Comments on: Letter to the AP, from the President of the National Fibromyalgia Association http://www.fibrohaven.com/2009/02/13/letter-to-the-ap-from-the-president-of-the-national-fibromyalgia-association/ Living a Life of Essence in Spite of Illness Thu, 09 Feb 2012 08:25:03 +0000 hourly 1 http://wordpress.org/?v=3.3.1 By: Lynne Matallana and The National Fibromyalgia Association « Fibromyalgia Haven http://www.fibrohaven.com/2009/02/13/letter-to-the-ap-from-the-president-of-the-national-fibromyalgia-association/comment-page-1/#comment-238 Lynne Matallana and The National Fibromyalgia Association « Fibromyalgia Haven Tue, 11 Aug 2009 19:45:24 +0000 http://fibrohaven.wordpress.com/?p=748#comment-238 [...] Association, research, resources, support by fibrohaven If you are not already familiar with Lynne Matallana and The National Fibromyalgia Association, you should become so. Lynne founded the NFA in 1997, and [...] [...] Association, research, resources, support by fibrohaven If you are not already familiar with Lynne Matallana and The National Fibromyalgia Association, you should become so. Lynne founded the NFA in 1997, and [...]

]]> By: Current Psychiatry “Gets” Fibromyalgia « Fibromyalgia Haven http://www.fibrohaven.com/2009/02/13/letter-to-the-ap-from-the-president-of-the-national-fibromyalgia-association/comment-page-1/#comment-237 Current Psychiatry “Gets” Fibromyalgia « Fibromyalgia Haven Mon, 13 Apr 2009 22:17:05 +0000 http://fibrohaven.wordpress.com/?p=748#comment-237 [...] is nothing “murky” about Dr. Stanford’s approach to Fibromyalgia. I appreciate that her approach is to treat the [...] [...] is nothing “murky” about Dr. Stanford’s approach to Fibromyalgia. I appreciate that her approach is to treat the [...]

]]> By: Yvonne Schwegel http://www.fibrohaven.com/2009/02/13/letter-to-the-ap-from-the-president-of-the-national-fibromyalgia-association/comment-page-1/#comment-236 Yvonne Schwegel Sat, 14 Feb 2009 16:41:06 +0000 http://fibrohaven.wordpress.com/?p=748#comment-236 Thanks Lynne Matallana for your informative letter regarding the erroneous and stinging AP story. I am embarrassed to speak out to anyone other than a few close family and friends about having fibromyalgia, because of the stigma that just doesn't seem to go away about this disorder. The statement, that fibromyalgia sufferers are “more likely to have a history of mental illness and are economically disadvantaged?” is so ignorant of the writer. I look like a picture of health most of the time, which can be deceiving to others, I know. I don't like talking about it, but it's true that it is a life altering disease. There are many times I avoid hugs because of the pain of someone touching my body. When a child runs up and grabs my legs, as children often do, it's all I can do to keep from letting out a scream from the pain. I am so very tired most of the time, yet when it comes time to sleep, sleep just won't come. Oh yes, these are just a few of the life altering painful situations. I'm sure one day there will be an explanation as to why, what causes it, and how it can successfully be treated. Then the rest of the population will have another view. Until then, we have to teach those who are ignorant, be patient because they know not what pain their words and mockery cause fibromyalgia sufferers. Thanks Lynne Matallana for your informative letter regarding the erroneous and stinging AP story. I am embarrassed to speak out to anyone other than a few close family and friends about having fibromyalgia, because of the stigma that just doesn’t seem to go away about this disorder. The statement, that fibromyalgia sufferers are “more likely to have a history of mental illness and are economically disadvantaged?” is so ignorant of the writer.

I look like a picture of health most of the time, which can be deceiving to others, I know. I don’t like talking about it, but it’s true that it is a life altering disease. There are many times I avoid hugs because of the pain of someone touching my body. When a child runs up and grabs my legs, as children often do, it’s all I can do to keep from letting out a scream from the pain. I am so very tired most of the time, yet when it comes time to sleep, sleep just won’t come. Oh yes, these are just a few of the life altering painful situations. I’m sure one day there will be an explanation as to why, what causes it, and how it can successfully be treated. Then the rest of the population will have another view. Until then, we have to teach those who are ignorant, be patient because they know not what pain their words and mockery cause fibromyalgia sufferers.

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