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Monday, January 28, 2008

Chronic Monday: Another update on the NY Times article on fibromyalgia; if the effing eff word offends you, don't read this one

OK, now that everybody's writing about it, it's beginning to seem like just a lot of words. I'm going to let it go with a few choice excerpts from Rosemary at Sophy's Journal. Which is really hard because every word of her post is GREAT. I so get a charge out of every reading. I'll guaran-darn-tee ya, ya won't be bored by her "venting" letter to the author of the NY Times article!


Excerpted from Open Letter to Alex Berenson of the NYT, in regards to Drug Approved. Is Disease Real?

Fuck you. Seriously. It's not like those of us living with fibromyalgia get enough scrutiny already about whether or not we're "really" sick, or have to put up with crap all the time from doctors who call us drug seekers and insurance companies who don't want to cover our medications or the government who won't give us the benefits we direly need and rightly deserve or anything. What we really really needed was some asshole who didn't do his homework and clearly has a strong bias on the subject to publish an article in the health section of the New York Times calling into question whether the illness we suffer with every day is even real.


She really has a way with words.

Yes. Fibromyalgia is fucking confusing right now. No one knows for sure what it is or what causes it or why it affects the people it does or how to universally effectively treat it or if a cure is possible. And that sucks. But it doesn't fucking mean it doesn't fucking exist. There was a time when no one knew what diabetes was, when no one knew what caused pneumonia, when no one understood why people caught colds, or how to treat cancer, or if a cure for rabies existed. That didn't mean those illnesses weren't real, and the confusion around fibromyalgia doesn't mean IT isn't real, either, capice??


So eloquent, don't you think?

Fucking HELL you fucking GENIUS - the whole fucking point of new medications like Lyrica is BECAUSE all of these other meds DON'T fucking work for us and we're finding more and more that fibro is probably a neurological issue and so we're trying out drugs that effect our neurological systems instead of continually dumping more and more less effective opiates and crap into our bodies.
Do you not have ONE FUCKING CLUE?!?!


And Pfizer, take this!:

Do I think Lyrica is the cure-all of the Fibro Masses? Fuck no!
Do I think Pfizer is an evil corporation that would market holy water as the cure to cancer if they thought it could make them a buck? Fuck yea!


And in conclusion:

Does ANY OF THAT have ANYTHING to do with the fact that fibromyalgia is a real, and really serious, illness that plagues millions of people and deserves to be treated seriously??!

I'll let you draw the FUCKING conclusion on that one.


Rosemary, you're my hero.

Be sure to read Rosemary's letter in its etirety here. There's also a "more reasonable sounding" letter at the end of the post, that Rosemary sent to the NYT.


Remember, anyone who would like to respond to the article, "Drug Approved. Is Disease Real?" that was printed Monday, Jan. 14, 2008 in the NY Times, can send comments to the Public Editor at the paper, Clark Hoyt, who is driven by what readers care and complain about, at public@nytimes.com or call (212) 556-7652. You also are encouraged to send a copy of your comment to News Department at nytnews@nytimes.com and the Managing Editor at managing-editor@nytimes.com.

Identify that you are responding to the Jan. 14, page 1 article on fibromyalgia and include your name, city, and state, and give a brief description of your experience with FM. At the end of your e-mail ask that the editors at the New York Times publish a quality article on fibromyalgia.

Saturday, January 26, 2008

Voice Your Opinion! - about the NY Times article on Fibromyalgia


I got the excellent information below from the FM Network. The FM Network has been around for a long time, since 1988. When I was diagnosed with FM in 1989, there was a grand total of one book on the subject available at my library. It was a good book, but all I remember of it is that it was written by a doctor and the comparison of having FM to the life of Job from the Bible, and to the fairy tale of the Princess and the Pea. When I found the FM Network Newsletter on the internet, it was my first proof that there were others going through what I was. Anyways, the FM Network is still around, bigger and better than ever, a continuing source of "ad-free, reliable information on the treatment of fibromyalgia, coping advice, and research from experts around the world."

I must say I prefer the way the FM Network is handling this whole affair to the way NFA is handling it as evidenced by President Lynn Matellana's article titled "Time to Move Forward". I think this situation is worthy of some serious stand still attention. I'm going to follow the instructions below to register a complaint about the article with NYT Public Editor and the Managing Editor. I hope you will do the same.
Members of the Fibromyalgia Network and anyone else who would like to respond to the front-page New York Times article, "Drug Approved. Is Disease Real?" that was printed Monday, Jan. 14, 2008, can send comments to the Public Editor Clark Hoyt, who is driven by what readers care and complain about, at public@nytimes.com or call (212) 556-7652. You also are encouraged to send a copy of your comment to News Department at nytnews@nytimes.com and the Managing Editor at managing-editor@nytimes.com.

Please identify that you are responding to the Jan. 14, page 1 article on fibromyalgia and include your name, city, and state. Feel free to include in your response a few of the valid points made by the experts and ask at the end of your e-mail that the editors at the New York Times publish a quality article on fibromyalgia, its pain and symptoms you struggle with daily.

In addition, please send a copy of your e-mail to the Fibromyalgia Network at editor@fmnetnews.com so we can understand and enjoy your response, too.
For 20 years, Fibromyalgia Network has been providing support for fibromyalgia patients, their families, and treating physicians. This Member-supported organization delivers the news you can use through our quarterly Journal and other Member benefits. Our goal is to enrich the lives of fibromyalgia patients. Don't be alone with your pain, start 2008 with a new perspective. Join the Fibromyalgia Network family today or call us toll-free at (800) 853-2929

Wednesday, January 23, 2008

You've got to listen to this - radio broadcast in response to the outrageous NY Times article on fibromyalgia -

Radio broadcast discussion of controversial NY Times article on fibromyalgia, includes representatives of all the major factions:

Frances Winfield Bremer, spokesperson for the National Fibromyalgia Association, was the featured guest on the The Diane Rehm Show.

Other guests:

Dr. Nortin Hadler, Professor of Medicine and Microbiology/Immunology University of North Carolina at Chapel Hill Attending Rheumatologist, UNC Hospitals.

Alex Berenson, reporter, author of the New York Times article on FM.

Dr. Patrick Wood, researcher and clinician specializing in fibromyalgia, Chief Medical Officer of Angler Biomedical Technologies; Chief Medical Advisor for the National Fibromyalgia Association.


I have an opinion of this radio broadcast, of course, and I will share it with you. After I get some sleep. What do YOU think about it?

Tuesday, January 22, 2008

Chronic Monday on Tuesday: Update on the Controversial NYT article on Fibromyalgia - some pretty heavy hitters are speaking up for FM


Firefly Cafe watercolor by Brian Mann


Sorry to be late with Chronic Monday again - I got to go to Savannah over the long holiday weekend that is close to my birthday - thank you Dr. Martin Luther King! We ate at the Firefly Cafe, which is most excellent. I had that great Southern traditional dish, Shrimp and Grits. Then we did a little bit of house looking in the historic district. Mom and I are looking for a house with some kind of rental unit included. Then it was on to the shopping! It was a wonderful trip, marred only by the severe sleep problems I am having - the only sleep I had the night before this great adventure was in the car on the way to Savannah. I was very tired but the only other consequences of my sleep deprivation the night before were that when I came out of the bathroom in one of the malls I wandered straight into the men's room. And of course there was a man coming out at the same time, to add to my embarrassment!; and one time I came close to trying to walk out of a store through the full length plate glass window.

This level of sleep disorder is new to me. I've never been one of those people who COULD stay up all night, like other people I've heard talk about it after a big exam or just staying out all night partying then going to work the next day. Well, more posts to come on this topic for sure. I have a copy of my sleep study results but I don't get to talk to the Dr. about them until February.

So, about this article in the New York Times. I wrote about it briefly last week, and linked to the article. Since then there have been several heavy hitters step up on the "Fibromyalgia IS real" side of the controversy. I am printing all of the emails I have received on the subject, in the order that I received them, below. I will do a more specific post later this week.

Most of these email excerpts link to other sources with even more excellent information and responses to the article. This is a really long post, but I'm going ahead with it because I wish I had it all rounded up in one location like I've done it here.


"Member Alert — The Danger of Misinformation in Medical Reporting

Those of us who are concerned about people who live with pain have always known that educating the public, as well as the medical profession, is critical. Ignorance about persistent pain as a disease is a major roadblock for its victims. A misinformed public is less likely to provide the financial and professional resources needed to combat the serious public health issue of pain.

A disturbing trend in the press in covering medical topics is the tendency to focus on controversy and/or the negative. One of the most glaring examples of biased reporting appeared in the New York Times on January 14, 2008, in the article, " Drug Approved. Is Disease Real?" by Alex Berenson.

While there was some appropriate commentary, the reporter included the views of well known skeptics who do not represent pain medicine in the U.S. One such skeptic is quoted as saying, "People with fibromyalgia do not adapt" — a statement that is not only pejorative, but does injustice to the many patients with fibromyalgia who do their best to cope and to the doctors that treat them.

I urge you, as a person in pain or someone who cares about a person living with persistent pain, to read the story and write a letter to the editor of the paper to help dispel the misconceptions about fibromyalgia included in the story. I also encourage you to visit the National Pain Foundation's web site to read my editorial, " The Dangers of Misinformation in Medical Reporting," and Dr. Bert Ray's editorial, " Why Pain Medication Use is Really on the Rise," which explores some of the misinformation about opioids. Please consider writing a letter to your local paper to help dispel this misinformation in your communities.

Richard L. Stieg, M.D.
Past President, American Academy of Pain Medicine
Editor in Chief, The National Pain Foundation."


"Controversial Article in the New York Times
In the interest of fairness we included an article written by Alex Berenson that was published on the front page of the New York Times. {last week}

This controversial article has sparked discussion around the globe. The author insinuates that Fibromyalgia is not a valid condition. How many people have read his work and formed an opinion based on this one man's opinion?

Make your voice heard by sending us your thoughts on this controversial article. (posted below)

We will compile your comments into one document and send them to the New York Times in protest.

Please make sure all posts are free of profanity or other unsuitable content. These type of posts will be omitted from the mass mailing.

Send all comments to turn_ip@cox.net

Sign the posts with the name you want displayed in the final copy.

The FMS Community


"Fibro and Fatigue Today: January 2008
Fibromyalgia: Is it a Real Disease? ARE YOU KIDDING ME!

Ads for a new drug recently approved by the U.S. Food and Drug Administration to treat fibromyalgia are hitting the airwaves and sparking new debates within the medical community over the very existence of the disease.

A recent article was published in the New York Times over the ‘controversy’ surrounding fibromyalgia,” said Robert Baurys, founder of the Fibromyalgia & Fatigue Centers Inc. and Fibromyalgia sufferer himself. “I found it almost amusing that this kind of denial continues in the medical community given the research and information provided by physicians, researchers, drug companies and every expert under the sun, we can clearly see the disease does exist.”

As most of you know Fibromyalgia is characterized by muscle and joint pain, flu-like pain that can be severe and constant, a feeling of exhaustion, specific tender points, body aches and muscle stiffness. It can also be accompanied by irritable bowel syndrome, sleep disturbance, headaches, anxiety, depression and a variety of other symptoms. Many patients suffer with these symptoms for years before getting help.

I was particularly taken aback by the headline on the Times piece: “Drug Approved: Is Disease Real?” “Is it real?” said Baurys. “Hmmmm, let’s ask the millions of adults in this country who suffer the effects of fibromyalgia, or the thousands who walk through the doors of our Centers looking for answers and relief; better yet, ask the numerous national advocacy organizations comprised of folks like you and me if fibromyalgia is a ‘real disease’ and what you would learn is astounding.”

“Many in the medical community are lagging behind and simply don’t understand what fibromyalgia is and how to treat it, therefore, ‘it doesn’t exist.’ Often, patients find their concerns dismissed by physicians and are considered lazy or crazy. The fact is, the condition is very real.”

Pfizer is the first drug company to have an approved fibromyalgia medication, Lyrica, on the market. Lyrica works by reducing the extra “electrical” signals sent out from damaged nerves in the body. The Fibromyalgia and Fatigue Centers have been using the drug in conjunction with other treatment protocols since it was approved in summer 2007.

“There is no such thing as a miracle pill, but Lyrica is helpful in treating some of the symptoms”. “The key isn’t a ‘one pill pop’ cure, but rather treating the underlying factors which often are infections or conditions that must be treated in other ways for full recovery. Lyrica was designed to be used in combination with other treatments so that all of the underlying issues are resolved. Used in this way, it provides optimal results.”

“Treatment requires an extensive knowledge of the specialized field and focus on the underlying causes rather than just the symptoms,” said Baurys. “Tremendous advances have been made in the understanding and treatment of this disease. Successful treatment requires a comprehensive approach, determination by the patient, and support by those in their lives. It’s our goal to develop individual treatment plans that lead to significant change and positive outcomes for our patients.”

Sadly, there is so much garbage and gimmicks out there that it can be difficult for the uneducated public to decipher what’s real and what’s not. “So, kudos to the American College of Rheumatology, the FDA, Pfizer, advocacy groups, treatment facilities and those physicians who care enough to research the answers.”

Either we are all crazy and lazy or indeed, fibromyalgia is coming to the forefront.

F&F Press Release"


"Media Alert

Dear APF Advocates,

This week, there has been much controversial media coverage on fibromyalgia and chronic pain. The New York Times published an article, Drug Approved. Is Disease Real?, which questioned the validity of fibromyalgia and chronic pain itself. The article suggested that the pain of fibromyalgia is a case of people who “obsess over aches that other people simply tolerate,” and that the pain is just a “physical response to stress, depression, and economic and social anxiety.” This is an extreme and harmful mis-characterization of the reality of pain.

See Background Information and Additional Media Coverage

The public and the media need to hear from you! whether you are a person with pain or someone who cares for or treats people with pain. APF is dedicated to raising awareness of fibromyalgia and other painful conditions and the fact that people in pain have a right to timely, appropriate pain care.

Please Take Action NOW: Write a Letter to the Editor of The New York Times.

Thank you for advocating for people with pain. Together, we will make a difference!

Best regards,

The American Pain Foundation"




From the 1/22/08 Goodie Bag #48
:
"We’re all fired up!

The Editrix

Sure, we’re all for accepting illness and finding workarounds—that’s a big part of being a ChronicBabe. After all, focusing 24/7 on our illnesses is negative. Babes want to fit in and feel “normal” instead of yakking all day about how sick we are. But sometimes you just have to speak out as an advocate for attitude changes and better treatment! We’ve got some tools to help you spread the word.

New today at ChronicBabe.com: Fighting the good fight
Put up yer dukes!

Why must we fight? An article published recently in the New York Times shows that those of us living with “invisible” illness must still fight to be taken seriously. Editrix Jenni posts a response to the NYT piece, and brings you reactions from National Fibromyalgia Association Founder and President Lynne Matallana, writer and women’s health advocate Paula Kamen and more."



Second Protest Letter to the the N.Y. Times
What can I say? Your response has been over whelming and the letters are powerful. We sent out one protest last night and tonight we have sent the second round to the Times.
I have not had a response from the paper yet, but if I do hear from them I will post it here.
With that said, here is the second mailing.

Jane
**********************************************

To: N.Y. Times
From: The Fmscommunity.org 501(3)

While we sent you a letter protesting Alex Berensons' recent article on Fibromyalgia and his quoted sources yesterday, we have received many more mailings on this subject. As an organization that exists to protect patient rights we feel that it is important to make sure the very people that Mr. Berensons' article could hurt, have a chance to be heard.

It is estimated that one in every fifty people in this country suffer from Fibro or another form of chronic pain. That is a lot of people that may be looked down on thanks to Mr. Berensons' careless reporting.

We respectfully submit our second round of protest letters.

Jane Kohler
fmscommunity.org
turnip@fmscommunity.org


(Bold and italics emphasis added by me.)

*******************************************************************************************************************
I was married in 1996. I'm 50 years old. Do you really think I would jeopardize our wonderful marriage by all at once (pretending and complaining) of horrific pain in my body. My husband works 10 hour days, comes home to cook dinner and help me fold laundry, vacuum or any other house hold chores that need to be done. Do you know how guilty I feel to have to have him help me with every day chores. I always try my best to keep our home clean. Sometimes I sit on the floor and just cry because I'm to tired and drained to lift my arms up to wash a few dishes.

I am not collecting any disability. I've put us in the poor house because of $300.00 a month prescriptions, Vitamins, supplements and more in medical bills and CO-pays. We had to sell our home and buy a ranch home because I couldn't go up and down the stairs. I have many allergies and not just seasonal allergies. I am also allergic to ALL Opiates, a lot of anti-inflammatory drugs. I am in agony. My pain is unbelievable. I recently just got over the flu, I thought I was going to die with the pain.

I have been diagnosed with Fibromyalgia in 2004. I believe I actually had it in high school. In one incident, I was swimming across the pool when all at once my arms gave way and I sunk to the bottom of the pool. My arms were felt like they weighed a ton. To weak to hold me up. I was pulled out from the bottom of the pool by my teacher.

In 1979 I was diagnosed with Viral Spinal Meningitis. I was very sick for 3 months. I always felt tired and achy over the years. I thought everybody else felt that way. In 1980 I was diagnosed with Spastic colon, and stomach ulcers. In 1996 Tennis elbows, (Osteoarthritus) right and left elbows. I had Ulna nerve transposition surgery done, for pinched nerves. It still hurt to pull and push, carry with my arms. In 1998 I had constant pain in my lower & upper back, then it started down my leg. I had a Lumbar disc removed. In 2000 I was diagnosed with Osteoarthritis in my knees. I wore knee braces for years. In 2001 I was diagnosed with Carpal tunnel right wrist, I had surgery done on that. I always had terrible pain with menses. In 2004 I had to have a Hysterectomy. I was finally diagnosed with Fibromyalgia, TMJ, RLS, and CFS. I never knew I wasn't actually sleeping all these years until I was put on medication to help me sleep. My husband would wake me up a lot during the night asking me where I was running to. That was my RLS. In 2006 I had Rotator cuff repair, Acromioplasty, and Exc. Distal Clavicle for Osteoarthritis in my shoulder. In 2006 I was diagnosed with Hypothyroidism, Plantar Fascitis, and Tenosynovitis in both feet. I could not put my feet onto the floor in the morning, I'd have to crawl to the bathroom. I had Fasciotomy surgery on both feet.

I have been to acupuncturist which helped a lot but we have reached a point where I was at a stand still with the pain. I can slide my hand down my arm and feel the nodules in my muscles, and they hurt a lot when touched. I have these nodules at the bottom of my feet as well as throughout my body, just imagine walking on them. For just a few days I'd like to see Berenson walk in my shoes (on them nodules). We need to find a cure for this devastating disease. Bereson needs to keep his opinions to himself. I have tried Lyrica and unfortunately my hands and feet swelled up and were very painful. I hope Berenson hasn't stopped any one from searching for other drugs that may help me.
Gail Simons, Rochester, NY

*********************************************************************************************

Wow, that must mean that people diagnosed cancer, arthritis, and any other condition must also live under a cloud. It is pretty sad that all people who have been diagnosed with a condition are forced to catalog their pain and get even sicker. What a totally absurd thing to say. I have had fibromyalgia since I was 8 years old (1970). I was not diagnosed until 1994. My symptoms have not changed much since that time, except that the pain is worse. Boy all those years in between before I was diagnosed as the pain worsened and other symptoms appeared I sure did concentrate much more because I secretly in my mind knew that I had fibromyalgia. My condition got worse BEFORE I was diagnosed, not after. I also do not constantly think about my aches and pains, I just try to live with them the best way that I can. I have had doctor’s tell my parent’s that I was faking it and as an adult have heard the same thing. In fact, the neurologist who was the last doctor to see me before my diagnosis fired me as his patient because I was “faking it”. The best thing the jerk could have done was send me to a rheumatologist who diagnosed me the next week. I was given medicine that within a couple of weeks completely cleared up my “flu-like pain”. I have many times taken myself off of the medicine thinking that maybe this isn’t fibromyalgia, but guess what? By late that evening I can’t even get out of bed because the pain and muscle fatigue is so bad that I can’t do anything but cry. I know this won’t convince any of those doctors who don’t believe in this condition, but maybe they should ask their peers how many have fibromyalgia and ask them to relate to them in “doctor speak” how they feel. If I could just breathe on people who don’t believe there is fibromyalgia and give it to them for even a month then maybe they would understand that it is real. Lyrica does not work for me because it causes to much sleepiness, but I pray that it works for someone that they may be relieved of this.
Beth August, San Antonio, Texas

**********************************************************************

My very active, healthy husband was diagnosed with this horrendous disorder 11, almost 12 years ago. His children and I watched as his health got worse and the pain got greater. He worked his labor job every day, until the pain was so intense, he couldn't stand to be touched. He couldn't even put clothing on, because the slightest weight sent this strong man into tears, the pain was so excruciating. I then began to research this disease, and I love how dr.s will tell you "THERE ARE NO CONCLUSIVE TEST TO PROVE FIBROMYALGIA" . HORSE HOCKEY. in a 1996 medical journal, it states that the only conclusive test for fibromyalgia ISN'T DONE BECAUSE IT IS EXPENSIVE, INVASIVE, AND DANGEROUS!!!!!!!!!!!!! It is a spinal tap that shows an elevation of substance P in the spinal fluid, and a decrease of substance S. Since his diagnosis, I have spent 3000 hrs in a medical library, researching every new thing out on this disease, more I guarantee you than this author has, and definitely more than your doctors have the time (or the inclination ) to do. Many of my husbands dr.s have said that I know more than they do, and have me go and retrieve these articles for them to review when we come in next. DON'T TELL THESE PEOPLE THEY ARE NOT REALLY SICK YOU, JERKS. NOT UNTIL YOU LIVE IN THEIR SHOES. Not until you can't stand clothes on your skin, can't bear for your loved ones to hug or kiss you, until your grandchildren walk into your home, ready to jump on your lap and have you read to them, only to stop and look hurt as they realize your too flared for them to even hug. Do Not tell me this doesn't exist, I live with it every day as I watch this beautiful, loving man struggle to live a normal life. Karol A. Rawlings

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I know now that Fibro is real. I was finally told by my doctor what I have been fighting for years.

I grew up with endometriosis, had a hystrorectomy at 27 because of it. I spent 20 hours in hard labor with my first child, I have had three C-Sections, and each time I was out of the hospital within 2 to 3 days after, not feeling that much pain, up and walking hours after the surgeries. To sum this up, the pain I have gone through most of my life, I have learned to live with, and continued to go to school, to work, and to live. Never seeing all those things as being very painful.

I had an accident 7 years ago and shattered my ankle during a show I was singing at. I watched, along with the paramedics, my ankle swell to 4 times the size within minutes. I told them to wrap it and that I was going back on stage and finish the show. They told me I had to go to the hospital since it was 2 hours away from where I was. I have been through two surgeries and now have pins in it. I have not been able to walk great with it; some days are good, some are not. I started having trouble about 4 years ago. It started with just trying to walk, then it was hard to get out of bed to stand. Going up and down stairs in a house full of them has been the hardest. Then I had trouble with my hands and feet falling asleep alot. Here I am four years later, never really knowing what Fibro was or why I was feeling so awful. I take all natural herbs and try to eat right, natural foods that is. I do not like taking meds. I got to the point where I couldn't get out of bed after working too much. For days I am bed riddin', not able to get up to go to the bathroom, the pain is so unbelievable. I would rather deliver three kids at once then deal with that pain.

It's not just pain, your hair, your skin, to have clothes touch your skin is so painful. All you want to do is stay as warm as you can and not move. My jaw and face feel like someone beat me so bad, and my fingers ache, your ears ring, it will wake you up out of a sound sleep, when and if you fall asleep. To roll over in bed is like being a burn victim trying to roll over and let the sheets just rub up against the raw skin. Your insides and outsides hurt, ache. sometimes it's a non stop pain, and other times it can be a non stop throbbing pain, you can feel a pulse throughout your entire body and each beat hurts. It gets to the point where all you can do is cry, but you don't want to move or shake with a sob because it will make you feel worse.

I consider myself to have a very high tolerance to pain as you read earlier. When I went to my doctor and told him what I was feeling and how bad I felt, he was stunned, because I don't go to the doctor but maybe once every 1 to 2 years. I only go if it is extremely necessary. He knew I was not feel well by the look on my face and what I said to him. All I knew at that point was I wanted drugs and I needed them now! He knew then that I was really in pain because he knows I don't t like taking aspirin. I don't like to take any kind of meds. So if you tell me this is in my head, I'll tell you, live in my shoes for 1 hour, that is all you will need, while this pain is going on and we will see who believes and who doesn't. I didn't believe that that type of pain was even possible. Yes, Fibro is real! It is not a disorder it is a disease. Get it right, you have an education, use it.

Stephanie M. Scribani

**********************************************************************

January 15, 2008
Alex Berenson New York Times Health 620 8th Avenue New York, NY 10018-1405
Dear Alex Berenson:
Introduction: I am a Fibromyalgia (FM) activist and patient advocate (and lifelong patient), I have presented at patient conferences and have moderated and facilitated at medical conferences for the past 17 years, longer than any currently active lay person in the FM community. I read medical journals and belong to medical societies in order to best help people with FM.
It was with dismay that I read your article yesterday entitled Drug Approved. Is Disease Real? This is 2008. That is no longer a valid question, yet it appeared yesterday on the front page of the NYTimes. You have not done your homework. And you have helped destroy the lives of FM patients by presenting uncaring, lazy doctors with tiresomely old mis-information.

As you can deduct from the angry rhetoric of 2 of the 3 well known anti-FM physicians you quoted, FM has gotten bad press. You have perpetuated it here. At least 5% of the general population suffers from this horrible disease and can find no medical support for it. They lose their jobs, their spouses, their homes, their raisons d’etre, and many commit suicide. I am the unfortunate recipient of a suicide note from a Kevorkian aided FM patient suicide and the beneficiary of a portion of the estate of another FM patient who died at a young age. I know of many other suicides, and they continue. Why? Patients with chronic pain and other unfortunate symptoms of FM, have been accused, by their families and friends, of somatisizing, known in lay terms as hypochondria. They then go to doctors who refuse to treat them, refuse to recognize their pain, tell them it must be all in their heads, and ship them off to psychiatrists who know little about how to treat pain. We call it lovingly IAIYH - “it’s all in your head.“

Since so few people, lay or professional, believe them, they often wish to end it all. They’re probably better off dead. Living like this is hell.

I have a data base of c. 1100 patient recommended doctors who believe there IS an FM (clearly they read), treat patients with respect and kindness, and help them deal with their very real disease. I’ve also received over 20,000 pleas in the past 17 years for help in finding decent doctors.

This may shock you, but in the New England Journal of Medicine recently there was a paper about doctors not reading. They only read, according to the paper, information they receive from pharmaceuticals and what they learned in medical school.
Hundreds of thousands of papers and research efforts (all funded, of course) have addressed FM, yet you chose to read and focus heavily on Fred Wolfe and Norton Hadler who have been totally disrespected in the FM medical community for over 10 years, because of their vitriol and stupidity. One of them is said to work for an insurance company which is why they claim that people invent pain for financial remuneration.

By the way, if Fred Wolfe thinks this is an imaginary disease, why did he write, with other doctors, a paper in 1995 about its prevalence in the general population? Prevalence of an imaginary disease, eh? Moreover, Fred Wolfe and many other doctors wrote the 1990 ACR criteria for categorizing FM; he was no more important than the others as you implied in your article.

Did you interview any of the most important FM investigators/clinicians, besides Dan Clauw whom you quoted only briefly? They would include Leslie Crofford, MD in Lexington, KY, Muhammud Yunus, MD in Peoria, IL, I. Jon Russell, MD in San Antonio, TX, Robert Bennett, MD in Portland, OR, Patrick Wood in Washington, DC, Manuel Martinez-Lavin, MD in Mexico City, Don Goldenberg, MD in Newton, MA, Harvey Moldovsky, MD in Toronto, Hugh Smythe, MD in Toronto, and Roland Staud, MD in Gainesville?
Why are hundreds of thousands of lazy, careless doctors willing to accept the vitriol of Dr’s Wolfe, Hadler and Ehrlich while their patients suffer intractable pain? They claim that there are no objective findings to prove FM’s existance. This is most certainly not true, and they’re making excuses. They don’t want to find them. FM may be harder to treat than cancer, arthritis and cardiac conditions, but there are lots of diseases that have no objective findings and are hard to treat. They include migraine headaches, trigeminal neuralgia, kidney stones, rotator cuff tendonitis, and many more. (1) Did their Hippocratic Oaths state that they should only treat the easiest health conditions and ignore everything else?

Moreover, doctors can’t be sure that what they do for people with FM (PWFM) is going to dramatically help them. They want to cure, but their egos are at risk. ‘Though they can’t cure PWFM, they can help them tremendously. I’ve saved hundreds of stories about mean, uncaring doctors, and 2 publishers were loathe to print them in a book, because ‘one wants to be nice to doctors.’ It’s just not important, in this country, for doctors to be nice to patients.
Do you have any idea the damage you’ve done? This will affect, not only PWFM, but also people with other awful chronic diseases, such as Chronic Myofascial Pain, Sjogrens, Chronic Fatigue, Migraine Headaches, Irritable Bowel Syndrome, and many more, because doctors will take your article as proof that they’re right. I can hear the “I told you so’s” now.

I am sending to you via snail mail, a copy of this letter and just a sampling of short papers written several years ago by some of the most important and responsible doctors in the FM Community in response to the Wolfe/Hadler/Ehrlichman’s perfidy. This is ancient history, yet you are printing it now on the front page of the NY Times. I’m also including a couple of good, short explanations of FM, and a copy of a Reference List from a medical paper, in addition to the reference lists at the end of each article, to prove to you that the medical community worldwide is on to FM and is working like crazy to find its etiology so that they can effectively help PWFM and related chronic illnesses.

Sincerely,

Betsy Jacobson
BA, Barnard College (Betsy has worked tirelessly for the FM Community since 1991)


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Fibromyalgia is; A Real Disease.
I was slim & doing aerobics 2 hrs, 5 days a week.height 5/3 weight 130lbs size 5/6.

I was up at 6 down by 11. I power napped for 10 minutes & off I went .

Raised 2 kids fed 7 in the house,had boarders, I had energy.

Then In the 90's I was getting tired.

And one day I hurt so bad in my right ankle, went to the Dr & was sent to a specialist.

I was handed Fibro info and told to learn about it as that is what I have.

Each day was pain here pain there.

I thought I do not have this.I do not want this.

I go back to the specialist and, he says Yes you do have Fibro.
I say this to you, I had a huge tolerance to pain. And now I do not.

My tolerance has been taken and my energy.

I also Have a rash from my shoulders down to my back never goes away.

I have pain when I stand up to long and pain when I lay down to long.

I even get escalating nerve pain where I go to the hospital for ex rays.

I get meds so I can live with that pain.

I do not ever sleep well 2hrs then 1 then 1 then 2.

Obsess over aches and pains? No! Not true it is real!

I may ache for a week, then get a day of rest.

Are you living in my body? NO!

I am not over weight.

I am Ticked to hear someone say it is not real.

Well it is and I have," Fibromyalgia!"

My Dr., Believes in my tiredness my pain & all the extras that come with this.

I am very thankful for him.

I hope you do not get Fibro.

For those that do. Please Have some Empathy as then you will believe.

My point is:
Does not Matter who has it, Men,boys or Women,children,Big or Small.

We are real people with Fibromyalgia!

Kim Madinsky - Abbotsford B.C.

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I read this from two different sources, your official publication being one of them. I looked at this from a different view point. To me, there was both pros and cons in the discussion of fibromyalgia being a disease.

There seemed to be an opinion that a pharmaceutical stands to make a profit from their approved drug. My, My. Isn't that what capitalism is all about? Isn't that what research is all about? Yes, research gives us clues as to what is going wrong or right but in the end, it is for the benefits that reward everyone with cure, relief, or profit.

My point of dissension is with Dr. Ehrlich who claims people with
fibromyalgia do not adapt. HORSE FEATHERS!!! Everyone I know through support groups and exercise groups with this "affliction" are extremely adaptable. We spend most of our wake time trying to adapt and solve myriads of small, everyday problems just to make our own lives a tiny bit easier. We share ways to do things that get the laundry, cooking and cleaning done, get supplies off of shelves, pick up dropped items, exercising within our own limits, and stories to bring out a smile or two, that is if we have any energy at all. We find ways to make ourselves useful , again within our own limits. Most of us are willing to try nearly anything that may help. True, chemical sensitivity takes its toll and limits the use of medications. Still, most of us find something that works for awhile.

I think Mr. Berenson might have been more positive about fibromyalgia research and caring for sufferers but he did present thoughts from both sides. It is unfortunate that the title of the article raises the question of authenticity and immediately raises that red flag yet one more time. I am sure it will not be the last time such a thing happens.

Let's rejoice in the current research and findings that are slowly making an uncontested state of legitimacy.

Marion in Southern CA

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For those of you who do not suffer from this, there are several things to say.

1. Feel Blessed

2. If you can remember the most wicked case of the flu, one where it put you down and hurt to comb your hair, that is our good days.

3. We have been told everything from it's in your head to taking powerful narcotics that kill the pain.

4. FMS people don't sleep, they pass out from sheer exhaustion.

5. people who don't have a clue, mainly Doctors don't like us as patients because we don't fit in a box. It's easier to send us on to someone else than for them to try and understand us.

6. Suicide is rampant among us sufferers and in my opinion it's because people don't believe them nor do they try to understand something that we the FMS sufferer sure don't understand. No support. You're a whack job. get over it. You don't look sick.

7. It's miserable. It's real and it effects men as well.

8. I laugh in so called medical doctors faces who say it doesn't exist. It shows their lack of training and their lack of professionalism and their lack of caring.

9. You may have good days, sort of, and there are real bad days. You don't get over this without help and if you did you probably didn't have it to begin with.

10. I have been a sufferer for ten years and the only relief I got was from a chiropractor in South Lake Tahoe who specializes in FMS patients only. That is not a free plug but honest fact.

Barry

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I've just read this article which I found on the front page of the Health section of the NYTimes' and find it sadly lacking in info on the disease while working very hard to question both Lyrica and Fibro. If this article had been on the financial page I could maybe understand questioning it as a new drug but not here, it's too personal, to full of distortions and ignorance to be where I found it.

He has basically dismissed the disease as one more complaint from middle age women ( actually it's more women of childbearing age) while choosing to make them also sound weak and complaining, not strong enough to cope with the pains that come with life. How very sad this man is, how thoughtless he is to write these things without knowing the stories of the people he dismisses. With only a nodding acknowledgment of talking to one person with Fibro, then on to the statements of Dr.'s that don't want to acknowledge Fibro exist, mostly the denial comes because they would then have to treat it and it's a no win situation for them because we don't get "well". These words were actually told to me by my former Rheumatologist along with the statement that Fibromyalgia patients take too much time and it's not worth it to him financially. He would make much more working with people with RA. He is still a Dr, and has become fairly well known in the area explaining the virtues of Embral for RA, I even saw him on a local noon day talk show. He became a highly paid Dr for his appearances and doesn't have to deal with us complaining Fibro patients anymore.

There is not one of us, these Fibromyalgia patients whose illness Mr Berenson dismissed in this article, that doesn't have painful and traumatizing stories to tell or years of being told it's all in our heads because the lab work doesn't say what's wrong. My heroes are the Drs. that have had the strength and courage to stand up against their peers and tell what they know, that this is a real disease, cause unknown maybe, but a real life altering disease.
Fibromyalgia is NOT "vague complains of chronic pain", it is a problem of the central nervous system, it has specific ranges of physical pain points, combines with a number of defined illnesses such as IBS, sleep disorders, TMJ, migraines, chronic fatigue syndrome and many other diagnosed problems. Not everyone will suffer all of these or at the same time lines in their lives, but it's specific enough to have come to the attention of the doctors that took the time to listen to their patients not just a lab test. There have also been neurological studies that prove many of the changes in our central nerve system, in the way our brains perceive pain but these don't show up in blood work, so to some it's not important. One of the simplest ways to understand the disease, from the pain problems to the legal aspects of it is here. It's a clear cut article about Fibro that was presented in written form before Congress in 1998 but still as relevant today as the day it was written.

It's been known as a syndrome, which is a combination of symptoms when all added together made the syndrome. MS is a syndrome, Lupus is a syndrome and many more start out being known as syndromes and then acknowledged as diseases. To be dismissed by this man, Alex Berenson, without personal knowledge of Lyrica or Fibro, is so far from being helpful that I will not be reading another thing wrote by him as I have no faith in his ability to professionally cover a story.

Personally I was put on Lyrica almost 3 years ago for diabetic neuropathy and shingle pain and am extremely grateful for the relief I've had from it. It was not being used as a Fibro drug back then in my area but as a Fibro sufferer for 33 years, ( yes, before it had a name) I knew I had received relief from it without knowing that people in other areas, like Louisville,KY, were in clinical studies for the use of it for Fibro. I only knew why I was given it here and not only was it amazing for the nerve damage but had given me some relief from the Fibro pain.

I won't say it's the miracle cure, a miracle answer, for us. I will say that I have personally receive help from it, know of others that have had various degrees of help from it and if it can help one other person the way it has me I will be grateful for it. No, it's not a cure, but it's possibly a way, a chance, to become a little more like our "old" selves. And that's all we want, just to be our old, normal selves. Nothing fancy, just us again.

Pat Bennett
pkb413@gmail.com

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To Whom It May Concern:

Fibromyalgia is a real syndrome and a survival characteristic to prevent a person from flat out driving themselves to extinction. How do I know this? I’ve had fibromyalgia for 33 years. You will hear the same kind of stories from fibromyalgia sufferers. They went on through the pain and kept doing and doing and living through one trauma after another and never getting any relief. I am one of those people.

I grew up with alcoholic parents. I worked hard in school often on honor roll. While going to school I worked nearly full time at McDonald’s (this was before laws were passed to prevent working high schooler’s half to death) and I was responsible for housework and laundry for the entire family. In my senior year of H.S., I had a car accident that caused my face to hit and break the steering column of the car. I was wearing a seat belt. How many H.S. kids do you think wore seat belts back in 1973? I split my lip in half and had to have 36 stitches to put it back together. I waited 4 hours for the plastic surgeon and stayed still while they stuck needles straight into the wounds to numb my face. You can’t tell I ever damaged my lip I healed so well. After graduation I went into the U.S. Navy, where I had a wisdom tooth extracted (my personal dentist said it would never need removing) and the dentist (quack?) caused an infection which went untreated for nearly 3 months before a competent oral surgeon cracked my jaw again and according to his words, “took out the dead and traumatized bone”. I’ve suffered from vertigo ever since. I later received an ‘Honorable Discharge’ from the United States Navy. A short time later I developed a hypothyroid condition and then severe migraines. After the birth of my 1st daughter the hypothyroid condition magically cleared up but a whole new set of symptoms came into play. The dreaded PMS symptoms, and irritable bowel. I didn’t have PMS for a few days each month. I had it for the whole month. About the only time I felt half decent was when I was actually on my menses.
I’ve had boils erupt, unexplained rashes, blurry vision, fatigue, pain (joint and muscle), muscle tension, cramps, muscle weakness, heart palpitations, hot flashes and so much more since my early twenty’s. With each trauma in life the symptoms worsened and I fought harder to overcome them.

I’ve fallen down a flight of stairs, given birth to 3 daughters without the wonder of an epidural or any other pain medication. Natural childbirth I believe they called it back then. I struggled through 4 years of college while taking care of 3 daughters, being a Camp Fire leader, camp counselor, faith formation instructor, and even chairperson of the faith formation committee. In July of 1998 I had a hysterectomy with a whoops (a severed artery to an ovary) and nearly bled to death and didn’t have any transfusions, but I was back for my last year of college the next September and still raising 3 daughters, with a sick husband on permanent disability.
Then the real trauma hit. I woke up one night in 1999 to my house burning and my oldest daughter and my little 16-month-old granddaughter died. Then the next year on the same day my husband succumbed to cancer and 6 weeks later my brother committed suicide. I kept right on plugging along working part-time, taking care of my two teenaged daughters, getting them to therapy and grief counseling and hurting an so exhausted.

I’ve never taken street drugs, seldom ever drank, quit smoking years ago, yet my body and the medical profession have betrayed me. I am an intelligent person who has an incredible creative process, yet I cannot work. Do you have any idea how angry that makes me? And the feelings of guilt, we won’t even discuss.

Doctors and lay people who judge me just a ‘big wuss’ or ‘pansy’ are cruel and uninformed. I don’t know why the doctor changed his mind, whether he had a wife with fibromyalgia and they divorced and now he hates her, so fibromyalgia no longer exists or if they took his grant money and he’s ticked off or whether he’s just gone round the bend, but I resent a newspaper, that is read nationally and taken seriously by its readers, printing an article without the latest findings from other doctors who have more current information and printing the opinion of one doctor, who after all is only a man, as though he is a god who can ‘giveth a syndrome and then taketh away the syndrome’.

Did I mention my favorite symptom of fibromyalgia? Fibro fog. It is a lovely part of the syndrome where your thoughts go fuzzy and you simply can’t remember things. I was donating blood one day and I literally had to look at my driver’s license to find out my name. Just this afternoon I was saying the ABC’s and was not sure if I was getting them right or not. Yet, right now I can write this letter and be mostly coherent or at least it seems so to me. I am most disappointed in your newspaper. I though better of ‘The New York Times’. Ah, well, I’ve been to enough doctors, that I’m pretty good at handling disappointment. I just thought editors and news journalists were more attention and detail oriented. Live and learn.

Sincerely, Dianne R. King-Fitch, Ocean Park, WA

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The first thing I wonder after reading the article is how much of the current Fibromyalgia literature has the author read and/or understood? The author is basically implying that all of the wonderful research that has been done related to Fibromyalgia not only has no validity, but that it's generators are just trying to come up with excuses for non-existent symptoms affecting a large number of us fat, lazy, complaining, ignorant, unable-to- cope -with -life middle-age women. I wonder how many personal stories or case studies has the author made himself familiar with before making judgment. Does this author realize that it is statistically extremely unlikely that ALL of the authors of every article describing fibromyalgia research or experience could be incompetent? I think it also statistically unlikely that ALL persons receiving a diagnosis of Fibromyalgia are merely displaying behaviors related to hysteria, hypochondria or depression/anxiety. If the author has any training in the sciences, where is the point-by-point discussion of the rationale behind his statements, and the research behind the mere opinions he is offering as an attempt to refute actual data?

This article is just another in a string of opinions offered without basis in fact, to explain away information that for whatever reason the author just does not want to recognize as legitimate. A lot of us "Fibromyalgics" can tell you that the pain we experience is not something that any human being should be made to "just tolerate." (There is also a Patients Bill of Rights that describes the right to be treated for pain) Pain is interruptive of daily function, concentration, relationships and overall well-being (Does the author truly need to be convinced that pain is just bad?) We are honest, hard-working and intelligent. I wonder what the author thinks the motivation for us would be to give up all of the activities we love, to lie about how hard it can be at times to walk or to just take a shower and get dressed; to stay home when your friends and family are going somewhere and you stay home alone because you don't feel well enough. I can state very specifically what types of symptoms I have experienced, and what has worsened or improved them. It is repeatable; that is, my body responds in a predictable manner, consistent within the framework used to describe fibromyalgia, including the presence of central nervous system sensitization. I think that many Physicians that have not read or just not subscribed to current research related to Fibromyalgia are unwilling to channel in any positive way their frustration with the difficulty in knowing how to deal with the variance in each individuals presentation of symptoms. This requires a desire on the part of caregivers to listen, and to work with each individual until the most effective combination of interventions is arrived at as a result of the patient-caregiver partnership. Didn't they used to place people with Parkinson's disease in mental institutions because they hadn't yet created a medically-based definition/diagnosis to account for such "strange" behavior? I wonder how the author would feel if he went to his physician with a description of some symptoms that were causing him to be unable to function in some manner, and the physician, who one should be able to trust to at least offer a referral to another physician that DOES have an understanding of the problem if he does not, merely gives you a dirty look, forgoes any examination or the taking of a medical history and tells you to go home and "just tolerate what the rest of us do."

Cynthia

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The article from the New York Times concerning fibromyalgia was a real insult to those of us who truly suffer the pain (whether it is real pain or perceived pain) of fibromyalgia. The quoted researcher has done indescribable damage. I know that you are not the source of the words.

I take two medications to control the pain (with others in case of breakthrough) and anyone who might see me when I have been out of the medication due to failing to get the script refilled on time would realize immediately that something was seriously wrong. I will end up in bed with an electric blanket turned all the way up, several blankets piled on top to weigh down on the muscles, in fetal position, unable to sleep or get comfortable enough to be calm. After several hours of that, I am near hysteria; and there is no one else around for whom I might perform. It is often all I am able to do.

On most days, having had my medication, I have just the usual pain and aches of other 70 year old women; and as long as I am careful about the things I do and manage my energy, I function like a real person. But there are still those places where I cannot stand to be touched: the pain when touched in those places is extreme unlike any pain I have known. And those are those 18 fibro points; and they are very real. And they are very painful.

Linda Traylor
alert59@hotmail.com
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I had been hospitalized , lost my job, and apt. etc. I took the first clerk job I could get with a 2.00 pay cut just to get some money coming in. The job was at Walgreens. I got written up by the manager supposedly because some customers complained that I did not smile enough. This happened twice in a couple months. I tried to explain that the vertical lines around my mouth were permanent, hereditary some of it, as my mom and dad had them as well as since I was in pain all the time, my face had become kind of set as I clenched my jaws all the time or sometimes gritted my teeth. ( I also have TMJ.)

I had NEVER been written up at any other job any where before for anything. However I was due to receive health insurance and I know they got wind of my health problems and wanted me out of there. They did not want to insure me.

I quit as I had also developed nerve pain, tingling, and numb areas in my left thigh from hip to knee and could not STAND to have fabric touch the skin etc. I was also trying to work 8 hours a day, 7 days a week and I could not make it. I lasted 5 months.

Total humiliation....being almost fired for not being able to fully smile because you hurt so bad. I fugured it would be better to quit than to have a firing on my record if I ever tried to work again.
IF I did not have prayer and my faith....I would have nothing. You cannot be an atheist and have Fibromyalgia and the rest of it. At least I wouldn't think so!

I look forward to meeting my Lord someday...pain free!


I do hope that someone comes up with something for me before that.....I do still have hope!

Take care....we got to just keep on keepin on! What else can we do?

Petra

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I WOULD LIKE TO CHALLENGE MR BERENSON TO SPEND A DAY
IN MY BODY. WE ALL KNOW THAT IS IMPOSSIBLE, BUT MAYBE
IF WE COULD GET SOMEONE TO STAY WITH "ALEX" FOR A DAY
AND EVERY MINUTE OR SO GIVE HIM AN INDIAN BURN ON HIS
LEGS, ARMS, FEET, NECK, OH HECK LETS JUST GIVE HIM A
LITTLE ELECTRICAL SHOCK EACH MINUTE ALSO. THEN WE CAN
FIND A WAY TO CRAMP UP HIS ARMS AND LEGS, MAKE HIM A
LITTLE FUZZY IN HIS THINKING AND WHAT THE HECK LETS
GIVE HIM THE WORST CASE OF BODY ACHES HE HAS EVER HAD.
I IMAGINE HE WOULD SURVIVE THE 24 HOURS BUT NOW LET'S
TELL HIM THAT EACH DAY FOR THE REST OF HIS LIFE WILL
BE A REPLAY OF WHAT HE HAS JUST GONE THROUGH. I HAVE
SUFFERED FOR YEARS EACH AND EVERY DAY WITH MORE PAIN
AND DISCOMFORT THEN MOST PEOPLE WOULD EVER BE ABLE TO
HANDLE, BUT EACH DAY I WAKE UP AND LIVE MY LIFE.
YOU MAY NOT SEE THE EFFECTS FIBROMYALGIA HAS ON MY
LIFE, BECAUSE LIKE OTHERS, I HAVE LEARNED TO LIVE WITH
MY LIMITATIONS. I CHOOSE NOT TO PISS AND MOAN MY WAY
THROUGH LIFE, I WOULD RATHER LIVE IT AND IF A
MEDICATION COMES ALONG THAT MAY HELP ME DO JUST THAT,
WHO ARE YOU "ALEX" TO DISCOURAGE ME AND MANY OTHERS
FROM FINDING OUT FOR OUR SELVES IF IT WILL WORK. STICK
TO WRITING ABOUT THINGS YOU KNOW RATHER THEN
SPECULATING ON WHAT LIFE WITH FIBRO IS LIKE.

COLLEEN CURTIS-BODNAR
ROCK, MI

C. Curtis-Bodnar


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I have had Fibromyalgia for many years and I am NOW 42 yrs old. I have been in widespread pain all my life never knowing what I had. I have been through every test you can think of from blood tests, x rays, scans, and etc. No they don't have any tests to diagnose this illness and they go by what you go through, what you say, and how you feel everyday. There are MANY Doctors and Specialists that do not believe in these illnesses, they are the ones that need to be educated on a NEW illness out there, but this Illness has been there for many yrs they just didn't know what it was then. There is so many illnesses and diseases every day that are out there in the world and do they know what they are? No they don't! That is why there is researches going on everyday.Since when are you a medical professional anyhow? If you are in the mecial profession why are you out there looking for something to help us get better in the first place instead of writing mean columns in the New York Times about something you have NEVER experienced !! As far as I know you are just a newspaper journalist. Just close your eyes and imagine your body seizing up on you to where you can't move your body because your body feels like rigamortis while you are alive or imagine you are on fire from a extreme burning sensation, or pain that is so excruciating that you wish you only had a normal body. Just think of times where you can't even do anything but lay in bed all day because you can't move a muscle and why? because every muscle in your body hurts. I have pain 365 days out of the yr 24/7. Yes we deserve a answer to all our pain, yes we deserve something to relieve all our pain like any other illness or disease that deserves their right to feel better, whether it be Lyrica or anything else that MIGHT help us. I just turned 42 yrs old this month and I have been told my MEDICAL Doctors and Specialists that I am not able to even push a vacuum cleaner, I am not able to rake the leaves in my yard, push a lawnmower, enjoy a normal life with hard play on the weekends, and to top it all off I have been told that I can never work again on ANY job. Yes I am only 42 yrs old and you know what I would NEVER wish this upon anyone. My family and friends have watched me go through this all my entire life and never had any answers to why I have such Chronic Pain. I have the most WONDERFUL Doctor now and yes HE DOES BELIEVE IN ME and DOES BELIEVE that there is such thing as FIBROMYALGIA. There is no cure for this Illness but there is ways to help us to deal with the pain. Everyone is different with medications, some can take things and some cannot. I help run a Local Fibromyalgia/CFS/Chronic Pain Support Group in Northern Wisconsin. I hear of many that have tried Lyrica and some of the members got relief and some have not. I have even been on Lyrica and it has not worked for me. I am on NO pain killers and in fact I have been told there is nothing left for me to try because NONE of them help me! No I am NOT as YOU say a Chronic Complainer in fact My Doctors and Specialists BELIEVE I was born with this Chronic Pain. My mom has Fibromyalgia and my Brother has Fibromyalgia too and NOW I believe my son has it and he is only 17 yrs old. I have tried MANY medications and my medicine cabinet would look like a drug store IF I had kept them all and since nothing helps that means I have to deal with my pains everyday but I have come to know the use of alternative ways, herbals, juicing, & vitamin supplements, yes these help some but I still deal with my EXTREME PAIN EVERYDAY.Something out there will hopefully help me one day, but it takes money to find the right thing for me but that is something that I don't have is MONEY. Since I am not able to work anymore ( I have worked for many yrs as a workaholic in the medical field helping others) I am in the process of fighting for my right to my social security benefits but have I no answer yet and if I get denied I will fight it to the end because my Doctor said to since I am not able to work the rest of my life. i feel like my home life is very fragile because I used to be able to work FT but I am a fighter!! I will tell you I have the most supportive 17 yr old son you could ever imagine and my new husband is learning and he has been there for me all the way. We 3 pray to God in Heaven that someday there will be a cure for this Illness. This should be considered as a Disease, if you feel like you said that this is not a Disease then why does a lot of people have it? A lot of our symptoms are the same and some are not but if you get educated in this you will come to see that the majority of our symptoms are pretty much the same. I hope and pray that you will never get this illness nor any of your family will ever get this illness - maybe somewhere along the line someone in your family has it now and you might be someone that doesn't believe in it and so you write columns in the New York Times like this to show you - YOURSELF don't believe in it. We try so hard to find things out there that will help us and for people like you to run us down in the dirt because we hurt is SO WRONG!! There are so many different diseases and illnesses out there - for instance: High Blood Pressure, AIDS, Cancer, MS, Alzhemiers, Dementia, Ptsd( (a Military trama), and more and you think you have the right to run us down because we have FIBROMYALGIA? Did you write a column on those others too because you did not believe in them either? It is sad that there are people like you out there that don't believe in anything. I will pray for you for you to live a perfect life and not ever have any pain! This ILLNESS IS REAL & DEBILITATING!! It would be good if they could find us a CURE or at least something that can kill our PAIN. We need more people with FREEDOM of Speech to stand up for our rights to tell about Fibromyalgia and the many other Chronic Illnesses out there. We need a CURE just like they need a CURE for Cancer and all the other diseases out there! Thank you taking the time to read this free of speech that I have too.

The Holmes Family ~ Northern Wisconsin


We Support Fibro Friends!!

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What is one to make of Alex Berenson whose front page N.Y. Times article insinuating that fibromyalgia doesn't really exist all but sent medicine back to the dark ages? And to think that for 18 years I've been hoodwinked into thinking I was in pain! Mr. Berenson apparently has no first-hand experience with chronic pain or he wouldn't be quite so quick to take sides with the likes of Dr. Wolfe and other doctors who have no patience dealing with a difficult but very real disease like fibromyalgia. These doctors have fragile egos and are easily disgruntled by symptoms that are not easily "fixed" by aspirin and 5 minutes of their time. The thought of actually listening to a patient and having to try several treatment options to alleviate the painful condition is just too much for these captains of compassion. I know this from first-hand experience because I have fibromyalgia, as does my daughter.

In my capacity as a hospital chaplain, I participated in a very detailed seminar on fibromyalgia at our hospital and overheard the rude running commentary of the non-believing practitioners expressing their disdain for any and all silly women who have the gall to want to be treated with respect and, even worse, want relief from their daily, unrelenting pain. At the end of the seminar I revealed myself as a fibromyalgia sufferer to these "gentlemen" and you should have seen their guilt-reddened faces and heard their profuse apologies.

Yes, to many physicians, fibromyalgia is a joke. Those of us with FM have had the misfortune to be their patients at one time or another. They usually just suggest that it's "all in your head." How helpful. If you don't know how to treat something, just claim it doesn't exist. Problem solved.

Fortunately, there are many doctors who are helpful and compassionate and actually succeed in helping their fibromyalgia patients. They realize that real symptoms require real treatment. The fact that fibromyalgia sufferers report many of the same set of symptoms only strengthens the definition of this condition, the same as Lupus, MS, arthritis or for that matter, any disease.
The fact that Pfizer will make money on Lyrica should not be held against it. You would think that Lyrica is the first drug being advertised on TV. According to Mr. Berenson's logic, because we see ads on TV for Lipitor, it is proof that high cholesterol does not exist as a health problem.

Despite the gloom and doom expressed by unbelievers, Lyrica is making a significant difference in the pain level of my 33 year old daughter. I intend to see my doctor and ask to give it a try. He listens to me. If he didn't, I wouldn't be his patient. I'm hoping that Lyrica may actually work, Dr. Wolfe's dismay not withstanding. (I hope he is not too upset that Bayer has made a fortune on aspirin.)

Janice B. Bennett, Chaplain


Round Lake Beach, IL

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I am a 51 yr old women, who has been diagnosed with Fibromyalgia about two years ago. The Doctors were not sure what I had, for many years, they just knew it wasn't normal with all the symptoms of pain I was displaying. When I was diagnosed with this Fibromayalgia, I still had no idea of what it was. I did a lot of research on it, and found that it was exactly what I was going through. I have been seeing a Pain Therapist for almost 2 years now. I've just now come to grips with the whole realization this last year, of how devastating Fibromayalgia has been on me. I don't work out of my home, because I can't, anymore. I remember day after day, night after night, being in pain, it was so bad, I would just lay there and cry. I really don't know how many people are on pain killers, I've tried one drug prescribed for me, however they recalled it, so I went off of it, and haven't been back on any since. I go through this pain on my own, with only aspirin once a day. At times the pain is unbearable for me, but I suffer through it. I have a 12 year old daughter, living at home, and life has been turned up side down for us both. Many days and nights in bed, where she had to bring food to me in bed, help me walk from room to room, and at times I couldn't even let her touch me. The reason she couldn't touch me was, when someone has Fibro, just a little touch against your skin can make someone scream with pain. If you know how if feels to have a bad case of the flu, with aching, pain, and fatigue this is how life is for Fibro suffers most the time. I can be walking in the mail with my daughter, and feel as if I just got ran over by a truck, I can't walk or move any longer, I have to seat , wherever I am, and rest right there. This fatigue is just another symthm of Fibro. I now have a walker so I can walk with my daughter as much as possible. This is a real condition, and I think you should thank God you don't have it. I, as many others along with me will agree, we didn't ask for this, we don't gain anything from it, nor do we like it. But sometimes in life, you just have to deal with the cards life has dealt you. On a scale of 1 to 10 for pain, I would have to say I'm at a 4 to 5 on a daily basis. Other times, I go as high as a 10 and more. I sleep with heating pads, sometimes all over my body to relax the nerves so therefore I can relax and sleep. No one can tell me this is not real. Do a study on the Fibromyalgia family members and find your missing data there...if you can't or don't want to believe in the people who really have this awful burden.

Just another Fibormayalgia sufferer

Debra

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I have tried to convince myself that my pain and burning in my muscles plus lack of ability to sleep and process new info etc., etc., are all normal processes for years. At first I thought I was going crazy and I even told my husband at one point he needed to find a different wife to grow old with because I truely could not understand how my body and brain suddenly seemed to be failing me. I rapidly lost my ability to do my job as a bank teller and could hardly move every morning. I was lately getting hopeful for a cure. Who s Alex Berenson and would he like one day in our shoes?


*********************************************************************

Dear NYT,

How could you be so irresponsible as to print any comments from one who is so stupid as to make medical decisions when he is not qualified. So much form your image as a real newspaper. Next time anyone on your staff is ill, by all means, send him or her to this idiot for treatment. In fact, why go to a medical doctor at all. There is a "witch" in Trenton, Georgia, that has hastened a few to early deaths because she thinks she can make medical decisions without a medical background for money. Buy her herbs. God forgive you all for making millions of lives more miserable than they already are.

Sincerely,

2 master degrees, minor is science

The FMS Community"




Whew!!! And the letters and press releases continue to pour in. I'd say that in the long run, this is going to turn out to be a good thing. I have not seen anything else that has mobilized all of the different FM interests in the same difection like this has.

Friday, January 18, 2008

"Stay" by Sugarland

I stopped by the good consignment store the other day, as is my wont (rapid weight gain and loss, thanks to meds with weight gain as a side effect, and IBS and major traumas that send me the other way, into rapid weight loss - which means I haven't been able to get stabilized and into a consistent clothing size since, let me see, the mid '90s, so I'm always looking for those super bargains that you only find if you look...) but I digress.

The young lady at the cash register in the consignment store jumped up and ran to turn this song up on the radio and then proceeded to sing along and it was beautiful. Then today I happened to catch the video on CMT and the lady who sings it, you just know this song happened to her and it's sad, but it's life... enjoy.



Sugarland official website


Here's Jennifer telling about this video and why she wrote the song, and a live version after:

"The inspiration for it was, I heard Reba McEntire's 'Whoever's in New England,' and I thought, 'What a great song.'" Jennifer says. "I really liked the story of it. At the same time, it's a story that you hear a lot — the jilted lover, the one who has been cheated on. I thought, 'You know, in that situation, there are three people hurting. Ain't nobody really happy. What if you were bold enough to tell the story of that other woman, and what she feels like in loving someone that is not fully hers either and knowing that there's another woman that's hurting because she's in the picture?' That's complex, adult stuff. Ultimately, it's about the redemption of loving oneself enough to realize, 'I am worth more than this situation. We're all worth more than this situation, really.'"
Jennifer says she and partner Kristian Bush plan to keep digging even deeper lyrically in their next album. "I know I want this album to be even more authentic than the last," she says. "Authentic to where we want to be artistically, and authentic to the human spirit. I want it to be the next step, grabbing a piece of someone's heart and showing them themselves — 'Don't you feel this way? Can you feel this way? Have you felt this way? I feel this way.' Artistically I want it to be that.
"On another level, when that is true and the song rings true, then it's going to be successful," she continues. "People want to feel something. Even if it's a sad song, they want to feel validated that they themselves are understood, because someone says or sings what they feel. It is time to stretch, and we all know it. Fans know it. Nobody wants to hear the same thing over and over. People want something different. They're so bored with everything sounding the same."

Tuesday, January 15, 2008

Chronic Monday: The New York Times is still using "IS FIBROMYALGIA REAL?" as a headline???!!!, plus the NAMI Peer-to-Peer Outreach Program

Dr. Nortin Hadler's "Mediicalization of Fibromyalgia" theory strikes again. I'll write more on this when I do the final post on the Revolution Health article about "getting over" FM.

Click the link to read the NYT article and to vote.

So far 71,000+ have voted and 1,910 have left comments.

I'm late with Chronic Monday this week because on Sunday I went for a 2 hour drive to take NAMI's Peer-to-Peer nine week Recovery Curriculum. The class was 2 hours, then the 2 hour drive back home. This pushed everything in my life back a couple of days, and I realized late Sunday night that to continue with the course would be pushing myself to "live outside the envelope" as they say on the CFS/FM Self-Help site, for the entire nine weeks and probably beyond that as I worked to get myself back to where I was before starting the class. I'll keep working on it and hope to be able to take the course when it's offered again later this year.

Meantime, here's a video that tells all about it:

Thursday, January 10, 2008

Made me laugh...


From Dr. Teitelbaum's latest newsletter:


Jackie's joke—

A frog walks into a bank & up to the teller. He says to the teller, "Hey Honey, I want a loan." The teller looks down at him & responds, "First of all, my name is not Honey, it is Patricia Whack. Secondly, I can't give you a loan because we don't give loans to frogs."

After a few minutes of debate about the loan, the teller explains that for a loan, one must have collateral & frogs don't have any collateral, therefore, no loan.

With that, the frog states that he actually does have collateral & offers it up to the teller. He places a small white ceramic elephant in the teller's window.

Seeing the frog, the teller picks it up, looks at it and announces that she has to discuss this with her branch manager & asks the frog to wait.

So, the teller takes the little white ceramic elephant into her manager's office and says, "You aren't going to believe this. I have a frog out there who wants a loan. When I told him that we don't give frogs loans because frogs don't have any collateral, he stated that he DID have collateral & gave me this little white ceramic elephant. I told him this was highly irregular & I would have to discuss it with you."

The branch manager picks up the little white ceramic elephant, leans back in his chair & examines it for a minute. He sit's up and says...

"Oh good grief! It's a knick knack Patty Whack, give the frog a loan!"



Jackie's quote—

"It ain't easy being green." — Kermit the Frog

Sunday, January 6, 2008

Chronic Monday: A patchwork of items on CFS/FM and chronic illness for the New Year

We made Time magazine's Top 10 Medical Breakthroughs!
#7. Relief from Fibromyalgia: Lyrica



Frances Winfield Bremer, Wife of Ambassador L. Paul Bremer, III, to Become Spokeswoman for the National Fibromyalgia Association


Biography of Frances Winfield Bremer
Frances Winfield Bremer is an American author, and the wife of former administrator of Iraq, L. Paul Bremer III. Some of Mrs. Bremer's published works include "Running to Paradise," which follows the story of a Catholic priest who is also an avid runner, and "Coping with His Success: A Survival Guide for Wives at the Top." She is also a teacher, and an experienced artist.
Source - http://en.wikipedia.org/wiki/Frances_Winfield

So, who is she besides the wife of a former Ambassador? This is what I've been able to find out:

2002 Video Interview with Charlie Rose - Notice Ms. Bremer adjusting her seating as the short interview goes on - I do this all the time when I have to sit for more than five minutes at a time.


Books by Frances Bremer
Running to Paradise (2000), there's supposed to be a movie based on this book in production somewhere...
Coping With His Success: A Survival Guide for Wives (1984)

"Walk A Mile In Her Shoes"

Ambassador L. Paul Bremer, III's Biography



Guidelines for treatment of FM have been released in Europe: European Guidelines for the Treatment of Fibromyalgia Syndrome


Cool Stuff -

American Pain Foundation's Pain & Creativity Art Contest Winners' Exhibit


Carried Off in the Grip of Pain by HumbleCat

More APF Pain Art



Visit Cafe Chronique


My page on Cafe Chronique

Tuesday, January 1, 2008

Ray Charles Paint Jam

I really find it relaxing to watch this guy paint. Puts me in the right brain mood, I think. Check it out when you have 5 minutes to relax.

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