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Profound, debilitating fatigue found to be a major issue for autoimmune disease patients in new national survey

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Press Release: American Autoimmune Related Diseases Association (AARDA), March 23, 2015. Fatigue described as "profound," "debilitating," and "preventing them from doing the simplest everyday tasks," is a major issue for autoimmune disease (AD) patients, impacting nearly every aspect of their lives. It affects their mental and emotional well-being and their ability to work. And while most AD patients have discussed their fatigue with their physicians, many have not been prescribed treatment for their fatigue.
Those are among the major findings of a new online survey of autoimmune disease patients conducted by the American Autoimmune Disease Related Diseases Association (AARDA), the nation's only not-for-profit autoimmune disease patient advocacy organization, to examine the connection between autoimmune disease and fatigue. AARDA released the findings of the survey of 7,838 AD patients at a national summit held to commemorate National Autoimmune Disease Awareness Month at the National Press Club in Washington, D.C.
Major findings include:

  • Almost all (98 percent) AD patients surveyed report they suffer from fatigue.

  • Nine-in-10 (89 percent) say it is a "major issue" for them and six-in-10 (59 percent) say it is "probably the most debilitating symptom of having an AD."

  • More than two-thirds (68 percent) say their "fatigue is anything but normal. It is profound and prevents [them] from doing the simplest everyday tasks."

  • While nearly nine-in-10 (87 percent) report they have discussed their fatigue with their doctor, six-in 10 (59 percent) say they have not been prescribed or suggested treatment by their doctors.

  • Seven-in-10 (70 percent) believe others judge them negatively because of their fatigue.

  • Three-quarters (75 percent) say their fatigue has impacted their ability to work; nearly four-in-10 (37 percent) say they are in financial distress because of it; one-in-five (21 percent) say it has caused them to lose their jobs; while the same number (21 percent) report they have filed for disability as a result of their fatigue.

  • Fatigue impacts nearly every aspect of AD patients' lives including overall quality of life (89 percent), career/ability to work (78 percent), romantic (78 percent), family (74 percent) and professional relationships (65 percent) and their self esteem (69 percent), among others.

"In this busy, busy world, it's normal to be tired, but the kind of fatigue autoimmune disease patients suffer from is anything but normal," said Virginia T. Ladd, President and Executive Director of AARDA.
"The overwhelming response AARDA received to this survey shows without a shadow of doubt that fatigue is not a 'fuzzy' symptom, it's real. Yet, for too long, it has been ignored and/or misunderstood by the medical community and the public at large. It's time we bring more research funding to this issue to advance understanding and effective treatments for fatigue."
The survey revealed that fatigue has a significant impact on AD patients' mental and emotional well-being. They say it has resulted in increased emotional distress (88 percent), a sense of isolation (76 percent), anxiety (72 percent) and depression (69 percent).
According to one AD patient, "It's difficult for other people to understand our ongoing fatigue when it can't be seen by them. It's so hard just trying to get others to really, really understand how very tired you are sometimes — even our own doctors don't understand. One wonders if even our doctors may think we are for the most part just mental cases and/or whiners."

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2 thoughts on “Profound, debilitating fatigue found to be a major issue for autoimmune disease patients in new national survey”

  1. Fabmann says:

    Since being diagnosed with EF I absolutely agree with this article. Although depression is not a significant issue with me, the stress of taking 3-4 times to do a simple task that I could have done before is seriously affecting me as a Father. I find it incredibly hard to present an image of normalcy when my whole body is a walking talking scar. My immediate family gets it somewhat but continuously having to explain why everything is so much harder makes me look like a freeloader and less than who I should be.

    People give me dirty looks when I use the handicapped space, not understanding that after traversing about three blocks it’s all I can do to sit back in my car and drive home. The muscle spasms alone are non-stop and there is no cure. Just physical rehab to try and regain functionality of my hands, feet, legs and arms. When sitting in a booth trying to eat a meal in a restaurant and the muscles in the torso start to spasm it’s all that I can do to excuse myself and find somewhere quiet while not inconveniencing others while trying to mediate the pain and stop the cramps.

    I am now 100% disabled and trying to use the skills I have and re invent myself into someone I never saw myself as… It’s a long, hard road. I remind myself constantly that eternal vigilance is the only answer to where I currently stand.

  2. toen says:

    I had these symptoms for 11 years. After getting nowhere with traditional medicine, I went the holistic route and was back to my old self within 2 years. My book tells my personal journey, which is woven between chapters written by 9 professionals who helped me get to the other side of the illness. The title of the book is “Musician, Heal Thyself! An Alternative Approach to Conquering Chronic Fatigue Syndrome” by Annette Toenjes. It’s available on Amazon and Barnes and Noble. I hope it will help you.

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