Hard-to-describe symptoms - we're not "just tired"

  • I started a thread in the private section of this forum about how ME/CFS is so much more than "feeling tired" yet many people continue to mistake it for simply "chronic fatigue". I had an idea that maybe we could all share the really weird, hard-to-explain symptoms we have that are NOT fatigue, to raise awareness of what this illness really is.

    What symptoms do you have that there are no words for, maybe ones that you can only explain using metaphor or analogy?

    Here are mine - many experienced recently as I've been in PEM since last week. I'm currently on meds that make me feel just giddy and dreamy rather than fatigued when I'm in PEM. But I still have all these other weird symptoms that are nothing to do with tiredness.

    🌏 Gravity feels wrong. I feel like I'm on a planet with a slightly higher gravity than earth. My whole body (but legs especially) feels marginally heavier than normal. It reminds me of waking up from an anaesthetic after 3 hour surgery when I was a child, how my arm felt unexpectedly heavy when I tried to lift it. I know this is technically muscle weakness but it doesn't feel like weakness to me. I have no trouble lifting my limbs, they just weigh more than I expect when I do lift them.

    🌑 Somehow at the same time I have this contradictory feeling of floating. Like I have an impaired sense of where my body is in space, almost a slight numbness, and my head feels detached from my body. When this gets bad enough I can't walk in a straight line and it feels like the floor is tilting, just like being on a boat. Have you ever been on a long plane trip and once you're back on solid ground, you keep feeling like the floor is moving for a few hours afterwards? It's like that. A few nights ago this happened to me when I was sitting in bed, not even moving around. I was cuddling with my partner and suddenly the whole room felt like it was pitching and swaying, even though the evidence of my eyes told me it wasn't. I had to lie very still and shut my eyes for a bit until it went away.

    🦾 Movement lag - just enough to be unsettling. My limbs might not feel any heavier than usual but when I try to move them there seems to be a discrepancy in what I expect to happen and what actually happens. This is one of the hardest feelings to describe! Maybe imagine a virtual reality game where your virtual limbs lag slightly behind your actual limbs?

    🧠 Brain full of dirty dishwater - I've described this on the forum before, but to recap, it's similar to the sick groggy feeling of being woken at the wrong point in your sleep cycle, or (returning to the anaesthetic analogy) waiting for a general anaesthetic to wear off after a long surgery, which is still the best comparison I can think of to my entire experience of ME/CFS.

    💀 My stomach feels dead. This is really hard to describe because it's not nausea, or pain, or bloating, or any of the usual kinds of gastric discomfort. It feels like having an inert, lifeless organ hanging out in my body, completely disconnected from all nerve signals or blood supply or something. Like a rejected transplant?? I don't know. But the idea of swallowing anything at all feels very very wrong. If the... deadness... lasted long enough, I imagine I would begin to rot on the inside. Luckily it (currently) waxes and wanes over the course of a day, enough that I can still eat and drink a bit and not rot.

  • @river It's quite an exercise to try to describe what I experience and feel. I do have the same sense and awareness that gravity is stronger and I sense the resistance as I move around. My head feels heavy and my brain hurts. It's not necessarily a headache but rather a weighty pressure; My face feels like it droops yet it is visually fine and I have an all over slight numbing feeling. My muscles seem to burn and not from exercise. It feels like there are tiny splits in the fibres. I experience focus issues - my eyes can't seem to really focus without the object shifting. I have dizziness most of the time that can change to severe vertigo and room spin. I am prone to random loss of the use of my arm or hand. It may only last a second or two: once it happened when I was draining a pot of hot pasta. I ended up with third degree burns- this momentary signal loss could be similar to the movement lag you describe. Sometimes the timing is out of sync. I have often just collapsed into a floppy state; slumped in an awkward position and just remaining that way no matter how uncomfortable I may be; I want to be able to move but my body but it just doesn't respond normally.
    I am always disappointed when I eat. My appetite has gone and I have to force myself to eat even though my stomach says no.
    I have lost pigment in my skin, randomly all over my body (vitiligo). My hands look bleached white and I have to cover up when outdoors as I burn quickly from any UV.
    I feel like my soul is trapped inside a decaying body.😕
    I often feel like my cells are dying and

  • @crashdummy oof I can relate to so much of that. In fact I did the "floppy collapse" just a few hours ago trying to get to the bathroom - had to lie on the floor for a bit waiting to get my strength back. I have to force myself to eat too. I used to love eating but the idea of eating for enjoymebt is such an alien concept to me now

  • We had a discussion about this in my Rural online support group and we all agreed to call fatigue post exertional malaise as more people understood this and were more accepting of this terminology.

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