Viral infections & the shakes!

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Hey all!!

I was diagnosed a month or two ago now with ME/CFS. All I do is sleep or rest yet still feel tired although the last week or so I had kind of felt like I had a bit more energy in me both physically and mentally.

Anyway, I've noticed, more so at night/when I'm going going to sleep, that my whole body tenses up!! I suddenly become aware of it so relax but before I know it I'm tensing up again!! I also keep getting random twitches, does anyone else get this and know why??

One more thing, my little girl and partner have very kindly passed on their cold to me and it has knocked me for six! I feel like I've took a massive ten steps backwards sad I'm falling asleep sitting up its hit me that bad. Will we (suffers of ME/CFS) always feel things ten times worse than others and take longer to get over it??

Thank you in advance for any help/info/experiences shared 😊 Xx

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7 Replies

  • Posted

    Hi Emily,

    I too get the random twitching yes. I'm not sure what causes it but, I know it can be quite annoying. I did too much yesterday so today I'm in bed and my legs kept having massive jolts earlier. Also in one arm. Seem to have calmed down now. I find the randomness of the symptoms can be hard to fathom.

    Re: will it always be 10 times worse-I think that's random too! When I get ill now, it sometimes feels worse but, I often feel ill like I'm coming down with a cold/flu then it goes away and I realize that it was just part of the condition. Its hard to tell for me if its taken longer to get over illness? I guess I feel awful so much of the time that maybe I hadn't put it down to being ill and recovery time. On the plus, I've spoken to two people this week one who recovered and the another person told me of a relative who had recovered from cfs/me. The first after two years, the other after four years so I live In hope : )

    I hope they're both looking after you today and that you're feeling better soon x

    B

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    • Posted

      Beverley that's great that you've met people that have got over this....gives us all hope I'm sure!! I feel terrible today and have since Wednesday. The strange thing is, on Wednesday I felt 'normal' for the first time since being diagnosed. I'm thinking maybe I over done it on Wednesday and this is my payback sad I feel like I have the flu. I hope you're feeling better soon xxx
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    • Posted

      Hi Emily,

      I think yes, you may have over done it Or you may have caught something from your husband or daughter or even both. Rest is the key whatever the cause right now. Like Jackie' post says, take It easy and pace yourself. I know its easier said than done! Have as much time out as you can right now even if it is an illness you have, don't rush back Into things when you're feeling better.

      Myself, I've stayed In bed apart from to eat etc and am still here. Some days that's what I have to do and today its not been too bad doing that.

      Be gentle with yourself and hope you're feeling better soon too x

      B

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  • Posted

    yes, Emily, muscle twitches are a common symptoms of ME/CFS. sometimes, it can be due to low levels of Magnesium which is also common in ME/CFS sufferers.

    yes again, in respect of colds/flues. they do tend to hit us like a ton of bricks. i'm in the middle of one such bout at the  moment. 

    hope you can rest through the acute phase. 

    C

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    • Posted

      I'll try and nip to Boots tomorrow if I can find the energy and see about some more supplements which will hopefully help with my twitches smile.

      I hope you're feeling better soon smile xxx

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  • Posted

    Since I got ME/CFS 16 years ago, I've gotten flus, colds etc. way less than I used to. I've read that our immune system can actually be "up-regulated." By the way, if you felt a bit more energy during the last week or so, that's a very good sign. Try to build on that by taking it real easy, pacing yourself, and not trying to push through the fatigue. A typical thing that happens is that we feel better so start immediately doing more, then crash as a result. You want to avoid this push/crash cycle so you can give yourself a chance to really get better.
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    • Posted

      Jackie it's crazy because I actually felt normal on Wednesday then BOOM I feel like I'm back to square one with this illness sad. I will definitely be taking your advice on the pacing. I keep hearing about pacing so really need to reserch and put it into practice xxx
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