Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
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Malaise

Discussion in 'General Symptoms' started by confetti11, Apr 13, 2017.

  1. confetti11

    confetti11 Senior Member

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    Not much new to say. I just wanted to say that I hate this symptom. Does it happen the same for you?

    No specific rhyme or reason. My stomach won't hurt that badly. There might be a hint of a headache. I'm not really that overly tired. But my shoulders ache like I need a massage, and I just feel uneasy. Best way I can describe it.

    I explain to my friends that it feels as though I'm on the edge of sick. Like I could feel nauseous at any second but don't actually do at that very second. I also describe it as not feeling awful but just not feeling good. I describe the absence of this, and all other really annoying symptoms, as feeling "clear" or "light". I haven't felt that way for a while. Some evenings I get a glimpse of it. I feel best after the sun goes down when I'm like this.

    Can anyone relate to this?!!

    (Obviously, it's how I feel today.)
     
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  2. halcyon

    halcyon Senior Member

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    Yup. What you described is the core of the disease, in my opinion.
     
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  3. Dechi

    Dechi Senior Member

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    Yes, I feel that way most of the time. If not I am even worse.
     
  4. Skippa

    Skippa Anti-BS

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    Yes yep yeppity yessss

    Every day I "think I'm coming down with something, maybe it's that bug?"

    For 15+ years!
     
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  5. hellytheelephant

    hellytheelephant Senior Member

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    Totally agree with @halcyon - to me this is far more distinctive in ME than fatigue. Yes, I have no energy but that is the same for many neurological conditions. I always tell people that I feel like I have flu.
     
  6. confetti11

    confetti11 Senior Member

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    @halcyon
    @Dechi
    @Skippa
    @hellytheelephant

    Thanks for giving me your thoughts! It's just the weirdest symptom. Out of the blue sometimes, I can feel just really uneasy. It's unlike any symptom I can describe to anyone who hasn't experienced it before.
     
  7. Snow Leopard

    Snow Leopard Hibernating

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    Severe headache, hard to concentrate, painful and tight muscles etc.
     
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  8. hellytheelephant

    hellytheelephant Senior Member

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    @confetti11 - I am trying a new approach to the sudden onset of malaise- these days I think it is a useful signal for me to reevaluate what I doing/planning to do mentally or physically. It's good to have those 'signals' that you get clear in your mind. Another of mine is that my top lip goes very pale.

    That uneasy feeling freaks me out then I remember: 'Oh this an ME symptom!' then I try to do as much as I can to calm the nervous system- drink tonnes of superstrong chamomile tea, burn loads of lavender oil etc...
     
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  9. ukxmrv

    ukxmrv Senior Member

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    For me it's a feeling of always having the flu or coming down with the flu. I don't feel unease but physically unwell - like the flu. I have a sore throat, swollen glands etc.

    POTS can sometimes feel like maybe what you are describing maybe? Have you taken your blood pressure when it happens?
     
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  10. Wishful

    Wishful Senior Member

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    I agree with the 'feels like a flu coming on' feeling: a general not-feeling-well. It was hard to realize just how severe that was until I got a sudden remission (I had occasional brief remissions at the start), and then I felt like bouncing like a Tigger over how wonderful being healthy again felt.
     
  11. Webdog

    Webdog Senior Member

    The immune symptoms are usually my best guide to malaise severity. Trying to judge my brain fog or fatigue is less accurate.

    Sore throat and feeling like I have the flu are good indicators. Generally, a sore throat is my first indicator of post exertional malaise onset.

    Also, the quantity, color and thickness of any mucus I cough up in the morning predicts fairly well how my day will be. From least to most severe: clear, clear thick (jelly-like), whitish, yellowish, orangish. (today it's whitish with some yellow + mildly sore throat, so I canceled my planned outing)

    The tender or swollen lymph nodes mostly went away after disease year 23, but they used to be my best malaise indicator. Persistent facial and mouth sores (lasting weeks) went away a couple years later. I only get these symptoms today when my malaise is severe (or I actually caught a bug). Like many, my immune symptoms changed significantly during my mid-30's. I'm now in my mid-50s.

    ETA: An immune symptom warning I forgot to mention is cold sores. Until I started Valtrex, these were pretty good predictors that neuro symptoms would worsen. Generally, the cold sores would not fully erupt into surface lesions, but often they did, especially when I was younger. Since starting Valtrex, cold sores are rare and never erupt.
     
    Last edited: Apr 18, 2017
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  12. confetti11

    confetti11 Senior Member

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    Unfortunately it happens all day long sometimes, and I tend to have high blood pressure...
     

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