Fibromyalgia: A Likely Cause and Some Possible Actions

[wasabi]

What Causes Fibromyalgia?

No one knows for sure what causes fibromyalgia. Here are some theories:

Illness or extreme physical or emotional stress causes fibboromyalgia
Minor repeated trauma to the muscles causes fibromyalgia
The sleep disturbance that is associated with fibromyalgia causes fibromyalgia
An abnormality in the central nervous system causes fibromyalgia
A misalignment of the spinal column, particularly the upper neck causes fibromyalgia
A vitamin D deficiency causes fibromyalgia
Insufficient, properly digested protein causes fibromyalgia
Multiple hormone deficiencies cause fibromyalgia
Problems with the immune system cause fibromyalgia
An increase in free radicals causes fibromyalgia
Mecury poisoning causes fibromyalgia
Aluminum poisoning causes fibromyalgia

There are many things to account for in trying to determine the cause of this syndrome called fibromyalgia. Consider the following list of symptoms:

Chronic fatigue not relieved by extra sleep or rest
Headaches
Dryness of the throat and excessive water consumption
Urinary tract irritation
Aches and stiffness in muscles/bones (arthritic-like pain)

In lower back In neck area
In jaws In arms, shoulders, legs
Muscular weakness
Muscle spasms (involuntary twitching)
Tingling sensations in fingers (especially) and feet
Gastrointestinal disturbances

Abdominal pains Blood in stools
Diarrhea Bloated feeling (gas)
Constipation Tenderness in stomach area
Feeling of nausea (flu-like symptoms)
Pinkish-red or bluish-red spots (like bruises, but round or oval) on
the skin that fade and clear up in 7-10 days.
Skin rash or itching, especially after showers or bathing.
Mouth sores (also from fluoridated toothpaste)
Loss of mental acuity and ability to concentrate
Depression
Excessive Nervousness
Dizziness
Tendency to lose balance
Visual disturbances

Temporary blind spots in field of vision
Diminished ability to focus (possible retinal damage)


This list of symptoms is taken from page 393 of a book by George Waldbott titled, "Fluoridation: The Great Dilemma," published in 1978. These are symptoms of fluoride poisoning. Jason A. Uttley makes a very good case for arguing that the cause of Fibromyalgia is fluoride poisoning:

http://www.earthclinic.com/CURES/fibromyalgia.html

I believe that a major cause of fibromyalgia is an accumulation in the body of excessive amounts of fluoride, aluminum, mercury and likely iron as well. I believe that fibromyalgia is made worse by less than optimal intake of vitamin D, magnesium, boron and iodine.

What Can We Do About Fibromyalgia?

To address the aspect of excessive amounts of fluoride, aluminum, mercury and iron in the body, there are five things to do:

First, reduce your fibromyalgia symptoms by reducing your intake of flourides. Drink fluoride free spring water, distilled water, reverse osmosis water, or water treated to remove fluoride (usually with some aluminum compound as a catalyst and then further filtered to remove any aluminum from the treated water). Use fluoride free toothpaste. Don't cook in teflon cookware. Don't take fluorinated medications or supplements. Don't drink teas or other beverages with a high fluoride content. A number of people have reduced their fibromyalgia symptoms simply by reducing their intake of fluorides.

Second, reduce your fibromyalagia symptoms by reducing your intake of mercury, aluminum and unneeded levels of iron. Don't use salt containing aluminum. Don't us baking powder containing aluminum. Don't use atiperspirants containing aluminum.

Third, reduce your fibromyalgia symptoms by reducing the fluoride in your body. This is easier said than done. The only substance that I know of that might possibly do this safely is boron, which the body needs in small amounts, but it is toxic in large amounts - one could say the same thing about iron, or idodine or even table salt. I take a multivitamin (SuperNutrition Opti-Pack Iron-Free) that contains 3mg of boron per daily dose. (Boron is essential for bone building) I assume this is a safe dose, but it may not be therapeutic for fluoride removal. There just isn't much on this subject.

Fourth, reduce your fibromalgia symptoms by reducing the mercury, aluminum, and unnecessary iron in your body. Consider taking oral chelation therapy, IP6, boron.

Fifth, reduce your fibromyalgia symptoms by treating the symptoms of fluoride poisoning. This is basically what people have been trying to do to help fibromyalgia sufferers. One hopeful course of action mentioned in the article by Jason A. Uttley (the EarthClinic link) is to support the kidneys.

[Idealist]

I think this is all very interesting, and really applaud the fact that you would care enough to go to the trouble to help others with a condition you do not have.

But one thing bothers me. What about people like myself who suffer from secondary fibromyalgia? I never had a symptom a day in my life until I developed a chronic pain condition in my abdomen. A year after that the fibromyalgia set in, with all the symptoms, all the tender points and everything.

At that time I did a lot of research myself, and spoke to or e-mailed a number of well-know rheumatologists to try to find a way to treat or cure the fibro despite my chronic pain. The most common answer I got then was that fibromyalgia, at least like mine, is most likely caused by a disruption in the normal cycle of living caused by my chronic pain. I couldn't sleep, eat, work or exercise in any normal pattern, and this caused a huge upset in how my body functioned, leading to FMS.

Do you think there could be more than one cause, or more than one condition that mimics fibromyalgia? From what I've read, it's the tender points more than anything else that confirms the diagnosis, and I have them all. But mine have never been as terribly severe as those of others I've read about here. Any thoughts on that?

[Cipain]

Has anyone ever put the connection to their fibro. to the fact that they took an antibiotic in the fluoroquinolone class? I ask this because the symtoms can be almost identical. These antibiotics have fluoride in them also. These antibiotics are: cipro, levaquin, avelox, floxacin, and a few others that all have the same long lasting (years) side effects. If you have taken an antibiotic in the last few years before you started to get fibro. then it is possible that you had a reaction. Just google in the anti. you took and look at the side effects. It might be what is causing you problems.These Fluoroquinolones are very hard on the muscles and tendons amongst other things.

[wasabi]

If your fibromyalgia symptoms are not related to fluoride poisoning, then it is possible they are a kind of connective tissue problem. Try checking out the following website:

http://www.ctds.info/index.html

[wasabi]

The answer to your question is yes, someone has made the connection between their fibro and taking an antibiotic in the fluoroquinolone class. The first link in my first post is authored by a person who got fibromyalgia after two months of being treated with Cipro.



The second link is specifically about problems with Cipro. It is authored by three people who belong to "Parents of Fluoride Poisoned Children (PFPC)." People can decide for themselves what they think about the similarities between the Cipro side effects listed and their fibro symptoms. Be sure to read the long list of additional side effects that are not expanded on in the main part of the article.

[mrsD]

Has also been linked to fluorosis, as well as some OTC green algae products.

[Mrs. Bear]

Oh jeeze. Very interesting. (Hi, btw I was Erebear on the other BT before the crash and just got diagnosed with fibro this year. Got a bi-polar diagnosis first.)

I had to take floride at school every week and it messed up my teeth (I know-weird). Then I had post-partum after my first child and was on Prozac.

My pain showed up after some odd neurological event that we could never track down or name almost 4 years ago. Then the pain came a year after.

Interesting as all get out.

I have heard a few pain managment docs say they believe fibro is started with neck injuries. Quite a few say this, actually. And I have had a few mild neck injuries.

Wouldn't it be nice to KNOW how this disease / disorder starts? Maybe, then we could treat it more effectively.

[wasabi]

Thank you for your comments. I didn't know about fluoride contamination of green algae products.



Please note that fluoride aids in the uptake of aluminum by the brain - could this be a significant factor in fibro fog, hypersensitivity to pain?

[Idealist]

The mention of Cipro is very surprising to me. I was treated with several rounds of Cipro as a precaution in case my abdomimal pain was caused by some type of infection. They decided on this because I have had a high white blood cell count for the whole duration of my condition. So maybe it was the Cipro that led to secondary fibro setting in. Hmmmm, very, very interesting.

[wasabi]

You asked: "Wouldn't it be nice to KNOW how this disease / disorder starts? Maybe, then we could treat it more effectively."

I agree. I think the likely cause is fluoride poisoning. But not everyone who ingests significant amounts of fluoride gets fibromyalgia. Here are some further conjectures on my part.

Assume that fibromyalgia is caused by fluoride poisoning.

Then fluoride poisoning will bind to and therefore lower available magnesium and calcium. Fluoride may also facilitate the transport of aluminum to the brain.

Many people in the US, but not all are magnesium deficient. It seems to me that if a person is already deficient in magnesium then they will manifest symptoms of fluoride poisoning sooner than someone who is not magnesium deficient. For many processes in the body, even if a person is not calcium deficient, if they are magnesium deficient, the available calcium cannot be used without sufficient magnesium.

People who suffer from fluoride poisoning may manifest different severities of certain symptoms depending on how much aluminum they take in. The more people use baking powder, drink from aluminum cans, use aluminum foil (have you ever seen pin holes in foil you have taken off of some stored foods? Guess what, that food now has some dissolved aluminum in it), use alum or other aluminum containing deoderants, use aluminum cookware - the more aluminum could be transported to their brains by some mechanism involving the fluoride in their bodies.

[SnooZQ]

Hello All,

I've suffered from fibro for close to 3 yrs. I'm not cured yet, but I am much improved. My definition being, going from using a walker & frequent days in bed, to only occasional use of cane, & no days in bed.

I wish I could attribute my problem to simply a cal/mag deficiency. But I've taken cal/mag citrate chewable supplements faithfully for over a decade. The fibro showed up WHILE on the supplements. I suffered a trauma (root cause:stupidity) that didn't heal, and in time the localized pain spread & fibro was dxd.

My road to healing started with a couple of observations. #1 -- That my 4x/yr periodontal treatments were putting me to bed each time, for several days, with pain. #2 -- That every time I drank a cup of tea (lipton /black /pekoe /green /oolong types) I'd have a mini-flare within an hour. A little googling revealed that one possible common denominator was fluoride. The perio used topical fluoride to decrease sensitivity. And the tea plant has a tendency to concentrate fluoride in its leaves -- tea is quite high in fluoride.

I continue to have my perio work done, without the Fl solution, and without the high-fluoride "polish" at the end. No more days-in-bed following the procedures. Yeah!

I switched to nonfluoridated toothpaste & use only RO water for cooking & drinking. But I haul it, haven't been able to afford whole-house RO, so I still do use tap water for bathing. And this is another source of fluoride, since Fl is absorbed through the skin.

My hypothesis is that fluoridated compounds, as well as chlorinated & brominated compounds (another biggie for me) -- trigger my fibro pain in part by their action on the thyroid gland. Like many fibro sufferers, I've found that keeping my free thyroid hormone levels in mid reference range is critical to doing well.

Halogens like fluroide, chlorine, & bromine, are kissing cousins of iodine, another halogen. It has been shown that Fl, Cl & Br "fit" & bind to iodine receptors in the body -- and indeed, being more reactive, are quicker to do so than the clunkier iodine. This screws up both the thyroid gland, as well as the peripheral thyroid hormone receptors.

Bromine (as brominated ...)in used in bleached grains, and is also found in a number of food additives. Bromine is also used to bleach refined oils ... which I'd found cause me to flare when consumed in excess.

Unfortunately, it's hard to find a swimming pool that does not use a combination of chlorine & bromine for sanitation. Aquacize is so helpful for fibro ... but doing it a halogenated pool may not be beneficial for some, in the long run. An ozonated pool may be a better option.

But back to fluoride. For decades, docs used fluoride to suppress thyroid in seriously hyperthyroid people. Fluoride is one of the most highly reactive elements known ... think back to that high school chemistry. Fluoride, in even minute quantities will deactivate enzymes ... thyroid enzymes, muscle enzymes, digestive enzymes. Many respected scientists believe that fluoride does more harm than good. However, there are sociopolitcal powers in place ... and inertia among the general public, to improve the situation.

One natural remedy pioneered in India for fluorosis, and also used by vets for fluorsis in animals, is using tamarind. Tamarind has been shown to bind fluoride out, even from the long bones. When tamarind is consumed, fluoride is excreted in the urine. Tamarind is most easily found in Asian/Oriental stores, IME. There is also a Mexican tamarind, however most of the research I've seen has been done w/Asian tamarind. One could do worse than taking a little tamarind every day. It's a fruit with a date-like texture, but with a tart-sweet taste. Emphasis on the tart.

IMO, every fibro sufferer should look into whether fluoride & other halogenated compounds are increasing their pain. However, there is a lotta research to suggest that there are fibro sub-groups ... some with one kinda gene, some with another. Some with methylation defects, others not. Some with bacterial/viral triggers that when treated, resolve the fibro. Some with metabolic syndrome that, when treated, improves the fibro. Some with immunological & neurological findings, others not.

Now, it is possible that some day in the future, one common thread will draw all the fibro subgroups together ... and maybe that common thread will be fluoride. But the fact that not every person America has fibro, while most Americans have fluoride exposure, argues for a certain specialness in fibro sufferers ... whether they have increased levels of exposure to FL, or decreased ability to deal with it.

Fluoride & the halogens have been a part of my fibro healing, but not the whole story. Gluten was a culprit in my IBS, now GONE with GF diet. And, nightshade-free diet, which I've been on for only one month, has been very helpful for residual muscle & joint pain.

Best wishes.

[wasabi]

Thank you for a very informative post.

FYI, there is an excellent alternative to chlorine/bromine for sanitizing pools - hydrogen peroxide. I think it is more expensive though, and not many people use it.

Trying to tie fluoride poisoning in to fibromyalgia is much more complicated than I had supposed. I still think fluoride poisoning is likely the direct cause or a necessary contributing factor to the development of most cases of fibromyalgia.

Here is an excellent site that discusses many aspects of fluoride poisoning. The first url discusses the symptoms of chronic fluoride poisoning. The second url is an interesting story about one person's experience with fluoride poisoning:

http://www.rvi.net/~fluoride/symptoms.htm
http://www.rvi.net/~fluoride/000017.htm

As you suffer from gluten intolerance, I would draw your attention to the following statement from the link on fluoride poisoning symptoms:

"Fluoride is known to combine with HCl of the stomach and is converted to hydrofluoric acid. Hydrofluoric acid is highly corrosive. The stomach and intestinal lining (Mucosa) is destroyed with loss of microvilli (the structure which is responsible for absorbing the nutrients from food), drying up and cracking of the cell surface and mucus (the slimy substance required for comfortable bowl movements) production is hampered."

Could it be hydrofluoric acid which causes the gastrointestinal distress when for instance, children consume too much fluoridated toothpaste?

Could hydrofluoric acid be involved in gluten intolerance - in triggering gluten intolerance; in perpetuating gluten intolerance?

Could hydrofluoric acid be involved in acid reflux? If hydrogen fluoride (a gas) is also being produced, this could account for esophageal burning and larynx/vocal cord irritation even without liquid reflux. It is conceivable that if hydrogen fluoride is being produced, it could even affect the lungs (there is a significant correlation between acid reflux and asthma).

[wasabi]

You're right about tea. According to this article, tea can be very high in fluoride:

http://www.westonaprice.org/envtoxins/fluoride.html

"Fluoride content in tea has risen dramatically over the last 20 years due to industry contamination. Recent analyses have revealed a fluoride content of 17.25 mg per teabag or cup in black tea, and a whopping 22 mg of soluble fluoride ions per teabag or cup in green tea. Aluminum content was also high--over 8 mg. Normal steeping time is five minutes. The longer a tea bag steeped, the more fluoride and aluminum were released. After ten minutes, the measurable amounts of fluoride and aluminum almost doubled." (Analyses conducted by Parents of Fluoride Poisoned Children (PFPC) at Gov't -approved labs. Contact: pfpc@istar.ca)


At 1 part per million, it would take 22 liters of water to get as much fluoride as in one cup of green tea; and if you forget to take your tea bag out (I do that pretty often) you would have the equivalent of nearly 40 liters of fluoridated water in one cup of strong green tea...yikes!

Also rooibos (Masai) tea is high in fluorides.

[SnooZQ]

Thank you for the links, Wasabi. The thought of hydrofluoric acid inside the human body ... yikes! I did take a little chem & biochem in college.

There are cases of villi destruction in the absence of celiac antibodies. Sometimes this is known to be attributable to an infection, or to use of NSAIDs. But sometimes, the cause just isn't known. I wouldn't be surprised at all if fluoride might contribute.

Best wishes.

[wasabi]

The following statement by Dr. Phyllis Mullenix, Ph.D. is significant because sleep disturbances are a major problem with fibromyalgia sufferers.

"The new data showing fluoride's impact on melatonin biosynthesis, and the high concentrations in the human pineal gland, should be a real eye opener for many. I am ill at ease with this enzyme poison (fluoride) being that close to the hypothalamic-pituitary-axis functions in the body."

http://fluoridealert.org/pmullenix.htm


Fluoride exposed children have been found to have kidney and liver damage. The body's inability to filter out or detoxify certain chemicals could be a part of the fibromyalgia syndrome:

http://www.fluoridealert.org/health/news/30.html

[wasabi]

I would like to suggest a reason why fluoride poisoning could cause fibromyalgia especially in the case of muscle injury caused by severe overexertion or severe muscle trauma.

Suppose someone is ingesting an amount of fluoride that the body is barely able to deal with. Then the person suffers a severe muscle injury. How could this cause fibromyalgia? If the muscle injury caused a significant decline in kidney function, it would allow for a greater buildup of fluoride in the body, because the kidneys are the main way that the body (slowly) rids itself of fluoride. Check out this link which has to do with exertional rhabdomyolysis in horses. I would like to point out that rhabdomyolysis (would it be fair to call it muscle disintegration?) and kidney damage are both known side effects of fluorine containing statin drugs. Maybe fibromyalgia sufferers wake up feeling so beat up, because they have been - only on a wide-spread but micro scale:

http://shady-acres.com/susan/tying-up.shtml

[SnooZQ]

Great info, Wasabi, thanks for posting.

I'd just assumed that the F directly interfered with the muscle enzymes, as well as with the hormones that facilitate anabolic processes. But your analysis of the fibro/exertional injury/fluoride connection is unequal to anything I've seen in past, and I think, deserving of merit & investigation.

Do you have any additional suggestions for "the way out" of this, other than avoidance of F & supplementation w/mag & boron? Do you have experience with animals & rhabdo -- & if so, what else is recommended.

I'm not sure how to handle the F in shower/bath water, other than brief showers, tepid water. Sponge baths with hauled R/O water? -- doesn't really appeal.

Best wishes.

[wasabi]

I thought I would share with you a hypothesis I have concerning fibromyalgia. It goes like this:

Fluoride poisoning causes varied and widespread ischemia. Varied and widespread ischemia cause many of the symptoms of fibromyalgia.

From Answers.com:

Ischemia - A decrease in the blood supply to a bodily organ, tissue, or part caused by constriction or obstruction of the blood vessels.

What would the result of ischemia be? Basically, there would be two main effects. Certain substances would not be supplied to a certain group of cells at a rate that they require. Other substances would not be removed from a group of cells at a rate they require. The group of cells would suffocate for lack of oxygen. They would starve for lack of food supplies. They be ill-repaired for lack of proper building supplies. They would be intoxicated because of a buildup of waste products and abnormal levels of substances produced by cells in distress.

If brain cells were intoxicated, suffocating, starving, and ill-repaired - a person might very well experience fibro fog, even permanent memory loss (a side effect of statins)

If muscle cells were intoxicated, suffocating, starving, and ill-repaired they might very well be fatigued, cramped (a sign of ischemia), and painful even at rest. If forced to work hard under ischemic conditions, they would even fare worse. (heart problems, rhabdomyolysis are a side effects of statins)

If liver cells were intoxicated, suffocating, starving, and ill-repaired one might very well expect damage to the liver's ability to detoxify chemicals in the blood.


If nerve cells were intoxicated, suffocating, starving, and ill repaired they might very well function poorly and be hypersensitive to pain.

This is just a hypothesis at this point, but I hope to be able to build a case for it over time.

[wasabi]

I wish I had any kind of expertise in the area of health sciences, but I don't - just one college course in chemistry and one in biology many years ago. I am posting stuff about fibromyalgia almost as soon as I come across it on the internet. But here are a couple of things that you might consider.

Even though I do not have fibromyalgia, I am not as energetic as I would like to be. One thing that helps me a lot - both for helping me take fewer naps and also for helping to make my thinking clearer - is chia seeds. This is the article that got me interested in consuming chia seeds:

http://www.thechiaco.com.au/history.htm

If you want to try out smaller amounts, you might be able to get it from your health food store. But this is where I order mine from - 10 lbs. at a time. For my wife and I, we use about 1 oz. per day for the two of us:

I put a little less than 16 oz. of water in a shaker, add 1 oz. of chia seeds and shake thoroughly. I drink 4 oz. of the mixture twice per day. Chia seeds are a source of omega 3 fats.

It is possible to get a whole house fluoride filter. The filter contains some kind of aluminum compound which grabs onto the fluoride. If you want to drink your tap water, you will need to further filter the water to eliminate any aluminum that escapes from the fluoride filter. It's not cheap though.

[wasabi]

Here is an article that describes well the idea that fibromyalgia is connected with muscle cells going anabolic. It is just that the author attributes the cause to viral infection rather than ischemia caused by fluoride poisoning:

http://www.krysalis.net/chronicfatigue.htm

I realize that my hypothesis that fluoride poisoning causes ischemia which in turn causes many fibromyalgia symptoms is rather simplistic. But I hold to it as a useful starting point for understanding fibromyalgia. I can't quite get my head around what the following article is saying, but I believe that it has something important to say about one key biochemical process I would also attribute to fluoride poisoning since I believe that fluoride poisoning and fibromyalgia are one and the same thing:

http://www.mcs-america.org/review.pdf

One could say that this idea of a haywire NO/ONOO cycle as a result of fluoride poisoning is hinted at by the following research results:

http://www.ingentaconnect.com/content/els/13826689/2003/00000013/00000003/art00002 (This is a reference to just the title of a research paper)

http://journals.tubitak.gov.tr/veterinary/issues/vet-04-28-3/vet-28-3-20-0302-24.pdf

[wasabi]

I want to thank people for reading this thread. I want to especially thank people who have posted to it. As I said, I really don't have much in the way of qualifications to research fibromyalgia stuff on the internet. I just feel that this is something God wants me to do. You are a great encouragement to me. God bless you all.

Wasabi

[SnooZQ]

Wasabi,

I looked at the article on F poisoning in guinea pigs. I guess I wonder why the common lab findings like hematocrit, Ca level wouldn't be screwed up in humans (me) like they were in those piggies. I'm guessing I have a lower level contam, or more of a chronic prob rather than an acute toxicity.

I wonder whether some kind of "challenge" test could be done for F as they do for heavy metals, like mercury.

I appreciate the advice on the water filters. Hadn't heard about the Al one, only the reverse osmosis. Also, I am familiar with chia seeds, and use them on occasion. Haven't been extremely impressed with what they do for me, however I appreciate their historic value & know they are extremely nutritious.

Although I know that for myself, F is definitely one of my fibro triggers, I am troubled that in several yrs. of talking up the fluoride hypothesis among fellow sufferers, virtually none of them has found F to be a trigger. A few (not all) have done F elimination, without observable change. So, I gotta wonder.

There is quite a lot of research showing a significant subset of fibro sufferers having low-grade viral infections, and companion research showing good improvement in fibro symptoms when this subgroup is given antivirals. Not generally recognized in clinical med yet, though. Whether there is an effect immunologically from the F -- quite possible, given its widerangeing nasty effects.

I am very concerned at the impact of fluoride on all people & the entire environment. I've even panned moving to one locale where an aluminum smelter was located. Al smelters put out TONS or airborne F, and a lot of it settles into the soil, gets into the groundwater.

There is so much groupthink in the clinical communities, dental & med, that sometimes I despair. One of my periodontal hygienists has MS & is married to a physician. She noted my refusal for topical F & inquired why ... "educating" me of how safe the fluoride really was ... to which I respectfully requested she search Medline or Google Scholar ...

Keep up the good work, Wasabi.

[wasabi]

I don't know how many anesthetics contain fluoride, but there is at least one:

http://stinet.dtic.mil/oai/oai?&verb=getRecord&metadataPrefix=html&identifier=AD0751430

And at least one sedative (Isoflurane):

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=2317417&dopt=Abstract

[wasabi]

Although I am focused on making the connection between fibromyalgia and fluoride poisoning, I realize that fluoride poisoning may be only one of several causes or perhaps a supporting cause of fibromyalgia. So, I would like to digress a bit and share a couple of alternate theories about fibromyalgia. One theory is proposed by a chiropractor who believes that fibromyalgia is caused by a misaligment of the base of the skull and the uppermost neck vertebra. (you need to login to Dr. Whitcomb's website to see the info - starting with What is Fibromyalgia)

http://www.stopfibro.com

Another theory proposes that fibromyalgia is caused by scar tissue, or fibrosis which in turn causes ischemia. This article makes a good point: "Pain meds have no effect on relieving the pain of ischemia!" If this is true, it would explain why many fibromyalgia sufferers suffer severe pain, even while taking larges doses of powerful pain meds.

http://www.systemicenzymetherapy.com/TherapeuticApplications/Fibromyalgia.htm

To test out the second theory, one could try taking Neprinol. Be sure your doc approves of taking Neprinol. Since it gets rid of excess fibrin, it can have an impact on your blood's clotting ability - especially if you are already taking anticoagulants. Also, Neprinol is not cheap:



Also try doing suitable moderate low repetition resistance exercises, again with your doctor's approval.

Now, some people believe there is a viral component to fibromyalgia. Therefore, you might also consider taking coconut oil at the same time. The following article discusses research documenting reduced viral loads from taking coconut oil (for HIV):

http://www.doh.gov.ph/SARS/coconut_oil.htm

[Chemar]

wasabi

there is coconut derived anti-microbial available called MONOLAURIN (made by Ecological Formulas) which is lauric acid supplement

re Fluoride....when my son (who has Tourette Syndrome) had his first and last ever fluoride treatment at the dentist years ago, it made him jittery and nauseous for days thereafter

we avoid all fluorided products wherever possible

[wasabi]

Thanks for the info about Monolauren. I happen to really like coconut oil, but there may be others who prefer getting this ingredient by itself.

Here are some other potential sources of fluoride that you might want to avoid:

Insecticides

Refrigerants and propellants. The aerosol propellant, 1,1,1,2-Tetrafluoroethane is not supposed to cause any symptoms at low concentrations. Yet... (see section titled "Ringing in Ears"):

http://fluoridealert.org/pesticides/effects.various.f-pesticide.htm

By the way, before 2001 when PFOS chemicals were supposed to be phased out, you could have been exposed to fluoride from insecticides like Raid, and even from Scotch Guard:

http://fluoridealert.org/pesticides/lithium.perfluoro.sulf.page.htm

[wasabi]

As I mentioned at the very beginning of this thread, I believe that supporting the kidneys is very important in cases of fluoride poisoning/fibromyalgia. Here is something that can help:

http://www.nlm.nih.gov/medlineplus/print/druginfo/natural/patient-pycnogenol.html

My wife and I use a product called Moducare.

[wasabi]

Any asthma sufferers who use fluorine containing propellants in their inhalers could also be getting fluoride in their bodies. (see section titled "Ringing in Ears"):

http://fluoridealert.org/pesticides/effects.various.f-pesticide.htm

http://schoolasthmaallergy.com/html/inhaler/index.html

[wasabi]

I am having a hard time deciding whether or not to post the following link. I believe the information on fluoride toxicity and its effects is excellent. On the other hand, the author has some material especially in other articles on his site that are religiously and politically objectionable. I do not endorse any of his religious or political views. I am reluctant to give extra exposure to this site by this link. On the other hand the material on fluoride is extremely important. And I really don't have the time to go through his articles and post relevant bits of information piecemeal. Please read this material critically. Remember, just because he's a smart guy doesn't mean you have to agree with all of his conclusions:


MODERATOR NOTE! sorry.........that link had to be removed.........the material on there may be highly offensive to many of our members.

[Chemar]

I just want to add to that disclaimer!!:eek:

There may be some interesting fluoride stuff on those last three links but there is also a LOT of errrrrrr strange commentary so reader beware....you are entering a zone where you truly need to discern fact from fiction!!:Scratch-Head:

[wasabi]

I am satisfied with the strong connection between fibromyalgia and fluoride poisoning that I have documented. I need some time to digest the material I have presented. I also need some time to attend to personal matters I have neglected while researching this topic - I tend to be pretty obsessive about doing research on the web. After a few weeks or so, I hope to start a new thread on what things might be helpful for fibromyalgia/fluoride poisoning. Of course, if I come across anything helpful for establishing the connection between fibromyalgia and fluoride poisoning I will post it on this thread. But, from now on my focus will be on what might be helpful to sufferers of fibromyalgia/fluoride poisoning.

I would like to look into the following, among other things:

Avoiding:
fluorides, mercury, aluminum, and excess iron

Supplementing with:
aloe vera, alpha lipoic acid, apricot kernels, boron, raw cacao, chia seeds, coconut oil, vitamin D, glutathione (GSH Complex), colloidal gold, IP6, magnesium taurate, Neprinol, pine bark extract (eg. Moducare), sea buckthorn, SOD

Receiving:
massage, chiropractic care (particularly to areas that affect the base of the skull and uppermost vertebra)


Again, I wish to thank those who take the time to read what I have posted, and especially those who have posted responses. God bless you all.

wasabi

[Doody]

This all sounds so very interesting. I can't even begin to imagine what may have triggered my fibro as I've had so many of the 'symptoms' before ever having been diagnosed with the fibro.

I had ulcerative colitis rear it's ugly head 30 years ago and wasn't expected to live through the first bought. But, I had a lot of trauma to my body well before the onset of the UC and after. A LOT of body trauma from one thing or another from beatings in my early 20s to numerous car accidents and untold number of falls that hurt some part of my body.

This fluoride idea is very interesting. Thanks for all the info.

[wasabi]

Could fluoride in the gut cause Paneth cells to continually release bacteria killing substances unnecessarily, thus harming stem cells and/or other cells of the small intestine villi? This could explain why fibromyalgia is often preceded by or accompanied by digestive problems.

http://www.springerlink.com/content/r52xvv58wv62207m/

[wasabi]

I think this is all very interesting, and really applaud the fact that you would care enough to go to the trouble to help others with a condition you do not have.

But one thing bothers me. What about people like myself who suffer from secondary fibromyalgia? I never had a symptom a day in my life until I developed a chronic pain condition in my abdomen. A year after that the fibromyalgia set in, with all the symptoms, all the tender points and everything.

At that time I did a lot of research myself, and spoke to or e-mailed a number of well-know rheumatologists to try to find a way to treat or cure the fibro despite my chronic pain. The most common answer I got then was that fibromyalgia, at least like mine, is most likely caused by a disruption in the normal cycle of living caused by my chronic pain. I couldn't sleep, eat, work or exercise in any normal pattern, and this caused a huge upset in how my body functioned, leading to FMS.

Do you think there could be more than one cause, or more than one condition that mimics fibromyalgia? From what I've read, it's the tender points more than anything else that confirms the diagnosis, and I have them all. But mine have never been as terribly severe as those of others I've read about here. Any thoughts on that?

I am beginning to think that fluoride poisoning is only one possible cause of fibromyalgia. I think that trying to tie ischemia and fluoride poisoning to fibromyalgia was a very good place for me to start. I am now starting to wrestle with the cause of fibromyalgia from a broader perspective - perhaps too broad. But it's a good way for me to continue my investigations and ruminations. I can always make another course correction later on.

What I am now thinking is this, fibromyalgia is the result of incomplete healing. Fluoride poisoning fits into this idea of incomplete healing in two ways. First, in high enough quantities, fluoride can cause serious wounding of the body. Second, even in relatively low quantities, fluoride can interfere with the body's messenger chemicals, keeping certain processes clogged in the on position. This could prevent the body from turning off certain responses to wounding such as the production of substance P. I don't have any hard evidence yet to back up my idea, but it just kind of makes sense to me at this point. There are many ways in which the body can be wounded, so yes, I now believe there are multiple causes of fibromyalgia.

Your abdominal pain is an important part of your health condition. Not knowing the cause makes it difficult to even try to answer your last question. Fluoride poisoning can cause digestive problems. If something caused your sympathetic nervous system to work overtime - heart rate up, blood pressure up, muscles ready for fight or flight - that could affect your digestive system even possibly leading to leaky gut (by keeping blood flowing to your muscles instead of your digestive system). I am still trying to make a connection between fluoride poisoning and ischemia in muscles. Regardless of cause, some sort of ischemia could account for your painful tender points. Whether or not an overabundance of some sort of chemical messengers produced when one part of the body is seriously wounded can cause ischemia in other parts of the body (when the wound fails to heal for a long time) - I just don't know.

One more thought, mental stress and chronic pain can lead to magnesium depletion. Magnesium is required for muscles to relax. Magnesium deficiency can cause muscles to be chronically tensed which can lead to ischemia, which can lead to pain. I use magnesium taurate as my magnesium supplement. If the pain in your tender points is not severe, massage could also be very helpful.

[wasabi]

As you say, the tender points are a diagnostic tool. What they signify to me is a persistent, pervasive (all over the body) overcontraction of muscles. I am not familiar with using the tender points to diagnose fibromyalgia, so I can't say for sure, but it seems to me that these tender points are points near where various muscle groups attach to bone. If this is the case, then pain at these points can be caused by tight muscles with restricted range of motion such that normal activity causes stress at the attachment points. Fibromyalgia is not about the tender points, it is about tight muscles that will not lengthen to accomodate normal range of motion.

The million dollar question is what causes the tightening of these muscles? As I mentioned earlier in my thread, I am pursuing the idea that ischemia is involved in the involuntary tightening of muscles. So, I ask myself this question - is there something that can cause the tightening of arteries which causes ischemia which causes voluntary muscles to tighten and also causes pain. Apparently, fluoride can cause artery tissue to tighten:

http://jpet.aspetjournals.org/cgi/content/abstract/258/1/66

One person, Walt Stoll, believes that fibromyalgia has to do with being in a state of sympathetic nervous system dominance (severe chronic "bracing" he calls it), which causes the muscles to be chronically stressed. I don't believe that this is the cause of fibromyalgia, but sympathetic nervous system dominance for whatever reason, could be a part of the problem of fibromyalgia.

[wasabi]

If you are one of those people who believe that Fibromyalgia and Mycoplasma are connected then here is a link that you might be interested in:

http://www.newtreatments.org/doc.php/Mycoplasma/29

[wasabi]

Has anyone investigated the relationship of CFS and ciguatera fish poisoning?
A 96% correlation is pretty high! Here is a place to start:

http://www.ncf-net.org/forum/CiguateraEpitope.htm

Tea tree oil and mycoplasma pneumoniae:

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=11828621&dopt=Abstract

[wasabi]

Is there a connection between Lyme Disease and Fibromyalgia? Lyme Disease and ALS? Lyme Disease and Parkinson's? Here's some good information:

http://www.springboard4health.com/notebook/health_lyme_disease.html#breakthrough

If there is, then cat's claw (especially TOA free cat's claw) could be helpful. Note that it could take up to a year to restore health because:

"Considering the life-span of intracellular forms of Bb equivalent to the life-span of the cells invaded by these forms, they are constantly released into the surrounding environment upon natural cell death and destruction. The release of intracellular forms of Bb is gradual over time due to the various life-spans of various invaded cells. Since about 90% of these forms reside in various cells (including all blood cells) which have a life-span of 2-3 weeks to 6-8 months, it may be assumed that within a 6-8 month period, a significant majority of all intracellular forms of Bb will be released into the environment where they can be successfully attacked by a properly functioning immune system and a natural powerful antibiotic."

"Bb" refers to Borrelia burgdorferi, a mycoplasma bacteria that causes Lyme disease. There may be other bacteria involved as well.

[Chemar]

that is a very interesting article re the Lyme Disease info wasabi

would you mind also posting this on the Lyme Disease board here at NeuroTalk
http://neurotalk.psychcentral.com/forumdisplay.php?f=33

[wasabi]

Here is what one person suspects about her abdominal pain and what helped her:

"Two weeks ago my Doctor prescribed Wel-Chol(I don’t have high cholesterol-it’s actually VERY low), and my abdominal pain [of 17 years duration] is virtually gone along w/ several other bothersome sysmptoms! I believe that most, if not all, of the chronic conditions I developed manifested because my gallbladder harboured biotoxins very early on."

http://fattyacids.wordpress.com/2006/09/09/biotoxins-are-neurotoxins/#more-5

Wel-Chol works by binding to cholesterol in the intestines so that the liver can't keep recyling it (and presumably the toxins that adhere to that cholesterol). Interesting idea - as long as you don't have any bowel obstructions.

[wasabi]

Here is a link with more information related to Fibromyalgia and Mycoplasmas:

http://www.thepowerhour.com/news/mycoplasma_testing.htm

[wasabi]

I now think that my fibromyalgia symptoms are due to a chronic Lyme disease problem. Besides quite a number of supplements for general health, I am doing three specific things to deal with my self-diagnosed Lyme disease. I am avoiding fluoride where possible. I am taking boron supplements. I am taking seabuckthorn. So far, after almost a week, I am experiencing significant improvements. I will report back after my improvements have leveled off some. In the meantime, I think anyone with Lyme or CFS/FMS should seriously consider seabuckthorn (tea, seed oil, fruit oil). I am not supposed to give you links to commercial sites, so all I will say is that one producer of seabuckthorn products has some good background information in a section titled "Seabuckthorn Science."

[wasabi]

I have decided to add olive leaf extract (to deal with what I suspect are reactivated viral infections - warts and possibly measles in the gut). I have also decided to add the methyl form of vitamin B12 to help with nerve and brain issues. That was yesterday. Today, I woke up kind of punchy, with more sensitivity to sound than usual. I take these increases in my symptoms as a good sign. I remain hopeful.

[jccgf]

Here are some links I've found while researching celiac disease in regard to fibromyalgia and diet/ food sensitivities/ gut health. People with celiac disease are sometimes misdiagnosed with fibromyalgia before celiac disease is discovered.

Fibromyalgia: Elimination Diet May Ease Fibromyalgia (http://www.celiac.com/st_prod.html?p_prodid=120&p_catid=&sid=91hH9H0-0EpQAsL-15104382228.fb)

Chronic Fatigue, Irritable Bowel Syndrome Mistaken For Celiac Disease ImmuneSupport.com (http://www.immunesupport.com/library/bulletinarticle.cfm?ID=5439&PROD=P205)

FIBROMYALGIA: WHAT DOCTORS DON'T KNOW OR TELL PATIENTS (http://www.cpmission.com/main/gluten.html)

Is it FMS, CFS, or Celiac Disease? (http://www.geocities.com/HotSprings/Spa/4003/diagnosis.html)

Nutritional Healing on CFS/FMS (http://www.nutritional-healing.com.au/content/condition.php?condition=CFS/FMS)



Also some PubMed abstracts that may offer some insight into how intertangled these conditions can be~


Patients with fibromyalgia (FM) frequently have gastrointestinal symptoms and signs. This article critically reviews the available literature and concludes the following: evidence that inflammatory bowel disease is associated with FM is contradictory, but should be looked for in patients taking concomitant steroids; patients diagnosed with celiac disease often have a history of FM or irritable bowel syndrome (IBS) that may or may not be present; reflux, nonulcer dyspepsia, and noncardiac chest pain are common in FM patients; medications used to manage pain, inflammation, and gastrointestinal complaints confound the management of FM; and IBS affects smooth muscles and the parasympathetic nervous system, while FM patients have complaints of striated muscles and dysfunction of the sympathetic nervous system. Of those patients with FM, 30% to 70% have concurrent IBS.
Fibromyalgia: the gastrointestinal link. (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=15361320) PMID: 15361320 Oct 2004

In the initial survey (N = 1032 respondents), the median age at onset was 46 years, and the diagnosis of adult celiac disease was often delayed (median 12 months, with 21% delayed over 10 years). Only 32% of adults were underweight, and only about 50% reported frequent diarrhea and weight loss. A second survey documented that common presenting symptoms were fatigue (82%), abdominal pain (77%), bloating or gas (73%), and anemia (63%). Initial physician diagnoses were often irritable bowel syndrome (37%), psychological disorders (29%), and fibromyalgia (9%)
Presentations of adult celiac disease in a nationwide patient support group. (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=12741468) PMID: 12741468

Results indicate that 70% (14/20) of the PFM patients had IBS and 65% (13/20) of the IBS patients had PFM. In conclusion, these results indicate that PFM and IBS frequently coexist. A common pathogenetic mechanism for both conditions is therefore suggested.
Primary fibromyalgia and the irritable bowel syndrome: different expressions of a common pathogenetic process. (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=2049586) PMID: 2049586

Coeliac disease is a common finding among patients labelled as irritable bowel syndrome. In this sub-group, a gluten free diet may lead to a significant improvement in symptoms. Routine testing for coeliac disease may be indicated in all patients being evaluated for irritable bowel syndrome.
Coeliac disease presenting with symptoms of irritable bowel syndrome (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=12869084). PMID: 12869084

An association between irritable bowel syndrome (IBS) and small intestinal bacterial overgrowth (SIBO) has been found.
A link between irritable bowel syndrome and fibromyalgia may be related to findings on lactulose breath testing. (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=15020342) PMID: 15020342

This dietary intervention shows that many fibromyalgia subjects can be helped by a mostly raw vegetarian diet.
Fibromyalgia syndrome improved using a mostly raw vegetarian diet: an observational study (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=11602026) PMID: 11602026

The elimination of MSG and other excitotoxins from the diets of patients with fibromyalgia offers a benign treatment option that has the potential for dramatic results in a subset of patients.
Relief of fibromyalgia symptoms following discontinuation of dietary excitotoxins. (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=11408989) PMID: 11408989



Cara

[wasabi]

Cara,

Thank you so much for your response and for the links. It is self-diagnosed, but I do believe that I have celiac disease. I have been on a pretty much gluten free diet for about 2 years (towards the beginning I kept trying to eat just a little piece of bread for communion). I have experienced a huge benefit being on a gluten free diet. But not everything got better.

As I have researched my fibromyalgia symptoms, I have come to realize that I got Lyme disease over 40 years ago. I got the classic bull's eye rash (which I had forgotten about because at the time I thought it was ringworm), bad flu-like sickness and a dry cough that lasted for months. Then fatigue, memory problems and joint pain.

I agree with the thought expressed in one of your links: "Primary fibromyalgia and the irritable bowel syndrome: different expressions of a common pathogenetic process." I think that something about Lyme disease triggered my gluten intolerance. The idea I am playing with is that Lyme disease messed up my immune system so that measles was able to establish or reestablish itself in my gut.

Thanks for the links. I am glad to know more about celiac disease.

By the way, no MSG or artificial anything for me.

[jccgf]

You're welcome, wasabi~

Your mention of Lyme Disease does not surprise me. It seems a fair number of people who have lyme disease have gluten sensitivity, too. I've been told people have noticed and discussed this on Lyme Disease boards as well. We've had quite a few conversations on GS/CD board trying to decide what really comes first. Does gut damage (leaky gut) from lyme disease set the ball rolling to develop gluten sensitivity? Or does the gut damage, nutritional deficiency, and compromised immune system from gluten sensitivity/ celiac disease... cause one to more easily succumb to lyme disease (and other things, like h. pylori, sibo, etc)? Seems like it can be rather circular.... perhaps go either way... but does frequently occur together.

In any case, we've had a few members pass through the GS/CD who have had both lyme disease and gluten sensitivity (and b12 deficiency, too!). These conditions can all cause similar symptoms, and all of them must be treated in order to get well.

I've also known a few who were diagnosed with fibromyalgia first, but improved only after discovering and treating the celiac disease. It can be a long process for people to uncover these co-existing conditions... one by one, over time. They may not always go together, but sometimes they do... and they all need to be diagnosed and treated.

Cara

[wasabi]

Here is a short article that talks about the importance of glutathione:

http://www.dfwcfids.org/medical/whey.html

By the way, in addition to the expensive Immunocal, ImuPlus, or ImmunePro, the Fat Flush Whey Protein Powder claims to be undenatured as well - it only costs somewhat more than normal whey protein powder for bodybuilding etc.

[SnooZQ]

Wasabi & all,
Have you encountered any research comparing "regular" whey with the special undenatured stuff? I have a teen on the spectrum with documented glutathione glitch, and he does much better with his "body builder" whey powder than without it. He uses Designer Whey French Vanilla, one of the few that doesn't have artificial sugars (this one uses stevia).

Thanks for your thoughts.

[wasabi]

SnooZQ,

I really don't know about the research. What I've read has been based on Immunocal. I believe that most all whey proteins would help raise glutathione levels. I would guess that there is a difference between the various products' effectiveness. Immunocal, ImuPlus, ImmunePro, and GSH Plus are able to charge a huge premium for their products.

According to the GSH Plus literature the active components are "Concentrations of 3 bioactive proteins contained in the milk serum: Thermolabiles, serum albumin, alpha lactalbumin and lactoferrin."

Furthermore, "In the manufacturing of other whey proteins several things happen: in the process of heating and pasteurization critical bonds holding the cysteine molecules together are broken, thus destroying or diminishing the very proteins that serve to raise glutathione levels most effectively. We've developed a process by which these delicate proteins remain intact in their natural form to serve us most effectively."

I am using Fat Flush Whey Protein because their process does not denature these "delicate proteins." By the way, Fat Flush Whey Protein is sweetened with stevia and inulin.

About your son's Designer Whey Protein. If you go to the News and Press section on their website and click on "Whey - Protein's Role," you will read that in the portion of Designer Whey Protein made up of WPI whey protein isolate, "obtained using a unique pressure-driven ultra-filtration technology. The company says that WPI fractionated by pressure-driven ultra-filtration keeps intact components such as glycomacropeptide, which can aid dieters in curbing and controlling their cravings, as well as the anti-bacterial lactoperoxidase and the anti-microbial, anti-inflammatory, immune system-boosting fraction lactoferrin."

If you click on "Why Whey" in the "Whey Information" section you will read in section "4" that, "Also, in recently released clinical blood tests, hard-training athletes stacking 6 scoops of DESIGNER WHEY per day increased glutamine blood levels an incredible 15% during a sustained 28 day training period (1). These blood tests are even more remarkable considering glutamine levels have been shown to drop 55% after an intense workout. Even a 26% drop in glutamine levels results in an 11% decrease in protein synthesis, and therefore, a decrease in muscle growth (2)."

Glutamine is a precurser to glutathione, so there's a good chance that Designer Whey helps with building up glutathione levels too. Especially because he is probably consuming large amounts of Designer Whey, he is also getting a lot of the bioactive ingredients that go into building up glutathione levels.

You may also be interested in this article titled, "Augmenting Glutathione in Chronic Fatigue Syndrome"

http://phoenix-cfs.org/Glutathione%20Building%20in%20CFS.htm

Here's another thought. Donna Gates, who developed the Body Ecology Diet believes that "Body Ecology has a much more valuable approach for unlocking the mystery of autism. Our theory is that the missing piece lies deep within the intestinal walls and includes conquering systemic fungal and viral infections.
Indeed I believe autistic children are suffering from a gut and brain infection that creates neurological dysfuction, which can be corrected with time. The research needs to be focused in this direction, rather than focusing on mercury." By boosting glutathione, the Designer Whey Powder may help your son to fight gut and brain infections and thus improve his health. Here is Donna Gate's article, "The Myths and Truths of the Mercury/Autism Connection":

http://www.bodyecology.com/06/11/23/myths_truths_mercury_autism_connection.php

I am taking olive leaf extract, and now undenatured whey protein powder because I believe I have a measles or some other chronic viral infection in my gut.

[SnooZQ]

Hi Wasabi,

Thank you very much for researching & clarifying this info. I think for now, for financial reasons, we will stick with the DW, as it is quite inexpensive compared to the alternatives: $15 for 2.5 pounds -- by my reckoning, about $ 0.33 per serving based on the recommended 15 gram serving.

Keep up the good work. I hope your olive leaf extract experiment is helpful.

[AUGOLDMINER]

There may be a few cases caused by fluoride but most are probably due to a auto immune response by the body. Many people with fibro have a auto immune disorder or within 10 years will develop a autoimmune disorder.

The problem with some people is that there doctors never look for a autoimmune disorder they just blame all symptoms that someone with fibro has on the fibro.

Some autoimmune disorders can be completely masked by fibro like RA, Sjogren's.

If you have above normal CRP, ANA, SSa SSb or any auto immune type antibodies in your labs you most likely have a autoimmune disorder that caused your fibro.

When autoimmune antibodies attack your body they don't just attack the organs that are specific for that disorder. But may attack the CNS giving you fibro.

In my case the autoimmune disorder was a very rare autoimmune disorder called Castleman's Disease and it was found only becuse the doctor could not find a cause for the bad labs that he was getting instead of just blaming the fibro.

I believe my Castleman's was caused by trichloroethylene and the Castleman's caused the fibro.

[wasabi]

AUGOLDMINER,

Thanks for your response. I agree that a messed up immune system is part of the picture for fibromyalgia. I am not satisfied to stop there though. Being able to give a name to the particular way my body/immune system is messed up is only helpful if someone has figured out how to heal that named condition. I want more than a good diagnosis. I want to know why my immune system is messed up the way it is and what I can do to get well.

I also agree that fluoride may not be the single cause of fibromyalgia in many cases. For instance, I believe that my fibromyalgia symptoms are due to Lyme disease. But consider this:

Once in the body, fluoride is a destroyer of human enzymes. Being very highly reactive, fluoride hydrolyzes enzymes, thus changing their shapes. Since enzymes are proteins, once they are changed, they become "foreign-looking" to the immune system. The body then treats them as invaders even though they were originally produced by the body. This is an autoimmune situation, right?

Quoting from the definition of fibromyalgia used for this forum, "Fibromyalgia means pain in the muscles, ligaments, and tendons – the soft fibrous tissues in the body." What do these soft fibrous tissues have in common? The body's connective tissue is composed in large part of collagen. Fluoride prevents new collagen from being properly formed. In fact, fluoride doesn't just cause collagen to be wrongly formed, it causes collagen structures, like ligaments, tendons and, and muscles to be mineralized thus reducing their flexibility and making them crunchy sounding and painful. Fluoride probably causes collagen structures to be weaker as well.

I agree that not all of the pain of fibromyalgia comes from connective tissue. It likely is a central nervous system issue as well. I don't know where fluoride fits into the CNS picture. I just believe that many people who suffer from fibromyalgia would feel better if they avoided fluoride. If people have ingested a lot of fluoride over the years, they will have stored up a lot of fluoride in their bones - so even if they stop ingesting fluoride, it will take a long time before they stop suffering from the effects of fluoride.

You mention fibro possibly masking rheumatoid arthritis. Rheumatoid arthritis is an inflammatory condition right? My understanding is that fibromyalgia does not involve inflammation.

[wasabi]

"Dr. Donta presented the symptom lists for chronic Lyme disease, chronic fatigue syndrome (CFS), fibromyalgia (FM), and Gulf War Illness (GWI). He pointed out the similarities between them, and found there were few differences. He has treated hundreds of patients with these illnesses. He found that CFS and GWI have identical symptoms, and FM is only distinguished by a positive tender point exam, that is often positive in CFS and GWI as well. Clinically it is almost impossible to distinguish or differentiate these illnesses."

http://www.canlyme.com/fibrocfslyme.html

[wasabi]

Benefits and harms of doxycycline treatment for Gulf War veterans' illnesses: a randomized, double-blind, placebo-controlled trial.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=Abstract&list_uids=15262663

[Kaki]

Is it possible that fibromyalgia would have a connection with all of us (who has been diagnosed) by the type of water we drink by the years, the air we share or area which would be semilar everywhere and combined with our work experience and also our way of living.

The only thing I know so fare, that no body knows enough about it, except that we have live with it, talk about it, prove it even if not visible to others, try to reorganize our way of life depending the severity of the pain and the worst I felt so far is to find a doctor who will listen to you and will not tell you it's all in you're head, even if you have been hospitalized for two weeks because you couldn't feel you're toes, fingers, have pain all over so bad the the muscles would only quit on you.

For I believe that the first step is to find a professional who really listen to what you have to say, and from there who knows.........

[wasabi]

Kaki,

I'm sorry to hear that your fibromyalgia is so severe.

As I've said in earlier posts, avoiding fluoride is a good thing for fibromyalgia sufferers to do.

You said, "Is it possible that fibromyalgia would have a connection with all of us (who has been diagnosed) by the type of water we drink by the years, the air we share or area which would be semilar everywhere and combined with our work experience and also our way of living."

One thing that many of us have consumed or are consuming is aspartame. Here is a website that discusses the dangers of aspartame:

http://www.dorway.com/indexnew.htm

The other thing, which is true for me, is fibromyalgia symptoms caused by Lyme disease. If you want to know more about Lyme disease, see my thread, "Helpful Information about Lyme Disease" on the Lyme disease forum.

I pray that you will find a professional who can really help you overcome your fibromyalgia.

[wasabi]

Has Trevor Marshall identified the common denominator among the "no known cure" diseases of sarcoidosis, chronic fatigue syndrome, fibromyalgia, and chronic Lyme disease, and figured out a way to effect a cure?

"Multiple co-infections of antibiotic-resistant bacteria can act in unison because many of the species have evolved a similar technique for evading the immune system.

These bacteria live in the cytoplasm of phagocyte cells, and directly stimulate a protein called NuclearFactor-kappaB to cause the continuous release of inflammatory chemicals, a Th1 cytokine cascade. This is the source of the inflammation driving the CFS symptoms."

"Tiny 'pleomorphic' bacteria have been photographed living within the cells of the immune system of sarcoidosis patients." Of all the things I have come across so far, I believe that these tiny "pleomorphic" bacteria are the likeliest cause of fibromyalgia in general. I now believe that though fluorides and excitotoxins such as aspartame can produce fibromyalgia symptoms all on their own, in general they are secondary to these tiny "pleomorhic" bacteria (such as possibly mycoplasma fermentans).

The Marshall Protocol for Treating Chronic Fatigue Syndrome and Fibromyalgia: Hopeful Results Emerging:

http://www.immunesupport.com/library/showarticle.cfm/id/5784

[wasabi]

Presumably, the following ideas are not accepted by the government or the medical establishment, but they do make sense to me.

"If you are ill with these diseases [myalgic encephalomyelitis, fibromyalgia, multiple sclerosis or Alzheimer's], your red blood cells will not be normal doughnut-shaped blood cells capable of being compressed and squeezed through the capillaries, but will swell up like cherry-filled doughnuts which cannot be compressed. The blood cells become enlarged and distended because the only way the mycoplasma can exist is by uptaking pre-formed sterols from the host cell. One of the best sources of pre-formed sterols is cholesterol, and cholesterol is what gives your blood cells flexibility. If the cholesterol is taken out by the mycoplasma, the red blood cell swells up and doesn't go through, and the person begins to feel all the aches and pains and all the damage it causes to the brain, the heart, the stomach, the feet and the whole body because blood and oxygen are cut off."

I suspected that ischemia was behind the pain and weakness of fibromyalgia. If true, this would explain how the ischemia of fibromyalgia is caused - ischemia at the capillary level. This would also explain why even very light exercise, on a regular basis is helpful for fibromyalgia. It helps because the movement helps get swollen red blood cells through the capillaries and at least for a time, partially relieving the ischemia.

The most likely cause of many fibromyalgia symptoms is mycoplasma (artificially created or otherwise) causing ischemia possibly compounded by fluoride toxicity. This is what I now believe best explains the cause of fibromyalgia:

http://www.vaclib.org/basic/mycoplasma.htm

Here is a summary of the book, "The Brucellosis Triangle," by Donald and William Scott:

http://www.anapsid.org/cnd/activism/brucellosis-scott.html

[Diana]

Hello to all,

I have read all the pages here and am impressed by the knowledge! I have had fibromyalgia since the early 1990's. Mainly it causes pain in my neck and shoulders as well as migraine-type headaches. I can actually feel small knobby nodules all around my neck and shoulders which are painful when pressed. A few things have helped and I thought I'd share these -

Magnesium injections (same thing given to women in eclampsia) to relax muscles. The doctor gave these IM. They will cause a sore spot for a week or so on your bum but this method has no gastro upset like when taking magnesium tablets. I have had pain relief for 2-3 months.

Acupuncture. Helps with pain relief for anywhere from 2 weeks to a month.

Massage. Short term - about a week or so - but sure feels good!

Stretching exercises such as mild, gentle yoga will help along with a hot shower or heat pad on the sore areas.

I am interested in the discussions about floride - isn't floride a chemical by-product? I don't have floride in my water now - is there a way to get floride out of the body safely?

My stomach has recently been kicking up a fuss because of all the pain meds I've had to take because of surgery I had last year for an unruptured brain aneurysm. So, now I'm on more chemicals (Nexium and Immodium) - but I'm going gluten-free after reading the article posted here about that.

Thanks for all the great info; I'll keep reading with interest!

Diana

[reheman]

My name is Ron and I have no doubt about ALL the talk on Fluoride Poisoning.

I Started the ONLY Fluoride Poisoning Support Group on the web.


Message 3 at yahoo group FluoridePoisoning

Everything you have ever known or heard about Fluoride is false.
Fluoridated water is the biggest scam ever pulled on the WORLD and is
killing and sickining people everywhere..

I have been sick since 97 My symptoms did not start all at once but
became progressivly worse until the present.

Symptoms:
blurry vision - on and off not continously. got new glasses just
before I went for last MRI reading. Also looked for ICP by looking at
optic disc.

leg pains - hip, shoulder joints - I can't cross my legs - feels like
my joints are coming apart

muscle cramps and charley horses in calfs and arch of feet

mental confusion -short term memory - seems I really have to work at
remembering daily stuff

Headaches ( frontal)_ worse as day goes on

dizziness, like an airpane ride , disconnected , sometimes feels like
I am 3 feet off the ground or I am sitting sideways up on the wall -
no spinning vertigo

Brain fog - I suspect this is what alhzimers must feel like

tinnitus,-
otolaringologist says I have low frequency hearing loss

irritability - lashing out at family for no apparent reason
lack of concentration

can't sleep - up at 3-4 am and can't get back to sleep

Need to lie down in the afternoon - exhausted - feels like I am in a
comotose state - at times I can hear what is happening around me but
I can't respond

Getting fine tremmors in legs & eyelid

Dysphagia - throat feels swollen , hard to swallow at times - THROAT
GOES OPEN AND CLOSED -worse after exercise

cold hands & feet at times - cold all over at times

profuse sweating - sometimes I sweat like a pig for 15 min. after a
shower

No appitite - constant nausea - lots of bread & milk

muscle weakness & myalgic pain moving all the time

Lower back pain and neck pain comes and goes I don't think itis
linked to exercise

hands and heels really hurt at times

electric like shocks in left leg ( thigh, sometimes in feet and toes)
worst ones happen while I am
lying on couch watching TV - doubled over in pain

Fatigue is increadible - last two hours and consider it a good day!

Gums bleed , had periodontal disease

bone loss in jaw,- according to periodontist and dentist

teeth feel loose, USED TO BE ABLE TO WIGGLE THEM WITH MY TONGUE ,

drooling at times

Soft stools all the time -almost diarrhea

Getting pins and needles on chest and back after a hot shower and hot
days and exercise - started after surgery i think

Itching on arms and waist especially after a hot shower but other
times too

Seems like all this happens after I eat!!! things get worse and also
after exercise

chest pain in ribs on right side, then on left side

Heels really hurt as do my "heels " of my hands

longitudal ridges on finger/toe nails

History ( very brief- this is just the tip of the iceburg)

self diagnosed Chiari Malformation - my brains are swelling into my
spinal column - had decompression surgery in 2000 - symptoms
continued and worsened

self diagnosed Heavy metal poisoning - challenge test showed lead
mercury etc. - this was according to a holistic doctor and allopathic
doctors do not recognize these results. Chelated with DMSA - numbers
came down- still sick - then 10 weeks of EDTA IV thearpy - still sick.

Rhum. Doc diagnosis of Fibromyalgia - 6/02

self diagnosed Fluoride Poisoning - may 2002- one night I got sick
after dinner - and a couple of days later I thought back about what I
did different that nite - I drank three glasses of city water at that
meal instead of milk. Fluoride calcium seeks and makes it less toxic.

I did my own blind tests - I can pick out F water EVERY time - my
daughter can tell by my eyes if I have had 3 glasses of water!

I have confronted docs with this - Some look at me like I'm from
outer space, some belittle me, others just laugh.
My neurologist looked at me wide eyed and ordered serum and urine
fluoride tests. He never called me back. I went and got copies 3
weeks later and both were ELEVATED - my blood levels are 10x normal -
he has NOT dx me or schedualed another appmt.
Romhatoligist dx me with fibromyalgia and then I told her about
Fluoride - she doesn't want to see me again!


I found Dr. Myra Preston PHD - of SIBER IMAGING who has a patented
method of dx CFIDS through QEEG. I did before and after tests
dirnking my city water and I think I now have proof that F causes
brain damage in humans and is one of the causes of these "mysterious
syndromes" CFS,FM,GWS, MCS etc.
I scanned the report and will send it to you in another private
email if you wish, as it is 8 pages long.
Please give feed back if you can. I am willing to take this document
to court and start the fight against Fluorodation. I think this could
be the straw that breaks the camels back.



TEST RESULTS FROM DR PRESTON


Mine are unusual as I did two tests because my fluoronated city water
was making me sick. First test after staying away from as much F as
possible for 2+ weeks - second test after drinking my city water for
24 hours.

Highlights:

tested positive for all four variables to be classified as CFIDS
patient on both tests

Impression: RGE's QEEG prior to drinking water was abnormal. The
abnormalities are primarly in the ratios to total brain activation.
the prominence of slow wave activity is recorded in the delta and
theta frequencies. The lack of beta activity alsorepresents an
abnormal finding.

Following the exposure to water, RGE's delta activity increased,
theta activity decreased... Performance on these tests declined
sharply from the pre-to post water drinking... total brain function
declined in the post-water drinking QEEG.

Conclusions: Extremely abnormal QEEG due to the diffuse delta and
theta activity and the lack of brain activation in the beta range in
the frontal and temporal regions. This pattern correlates with the
patients report of severe cognitive loss. Abnormalities such as these
correlate with the limbic system and immune dysfunction, the fatigue,
the cognitive problems. It is important to note that the pre-water
evaluationwas quite abnormal, confirming the chronicity of the
patients illiness. The post-water drinking decline correlates with
the patients history of fluoride poisoning. Exposure to this toxin
exacerbated the neurophysiological disruption. ...

... RGE clearly exhibits diffuse brain dysfunction, which typically
results from a widespread condition such as a metabolic disease
including heavy metal poisoning. This indicates a neurotoxic
poisoning. Fluoride is a neurotoxin that acts on postsynaptic
receptors. This neurotoxic condition correlates with the disrupted
brain physiology and the secondary development od Chronic Fatigue
Immune Dysfinction and Fibromyalgia Syndrome.

I have seen every "oligist" on the planet it seems and the long version of my health problems are on posts/messages 5-10

[Gina466]

I think this is all very interesting, and really applaud the fact that you would care enough to go to the trouble to help others with a condition you do not have.

But one thing bothers me. What about people like myself who suffer from secondary fibromyalgia? I never had a symptom a day in my life until I developed a chronic pain condition in my abdomen. A year after that the fibromyalgia set in, with all the symptoms, all the tender points and everything.

At that time I did a lot of research myself, and spoke to or e-mailed a number of well-know rheumatologists to try to find a way to treat or cure the fibro despite my chronic pain. The most common answer I got then was that fibromyalgia, at least like mine, is most likely caused by a disruption in the normal cycle of living caused by my chronic pain. I couldn't sleep, eat, work or exercise in any normal pattern, and this caused a huge upset in how my body functioned, leading to FMS.

Do you think there could be more than one cause, or more than one condition that mimics fibromyalgia? From what I've read, it's the tender points more than anything else that confirms the diagnosis, and I have them all. But mine have never been as terribly severe as those of others I've read about here. Any thoughts on that?


You might want to check out the research of Dr. Daniel Clauw at the University of Michigan, if you have not already. He is a leading researcher in fibromyalgia. In some of his articles, he talks about how overemphasized trigger points are in the diagnosis of fibromyalgia and how he feels they should be eliminated from the diagnosis criteria all together.

I myself do not have all of the "required" trigger points shown on the diagram of the human body with trigger point references that you often see with an article explaining fibromyalgia. For some time, I also questioned whether I had the disorder because of the trigger point issue. I would let that point go in your mind as to the diagnosis. If your symptoms fit fibromyalgia, then, unfortunately, you most likely have it. It is a diagnosis of exclusion (excluding disorders or diseases it is not) and I assume you have had tests for those other illnesses that share some fibro symptoms (under active thyroid, lupus, etc.). But, in all my research, I have yet to come up with another condition that fully duplicates the sometimes strange, wavering, debilitating symptoms of fibromyalgia.

Good luck to you--and continue with your research. Knowledge, afterall, is power. Just be sure to check out the more "legitimate" sites on the internet, not ones that tout money-making "cures" or yet unproven remedies.

[Silvera]

Has also been linked to fluorosis, as well as some OTC green algae products.

I am sorrry to hear of this. Do any algae take up less fluoride than others?

What about the seaweeds used by the Japenese and macrobiotics?

Thank you.