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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Symptom Interpretation While Finding Limits

Discussion in 'General ME/CFS Discussion' started by jleblanc3, Nov 3, 2017.

  1. jleblanc3

    jleblanc3

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    I am recently ill and recently diagnosed (5months).

    Myself and my family have done a lot of reading and are aware of the concept and advantages of pacing to improve symptom severity and lifestyle improvement. I have acceptance that progress is possible with small incremental changes over a long period of time.

    Where I feel challenged is the interpretation of the mildness/severity of certain symptoms.

    For example, if going outside to check on a bird feeder results in mild/moderate myalgias in my legs and arms that pass with approximately 10 to 20 mins of rest, am I to intepret that activity as outside of my limit or within a health range of progress? If I were to participate in a meditation, which I do 2-3 times per day, I will usually get a very mild sensation through my body/arms with a slight increase in muscle pains. I am not sure if that is a slight PEM related to the activities prior to meditation. These sensations last for 2-3 seconds and disspiate quickly. After my meditation I seem to be okay to continue daily activities (which are very limited). Once I complete another activity the myalgias will return with the same intensity. It is these physical symptoms and their onset/length that I don't know how to interpret: are they, and should they be avoided?

    Another question regarding interpretation of symptoms: I have had 2 weeks where I was symptom free, both cognitively and physically. I had two different doctors' appointments back to back, in which we discussed heavy topics. That weekend I felt the effects of those social interactions which have left more lingering symptoms for just over a week. Is this what is referred to as a "crash"? The lingering syptoms aren't severe, but certainly I am more quick to have muscle pains, headaches and my sleep as been a bit more disprrupted (than usual).

    I would appreciate some help interpreting these experiences. As I am keen to establish my energy envelope, it is hard to really know if the mildness of some of these symptoms is ok and part of the slow progress or if I am going outside of my limits/envelope.
     
  2. Offset Entity

    Offset Entity

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    Hey @jleblanc3 sorry to hear about your illness, when you say diagnosed do you mean with ME/CFS?
    Ive had CFS among other things for my whole adult life and i reassess and redefine what my limits are based on how im doing at that point in time. assuming you have CFS Your limits will change based on recovery and decline. for most of us with CFS over doing it will cause symptoms to worsen and eventually will lead to a crash. its all about balance and knowing when to push and when to rest. you need to listen to your body and be patient.

    the term crash can mean slightly different things to different people. at its core its feeling worse after overdoing it. personally i have varying degrees of crashes some with recovery of a couple days some a few months or even a year.

    your story about the doctors sounds like a mild crash to me.
    for most people the more they ignore their symptoms and the harder they push/fight it the longer and harder they will crash

    What you wrote about the sensations during meditation/after activity i either didn't fully understand or dont experience. something similar i do get is when im active i get a kind of adrenaline thing and dont feel as much pain or hunger as i did when resting. then when i calm my body/mind i feel worse but after resting i feel better.


    In my experience the best way to increase energy levels and tolerance of activities is to do small pushes then recover over and over. big pushes set me back a lot. Keeping your body healthy as a whole will also help/ (think eating healthy, reducing stress, identifying vitamin deficiencies, things like that.)

    what i do
    rest before AND after "pushing"
    before pushing I prepare an easy day or 2 for afterward.
    avoid pushing for things that are not important to me.
    take vitamins for deficiencies/ methlyation issues
    use medication as needed to make crashes more comfortable.
    Refrain from/limit unhealthy foods

    One thing that really helped me alot was getting the proper vitamins. i took a genetic test that found i can only make use of about 30% of both the B6 and B12 that i eat. i started taking the methylated versions of those vitamins and it has made a big improvement.

    I feel its important for me to push my limits occasionally so i know exactly where they are. i now have a really good feel of where i am energy wise and when im pushing it to much. I am constantly "self monitoring" to make sure im not feeling worn out etc.

    I hope some of that helps,
    Best wishes

    -Offset
     
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