Patients Talk Back, Volume 4

Second Protest Letter 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

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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

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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 Osteoarthritus 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 alot 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 Osteoarthritus 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 unfortunatly 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 tha n 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 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

I know now that Fibro is real. I was finally told by my doctor what I have be 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 natrual 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 thobbing 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 aking asprin. 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 NYTimes. 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)

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.