How to explain the 'fatigue' of ME/CFS to non-sufferers - comparisons they could understand

Hutan said:
I've also likened the fatigue specifically to being similar to trying to do work at a high altitude. Everything is more difficult - moving, thinking - and so is done more slowly and effortfully.
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This is an interesting analogy, especially if mitochondrial dysfunction is involved. At altitude, mitochondria presumably make less energy due to a lower concentration of oxygen. In mitochondrial dysfunction, however, they can't make enough energy despite the presence of sufficient oxygen - but the effects might be similar.

At altitude, the body will start producing more red blood cells to compensate for the low oxygen. This doesn't happen in ME, but the signal to do so may not be low energy production, but rather a more direct detection of low oxygen concentration in the blood.

Anyway, the symptoms of mild to moderate acute mountain sickness include:
  • Difficulty sleeping
  • Dizziness or light-headedness
  • Fatigue
  • Headache
  • Loss of appetite
  • Nausea or vomiting
  • Rapid pulse (heart rate)
  • Shortness of breath with exertion
 
I've still yet to read all post in this thread.

Exhaustion is more how I would describe it rather than fatigue. It's not a normal fatigue it's an illness/disease kind of exhaustion. At each level of ME it will fluctuate depending on how much I can do before worsening symptoms. Naturally severe and very severe ME is the worst.

I would liken the exhaustion to a very bad chest infection and you are puffing from just walking a little way but the ME exhaustion is even worse and felt all over and has many more symptoms with it.

I'm sometimes reminded of my experience before ME where I worked two jobs and I would find I could only do it for about six months before I began to get run down and would get cold after cold. ME reminds me of the same kind of nature where we can only do some much before triggering symptoms - with ME, in the severe years just holding a book would worsen my symptoms - so it does remind me in this way how there is a limit set. With ME that limit can be set very low. Of course ME is much more extreme than the example of working two jobs and getting cold but it does remind me of that kind of pathway to illness.
 
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lansbergen said:
One strange thing I noticed. When I rested in a flare, just lying down on the sofa. Suddenly the overwelming fatique started and very fast spread to surrounding tissue.
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I was looking through my GP notes a couple of days ago (I have the file). It wasn't pleasant reading reliving my severe year visits. All the symptoms that were recorded, some were left out because there were too many to mention.

I noticed my doctor had written Myasthenia Gravis and had drawn a line all around it. At one stage of severe I felt absolutely crushed and the weakness was severe. I had mentioned I had hardly the strength to breathe and couldn't sustain pressure when using my hands.
 
Rosie said:
@Milo I don't know. I would think it must have been. Is Myasthenia Gravis an illness that you always have once you get it or is it a symptom of an illness. I should have looked this up.
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I am not too sure, to be honest, as i do not have much experience with MG, but from what i understand you have it for life. What i do know for sure is that magnesium worsens the condition.

MG would be a differential diagnosis to ME.
 
Milo said:
I am not too sure, to be honest, as i do not have much experience with MG, but from what i understand you have it for life. What i do know for sure is that magnesium worsens the condition.

MG would be a differential diagnosis to ME.
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I will check it out, but for me it was like a symptom that I had for a time. Thanks Milo.
 
Milo said:
What symptoms are you talking about Rosie, Magnesium intolerance?
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The crushing weakness, feeling like I didn't have the strength to breathe and not being able to sustain pressure when using my hands.

I was experiencing many other ME symptoms as well. The above were just a few symptoms.
 
Rosie said:
The crushing weakness, feeling like I didn't have the strength to breathe and not being able to sustain pressure when using my hands.

I was experiencing many other ME symptoms as well. The above were just a few symptoms.
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Maybe you should return to your doctor and find out whether you indeed have MG, because there are some treatments for that.
 
Rosie said:
Is Myasthenia Gravis an illness that you always have once you get it or is it a symptom of an illness
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It’s an autoimmune illness. Symptoms can flare and settle but the illness is permanent. My father had it.

It’s worth getting it ruled out as there is some overlap in symptoms with ME/CFS. my guess though is the doctor just thought of it as a possibility when you mentioned breathing weakness.
 
SallyC said:
I totally agree, just being exhausted 'normally' is more like a desperate desire to be able to sleep, anywhere and anyhow and can be an almost comfortable feeling. I once fell asleep in a large walk-in dog kennel when on night call at vet school because the bedding was comfy and heated. I have never had that sort of feeling with this illness. It's always thoroughly unpleasant and sleep (when possible) is more an aid to shutting it down temporarily.

I haven't worded this very well but I hope you get my meaning.
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Yes! THIS and when you wake up you actually feel worse
 
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