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 isall 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
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 show 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
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 acknowledgement 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 Rheumatoligist 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 timelines 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
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 fulltime 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
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 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
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
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
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