View Poll Results: Would you like a CFS Forum on Brain Talk?

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  • Yes, CFS patients neeed their own Forum.

    6 100.00%
  • No, CFS patients can hang out elsewhere.

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Thread: POLL re: CFS Forum on BT?

  1. #1
    Distinguished Community Member Beader's Avatar
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    Question POLL re: CFS Forum on BT?

    Hi BTers!

    I'm creating a poll to find out if people would like to see a CFS forum here on Brain Talk. CFS stands for Chronic Fatigue Syndrome and is also known as ME, Myalgic Encephalomyelitis, as well as CFIDS, Chronic Fatigue Immune Dysfunction Syndrome. Yes, you'll get all three in the same neat package with bows on it!

    CFS is often confused with Fibromyalgia, but the CDC says they are different syndromes. Since no one actually knows the cause of either one, and there exist no definitive tests for either one, it's anyone's guess as to whether they are actually different diseases or not. There are numerous examples of CFS occurring after an infectitious disease outbreak, but I've never heard that to be true of FMS. CFS diagnosis does not involve trigger/tender points, while FMS does.

    The best-known symptom of ME/CFS is fatigue. However, the fatigue of ME/CFS is nothing like the fatigue most people experience at the end of a long day or following a strenuous workout. The Centers for Disease Control (CDC) describes the fatigue of ME/CFS as “severe, incapacitating, and all-encompassing.” In fact, the fatigue people with ME/CFS experience is so severe that it significantly limits their ability to work, go to school, participate in social activities and take care of their own personal needs. The most severe cases can leave patients housebound or bedridden.

    A key component of ME/CFS fatigue is post-exertional malaise. This is extreme, prolonged exhaustion and a worsening of symptoms following physical or mental exertion. The symptom exacerbation usually begins 12 to 48 hours after the exertion and requires an extended period of recovery. Other fatigue characteristics ME/CFS patients describe include feeling like they have the flu all the time, a feeling of heaviness in their limbs, and low energy levels accompanied by a feeling of over-stimulation.

    Another defining factor of the fatigue of ME/CFS is that it is not relieved by sleep. Patients may awaken feeling just as fatigued as they did before they went to sleep. Because getting good, deep, refreshing sleep is essential for the body to replenish itself, healthcare professionals will often address sleep issues first. If sleep problems can be corrected, fatigue symptoms should begin to improve as well.

    Last but not least, would you be in favor of there being a specific CFS Forum here on Brain Talk?
    Please answer with your vote. Thanks.
    Last edited by Beader; 02-09-2012 at 02:50 PM.
    Sher
    My Life Menu: CFS probably since birth, full flavored since the 80s, with Fibromyalgia, Major Depression with a side order of Anxiety and Agoraphobia sauce, Restless Leg Syndrome with spicy Other Sleep Disorders, 11 Eye Surgeries, a generous helping of Gut Problems

  2. #2
    Community Member Deedeelyn's Avatar
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    In my recovery from CFS, I have found the most difficult to live with is the malaise follow the mental exertion. First I suffer from insomnia for a couple nights trying to deal with my mental issues then it takes days to start to feel rested. I will feel flu-ish if the exertion is prolonged.

    Thanks for all the info Sher.

    Dee

  3. #3
    Distinguished Community Member Beader's Avatar
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    You're very welcome, Dee.

    I think my malaise is more post-exertional -- after physical activity, unless I'm already exhausted, and then the brain goes quickly, too. It's really difficult to know when you're about to do too much, hard to tell when the yellow light is blinking before it turns red. One subtle thing I've noticed is that when my throat just begins to get sore as I'm doing too much, when I want to reach for a hard candy or a cough drop, that is when I should STOP completely or I will pay.

    I take a long list of meds for RLS and sleep disorder, but I still have trouble turning my brain off. I started doing Sudoku puzzles about a year ago, and it may sound weird, but if I do them right before bedtime, I drop off quicker. I think they must engage the other hemisphere, the non-emotional one, because the puzzles involve logic to solve them. So when I'm dropping my pen and book, I turn out the lights and crash into the pillow, overnight lip gloss or not.
    Sher
    My Life Menu: CFS probably since birth, full flavored since the 80s, with Fibromyalgia, Major Depression with a side order of Anxiety and Agoraphobia sauce, Restless Leg Syndrome with spicy Other Sleep Disorders, 11 Eye Surgeries, a generous helping of Gut Problems

  4. #4
    Community Member Deedeelyn's Avatar
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    Oh yes, the dreaded sore throat,, a sure sign you've over done it. I've never had such bad cases of sore throats with clean cultures. Just blazing sore. Have you found any remedies for any possible recurance?

    Dee

  5. #5
    Distinguished Community Member houghchrst's Avatar
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    Okay I don't have CFS but I think that if people need the group then it should exist. I'm an equal opportunity forum....er? ian? whatever lol

  6. #6
    Distinguished Community Member Beader's Avatar
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    I heard one nationally recognized CFS expert postulate that the "clean" sore throats might be due to tiny islands of lymph tissue in the throat which can become inflamed just like the lymph nodes. I take it as a warning sign that a flare is coming on. When the flare is in full swing, my throat is constantly sore. I assume it's part of the auto-immune war being waged in the body.

    For a brief while, the docs were excited that they might have found a physical symptom for CFS that was easy to check. If you look way into the back of your mouth behind your last molars, sometimes you can find a small red area on both sides next to to your throat opening. They called it "Cuna's Crescents" [sp?] after the doc who noticed them. The problem is that redness there turned out to not be exclusive to CFS, but was found in other patients as well. However, when my throat is bad and I'm wondering if it's just sinus problems, I'll get out my tiny fllash light and check for the crescents. If they are red, it's likely CFS, at least for me.
    Sher
    My Life Menu: CFS probably since birth, full flavored since the 80s, with Fibromyalgia, Major Depression with a side order of Anxiety and Agoraphobia sauce, Restless Leg Syndrome with spicy Other Sleep Disorders, 11 Eye Surgeries, a generous helping of Gut Problems

  7. #7

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    I've just recently returned to Braintalk after many years, and I was hoping to find that Brian Talk had a forum for ME/CFS, especially given the new report this year in the US. But unless I am blind (which can always be a possibility) I don't see one. Given that CFS is such a poor name and it has been recognized internationally under the name of Myalgic Encephalopathy/Encephalomylitis for MANY decades now, I was sure there would be section devoted to it here. :(

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