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Is it typical in CFS for symptoms to change by the hour, and even by the minute?

Discussion in 'General Symptoms' started by livingwithcfids, Sep 10, 2011.

  1. livingwithcfids


    One minute I will be feeling somewhat normal with a good amount of energy and then all of a sudden a "wave" comes over me, and I feel sick all over. I am just not sure what to think of this.
    Any ideas are much appreciated.
    rosie26 likes this.
  2. AndrewB

    AndrewB Senior Member

    England, UK
    hi, have you been diagnosed ?

  3. livingwithcfids


    Andrew, after a good 6 months of investigation from numerous doctors, I ended up with Fibromyalgia & CFS. I just find it strange how frequently my symptoms change.

    Sickofcfs: that is very interesting. How did you find that out? Did you buy on of those household blood pressure monitors and test periodically that way? So she made a recovery!?
  4. Kina


    Sofa, UK
    Many illnesses have ebbs and flows. I have personally been involved with ill people who feel "not sick" one day to "real sick" on another day. I have my good days and bad days. My advice, embrace your feeling normal days with relish, accept your sick days with quiet resignation and hope for another normal day. Remember, you are not defined by your illness, you define your illness.
  5. Sparrow

    Sparrow Senior Member

    I would say that things most definitely change from week to week, day to day, and hour to hour in my experience. I have noticed some trends, though, and have been able to prevent some of my own waves by figuring out what has caused them.

    From month to month, my groups of symptoms are really different sometimes.
    From week to week, usually I've been either doing too much or resting more, depending on whether I'm having a change for the worse or better.
    From day to day, my overall feeling is often related to how much I did that day, the day before, and how frequently I'm eating and drinking.

    The hour to hour stuff I have found in my experience was triggered by something specific, often something I ate. It took me forever to pin down different reactions, because different foods would give me different kinds of increased symptoms and I didn't realize just how many different things I was reacting poorly to. In particular for me, fruits and some sugars give me a weird wave of badness a couple of hours after, even in small quantities. I thought I just always had a wave of worse symptoms around 3pm. Nope. It was the 1pm banana. :)

    Do you find that your bad waves tend to come around the same times in the day? If so, you might want to look at your meal routine and change things around for a while to see if you can find a connection. Might not be the trigger, but it can't hurt. There are other things that have triggered those kinds of worsenings for me as well (activity, certain kinds of movement, heat, etc.).

    So I think it is very normal for this illness, in my experience, but I also firmly believe now that those waves are caused by something and if we can puzzle out what's behind them, we can prevent a lot of that kind of reaction. Best of luck!
  6. maddietod

    maddietod Senior Member

    East Coast, USA
    I had experiences like Sparrow's. I now keep a diary all through the day recording sleep pattern, everything I eat and drink, physical ups and downs, my activities, and supplements/meds. I write it all through the day, so a 3:00 reaction to a regular 1:00 banana would be obvious after a few days.

    It's also useful because sometimes I get an idea..........gee, I wonder if I started that supplement a few days before this new symptom..........and I can go back and find out. My memory is hopeless!

    Good luck with this.


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