I struggled from the time I was very young with fatigue and fibrofog. God bless my Mother who made me go to bed at a decent hour & had me take ballet, my Father who believed if you could walk somewhere you should and my friend Kay who had me join the swim team where we lifted weights. I had some pain in my shins growing up and after college when I no longer was a competitive distance swimmer I had tightness in my shoulders. That has , praise God, been the extent of my pain. Fatigue? That's another story. I started having problems staying awake enough to do work as soon as my menses started in Junior High. I started falling asleep during the day in High School. I earned a BA (Chemistry, 1983) and an MA (Exercise Physiology, 1989) only because after sleeping fitfully all night (I had one good week of the month, 2 bad and one absolutely horrendous) I could sleep in the library. I thought it was 'PMS', that I was lazy and stupid. I thought the problem was that I didn't have enough mental discipline. Then, in 1990, I joined the Army. So much for sleeping during the day. However, praise God in 1992 a doctor who actually KEPT UP with the research in his field said to me "Well, we may have a diagnosis here. The good news is you aren't dying." My mental response? "I didn't think I was! It was August 1992. The syndrome was still called 'Fibrositis.' It wasn't for 6 more months that it officially came to be called Fibromyalgia. He put me on amitryptyline. I was 150 pounds. He didn't tell me it could cause weight gain. I gained 15 pounds over the next 3 months. I thought it was because I had bad eating habits. However, for the first time in years? I actually slept at night all month long! Amazing! I praise God for the doctors who believe this isn't "all in my head" and the drug companies that are willing to spend years and millions of dollars on developing medications. (I know this because I spent time at DuPont and know about the years of trials medications go through before they reach the public. Some which could potentially help people never do because the side affects are too bad or some other reason and so ALL that money is for naught.) Because those of us with fibromyalgia? Sometimes no matter WHAT we do? We never reach DEEP sleep, our bodies can't properly repair themselves we have constant pain and our brain is in a perpetual fog. So, Mr. Berenson, here are my words to you : I want you to go to bed tonight and set an alarm that wakes you up about everyhour and a half. Do that for the next month and see if YOU feel no pain, have no mental fatigue. Why don't YOU try it for awhile Mr. Berenson? Get back to me. After that month? You will have a much greater understanding and find out that fibromyalgia IS "very real." Sincerely, Tania L. Moore, MA Chemist, Exercise Physiologist
This article starts out with a very true statement, 'Fibromyalgia is a real disease'. To the millions of us that suffer from this disease this is wonderful that this had made the front page of one of the largest papers in the US. The trouble comes when 2 different doctors who do not understand and because this disease is so different with each patient and has no cure want nothing to do with it. The damage these quotes do is make family members, friends and employers say even more harmful things and verify their own non belief that this is not a real debilitating disease that we have no control over unless we have an understanding, caring and up to date doctor who works with each individual to find what works best for them to gain control over their lives again. At this point we are unable to return to the lives we knew before fibromyalgia hit us but we can have a fulfilling live with less pain. That is in part due to the drug companies like Pfizer who are finding things to help us such as Lyrica. The research continues on a daily basis to find the causes and a cure for this horrible pain filled disease. This is what should be reported about and praised not the thoughts of neanderthal antiquated doctors. There are millions of people , not just middle aged women, that suffer daily from this disease. People who can longer work and support their families, children who can not get out of bed for school because they are in so much pain. To say this is all in their heads is so demeaning and cruel. I for one would love to be able to have the doctors who were quoted in this article and any others with the same beliefs as these feel my pain for just one day and then look me in the eye and say it is all in my head. I can guarantee you they would not be able to do it. I thank God everyday that I have a wonderful doctor who listens to me and works with me to get this pain under control, but I know I am one of the lucky ones. Fibromyalgia is one of the leading diseases causing insurance rates and disability rate to sky rocket, but yet it is supposedly all in our heads. Think about how that can be then. It can't because it is real and it is dibilatating and it is costing millions of dollars a year. So I for one say thank you to Pfizer and the other drug companies and researchers for their commitment to finding the causes and hopefully a cure for this disease. S. J. McKee
I invite the doctors and others who choose to belittle the millions of us who suffer endlessly with chronic pain and related problems, to live in my body for just one week. It would definitely change his tune! Finally, drug companies and others are doing what they can to help Fibromyalgia sufferers , and then this! I am devastated! In my opinion, these doctors are doing the same thing as most rheumatologists. They can ?t cure us and the drugs available only help slightly, so they don ?t want to be bothered by patients with "imaginary" symptoms. I understand why this is so, how awful to feel so powerless when so many suffer like I do. However, the New York Times should really check their sources before printing an article that will definitely have a terrible impact on people with Fibromyalgia. This reminds me of "tabloid" writing! I pray that this letter will do a bit toward correcting this blasphemy. Regards, Linda Edwards Raleigh, NC
Regarding Alex Berenson's article dated 1/14/08, Drug Approval: Is Disease Real? I suggest sending him, his family, and loved ones to Iraq (NO ENTRY ALLOWED IN THE GREEN ZONE) to increase the likelihood of getting CFIDS, which is recognized by the Center for Disease Control. Maybe then he will sing a different tune and if he comes to Fibromyalgia Centers for treatment, deny him (tell him it is in his head, scans are all normal) for at least 3 years for he must suffer for these comments. Alex could be associated or paid by the Insurance conglomerates for his mouthpiece. This would be nothing new in America, rather the norm, saddened to say. So Alex, I hope you get FMS/CFIDS quickly!!! Cheers, Anita Thompson
I don't know how long I've had fibro, but I was diagnosed in Jan. 2000. It is very discouraging for people to say this disease does not exist and that it is all in my head. I am not on Lyrica and try not to take any opiates. I lost my job in Jan/2000 because I no longer had the energy to work. The only other medical problem I have is Carpal Tunnel. Yes, I was overweight and while trying numerous medications I gained an additional 50 pounds. Thanks to a wonder Dr and team of Physical Therapists and Psychologists I was able to lose 100 pounds 5 years ago without surgery, or medication and I have kept off 95% of the weight. Everyone says how wonderful it is not to work. I have a Handicap Card that I have to use more often than I want. I very rarely travel, but if I do I have to ask for pre-boarding. When people greet me they want to come up and hug me, and I have to step back, because a hug hurts. Thanks to the weight loss I'm down to a size 10, but I have to wear size 20 Caftans, because I can't stand clothes touching me. I'm always cold which is driving my friends nuts, because they are going through menopause. My joints always hurt and sometimes I can't raise a cup of coffee to my mouth. I used to be a very intelligent women that memorized manuals and was always available with the answers. I try not to be in discussions today because of Fibro Fog and I sound like an idiot. This is not all in my head. I would gladly return to work. I'm sick of the looks people give me when I get these additional (?benefits?) , because I've learned how to put on makeup and did I mention I have to go the beauty shop twice a week to get my hair washed and blown out because I don't have the energy to blow it dry nor can I keep my arms up long enough. My disease is real, and the name assigned to this monstrosity is Fibromyalgia. Maybe today there isn't a blood test or x-ray to verify I have a disease. It isn't recognized because you can't see it like MS or Cancer. It's not Life Threatening, but it is a Life Sentence to pain. Yes these Drug Companies are coming out with drugs that they feel may "help" the pain, but it isn't finding the source. I'm sorry to say that until someone popular like Michael ?, with Parkinson's disease has Fibro, enough money will not be spent on Fibromyalgia research. If these Dr's. don't believe in Fibromyalgia, try living with a spouse or child that has it, or talk to another Dr that has, you will change your mind. Barb Elman
To whom it may concern; Fibromyalgia is very, very real. Believe me! I am a 59 yr. old grandmother who, in my earlier years, had the stamina to attend to my house, my husband, my children, & to gentle, train & ride horses. All without missing a beat. And, I'm not stupid. I graduated from High School at the age of 17 yrs., going on to earn a degree in Commercial Art alongside the late, great Norman Rockwell before marrying my first husband. Always athletic. Would swim, hike, camp,herd cattle from the back of a good horse..............& more! Then, about 20 yrs. ago I started HURTING. And, I felt PAIN all over me....most of the time! I thot I had the flu. I didn't. I'll leave alot of boring story out & just say I was FINALLY diagnosed with Fibromyalgia, Chronic Fatigue, hypertension & arthritis. I went from having perfect vision to cataracts & seeing flashes of light in both of my eyes. Mostly, I see out of eyes that don't focus & looks like they're coverd in wax paper. Now, I use a magnifying glass to see decently. I no longer ride my horses because I'm too tired & there's too much pain. I miss it so much I cry....alot! I feel I have been robbed of my LIFE as I once knew it. I usually don't have the energy to be a decent wife to my husband. I can't keep my home as clean as I'd like. Some nites I do not sleep.....which just makes my condition worse. It effects my hearing, my sense of touch. My hands & feet go numb,alot & there's no control over this. It comes & goes like it isn't even part of me. I can't pick things up. A glass of water can & will fly right out of my hand! I have been known to stop watches & start computers just by walking close to them. I have migraine headaches! I forget where I live or what I was saying. Or, a friends name. But, you say it's all in my head?????? Well, IF it is.....I don't want it anymore. YOU TAKE IT FOR AWHILE & SEE WHAT IT'S LIKE. Try it. You won't like it. It ruins your life. I have a friend with Fibromyalgia who is,now, in a wheel chair & sucking oxygen day & nite!!! Another friend has Fibro. & it morphed into M.S.!!! Yes! It did!!! Another friend has BOTH FIbromyalgia & Lupus. Try living with THAT for awhile?!!!!! Just try it!!! And, I could go on & on....but, I won't. My time is precious & limited & I have a husband & 2 dogs & 2 horses who love &, so far-so good, NEED ME! You, dear sir, can go fly a kite!!!! You don't know what you're talking about. Thank you for your time. Dusty Williams Columbia Cross Roads, Pa.
I have had fibromyalgia for over 25 years. I had been having muscle tenderness and pain and was finding myself getting so exhausted, I would start getting weak and then could only lay on the floor and could not even lift my arms to make a phone call. My children had to fend for themselves when they got home from school. I finally got a Dr. to listen to me and he ordered gallbladder tests. I had the gallbladder removed and could not get my strength back, and had pretty severe pain and more severe fatique. My own Dr. would not listen to me when I told him I was so weak. I finally, after fighting with him, got him to take a hypoglycemia test. He called immediately, and put me on a diet, as my blood sugar had gone down to 36 during the test. After that the fatique was not as severe, but the tendernesss and pain continued. I had been to many DR's and told me that there was nothing they could find to be causing my symptoms. A friend told me the Arthritis Assoc. had a brochure that described the fibromyalgia, that she had gotten from her Dr., as she had some of the same conditions, i.e., the tenderness and pain. I went to a rheumatologist, because of the tenderness and pain in so many areas of my body. The pain was not severe, but did affect my life as I was unable to do many things that I had done before. I was diagnosed with fibromyalgia, and was told is was a secondary condition to another physical condition and then told it was from stress and would go away in a few months. It was suggested that I should go back to my Dr. have more blood work done -- to rule out any other conditions. I decided if it was stress, I would go to a psychiatrist and find an answer for it. After two meetings with him, he indicated there was nothing mentally wrong with me to cause this condition. But to help with stress, if it was causing the problems, he recommended I go to a biofeedback psychologist, which I did. It did not help my condition, and finally the physcologist recommended I get to a DR as there was a medical condition causing my symptoms. He recommended his own internist, A Dr. John Harsany, I went to him and he took the tests suggested, and then diagnosed me with Lupus, as the underlying problem. My greatest symptom beside the tenderness and pain was fatique ( I call it exhaustion ) I lost so many days from weakness, that my quality of life was changed. I also have IBS, which gets progressively worse. Since then it has been debated by other DR's whether I have Lupus or Just Fibro. My nuero-opthamologist found damage to the optic nerve, and indicated it was caused from Lupus. This was also debated by different DR's, but found to be the case. Then I found I had degenerative disk disease also. A disk was pressing on my spinal cord and Ihad to have surgery to keep from being paralyzed. That was three years ago. It took over two years to get relief from that pain. Gentle pool therapy and physical therapy and massage helped a lot. My internist, Dr. John Harsanyhas been treating me for many years. He gets frustrated because drugs do not work for me. My symptoms continue to spread and get worse. My prednisone for my lupus in my eyes, has now caused diabetes. Something, has started to affect my kidneys -- pain and bladder pain. Dr. Harsany sent me to Loma Linda University, where I found a rheumatologist who does not dismiss my symptoms, acknowledges my fibromyalgia, debates the Lupus, and has now diagnosed me also with Osteoarthritis, and is checking for Rheumatoid arthritis. The arthritis symptoms could be from Lupus. Because most drugs do not help, I was sent to a pain specialist. She could do no more for me, as the drugs she gave me did not work. She sent me to a nuero physcologist. Now I thought, Here I am again being told there is nothing wrong with me, its all in my head. What a refreshing and encouraging visit I had with the nuero psychologist, Dr. Michael Gilweski at Loma Linda University. He was a Fibromyalgia specialist when he was working at Cedars Sinai Hospital. He has shown me that Fibromyalgia is a recognized condition -- and that it causes (IT IS) the stress all over the body, and has affected the kidneys, bladder, etc. He knows that drugs are not easily tolerated by fibro patients, and he will use new biofeedback training to help ease the pain. I have only had one visit with him so far. And I am looking forward to finding some relief for my pains, without the physically addictive drugs I have been on for so long. It is bad enough to suffer for so long from debilitating symptoms, and then be told basically "it's all in your head." That in itself gives you cause to wonder if it is worth it to continue to live. It gives people around you reason to doubt you and your problems. If I did not have a husband who has had to deal with my physical disabilities, and support me in my quest for an answer, I would have given up -- because of DR's who continue to say -- there is no reason for your miserable life. It's only when you find someone who understands, and believes, that gives you reason to hope for a more productive life without pain and fatique, and other physical ailments. We have come to a conclusion in our family, it is: ask a dozen different
Hi- I'm a 39 year old woman, mother of two, ages 10 and 7. I was diagnosed back in 2000 with Rheumatoid Arthritis. Later, in early 2007, discovering my pain was not RA, but Fibromyalgia. My new Doctor put me on Lyrica because it was the newest drug out there at that time. Now, I'm not one to take much medicine. I'm more of the belief that exercise and a positive attitude can win over the pain most days. I actively play tennis and suffer through it sometimes. It keeps me going because I love the sport of it and I feel its good for the soul/mind. I started the Lyrica in spite of my beliefs and found that the side effects of sleepiness was more than I could handle in the am with the kids. So I stopped even though I was feeling less pain. So....time passed and I stayed active and went through my days faking it with the smile, as all Fibro people do. Then I had a stressful situation happen and my body gave in. I could not walk for days. Started back on the Lyrica and have been 80% better. I have not gained ANY weight, which I believe is because I stay fit and see the benefits of exercise with Fibro. I have issue with Alex Berenson, someone who clearly does not live with the pain and the difficulties that come with the diagnose of Fibro. or any other debilitating pain. Not everyone takes the diagnose as a "medical condition" and falls into a depression with it. Its very assuming of the writer to put us all into that category. Until you walk in the shoes, don't judge!. Of course the drug companies are going to make a ton of money. They are in the business to!!. They are also in the business to help people in need. People who are waiting for new meds to help them feel like they use to, as they remember. Mr. Berenson should be ashamed in himself in trying to limit the growth of help with Fibromyalgia. Just because someone has access to a paint brush and canvas does not mean they should color the world with untrue ugliness. Hopefully the world will choose to ignore his opinion to the disease he clearly does not understand. Lyrica IS helpful and that is what should be told. Stacey A. Chicago IL
To Whom It May Concern, Yes, I was very upset by the comments concerning the article in the New York Times by Dr. Wolfe and other MDs that Fibromyalgia is not a disease. As an eight year survivor of Fibromyalgia I can defiitely tell you this disease exists as I have lived it painfully every day. I am buoyed by the fact that Fibromyalgia patients, although weak mentally, physically and emotionally, we are strong in number and we will not let these naysayers push us around. I personally feel I am proud, that even though there have been some physicians who have just said my pain was all in my head, I kept knocking on doors until I found medical treatment and will continue to do so in the future. So Dr. Wolfe can write an article and then recant it all he wants, I will perserve over him and all the other physicians who try to keep me from treatments to treat my Fibromyalgia. Sincerely, Heather Gomez
This article is a big joke. I have fibromyalgia. It greatly impacts my life. It is a REAL disease. I often wish that people without fibromyalgia, would have to live in my body. Many of them wouldn't last a week. They would understand what I face each day. I have learned to live with the pain. It is usually unbearable and never goes away, but my life continues. I would not want to be a patient of those doctors who do not believe that fibromyalgia exists. I have news for them--It is REAL!!!! I am greatful to the doctors who believe fibromyalgia exits. Shame on the newspaper for printing this article!!! You need to interview one of the many doctors who are researching fibromyalgia. Ms. Tammy J. Schalesky Minot, ND
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