Posted by TENA/ DIAMOND on 1/2/2009, 4:29 pm, in reply to "Re: Letter to NY Times #7"
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. Ill 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 ************ ********* ********* ********* ********* ********* ********* ***** 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 every hour 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 ************ ********* *********
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