History 1990 Touch Points Current Criteria Misdiagnosis The FM Test Why do I care? Take this page down! FAQ Contact

Fibromyalgia is not a diagnosis, it's a dangerous fad.

A fibromyalgia diagnosis means that you have pain and other symptoms and the doctors have no idea why. It's an "other box" for symptoms not easily diagnosed. Researching it is pointless, they are not going to find a common cause or cure. Who really thinks that every pain not easily diagnosed by modern medicine is caused by the same or similar things? It's cruel to tell these people they have a lifelong condition when WE DONT KNOW. This is good news to most people, but some people want to be sick.

The blood test for fibromyalgia is bogus and will eventually be taken off the market, hopefully with a class action lawsuit.

Many people think there is some kind of science behind their diagnosis because they had blood and imaging tests before they got it. This is reasonable, but not correct. All of those tests you had were to confirm that there is nothing wrong actually physically happening to explain your symptoms. Ask your doctor what lead them to believe you have fibromyalgia. Speaking of doctors, the only survey I could find showed 55% believing fibromyalgia is fake and 25% saying all fibro patients are faking it.

Doctors nowadays seem afraid to tell people that lifestyle issues like obesity, stress and sedentary lifestyles are causing their problems. I've never heard of a doctor actually telling a patient their pain is hypochondria or psychosomatic, one patient overhearing that fibromyalgia is code for this caused a firestorm of angry fibrobloggers. Very early in this project this woman explained how fibro is real because she went to doctor after doctor only to be told to see a shrink.

After they confirm there is nothing wrong with you, a quiz confirms that you have enough symptoms to qualify for the fibromyalgia diagnosis. When a doctor did the touch point exam they were not looking for anything, just applying 10# of pressure in an area not even standardized. Either touch points after 1990 or the quiz after 2010 The doctor just asks you questions, and your diagnosis is based entirely upon your answers. This has lead to a ridiculous amount of faking whiners being diagnosed with this, as well as people who are really sick being pushed aside.

There are no studies with more than 200 people that show any physical difference between people with fibromyalgia and the general population. There was a big stir about a difference in nerves in the hand, further scrutiny showed that these people actually had neuropathy. The studies to sell the fibromyalgia test were seriously flawed.

Some people say, I don't care what it's called, as long as I get a diagnosis. A diagnosis? There is great value in the right one. neuropathy is the body's warning of things like diabetes and hepatitis and should not be brushed aside as "fibromyalgia."

Speaking of neuropathy pain, it's a shoots up or down the arms or legs. It feels like a needle or electricity and happens seemingly randomly. There is no such description for fibromyalgia pain. Unlike actual medical problems, the pain is not described anywhere I've seen. I've had people tell me it was throbbing, constant, intermittent, muscle, joint, skin.. pretty much anything but a toothache. The touch points were not vague enough but the new pain zones cover most of the body.

Fibromyalgia is the new low back pain. It took some study or at least consistency to be diagnosed with low back pain, but if you just go to the doctor and start making up random symptoms they will call it fibromyalgia.

Technically "fibromyalgia" derives from New Latin, fibro-, meaning "fibrous tissues", Greek myo-, "muscle", and Greek algos, "pain"; the term literally means "muscle and connective tissue pain." That's not what it means anymore, doctors are diagnosing any pain as fibro. It might as well be Latin for hypochondriac, seeking pain pills, or misdiagnosed person.

History of Fibromyalgia

People have been bellyachin' since we first got bellies. In the early 1800's doctors wrote about a condition called “muscular rheumatism.” The symptoms were stiffness, aches, pains, tiredness, and difficulty sleeping. It was clearly labeled a psychiatric disorder. Others were diagnosed with Hysteria, which meant "wandering uterus." Doctors believed that the uterus moved from its normal place in the body.

About 1900 “fibrositis” was first described as physical problem where swelling caused pain in the body. Doctors were manually stimulating women to treat their Hysteria, which was oft diagnosed with fibrositis. This was so common that the electric vibrator was the 2nd appliance ever offered with electricity. The sexual revolution brought the hysteria diagnosis out of favor and they started calling it "the vapors."

It was thoroughly disproven that there were any swelling in these patients. In 1976 Rheumatologists met in Tampa to discuss an epidemic of chronic pain and fatigue and a vague condition called adrenal fatigue that they were suddenly being asked to treat. In that meeting they decided to rename adrenal fatigue to call it fibromyalgia and also refer to the mysterious pain as such. At that point fibromyalgia meant muscle pain, there was no official diagnostic criteria for it. Little was done initially to hide that this diagnosis was a catch-all.

1990 fibromyalgia Diagnosis

In the 1820's a Scottish doctor first described the touch points, a blatant ripoff of myofascial trigger points which are known from the stream of thought in ancient medicine that spawned acupressure to be sensitive. This paper went largely unnoticed until when 1990 Dr Frederick Wolfe teamed up with the American College of Cosmetologyst to write official diagnostic guidelines for fibromyialgia. First rule out other possible (read; real) medical conditions, then press on 18 vaguely described points on the patient with 10# pressure. The doctor is not feeling for physical differences as so many have insisted, they are just asking if it hurts. Say ow 11x and you have fibromyalgia. The touch points were not even ever standardized.

Web MD Cleveland Clinic Mayo Clinic American College of rheumatology NHS interpretation of pain zones

In 2007 Lyrica was the first drug approved by the FDA for the treatment of Fibromyalgia. Commercials declared it to be a real disease and sufferers rejoiced and called their doctors. In clinical trials 33% improved with sugar pill compared to 53% with Lyrica.

Cymbalta was approved for fibro in '08 and Savella in '09. I need Doctors continue to prescribe a lot of other drugs offlabel like Gabapentin. Some patients are told that opiates do not work with fibro, others are given large doses. Someday I'll write about how all these drugs are harmful, but I got other hobbies and interests.

In 2008 a New York Times article quoted the man who wrote the book, or at least the diagnostic guidelines, on fibro recanting his mistakes. "Some of us in these days thought that we had actually identified a disease, which this is clearly not. To make people ill, to give them an illness, was the wrong thing."

Dr Wolfe faced humungous political pressure for this, and eventually recanted. In a later interview he said “In those with fibromyalgia, there is overwhelming polysymptomatic distress — severe pain and severe symptoms of all sorts. One doesn’t either have fibromyalgia or not have it. There is a gradual transition from the mild to the severe. The point at which we classify an individual as having fibromyalgia is arbitrary, but reasonable. Fibromyalgia, therefore, is a convenient shorthand, not a disease.”

It upset some that this disease which was quickly and rightfully gathering a stigma was mostly diagnosed in women. Wolfe found that women were more likely to respond with pain to the pressure signals, so it was decided to make new diagnostic standard for fibromyalgia that would include more men.

Current fibromyalgia Diagnosis

In 2010 Dr Wolfe lead other leading rheumatologists in rewriting the fibromyalgia guidelines to allow it to explain away other symptoms as well. The 2010 ACR Fibromyalgia Diagnostic guidelines (download pdf only) only muddied the waters. Here is the cliff notes version.

alt : what

At first blush it looks very scientific, but it's really not. Widespread Pain Index (WPI) is how many places a patient says they have had pain in the last week from a list of 19 vague descriptions like upper arm, and lower leg. Insides of elbows and knees, the only part of the tender points that was consistent everywhere I checked, are notably excluded. To find the Symptom Severity (SS) they simply ask how much insomnia, fatigue and non restorative sleep is effecting you; would you say no problem, slight problem, moderate or severe? The doctor then changes that to a symptom severity score between 0 and 3. The SS was based on the number of additional somatic symptoms that are reported. The doctor should decide if they have 0 no more symptoms, 1 a few, 2 a moderate number or 3 a great deal of other symptoms. Add the severity of the 3 symptoms so closely related with pain and the other symptoms to get an SS between 0-12. There is nothing scientific or subjective about any of this, it's based entirely on a quiz that is scored like a teen rag quiz.

The 2010 version of Wolfe's diagnostic guidelines doesn't dictate what somatic symptoms the doctor should consider, but suggests the following:

muscle pain, irritable bowel syndrome, fatigue/tiredness, thinking or remembering problem, muscle weakness, headache, pain/cramps in the abdomen, numbness/tingling, dizziness, insomnia, depression, constipation, pain in the upper abdomen, nausea, nervousness, chest pain, blurred vision, fever, diarrhea, dry mouth, itching, wheezing, Raynaud's phenomenon, hives/welts, ringing in ears, vomiting, heartburn, oral ulcers, loss of/change in taste, seizures, dry eyes, shortness of breath, loss of appetite, rash, sun sensitivity, hearing difficulties, easy bruising, hair loss, frequent urination, painful urination, and bladder spasms.

There's a list goin' around of 200 fibromyalgia symptoms. OMG!

It's dangerous and stupid to explain these symptoms away as fibromyalgia. If someone has hives, doesn't it mean they are allergic to something? I know over half of those are symptoms of kidney failure. If it burns when you pee, you might have an STD, or kidney failure. I'd hate to see people explain away seizures, fevers, loss in appetite, easy bruising.. other signs of an actual serious medical condition because of this silly shit!

The paper also does not suggest how many miscellaneous symptoms should be considered few, a moderate number or a great deal. Many doctors, being scientific minds, were not comfortable with this so they updated the guidelines in 2012. Instead of asking is your insomnia, non-restorative sleep and fatigue no problem, slight problem, moderate or severe the doctors are supposed to ask questions and decide for themselves. This was supposed to remove many doctor's objection that the fibro diagnosis was based entirely on what the patient says. They also set in stone the number of other unexplained symptoms the patient would need to mention to be few, a moderate number, a great deal.

The new diagnostic criteria stressed that primary care doctors can diagnose fibromyalgia and ignored the simple fact that many don't want to. Most would rather kick the can down the line and do a referral.

I find it curious that 75% of those who passed the touch point "test" also complained of so many other symptoms that I can't find attributed to fibromyalgia before 1990.

In 2013 Dr Wolfe did another interview where he publicized this blog for scientists to talk about fibromyalgia. He admits the disease seems to have a prominent psychological basis but refutes attempts to put it in the DSM with other mental problems.

"People who almost have fibromyalgia almost have it. So the idea that there are differences between people who have fibromyalgia and those who don’t have it is an idea which may not really be true."Wolfe, 2013

Dr Wolfe, the man who wrote the book on Fibromyalgia, says "One of the problems with fibromyalgia is that people may be identified on the basis of behavioral symptoms. People who are having more pain or being more deliberate in demonstrating to observers that they have pain, or having more complaints that seem a little bit more severe, tend to be identified more easily as having fibromyalgia. Whereas, people who have the same disorder but aren’t as demonstrative about it may be missed."

Recently there has been a push to have general practice instead of rhumies diagnose fibromyalgia. It is also no longer being considered a diagnsis of exclusion, which is even more dangerous. Actual medical conditions should be ruled out as much as possible before saying someone has fibromyalgia.

I haven't seen much concern that each of these new updates to the fibromyalgia guidelines excludes a lot of honest people who fit the previous standard. The changing of the questions all the time almost encourages malingering. Opinions vary on if this is a lifetime chronic disorder or a spectrum that everybody finds themselves on at some point.

I recently learned that there might be completely separate diagnostic standards for fibromyalgia. I'm going to be looking into these. I also recently stumbled upon the the 2013 alternative fibromyalgia diagnostic standards that appear to be a short quiz you can take at home. At some point I am going to make a chart that compares all of the different diagnostic criteria. Now all of a sudden headaches, abdominal cramps and depression are a big part of diagnosing fibromyalgia.

alt : YOUR-RESUME-NAME.pdf

The Fibromyalgia test is bogus

I heard the big news about the Fibromyalgia test in 2012. A thousand tests were sold in the first month at $744 each before the study that the test was based on was withdrawn. The authors failed to state the serious conflict of interest that they were going to use their findings to market this test and there were serious flaws in the design. When I first wrote this site, I thought the test is no longer available. I was shocked to find out the test was still being on the market. I was able to find a lot of articles announcing the new trials were being released but I couldn't find the new clinical trial or any commentary afterwords.

I contacted EpicGenetics, the company that is selling the test, on facebook and asked them about the new clinical trials. I asked them why the information on their website was from the withdrawn study and they updated part of their website right away, removing a claim from the withdrawn study that the test was 93% accurate. They showed me that they had posted the new trial on their facebook page last December, but one would have to go through over 50 sales posts on their facebook to find it. They posted a link to the second study on my facebook page and on theirs.

The new trials did not address most of the concerns the scientific and medical community had already raised about the first one. I posted a few of these questions, I don't remember which ones, on their facebook page. Like many who have contacted them on facebook with questions, the EpicGenetics people suggested I contact their doctors to discuss this. I think this might be the only place you can call and talk to a doctor for free! This must be much more expensive for them than it would be just to put some very basic information on their site. When I persisted that I would rather have this conversation on their facebook page they deleted the questions and promptly blocked me. In the next few days they made several edits to their website, even in middle of the night, before taking it down entirely for a page that just told people if they had questions to contact their salesdoctors. Later they put the page back up.

The only difference I can find in their website is they no longer state an accuracy of the test on their page. They used the numbers from the faulty withdrawn trials to peddle their test for years. Even by their flawed new study, were 30% false positives for RE and 29% for lupus, both conditions which are hard to diagnose and often mistaken for fibromyalgia. The new trials claim that it was 89% effective in fibromyalgia. The new version of the page does not state an accuracy but some articles wrongly state it at 99%.

The faq asks what else can effect the test results and fails to mention rheumatoid arthritis, lupus, depression, insomnia or even time of day; instead they warn they need your blood sample within 24 hours but they have that covered. The rest of the FAQ deals mostly with the process of getting blood sample drawn and to them. The FAQ also features if the test is FDA approved and shows a politicianesque answer that boils down to no.

They offer no information on their website on how the test is supposed to work except the link to the both the withdrawn and new studies. I don't see any limitations or disclosures mentioned. I don't see cytokines or what other conditions can cause them to fluctuate anywhere on the site, except buried in the withdrawn clinical trials in woefully inadequate section for doctors.

The ordering process starts by asking if you have the classic fibro symptoms and you can only proceed by clicking yes, you just stay on the page if you click no. Then you are asked if you want the test authorized by your doctor or one of theirs. The form you fill out to get one of their doctors to authorize the test asks nothing that would eliminate any one of the conditions easily mistaken for fibro in a clinical setting that they know could cause a false positive on their test. I'd really like to hear from someone who ordered this test and find out what disclosures and information were included with the results. I just might be crazy enough to order one myself.

I don't understand why the scientific community publicly critiqued the 2012 study but I cannot find a single article about the 2013 one obviously ignoring most of the reasons the earlier one was wrong. I decided to compile these reasons myself; these are just my opinions as a layperson but obvious questions I think people selling this test should have to answer.

The old study tested people who meet the ridiculously vague American College of Rheumatology diagnostic guidelines against healthy volunteers. To show that there was any difference between people with fibromyalgia and others with pain disorders or who were just depressed, they would need to use controls who were in pain or just depressed. Here are a few of the concerns brought forth about the first clinical trial that were not addressed in the new one.

-They only used one only used one method for measuring cykotines

-The second study failed to compare anyone with psychiatric conditions which are known to also depress anti-inflammatory cyokotines even just simple depression or insomnia. There is no evidence that this test differentiates between fibromyalgia and depression. Cytokine IL-6 is known to fluctuate based on just time of day, which does not seem to have been noted in the new study.

-The study states that the RA and SLE patients had medications that effect cykotines and might have effected the result.

-Someone very supportive of fibromyalgia commented here and said that she also has Lyme disease, which effects cytokine IL-6. She's not clear on if she was diagnosed at the time, but did the fibromyalgia patients only have fibro? Seems like it would mess up the results to have people with other diseases known to effect that they are looking for. Were these people screened Lupus or Rheumatoid arthritis to make sure they should not be in the other group?

-They stated their conflict of interest this time, but it still remains that the people selling the test also tested it. In related news, me and my husband and mom voted this the best website on the whole internet. Woot!

The wheels of justice turn slowly, but I am confident that in time this test will be taken off the market for being misleading or at least mislabeled as what it truly is; a test of cykotine levels. I would be happy to print a reaction to this on my webpage within 24 hours of receipt, I will notify them of this as soon as it is published on their facebook page. Still nothin', but their website and facebook page encourage interested parties to contact their doctors.

The fibro warriors do not seem interested in stopping these people from selling a questionably useful and very expensive test to people. I

Rampant misdiagnosis is not evidence of legitimacy

A lot of links on my page recently seem to be arguing that studies showing fibromyalgia patients who share physical characteristics with actual medical conditions somehow legitimizes fibromyalgia.

It's important to understand that I never said that everybody with fibromyalgia is faking it. I believe that a good portion are and that fibromyalgia attracts and encourages the most obnoxious fakers. Nobody wants to be involved in the study that finally figures fibro out and be the one person who is shown to not have it. I believe these people are smart enough to stay out of clinical trials and not included in these numbers. These studies only prove that the people who chose to be studied had fibro and were in pain, and only by showing they have another condition.

One article reviews a group of studies and concludes that many with fibromyalgia have Small Fiber Peripheral neuropathy, SFPN. neuropathy is generally described as sharp, stabbing or burning while fibromyalgia is not defined and can be any kind of pain. neuropathy is not reversible but you cannot slow the progression without knowing the actual cause which could be infections like hepatitis, metabolic problems like diabetes, vitamin deficiencies, exposure to toxins or often unknown. Even if the cause cannot be found people are better off knowing they have neuropathy than thinking they have fibromyalgia. They are at risk for the nerves involved in subconscious body regulation being effected it can even cause heat intolerance, bowel bladder or digestive problems and dangerous blood pressure changes. All the drugs FDA approved for treatment of fibromyalgia and even many of the off-labels like Gabapentin were first proven effective against neuropathy. In clinical trials 33% improved with sugar pill compared to 53% with Lyrica, this matches up well with an estimated 40% of fibro patients having some form of undiagnosed neuropathy.

Another train of thought is that fibromyalgia is actually misdiagnosed thyroid problems. Fibromyalgia - A Medical Mystery Solved makes a bold statement middle of the 4th paragraph.

That cause is too little thyroid hormone regulation of patients' bodies.

I was set up for some big news, but disappointed.

How do we know now that too little thyroid hormone regulation is the major cause of fibromyalgia? Because our two new studies provide the final pieces of the puzzle. With these pieces in place, the proof that too little thyroid hormone regulation is the main underlying cause of fibromyalgia becomes irrefutable, as I show in the technical document at http://www.fibromyalgiaresearch.org/solved/index.htm (NB This website is no longer available)
The page in question was actually cached by the wayback machine on 8/1/2011, and appears to have always been just a copy of this article with the part in italics removed.
Despite this tomfoolery, the article dances around a great point that the author is missing. He makes a really good argument for 40% of people in a few small fibromyalgia studies actually having previously undiagnosed thyroid problems. He explains how similar the symptoms are based on small studies of fibro patients that showed abnormal blood work and lower body temperatures.

Both hypo and Hyper-thyrod can cause neuropathy. Some sources mention Hashimoto's Thyroiditis as if it was almost unique to fibromyalgia when in fact it is the leading cause of hypothyroidism. When the immune system attacks the thyroid it's secretions can be synthetically replaced. It's not a perfect cure but it's better than just trying to cover up the pain. Lyrica can, however, be like a song of comfort when you inexplicably end up with a goiter, mental health issues and the double whammy of increased risk of both heart disease and high cholesterol.

The Fibromyalgia Network seems to stumble across the problem when responding to a controversial New York Times piece and it's observation that diagnosing the condition actually worsens suffering by causing patients to obsess over aches that other people simply tolerate.

We now know that the statements these doctors made are actually false. Data show that after being diagnosed with fibromyalgia, people feel better, and their health care utilization goes down, likely because they no longer have to keep searching for what is wrong with them.
...(and later)
Moreover, the existence of several classes of drugs that do provide substantial pain relief should make it clear that the patient has an underlying problem that is treatable."

I've also read that about 40 years ago doctors voted to change the name of a similarly disputed vague medical condition from adrenal fatigue to fibromyalgia, and adrenal problems being misdiagnosed as fibromyalgia. With fibro "we don't know" is easy to answer compared with hard questions like "why is my adrenal gland fatigued" and "why are my nerve sheaths deteriorating?"

Gluten insensitivity and toxin buildup were also presented in the video as possible causes of fibromyalgia. It's interesting how they are thought to cause inflammation in the gut that spreads throughout the body and are exacerbated by the original allergic reaction or toxins. They describe people who experienced great relief by changing their diets and detoxing. To me this is just another group of people who were misdiagnosed.

The question that all of these studies fail to answer is why these patients should not just be treated as anyone else with the conditions that the evidence points to. The only answer I've seen is because people with fibro show other symptoms not generally associated with the condition they actually have. The only examples given are muscle pain, which was not mentioned in any fibro diagnostic guidelines that I read, and depression, of which anyone in pain is prone to.

When changes already well described as occurring in people with chronic pain or even undisputed characteristics of other conditions masquerade as new discoveries about fibromyalgia, reasonable people are mislead into thinking there are physical differences between people with fibromyalgia and everyone else. Many of these made big splashes as purportedly solving the fibro mystery are upon further examination found to be changes already described as occurring with chronic pain. These only confuse people into thinking that some physical basis for fibromyalgia has been found when in fact there is none as there is never as many press releases when further study shows they are just describing another angle of the chronic pain elephant or even the undisputed physical characteristics of another condition. This is often why these studies are not replicated on a larger scale despite their promise of turning into a very lucrative fibromyalgia test or treatment. I have a separate section about the bogus fibromyalgia blood test which is based on cykotines which are known to fluctuate for healthy people due to depression or insomnia but especially in those with neuropathy, thyroid or adrenal problems.

If the actual underlying medical condition causing pain is unknown it is called primary fibromyalgia. This so-called primary fibromyalgia is claiming to be the cause of the pain itself and people diagnosed with it are cheated of the benefits of what medical science knows about their actual condition. There is some dispute if fibromyalgia is a diagnosis of exclusion or people with actual medical diagnoses which explain their pain. Despite their culture screaming it and many memes coming right out and saying it some people deny that fibromyalgia pain is ostensibly worse than others with the same condition. This is the actual definition of secondary fibromyalgia. Their pain being worse is alternately viewed as being both a cause of and a result of their fibromyalgia symptoms. The usually unspoken idea that the pain of fibro patients is somehow worse is not supported by any evidence whatsoever. All of the conditions I've seen described as secondary fibromyalgia cause chronic pain and I'm yet to hear a benefit to the reclassification.

In many instances, people who suffer from chronic pain are sensitive to stimuli that don't normally cause pain, such as a light touch to the hand or a subtle change in skin temperature. These conditions, referred to generally as forms of allodynia, include fibromyalgia and nerve damage that is caused by diseases such as diabetes, cancer and autoimmune disorders.

Some doctors say there should be several different subgroups within fibromyalgia depending on the underlying cause; neuopathic fibromyalgia, thyroid fibromyalgia, lupus fibromyalgia, etc. I don't see any difference in how these conditions are diagnosed and treated. The fibromyalgia diagnosis offers no benefit, it makes people think they are somehow sicker than others with this condition.

This is what makes fibromyalgia research so pointless. There is really no common link between everybody with fibromyalgia. Many of the groups will talk about what works wonders for a few of them, this is because of placebo or the people who it's working for all having the same underlying condition. It must be frustrating to hear from a lot of people who you trust that something works and then find it does not work for you. People find fellowship in these groups, but they also find a toxic culture of self pity and massive confusion from everybody not really having the same thing. These people would be better off in a group for their actual condition to find things that are much more likely to work for them.

Treat the patient and not the diagnosis. Nowhere does that fit as well as here because I also followed up by saying there could have 10 patients coming in here with fibromyalgia and they could all be slightly different to completely different as what's creating their unique set of symptoms. There are probably 500 different things that could be contributing to, now that was just a rhetorical exaggeration, but not by much! There are probably 80 things that can contribute you getting the "fibromyalgia syndrome" if you will. We still use the term here because people can communicate with it, everybody communicates with the term fibromyalgia but its a terrible term..

It is a terrible term. In the first few months of this page being active I've already corresponded with 2 people on my facebook page who have rejected the fibromyalgia diagnosis and insisted on finding the actual reason for their problems, one has already confirmed with a nerve study it was neuropathy and is looking for the reason.

Many people who have fibromyalgia and another pain causing condition say their fibro pain is different and they can tell them apart. Fibro pain can be any kind of pain whatsoever while many assume it is similar and agreed to be some of the worst pain people can experience. Everybody who says this is experiencing something different depending on their actual underlying medical condition.

For many people fibromyalgia is a reaction to stress. They may not be intentionally malingering but they are subconsciously looking for an excuse to avoid some of their responsibilites. Tragic things happen in the course of human events, and some people understandably have a physical reaction. Would it really be better to tell this woman she has fibromyalgia?

The biggest shock to me was just after the first month or two of seeing a bunch of fibromyalgia patients was and I didn't really make a connection at the time they were sexually abused they were physically abused and they were verbally abused or they went through some severe stress. Had one yesterday whose husband died then all of a sudden she had fibromyalgia and then that stress mechanism I think is maybe the most unappreciated aspect of all this. When I'm doing the consults with folks that come in here they kind of get it after I'm talkin' to them for a while..
At this point, the other doctor gets visibly uncomfortable. Did he just say that? Yeah, he pretty much said it's caused by stress who is a close cousin to "it's in your head." People with fibromyalgia don't like being told to see a psychiatrist so the doctors in the video have found a round about way to suggest something just similar enough to possibly help but different enough to not require they be licensed councilors. Go on..

..and after I start describing the sympathetic response to them and how that can effect their physiology and so but most of them in the beginning don't really get that that's part of what's created the problem and triggered and that's what's perpetuating that process most people can grasp all the other things you're gonna talk about, we're gonna talk about the gluten the irritable bowel but the stress is.. and once we.. once dr once dr gates started puttin' together that stress modulation program we saw huge differences in that patient. I can think back to some patients before that, if we would have had that program we would have gotten a better response

I called the office of the doctors who made that video and confirmed that this "stress modulation" they speak of is really just talk therapy and something about foot detox. I don't understand how telling a person who is in pain because of a tragic event like the loss of a spouse that they have medical problems is seen by some as nicer than acknowledging that they are facing a tragedy which is understandably upsetting them so much that it's manifesting physically.

Later in the video they mention Functional neurology which appears to be little more than another name chiropractic neurology. Following chiropracty's long tradition of oversimplifying most problems as being with the spine I don't understand how these treatments vary from the rest of chiropractic care. People tend to like to buy treatments especially for fibromyalgia, I'd like to know how they would treat someone with neuropathic "fibromyalgia" different than someone with simple neuropathy other than validating their crazy need to believe fibromyalgia is real.

It's well established that fibromyalgia patients are twice as likely to be survivors of childhood abuse. Others them consider a major trauma, like a car accident or surgery, to be the beginning of their symptoms. Some of these people like to hear that there is something physically wrong with them despite all medical evidence to the contrary. Others want a reason to think that their suffering is somehow above and beyond than others with their condition, the worst pain you can imagine. Intentional, conscious malingering is rare but the body will find ways to slow you down if you're overstressed.

A fibromyalgia diagnosis never helped anyone

There are only a few reasons that someone would be diagnosed with fibromyalgia.

-The person is misdiagnosed. There very well may be something that could be done, but they won't know and it won't happen if they accept this diagnosis. Instead they go down down down the rabbithole of fibro "research" chasing their tails.

-The person is a hypochondriac. All of the hypochondriac's worst fears are confirmed and every ache and pain is now a confirmation that they are, indeed very very sick. You just told 'em they have an incurable, progressive, chronic illness.

-The person has unrealistic expectations of feeling good all the time and are exaggerating everyday aches and pains. Maybe they had an accident, injury, surgery or illness that they may never fully recover from. Instead of telling them they are lucky to be alive, the doctor will call their complaints for their very understandable problems "fibro." When people are obese, don't get enough exercise or eat very poorly fibro means the obvious consequences of this are not their fault and they are discouraged from making healthy changes. -They have a medical problem like neuropathy or arthritis but feel that their symptoms are somehow worse. Some doctors say that fibro is a diagnosis of exclusion and others simply call this secondary fibromyalgia.

-The person is depressed, anxious or otherwise stressed so much it is causing physical pain without anything physically changing in their body. For most people, finding out that you have a chronic incurable disease is very bad news and will make all this worse. Most, but not all.

-They have Munchhausen Syndrome where they knowingly fake medical or psychological problems to bring attention to themselves. Others do it for disability payments, pillz, or time off work or other responsibilities. Give them a scary-sounding DX like fibromyalgia and they will NEVER EVER put that card back in their wallet. As a matter of fact, they'll buy a T-shirt. Ever notice fibrowarriors buy a lot of tshirts? They've written a fuckton of books too. People with like to talk about being sick. Their dramatics are more dramatic than those with actual life threatening conditions. Some have even expressed envy of those with real medical problems. These are the especially crazy ones who REALLY annoy the fuck out of me.

Can anyone think of any circumstances in which a fibro diagnosis would be a benefit to anyone? I honestly can't. Sure, it's nicer to bullshit people, but is it really good for them?

The stigma on fibromyalgia is well earned. People with fibromyalgia WHINE like nobody else. They like to complain that they are not being validated and discriminated against and bullied. I still have people on my facebook page crying to me about someone being called a cat lady two weeks ago. Often when you ask for details they have none, they just like to throw those buzzwords around and consider themselves perpetual victims. This video really touched me. I had so many questions for this woman, but she just deleted them.

What does she mean by limiting people based on how they look? Does she mean limiting their perception of how sick she is? Why does she want everyone to believe she is very sick? I can say from firsthand experience it's not fun to go about your days looking like you're very sick. She mentions discrimination. What does she mean? Is she disappointed that people do not treat her like she has an obvious medical condition? What specifically do they get that she wants? What does mean by legitimately sick, and what benefits does she perceive in being recognized as such? Does she think fibromyalgia is as serious as.. say.. cancer? I've had a lot of people note on my page that they'd rather have cancer because people do parades in pink tutus for cancer and it's curable, not realizing that it only goes into remission.

She doesn't need to be sick in order to deserve validation or respect, and being sick doesn't entitle her to more. To me there is something about the spoon theory that seems to suggest that healthy people do not as well have very limited amounts of time and energy, and that the spoons of those who choose to describe themselves of chronically ill are somehow more precious. Why do so many want others to validate their illness? How does this vary from garden variety pity? We all have imperfect bodies which age every day. This chronic illness movement has at times reached the point of minimizing the struggles of those who do not self-identify as sick, even and especially when they insist on doing so despite the lack of any medical evidence of such. We all have a story to tell, and it truly saddens me when people choose to make fibromyalgia such a central part of theirs.

I posted this on the creator's YouTube and she deleted most of my questions. She left one question up and replied simply:

People have insisted to me that they don't want extra rights, just the same rights as everyone else. If they aren't seeking extra rights there's no need to even bring it up or get their illness "validated." Those people sure do sell a lot of tee-shirts and make a lot of memes to show everyone how bad they got it. Seems they really like people to feel sorry for them. I guess at times we all feel that way but it surely isn't going to make them feel any better.

What good does awareness of any disease do? I have a serious illness myself, one that nobody disputes the validity or seriousness of, but I don't see any need for people to be "aware" of it. There are thousands of ailments and we could all get ourselves very depressed learning all about other people's medical conditions. Is this awareness so we will give people who have Fibromyalgia more slack when they don't fulfill their responsibilities? Are their accomplishments somehow more inspiring because they did it in spite of a chronic illness?

There are very few conditions that it does any good at all for the general public to be aware of. We should be aware of things like Autism and Tourtettes, because they impact the day-to-day interactions that we may have with strangers. It's also helpful to bring up awareness of the symptoms of some health problems so the general public knows how to keep themselves healthy. Everyone should know the signs of a stroke, women should know how to check for early signs of breast cancer, things like that. But just awareness for awareness' sake of something like Fibro?

Many people with fibro don't have even the most basic understanding of the syndrome. They think that there was something in their lab work or imaging that confirms this, they have no idea it was just a survey. It's time for REAL fibromyalgia awareness!

Most doctors don't want to diagnose this condition because it so vague and unscientific, support groups trade info on agreeable doctors and strategies for coaxing a doctor into agreement.

They've made a fucked up culture of Fibro Warriors, where they think they have the corner market on pain and suffering as a whole. They brag about their SS, WPI and tender point scores as if they were something more than the results of a quiz that no one knows if they were truthful during. The man who wrote the fibromyalgia diagnostic guidelines says that 40% of fibromyalgia patients meet the DSM-5 guidelines for a condition called physical symptom disorder."

Take this page down! I don't like it!

No, I will not. This is the truth, and I want to share it. There’s a whole group of crazy stalkers dedicated to keeping me from saying this. These crazy stalkers have not found me, but they have done extensive research on many others who think might be me.

I will not back down to this bullying. If someone shows me any part of this page is wrong, I will fix it. I'd be happy to publish a retraction from anyone quoted on this site from G--- J--- to Jenni to the doctors.

I will not change the name of my page
I'm amused by your tantrums and your rage
Not if you publish my docs or swat my house
Not for extortion, you say we you got a mouse
Not if you start a super-secret bully group
Or get drunk on your power and then fly the coop
Not if you ask nicely or tell your life story
Not when your threats get crazy and gory
Not if you threaten me with a pagan hex
Or karma, or your God, or forcible sex
Not out of fear when you threaten or extort
I'm also not afraid of being taken to court
You cannot sue me here or there
You cannot sue me anywhere!
You cannot sue me without money
Start a gofundme, that would be funny!
I left a note for your friends at the AFP
Promising that if they ever wanna talk to me
I'll fly right down there to see a wild kangaroo
But it's gotta be on their dime cuz here we got a zoo
Maybe offer them more pizza and ask them to reply
It's easier than extradition, give it a try!
I will not change my message or tone
Or rename my page so you'll leave me alone
That's called extortion, and I ain't afraid
Yer taking this too seriously you need to get laid
Fibro being fake is what this page is about
If this offends you then get the fuck out
If you want to debate, that's great have a seat
But this is the steakhouse, and we're having meat
I am not angry, I'm just getting annoyed
About how 2 posts removed has you overjoyed
And demanding I confirm this when I was asleep
Did you imagine I would fall to my knees and weep
But still you complain that the posts disappear
Aren't you the one who brought the censors here?
What was it you wrote that you think I deleted
You can't bully me give up you're defeated
If you want to debate this issue I'll still be here
But from day 1 with this I've been perfectly clear
That it's not wrong to think this and my conscience is clean
The truth may be saccharine but lying is mean
To tell hypochondriacs they have a disease
Getting worse every time they fart, itch or sneeze
Or to give this dx to the worst with Munchhausen
Make it seem mysterious like we gotta call House in
I don't wish you no harm I feel sorry for you
I hope you learned from this, I hope you grew
I'm not even asking you to go away
I'm hoping you chill out and have a nice day

Contact

There was a old facebook page with over 500 followers, but over 125 people didn't want this simple truth out so they harassed facebook until they took it down. Click here for the new page for this topic. Click the graphic below to get into the craigslist forum page I'm squatting on, there's no logon required and if you do create a handle it's with Craigslist.

Frequently Asked Questions

Are you a doctor? So you know better than my doctor?
No.

If you felt fibro pain you'd not be able to take it!
Fibro is any kind of pain; stabbing, throbbing, stinging, burning, dull, constant.. any kind of pain at all, that the doctors can find no physical reason for but persists for 3 months. What is diagnosed as fibro pain can happen anywhere in the body. It has been described here as bone, joint, muscle, tissue, organ, skin, nerve, tendon or headaches. Some have said for it to be fibro it has to be symmetrical or on one side or the whole body or it migrates. It can be constant or intermittent. The bare truth here is that fibromyalgia is ANY PAIN WHATSOEVER. In the vast majority of cases, if there is no physical problem, the process of elimination would suggest it is a mental one. Antidepressants and even placebo helping are solid evidence of this.

I'm in a whole lot of pain. Here's my life story.
I never anywhere on this site said you weren't in pain. Why are you telling me about your childhood? Are you admitting this is a mental problem?

Prove it's not real!
The laws of logic dictate you cannot prove anything is not real. It would be up to doctors to prove that there is any physical difference and they haven't.

I had all these tests!
They all came back normal for a fibro diangosis.

Here's a link to a study showing a difference between fibro patients and everybody else!
I have not seen a single study even suggesting, not proving, a physical basis for fibro have more than 200 people except the heavily flawed and conflicted interests of the supposed fibromyalgia test. If they were on to anything, they would do large scale tests. I have not seen a single study with more than 200 subjects that included healthy controls, those with verifiable pain conditions, and supposed fibro patients. Not one. These studies make the news and articles but medical politics make it unlikely that they are strongly refuted by other doctors publicly. If there was anything they would have found it by now; insurance companies would love to have a standard test instead of running tens of thousands of dollars in scans and appointments for this increasingly popular ailment. Government disability systems and private disability insurance companies would also be all over it. Thinking there could be a common cause or cure for all pain not otherwise diagnosed is ridiculous, especially considering the wide range of pain under this ridiculously over-sized tent. They come out with conflicting small scale studies all the time. Coffee/alcohol/wine etc are good for your heart/lifespan/whatever in moderate doses.

It's not just about pain!
Some mention fibro fog and insomnia as other symptoms required for a fibro DX. They are not. Web MD, Cleveland Clinic, http://www.mayoclinic.org/diseases-conditions/fibromyalgia/basics/tests- diagnosis/con-20019243 Mayo Clinic Mayo Clinic, UCLA, they all say all you need is 3 months of pain that cannot be explained otherwise. Even if all fibro patients did have these other symptoms, they could easily be explained by the supposed pain or the stress that could be causing the pain or encouraging someone to fake it. The other 200 symptoms are vague, caused by unrelated conditions, contradict each-other and most healthy people experience these symptoms at least once a week.

So are you saying depression is not real?
No, depression is a mental problem. Fibro claims to be a physical problem.

Who are you?
Why does that matter? Do you generally try to stalk and harass people to silence them?

web 
counter
People have seen this page
Since it's launch on March 13th, 2015.
There have been two updates.
Here is what the page looked like
3/13 to 3/15
3/15 to 3/27

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

So many strangers are getting nasty emails about this I thought I would take a minute to explain what happened. A few of them ended up contacting me on the page, many of them were confused by the first few emails and not sure what exactly they were accused of. To anyone who was attacked by the bully crew, I'm sorry. They think you're me, but don't worry, they have had literally a dozen suspects.

Here is the long and short of it; crazy people don't want me to say this so they're trying to find out who I am. Many of the people picked, I have no idea why. While they were doing this they crazy enough to think I am the bully, so I started getting some screen shots. Here is the craziest thing I've ever seen on the internet.

I noticed even as a child in the early 90's that people with fibromyalgia are especially whiny. The disease seemed very vague to me even then. When I was misdiagnosed with it repeatedly I read up on it and confirmed that it was absolute bullshit. I was told I was in denial about my fibromyalgia until I collapsed from kidney failure.

In 2012ish I had an especially bad experience with a person with fibromyalgia and spent 5 minutes making the page. It pointed out that there is no real science behind fibro, that it's just crazy easy to fake, and therefore attracts a lot of the most obnoxious and stupid fakers. I never said any specific person was faking, but admitted that I believe most of them are in my ramblings. I mean, really, medical science can find no problem? I later found out many of them had unfakable conditions, and the fibro means that their pan is worse than those with the same condition without fibro. Again, all without any concrete substantiation of their symptoms; you have fibro if you can find a doc who will give you the quiz and you complain a lot during it.

I never advertized it except on my own page to my friends, it was just there if someone wanted to see it. I got dozens of emails thru the years from frustrated husbands mostly who agreed but dared not like. It gathered viewers and I posted from time to time and when I had about 100 visitors it was suddenly discovered by the fibro warriors.

They posted links all over the place begging their friends to flag the page. It became very busy, and 3 friends volunteered to help me with it. The fibrowarriors think they have someone who is leaked who I am, but I have known these people forever and know they didn't betray me. They flooded it with all kinds of crap but there were a lot of good discussions that occurred too. There is nowhere else on the internet that an actual open discussion of fibro is taking place. There is really heavy censorship in all the fibro pages and rampant misinformation.

A bully club was formed to try to take the page down. They contacted anyone who was mad about the site that they themselves had spread the word about. The leader of this page had originally written a letter claiming that I was discriminating against people with fibro and doing hate speech. Again I was only saying that fibro is a fake diagnosis and not saying anything bad about any particular person or people with fibro in general. He never considered what discrimination is, obviously, because I was not denying anyone housing, education, employment or financial services.

There was a lot of good information and a lot of really crazy people putting on a hellova show. Unrequited love even blossomed.

They were the only people I had ever seen who could cry that they were being stalked.. and that their stalkers blocked them.

They would attack viciously and then complain if they were snapped back at. When they lost arguments, they would resort to this shit, or threatening emails, many of which I could recognize the same misspellings in.

They loved to provoke people, especially with attempted desalinization (come on, be a man and do what I want!) and then cry that they were bullies. One bully was especially rampant and got really upset that people were locking their profiles up before posting. She had previously demanded I retype the whole page for her, and when I did, she didn't answer. When she expressed frustration about people locking their profiles I suggested she instead talk about the page's topic and she felt bullied. She often did.

Who is the bully here?

I'm a helpless old woman, please don't hurt me, oh wait I'm gonna attack again!

The first person suspected of being the page author received dozens of nasty emails. Another person posted the list of 200 fibro symptoms and I shared it, so they thought it was her. She was stalked, harassed, bullied and thrown out of fibro support groups. Most of them are just competitions of dueling violins anyway so it was probably for the best but pretty cruel anyway. I watched as someone was thrown out for suggesting they apologize to her. The main reason she was thought to be guilty was because she did not answer the nasty emails fast enough to declare her innocence. They have also thought that I am the person who wrote a blog I shared on the page, he ended up taking the post down because of harassment all over his blog. They pondered if I was pretty much anyone who ever posted on the facebook page agreeing even a little, especially the first person who posted, and several random people who I have no idea who they are. They have talked about peoples spouses and kids and made it clear they got their eyes on any suspects. They called me various names in the page and even passed around a few physical addresses. All I could do is throw them out.

I would like to extend my genuine apologies to anyone stalked or harassed because of this page. I understand facebook is not too concerned about this kind of behavior or even a group that is orchestrating it, so there's not much I can do. Most pages do not allow flagging clubs, if content is bad people will flag on their own without reminders.

The only thing I hate more than random people being attacked because I dare speak my mind is stepping down to bullies. They only energized my efforts. They never found me, but through the page I got a literal hundred emails promising a bloody demise, lawsuits, jail, pagan hex, FBI, international law inquiry, Jesus' wrath, even forcible sex. I wrote to the mothers of the 20 year old who threatened to rape me; I hope she got that letter in her other folder.

These were not just random nasty emails, these people read back years on people's profiles to find the most effective insults possible. One woman thought to be me was mocked for admitting she had drunkenly cheated on her husband and posted about it on AA websites when she was new in her sobriety. They included this info in her letter and posted it all over my page. I deleted it and reported it, not against facebook rules. Nothing else I can do. There were about a dozen suspects, a few of which contacted me but none of which I knew before.

The first guy to run the bully club tripped on his own big head and announced that he had a 4 hour conference with the American Federal Bureau of Investigation and Australian Federal Police. Because of the fibro culture, no one called him on his stupidity. When I pointed out how silly all this was he called it victory when he told everyone to flag the posts and they were removed.

Previously he had insinuated that the FBI was on their way to get me, and when I couldn't help but make fun of him for this not materializing he demanded that no one in his group go to the group that they were trying to bring down. Anyone who did would be immediately kicked out of the bully group, he said. He didn't follow through with this but instead implored people to use throwaway fake facebook accounts instead. At the same time he was mocking me for keeping my identity secret.

A new leader was chosen who told them there was a exception in the first amendment for disabled people. Everybody believed her, or nobody had the grit to say something. When I posted about this it was also removed, I should have learned.

When I continued to post things from the now secret group, half of the members were purged. It went from 250 to 100ish. Yes, there is a group of 132 people out to get me for writing this page.

Sometimes they would get overly friendly, and when losing arguments they would often distract with long irrelevant stories mostly used to try to garner pity.

Right before the page was removed I implored the bullies to explain where the bullying was on my page. I don't see how anyone can not see that they are the bullies here. They found a conversation where I was not involved where someone was called a cat lady. This was the abomination for which they were seeking blood. They didn't want to admit they just don't like people knowing the truth about fibro. I was also accused of compiling info on people as they admitted they were doing this exact thing.. "to prevent bullying." Other than when curious if they are in a country with socialized medicine I haven't even pulled up these people's profiles.

Even calling someone silly was enough to get a post removed. It kept happening, and eventually the page was taken down. A few days later I started a new, similar page and two young ladies stopped by to brag they got my page taken down. Again, I was just stating that there is no basis to fibro and there are a lot of fakers. I think they realized they were the bullies when they deleted the posts.

Several hundred people see every post I make on the facebook page within 24 hours but people are understandably afraid to like and comment because of the bully brigade. I will continue to speak the truth on this and study and learn about this. I stated several times that there is no test for fibro, and it turns out there is, it's just bogus. Just as I was writing this a crazy woman came in and accused me of trying to hack accounts from this webpage. I asked her what I wanted to do with her email, I don't even want to read my own email, and she deleted it.

Things keep on mysteriously disappearing from the facebook page. People like to accuse me of deleting things, but I'm not. I think everybody flagging things has caused some things to disappear and authors are deleting others. One woman put up some videos and after I showed that they proved my point she took 'em down. Another posted some supposed underwhelming examples of me bullying people. I only posted one of them, and it wasn't that bad. I will post them here if they are posted again on the facebook page. There were 4 people adminning the site before and I didn't know one was gettin' snappy. I am responsible for everything posted on this handle and I would have talked to the other admin who is already off this page for unrelated reasons if I would have found out about this sooner.

I had to block a few people pondering about who I am, therefore encouraging the rabid mass to direct their stalking or anger towards that individual. Such stalking info is not useful to you unless you want to implicitly threaten these people or attack them personally. I threw out another person for flooding dozens of unrelated memes. I offered that both of them could come back to the page if they agreed to stop this behavior, but both declined. These people continue to post in the bouncy castle I set up for them and usually end up deleting their comments within a few days.

Fibrowarriors have even posted repeatedly about someone's wife and kids, as if to say I know what they look like keep fucking with me. The other reason is for what many fibrowarriors simply can't stop doing, completely off-topic personal attacks. I'm sure they'd love to find out little deets about me so they can choose the most stinging insults like they did against Amy L, or just dismiss me as crazy because of some unrelated difference in our politics or religion as with Amy S. When questioned about the complete lack of evidence supporting this fibro theory one woman said I needed Jesus and left. LOL.

Similarly when faced with damning evidence against The FM Test many start questioning my intentions, as if that changes the bare facts here. I wish I would have broken that info anonymously so fibro warriors would put an end to people getting ripped off by this. I guess some people would rather be ripped off for $744 by someone saying I believe teee hee than told the truth by someone who is not selling anything. This isn't about the truth, this is about protecting their special rights.

Some people just can't get enough of this page. They declined my offer to not use implied threats and stop talking about people's kids to be able to comment here, but they still post wherever they can and privately message people. Their disgusting attempts at intimidation are much better done in private anyway. This woman who was blocked for encouraging stalking continues to contact people who like or post the page.

The adventure continues, ironically enough more people are reading the truth now.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

The fibro warriors have banded against me to pull my own facebook and they're workin' on my new one. They filed hundreds of reports with Godaddy saying this page is full of viruses and child porn and untold more with Facebook. I wish they showed just some of that enthusiasm for correcting misinfo about fibro, which is rampant in their pages, especially when it is used to sell them things that are not proven effective or even harmful. They don't care though, as long as the person says fibro is real.

It doesn't matter if you're spreading information they know to be wrong or even using it to dupe people out of a couple paychecks, if you're saying fibro is real, it's okay. There is nothing resembling debate or discussion as misinformation snowballs by good ol' fashioned telephone. Anyone who is not too spineless to correct dangerous misinformation when they see it is quickly shown the door for making people uncomfortable. Some people's feelings are just soo easily hurt, and they are subconsciously begging for it to happen in the hopes they can have another reason to declare their victim and martyrhood.

Many people assume that doctors are regulated such that if they make blatantly false statements the FDA goes up there with sirens to put them in a prison where they will be used for medical testing in the future. I found that instead the FDA has almost 50 different voicemails for 50 states where you leave a message and someone calls you back. You cannot do this anonymously, so I will not do it. I see people all the time widely distributing these scams and someone has to speak up about it.

Guaifenesin Protocol Scam

Everybody feels better when they take a bunch of cough medicine!
The Guaifenesin Protocol is taking OTC cold medicine for the of your life. People are selling books, CDs, appointments and sometimes even products free of salicylates. This cosmetic ingredient is blamed for any failures. Also featured on the
Fibromyalgia Network.

It all noticed this heavily shared video on youtube that had some blatantly incorrect statements about fibromyalgia. I was shocked by the blatantly incorrect info throughout..

Dr St Amand told me of a unique and specific pattern of muscle spasms and swellings that he called "nodules" throughout our body...and the nodules have phosphate in them.
There is no evidence anywhere that these nodules exist in people with fibromyalgia who do not have a separate condition that causes them, like kidney failure. When they happen in people with kidney failure, but are then visible in scans. They have not been found in biopsies or even autopsies of people with fibro.

she also said.. our kidneys do not work well and phosphates build up in all our cells and causes all the problems of fibromyalgia and Guaifenesin makes the kidneys excrete phosphates 6x faster.
In their own clinical trials there was no difference in the blood or urine phosphorus levels of the participants. The people pushing this Guaifenesin Protocol later said this was because they had not yet discovered that salicylates could effect the results. Doctors not making name and fortune on this theory all agree that the amount of salicylates that it would take to skew the results even just a little is 4x more than the average person would use. I'd be really curious to know how they got this 6x figure that she repeats She said it again here. There is NO EVIDENCE that people with fibromyalgia sluggish kidneys. If they do, they probably should not be taking unnecessary medication and run not walk to the nearest nephrologist to try to slow their kidney failure and avoid dialysis.

She says repeatedly throughout that people get better on her protocol.

In clincial trials, guaifenesin performed worse than the sugar pill. Perhaps it's the caring atmosphere if this woman's office that makes people feel better, but they should not be taking unnecessary medication. Nobody in the clinical trials experienced the worsening of symptoms that Dr St Amand said they would. Not one.

She also mentions that her treatments don't just mask but reverse the symptoms with no side effects. I wonder why people are supposed to take it for the rest of their lives then?

This is simply NOT TRUE. According to Web MD, this mediation commonly causes drowsiness, incomplete or infrequent bowel movements, inducing of a relaxed easy state, and stomach cramps. Infrequently, it can cause problems mental problems, lung, kidney, liver, pancreas, circulatory systems and all kinds of neurological and mental problems.
Four different people in the video quickly found that everybody they knew, including children and even toddlers, had fibromyalgia and should start taking high doses of OTC cough medicine right away. I felt particularly sorry for this kid, whose eyes seem to be screaming I'm doing this for my mommy but I'm not sure it's true.

I remember having headaches all the time in school all the time and I didn't even know that I had less energy I just felt like it was normal and I got tired and ever since I've been told fibromyalgia does that and that I have fibromyalgia I'm just like I have really low energy right then, so..

Oookay. You're gonna start drugging kids unnecessarily? Who do you think you are, a psychologist!?! That's it, I'm asking some questions. First I posted on Dr Melissa Cogdon's wall. Since I she mentioned She ignored it. A few days later, she posted a study about love reducing the perception of pain. I responded asking if she had any similar evidence about her Guaifenesin Protocol. Because she mentioned prominently in the video that she was Dr. St Amand's best student, often right before a slew of incorrect info, I also contacted his current practice at the Fibromyalgia Treatment Center.

Melissa did not respond to my questions asking for proof of the nodules, the sluggish kidneys, the 6x faster or her product working at all or without side effects. Well after business hours she posted a study about love making pain a little easier. I said something like wow, a study! I'd like to see more of these, maybe about your products?? Not amused, she deleted both comments. The FTC responded by saying that they do not know of this woman and what she is saying.

When I posted on Melissa's page saying Dr St Amand's office hasn't heard of these things, she quickly deleted it and blocked me. Hmm.. her being is favorite understudy who did the cough syrup cure herself and he chose to take over for him was one of the major themes of her video, and came right before her um, creative parts.

When I persisted, Dr St Amand's office told me to go away and said they are not selling anything. REALLY? Free doctors? I thought those were only available by telephone at EpicGenetics! I checked their website and found out the appointments are not free and they are selling books and DVDs, but of course not the actual OTC cough medicine.

Eventually they put up this post declaring that I was "spamming" them and they were deleting the posts as fast as they could. Before I started contacting them they had all kinds of literal spam like vitamins all over, they sifted through this to get rid of my pesky questions. I had only made, at most, 5 posts on their page and all were reasonably friendly. Their fans all agreed that I am a terrible person and a bully. When asked for evidence of my bullying, they fall silent every time. The chorus told them how to block me, so I'm out.

If people wanna take Musinex every day, it's no skin off my nose. I just want them to be able to make an educated decision as easily as possible, and this woman embellishing medical info and possibly even her own associations and education does not help this. People need to ask her hard questions, not just forward her video.