Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Pain and difficulty walking: freaking out a bit!

Discussion in 'General Symptoms' started by nettle_tea, Sep 11, 2017.

  1. nettle_tea

    nettle_tea

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    I'm new here. I'm still in the process of getting a diagnosis, but my condition is deteriorating rapidly in the meantime and I don't know what to do.

    I've been having flare-ups of muscle pain, extreme sensitivity to sensation, stiffness, and weakness - mostly in my legs - that are causing difficulty walking. When the first one happened, my doctor sent me for an urgent rheumatology appointment, but the exam and subsequent blood tests didn't show anything unusual. The doctors said it was probably ME/CFS and/or fibromyalgia and sent me home with an EMG order for several weeks out. In a few days I regained function, though I was much weaker. I've been careful not to overexert myself since then, but just getting to work every day seems to be beyond my limits. I'm in the middle of another pain flare. I'm stuck on my second floor apartment and I'm using a cane to get around.

    Is this typical for ME or fibro? Most of my other symptoms (extreme fatigue, PEM, orthostatic intolerance, heat intolerance, persistent aches and pains) are typical ME symptoms. I've had episodes of muscle pain and stiffness with PEM and weather changes before, but never this severe. I think it's the pain itself that's causing difficulty walking, but I'm not sure.
     
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  2. lansbergen

    lansbergen Senior Member

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    I still have legweakness during flares.
     
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  3. Wonko

    Wonko Senior Member

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    The other side.
    In my experience it's perfectly normal for M.E. - nothing to panic about, so relax, and just work around it as you're able, by which I mean resting until it stops, then continuing with whatever you were doing - if this is possible.

    Not being able to walk properly may be your body's subtle way of telling you to slow down a bit.

    It does tend to be worse when overdoing things, it's rare that happens to me these days but by a "funny" coincidence......
     
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  4. nettle_tea

    nettle_tea

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    This is comforting, and I think you are right. I just emailed my union representative about implementing a part-time schedule at work. I've been scared to do this, but I need more than two rest days a week. I should probably drop to 3 days a week for a while, then try to go back up to 4 (what I need to pay my rent!) when I feel better. The full time schedule is definitely not working, though.
     
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  5. Wonko

    Wonko Senior Member

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    The other side.
    If not too far gone then I used to be able to decrease most of the "noise" with 20-60 minutes total rest lying down, you must be totally comfortable, semi-meditative state if you know what I mean. Worked wonders, most of the time, if it was possible, which most of the time it wasn't.

    Beyond a certain point tho it can take a while, days, weeks even, to recover to baseline.

    Physically, and mentally, it's one of my least troubling symptoms from M.E. but I suspect that's because I learned long ago not to let it build or it can make life seriously miserable.

    Most of the pain, and some of the weakness, stiffness, general unpleasantness, etc are simply aspects of the "noise", if you can diminish that then a lot of the rest drop off, or at least in my case that's what happens. Of course it works the other way as well :(
     
    Last edited: Sep 11, 2017
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  6. Eastman

    Eastman Senior Member

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    @nettle_tea

    Your symptoms do look a bit like vitamin B1 deficiency. I assume at some point in time, your doctor must have tested for it and ruled it out.

    Still, the typical blood test is said to frequently miss picking up a deficiency and the transketolase activity and TPP effect tests are recommended but not always available.
     
    pattismith likes this.

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