The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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ME/CFS Fitbit Community

Discussion in 'General ME/CFS Discussion' started by sparklehoof, Jul 2, 2017.

  1. Hey ya'll,

    Would anyone be interested in starting an ME/CFS Fitbit Community with me on the Fitbit app/site? (I don't know how to do this, but I'm willing to find out)

    I'm struggling with exercise and want to find others that have a Fitbit who are at a similar level. On the MEA Disability Rating Scale, over the last 18 years I roughly fall into the 70%-90% DISABLED range with some differences.

    I have never been able to maintain a steady or graded exercise regimen.
    My best: Usually once or twice per month, on a good hour of a good day, I can walk for 10 min. on a treadmill, lift light weights for 10 min. w/ rest breaks.
    My worst: Laying in bed in the dark, with earplugs, with flulike symptoms+ other symptoms too sick to watch a movie or tv show, read, play solitaire or listen to a podcast. Breathing feels like a sport.

    The advantages of a Fitbit community for us:
    1.) Use our Fitbits so that we don't have to exert energy manually recording our exercise
    2.) If our goals are below the lowest pre-set Fitbit goals, we can share them with one another instead of feeling alone and unsuccessful.
    3.) Because our day to day health changes, if we're all at about the same level of fitness, we'll be reminded that we're not alone if some days we only reach 25 steps.
    4.) We can support one another in ways to stay strong mentally.

    Who's with me?

  2. I'm back and I've just formed a Fitbit group of 1, called
    ME/CFS Moderate to Severe Yet Still Kickin'!
    Anyone else down?
    MEMum likes this.
  3. tudiemoore

    tudiemoore Senior Member

    Southeast U.S.
    I would be interested but first I have to learn to use my Fitbit!

    Also, definition of exercise? The word, as it seems most often to be used, makes me shudder!
    I don't dare go an aerobics class, go for a walk longer than 10 minutes, get on my rebounder, think of riding my bike off to the races!
    Tried a Zumba class. Instructor said, "Just do as much as you can!" But I couldn't do anything--left breathless, wondering if I would make it to the car. Crossed Zumba off the list...

    I am currently wanting to try stretching, simple yoga, such as learning to relax and breathe properly, and/or some of the "Bedtop" programs and activities.

    I need encouragement for follow-through with any project or program but believe in the value of "The Group" for support and encouragement.
    Ok, here we go!
  4. happy


    I am using Fitbit in entirely different way: to watch that I don't do too many steps per day. It works better this way, at least for me.

    I would be Moderate to Mild on MEA scale.
    I work at computer for 6 hours per day, BUT to be able to do it, I don't cook or do any housework except light dish washing, I don't shop, I don't walk more than is necessary, I don't have visitors, I mostly just lie on weekends. My daily steps are capped at 3800 on my device (FitBit measures a bit more, maybe 4500 steps).

    Here's the important bit:
    The only reason I am able to work is because I don't go over 3800 steps per day. If I do, within a week I won't be able to focus and brain fog will return. It seems that brain fog is the earliest symptom for me that tells me I screwed up. If I don't listen to it, my physical ability suffers next and I end up with flu-like aches, dizziness, even small exertion gets my heart racing etc.

    Your situation is different, of course. But are you sure it's a good idea to use FitBit to more, not less?
  5. soti

    soti Senior Member

    Happy, I'm quite similar! And I use a fitbit. Would gladly join a group.
  6. tudiemoore

    tudiemoore Senior Member

    Southeast U.S.
    Thank you for the idea! I guess I have been such a non-exerciser for so long that I I haven't thought about variations of "no pain, no gain". And the Fitbit is an entirely new creature!

    Actually, I think I gave that no-pain thing too lightly--I just want to start doing something along the lines of using my body more.

    I have had too many wipe-outs, extending myself physically, especially the last year and a half or so to not have fear of this.

    Feeling a bit better so I pushed--you know how that goes--and along with "but you don't look sick").

    Thanks again--

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