Discussion in 'Fibromyalgia Main Forum' started by kjfms, Mar 8, 2006.

  1. kjfms

    kjfms Member

    I hope it is ok to post this. Please print and mail to your local governments.


    Your name
    Your address

    Addresse name


    As a resident of ______________ (city/county), ______________ (state/country), I am writing to inform you that May 12th is International Fibromyalgia Awareness Day and is quickly approaching. Fibromyalgia (FM) is a chronic and debilitating pain condition that affects men, women, and children of all ages and ethic backgrounds worldwide. The number of people who suffer from this disease is now estimated at 10 million in the US alone. As a patient with FM, every day I live with a variety of symptoms, such as:

    unrelenting fatigue and an inability to achieve restful, restorative sleep
    severe pain that often doesn't respond to traditional treatments
    problems with cognitive functioning, memory and concentration that limit my ability to think clearly
    a variety of other symptoms, including: irritable bowel, headaches and migraines, and neurological symptoms such as dizziness, vision problems, numbness, noise sensitivity, and impaired coordination
    Currently the cause of FM is still unknown and there is no cure. Existing treatments are limited, and severe symptoms can interfere with even basic daily activities. The toll that this illness takes on families, as well as the national economy, is enormous. Dr. Daniel Wallace of Cedars-Sinai Medical Center in Los Angeles estimates that fibromyalgia costs society over $9 billion dollars a year in medical visits, disability and loss of productivity.

    Many doctors are inadequately educated about this mysterious and complex disease, and it takes an average of five years for a person to get a diagnosis of FM. If a cause and cure are to be found, more vigorous attention from government and medical communities is essential. I ask that you please support legislation that will increase the amount and quality of FM research by our national public health agencies. The Social Security Administration also must recognize this illness and the level of debilitation that often results. The barriers to disability benefits that exist for individuals with FM are devastating, and we need your help to ensure that those afflicted with FM get the help and support they so desperately need.

    For more information on fibromyalgia, I invite you to contact the National Fibromyalgia Association by phone at (714) 921-0150 or by e-mail at, or visit NFA online at Please help us increase awareness of FM by recognizing May 12th as International FM Awareness Day, and by doing whatever you can to make sure that this year marks the beginning of a new era of thorough medical investigation into FM.


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  2. NyroFan

    NyroFan New Member

    This would also make a good e-mail. I will send a few out and see what happens. Whenever I have written a government official I have always gotten a response.
  3. kjfms

    kjfms Member

    ...what a great idea. Thank you so much.


  4. kjfms

    kjfms Member

    Thank you so much for the kind words. I am not trying to be anything special. I just found the information and wanted to share.

    I am just going to send some emails, letters, and probably put a letter in my local newspaper.

    I was diagnosed in 1999 or 98 (I get it mixed up sometimes) LOL... It took me about 5 years or so to find out what was wrong and that is just too long for anyone.

    I never say it much but I do remember how it was going from physician to physician trying to find out what was wrong with me, missing so much work that I lost my job and a list of other things that most of us have been through.

    This board and the people here have made me stop and remember how awful that was and how alone I felt (still do at times...LOL).

    All of my friends know I have FMS and for the most part understand (some of it), I am so lucky on that. It saddens me when I see posts here about friends not understanding.

    I am just looking for ways to help in my own little way it is not very much-I live in a very small town. I was just think if everyone does just a few things it may help-you never know and in the end we can at least say we tried.

    Thank you again for the kind words-I am very greatful.

    Take care,

  5. kjfms

    kjfms Member

    ...things have settled down a little in my life and I am going to try to do my part.


  6. UnicornK

    UnicornK New Member

    the snail mail addys and email addys of the representatives for each state? You know, for us fibrofogies. LOL


    God Bless.
  7. UnicornK

    UnicornK New Member

    I didn't know. I appreciate you telling me. I'll check out the site.

    God Bless.
  8. UnicornK

    UnicornK New Member

    my congressman, Steny Hoyer, in Maryland. I copied the sample letter and did a little editing to make it "mine". (Hope no one minds.) If I hear anything, I'll let you know.

    God Bless.
  9. kjfms

    kjfms Member

    ...for doing this.

    I just wanted to let you all know I have emailed mine. I will let you all know if I get any responses.

    If you Google "email addresses state reps" you will get site that give you the email addresses you need.

    Thanks a bunch,

  10. Fibrolady37

    Fibrolady37 New Member

    well done good on u girl thats a gr8 idea i want to do as much as i can to help raise awareness about fms.
    I am more restricted this year than i hav eva bin my rheumatism is crippling me nothing eases it.
    The last couple of months ive gone rapidly downhill & my right wrist is crippling me thats my writing hand unfortunately.
    We need to get as many people as possible to do this if we all do it we will get a massive response which is what we need.
    There are 2 many people who are suffering who dont get believed by doctors,consultants & many other so called professionals.
    We have to fight to get what we need & we shouldnt hav to do that its not fair & its very stressful.
    We can & wil make a difference.
  11. sherri_baby

    sherri_baby New Member

    I just wanted to let you all know I also sent this to my Rep. David Day in Missouri.

    God Bless,

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