Military Service? 0
Chemical or Pesticide Exposure? no
How Has Fibro Affected Your Life? stop me from moving my body much
What Makes Symptoms Worse? movement and sitting or lying to long
What Makes You Feel Better? nothing
Do Your Symptoms Include Brain Fog? they did
How many years has it been since you developed the brain fog associated with fibromyalgia? 11 yrs
Was Your Rate of Decline Fast? no, good health to extreme pain and weakness
Have You Tried Avoiding Dietary Fluoride? no
Remedies Tried: prozac and developed side effects and reactions to any other prescription a doctor could recommend
Your Theories: Onset was during a rather tramatci time in my life
Are We Missing Any Important Questions? Currently doing Reiki

 

08/10/2008
Name: Crystal
City: pomeroy
State/Country: Ohio
Your Sex: female
Where Were You Born? West virginia
Where Do You Live Now? Ohio
How Long Have You Lived There? 11 years
Your Age? 30
How many years has it been since you developed your symptoms of fibromyalgia? 9 years
Your Age At Onset of Symptoms? 21
What is Your Line of Work? Still working? Child Care provider, and a secretary. No I have not worked in 4 years
Medical History: thyroid problem, I triglycerides, and cholesterol problems [ not taking meds for any of it.
Does Exercise Help? walking, and some Yoga are the only things I can handle. It does help for a while.
What Were Your First Symptoms? depression, and my left knee started having a lot of pain, to which the Doctors did an MRI found - nothing wrong- and just said it was cause I was Obese.
What Are Your Current Symptoms? Severe sometimes debilitating back pain, knee pain, pain in all my joints, fatigue, digestive problems, headaches, eyes not focusing easily, shoulder pain, neck pain, tired but don't sleep well, insomnia, when I do sleep I don't want to wake up, even after sleeping for 12 hours or more I am still tired, periods irregular, infertility, depression, irritablity, muscle spasms, general ache like a flu
Did You Ever Have A Long Lasting Virus? no
Any Military Service? no
Chemical or Pesticide Exposure? just household cleaners
How Has Fibro Affected Your Life? I can't make plans, I can't clean my house regularly, friends quit calling, family don't understand, Drs around here don't believe me, and I feel alone, and miserable about 90% of the time.
What Makes Symptoms Worse? weather changes, Stress, to many milk products, sugar, caffeine,
What Makes You Feel Better? stretching, yoga, watching what I eat, reducing stress
Do Your Symptoms Include Brain Fog? yes
How many years has it been since you developed the brain fog associated with fibromyalgia? 5 years
Was Your Rate of Decline Fast? no, I can't recall taking any medications before I started having pain. I wasn't even on my depression medication yet.
Have You Tried Avoiding Dietary Fluoride? I have never heard of dietary fluoride...
Remedies Tried: I take Mobic, Ibprofen 800mg, tylenol arthritis, alternating use. Muscle relaxers only in case of severe flare. Paxil, and lamictal for the depression
Your Theories: I wish I had a theory! All I want is 1 day too not experience any of the symptoms I have, and to do what ever I want to do with out Pain. If that is all I can have... Ultimately I want to live pain free. Until that day gets here, Just need some way to better manage the pain.
Are We Missing Any Important Questions?

 

08/10/2008
Name: Pamela
City: Tempe
State/Country: AZ
Your Sex: female
Where Were You Born? Dayton, Ohio
Where Do You Live Now? Tempe, Arizona
How Long Have You Lived There? six years- I grew up in Kansas City, MO.
Your Age? 21
How many years has it been since you developed your symptoms of fibromyalgia? six
Your Age At Onset of Symptoms? 15
What is Your Line of Work? Still working? courtesy clerk at a grocery store- I just started. Yes, but I change jobs a lot. I have never kept a job for more than four months.
Medical History: Just some lung and throat diseases that went away and depression
Does Exercise Help? Sometimes. Walking and stretching.
What Were Your First Symptoms? back pain
What Are Your Current Symptoms? Pain in my entire body, severe fatigue, depression, difficulty with everyday activities
Did You Ever Have A Long Lasting Virus? not that doctors have found
Any Military Service? no
Chemical or Pesticide Exposure? Isn't everyone exposed to a lot of chemicals? not at a job or anything like that. I was born near some factories.
How Has Fibro Affected Your Life? It has made it pretty much impossible for me to keep a job. It makes normal activities difficult. It is extremely difficult to get out of bed. I have lost boyfriends and friends because of it.
What Makes Symptoms Worse? heat, extreme physical activity, alcohol
What Makes You Feel Better? eating and stretching
Do Your Symptoms Include Brain Fog? yes
How many years has it been since you developed the brain fog associated with fibromyalgia? about five but it gets worse every year
Was Your Rate of Decline Fast? yes- painkillers, antibiotics, and treatments for my lungs and throat
Have You Tried Avoiding Dietary Fluoride? I have tried to avoid it from all the sources I know of but it is very difficult to avoid when you don't have money.
Remedies Tried: My doctor tried putting me on antidepressants which seemed to make it worse. I quickly stopped taking them. That's it. My doctor wouldn't even write down my diagnosis and I usually just got lectures about how I need to go to work.
Your Theories: Many theories- sleep problems, viruses, and flouride poisoning are the best ones I've heard. Also think about blood sugar problems.
Are We Missing Any Important Questions? Yes. Ask about sleep conditions, eating habits, and possible diseases.

 

08/09/2008
Name: Diana
City: Aberdeen
State/Country: south dakota
Your Sex: female
Where Were You Born? Hastings Ne
Where Do You Live Now? Aberdeen Sd
How Long Have You Lived There? 22 yrs
Your Age? 50
How many years has it been since you developed your symptoms of fibromyalgia? 5 yrs
Your Age At Onset of Symptoms? 45
What is Your Line of Work? Still working? car sales
Medical History: tubal,gallbladder,severe breast infection
Does Exercise Help? some No weights!
What Were Your First Symptoms? muscle tenderness
What Are Your Current Symptoms? PAIN! Stiff from head to toe. Neck very bad,left leg aches.Gerd.Moody!
Did You Ever Have A Long Lasting Virus? just a breast infection that took one year and surgery to fix
Any Military Service? no
Chemical or Pesticide Exposure? former hairdresser and smoking
How Has Fibro Affected Your Life? I refuse to let this crap win but it's getting harder i just want to lay in bed all day but i can't! I feel everyone thinks I'm full of it cause' I look just fine.
What Makes Symptoms Worse? stress and cold weather
What Makes You Feel Better? nothing
Do Your Symptoms Include Brain Fog? More and more each month scary. My father has alzemheirs I first thought I was getting it.
How many years has it been since you developed the brain fog associated with fibromyalgia? Bad the last 2
Was Your Rate of Decline Fast? yes,cipro(anibiotic)and effessor(horrible drug!)Since the breast infection these meds were given I haven't been the same since
Have You Tried Avoiding Dietary Fluoride? No,but will diffently try it! I'll try anything!!!!!!
Remedies Tried: Zoloft(joke) any thing offered from dr.or tv
Your Theories: it seems like 2 weeks a month the worse.started menopause at 39. Now this seems worse around when I used to have my menses? Bloating,iritibility.Now I just cry not bleed.
Are We Missing Any Important Questions? Is there any help!Does anyone help us?

 

08/09/2008
Name: alice
City: spokane valley
State/Country: wa
Your Sex: f
Where Were You Born? berkeley, ca
Where Do You Live Now? spokane valley, wa
How Long Have You Lived There? 2y, 2mo
Your Age? 58
How many years has it been since you developed your symptoms of fibromyalgia? 38
Your Age At Onset of Symptoms? 20
What is Your Line of Work? Still working? clerk/cashier no
Medical History: severe fatigue, 1971 heavy strep for 12 mo, 1972 depression sleep problems weight gain hypothyroidism complete loss of thyroid tissue pain in muscles
Does Exercise Help? i don't exercise
What Were Your First Symptoms? severe fatigue
What Are Your Current Symptoms? pain fuzzy head memory problems muscle/joint stiffness
Did You Ever Have A Long Lasting Virus? not that i know of had strep throat for 12 mo in 1972
Any Military Service? no
Chemical or Pesticide Exposure? none that i know of
How Has Fibro Affected Your Life? horribly! lack of energy, depression, fatigue...all has impacted my entire family
What Makes Symptoms Worse? a small bump or bruise can cause what i call a "flare-up" ie inflamation, swelling, severe pain (beyond what is normal for me), usually afflicting one quarter of my body ( + ), sometimes one whole side, never all 4 quarters at once
What Makes You Feel Better? ibuprofin and relafin, but relafin affects my bowels so i hate to take it
Do Your Symptoms Include Brain Fog? yes
How many years has it been since you developed the brain fog associated with fibromyalgia? 25y
Was Your Rate of Decline Fast? to chronic fatigue, yes everything else took several years can't recall any drugs taken at that time
Have You Tried Avoiding Dietary Fluoride? toothpaste (i use tom's) wa state does not floridate the water
Remedies Tried: guaifenisin relafin
Your Theories: i'm not sure when ca began floridating the water, but i've had health issues since 1956-57 with gum boils, ADD symptoms, et c
Are We Missing Any Important Questions? floridation as a cause of ADHD?

 

08/07/2008
Name: Laura
City: Louisville
State/Country: KY
Your Sex: Female
Where Were You Born? Pittsburgh, PA
Where Do You Live Now? Louisville, KY
How Long Have You Lived There? 6 Months
Your Age? 31
How many years has it been since you developed your symptoms of fibromyalgia? 1
Your Age At Onset of Symptoms? 30
What is Your Line of Work? Still working? Management, yes
Medical History: Depression, anxiety, IBS,migraines, fatigue
Does Exercise Help? No, makes me too uncomfortable
What Were Your First Symptoms? Pain in legs and hips.
What Are Your Current Symptoms? Pain, headaches, lack of sleep,
Did You Ever Have A Long Lasting Virus? Yes, Mono
Any Military Service? no
Chemical or Pesticide Exposure? no
How Has Fibro Affected Your Life? Work, family, social
What Makes Symptoms Worse? lack of sleep
What Makes You Feel Better? don't know yet
Do Your Symptoms Include Brain Fog? yes!
How many years has it been since you developed the brain fog associated with fibromyalgia? 1
Was Your Rate of Decline Fast? no
Have You Tried Avoiding Dietary Fluoride? no
Remedies Tried: vitamins
Your Theories:
Are We Missing Any Important Questions?

 

08/06/2008
Name: Anita
City: Los Lunas
State/Country: NM
Your Sex: F
Where Were You Born? NYC, NY
Where Do You Live Now? NM
How Long Have You Lived There? 36 years
Your Age? 50
How many years has it been since you developed your symptoms of fibromyalgia? 8
Your Age At Onset of Symptoms? 42
What is Your Line of Work? Still working? Social work. Yes
Medical History: asthma, cluster headaches, burst brain aneurysm
Does Exercise Help? Stretching helps, don't exercise otherwise.
What Were Your First Symptoms? Back pain, overall soreness, and fatigue.
What Are Your Current Symptoms? Same, but additional pain in legs and arms.
Did You Ever Have A Long Lasting Virus? No
Any Military Service? No.
Chemical or Pesticide Exposure? Not sure.
How Has Fibro Affected Your Life? I'm much slower and it's difficult to do anything physical anymore. Even taking a walk hurts.
What Makes Symptoms Worse? Stress, and too much activity.
What Makes You Feel Better? Stretching, resting, and analgesics.
Do Your Symptoms Include Brain Fog? Not sure. I've suffered from brain fog for longer.
How many years has it been since you developed the brain fog associated with fibromyalgia? I've had brain fog for at least 10 years.
Was Your Rate of Decline Fast? No. It's been slow and insidious.
Have You Tried Avoiding Dietary Fluoride? No. I have well water, so I don't think it has any fluoride.
Remedies Tried: analgesics, Neurontin and Topamax
Your Theories: No
Are We Missing Any Important Questions? ?

 

08/05/2008
Name: Tammy
City: Misawa Air Base
State/Country: Japan
Your Sex: Female
Where Were You Born? Wright Patterson AFB, Ohio
Where Do You Live Now? Misawa AB, Japan
How Long Have You Lived There? 3 years
Your Age? 37
How many years has it been since you developed your symptoms of fibromyalgia? about 5
Your Age At Onset of Symptoms? around 32
What is Your Line of Work? Still working? Teachers Aide
Medical History: Menstrual problems, severe allergies, gall bladder removal, weight issues, broken bones, depression, heart palpitations, murmur, irritable bowel syndrome, bile reflux/faulty valve, chronic uti's, kidney stones, pain, fatigue, brain fog, headaches, Raynaud's syndrome, photosythesis rash, heat allergy and more...
Does Exercise Help? Not really, it tends to wear me down and make me sore. I haven't tried swimming yet though, don't have access to a heated (enough) pool.
What Were Your First Symptoms? mostly pain and fatigue
What Are Your Current Symptoms? almost everything listed in my prior medical history
Did You Ever Have A Long Lasting Virus? yes a few times
Any Military Service? Military dependant and spouse
Chemical or Pesticide Exposure? on and off throughout life
How Has Fibro Affected Your Life? It's starting to.
What Makes Symptoms Worse? Stress, over doing it, illness, heat
What Makes You Feel Better? time
Do Your Symptoms Include Brain Fog? unfortunately yes
How many years has it been since you developed the brain fog associated with fibromyalgia? about 3 years or so?
Was Your Rate of Decline Fast? not really
Have You Tried Avoiding Dietary Fluoride? I have tended to try to do that anyway becaue I've read about the effects of it.
Remedies Tried: Pamelor, sleep, percocet, wellbutrin, allergy meds, tylenol, yoga, vitamins
Your Theories: I would love it if they could pin point the direct cause of this and it were something that could be altered.
Are We Missing Any Important Questions?

 

08/05/2008
Name: Vanessa
City: Orlando
State/Country: FL
Your Sex: Female
Where Were You Born? New Jersey
Where Do You Live Now? Florida
How Long Have You Lived There? 26
Your Age? 36
How many years has it been since you developed your symptoms of fibromyalgia? 15
Your Age At Onset of Symptoms? 21
What is Your Line of Work? Still working? Receptionist
Medical History: None
Does Exercise Help? Yes. 30 min of cardio
What Were Your First Symptoms? Sharp pains
What Are Your Current Symptoms? Pain, fatigue
Did You Ever Have A Long Lasting Virus? no
Any Military Service? no
Chemical or Pesticide Exposure? no
How Has Fibro Affected Your Life? Slowed my life down
What Makes Symptoms Worse? Stress
What Makes You Feel Better? Laying in bed
Do Your Symptoms Include Brain Fog? yes
How many years has it been since you developed the brain fog associated with fibromyalgia? 6 years
Was Your Rate of Decline Fast? yes and was not on medication
Have You Tried Avoiding Dietary Fluoride? no
Remedies Tried: Antidepressant
Your Theories:
Are We Missing Any Important Questions?

 

08/05/2008
Name: Tammy
City: South Weymouth
State/Country: MA
Your Sex: Female
Where Were You Born? Boston, MA
Where Do You Live Now? South Weymouth, MA
How Long Have You Lived There? 47 years
Your Age? 47
How many years has it been since you developed your symptoms of fibromyalgia? 10 years
Your Age At Onset of Symptoms? 37
What is Your Line of Work? Still working? Customer service
Medical History: Inerstitial cystitis, diverticulosis, arthritis
Does Exercise Help? Yes, walking
What Were Your First Symptoms? Paid and loss of strength
What Are Your Current Symptoms? Pain, brain fog, depression, sensitivity in the waist area, tire easily
Did You Ever Have A Long Lasting Virus? No
Any Military Service? No
Chemical or Pesticide Exposure? No
How Has Fibro Affected Your Life? It's slowed me down so that I don't do the things I used to enjoy
What Makes Symptoms Worse? If I do too much, I suffer for a couple of days after.
What Makes You Feel Better? Limiting sugar and simple carbs
Do Your Symptoms Include Brain Fog? Yes.
How many years has it been since you developed the brain fog associated with fibromyalgia? 5 or 6 years
Was Your Rate of Decline Fast? Not that I recall
Have You Tried Avoiding Dietary Fluoride? No, not yet.
Remedies Tried: Provigil, ritalin, darvocet, vitamins and suppliments, Effexor, Elmiron.
Your Theories: If I started on a raw foods diet and drank only distilled water, I believe my symptoms would all but disappear. I think that should be my next step.
Are We Missing Any Important Questions? Nothing that I can think of.

 

08/04/2008
Name: April
City: Edison
State/Country: NJ
Your Sex: F
Where Were You Born? NJ
Where Do You Live Now? NJ
How Long Have You Lived There? 49 years
Your Age? 49
How many years has it been since you developed your symptoms of fibromyalgia? 27 years
Your Age At Onset of Symptoms? 22
What is Your Line of Work? Still working? bartend/waitress still working
Medical History:
Does Exercise Help? any movement
What Were Your First Symptoms? all over pain couldnt walk or lift anything
What Are Your Current Symptoms? feels like i have the flu all the time
Did You Ever Have A Long Lasting Virus? no
Any Military Service? none
Chemical or Pesticide Exposure? no
How Has Fibro Affected Your Life? in every way.
What Makes Symptoms Worse? sitting,laying down for a long time. stress
What Makes You Feel Better? movement
Do Your Symptoms Include Brain Fog? yes
How many years has it been since you developed the brain fog associated with fibromyalgia? cant remember i have had it for so long
Was Your Rate of Decline Fast?
Have You Tried Avoiding Dietary Fluoride? no
Remedies Tried: when first diognosed took elivil. I felt like a zombie. I havn't taken anything in years. Painful but deal with it
Your Theories: movement helps thats why i am still in the resturant business. the older i get the harder it is. keep a positive attitude. i'm not dead yet.
Are We Missing Any Important Questions?

 

08/03/2008
Name: Michelle
City: Aylesbury
State/Country: Bucks
Your Sex: Female
Where Were You Born? Oxford
Where Do You Live Now? Aylesbury
How Long Have You Lived There? 23
Your Age? 24
How many years has it been since you developed your symptoms of fibromyalgia? 1.5
Your Age At Onset of Symptoms? 23
What is Your Line of Work? Still working? Customer Service
Medical History: Fine other than a broken shoulder blade
Does Exercise Help? Yes, Swimming and Walking
What Were Your First Symptoms? Pain in left elbow
What Are Your Current Symptoms? widespread pain, difficulty sleeping, muscle twitches, pins and needles, anxiety and depresseion,
Did You Ever Have A Long Lasting Virus? No
Any Military Service? No
Chemical or Pesticide Exposure? NO
How Has Fibro Affected Your Life? Work life/balance Cant find a coping mechanism for the pain, emotional effects and loss of control over my life.
What Makes Symptoms Worse? Nothing particular other than cold and damp weather.
What Makes You Feel Better? Rest and positive mood
Do Your Symptoms Include Brain Fog? When first diagnosed yes nut now only when I extremely exhausted.
How many years has it been since you developed the brain fog associated with fibromyalgia? 1
Was Your Rate of Decline Fast? yes and I has taken Diazepam for a damaged lower spinal cord.
Have You Tried Avoiding Dietary Fluoride? NO
Remedies Tried: Oxygen supplemt, calcium, magnesium and malic acid and mexivan wild yam.
Your Theories:
Are We Missing Any Important Questions? Think my fibromyalgia was due to a damaged lower spine.

 

08/02/2008
Name: Dawn
City: Misawa AFB
State/Country: Japan
Your Sex: Female
Where Were You Born? Pennsylvania
Where Do You Live Now? Japan
How Long Have You Lived There? 3 1/2 years
Your Age? 34
How many years has it been since you developed your symptoms of fibromyalgia? 3 1/2 years
Your Age At Onset of Symptoms? 30
What is Your Line of Work? Still working? Paraprofessional Elementary School. Yes, still working.
Medical History: Guillain Barre, 5yo. Rheumatoid Arthritis, 30yo. Nothing else significant.
Does Exercise Help? Walking seems to help. Warm water - like a jacuzzi - really helps the most.
What Were Your First Symptoms? Exhaustion. Widespread pain - flu-like symptoms.
What Are Your Current Symptoms? Exhaustion. Flu-like symptoms on occasion. Burning in the muscles along my spine - top of back.
Did You Ever Have A Long Lasting Virus? No.
Any Military Service? No.
Chemical or Pesticide Exposure? No.
How Has Fibro Affected Your Life? I stay closer to home. I can't run and play with my kids, for extended periods. I have to ask people to slow down and wait for me.
What Makes Symptoms Worse? Wet weather - cold or hot. Humidity. Barametric changes.
What Makes You Feel Better? Hot baths. Lying still.
Do Your Symptoms Include Brain Fog? Yes, on occasion.
How many years has it been since you developed the brain fog associated with fibromyalgia? 2.
Was Your Rate of Decline Fast? Yes. No.
Have You Tried Avoiding Dietary Fluoride? No.
Remedies Tried: Nortriptiline.
Your Theories:
Are We Missing Any Important Questions?

 

08/02/2008
Name: Janet
City: Statesboro
State/Country: USA
Your Sex: Female
Where Were You Born? Statesboro
Where Do You Live Now? Statesboro
How Long Have You Lived There? 53 yrs
Your Age? 53 yrs
How many years has it been since you developed your symptoms of fibromyalgia? 3
Your Age At Onset of Symptoms? 50
What is Your Line of Work? Still working? Clerical No
Medical History: CAD, gallbladder removed
Does Exercise Help? don't do much
What Were Your First Symptoms? burning under skin, right below neck, between shoulders
What Are Your Current Symptoms? same, but not now more muscle pain over rib on back & around side to front reib area under breasts
Did You Ever Have A Long Lasting Virus? not that I know
Any Military Service? no
Chemical or Pesticide Exposure? no
How Has Fibro Affected Your Life? no energy, sleeping problems
What Makes Symptoms Worse? lying down
What Makes You Feel Better? being active
Do Your Symptoms Include Brain Fog? sometimes
How many years has it been since you developed the brain fog associated with fibromyalgia? recently
Was Your Rate of Decline Fast? yes, no
Have You Tried Avoiding Dietary Fluoride? no
Remedies Tried: none
Your Theories: no, looking for natural help
Are We Missing Any Important Questions? no

 

 

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