Disease Mongering? The Selling Of Fibromyalgia
33 CommentsBy Ed Silverman // January 14th, 2008 // 7:50 am
Is fibromyalgia an example of disease mongering? A new TV ad campaign for Pfizer’s Lyrica, the first med approved to treat the pain condition, argues the affliction is real. But some docs are questioning whether fibromyalgia even exists, The New York Times writes.
For patient advocacy groups and doctors who specialize in fibromyalgia, the Lyrica approval is a milestone. They say they hope Lyrica and two other drugs that may be approved this year will legitimize fibromyalgia, just as Prozac brought depression into the mainstream.
“What’s going to happen with fibromyalgia is going to be the exact thing that happened to depression with Prozac,†Dan Clauw, a professor of medicine at the University of Michigan, who has consulted with Pfizer and two other drugmakers hoping to market meds originally developed as antidepressants, tells the paper. “These are legitimate problems that need treatments.†He believes patients are stigmatized as chronic complainers.
But other docs — including the one who wrote the 1990 paper that defined fibromyalgia but who has since changed his mind — say the disease doesn’t exist and that Lyrica and the other drugs will be taken by millions of people who do not need them.
Fred Wolfe, the director of the National Databank for Rheumatic Diseases and the lead author of the 1990 paper that first defined the diagnostic guidelines for fibromyalgia, says he has become cynical and discouraged about the diagnosis. He now considers the condition a physical response to stress, depression, and economic and social anxiety.
“Some of us in those days thought that we had actually identified a disease, which this clearly is not,†Wolfe tells the Times. “To make people ill, to give them an illness, was the wrong thing.â€
Fibromyalgia primarily affects middle-aged women and is characterized by chronic, widespread pain of unknown origin. Many of its sufferers are afflicted by other similarly nebulous conditions, like irritable bowel syndrome. Because fibromyalgia patients typically do not respond to conventional painkillers like aspirin, drug makers are focusing on medicines like Lyrica that affect the brain and the perception of pain, the Times writes.
Docs who don’t consider fibromyalgia a medically recognizable illness and who say that diagnosing the condition actually worsens suffering by causing patients to obsess over aches that other people simply tolerate. Further, they warn that Lyrica’s side effects, which include severe weight gain, dizziness and edema, are very real, even if fibromyalgia is not.
Despite the controversy, the American College of Rheumatology, the FDA and insurers recognize fibromyalgia as a diagnosable disease. And drug companies are aggressively pursuing fibromyalgia treatments, seeing the potential for a major new market. Lilly and Forest Labs, meanwhile, have asked the FDA for an okay to market drugs for fibromyalgia. Approval for both is likely later this year, analysts say.
Worldwide sales of Lyrica, which is also used to treat diabetic nerve pain and seizures and which received FDA approval in June for fibromyalgia, reached $1.8 billion in 2007, up 50 percent from 2006. Analysts predict sales will rise an additional 30 percent this year, helped by consumer advertising.
Mike L
Some doctors believe that anything you can’t observe in an x-ray, and MRI, a bacterial culture, or a blood test isn’t real. There is more in Heaven and Earth than what fits in your narrow philosophy. I’m sure you’re doing an incredible service to fibromyalgia patients by demeaning them and their condition.
Mike L
Note: Above comment is directed at the doctor (Wolfe) quoted in the NY Times article.
Atlex
It is interesting to note that as far back as 2000, Jane Brody from the NY Times was writing stories “legitimizing” fibromyalgia. The NY Times was “disease mongering” far in advance of drugs companies.
Former Chronic Fatiguer
I am a former “chronic fatigue patient.” For me, the issue was sometimes severe pain, migrating, and of unclear etiolgy. The bigger issue was the “fatigue,” which is actually a misnomer. The feeling is more like an unceasing dizziness - or being “doped” - without every fully waking. Most of the labs I had done showed nothing abnormal, but some did - including some immune function indicators with were then viewed as markers.
I was never incapacitated in the sense of not being able to do my job. I was often “out of it” in terms of feeling connected with life. I was not depressed - as is true of many such patients - I took great pleasure in things that always gave me pleasure, including relationships. It was just that it was all experienced through a kind of fog.
The fog lifted after three years. I’m not sure why. Nothing outwardly changed in my life. I did push myself to exercise aerobically for an hour every day, regardless of how I felt (not so easy). It made an enormous difference to me when a doc in a major university’s Infectious Disease clinic told me it was a “real thing” - even if they didn’t know precisely what it was, or how to treat it. But that also, in itsslf, provided no cure.
It’s an N of one, but ny strongest hunch is that some number of people who carry this dx do, indeed, suffer from an illness that is yet undefined in etiology. No doubt, for many others it is, indeed, masked depression or something else.
That said, I also believe it is unlikely that Lyrica will turn out to be “the answer” for most of either group, and will turn out to be more of the problem for many. Lyrica is essentially a dressed-up neurontin, and was intended to be deployed for a range of uses once neurontin went off patent.
Bob Freeman
Of course, it’s disease-mongering. That’s what pharma does with GERD, Restless Leg Syndrome (a “real” medical condition as the DTC ads note. It has to be serious because it has initials), overactive bladder, dry eye,etc.
Find or create an advocacy group, fill their coffers and you have a movement and a disease.
Pain Sufferer
All,
If you have suffered the mysterious pain that anyone with this elusive disease has suffered you would want it to have a name and a treatment. It is always easy for those that have not suffered to argue labels and names. The only reality is that these people have real pain. There is something causing it. If pharmaceutical companies have found something that was once a treatment for something else, that now works for this type of pain — good for them and thank you. Mysterious pain is a nuisance and quickly diminishes quality of life — not to mention it leaves sufferers thinking they have something very wrong with them - i.e. cancer, other more serious ailments? All of which ruin a person’s life and lead to chronic depression and anxiety. Final thoughts — If a drug solves the problem or at least improves it, who cares what we call the condition? Why overcomplicate pain improvement? If patients think the side effects are minimal compared to their pain improvement — why should anyone else care? It is their pain not ours and their own individual side effects to deal with. Everyone that ingests a drug does not have the same side effects, some are insignificant others are more dangerous.
Quit being so judgmental about pharmaceutical companies on every little issue, everyone is right sometimes……
Nathan
Bob,
While I’ve disagreed with you on many topics, I’ve actually respected your opinions due to your excellent opinion article and your credentials. But your anti-pharma bent has gone way too far here. To characterize drug development on indications such as Fibromyalgia, “GERD, Restless Leg Syndrome, overactive bladder, and dry eye” as “drug-mongering” is just irresponsible and, frankly, disrespectful of the many people afflicted with those conditions. Would you group E.D. and obesity in there too? What about depression and anxiety?
Drug companies develop drugs for which there is a demand. Most normal people do not seek drugs simply for the heck of it. They seek drugs because they feel that there is something wrong. If these drugs were not effective, they would not have been approved. For something as complicated and speculative as fibromyalgia, I’m sure that a placebo control group was part of the phase-III study.
There are many diseases out there that await to be discovered and characterized. If you had been told 50 years ago about cholesterol lowering agents and high blood pressure medication, you probably would have characterized those type of agents as “drug-mongering” as well. Controversy about a disease doesn’t mean the disease isn’t real. If people (and insurance companies) think that the drugs are useless, then they wouldn’t be purchased — regardless of how much money a company spends on advertising.
How much money did Pfizer sink into advertising Exubera? It failed because there wasn’t a market for the drug. If Fibromyalgia doesn’t exist, then Lycira is doomed for failure. Let’s wait and see what the market has to say about it.
Bob Freeman
Nathan, I have gone over the edge on DTC and acknowledge it. I acknowledge the seriousness of RLS, GERD and other conditions, but frankly they’re not that common. If you look at the criteria for diagnosising GERD, for example, it is a serious condition but not heart burn. Most people, I contend, who diagnosis themselves with RLS ignored there mother when they were 5 years old and were told to sit still.
All medical advice starts with recommendations for lifestyle changes but Americans are either too lazy, too busy or otherwise unwilling to make changes. And, physicians, some of which like to keep long-term patients in the practice, are quick to prescribe.
I have always recongized the social value of marketing. Unfortunately, it’s been lost in the companies’ desire to squeeze as much as they can out of their diseases.
The straw that broke the camel’s back for me are the ads for RLS and, more importantly, bi-polar disorder.
Bob Freeman
Opps, I meant squeeze drugs not diseases.
Bob Freeman
double oops, their, not there mothers.
Eric
I read the New York Times article with a sort of sinking feeling. I don’t suffer from fibromyalgia, but I went through the whole rigamorole of doctors and laypeople questioning my pain condition. Fortunately, my condition was diagnosed using electrophysiological equipment, so after the a series of tests revealed that I had very severe axonal polyneuropathy, it was no longer possible for anyone with a basic knowledge of physics and physiology to question my condition and pain.
In the case of fibromyalgia, I suspect that scientists will figure out the disease’s etiology in another 5-10 years. Then everyone will feel bad for questioning their spouse/friend/children’s pain.
Incidently, one drug helped me regain some of my former lifestyle (which was at one time quite active and including daily jogging). The name of that drug? Lyrica. In addition to fibromyalgia, Lyrica is also FDA approved for certain seizure disorders and neuropathy. And with the help of Lyrica and a compassionate doctor, I was able to return to work after a 4 month absence.
I just wonder if the writer responsible for this slanted article in the New York Times realizes how much his opinions will affect thousands of people suffering from chronic, incapacitating, and yes, *real* pain.
Former Chronic Fatiguer
Yes, I think we have to differentiate:
(1) The strong possibility that fibriomyalgia is as “real” a condition for some number of pts as, say, genuine GERD, peptic ulcer, etc.
(2) That there are also a number of what we call functional disorders that may be part of that syndrome or independent, and mainly psychogenic (e.g., masked depression).
(3) If a med profoundly helps, and does not have an undue downside for a particular pt (which is always a difficult call, especially for a relatively new drug like Lyrica - and notwithstanding how much we know about its brother, Neurontin), sure, it should be tried.
(4) It is predictable that - whatever fibro is or isn’t - Lyrica will be overhyped, oversold, and overprescribed.
None of these assertions contradict the others.
FloraDora
Statins cause acid relux, helicobactor pylori ulcer, gall bladder disease and pancreatitis. GERD.
Stains also cause peripheral neuropathy–particularly in the lower legs and feet, myopathy and myositis in skeletal muscle. The incidence is much higher in athletic persons.
FloraDora
Statins cause acid relux, helicobactor pylori ulcer, gall bladder disease and pancreatitis. GERD.
Statins also cause peripheral neuropathy–particularly in the lower legs and feet, myopathy and myositis in skeletal muscle. The incidence is much higher in athletic persons.
Janet Hahn
After three years of being denied my disability it finally went through when I was diagnoised with Fibromyalgia. The only thing different in my medical records was the Fibro. I find it hard to believe that the Federal Goverment would reconize a condition that does not exist.
SUE A
I WAS 37 YEARS OLD WHEN I HURT MY BACK ON THE JOB IN 1990 AND WAS DIAGNOSED WITH FIBRO. WHAT IN THE H— IS THAT. I WAS ANGRY, HURTING,THAT I HAD SEEN MANY DOCTORS FOR ACUTE STRAIN AND PAIN AND THEY COULDN’T FIND ANYTHING. YOU DON’T HURT LIKE THAT WITHOUT SOMETHING BEING WRONG.I WAS HAPPY ACTIVE ONE DAY AND THE NEXT COULD NOT DO ANYTHING. NOW INSTEAD DANCING ON THE FLOOR IT’S DANCING IN THE CHAIR AND HOPE I DON’T TRIGGER SOMETHING IN MY BODY TO MAKE ME HURT MORE.YES MANY THINGS ARE HAPPENING TO ME, MY BOWELS,LEGS, FEET, BRAIN AND GOING CRAZY AT TIMES. I AM A LUCKY WOMAN TO BE ABLE TO WORK, HOW I DON’T KNOW, I PUSH MYSELF EVERYDAY, AND A GOOD BOSS THAT UNDERSTANDS.
tammy
I DO have fibro. People say,, ohhhhhhhhhh she looks FINE.!! Come spend one day feeling the pain I do. Then we will talk. People who have NEVER had this should not COMMENT on it, becuase they dont know what they are talking about!!!
I am sure the IDIOT who says fibro is not real, how the hell does he know!! ???
Ask any patient who has it.
I invite you to go look at fibro forums and boards!!
READ!! We are hurting. DO you understand I DO NOT WANT TO HURT!!!! WHO DOES??
Eric
FloraDora,
Lyrica is not a statin drug, if that’s what you were suggesting.
ol cranky
Having spent some time in a sleep lab set up at my former institution, I can tell you that restless leg syndrome is a real condition that negatively impacts sleep. I’m not an expert in the condition and haven’t been involved in the clinical trials so I don’t know if pharma companies haven’t expanded the population the same way they did with reflux (my guess is they did in order to sell more product but that doesn’t mean a disorder isn’t a real condition).
As for fibromyalgia, there’s been a lot of controversy over whether it is a real disorder, a broadly defined disorder used as a catch-all for other visceral/referred pain conditions, or just some sort of psychosomatic problem. The debate and diffuse differential has made it an indication that most companies weren’t even willing to design programs around. Visceral (referred) pain is even more difficult to address than other pain conditions but that doesn’t mean that the pain experienced by these patients isn’t real.
cevans
Forgive the length.
If those of you that think this is made up, I encourage you to really, really go back into the research even before the article written in 1990 or 1993. They have long associated this type of pain disorder (I hesitate to say disorder as it indicates somehow the person is broken)with trauma both emotional and physical. You will find that many who are diag. have some sort of past trauma whether it be a car wreck, a severe surgery etc. in some folks this almost rewrites the nueorpathways (some but not always) that percieve pain and how best to deal with it. Also, they have found (they meaning the those Ruem and Neuro, md’s that care enough to take the time to learn it instead of writing articles to fight it)that many Fibro patients produce too much of a chemical that sends pain signals. Lyrica may not be the miracle we hope. I am a Fibro patient. I hold degrees from well respecfted universities, I am 37 years old but from the time I was 15 I suffered greatly with Endometriosis (there again, I implore you to read your research, especially with regard to Fibro and Endo. My Endo fight ended with a hysterectomy at age 27 with no children. About three years later I began getting the same pain I had with endo only all over my body. Here is the connection to Trauma. Endo is Trauma, big time. After a couple of years of being treated like a drug addict, My GP, gave me two different types of antidepressives and finally the Nuerontin. I am not depressed, nor do I have the fatigue most report. Mine is solely widespread pain, like flu pain. But the drugs are horrid. I went from 117lbs to 142 in about 1.5 months. Unlike most of the reports, Rx painkillers work for me in low doses. These Dr’s and insurance co’s go around shouting addicition addiction with regard to painkillers. But, if antidepressives are not addictive then why do they make such a big deal out of suddenly stopping when you take them and they do make you sleepy, Some folks may want that feeling. Anything is addictive if abused.
Just goes to show that we are all different. On top of everything else, I now struggle with my weight. So before you accept expensive tv ads as gospel please read read read. And do not let anyone tell you, you are crazy, or that you are faking. I listened to that about Endo for nearly 4yrs until my 7th GYN happen to be a really great and creative Dr decided to do a lapscope and found it. Back then 1980’s Endo was also considered a made up condition by whiny women.
I really do hope they find a cure or a treatment for Fibro. it is very real.
Keep reading and always know as much as you can when you see a Dr or take a “new drug”. I have even found research that supports Provigil (related to Adderall) that shows amazing results for pain control. My Dr refuses to even try it for me.
God Bless and Good Luck
Bob Freeman
Ol Cranky, I recognize that RLS is a valid diagnosis. The epidimiology data suggests a prevalence of somewhere between 1-3% in the general population. I’m sure the condition’s incidence and prevalence rates will increase dramatically.
Re fibro, if the disease has been defined to the FDA’s satisfaction and an indication for a drug has been given, I have no problems with that.
The pandor’s box (I hate the term slippery slope) is that people will utilize physicians’ time seeking a drug for a condition they believe they have. Regardless of the extra cost of drug utilization, an incremental physician’s office visit cost is also incurred.
Laura C
As a fibromylagia suffer who improved greatly AFTER diagnosis and receiving appropriate treatment, I’m disheartened by the doctor’s comment that patients are made worse by diagnosis. I can’t imagine any reputable health care professional discouraging patients from seeking diagnosis and receiving treatment. Shame on you.
I was a very young woman when my symptoms first began — only in my mid-twenties. I was depressed but it is difficult to say whether my depression was the cause of or the result of 8 years of unrelenting pain. I sought treatment with many different physicians in many specialties: internists, rheumatologists, neurologists and psychiatrists. Many made me feel like it was all in my head — accept the psychiatrist.
And yes, like many other fibromyalgia patients, in addition to wide spread chronic pain, I also had IBS, GERD and migraine headaches. It it interesting to note that once my fibromyalgia treatment was initiatied that my other 3 issues disappeared too.
From time to time, I start to believe the news stories that fibromyalgia is not a real disorder and that I am needlessly consuming prescription medication — so I stop taking the pills. It does not take long before I realize the error of my ways and the pain returns. After the last time, I vowed not to use myself as a guinea pig and to stay with the treatment that works.
With treatment, I still frequently have pain but it is manageable and I am able to do most any physical activity I chose to pursue.
I don’t take Lyrica and since I feel my symptoms are well managed on my current regime, I have no plans to switch.
earthbound misfit
shame on you Mr. Berenson AND the New York Times. (people wonder why newspaper sales are at an all time low.. boy, talk about spin… o’reilly has nothing on you guys!) my grandmother suffered with this ‘nebulous’ syndrome, as did my mother and now myself. my husband and son, thankfully understand that even though fms/cfs, etc, can NOT be seen this does NOT mean these conditions don’t exist, or that they are not completely debilitating to some of us. believe me, i tried and tried to work and go about my life normally,(for years and years) working to disregard the constant nagging reminders/symptoms that would not release its strangle hold on me!
please, lets try to put this into its proper context; approximately 60 years ago doctors were SURE that multiple sclerosis was “hyserical paralysis”. believe it or not, there are things out there that science and medical research have not discovered yet. — i know, hard to believe, right?
if your readers are anything like the ‘reporter’ who penned this article; you would have us all believe that by simply putting a name to a cluster of (DOCUMENTED and DOCUMENTABLE, fyi) symptoms and putting a medication out there–even with potential horrible side effects, that people who are hypochondriacs with overactive imaginations and nothing better to do, will flock to see scheming doctors and demand this medication… to what end?
i can not even conceive of what i would go through in order to not feel like i feel every day. you underestimate your audience, as well as do a disservice to people everywhere who are decent, upright hardworking taxpayers…who happen to have a syndrome that others would not dare in a million years to ask for.
earthbound misfit
oops. hysterical
FloraDora
No, that’s not what I was suggesting. I was suggesting the constellation of symptoms the poster listed is common to a drug class prescribed to 58 million people worldwide. Look first to a drug you may be taking.
NoneYa
How interesting that Alex Berenson is once again having his feet held to the fire for failing to report accurate and fair information in his zealous quest at selling the NYTimes newspaper.
While searching for information about the illustrious Mr. Berenson, I found that in February of 2007, a Federal district court Judge named Weinstein, at the conclusion of an Eli Lilly trial called Berenson “reprehensible” for his part in what appears to be conspiracy surrounding stolen misleading and biased documents.
It was noted that because the information Mr. Berenson received had been cherry-picked the incomplete data release would construe inaccurate conclusions about a marketed drug and the Eli Lilly Company in general.
It appears that once again Mr. Berenson has failed in his duty as a reporter by creating news instead of properly investigating and fully reporting upon topic.
Mr. Egilman, who was named in the Zyprexa suit referenced above is quoted in a September 7, 2007, Reuters article about the case, noting that he made an apology voluntarily and recognized that the elected leaked documents did not represent complete data on drug nor company.
So what about Mr. Berenson’s apology for his misleading article on FM? Will one be forthcoming? Apparently not. Here are the results of my NYT search:
“Alex Berenson” + Apology” returned 0 results.
However, when I reviewed the NYT coverage of the Zyprexa lawsuit I see that the Times attorney was busy. I quote from their article on February 14, 2007:
Mr. Freeman said: “For the reasons set forth in our letter responding to Judge Weinstein’s invitation, we declined to testify voluntarily about our newsgathering methods. Unfortunately, that resulted in an opinion which vastly overstates Alex’s role in the release of the documents. We continue to believe that the articles we published were newsworthy and accurate, and we stand by them.”
So what does that mean for sufferers of this debilitating illness who have been categorized as whiners in Mr. Berenson’s latest article on Lyrica? Bupkis!
Evidently hawking newspapers is more important than the validity of what is printed.
I believe we expected better of the NYTimes and suggest that Mr. Berenson have his articles relegated to the opinion page if they continue to be printed at all.
Susan
This is not an imaginery illness. There are definite abnormalities in the spinal cord (Substance P) and the brain. It has been accepted by medical authorities and much research is being done. I’m sure if this were primarily a male dominated disease, it wouldn’t be summarily dismissed.
Bella
Fibromyalgia IS disease mongering–and it benefits Big Pharma, lazy doctors who lack imagination and the health insurance industry–the one who suffers from this so-called “fibromyagia” is THE PATIENT!It benefits big pharma BECAUSE THEY ARE MAKING MILLIONS! The health insurance industry makes out because they have a name to give pain so they don’t have to spend more to find out WHAT’S REALLY GOING ON! In most cases what’s REALLY GOING ON is underdiagnosed hypothyriodism, low growth hormone, low estrogen, progesterone and metabolic problems–these are ENDOCRINE problems. Also, some that are given this BS “fibromyalgia” label have untreated lyme disease, but most it’s endocrine. Do you call slapping a label of “fibromyalgia” on patients and stuffing them with pain meds and crap like LYRICA help them in the end? NO IT’S DOESN’T. When a person feels sick and they’re in pain, those reasons are often unique to that patient–what causes one person’s agony, is different for someone else. Why don’t doctors GET BACK TO DOCTORING?
Broda Barnes, MD knew what causes this so-called pain syndrome before the advent of the sometimes useles TSH test.
People need to find out what’s REALLY going on. If Lyme disease is suspected, one needs to be evaluted for such a condition.
To read more about metabolic/hormone issues that cause pain, google Dr. Broda Barnes, Dr. Lawrence Sotkin and Thierry Hertoghe. Dr. Hertoghe has helped many with pain who were deemed as having “fibromyalgia” when really it WAS THEIR HORMONES! Lack of hormones cause pain and immune dysfunction–and yes, changes in the central nervous system. I guess these so-called “fibromyalgia” big pharma doc experts NEED TO GET A CLUE!
Having stated my position, I want to extend my sympathy to all those suffering in pain but I want you to think–where has a FMS diagnosis done for you? Did it give you recognition that your pain is real? That is all fine and dandy but where is the relief without knowing/treating the bottom line. I was diagnosed with this dangerous label whilst Lyme and Bartonella invaded my brain and central nervous system and my hormones were messed up. I have no tender points or trigger points but since this FMS crap is passed out like candy, I was given this label until I found out what’s really going on in Oct 07. The problem is, 4 years later, I have Lyme arthritis and I am half bald with dry skin before turning 30! Hopefully, my hormones being treated now and antibiotics 4 years later will cure me and not cause permanent damage to my nervous system.
If you think what happens to me rarely happens, think again. Fibromyalgia is not only a dead end non-diagnosis diagnosis which keeps patients from finding out their cause for pain (everyone is different), it’s also dangerous!Patients, don’t buy into this. damand from your doctors to pinpoint and treat your cause of pain–most of the times it’s hormones!
ol cranky
Bella:
Having worked on compounds for visceral pain (i.e., primarily referred pain) I have to respectfully disagree with you about fibromylagia. People assuming the disorder is psychiatric in nature (due to history of sexual abuse) or due to hormones should take a look at some of Ursual Wesselman’s work (I may be spelling her name wrong, but she’s done some interesting work at Hopkins). Most companies avoid trying to navigate treatments for referred/visceral pain and fibromyalgia is one diagnosis that is usually pushed aside in discussion of development of these compounds as it is way to difficult to deal with. This isn’t a case of GERD (which is real) easily being expanded to include regular old heartburn (or ADHD being used an excuse to keep children medicated), this is a case of an orphan indication that isn’t a blockbuster maker.
Bella
FIBROMYALGIA IS NOT A REAL DIAGNOSIS.
PEOPLE IN PAIN THAT ARE DIAGNOSED WITH THIS “NON-DIAGNOSIS” DIAGNOSIS REALLY HAVE EITHER INFECTION/AND OR METABOLIC/HORMONE CAUSES.
FIBROMYALGIA IS NOT A DISEASE IN AND OF ITSELF. IT’S SIMPLY A WAY TO CLASSIFY PATIENTS, GIVE THEM A LABEL AND MOVE THEM THROUGH THE SYSTEM AND TELL THEM THERE IS NO “CURE” AND GIVE THEN PAIN MEDS AND ANTI-DEPRESSANTS.IF IT WERE NOT SO SAD, IT WOULD BE LAUGHABLE. LOOK AT ALL THE “A-HOLE OPINIONS” AS THE CAUSE OF THIS WASTEBASKET JUNKYARD DIAGNOSIS AND THE GET EDUCATED–I MEAN REALLY EDUCATED ABOUT HORMONES AND THEIR FUNCTION WITHIN OUR ANATOMY.
DOCTORS MAKE THE ERROR OF DIAGNOSING HORMONES BASED ON A STATISTICAL AVERAGE, NORMAL RANGE, NOT WHAT IS GOING ON IN THE CELLS IN INDIVIDUALS BODIES SO WHEN THE DOCTOR SAYS YOU’RE HORMONES ARE “NORMAL” BASED ON BLOOD RANGES AND NOT SYMPTOMS, THEREIN LIES THE PROBLEM.
READ DR. THIERRY HERTOGHE’S “THE HORMONE SOLUTION”
READ BRODA BARNES, MD “HYPOTHYROIDISM: THE UNSUSPECTED ILLNESS”
SHAME ON BIG PHARMA AND THE MEDICAL COMMUNITY FOR “FIBROMYALGIZING” PATIENTS INSTEAD OF LOOKING FOR HORMONE/NUTRITION ISSUES, ETC.SHAME ON YOU!!!! SHAME ON YOU AGAIN BIG PHARMA FOR PROMOTING LYRICA!
BEFORE FOLKS DUMP ON THE NY TIMES ,I MUST SAY THAT THEY HAVE A POINT,ALBEIT HALF A POINT–FOR THEY ARE CORRECT ABOUT BIG PHARMA AS DISEASE MONGERING ENTITY, BUT THEY ALSO LACK THE COMMEN SENSE THAT IS ALSO LACKING IN THE “FIBROMYALGIZERS” IN THAT PAIN IN WOMEN IS REAL–AND HORMONAL! BUT PLASTERING A LABEL OF A NON DISEASE ENTITY ON A PATIENT DOES NOTHING TO BENEFIT PATIENTS.AS WE CAN SEE BY THE POSTER ABOVE, SHE HAS HAD PAIN SINCE HER TWENTIES AND PAIN MEDS HAVE BECOME A WAY OF LIFE BECAUSE NO DOCTOR BOTHER TO REALLY HELP HER. VERY SAD.
FIBROMYALGIA IS A PHONY DISEASE BUT THOSE DIAGNOSED, LIKE THE POSTER ABOVE ARE SUFFERING WITH HORMONE DYREGULATION AND OTHER THINGS,AND THESE “THINGS” ARE NOT BEING TREATED BUT MASKED WITH DRUGS. WHEN IT COMES TO CHRONIC NON INJURY PAIN, THE CAUSES ARE DIFFERENT, SOMETIMES IT’S ONLY THE THYROID, SOMETIMES MORE HORMONES, INFECTIONS,ETC ARE THE CULPRIT.THE BOTTOM LINE IS GET HORMONE HELP.ANY DOCTOR WHO TELLS YOU THAT YOU HAVE FIBROMYALGIA, GETS OUT THE RX PAD TO WRITE AN RX FOR DRUGS, YOU KNOW YOU’RE IN THE WRONG OFFICE. USE DRUGS ONLY UNTIL YOU GET HORMONE HELP.
SHAME ON DOCTORS WHO FAIL TO RECOGNIZE/TREAT HORMONE DEFICIENCIES.
Bella
SO CRANKY,
NICE TRY–refered pain–DUH!!CAUSE ANYONE???????
SPOKEN LIKE A TRUE “FIBROMITE.”
GOOD LUCK GETTING TO THE ROOT CAUSE OF YOUR PAIN.
IF YOU FAIL TO UNDERSTAND THE FUNCTION AND FACTS ABOUT HORMONES THAT POINT OF FACT THEY GOVERN EVERY CELL IN YOUR BODY, REGULATE SLEEP, PAIN, MITOCHONDRIAL FUNCTION AND ALL THE MOST FUNDAMENTAL FUNCTIONS OF THE HUMAN ANATOMY, YOU ARE MISSING OUT.I AM NOT IMPRESSED BY JOHNS HOPKINS (WITH REDGARD TO THIS ISSUE) AS THE DEPARTMENT YOU RAVE ABOUT DIAGNOSED MY FRIEND WITH CFS WHO TURNED OUT TO TEST POSITIVE BABESIA AND LYME DISEASE. THE TREATMENT PROTOCOL GIVEN TO MY FRIEND DIAGNOSED AT HOPKINS WITH (WHO IS MALE) WAS CBT AND TO TAKE B-12. A LOT OF GOOD THAT DID TO FIGHT LYME DISEASE AND IT’S CO-INFECTIONS!
HOPKINS DOES NOT IMPRESS ME ON SUCH ISSUES (OTHER ISSUES DEALING WITH CANCER, THE WILMER EYE INSTITUTE–I HAVE GREAT REGARD FOR THEM).
BTW, IT’S NOT ABOUT AGREEING WITH ME, BUT HORMONE SPECIALIST WHO KNOW HOW THE BODY WORKS AND HOW HORMONES GOVERN NERVERS, MUSCLES, BONE, ETC.
SOME OF YOU ARE JUST DIE HARD FIBROMYALGIA LOVERS…………ENJOY YOUR FIBROMYALGIA AND KEEP PROMOTING IT– AND THEN HAVE PEOPLE FOLLOW YOU INTO THE DITCH OF DESPAIR INSTEAD OF HORMONE/HEALTH LIGHT.
WATCH HOW MANY DO NOT GET THE REAL HELP THEY NEED BECAUSE OF THIS LYRICA CASH COW AND LISTENING TO WELL MEANING BUT MISGUIDED FOLKS AS YOURSELF.
I WISH I HAD 5 DOLLORS FOR EVERY PATIENT MY GYNECOLOGIST TREATED FOR “FIBROMYALGIA” BY BALANCING HORMONES AND CORRECTING NUTRITIONAL DEFICIENCIES BECAUSE I’D BE LIVING IT UP IN HAWAII RIGHT NOW INSTEAD OF HAVING THIS CONVERSATION WHICH IS FAST BECOMING A REAL SNOOZE FEST…….
Terri
Bella, hate to disagree with you since it sounds like you have really done some homework but I have no doubt that fibromyalgia is a real illness with real symptoms that can drive real people real crazy.
I was diagnosed with fibromyalgia in 1988. Think about how long ago that was? There were no treatments. None. Most doctors had never heard of it and the ones who had heard of it called it another one of those womens “emotional illnesses”. If one was lucky and not allergic, you might get a few Tylenol 3’s but with warnings designed to make you as afraid of that bottle as a big ole hairy spider.
Through trial and error, I discovered that ibuprofen 800 mg (4X a day) and an electric blanket (on high) are the only things that have ever given me relief during a bad attack. I even tried booze a couple of times but discovered that made it worse for some reason. Narcotics work great for the all over pain but unfortunately I am allergic. Aspirin and Tylenol didn’t do a thing.
I have had all tests you are talking about in your various posts. For over twenty years, I have been a fibromyalgia guinea pig. My tests [including hormones within a statistical range and within the ranges that are individual to me] are all normal. Hundreds of tests!! - Normal. Normal. Normal. And believe me, because I am one of the oldest fibromyalgia sufferers that the medical community has been following for so long, I can assure you I have had more tests than you could dream up in a lifetime.
And now as I approach menopause, with all its glorious symptoms, I find no change in the fibromyalgia. And my hormones are all over the map now. Fibromyalgia symptoms have not changed. They are as they were when I was 30.
Nothing I tried, changed, discarded or added ever worked - my diet, vitamins, hormones (natural and man made), mineral supplements, no red meat, no meat at all, vegetarian, vegan, chicken and fish only, grains-fruits-vegetables, no hormone injected meat or eggs, no pesticides, add vitamins, remove iron (I am allergic), no exposure to any kind of chemicals, no exposure to over-the-counter medicines, no prescription medicines, add prescription medicines, my list goes on and on. You name it, I have tried it. No change ever in the fibromyalgia. In twenty years, the only treament I ever used that worked was the ibuprofen - electric blanket treatment. And even that failed sometimes. And now due to menopausal sleeping problems, I have added klonopin once in a while at night.
I am very educated about hormones, stress, functional disorders, autoimmune diseases, primary immune deficiencies, Substance P, radiculopathy, nerve, nerve roots and pinched nerves, the limbic system and the cortex, etc., etc. I am also very educated about labs, lab tests and pharmaceutical companies. I grew up with a very well respected, nationally known microbiologist.
I’ve had twenty years to educate myself. I could write my own book about fibromyalgia and I think you would be amazed. My body knows that fibromyalgia is real and I don’t believe it has anything to do with hormones or nutritional deficiencies or anything along those lines. Because I have already been down those roads. I believe that it is either a genetic defect activated by something in the environment, an unknown autoimmune disease or an unknown virus. And I have definitely not gone down a “ditch of despair”. I always had a good support system, a bottle of Irish Whiskey and food on hand to bribe over the support if I needed it and I make a mean lasagne.
But I can hear from the tone of your posts, that your mind is made up so I wish you and those who travel that route the best. I haven’t tried the Lyrica and probably won’t - just my own decision. I wish well to those who use it and sincerely hope it works for them. Whatever works hon, whatever works.
I remember the days when we were told that our menstruation cramps were all in our heads and handed a couple of aspirin. If we complained or cried, we were just being melodramatic or looking for attention. When I was young, cramps were considered a functional disorder like fibromyalgia, IBS and interstitial cystitis are today. Look how wrong they were and how much pain we were in.
To all those who battle the pain of fibromyalgia, may you find moments of peace throughout each day.
Terri
Lilly
Fibro is a syndrome, a series of symptoms. It is not a disease. It is very real but it is also probably of extremely varied sources relative to the patient.
There is some significant validity to the endocrine issues and their impact on fibro symptoms. Referred pain can also be a contributor and I think both are heavily ignored because they are extremely difficult and time consuming to figure out.
Slapping on a fibro diagnosis and putting someone on the drug de jour is much easier and cost effective for doctors than figuring out what is the root cause.
Something else that seems to be making things worse is the side effects of many medications. Side effects cause a symptom that is assumed to be part of another illness so the heap another prescription drug on the pile, then another. The patient ends up being no better off physically and much worse off financially.
The real trouble is that Lyrica is being practically forced on patients who present with fibro type symptoms. Lyrica’s risks are also heavily downplayed and many prescribers don’t even know about them.