folk remedies and holistic cures

Summary of Fibromyalgia Questionnaires

Updated on August 1, 2008

Comments by Jason Uttley - Author of "The Cause of Fibromyalgia"

Please feel free to write with questions, comments, or just to share info: juttley@hotmail.com

Male or female?

95% Female

5% Male

[Comment: Based on 821 questionnaires submitted through July 31, 2008.]

Your age at the onset of symptoms?

Average (Median): 35 years

Average (Mean): 34 years

How long have you had symptoms of fibromyalgia?

Average (Median): 9 years

Average (Mean): 11 years

[Comment: Mean slightly skewed based on several respondents reporting that symptoms began in childhood. However, in nearly all cases, childhood symptoms seemed comparitively mild and appeared to reflect the respondents' general feeling that symptoms may have been related, even though they were not "classic" fibromyalgia symptoms.]

Do Your Symptoms Include Brain Fog?

Yes, or it comes & goes: 93%

No: 7%

RECENT QUOTES:

"Yes, there are times that I cannot even finish my sentences. I have to have other people to help me. I am unable to form words and feel my IQ has dropped. I have a 4-year college degree and want to go for my Master's Degree, but I do not believe that I could concentrate enough to complete it.." - Kelly (Mannheim, Germany)

"Brain fog is bad. I just said to my husband tonight that when i don't hurt i still have this annoying brain fog. I'm lost and don't know what to do." - Erica (Lakewood, CA)

"YES! I used to be quick and witty and now I have a hard time finishing my sentences.." - Rebecca (Pleasant Grove, UT)

"Very much so - I have a sharp mind - always have until this hit me last August (07). As I've said, I'm 4 courses away from a Master's in Education with a 85% average. My short-term memory has been affected - can't think to finish sentences, phrases, where something is, etc. A very scarry experience for me - I knew there was something wrong. Started throwing up as well when I was brought to emergency room - hospital thought it was a stroke, etc. What a farce! They just don't know about this fibromyalgia - they know of it but that's it. They really believe there is nothing that can be done for this condition. Education, eduaction and education is lacking here in the Canadian health profession. All my help came from the U.S. - that's one thing I will stress when I write my paper!!!" - Peggy (Orillia, Ontario, Canada)

" ...yes... was not sure if it was part of the symptoms, now that I read it on your site, I guess there is a relation with fibromyalgia." - Monique (Montreal, Quebec, Canada)

"Yes - however I believe I've had GREAT success in living with & diminishing the effects of brain fog through the use of a supplement called DMAE. It truly helps & I wish I could share that with everyone who suffers from fibro. It takes about a month to see results and improvement is gradual but definite. I take a brand called Source Naturals 351 MG once a day. I hope many others will experience the same relief I have from at least this one crippling effect of fibro." - Margaret (Amarillo, TX)

"Yes, at times, but no doctor has never mentioned that it could be a symptom." - Isabelle (Carmel, CA)

"Think i started noticing it 5 or so yrs ago but so much worse in the last 3/4 years. I had been on lexapro for a few years now and decided to quit 1/1/08 because i didn't see why natural real life stress needs to be suppressed (doc doesn't know yet-shes an advocate for thinking i am sad). It was a surprise to me that my head has become better from the deep fog i seem to have been in. I feel like i can think clear again to the point of my being able to think again - and i even want to create a quilt instead of pass by the thought because it didn't seem possible. I can remember things long enough to write them down now!!" - Jane (Sebeka, MN)
[ Note: Lexapro is a drug that contains fluoride.]

"Yes, they did until i switched to raw food and started detoxing more." - Lisa (Rancho Mirage, CA)

PRIOR QUOTES:

"YES. In the long term, it's actually proving to be one of the worst symptoms. Reminds me of that saying:
'Of all the things I've lost, I miss my mind the most.' Indeed!" - Tracy (Brisbane, Australia)

"Have always been intelligent intellectual. A reader, a writer, a self educator. Now my focus is shot to hell. When this started I had written 800 pages of a novel. Only need about 50 to finish first draft...but can't get my head to work anymore. URGGGG! thats what I hate." - Maurcie (Gainesville, Texas)

"Yes, family tries to tell me it's because I'm getting older, but it began when I was in the hospital in 1998 and I was only 46. I used to have a memory so good that I could tell you what information was on what page of the handbooks and what it said when I worked. I also could remember details extremely vividly. Now, I can't seem to remember what I did last week." - Connie (Ogden, Utah)

"Absolutely. I will find the peanut butter in the refrigerator and I forgot how to answer my cell phone before. It is getting worse." - Christina (Marion, Indiana)

"Yes! I cannot concentrate at all at some times. This is one of the reasons I lost my job. I had to answer police & fire calls for help and when confused, I could not recall important information needed to give out calls." - Kathy (Jasper, Alabama)

"I graduated with honors from Wellesley College an I have an affinity for tackling any problem an learning whatever I can research. I am almost despondent that now I look at an article or sit down to write anything - many many times I read the words and do not even remember them through the next paragraph or being completely unable to put words together in any other way than rote. I get discouraged when I try to learn something and I often don't even try anymore. I successfully homeschooled my older 2 out of 6 children, both of whom are on full academic scholarships at college. Now it is difficult to even order their curriculum because of the concentration and recall that it takes." - Mary (Dripping Springs, Texas)

"Definitely! And it is getting worse this last year. Enough to scare me." - Laurie (Dacula, Georgia)

"Yes - I can handle the other symptoms, but not this one!" - Jenny (Omaha, Nebraska)

"Yes, I have had the fear I was in early stages of Dementia (Alzheimers). Sometimes my brain just won't work and I am bright." - Alyne (Garden Grove, California)

"Not as much anymore. For the past 2 or 3 years I've been taking generous doses of vitamins made by a company called USANA. Within a week of starting the vitamins, the brain fog lifted ... quite remarkable." - Suzy (Kitchener, Ontario, Canada)

"Yes. I can't remember details like clients names, what I just read, how to mix products that I have used for years, picking up the wrong bottle even though I read the label on the right bottle right next to it. It seems like a short term memory fog just because I am often surprised that some of my greatest clarity is in memories from several decades ago." - Mary (Dripping Springs, Texas)

[Comment: Cognitive difficulties are considered one of the most universal & dibiliating symptoms of fibromyalgia. Rarely do sufferers with moderate to severe muscle & joint pain not have some stage of this classic symptom. Of the respondents have said "no" to this question, most appear to be in the relatively early stages of the condition.

The relative stages of cognitive difficulties are:
       1). Difficulty Concentrating (mild concentration problems)
       2). Attention Deficit (inability to follow normal conversations)
       3). Short-term Memory Problems
       4). Crippling Brain Fog (severely clouded thinking)

How long have you had brain fog?

Average (Median): 5 years

Average (Mean): 6 years

[Comment: Based on responses reviewed thus far, there appears to be about a 3-6 year lag, on average, between when early symptoms of fibromyalgia begin and when brain fog develops. This is hardly universal, as some, particularly those with more advanced conditions, appear to develop this symptom quite rapidly. However, this lag is not unexpected given the suspected link to the breakdown in mitochondia function / ATP production.

See Laylander article on Fibromyalgia Causes main page for a more detailed discussion.]

Still working?

Had to stop: 35%

Retired: 4%

Still working: 57%

Homemaker: 4%

RECENT QUOTES:

" VP at a Bank, barely working." - Kat (Mcdowell, FL)

"Professional driver. Yes, but take many sick days when fatigue and brain fog play up too much to drive safely, also TMJ has worsened this year and plays a role now as well." - Tom (Winnipeg, Canada)

"RN- in hospital, background in home health and hospice. Yes, almost unable to make it to work daily. To the point of debilitation." - Pam (Elkin, North Carolina)

"I work as unit secretary for a physical rehab unit. I am currently still working, but taking a lot of days off for illness." - Cari (Redlands, CA)

"Teaching. Still working, although I have no energy left for social life. Extremely exhausted. I was disabled for 6 years for slight recovery. I am thinking about going on disability again. I cannot keep up with the work load." - Kay (Port Arthur, TX)

[Comment: Fibromyalgia is far more dibilitating than the above statistics seem to indicate. Keep in mind that all of those who have had to cut back their hours to part-time, or are struggling mightily to maintain their livelihoods, are included in the "Still working" grouping. Regardless, symptoms have clearly reached a debilitating stage for more than 1/3 of respondents.]

Prior medical history?

Most Common: Thyroid Dysfunction, Chronic Infections, Chronic Fatigue Syndrome (CFS), Irritable Bowel Syndrome (IBS), Multiple Chemical Sensitivity Syndrome (MCS), Temporomandibular Joint Syndrome (TMJ), Restless Leg Syndrome (RLS), Headaches, Severe Depression.

Common: Osteoarthritis, Rheumatoid Arthritis, Environmental Allergies, Carpal Tunnel, Gall Bladder Removal, Hysterectomy, Degenerative Arthritis of Spine, Easily Broken Bones.

[Comment: Many fibromyalgia sufferers and experts, including Dr. R. Paul St. Amand and Dr. Garth Nicolson, have come to believe that medical specialization has contributed to many different labels being given to what is in fact only one disease. With fibromyalgia and its related conditions having been labeled based on one symptom of central interest to a given medical specialty, many advocates increasingly recommend a holistic approach to treatment.]

Theories or Comments?

RECENT QUOTES:

"I'm so incredibly grateful for this website. For years I've known that my body couldn't just break overnight..that there had to be more to this problem. Now at least I know what I'm dealing with and I don't have to feel like it's all in my head. When a problem is truly "psychosomatic", if you work on your issues (emotional, mental, etc.) that supposedly are creating the problem in your body, you'd assume that your symptoms would improve. Mine did not. In fact, even though I've moved emotional mountains over the last 16 years, my symptoms stayed the same or got worse. Now, the truth is finally here for me! For everyone else out there who's suffering with FM, and for earthclinic too, I wish you Love and Light. Don't ever give up." - Carrie (Longmont, CO)

"I made comments to my husband that it was my house...because when we go on vacations I feel a lot better, but on our last vacation I narrowed it to the water - but we have a water softener system so is hard to believe my theory." - Catalina Martha M. (Los Angeles, CA)

"I tend to believe what Dr. John Lowe thinks, that it is untreated hypothyroidism and metabolic fatigue. I know I was hypothyroid 20 to 25 years before I qualified for replacement meds. Of course, now with the change in the parameters in the TSH, I would have been deemed hypothyroid long before I actually was." - Barbara P. (Charlotte, NC)

" Caused by thyroid removal! Happened immediately following surgery [for thyroid cancer], made worse by radiation treatment." - Terri (New Port Richey, FL)

"Right now I am taking D-Ribose 3 times a day (Dr. Titlebaum's theory of ATP) I haven't noticed anything yet but I am only in my second week." - Donna (Sandwich, MA)

"I found a doctor and he told me that Fibro, was because I was missing an enzyme in my kidneys that keeps my body from removing calcium phosphate from my body and my body has built up to much calcium phosphate in my muscle and joints, and that why I hurt. He put me on Guaifenisen, to help my body remove the calcium Phos. from my body, but I don't feel much better, maybe you've heard of the " Guaifenisen Protocal" by Dr. St. Amand? When I Started the protocal my body hurt all over really bad, like he said it would. But I don't think I'm getting anywhere." - Jennifer (Marina Del Rey, CA)

"Now that I have started doing research, I have also found in my research that the cysts that are in my breasts and cause me so much pain has been linked to women lacking in Iodine deficiancy, probably caused by the same thing.." - Kelli (Fortuna, CA)

I am currently taking myself off prescription drugs. I am seeing my doctor today because of them. I think they make me worse!!! I also think they cause me to have other problems that my doctor prescribed more meds for....I want off! I am going natural. Pharm. companies scare me. I had low blood pressure until going on antidepressants. I want to see what happens when I get off the Lexapro." - Julie (Arena, WI)

"The flouride theory makes sense to me. Two weeks ago I whitened my teeth overnight (using trays)and I was sick the next day. I always thought my problems were related to the pesticide exposure.." - Robin (Baltimore, MD)

"I saw 5 or 6 "specialists"...all of whom had no idea what was wrong with me... one of the specialists was a rheumatologist and none of them even suggested fibromyalgia..they basically just shook their heads and said they had no idea of what was wrong with me...it was even suggested that perhaps I was unconsciously making myself sick. I finally went to an allergy specialist( last ditch effort to find help) and she suggested I see a neurologist and he diagnosed fibromyalgia in 15 minutes! Why aren't more doctors more aware of the signs and symptoms...very frustrating!" - Cathy (Saint John, NB, Canada)

"I think that it could be caused by some kind of vitamin deficiency. If I stop taking my vitamins, my symptoms get worse. I think they need to research the cause of fibromyalgia instead of just trying to treat the symptoms. Find out what is causing this, I am sure there are plenty of people who would volunteer to under go testing, I would be the first to sign up. I noticed a pattern in the age of onset which is around 30 to 40 years old. Just an observation." - Cheryl (Mount Vernon, OH)

"My 13 years of research I believe that fibromyalgia is two things, a lack of vitamins, minerals, or trace minerals and a toxic body. Get rid of the toxins and take plenty of supplements because we all are not getting all our vitamins in this day and age with the way foods are processed and the chemicles pumped into the animals to make them grow fastster and fatter. Everyones dna is different and everyone eats differnet so we are all suffering from certain vitamins, minerals and trace-minerals. Find what your body is lacking in and you find your own cure. " - Susan (Sidney, OH)

"The hepatitis vaccine has some serious flaws, i only had it done as a requirement for work. wish i had investigated it much more." - Gail (Phx, AZ)

"I also find that if im over weight i have more pain, as long as i am at a stable weight, and my muscles are strong i feel better. Whenever i lack muscle density i feel the pain increases. For me, being the sun is an incredible remedy as long as the weather is dry and keeping myself active and eating well. Meditation and an effortful approach to life in which i refuse to be a victim has been very helpful." - Catalina (Toronto, Canada)

"This condition maybe caused by excessive fluoride exposure. Or by pathogens such as yeast or virus that becomes active after the immune system is altered by antibiotic exposure." - Tom (Raleigh, NC)

"Doctors just seem to want to treat the condition they never to seem to care where this came from and maybe thats what they should be concerned with and then maybe they would be able to cure this." - Dawn (Milford, PA)

"There's no way on this earth I'll try Lyrica, Neurotin, or other prescriptions for this. After having been on anti-seizure medications for 36 years, I know better than any doctor what their long-term side effects are. I'm living daily with the serious consequences of being on anti-epileptic drugs for long term. I'm looking for natural remedies and have got to learn not to overdo my exercise." - Jacque (Quanah, TX)

"What is the link that we all have? Is it toxins or hormonal? I think operations set this off and certain drugs. Wish the docs could help find a cure." - Delphina (Secret Harbour, Australia)

"When I shut down my digestive system after the homemade liver cleanse I felt better and when I started juicing for three days following the cleanse I felt better. Liver cleansing to get rid of the toxins from medicines, tap water has helped tremendously. I found eating foods again made me feel worse. I felt like a new person after the liver cleanse and drinking only juices for three days following the cleanse. Eating food or water from restaurants are very bad for you. People need to get off all the meds and detox and tough it out and try not to take any drugs at all if possible and not to drink any water from tap." - Betty S. (Greenville, SC)

"Out here in the country they think Fibro is only pain (because thats all they seems to advertise on the Lyrica commericals). They don't seem to know about the fatigue or brain fog." - Patricia (Ringtown, PA)

"The ONLY thing that has ever helped me is Dr. Rodger Murphree's FMS/CFS protocol. He is a specialist in orthomolecular medicine and absolutely knows his stuff. I found Dr. Willen in Greensboro NC who got me on this program and its helped more than i ever anticipated. However I need to do more to clean up my diet bc i can tell a big difference (that i'm not doing my part). This book about Treating and Beating Fibromyalgia is the -Best- book i've ever found on the disease and his treatments have made a huge difference. Please try it and see for yourself (and no, i'm not getting a kickback for recommending him! lol)" - Christy (High Point, NC) http://store.drmurphreestore.com/trandbefiand.htm

"I wonder if trauma has a relationship to setting off so many odd health problems. It seems to me this is very much like arthritis onlty everywhere and much more serious. I am told I have Gout, Rhumatoid Arthris, and Osteo-arthritis. also have sleep apnea and what I am told may be irritable bowel syndrome whichj is relatively new for me. It is quite uncomfortable." - Wayne (Waukesha, WI)

"I am beginning to suspect a buildup of toxins in my body. Toxins can settle anywhere, and since there is no known cause nor cure for FM, muscles seem the logical place for toxins to settle." - Linda (Sulphur Springs, TX)

"Still on statins, I believe the CoQ10 helps, but after years of thinking I was nuts, I find that so may of the theoretical causes have been a part of my life. Statins; fluorides by way of years of living in a fruit orchard and an area with an abundance of natural occuring fluoride in the well water. I did take a cousin of phen-fen and have been on various antidepresants for about 15 years, paxil and prozac included." - Marie (Walla Walla, WA)

"Wish I did. If I did then I could make this all go away. It is hindering my life and I am not happy about it. I am sick of being tired and in pain all the time. It is bad enough to have to live in pain from a spinal cord injury and arthritis since I was 20. The last thing I needed was this. The only thing I can say is that it got worse after the 14 kidney operations I had from October - December of 2006. Figure it out." - Leslie (Bellevue, NE)

" I think that there is some chemical or pesticide that is used in foods that certain people have a low tolerance for... For example, an allergy. Some people are allergic to certain foods and others aren't. I think there's a common link of something that may not be potent in certain dosages to most people but may cause these symptoms in others. Other reasons for that... Like if you have fibro. chances are you have a problem losing weight. Now think, if you are having an allergy attack, your cells swell up, even your face swells up. I think the same thing happens with the body... thus problems losing weight and all of these other associated problems.." - Janelle (Miami, FL)

"I have no clue. I am going to try an entire body cleanse, parasite, colon, etc... I believe I feel best when my colon is clean and I eat very tiny meals that are fresh foods,very little grains, mostly vegtables. No packaged or processed foods. Sugar causes me severe flare ups. Honey does not have the same effect. Lots of fluids with lemon seem to help. I began Mother Vinegar-hoping for results. The doctor wants me to try lyrica but I have read to much about weight gain. I prefer holistic if possible." - Julie (Johnstown, PA)

"As above I have my own ideas but hate that a person has to self doctor so much. Why aren't there more centers that combine the doctors needed to work together to help heal or manage people like me, there are so many in pain feeling like they have been made to look like druggers rather than people that want not to lay around or slow down but jump back into life with the help some of these combinations have to offer, will I always have to fight to get what can work for me? I do live in the middle of nowhere and don't have the money to dash off somewhere for treatment but have looked into studies where one could get paid for experimental treatments. For now i have gotten back on the self help wagon and am having accupunture treatments and soon to see a neurologist of who I have never been to yet. So with MRI in hand and a hard to follow history, wish me luck in some relief! Bless you all and prayers. " - Jane (Sebeka, MN)

"I know it is not a popular vote but I do not believe it is an enviromental or drug related illness and that is because I have had it since I was an infant. My parents frantically took me from Dr to Dr when I was one year of age because I would scream in pain. I think it will be an imbalance of the pain receptors in the brain or something such as that. I was not exposed to anything my first year of life, no meds, no sickness, no x-rays, nothing and I was already inflicted with it." - Karen (Council Bluffs, IA)

[Comment on above quote: All theories are welcome here Karen. I think it's important to note though that neurodevelopmental toxins, like fluoride & mercury, have been proven to pass from mother to child through the umbilical cord during pregnancy. EPA Scientists and others, like the Environmental Working Group, do their best to emphasize that point. That said, it's difficult to see from the other answers you provided on 5/4/08 (which I would certainly encourage others to read), that your fibromyalgia necessarily originated in childhood. Perhaps it did. However, you also said you'd been "otherwise healthy"...that your symptoms began only with "leg pains"...that you developed brain fog only about "8 years" ago at the age of 40....and that your condition seemed to worsen rather dramatically only when "I had back surgery and went downhill rapidly after that. I have no idea what type of anesthesia medications I had."

You can find a list of fluorinated anesthetics here.... http://www.slweb.org/ftrcfluorinatedpharm_ane.html

You're entitled to your own conclusions, but I'd try to encourage you to try to keep an open mind,
at least until you test your sensitivity to fluoride (by minimizing your daily dietary exposure).

PRIOR QUOTES:

"Stop the fluoride exposure and the symptoms go away. I thought I had MS, but the symptoms went away as soon as I started going to Whole Foods market for my groceries and started reading labels." - Shannon (West Palm Beach, Florida)

"I think that the world we all live in is TOXIC, and our water and food is as well. We are all toxic. It takes an injury or a stressful event to bring out the illness that we all have in our bodies." - Debra (Toronto, Ontario, Canada)

"Organic foods, natural body care products seem to help. It seems the less chemicals the better I do." - Michelle (Miami, Florida)

"I have believed the FMS is some kind of poisoning for many years. However, it has been only recently that I came across the toxin idea and now fluoride." - Kendra (Big Bear City, California)

"I quit asking for pain meds as the DR's just thought I was there seeking drugs. One DR explained to his student nurse that I really didn't have any pain, I just thought I did. I understand that over the years, strides have been made to recognize this disease, so I'm now back in the loop of trying to find some way to have this pain go away. It's getting worse all the time." - Catherine (Deltona, Florida)

"To go to 10 doctors and not have one of them know what is wrong with you or what to do with you.
My dentist and vet were more helpful." - Diane (Baltimore, Maryland)

"The fluoride theory and the fact that it's used in prescription drugs makes so much sense to me, as fluoride toxicity I now see meets every one of my symptoms, even the fusion of the bones in my spine which is devastating to me. THANK YOU SO MUCH for this affirming information and for all your help! Thank you especially for helping me to feel good about myself as a human being, by knowing I don't have to be embarrassed that I have fibromyalgia and that it's not my fault or in my head and that I CAN CURE MYSELF which I'm trying hard to do. It's so important for me to know that fluoride is the cause, to prevent further damage and to help me reverse it. GOD BLESS YOU!!!" - Olivia (Safed, Israel), registered nurse of 17 yrs

"My theory is that my body can't process all the excess toxins, sugars, additives, hormone injection and crap in our food. I can't afford to eat completely organic/vegetarian so have to buy store bought items." - Carrie (Saskatchewan, Canada)

"From 29 - 39 I would repeatedly get infections and they would prescribe me antibiotics. There was 1 period when I would get an infection every 3 weeks but still the doctors would give me antibiotics and treated me like a hypochondriac." - Glenda (Chicago, Illinois)

"I believe Fibro is a type of massive system failure of the endocrine system beginning in the hypothalamus and affecting the thyroid, pituitary and adrenals. That in turn causes other systems to malfunction. Also seems to be a serious problem with nutrients not being absorbed at the cellular level in spite of normal blood tests. Currently researching how to remove lactic acid from my system hoping it will decrease flare-ups." - Jean (Marysville, Washington)

"I believe the fall I took in '98 may be the initial cause to this, but the Lipitor was the catalyst that set it off. I have not been the same since I started taking that poison." - Capt. Larry (Barnegat Light, New Jersey)
[Note: Lipitor is a fluorinated drug]

"I truly believe that people w/fibro/CFS/myofacial pain syndrome are ill because of toxins in their body. There are SOOOO many things at the grocery store that are harmful, and we continue to consume them and wonder why we're sick! Also, things like mercury fillings, fluoride in our water, chlorine in our pools, etc. should be outlawed - I've never heard of anything good coming from these kinds of things." - Laura (Portland, Oregon)

"I believe that this is caused by the body's inability to complete the natural ATP process. " - Mischell (The Colony, Texas)

"I think the more natural food you can eat, the better. There are too many additives in processed food. Sugar is like poison! Drink good water, not tap water! Take good supplements." - Marsha (Florida)

"I think chemicals and food additives combined with sedative, fast paced lifestyles, and lots of stress, perhaps cause fibromyalgia. I definitely think that our bodies aren't strong enough to combat all of these things." - Suzanne (St. Petersburg, Florida)

"I have recently learned that iodine could be the missing link in this. I was recently found to be extremely iodine deficient. Fluoride can only sit on the receptor sites where there is not enough iodine. So it seems that if one is lacking in iodine they are much more susceptible to fluoride toxicity and also heavy metal toxicity. Dr Brownstein has written an excellent book on iodine deficiency and the fluoride connection." - Pat (Toledo, Ohio)

"I currently believe the cause of fibromyalgia to be a Candida (yeast) over-growth, exacerbated by a PH imbalance and caused by sugar consumption and antibiotic use." - Daniel (Vancouver, Canada)

"The flouride exposure is a novel idea for me. Thought fibromyalgia was partly genetic complicated with hectic, stressful life style and unhealthy diet complicated further with misuse of pain relief meds, consistant use of antibiotics, liquor and smoking.'" - Jane (Suva, Fiji)

"I believe that it is manageable. Once it is in "remission" for a while i wonder if i ever had it and then for no reason (or at least i have not figured it out yet) i get a flare up and can barely walk. the book "from fatigued to fantastic" was wonderful as it was written by a doctor (a man a that) who suffers from FIbro. If more Fibro sufferers would start listening to their bodies and stop blindly following Doctor/specialist advice many would do well and be able to return to work." - Charity (Barrie, Ontario, Canada)

"I do not believe it is heredity. No one in my family has had this that we know of, although I have 2 deceased daughters, the first lived 3 weeks, the second was stillborn." - Kevin (Linton, Indiana)

"Was facilitator of group that Jason came to to explain his theories on connection of fluoride toxicity and fibro. Have been trying some things since and when I stick to them I do feel better. I am going to go back to them after reading his article and add additional suggestions from it. He is a very convincing speaker well informed and knowledgeable." - Linda (Afton, Minnesota)

"I believe it is caused by exposure to environmental chemicals and eating a lot of processed food and bathroom products, combined by injuries to neck, esp. pollution of air and earth." - Candace (Studio City, California)

"I believe this may be contributed to the anthrax shots I was forced to receive. I feel sorry for anyone else with this problem." - Lisa (San Antonio, Texas)

"I believe there are many reasons including antibiotics and other prescribed meds, thyroid problems, infections, and, chemicals in our environment." - Alvita (Detroit, Michigan)

"I believe it's caused by a chronic systemic Candida infection. I also was severely depressed. Sugar & flour definitely aggrevate my problem." - "C" (Palos Park, Illinois)

"I learned so much from your website about the causes of Fibromyalgia and Chronic Fatigue Syndrome. I remember in elementary school of being in a line and given a little dixie cup of fluoride to swish. With fluoride in so much of the everyday items we use, I absolutely will be more proactive in cutting this out of my familiy's diet. If I can do anything to prevent my 15 years old daughter from developing Fibromyalgia, I will!" - Peggy (Jeffersonville, Kentucky)

"Possibly from the birth of my son and supposedly having a low thyroid during the course of my pregnancy." - Tania (Adelaide, Australia)

"I don't believe the dr's, no matter how caring, have any clue what to do for this." - Shari (Fond du Lac, Wisconsin)

"My symptoms and diagnosis occurred after a whiplash injury. I believe an acute, stressful injury sets off the immune system causing an "overkill" when reacting to the release of histamines, and platelets at the injury site. This in turn, creates havoc in the total body system. I feel the immune system has gone awry. Instead of repairing the tissue/injury, the immune system has attacked it, as well as other areas of the body erroneously recognizing these areas as foreign substances." - Josie (North Carolina)

"One is a malfunction of the brain synapses - prone to misfiring at different times, thus affecting different systems of the body at irregular intervals. The second could be from the mass inoculation the military uses - the large amounts of them entering the body when the body is already stressed, combined with a pre-existing immune problem, confuses the immune system, causing it to attack the wrong things." - Jeanene (Las Vegas, Nevada)

"I don't think pain meds, sleep meds, or depression meds are the answers. They need to treat the overall symptoms as a disease like they do Parkinson's and MS. It is an extreme illness that is not caused by depression. It is related to sleep, but is the FM causing the lack of REM sleep or is the lack of REM sleep causing the FM? They need more money to do more research. It may not be a terminal illness but it is a life altering one that needs to be taken seriously." - Michelle (Tennessee)

"I think oxygenating therapies would help. also endocrine support. I have also tried T-3 and T-4 supplementation during fall and winter months..this results in increased energy levels, but there is still aches and other FMS symptoms. I also think that the pituitary, adrenals, sex glands and hypothalmus are involved as well; an assault on the immune system through trauma causes these to "shut down" for some reason, allowing the opportunistic pathogen to make headway and start multiplying." - Robert (Manchester, New Hampshire)

"The doctors made me worse." - Terry (Canyon Lake, California)

"I think fluoride has been a major factor in all my health problems. I think all the fillings I had were very damaging and the vaccines given to me. I had 3 flu shot but will never get another. " - Leslie (Pheonix, Arizona)

"Fibromyalgia is a very sad thing. It takes away your ability to live a full and happy life. It dictates to you what you can and can't do. If you extend yourself you pay the price. It is an invisible disorder that most people can't begin to understand." - Cheri (Wisconsin)

"Don't know what it will take for people to accept this is not just the same old "hysterical women" syndrome. Just like all women's issues throughout time. First to have to convince the male docs your not crazy (realize men have this too, but seems predominately female). Guess I'm particularly bitter because with all my documented physical problems, I received my medical disability not because I had a disease, but "because I truly perceived that I did", if you get the difference and the irony. Thus I have a "psychological" disability and not a physical one." - Maurcie (Gainesville, Texas)

"I suspect it's thyroid related. Docs are too quick to pass out antidepressants instead of looking for the physical cause of depression. Treat the cause NOT the symptom and we'll all get better. The crap they put in our food and water is a big problem. Soy and hormones are mixed into everything. Kids are hitting early puberty and having thyroid problems, but instead of recognizing the mutation for what it is, physicians just say 'that's the norm for now.'" - Patty (Ocean View, Hawaii)

"Please! There is a reason Dr. Jacob Teitelbaum opened all those centers for fibro & chronic fatigue. He HAD those diseases himself. He is right! I'm not the only person saying this. Talk to others at Natural Thyroid Hormones on Yahoo group." - Amy (Reston, Virginia)

"I wonder about drugs, especially those given to us as children in the form of vaccinations." - "V" (Colorado)

"I wish more doctors recognized it. One acted like I was a hypochondriac and refused to treat me." - Shelia (Jasper, Alabama)

"I just wish some one would take this serious and help us that suffer so bad. There's got to be something in our systems that are similar. Do some blood work on people with FMS, see if there something there. And last but not least. God Bless you all with Fibromyalgia. And those who search for a cure." - Sandra (North Carolina)

What were your very FIRST symptoms?

RECENT QUOTES:

" Flu-like symptoms, fatigue, pain all over but worse in neck, shoulders and back, inablility to concentrate." - Robin (Baltimore, MD)

"Extreme fatigue, fog, pain in lower back, and knees." - Nina (Monroe, NY)

"Fatigue; muscle weakness; migraine." - Bonnie (Perth Amboy, NJ)

" Tingling & numbness from the elbows and knees down (may be more related to hypothyroid), extreme weakness & fatigue, brain fog, inability to focus, and remember, unexplianed aching throughout my body." - T (Lexington, KY)

"Fibrofog, body pain, insomnia, fatigue, hair loss, interstitial cystitus, brittle, breaking nails." - Pat (Oakbrook Terrace, IL)

"Flu like symptoms, extreme tiredness, swollen glands." - Robert (Manchester, NH)

"My first symptoms began with Fatigue and Severe IBS symptoms. I had abdominal pain, swelling, bloating, vomiting, etc." - Kelly (Mannheim, Germany)

"Constant pain in shoulders and neck, IBS, Fatigue, Severe Depression." - Carly (Black Mountain, NC)

"Brain Fog! Hands, Hips, neck ankles, and back real sore and the tiredness was unreal." - Mechelle (Shelby Twp, MI)

"Fatigue, pain in heels,back,knees (felt like a sledge hammer to my knees). Blurred vision, jerks and tingling thru body. Muscle and joint pain thru out entire body." - Betty S. (Greenville, SC)

"Extreme fatigue, burning and aching in legs." - P.K. (Norwalk, CT)

" Dizzy, lightheaded, fatigue, skin issues, depression, migrains, forgetfulness." - Stella (Ohio)

"Headache, jaw tightness, ache & cramps in arms & legs." - Marie (Walla Walla, WA)

" Fatigue, difficulty recovering from colds and flue, unable to withstand temp. changes, bowel problems, food intolerances, back and neck pain, depression, insomnia , hair loss, etc." - Carol (La Verne, CA)

" Severe neck pain, (diagnosed with spasmodic torticollis?), carpal tunnel, hip pain, muscle spasms." - Peggy (Orillia, Ontario, Canada)

"Joint and muscle pains, fatigue, tenderness, tmj." - Angela (Bribane, Australia)

"Chronic fatigue, sore throat, daily migraines, muscle tenderness/achiness." - Antoinette (Seattle, WA)

"Stiff neck, severe muscle spasms in the shoulders and back and neck and migranes." - Melissa (Haslet, TX)

" An odd all over aching, particularly in my collar bone, hips, shoulder blades, knees, ankles. Chronic fatigue for no apparent reason." - Meglyn (Gaithersburg, MD)

" Knots in my shoulders and neck. Exhaustion." - Kelly (Dover, DE)

"Neck pain, depression, fatigue." - Abbey (Rockville, MD)

"Flu like symptoms, feeling like I had a high fever, but temp. was normal, my joints felt swollen and sore, but there was no inflamtion." - Mary (Fairfield, OH)

"Fatigue, worsening of allergic/asthmatic symptoms." - Shannon (San Francisco, CA)

" Severe muscle aches/spasms, extreme joint pain, chronic yeast infections, insomnia, brain fog" - Jessica K. (Ormond Beach, FL)

PRIOR QUOTES:

"My thyroid got under active, no energy." - Donna (Alabama)

"I had step throat. Took antibiotics. The symptoms remained and I felt sicker." - Natalie (Upstate, New York)

"Extreme fatigue." - Kacey (Turlock, California)

"Low thyroid and depression." - Debby (Hobbs, New Mexico)

"EXTREME FATIGUE, thyroid problems, brain fog, balance problems, sinus and throat infections etc." - Rebecca (Pittsburgh, Pennsylvania)

"Very sore getting out of bed could hardly move, hypothyroidism, RLS, hair loss, unable to think clearly, dry mouth." - Rose (Racine, Wisconsin)

"IBS, Extreme Fatigue, Weight Gain, Migraines Sometimes Insomnia." - Kristen (Richmond, Virginia)

"Thyroid, blood pressure, sinus, irritable bowel, spine pain, muscle weakness." - Patricia (Aberdeen, Scotland)

"Flu, urine infection follow by pain and exhaustion." - Emma (Wiltshire, England)

"Pain in wrist joints, pressure points, knees, and overall stiffness. Chronic fatigue - the worst part of all. And my capacity to concentrate for extended periods of time decreased ...during these times I always felt stupid and frustrated for not knowing why some easy concepts would not sink in." - Lisa (Rome, Italy)

"Joint pain." - Bobbi (Fort Collins, Colorado)

"My thyroid stopped working and I started having chronic hip pain." - Leslie (Pheonix, Arizona)

"Flu that never seemed to go away completely. I got tired easy and I started getting stiffer. And I had really bad headaches and then neck pain. And I remember sore throats early on." - Connie (West Virginia)

"It all started with my neck. I could not move it." - Debra (Toronto, Ontario, Canada)

"Thyroid Swelling, Muscles Aches" - Pearlene (Omaha, Nebraska)

"Throwing up a lot, neck and shoulder pain, low immune system." - Candace (Studio City, California)

"Flu, extreme muscle pain, extreme tiredness and trouble concentrating." - Sonja (Listowel, County Kerry, Ireland)

"What I can remember is that we went bankrupt trying to find what was wrong. I was told it was like I had gulf war syndrome. Extreme fatigue, chest pain, whole body pain, IBS, constipation, loss of concentration, inability to exercise, etc." - Janet (Steele, Missouri)

"Severe muscle pains in my legs, neck and severe fatigue." - Bobby (Michigan)

"Brain fog, exhaustion, bouts of inability to breathe, dizziness. Went downhill in a month to full blown can't get out of bed exhaustion and pain." - Laura (Seattle, Washington)

"Severe migraine headaches, neck and back pain, change in vision, and big loss of cognitive function. I would sit at my desk for an entire day and repeatedly attempt to start the same task over and over without ever getting it done. I could not continue to work. Period. It happened just like that." - Lisa (San Marcos, California)

"Depression." - Heather (West, Michigan)

"Exhausted even with 8-10 hours of sleep, weight gain, stiffness." - Anna (Helotes, Texas)

"Fatigue, sore muscles, back pain, swollen hands, fast heartrate, strong heartbeat, shaking head, brain fog, shooting pains in head, stomach pain, digestive issues, incontinence, loss of balance." - Bernadette (San Francisco, California)

"Hands were tingling." - Monica (New Jersey)

"Headaches, neck and shoulder pain, knees, tingling in extremities, panic attacks, depression, CFS, Fibromyalgia, mental fog, IBS, poor balance, intermittent sore throat." - Darline (West, Texas)

"I gained about 60 pounds in about 6 months, mostly due to horrible swelling and pain in my legs. They also discovered hypothyroidism and IBS. Prior to this, I was extremely healthy and thin." - Lori (Wisconsin)

"Flu, followed by sinus infection then kidney infection. Exhaustion, pain everywhere, back, shoulders, rib cage, neck, stomach, legs, knees,buttocks. from head to toe. Memory relapse, stiffness, head aches/migraines, incontinence, bruise easily/painful skin sensitive to touch, disorientation, dizzy spells, clumsiness, restless leg syndrome." - EM (Swindon, Wiltshire, England)

"Leg cramps at age 14." - Alvita (Detroit, Michigan)

"Leg pain. Migraines. Chronic sinus problems. Difficulty holding my arms above my head. Sensitive to medicines. Heart problems/irregular heart beat." - "V" (Colorado)

"Exhaustion, lack of concentration, brain fog, body aches." - Susan (Lynn, Massachusetts)

"Migraines, swelling of hands and feet, heart palps, tight throat, back of arms ache, inside of knees ache, back ache, severe muscle cramps, especially in thighs, calves, toes, rib area and back, extreme tiredness, sleeping up to 18 hours a day, swollen trigger points, temperature extremes ~ over heated in heat and severe chilled in cold, tight shoulders, brain fog, anxiety, very low body temperature (sometimes around 94*), sleep disturbances, crying, sensitivity to alcohol, odors and medicine, weight gain, bruising - PHEW!!" - Belinda (Meadville, Pennsylvania)

[Comment: Early symptoms often include...extreme fatigue (not relieved by sleep), impaired immune system, thyroid dysfunction, temperature sensitivity, urinary tract infections (or ghost uti's), irritable bowel, sore throat, swollen glands, headaches, leg cramps (usually in calves), difficulty concentrating, sudden weight change, depression, increased incidence of tendonitis, noticeable hair loss, severe neck stiffness, loss of balance, joint pain (frequently beginning around the knees), moderate stiffness in lower back & shoulders, severe muscle weakness/spasms, and intermittent numbness (normally in the extremities).

Before the complete list of symptoms fully develop and worsen, sufferers are often treated as hypochondriacs by physicians who fail to recognize the early symptoms of fibromyalgia.]