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? Post viral fatigue - advice/reasurrance needed

Posted , 6 users are following.

samantha58813
samantha58813

Hi there, I have turned to this forum because I’m pretty low and anxious right now, I am fit and healthy 31 year old mum of 2, I’m always on the go and always have been. 

About a month ago I became quite unwell, high temp, flu symptoms (without the congestion) I was so tired and every muscle and joint hurt, docs tested for glandular fever and then CMV - negative, all my bloods are normal, they assured me it was just a bad viral infection, I have had periods where I have passed out from my muscle aches and weakness, after around 3 weeks I felt so much better! Then I went ahead a had a normal weekend, I went out, had a drink stayed up late 3 nights in a row, now every single lymph node in my body is swollen again and I feel awful sad  (had this confirmed yesterday by yet another doctor, she assured me it was probably post viral fatigue and I just had to wait it out and rest ect. She is sending for more blood tests just to rule out any raise in my white cell count, the pain I am experiencing today is awful, I feel like I’ve been hit by a bus - (I’m a staff nurse on a busy Neonatal unit - I struggled through a 13 hour shift Monday and then a night shift last night) my boss has suggested I reduce my hours until I’m better, but I honestly just don’t understand why I’m so wiped out after feeling back to normal last weekend,  has anyone else experienced swollen lymph nodes with post viral fatigue? 

Any answers would be very greatfully received! 

Thanks 

Sam 

0 likes, 20 replies

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  • samantha58813
    samantha58813

    Posted

    Thanks very much for all of your advice, I’m quite a clean eater anyway and pretty much vegetarian, but I’m definitely going to have a go at being as clean as possible, I’m desperate to feel just a tad like my old self, today is an ok day, my neck and legs are quite heavy and my lymph nodes feel like they are buzzing, my temperature tends to fluctate from normal to mild fever on and off throughout the day - not sure if this is normal in post viral fatigue? 

    Sam 

    • Beverley_01
      Beverley_01 samantha58813

      Posted

      Hi Samantha,

      Poor temperature regulation is definitely part of many peoples symptoms. I go red hot, feel faint go lay down and then get a freezing cold nose and right foot! Even in summer.

      I don't tend to notice my lymph nodes so much, sometimes i can sense they're working overtime but don't feel for swelling. I can feel so very ill and sound ill and then it disappears sometimes within a few hours. Not saying I'm better then, just not like I've got a throat infection.

      Beverley

  • philsey
    philsey samantha58813

    Posted

    Hello Samantha.

    After 25 years with this illness I would strongly recommend you take two weeks off work to assess the level of your illness so you can pace yourself and make any necessary lifestyle changes. The first thing to do with this wretched disease is acknowledge it.  M.E. can be coped with at any level if you balance exertion with proper rest. Only YOU can find what that balance is, however, and it WILL mean sacrifices. At the moment for example, I am in relapse. I was scared I was going downhill fast. But I had to be rational. I found by trial and error I need about 8 yours bed rest per day, walk no more that 1500 paces a day, don't climb stairs, don't get up from a sofa more than 10 times a day, don't drive more than twice a week etc etc.. 

    Once you have worked out what level of exertion does not make you worse adapt accordingly, and put your human relationships ahead of everything else: it is better to lose a career than a spouse. I speak from bitter experience. What energies you do have for exertion must be dedicated to your children and loved ones. Most people are ill for sometime between 1 year and 7 years. If that sounds like an impossible time frame be glad you haven't got the long term kind like me!

    Prayers,

    Philip

  • samantha58813
    samantha58813

    Posted

    Thanks so much everybody that has taken the time to reply to my post, it is early days for me, just been for yet another blood test which we all know will come back normal 🙄 I guess the docs just like to feel like they are doing something, meanwhile I feel frustration pouring out of me every time they say it could be this or it could be that but it’s probably ‘just’ post viral fatigue 

    I’d love them to feel how I feel just for a day!

    I’m so greatful for everyone’s replies - it’s so nice knowing I’m not alone in this and also that I’m not going crazy because on the outside to everyone else I look just like me, I can sense peoples frustrations when they ask how I am today and my reply’s never differ because I genuinely feel so pants I don’t have the strength to lie and pretend I’m ok  

    • AndyC77
      AndyC77 samantha58813

      Posted

      Hah yeah it alwasy makes me laugh when people ask how you are. I just say yeah im fine or good, whats the point in telling them every little niggle or that i just spent the best part of two weeks in bed?

      Just post viral fatigue? Yeah right, let them live with it, they think you will come out of it because it was "just" a virus. Prooves the total lack of understanding and respect when it comes to ME. Try to never over stretch yourself too much because it can get worse. You need to be in the best shape you can be for your children.

      I expected the government to help me with disability benefits and wow what a mistake that was. I had to leave my home and move back into my parents, i am on universal credit on the minimum, the health assessment gave me zero points so i am perfectly fine to work. What a load of nonsense the whole system has become.

      Sorry, i got a bit ranty there.

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