Stages of post-exertional malaise



  • This may not be the case for everyone (I imagine it depends on your severity) but for me there is a definite progression of PEM from "eh, I've probably overdone it but I can still function" to "feel like I'm dying".

    I've tried to describe the stages that lead from point A to point B for me. I think it would be interesting to compare notes.
    These days, I spend a lot of time in stage 1 and 2. The last time I was in stage 4 was nearly two years ago - thank goodness. I was in stage 4 most of the time when I first got sick, before I knew what was wrong with me.

    Of course this is more of a sliding scale rather than discrete bullet points. There are stages in between the 4 I've written down, and the severity of my symptoms within each stage can vary. But these are the major milestones I've identified.

    1. Fatigue and brain fog develop after mild exertion but symptoms are temporary and resolve eventually with sufficient bed rest, hydration, sugar, etc or improve on their own in the evening. Legs may be shaky. Sleep quality is poor and sleep onset is delayed. Over several days/weeks, continued exertion leads to worsening sleep quality, increased duration of symptoms and greater difficulty in recovering from them ("rolling PEM"). Limits exertion to short periods at a time, with frequent rest.
    2. Wake up feeling ok at first, but fatigue and brain fog develops shortly after waking, and cannot be shaken off though food and drink may temporarily relieve it. Cognitive exertion or stress leads to nausea, dizziness, headache, elevated heart rate. Aggressive rest (e. g. sensory deprivation) improves symptoms only slightly, or not at all. Prevents doing cognitive tasks, socialising.
    3. Exhausted immediately on waking up, with persistent nauseating headache and "poisoned" feeling which can last for several days uninterrupted. No amount of rest makes a difference to symptoms. Resting heart rate is elevated; insomnia is severe. There may be increased appetite and thirst, sweating and feeling hot. Recovery requires complete bed rest for days or weeks. Prevents doing most tasks.
    4. Neurological symptoms ramp up - body feels heavy, leaden; movement is difficult and may feel like wading through mud, or "laggy"; extreme drowsiness may lead to unscheduled daytime naps, slowed heart rate and breathing; there are sensory disturbances such as vertigo, nerve pain or numbness, light and sound sensitivity; other signs of autonomic dysregulation may be present. In contrast to stage 3, appetite is likely to be suppressed and temperature low. Attempting any kind of exertion may cause fainting or near-fainting. Prevents doing any tasks.



  • I relate to the stages of PEM. I know it’s going to be a really bad day, symptom wise when I wake up with what I call a weak feeling in my chest. It is really hard to describe, but it feels like my whole chest region is weak and that usually correlates with severe crash days. I feel it the instant I wake up.



  • @Loulou I get a similar weakness feeling but I feel it more in stomach/abdomen and legs. It's very hard to describe. Sort of like all the blood has drained out my vital organs



  • @river said in Stages of post-exertional malaise:

    This may not be the case for everyone (I imagine it depends on your severity) but for me there is a definite progression of PEM from "eh, I've probably overdone it but I can still function" to "feel like I'm dying".

    I've tried to describe the stages that lead from point A to point B for me. I think it would be interesting to compare notes.
    These days, I spend a lot of time in stage 1 and 2. The last time I was in stage 4 was nearly two years ago - thank goodness. I was in stage 4 most of the time when I first got sick, before I knew what was wrong with me.

    Of course this is more of a sliding scale rather than discrete bullet points. There are stages in between the 4 I've written down, and the severity of my symptoms within each stage can vary. But these are the major milestones I've identified.

    1. Fatigue and brain fog develop after mild exertion but symptoms are temporary and resolve eventually with sufficient bed rest, hydration, sugar, etc or improve on their own in the evening. Legs may be shaky. Sleep quality is poor and sleep onset is delayed. Over several days/weeks, continued exertion leads to worsening sleep quality, increased duration of symptoms and greater difficulty in recovering from them ("rolling PEM"). Limits exertion to short periods at a time, with frequent rest.
    2. Wake up feeling ok at first, but fatigue and brain fog develops shortly after waking, and cannot be shaken off though food and drink may temporarily relieve it. Cognitive exertion or stress leads to nausea, dizziness, headache, elevated heart rate. Aggressive rest (e. g. sensory deprivation) improves symptoms only slightly, or not at all. Prevents doing cognitive tasks, socialising.
    3. Exhausted immediately on waking up, with persistent nauseating headache and "poisoned" feeling which can last for several days uninterrupted. No amount of rest makes a difference to symptoms. Resting heart rate is elevated; insomnia is severe. There may be increased appetite and thirst, sweating and feeling hot. Recovery requires complete bed rest for days or weeks. Prevents doing most tasks.
    4. Neurological symptoms ramp up - body feels heavy, leaden; movement is difficult and may feel like wading through mud, or "laggy"; extreme drowsiness may lead to unscheduled daytime naps, slowed heart rate and breathing; there are sensory disturbances such as vertigo, nerve pain or numbness, light and sound sensitivity; other signs of autonomic dysregulation may be present. In contrast to stage 3, appetite is likely to be suppressed and temperature low. Attempting any kind of exertion may cause fainting or near-fainting. Prevents doing any tasks.

    @river you have done a very good job at describing stages... I relate also.
    I often say it feel like my cells are dying.... it is insane that awful feeling when you just cannot do no matter how hard you try....


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