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 curefor 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!!
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 afibromyalgia 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
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
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
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