What time of day do you feel worse/better?

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I wonder how others feel, and whether the time of day makes a difference.

I nearly always find mornings very very hard. Sometimes, quite randomly -feel okay in the mornings! Think "hey! I'm feeling better!" But then will go downhill later in the day. But mostly I can't do mornings any more. I shake and tremble and feel sick.

I have learned to not be afraid of it and not dismayed by it now. It usually passes in a few hours. If I can't eat breakfast, I leave half of it and eat it later.

The only bad thing is I don't want to go to sleep -even though I sleep well -because of what it feels like to wake up.

Do you all have any particular time of day that it's harder to manage?

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  • Posted

    Hi sylvia13942, I'm sorry that your mornings start out so rough. I wish I had advice on how to make your mornings better, I'm in the same boat as you. I find that the morning's are rough too and things tend to get better as the day goes, until the night comes, then things get rough again. The mornings and the nights are the worst for me. I sure miss the days when we use to wake up feeling good! Hopefully a cure will be found soon! Sometimes though, I find that meditation helps, other times music and dancing can help. Does the weather affect how you feel too? It does for me. Much rain or snow seems to make things worse too. Sunny days can help, as long as it isn't too hot! Good luck and take care, my prayers are with you for you to feel well <3 

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  • Posted

    For me, mornings are slow...takes me ages to wake up - I can be conscious but still unable to do anything at all (even open my eyes, often) for another hour or more. And then I feel like Mr Stupid for another hour or more until my brain wakes up a bit. I often look at my ipad at this time and catch up with facebook/internet stuff for half an hour - that seems to help me wake up. Any longer than that though I can feel my brain get foggy again.

    I can feel awake and with a little energy by 10am...but then feel knackered after taking a shower. Often feel more awake in the late afternoons/evenings too. My wife has learned to do her own thing early in the morning (she's an early bird and has often got a few things done before I can even get up).

    Best way to deal with it though is just to try and accept it and do what you can, when you can. Which it sounds like you're already doing. It may well change for you, going forward of course.

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  • Posted

    i often wonder if its because our immune system is on sleep mode as all our organs are when we sleep. Therefore the retroviruses have a hayday. Like when i was younger, i always seemed to begin an illness when i woke up in morning. Or got sick in the middle of the night. Who knows. Are you positive for any viral exposures? Did your Mecfs start with an illness?
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    • Posted

      The doctor did check my bloodwork thoroughly for any signs of infections of any kind. He told me that., and he couldn't find any. The blood panel was also good generally for everything.

      But he didn't do a  nose swab. I don't know if at that stage it would have showed if I had a flu virus or not. I was almost 4 weeks into it before I went to the doc.

      We also ruled out carbon monoxide or any other obvious poisoning. I had no lymph nodes up or sore throat, or any ordinary flu symptoms.

      Just that classic awful "flu" feeling and the nausea, pains round eye, weariness, terrible restlessness, weakness and shaking and heart palpitations. (My heart was checked and nothing unusual found. Blood pressure too which was normal.)

      I don't fit any profile I've read of for EBV, mononucleosis, even Lyme, cytomegalovirus, or any other virus. The symptoms don't fit with anything, plus I never had anything approaching a fever. Usually my temperature was low, and the blood results & other health checks were clean.

      But I did hear of two people living not far from me who had the same initial symptoms, and it was a virus (didn't say what, but they called it "flu".) I heard that when I was about the 4th-5th week. With both of those women their symptoms lasted a few weeks, with it seeming to go away, then come back several times.

      People were saying "oh you've probably got about 4 weeks with this nasty bug".

      When I started to feel improved, thought I was getting better. But now it's week 10. And I've always had a good immune system and been strong and healthy.

      Now what I feel is not as bad as what I had in the beginning. But same set of symptoms. no new ones. Maybe about 30% what it was at first.  I don't get that distinctive "flu" feeling any more.

      There are good days when I feel so much better....before I get hit with it again maybe two days later. Never as bad as it was at first.

      The hard thing is it never goes away and has made me so weary and unable to be what I was before March 27.

      So I'm guessing it was a virus. The doctor also said he guessed it was. Sadly he came down sick himself just a few days after I saw him. I hope I didn't give it to him.

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  • Posted

    Dear Sheryl, bless you and thanks for your prayer. I say a prayer also for your healing. And for everyone on here. The neditation....that is a beautiful idea but I feel so rough I couldn't do that in the morning. I do my own kind of Heart-felt meditation when I feel I can. I couldn't dance in the morning either! lol....but I did try it once. Just to be defiant. Nope -for me not the right time of day. But I do listen to nice music and that helps cheer me up.

    Ialso have to go out to feed  neighbour's cat pretty soon, so have to try to snap out of it in a couple of hours. (My "snapping" is done as gently as possible with the help of a banana and some lovely music.)

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