ME/CFS and Feeling Worse After Resting 2

Last September I wrote a post about how I often feel worse after resting. I also decided to do a little poll about it and I thought it was about time I commented on the results.
I asked the question ‘Do you often feel worse after resting?
5 respondents (20%) replied ‘No’
10 (41%) chose ‘Yes, even before I get up’
2 (8%) chose ‘Yes, only once I stand up’
7 (29%) chose ‘Both before I get up and then worse on standing’
I offered these 4 options because I believe that there might be two illness mechanisms involved here. Many people with ME/CFS also seem to have Postural Tachycardia Syndrome (POTS) which could account for people feeling worse once they stand up. I’m not a sufferer myself so I don’t know a huge amount about it but one of my favourite bloggers, Sue Jackson has written a few posts about it. However I also believe there is something else going on here and the results would suggest that that might be the case for 70% of my respondents.
My theory is that rest can sometimes slow our circulatory systems down to a level that they don’t work effectively. This is most likely to happen for people with low blood pressure, or whose mitochondrial difficulties affect the strength of their heart muscles. Simply, we just don’t get enough fuel pumped around our bodies and waste products build up. Hence we feel rubbish after a rest or when we first wake up in the morning.  It would be wonderful if we could get some research done about this phenomena but my main interest is how it informs self-help.
I have discovered that I feel better once I move around gently (and after I have rehydrated in the morning). My theory is that this movement (and rehydration) gets my circulatory systems working at a level that better supports my functioning. More fuel gets brought to my cells and more toxins get dealt with. It’s counterintuitive to ‘get up and go’ when you feel that bad and it’s very difficult to find the motivation. But I now know from experience that I’m likely to feel better so I follow my  5 minute rule. I make myself move around to give my circulation a better chance for 5 minutes and if I don’t feel better by then I allow myself to stop and rest again.

If resting makes you feel worse, does gentle movement improve things for you? Does rehydrating yourself in the morning help you feel more human when you wake up feeling awful? I’d love to hear more about your experiences and how you tackle feeling worse after resting.

1 thought on “ME/CFS and Feeling Worse After Resting 2”

  1. I am experiencing this at the moment. Every morning I wake up feeling awful, exactly as if I have a hangover, although I have not drunk alcohol for a long time now, and I wonder if there is some traction in your theory that there is a build up if toxins overnight. I have been making an effort to drink more water both during the night and on waking which seems to help a tiny bit. I am going to start drinking lemon water and also doing some light yoga stretches first thing to see if that has any impact.
    I yhink I remember reading a theory that liver function is sometimes impaired in ME sufferers and wonder if there is a link there too? Have you written about this in another post? I’m going to try & track down the article. Paula x


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