|History||1990 Touch Points||Current Criteria||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.
There is no test for fibromyalgia.
A blood test was marketed but proved invalid because it measures cytokine, which fluctuate in healthy people but also in people with pain. Insurance companies would love to have one $744 blood test instead of the dozens of visits needed for a current fibromyalgia diagnosis but the test is like proving that people with cats have fur on their couch. You can pretty reliably find fur on the couch of people with cats, but they might also have a dog, or a sloth, or just be bad housekeepers. Other very small studies have shown a raise in something called substance P, already known to be related to cytokine. That is like finding that they also have a bowl of water on their floor. An article saying the test is 99% accurate is simply wrong.
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 fibromaylgia is fake and 25% saying all fibro patients are faking it.
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.
Some people say, I don't care what it's called, as long as I get a diagnsis. 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 vauge 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 consistancy to be dxd 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 dxing any pain as fibro.
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 "waundering 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."
By 1976 it was thoroughly disproven that there were any swelling in these patients so the name was changed to "fibromyalgia." At that point fibromyalgia meant muscle pain, there was no official diagnostic critieria for it.
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 Rhuemetology to write official diagnostic guidelines for fibromyiagia. 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.
|Mayo Clinic Version of tender points||Cleveland Clinic Version of tender points||Web MD Version of tender points|
In 2007 Lyrica was the first drug approved by the FDA for the treatment of Fibromyalgia. Commericals 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 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 intrests.
In 2008 a New York Times article quoted the man who wrote the book, or at least the diagnositc guidelines, on fibro recanting his mistakes. "Some of us in these days thought that we had actually indentified 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.
In 2010 Dr Wolfe lead other leading rhumetologists 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.
A patient satisfies diagnostic criteria for fibromyalgia if the following 3 conditions are met: Widespread pain index (WPI) =7 and symptom severity (SS) scale score =5 or WPI 3 - 6 and SS scale score =9.Symptoms have been present at a similar level for at least 3 months. The patient does not have a disorder that would otherwise explain the pain.
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, nonrestorative 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, 2013Dr 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."
If someone really is in pain, there are only a few reasons I could see that they would get a fibromyalgia diagnosis, but none of these are good.
-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." This goes against the actual definition of fibro, but some doctors do it. 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.
-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 Munchausen Sydrome 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 dx 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. Just to get the diagnosis you have to do a lot of whining after the doctor repeats that there is nothing really wrong with you.
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?
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? Those people sure do sell a lot of teeshirts 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.
Another common symptom of Fibromyalgia, which I think actually comes from the "fibro warrior" culture, is assuming that everyone else who does not claim to have it has boundless energy and therefore should do all their chores for them. The spoon theory explains that people with fibromyalgia have limited energy as if people without it don't.
To simply that, people with fibromyalgia whine. Alot. 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 and WPI scores as if they were something more than the results of a quiz that no one knows if they were truthful during. Many of them have declared that they would rather have cancer because then there would be an end to it, not even realizing that cancer is never cured but only goes into temporary remission.
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 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 supersecret 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
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.
Are you a doctor? So you know better than my doctor?
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 dxd 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 dx.
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. 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?