Concerning the article, everyone is entitled to their own opinion, as close-minded as it seems. As a Christian, I cannot see Jesus, but have no doubt that he is there. Sincerely, Karen L. Reyes Kearneysville, WV Tabithascloset.com (Ministry to low income and/or teen mothers
What qualifies Alex Berenson to make such statements? I have been diagnosed with conic fibromyalgia by Arthritis Specialist at our main hospital here in the UK as having 16 out of the 18 points used to assess the medical condition. On one occasion I had a server attack that an ambulance was called to take me to hospital, while in the ambulance I was wired up and the gauges went off the scale while registering my pain. People like Mr Berenson obviously have a prejudice against people with fibromyalgia, until he fully understands our condition, some good advice would be educate himself about fibromyalgia. Until then, in my opinion Mr Berenson is not qualified to make such statements. David Rogers Coventry UK
To ask "Is this disease real?', is an incredible insult to those individuals for whom the suffering of fibromyalgia is all too real. My 22 year old daughter, a suma cum laude graduate of Boston University has had her life stolen from her by this condition. Every day is a day of pain. We are well aware that the medical community does not yet understand this devastating disorder but it is wrong and cruel to say that which we do not understand is not real. Heaping more pain on individuals who suffer everyday ,by spurious and under researched articles such as this one, is truly inhumane. Jane A.W.S. Shiyah
Many people/Doctors refuse to accept Fibromyalgia as a syndrome. Or even accept its existence at all. I too have tried to refuse to accept it in my life as well. I felt that by giving it a name that only gave it power. It may not be "Fibromyalgia" but something in my body is causing this severe pain and fatigue. When a one time very active human being is suddenly stopped in her tracks and made unable to perform in the work-place or even at home, as she once did. Then we want to know what name you non-believers want to put on it? We don't care what you call it. Just come up with an answer for us. An answer that will finally give us the relief from pain, a good nights sleep and the ability to function as we should be able to in our everyday lives. What's in a name anyway? It gives Doctors that already overflowing waste basket of ills to throw another set of symptoms into. "Perhaps with a diagnosis they will be happy and leave me alone." You may have thrown a diagnosis at us, but you also say that there is nothing you can do for us. Well, after all of these years don't you think it's time they researched this problem thoroughly enough to come up with some answers and finally give relief to millions of people who share the same set of symptoms? These symptoms are not manufactured in our minds. We don't want to accept Fibromyalgia. But these symptoms are real and they are interrupting the normal flow of living normal, happy,pain-free lives. If "Fibromyalgia" doesn't exist, then will someone please tell me how to rid myself of this Chronic body-wide pain that has robbed me of a normal life? It's affects have a wide range of negative results. Everywhere from interrupting careers to destroying marriages. I am fortunate to have a very patient husband, but I have seen the destruction this has had on others. This "phantom" non-existing condition is destroying peoples lives and I think it's time that someone, somewhere gave these poor people the validity they deserve. Not denied by someone like Alex Berenson who has quite obviously been able to dodge the bullet of chronic pain. Good for you Mr. Berenson, but where is your empathy for those of us who are not as fortunate as you? Wishing you and your family the blessings of a pain-free life, Barbara Brindley Des Moines, Iowa
WHAT'S IN THE NAME? My wife has been diagnosed with Fibromyalgia and I CAN TELL YOU IT' HELL! Joe and Irene Roman Tampa, Florida
How I wish Mr. Berenson could spend a week in my FMS body with my IBS bowel. I believe he would change his tune rather quickly! The sad thing is that there is a modicum of truth in what he says. It is just totally...and deliberately...misconstrued. Are there patients with FMS who "obsess over aches that other people simply tolerate", who are encouraged to "think of themselves as sick, and catalog their pain", who are people who "do not adapt", who "tend to cycle among different painkillers..."? Most assuredly, there are patients such as these. They are unable to deal emotionally or mentally with their health condition, and may become sicker as a result. They would have similar reactions to any diagnosis. But does this describe the majority of FMS sufferers? It most decidedly does not! Would that Mr. Berenson had put his considerable journalistic skills to work actually looking at the work being done by Dr. Clauw andothers. With each new research, the ideas I've had for years about what FMS really is are being validated! Since day one, I've said that my pain signals are skewed. Now, it turns out, research says they truly are! I've joked about my "fibro fog" and getting old, only to see that brain scans can prove that my brain really does work differently! Had the current research been available 14 years ago when I was first diagnosed, I would have had no need to search for doctors or remedies. What we know today is not perfect, but it gives me great hope! I challenge you, Mr. Alex Berenson: Look at the other side! Mary in California
I HAVE TO SAY FIBRO IS DEFINATELY REAL!!!!!! IT CAN BE A LIVING NIGHTMARE FOR ALOT OF US. IT ANGERS ME SO MUCH EVERYDAY HEARING THAT SOME DR.S THINK IT IS NOT. I AM FORTUNATE TO HAVE A WONDERFUL DR. WHO WORKS WITH ME ON THE MANY PROBLEMS THAT HAVE HIT ME. HOW CAN THIS NOT BE REAL? THEY SAY IMAGINE THE WORST FLU YOU HAVE EVER HAD AND TRY TO LIVE WITH IT EVERYDAY. SOME OF THESE DOCTORS NEED TO DO JUST THAT. FOR A WEEK THEY WOULD BE BELIEVERS. I AM REALLY UPSET WITH ALL I HAVE BEEN READING ABOUT THIS. WHEN I WAS FIRST DIAGNOSED I WENT THROUGH ALL THIS AND NOW IT IS STARTING ALL OVER. JUST WHEN I THOUGHT IT WAS ESTABLISHED. I KNOW WHAT I GO THROUGH EVERYDAY AND HAVE TO COPE WITH IS REAL!!!!! JUST TO GET THROUGH ONE DAY IS EXHAUSTING FOR ME. I HOPE THAT ALL OUR WORDS ARE READ. YES WE REALLY LOOK GOOD, DON'T WE??? JENNYE
I want to say that I have had Fibromyalgia for a good many years and they have finally told me what it was in 1997. I have been through every test you can think of and and I still had constant pain. I believe I had this since I was younger in my teens but then I have been in many accidents and falls so it triggered my chronic pains. I have excruciating burning pains to the point that I it feels like 10 torches are lit inside my body and I am on fire. This made me bed ridden for 4 months because even if I got up to use the washroom I was on fire. I had to stay laying down all the time. I have lost my jobs over the years because i could not go to work,stand up, sit, kneel,squat,lift anything,push, pull, or even smile, yes that is right I could't even have a smile because my face even hurt. I will tell you that I have been on many different pain medications and not one of them has helped me because I have severe multiple chemical sensitivities so I am not able to take many medications due to this and also many have not even helped my pain either. I have tried lyrica "that FDA has approved" I tried this BEFORE it was approved and no it did not work for me. I have had to turn to altenative ways, dietary supplements,herbals, all to help my widespread pain or I have had to deal with it the best I can. There are many drugs out there that do help others , which is great. But you have to remember that this illness - every one is different on how they preceive pain or how they deal with it. I also would like to say that I am not 5'4 and overweight, I am 5'10 and my weight goes up and down and that is depending on if I am hungry or not due to the pain that I feel. There is days that I can't eat because I can't move out of bed let alone. You don't have to be overweight to have Fibromyalgia, anyone can get it Women,Men, Teens, and Children. There are MANY doctors and specialists that DON'T believe in Fibro, Chronic Fatigue or even Chronic Pain which I believe they should and why? Because there is reasons why I am in pain and as well as others. Yes I believe that some are probally misdiagnosed but there are many of us that aren't! When I went to a specialist in Duluth MN one of my doctors said that it is now a manditory class that ALL doctors have to take which is about "Fibromyalgia, & Chronic Fatigue" I think this should be all over the USA. Why because this is epidemic and just like all the other illnesses/diseases out there that were epidemics once like depression,anxiety, altzheimers, high blood pressure, and etc. Doctors had to take classes on them too and look at all the drugs that have helped all those and you are upset that Lyrica and many others are to be approved for Fibromyalgia? Do you know that docotors don't know exactly why people get high blood pressure? Do you know why your loved ones can't remember your name if they have Dementia/Alzthemiers? Do you know why people are sad and can't get a grip on their life and that call that Depression/BiPolar? You know there is a new illness/disease everyday out there and I am sorry there are many Doctors/Specialists that DO BELIEVE in Fibromyalgia. Fibromyalgia should be reconized in the social sercurity views also. If they can reconize someone with Bipolar/Depression and give them disability (SSI/SSDI) then they should allow Fibromyalgia to be reconized to get the benefits. Is BiPolar a disease? But Doctors will treat them with all sorts of medications and some help and some do not. Same goes for Fibromyalgia some medications help and some do not. I have been told that I can NEVER work again and I have been fighting for my disability for 3 years now, yet I have been told by 4 different specialists and also my M.D. that I can never work again and to keep fighting for my right to my social sercurity because I am one of the ones that they cannot find any pain medications for to help relieve pain. I am still waiting for my answer from Social Security and my pain is not any better and I still cannot work. Just to let you know EVERYONE with Fibromyalgia is different!! FIBROMYALGIA IS REAL! Lauri Rice Lake, Wi.
Infuriating. My pain is all too real. It makes me feel so awful that I have to go to bed...because it makes me feel too rotten to stay up. My fatigue is all too real. It strikes when I least expect it, putting a sudden end to housework, day trips, and grocery shopping. I have documentation from a sleep clinic that I have an EEG anomaly, that I never got past stage 1 sleep during my overnight stay. I have been unable to sleep without medications for five years now. I can't think straight, I have trouble remembering where I'm going, when I'm in the car. I used to work as a nurse; my career is history. There is no way I can care for patients due to my cognitive deficits. I have gone completely broke and am now homeless due the cost of the meds that I desperately need to keep my quality of life at an acceptable level. So I don't care if you call it Fibromyalgia, or something else. Whatever you want to call it, it is all too real, and it has basically destroyed my life. If you "Don't believe in it", I hope it happens to you, for a month. Then it won't matter what you want to call it, but I can assure you, you will call it something. If you "Don't believe in it", you need to set aside your ignorance, and get educated. There is no excuse for any physician being to lazy too get with the program. If you are caring for patients with this disorder but telling them it doesn't exist, you are committing malpractice.
I am outraged and saddened by the Fibromyalgia article. I have had FM for about 6 years. FM is not a fake disease. I went from exercising vigorously everyday since I was young to being able to hardly walk one day. Since that day six years ago, it has gotten progressively worse. I do not have a mental disorder and I am not making this up. I am also not lazy. I am a fighter and each day I fight to do as much as I can. It upsets me that someone can think this isnot real. Normal, active people do not just wake up one day and suddenly do not have energy to walk into the supermarket from their cars. They also do not magically lose their memory. I was a public speaker years ago who could remember 6 minute speeches word for word and now I am lucky if I remember a sentence! It is comments like this that hurt the people with FM. We need people to believe us. We need the healthcare systems to listen to our cries. We have a hard enough time having co-workers or even relatives believe us. We also have a hard enough time getting a tiny percentage of things we need covered by insurance. The last thing we need is some man who is clearly ignorant of the disease to display his feelings on the subject where millions (or more) people can read it. People need to realize what a struggle it is for a person with FM to live. Simple household tasks can leave us exhausted and unable to move for long periods of time. I cannot tell you how damaging this article can be to the FM community. I wish that he were able to feel our pain for just one day....then this would never have been written. Thank you for reading my thoughts on this subject. If you need anything else feel free to email me. Feel free to post anything I have written. Signed, Jessica Masser 3rd Grade Teacher
Mr. Berenson, After your flaming attack on fibromyalgia syndrome diagnosis, I only hope you never find yourself diagnosed with a syndrome. To be labeled a syndrome, a disorder must have a group of common symptoms with no known cause, only some vague predisposing factors. Do you have any idea what fibromyalgia is like? It's like walking around with the flu most days - the severe body aches and malaise. Most otherwise healthy grown adults completely cease to function at the point that they get the flu, yet people like you have the unmitigated gall to suggest that we "obsess over aches that other people simply tolerate." Some doctors have a "God" complex which is why some will not believe in the existence of fibromyalgia - they can't do anything to fix it, so obviously it must not exist. Ask your average, healthy 40-year-old woman what her pain level is on a particular day, and you'll either get funny looks or a comment about a specific injury that causes occasional pain. Ask someone with fibromyalgia that same question, honestly, and they'll give you a straight answer. For me, it's usually a 5 or 6, but rather than complaining, I soldier on - much like the majority of fibromyalgia patients. Drugs like Lyrica offer hope to a population which has had very little to hope for in the past. It helps to bring a better level of living to those afflicted with this disorder. Who are you to try to take that away from us? You may as well tell a cancer patient that you're not going to give them the drugs to save their lives since we're all dying from the day we're born, anyways. Sincerely Yours, Cathleen Vought Springfield, MO
Fibromyalgia is a REAL condition. I have struggled with and suffered from it for over ten years, gone to numerous doctors, tried an untold number of nutritional and herbal supplements, endured ump-teen medical tests. I work full-time, but take a large number of pain medications each day to get through, as well as Cymbalta, Lyrica, vitamins, minerals, migraine prevention medication, then go home after work and are virtually unable to do anything but crash on the couch with a heating pad and even more pain medication. On a good day, the pain is like 'background noise', it's there and very real and irritating, but tolerable. On a bad day, I am unable to function - physically and mentally; I have what I refer to as a "pajama day" - I stay in my sweats or pj's, and stay in bed or on the couch with a heating pad or two, pain medication, and comfort food. I do exercise when I have the energy, I eat healthy, I pray, I meditate, I read everything new about fibromyalgia, I get regular massages. And I am offended when someone says that fibrolyalgia is not real. The pain is real, the brain fog and forgetfulness are real, as are the other symptoms: IBS, restless leg syndrome, irritable bladder, etc. For those of us who have to work, it's difficult. Do I tell my boss and/or co-workers? If so, they understand the bad days much better. But if I don't, they don't look at me with pity on my bad days. I suggest you locate a fibromyalgia sufferer and live with them for a week - especially a week that includes weather changes, cold fronts blowing in, barometer changes, \ a full-time job with normal stress, and a family to take care of. At the end of each day, touch their back or neck or arms or hips and feel the ropes of tightened and spasming muscles. Feel their cold hands and feet. Watch them battle restless leg syndrome. Then re-write your article.
What is the opposite of a cow? BULL! The doctors that Mr. Berenson quoted are human and human's can make mistakes. If they don't believe that fibromyalgia is real they should live in my body. I have been living in pain for about a year, going to doctor after doctor and doing test after test. Finally, I went to a rheumatologist and he told me right away what my problem was. Thanks to him, I know what to do and what not to do to live with this condition. The pain never completely goes away, but since I discovered how to lessen the pain, life is at least bearable. I know what I am talking about! David C.
"Obviously, Mr. Berenson knows no one in his circle of friends or his family that has to deal with the pain of Fibromyalgia and it's complications. If only he could walk a mile in our shoes". Sandy Gahanna, OH
I would like to comment on your recent letter by Alex Berenson titled "Drug Approved. Is Disease Real? The author presents a controversy amongst some physicians, which has brought additional suffering to human beings that are already enduring cataclysmic effects from an overwhelming illness that robs them of every aspect of a quality of life that they previously enjoyed. The author refers to a recent ad by Pfizer, which advertises Lyrica, a new drug approved to treat Fibromyalgia. In this ad a woman complains of her bad day with Fibromyalgia as her muscles were aching. This ad already trivializes the overwhelming symptoms experienced by a Fibromyalgia patient, but the author implies that the approval of this drug legitimizes what some feel is a non-existent illness. I have strong feelings about this article, as I have been given the stigmatized diagnosis of Fibromyalgia. I would like to outline a bit of how this has impacted my life. I was a vibrant person who loved to work & play hard. I had never worked less, and usually worked more than 56 hours a week. I loved to entertain, had a very large social network, and had several hobbies. I worked as a registered nurse. Although this syndrome is not projected to be progressive, I can ?t say that is necessarily true. Initially one experiences periods of overwhelming fatigue, to the point where you may have to nap in your car to gain the energy to lift your body out of it when you have reached your destination after a 5 minute ride. Different joints ache & become immobilized, and you are diagnosed with bursitis and/or tendonitis. As this continues to affect different joints, you are given the diagnosis of Fibromyalgia. Stiffness descends on your person. Attempts at ambulation are as if you are walking through quicksand. Your face stiffens so that your emotions can ?t be seen. You scream out in pain during your sleep, disturbing the sleep of your spouse. Sleep. At times you lay there all night, never reaching it until morning. This may go on for several days/weeks, until "the sleep" sets in. You can do nothing but sleep during these periods. It ?s as if you are receiving anesthesia. Your eyes keep closing, and your limbs won ?t move. Your skin color is gray from pain and sleep disturbance, and your eyes have blackened pools under them. It ?s quite attractive. After reading this article, I am encouraged that some physicians feel that this is just something that I can "manage to get through life with some vicissitudes, but we adapt". Now that I have this knowledge, perhaps I can return to my precious life that I have been grieving for. It would be commendable if more professionals accepted this attitude, and ceased trying to improve the quality of life in the inferior humans that simply can ?t adapt to life ?s vicissitudes, wouldn ?t it? After all, many illnesses that were previously believed to be psychosomatic, or even psychiatric, now have treatments or even near cures, but this one? Poor adapters should not be accepted in our society. Should they? Maybe prisons would help to decrease the burden of our already burdened medical system. I ?ll pack my bags now. I beg forgiveness for sounding angry. I have lost my life. It is very hurtful to hear the lack of compassion from people that allegedly dedicated their lives to helping others. Spreading such ignorance by publishing it in your media is not something that should make you proud. Denise Healey Worcester, MA
Hi, My name is Jeanette and I suffer with Fibromyalgia, among some other illness ?s, and to the fellow who says it isn ?t real, I pray to God that you get it, and that way all your doubts will fade. That is the only way you will know it is real. Jeanette
No comments:
Post a Comment