Activity

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anyone any tips on how active should I be? When I wake up I feel sick and tired and if I stay in bed I feel like that the whole day and could lay in bed the whole day. However, if I start doing something I stop feeling tired after a bit, but I feel very hyped up. I can do a lot without feeling tired but after getting to rest and calming down(in the evening or after sleep) I feel the effects of the activity I did.

Should I just rest till my body doesnt feel like resting anymore, or do something? Before getting sick with this, I would just stay in bed when I felt this tired and wait till im healthy, but now It would mean doing basically nothing for weeks or months.

so no activity(resting till feeling ok)/minimal(trying to move a bit not to get completely deconditioned)/ mild(try to do some activities even when tired, but ensure there is a lot of rest)?

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  • Posted

    Hey Lob- I have exactly the same problem.

    I wake up feeling absolutely awful. And I force myself to get up and move around and then it goes away slightly. And as soon as I sit down or lay down I feel awful again. It’s so strange. This might be a weird question – but have you had your neck looked at? I’ve been following Jennifer Brea's story – she made the documentary called Unrest. After seven years of chronic fatigue syndrome they found out she had cranial cervical instability and she had neck surgery and it relieved all her symptoms. I recently had an MRI and it shows that I have severe cervical stenosis and that basically the narrowing of my cervical canal is pushing on my nerves. Could be causing a lot of my nervous system problems. Going to see a spinal specialist next month. I know you’ve been suffering from this longer than just about anybody here!

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    • Posted

      hey thanks for info, Actually at the very beginning Ive seen this neurologist who happened to be vertebrologist at the same time (specialized on spine) . He didnt check me specificslly for what you said, but Ive had physical exam done by him along with MRI of head and upper neck and everything was alright. Also my problems seem more to be connected with immunity

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    • Posted

      oh gotcha. that’s good though – one less thing you have to worry about! Yeah I thought mine was immune system problems but all of my immune tests are normal and I never once had elevated white blood cells. Even when my mono test came back positive. It’s so strange. I am taking Valtrex for hopefully six months to see if we can get some of these viral loads down. It’ll be interesting though to see if it is all spine related. There are three cases of women who had severe chronic fatigue syndrome following a virus and it turned out to be cervical stenosis. All three recovered after surgery. what is really clear to me is that we have to be our own advocate. I’m really thankful for these forums and all of the online resources we have access to. I hope you get to the root of your problem and can find a treatment! Have you explored antivirals? Here in the US I had to find a natural path to prescribe them.

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  • Posted

    Hey Lob,

    I wish there was an easy and definitive answer to your question, I can totally understand how frustrating it is when you want to be active and your body just doesn't feel up to it. I suppose the best thing is really to just listen to your body daily and when it really needs rest give it rest, but remember it's okay to push just a little when not feeling 100% after the acute phase, sometimes that can be helpful but of course without pushing too hard.

    When feeling well and full of energy, don't do too much, and when feeling tired find a balance between lots of good rest and also doing even small things too which can be good for you mentally as much as anything.

    But again it really depends on your body and what it's dealing with Lob - I guess the advice would be different for different people depending on their own individual circumstances.

    Hang in there and still believing that better times are ahead for you and that you will get a breakthrough in all this - hoping and praying for that - don't give up.

    Craig

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    • Posted

      Hey Lob,

      That's right, I had a period of about 3-4 weeks of quite intense joint pain, particularly affecting my knees and arms and it was so strange, I was so weary by that stage of the virus - but as you mention it was just after that period that things started to really improve. I look back on it now as though it was kind of like a last push of my body to get rid of and on top of the virus for good - so if you are going through that kind of phase right now remember there is hope and it could mean that something to do with recovery is happening in your body.

      Craig

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  • Posted

    Hi Lob,

    I think this is related to the immune system, I often wonder if the down times are caused by the virus trying to come back and the immune system responding to that. If I have a down day I rest and then just do what I feel up to, if it is a work day I have to push through. I also think that sometimes it helps get your mind off things, on those days I try to get to bed early.

    When did you first get sick? I remember your name from around the time my daughter and I got sick. Oct-Nov 2016.

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    • Posted

      yea I first got sick in April 2016. Ive never felt like same though. Now its switching between 2 states. I feel alright but fatigued and sick, then I do something, stop feeling fatigued and sick but start to feel very weird and foggy. Then after enough rest Im back to normal but flu-ish.

      If I just rest nothing really happens and I still feel the same flu-ish. Either way, I dont really enjoy anything, cause everything feels like effort. I mean there are things that interest me but its more like a work. Playing music, hanginout with friends, playing video games. All of that feels the same as school assignments , cause they all just take energy I dont have.

      So I mostly do productive things over fun things, cuz I feel good from doing something productive, but I dont feel fun. Id like it to be as before, when I was the most relaxed person ever.

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