Fibromyalgia: Disease Or Marketing Ploy?

Drugmakers Spent Millions Marketing Pills, Some Experts Doubt Validity Of Illness

(AP)  Two drugmakers spent hundreds of millions of dollars last year to raise awareness of a murky illness, helping boost sales of pills recently approved as treatments and drowning out unresolved questions - including whether it's a real disease at all.

Key components of the industry-funded buzz over the pain-and-fatigue ailment fibromyalgia are grants - more than $6 million donated by drugmakers Eli Lilly and Pfizer in the first three quarters of 2008 - to nonprofit groups for medical conferences and educational campaigns, an Associated Press analysis found.

That's more than they gave for more accepted ailments such as diabetes and Alzheimer's. Among grants tied to specific diseases, fibromyalgia ranked third for each company, behind only cancer and AIDS for Pfizer and cancer and depression for Lilly.

Fibromyalgia draws skepticism for several reasons. The cause is unknown. There are no tests to confirm a diagnosis. Many patients also fit the criteria for chronic fatigue syndrome and other pain ailments.

Experts don't doubt the patients are in pain. They differ on what to call it and how to treat it.

Many doctors and patients say the drugmakers are educating the medical establishment about a misunderstood illness, much as they did with depression in the 1980s. Those with fibromyalgia have often had to fight perceptions that they are hypochondriacs, or even faking their pain.

But critics say the companies are hyping fibromyalgia along with their treatments, and that the grantmaking is a textbook example of how drugmakers unduly influence doctors and patients.

"I think the purpose of most pharmaceutical company efforts is to do a little disease-mongering and to have people use their drugs," said Dr. Frederick Wolfe, who was lead author of the guidelines defining fibromyalgia in 1990 but has since become one of its leading skeptics.

Whatever the motive, the push has paid off. Between the first quarter of 2007 and the fourth quarter of 2008, sales rose from $395 million to $702 million for Pfizer's Lyrica, and $442 million to $721 million for Lilly's Cymbalta.

Cymbalta, an antidepressant, won Food and Drug Administration approval as a treatment for fibromyalgia in June. Lyrica, originally approved for epileptic seizures, was approved for fibromyalgia a year earlier.

Drugmakers respond to skepticism by pointing out that fibromyalgia is recognized by medical societies, including the American College of Rheumatology.

"I think what we're seeing here is just the evolution of greater awareness about a condition that has generally been neglected or poorly managed," said Steve Romano, a Pfizer vice president who oversees its neuroscience division. "And it's mainly being facilitated by the fact the FDA has now approved effective compounds."

The FDA approved the drugs because they've been shown to reduce pain in fibromyalgia patients, though it's not clear how. Some patients say the drugs can help, but the side effects include nausea, weight gain and drowsiness.

Helen Arellanes of Los Angeles was diagnosed with fibromyalgia in September 2007 and later left her job to go on disability. She takes five medications for pain, including Lyrica and Cymbalta.

"I call it my fibromyalgia fog, because I'm so medicated I go through the day feeling like I'm not really there," Arellanes said. "But if for some reason I miss a dose of medication, I'm in so much pain."

A single mother of three, Arellanes sometimes struggles to afford all her medications. She said she is grateful that a local Pfizer sales representative occasionally gives her free samples of Lyrica "to carry me through the month."

The drugmakers' grant-making is dwarfed by advertisement spending. Eli Lilly spent roughly $128.4 million in the first three quarters of 2008 on ads to promote Cymbalta, according to TNS Media Intelligence. Pfizer Inc. spent more than $125 million advertising Lyrica.

But some say the grants' influence goes much further than dollar figures suggest. Such efforts steer attention to diseases, influencing patients and doctors and making diagnosis more frequent, they say.

"The underlying purpose here is really marketing, and they do that by sponsoring symposia and hiring physicians to give lectures and prepare materials," said Wolfe, who directs the National Data Bank for Rheumatic Diseases in Wichita, Kan.

Similar criticisms have dogged drugmakers' marketing of medicines for overactive bladder and restless legs syndrome.

Many of the grants go to educational programs for doctors that feature seminars on the latest treatments and discoveries.

Pfizer says it has no control over which experts are invited to the conferences it sponsors. Skeptics such as Wolfe are occasionally asked to attend.

The drug industry's grants also help fill out the budgets of nonprofit disease advocacy groups, which pay for educational programs and patient outreach and also fund some research.

"If we have a situation where we don't have that funding, medical education is going to come to a screeching halt, and it will impact the kind of care that patients will get," said Lynne Matallana, president of the National Fibromyalgia Association.

[learnFMnow]

Ok, now all those people out there who have thought that FM is not real or that they have a magic cure if it is real.... look at the most recent research. Facts... gray matter is now proven to be dissipating in the brains of FM patients. Also proven that FM patients have more than normal amounts of substandce P in the spinal fluid. Fact: they are finding an alteration in levels of dopamine in the brain which sounds alot like parkinson's disease. Fact... Brain scans have proven patients with FM have evidence in the brain of pain iterpretation without any outside stimulus.
Hmmmm... sounds alot like the old days when they finally began to prove that MS was real when alot of doubting idiots out there called MS patients hypochondriacs. The loss of gray matter, or grey matter...whichever spelling you choose, has alot to do with the congnitive symptoms we have with concentration and memory and processing of thoughts and stimuli.
Now, does anyone have a pill to regenerate the gray matter, fix the dopamine levels, lower the substance P levels, and fix the abnormalities in brain perfusion?
I am really finally getting over the doubt people have been having about FM patients. I was mad for a long time. But now the joke is on you. GOOGLE it or BING it,,,, whatever you want. It is now MEDICAL science proving the diesease exiats....
It is real. It is debilitating and it has changed many lives forever. The last count I had was about 15 million. It is a horrid curse that I live with everyday. I am not an idiot and I am not making it up. I have daily horrible pain and have had to learn to live with it for the most part. Pain is not the only symptom. It goes on and on. BING that one too.

[learnFMnow]

I am still rolling steam out of my body over this garbage that is being sent to the public.
I cannot possibly tell you how miserable this disease is. It really serves to be humane to have doctors who refuse to believe a patient because of their own closed minds. I have talked to probably over 1000 people with this in internet support groups over the last few years. Many suffer because of ignorant doctors such as Dr. Wolfe. They suffer. Any mention of fibromyalgia brings the doctor to automatically think they are a nut case or liar or even worse a drug seeker. I am certainly not a drug seeker because I never used a thing for pain except tylenol until this monster moved into my life. That was at the age of about 40 when I began to have pain that was not touched my tylenol or any over the counter med. I had sleepless nights, times of tears because of pain, stigma when presenting to an ER for ANY reason. I promise NO ONE would make this crap up and suffer this kind of stigma if they did not have it. And believe me, if you have it, YOU will know it. I
I AM FED UP with all the garbage out there. Our doctors are suppose to be our advocates in pain relief. I believe that many of these doctors need to work with machines and not people.
Someday the FM community will rise up somehow and protest all this negative doubting. Some of them would be in wheelchairs and not just for "show". It would be because that is the way they live everyday.
I do NOT enjoy missing most of my children's lives. I do NOT enjoy having to stay home because I am so exhausted and in so much pain I can hardly walk around the living room.
I am not lazy. I am not crazy. And neither are the millions diagnosed with this. If is freakin high time that some money was spent on this crap. We are tired of being sick and tired of being labeled as liars.

[learnFMnow]

Another comment. Lyrica is not the panacea and end all for fibromyalgia. Some cannot take it for the horrible side effects. I took Lyrica for quite some time however. I had no side effects and the illness seemed to improve at least 50% during the first couple of months. Then the effectiveness wore off even at the highest dose. I stopped it because I paid out of pocket for a very expensive drug that was no longer working.
I suspect most people believe the commercials that trivialize this disease and make it seem as if some "magic pill" has arrived to make us "all better for good". WRONG. And the typical patient with this illness advanced is nothing like the people on the t.v. who took their Lyrica and are "fixed". And yes the disease does progress for just about everyone of the hundreds I have spoken with. (unless of course you choose to believe they are lying. If so, then I cannot "fix" your closed mind and cold inhumane attitude).
I have talked to hundreds of others over the last year or so with fibro. I have found that a large majority of those patients also found that Lyrica lost effectivenss if it was even effective in the first place. For some it does not help a bit.
Pain is pain. Pain is not imagined. I do not believe anyone could will themselves into some state of pain with imagination. No one should wake up from a night of sleep feeling like they have not rested or slept in weeks. (I suppose that is just "laziness" to most of you, huh)? I use to know what it was to be tired and have a night of sleep that "fixed" it. No more is that the case.
But closed minded people will continue to label us all as anything but people with a real illness. But until the day I die I will speak and attempt to educate about this illness that robbed me of life as I knew it or dreamed of.
Debra RN TEXAS

[learnFMnow]

I cannot tell the person or person's responsible for this CBS report just how badly they have hurt the emotional side of millions right now with words. I am 45. I am a female. I am a registered nurse. I had never once even heard the word "fibromyalgia" until I became very ill with it about 6 years ago in a flare that forced me to realize something was wrong. I missed a month of work. I thought I had a fatal illness. I learned it was "fibromyalgia". I had been ill with this curse for years but the symptoms were so subtle until that flare 6 years ago that I ignored it. I never went on the internet and looked up some disease so I could "get sick". I never had a patient with the diagnosis and frankly had to research all the information after I found out what was wrong with me.
When will people EVER learn how life altering this disease is? I still work full time out of pure neccessity and suffer 95% of the time with unrelentless pain and exhaustion. I did OT have any secondary gains from this illness. I still have to work, I get no help from disability because I cannot quit my job long enough to file. I would have to be homeless with my two young children before I could pursue unemployment. I certainly have not gained sympathy (which by the way, I do not want). I have not gained anything but pain that worsens with every year, stiffness in the mornings so bad that I cannot hardly move for 2 hours, problems with coordination and balance, bowel and bladder issues, numbness and tingling that turns to pure burning torture in my hands at times. (controlled by neurontin NOW for the most part).
There is just no greater emotional pain than to have an illness that is so painful and forces you to miss your children's life events and robs you of the self you once were.
NO ONE would make this crap up. Believe me, fibromyalgia would not be something anyone would CLAIM to have if they were not ill with it because it brings nothing but stigma to add to the pain.
Fibromyalgia was around for years and years before Lyrica ever existed. Long before Cymbalta or any other medication that is not marketed for the disease. It use to be called "fibrocitis" and other terms such as "muscular rheumatism". The term was changed in the 1990's.
How many people have suffered this curse of an illness over the last hundred years and have been labeled with the terms such as "hypochondriac", "liar", "drug seeker", or "lazy"?
You have an opinion about this disease because you don't have it. I don't have an opinion, I live with the FACT every single day of my life.
Studies are now showing the differences on brain imaging of how fibromyalgia patients bodies are interpreting pain with no logical cause. The imagery is THERE. It shows a pain response to no cause of pain.
Now, don't believe it. Keep on hurting people who have lost businesses, lost careers, lost friends, and lost spouses and other family members because of the very real disease called "fibromyalgia".
The next time you have a headache (maybe even a migraine)...how about someone look at you and say "oh no you don't, I CANNOT see it". How would you feel. Now consider a chronic condition you live with everyday that alters how you live. Imagine how it feels to be called a liar.
Debra V. RN

[LSOBOL5]

Fredrick Wolfe, Director of the National Databank for Rheumatic Diseases and one of the nation's most prominent critics of fibromyalgia, poses for a photo, Jan. 8, 2009, at the organization's offices in Wichita, Kan.

Wednesday, March 25, 2009 PART V CONTINUED
Should I perish this very day, it would not be because of FM technically, but in reality it really would because I would never know the difference, and I would be gone, nobody would be the wiser, and the dead can't speak! If this could happen to me it could happen to others with FM too.

[LSOBOL5]

Fredrick Wolfe, Director of the National Databank for Rheumatic Diseases and one of the nation's most prominent critics of fibromyalgia, poses for a photo, Jan. 8, 2009, at the organization's offices in Wichita, Kan.

Wednesday, March 25, 2009 PART IV CONTINUED
Also, my primary care doctor attributes my 'falls and collapsing' out of the blue to my FM which is very strange, but perhaps my nervous system doesn't know how to keep my leg muscles from doing so. At age 65, my chances of injuring myself from such a collapse will widen; the not knowing when the body will give way is daunting and of deep concern to me.
FM and sleep apnea, my sleep doctor informed me that 48% of FM patients have this condition, and I am undergoing further evaluation. Sleep for FM patients varies but is usually not the best. My dreams are so vivid, when I awake from sleep, it seems like I've lived the dream and am waking up after already being awake all night. A FM patient recently shared this type of experience with an FM forum and I was touched because while trying to express this to my family and doctors, it is so unusual and strange that one would not believe it were it not to occur to them as well. Not just one night and one
dream, but time and again and again and again. The person who shared their data has opened up my eyes when they stated that FM patients feel like they have been living everything out in their dream, their bodies think that they lived the dream/s; therefore they wake up feeling exhausted to live their new day (only the FM patient's body like mine) feels so tired that it seems like they never go to sleep. It is understood that FM patients often never achieve the deepest level of sleep because they are in the light R.E.M. dream sleep instead.
People in the world not suffering from FM don't realize that the combination of pain makes these patients arise from sleep with many other discomforts and ailments as well, and almost never wake up with a 'refreshed' sense upon awakening each day. A typical and classical FM association is waking up with severe migraines and osteoarthritis and or osteoporosis stiffness and pain.
I've gone into detail to help people who may have FM understand that there may be more to their condition than they realized, and for non FM people to achieve more awareness about FM from someone who has it.
FM patients and their families all suffer. My inabilities and lack of strength from and associated with FM have confined me to inactivity to minimize my suffering. Because along with what I have already written, the fact that FM patients suffer from chronic 'flu-like' symptoms I experience on a consistent and chronic basis.
While anti-depressants are utilized in the treatment of FM patients (okay, what patient would not be depressed with FM symptoms spread out over months and years), many drug sensitive FM patients can't tolerate them and may mask what's going on. They may be life saving for the majority of FM patients, everyone is different.
FM patients, or anyone with a chronic condition, will be challenged, some more than others, with varying conditions and coping with their FM issues. Talking to others who care about FM is important, just like every other serious condition involving human health and welfare.
I began to learn that by talking with my neighbor and people here and there and others...that FM was here, was affecting many more people than I had ever dreamed of, and that it not only affects the FM individual, it affects their families in very dramatic and life altering ways. It affects every aspect of their life (just like any other very serious and potentially life-threatening illness).
I could keel over from a heart attack and not realize it because FM has messed up my entire system to that degree. Should I perish this very day, it would not be because of FM

[LSOBOL5]

Fredrick Wolfe, Director of the National Databank for Rheumatic Diseases and one of the nation's most prominent critics of fibromyalgia, poses for a photo, Jan. 8, 2009, at the organization's offices in Wichita, Kan.

Mar . 24 '09 Part III continued
I've gone into detail to help people who may have FM understand that there may be more to their condition than they realized, and for non FM people to achieve more awareness about FM from someone who has it.
FM patients and their families all suffer. My inabilities and lack of strength from and associated with FM have confined me to inactivity to minimize my suffering. Because along with what I have already written, the fact that FM patients suffer from chronic 'flu-like' symptoms I experience on a consistent and chronic basis.
While anti-depressants are utilized in the treatment of FM patients (okay, what patient would not be depressed with FM symptoms spread out over months and years), many drug sensitive FM patients can't tolerate them and may mask what's going on. They may be life saving for the majority of FM patients, everyone is different.
FM patients, or anyone with a chronic condition, will be challenged, some more than others, with varying conditions and coping with their FM issues. Talking to others who care about FM is important, just like every other serious condition involving human health and welfare.
I began to learn that by talking with my neighbor and people here and there and others...that FM was here, was affecting many more people than I had ever dreamed of, and that it not only affects the FM individual, it affects their families in very dramatic and life altering ways. It affects every aspect of their life (just like any other very serious and potentially life-threatening illness).
I could keel over from a heart attack and not realize it because FM has messed up my entire system to that degree. Should I perish this very day, it would not be because of FM technically, but in reality it really would because I would never know the difference, and I would be gone, nobody would be the wiser, and the dead can't speak! If this could happen to me it could happen to others with FM too.





serious that muscle relaxers barely put a dent to the pain suffered.
FM is real and people need only look around to see how many people know about it or of it because of a friend or family member who has suffered dreadfully from it.
FM patients need to be aware of the disorder/disease (I add disease because there is no ease in FM), be aware of packing on pounds, migraines, adhesions, I.B.S., chronic allergies, chronic fatigue, and the body operations regarding muscular malfunctions, arthritis, and more; so they can address FM.
As FM is a condition that in itself appears 'harmless' can actually be very life threatening from other conditions associated with it.
For example, with chest pain and shortness of breath, I am supposed to go to the ER, and after being hooked up to the ECG machine more than once, and reportedly in excellent cardiac health, less a 100 pulse rpm over numerous hours in one instance, I was 'fine' and sent home. Since I have chronic and classic symptoms that would normally alert me to a possible heart attack, how would I recognize a heart attack if it did come upon me, that is what scares me...that I would not know the difference from the 'norm' of FM in my body to a 'real' heart failure.

[LSOBOL5]

Fredrick Wolfe, Director of the National Databank for Rheumatic Diseases and one of the nation's most prominent critics of fibromyalgia, poses for a photo, Jan. 8, 2009, at the organization's offices in Wichita, Kan.
March 24 09 Part II
FM is like having a severely painful life threatening cancer that does not go away. Powerful pain killers don't do the job of quieting the pain well because the body is still doing exactly the same things that brought on the pain, the muscles still fail to operate as they should and the brain keeps the signals going and permitting muscles to squeeze the body as though a boa had about finished one off. Muscle relaxers can stave off the pain to a small degree, but FM is so serious that muscle relaxers barely put a dent to the pain suffered.
FM is real and people need only look around to see how many people know about it or of it because of a friend or family member who has suffered dreadfully from it.
FM patients need to be aware of the disorder/disease (I add disease because there is no ease in FM), be aware of packing on pounds, migraines, adhesions, I.B.S., chronic allergies, chronic fatigue, and the body operations regarding muscular malfunctions, arthritis, and more; so they can address FM.
As FM is a condition that in itself appears 'harmless' can actually be very life threatening from other conditions associated with it.
For example, with chest pain and shortness of breath, I am supposed to go to the ER, and after being hooked up to the ECG machine more than once, and reportedly in excellent cardiac health, less a 100 pulse rpm over numerous hours in one instance, I was 'fine' and sent home. Since I have chronic and classic symptoms that would normally alert me to a possible heart attack, how would I recognize a heart attack if it did come upon me, that is what scares me...that I would not know the difference from the 'norm' of FM in my body to a 'real' heart failure.
Also, my primary care doctor attributes my 'falls and collapsing' out of the blue to my FM which is very strange, but perhaps my nervous system doesn't know how to keep my leg muscles from doing so. At age 65, my chances of injuring myself from such a collapse will widen; the not knowing when the body will give way is daunting and of deep concern to me.
FM and sleep apnea, my sleep doctor informed me that 48% of FM patients have this condition, and I am undergoing further evaluation. Sleep for FM patients varies but is usually not the best. My dreams are so vivid, when I awake from sleep, it seems like I've lived the dream and am waking up after already being awake all night. A FM patient recently shared this type of experience with an FM forum and I was touched because while trying to express this to my family and doctors, it is so unusual and strange that one would not believe it were it not to occur to them as well. Not just one night and one
dream, but time and again and again and again. The person who shared their data has opened up my eyes when they stated that FM patients feel like they have been living everything out in their dream, their bodies think that they lived the dream/s; therefore they wake up feeling exhausted to live their new day (only the FM patient's body like mine) feels so tired that it seems like they never go to sleep. It is understood that FM patients often never achieve the deepest level of sleep because they are in the light R.E.M. dream sleep instead.
People in the world not suffering from FM don't realize that the combination of pain makes these patients arise from sleep with many other discomforts and ailments as well, and almost never wake up with a 'refreshed' sense upon awakening each day. A typical and classical FM association is waking up with severe migraines and osteoarthritis and or osteoporosis stiffness and pain.

[learnFMnow]

Dr. Wolfe is a closed minded judgemental little man who has decided that if he cannot "see it" it does not exist. I wish he could live ONE week in my body and he would know the truth. He needs to experience this. But now, Dr. Wolfe, look at the research as of June 2009. It is much different from what you thought, huh? Loss of grey matter, changes in dopamine levels, Evidence on medical scans of the brain interpreting pain when there is no outside stimulus? Increased substance P levels? Can you SEE it now?

[LSOBOL5]

Wednesday, March 25, 2009
Fredrick Wolfe, Director of the National Databank for Rheumatic Diseases and one of the nation's most prominent critics of fibromyalgia, poses for a photo, Jan. 8, 2009, at the organization's offices in Wichita, Kan.

Wednesday, March 25, 2009 Part I of III

Wednesday, March 25, 2009
I have secondary FM, and am trying to manage it with the most updated knowledge available on the topic, believing that knowledge is key to understanding FM. I have been encouraged to pursue the drug therapies to fight FM. I am drug intolerant and drug sensitive to many drugs and unable to take them.
FM pain made me pursue the drug Lyrica to aide me. I kept taking the drug and then doubled the dose from lower to higher, and my body seemed to shut down. I swelled up in my torso like a blow fish and felt like I could hardly move. I contacted my doctor and informed her I could not continue the higher dose. I went back to the original dose and seemed to benefit enough to stay on it for a total of approx. 8 months, then recognized zero benefits to myself and discontinued the Lyrica altogether.
I have had FM for numerous years, diagnosed with it in '08 by my rheumatologist. I fully recognize the controversial aspects surrounding FM and want to speak out for FM patients: These are my findings based on personal experience and talking to other FM patients as well as current data on the subject:
FM is real pain generally associated with a multitude of other disorders and conditions
FM is potentially very dangerous, and nearly took my life because while it may not outright kill a person, complications such as unknown or unsuspected weight gain associated with poor metabolism, can (heart disease, diabetes, etc.) to mention a few
FM is chronic and ever changing, though numerous FM patients have had remissions.
FM patients don't realize they have FM or a metabolic issue associated, and when they do it could be too late, CHF (congestive heart failure) may have already occurred or other further devastating disease
FM is real, is complex, can not seem to be seen with an MRI, Cat-Scan, X-ray...even though it seems impossible that these devises don't show the evidence of the pain
FM has often made me feel like I had already died, far more than once because of the pain accompanying flare-ups of FM. I was sure that the FM had destroyed every single organ in my torso during the onslaught of the succumbing pain I endured during a multi-month long flare-up. I was certain that the MRI would see the damage I had suffered for so long, yet all seemed perfect with the tests. FM makes muscles and nerves do things out of order. The nervous system seems to have a breakdown in its' ability to communicate from the brain to other areas of the body. The brain sends signals to muscular parts and organs (heart, liver, etc.) and tells these muscles to generally 'squeeze' these muscles and organs and to squeeze them to the point that it feels like a heart attack is inevitable and that death is imminent.
In the world around us FM could very well be on the verge of becoming an epidemic, and already is in my opinion. While the number of FM patients known is available, the European FM community realizes, probably like the U.S. does, that the number of FM patients going through the stringent process of obtaining a FM diagnoses may double the present numbers and steadily grow.
It was a friend of mine who recognized the FM symptoms and informed me about it.

[JoseLSuescun]

Fibromyalgia is being cured in the USA for a few years already. There was a 3 day program in one of the networks, but, hard to believe, went under the radar screen and into the sunset. Yes, there is already an inexpensive, magic pill. The immense majority of patients manage to carry a symptom free normal life.

Jose L. Suescun
[phone]
[e-mail]

[learnFMnow]

OK.. fix the grey matter now, fix the dopamine levels, turn off the brain's pain signals, fix the brain perfusion. Only someone living under a rock would believe this trash. It is an "inexpensive pill" but if you find enough idiots to buy into your garbage then you might get rich.

[jeanna4m]

As someone who has suffered for over 10 years with non stop pain in every part of her body I really get steamed over inept news coverage like this. Now I agree that drug companies have only their bottom line in sight I think it is wrong to assume that Fibromyalgia is not real. I take only three medication a day, One for sleep, one for Thyroid condition, and one for depression. I have worked at many different jobs since I came down with the symptoms, but am now unable to hold a job. It has gotten to the point that I only have 2 -3 "good" hours a day. When I say good that means that the pain is some what bearable. I have been thru trigger point injections, spinal blocks, different meds to the point that I could hardly function to try to find relief. No one in their right minds will have most of these treatments unless they are desperate. So all I can say is unless you have spent a day,or even an hour in my body, do not tell me that Fibromyalgia is not real. I pray you never have to truly experience it.

[harbinger09]

Agreed -- direct to consumer marketing SHOULD be banned. It''''s useless.

Posted by sdgfnp at 08:33 AM : Feb 10, 2009


Not only useless--it is dangerous.

[harbinger09]

If your flares are only in your wrist you don''''t have fibromyalgia. If you had it you would know the difference. Sounds like a marketing sentence Jan.

Posted by SmellARuse at 06:22 PM : Feb 09, 2009


If the flare ups are only in the wrist they can indeed by fibromyalgia. Fibro refers to muscle or fluid around joints or joints and myalgia is a catch all word for pain.

There is no elitism with this disease. If we do not know what causes it nor anyway to quantify it, we certainly don''t need a self righteous poster deciding who has enough pain to be "in the club: and who does not. ANY undiagnosed pain in muscle or joints can be labeled rheumatism or a myalgia. If inflammation can be quantified or not--that is not the point--if symptoms of arthiritis or other joint disease is not evident--it will be determined to be a myalgia. In time, it may spread over other areas or remain local--but neither you or I or the other poster are arbiters of who has the disease and who does not--if you have more areas than your wrist--more is the pity---but it does NOT mean that Jan does not have the disease. In the midst of all of the suffering, no sufferer needs the elitist bs coming from others. Get a clue.

[harbinger09]

Fibromyalgia is a catch phrase for unknown muscle and joint pain of moderate to severe intensity.


We should remember that before a machine was invented to examine the pleura and bronchioles in the lungs, asthma was considered all in the mind.


Before doctors were able to note the misfiring of neurons in the brain, epilepsy was considered a nurturing disorder...


The point is, there are probably very few fake illnesses, more so than there are simply a lack of equipment or medical devices yet invented to diagnose or explain many conditions.

I have had severe pain in my legs for years, complete with severe bruising, occasional ulcerations and swelling. Numerous MRIs. IN the end, the doctors could not help me and told me I had fibromyalgia. I changed my eating habits, got more exercise, limited my caffiene and soft drink consumption and recognized the fallability and real limited knowledge of doctors. As for whatever is wrong with my legs--what does not kill ya, will make you stronger. I learn to cope, and minimize pain killers too--that is an endless cycle, if you start.

[annefibrofix]

Fibromylagia is not a mystery any more; there is just a lot of greed keeping the truth out of the public view.

An all free web site tells how to test, diagnose and successfully relieve all symptoms of Fibromyalgia.

Supplies for testing are available locally at very low cost. Simple and easy to do yourself.

Use a special combination of common over the counter meds combined with tricks and tips. Live pain free without pain pills, think clearly, have strength,
recover energy, and sleep well. It''s almost like a miracle.

There are 4 Versions of Fibromyalgia.

All result in a disruption of all the clear fluid throughout the body. This fluid is the end product of blood, and it is what feeds, rinses and lubricates every cell. It is too thick to flow efficiently, and also to reach all the "intricate" parts of the body.

All free web site www.FibroFix.com tells 40+ Discoveries, how-to info and more. You can print off anything you like to keep handy.

There is nothing for sale, help is confidential, and the site owner will pay for phone calls in the U.S.

[lghivizzani]

I have had fibro for over 4 years and I think that anyone who thinks that it doesn''t exsist needs to see me when I''m in a frare. I can''t walk and can barely lift my head off the pillow. If I don''t have fibro than what the hell do I have.

[maba7]

Fibromyalgia may or may not be real. Something is causing a lot of people to have physical pain and disability.
I''m with the ones who say take the drug commercials off of TV. The pharmaceutical companies seem to be spending more on advertising than on R&D. No wonder prescription prices are sky-high.

[SDD1632]

I don''t care for the pharmaceutical companies, but I do care about the patients who are being diagnosed with fibromyalgia. I can tell you that fibromyalgia is a very real condition. There are physicians who have the condition and who have successfully treated their own disease without drugs. If fibromyalgia wasn''t real, then these physicians need to go back to medical school, but articles such as this one aren''t helping the victims of this illness!

[learnFMnow]

A pharmaceutical company did not give me FM. I had it long before Lyrica was thought of. They have nothing to do with me living a life of pain and hell.

[breezenva]

http://www.consumerhealth.org/articles/display.cfm?ID=20000830164825

I''m going to post the link again. The first time it was posted it ''magically'' got cut (so when copied and pasted it did not paste the whole link).

Should it do this again, go to ConsumerHealth.org and look up "Chemtrails".

[sdgfnp]

As a prescriber, I can see both arguments here. A side that is convinced that BigPharma is out to make billions (and they do), and the patients who would otherwise live a life in pain and suffering.

Call it what you will, but I can certainly attest that a diagnosis of Fibromyalgia is NOT as common as the author would assert, nor is it a diagnosis used quickly without ruling out more common ailments. FM is a nebulous catch-all when nothing else raises a red flag, and then (ONLY THEN), do we label it as such.

FM patients probably constitute less than 1% of my practice of thousands. Of those, less than 25% are on either Lyrica, Cymbalta, or both. These meds are not always tolerated, and often DO have some side effects that are more than some can tolerate. However, the ones that DO respond well, and quite a decrease in their pain, and an INCREASE in their functionality. I believe this also will decrease the amount of patients who would otherwise have to go on disability and need state/governmental ability in the long run -- that''s a good thing, right?

Until we find a global answer to this dilemma, why not just leave it alone and let those who suffer be the deciders and not the pharmaphobic conspirators who have only anecdotal judgments in areas they know nothing about?

Agreed -- direct to consumer marketing SHOULD be banned. It''s useless.