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Post Viral Fatigue

Posted , 17 users are following.

elaine_9632
elaine_9632

Hi my name is Elaine, this is my first post as I have just came across this site. I was diagnosed by my doctor in August of last year as having Post

Viral Fatigue and was signed off work, during my time off I experienced

many different symptoms and had good periods and bad periods, of which there seems to be no pattern. I recently decided to return to work on a phased return of 4 hours a day. I soon realised that this was not going to be

possible as i could not even manage the reduced hours, so regrettably had to resign last week. I have now found since my attempted return i feel so much worse than i did, so assume pushing yourself is not a good idea, has anyone else found this?

I feel lost and do not know what i should do next, the benefits seem like a confusing nightmare

3 likes, 31 replies

31 Replies

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  • david59662
    david59662 elaine_9632

    Posted

    Hi Elaine,

    I was very similar to you, i became unwell Nov2013 then diagnosed with PVF, i never got better, some symptoms have improved but the one thing that got worse was the fatigue, i now have CFS diagnosis, i no longer work because of my illness. It's been 15 months of hell for me, but i am still here and optimistic that i will gradually improve. I used to be a semi professional triahtlete, and at 33 the peak of my powers. I fought this illness really hard for the first 6 months and feel i paid the price, i would advise lots of rest and high quality nutrition. Buying whole goji berries, soaking them overnight then blending them in water has helped my energy levels, you might want to try this, soak a big handful in 500ml water. I've spent thousands trying to get to the bottom of my health but to no avail. I've tried lots of products too. Good luck ! My prognosis is recovery within 3 years and i would accept that. Who knows.

    • Tea_belly
      Tea_belly david59662

      Posted

      Hi David, just wondered who gave you the prognosis? was it your doctor or a specialist?
    • david59662
      david59662 Tea_belly

      Posted

      Well firstly GP after 6 months then several consultants all said CFS as all tests normal.
    • elaine_9632
      elaine_9632 david59662

      Posted

      Hi David

      I'm glad you are keeping optimistic as frustrating as it can be, thanks for sharing your experiences and advice, it really

      helped to hear from people experiencing similar things to

      myself

    • Guest
      Guest david59662

      Posted

      Hi David,

      Your story sounds similar to mine. How are you doing these days?

      I was a professional tennis player that came down with a illness 10 months ago.I use to push myself very hard physically and mentally.  I have had every test in book done as well as all my blood work. Everything completely Normal. My symptoms are weakness in upper legs only as well as ringing in ears, nausea and flu like symptoms. I have been dealing with this for 10 months and cant get any help from any of the 15 Doctors I have seen. Its been very hard as I needed to quit playing.

      Would love to chat

      Thanks

      Tim

  • sue81694
    sue81694 elaine_9632

    Posted

    Hi Elaine

    Very sorry to hear about your story and want to say you have come to a good place since there are many people like you here who exchange stories, treatments and so on.  Although I don't suffer,  I have a relative who does and am interested in this strange illness on his account - part physical part non-physical I'm beginning to think.  He had similar experiences to you in that he has had to give up work.  I havent heard it being described as post viral fatigue - only CFS.  

    Currently I am looking at diet - sugar restricted - as one approach. If you want to read about it it is on another thread.  Best wishes to you. Sue 

    • elaine_9632
      elaine_9632 sue81694

      Posted

      Hi Sue

      Thank you for your reply and yes this does seem to be a good place and probably a good place for you to learn more , as since reading some posts on here have realised certain things i had previously not thought were associated, other people have said they have experienced too

  • georgeGG
    georgeGG elaine_9632

    Posted

    Dear Elaine, 

     

    I am very sorry to learn of your ailment. I was diagnosed by my GP as suffering from  a 'space age virus'  A consultant found I had sarcoidosis. His treatment was a disaster for me. The sarcoidosis was not a problem except for serveral  bouts of iritis. The real problem was ME. My testemony is posted in five Discussions. Reading widely  in the discussions of this group will give you a wealth of information. One constant is the necessity of pacing yourself if you are to make progress. Exertion in very counter productive.

    Wishing you profitable research and a steady if very slow recovery.

     

  • Tea_belly
    Tea_belly elaine_9632

    Posted

    Hi, my story is very similar to yours in that I tried to go back to work on reduced hours but couldn't manage so am currently off sick on half pay. Work are now looking at dismissing me but without a diagnosis I won't get an ill health pension so will have to wait 15 years for my pension, rather than 7.  Go on the action for ME website for help applying for PIP. Don't be put off, I applied and got it. You should also be able to claim ESA, either contribution or income based. 

    I have definitely found if you don't pace yourself well or do too much when you feel well then you will feel a lot worse.

    good luck x

    • elaine_9632
      elaine_9632 Tea_belly

      Posted

      Hi Tea belly

      Yes it has certainly been a lesson learnt, I have never felt this bad before attempting to go back to work and will certainly be pacing myself from now on . I'm sorry you have experienced similar and are now having further problems with work, why no diagnosis? It is hard enough without the financial stresses but thanks for pointing me in the direction of the website, i am going to try to claim esa

      take care x

    • Tea_belly
      Tea_belly elaine_9632

      Posted

      Hi, sorry meant to put prognosis- that seems to be the one thing we need but no one can give us x
  • karin65289
    karin65289 elaine_9632

    Posted

    Hi Elaine,

     

    I'm sorry to learn about your struggle with CFS/ME or Systemic Intolerance Exersion Disease (10/02/2015). I was originally diagnosed with Post Viral Encelphemyetis or Post Vaccinal Encelphemyetis... It's all simular.

    As you noted there are numerous symptoms and they can change up. It's probably extremely discourging to have attempted to return to work, only to 

    discover that was beyond your limits. Pacing is the mantra for this illness. There are numerous books available that can help with pacing, but you may be able to do it yourself.

    I found that thinking of life in units of energy is often helpful (until I miscalculate and end up crashing). Even the most pleasurable activities use some of your energy units - so one learns to balance things and sometimes put off "what should be done" with nurturing and pleasurable things. 

    I hope you can find someone on this site to address disability and benefits. I live in Canada, so I can't help you. I think since your original diagnosis was for viral fatigue (0r post viral fatigue) that your doctor might be able to help somewhat. The forms can be daunting but as around for help. I used to be social worker and part of my job was assisting people go through the process of apply for benefit s.  Ifwant to apply for benefits you may want to get referred to a specialist, in addition to your family doctor.  In Canada, at least, a nuerologist or ME?CFS specialist carries more weight than a regular doctor. 

    Good luck to you elaine.  Keep in touch, there are lots of good people on this site and a wealth of knowledge.    Karin

    • elaine_9632
      elaine_9632 karin65289

      Posted

      Hi Karin

      Thank you for reply and advice, everyone have been kind and helpful x

  • wknight
    wknight elaine_9632

    Posted

    Go to the action for ME site and download their energy planner so you can record how you are using your time and try to manage it better.

    i have been suffering for about 8yrs and in the last 12 mths I have embarked upon serious pacing and I can now ride my bike for 20miles without any effect, it was 60miles. If I can get to 30 I will be very happy. Will power and pacing worked for me as I have been fighting this illness as I wasn't going to let it beat me best of luck 

    • elaine_9632
      elaine_9632 wknight

      Posted

      Wow you are doing really well, and i will sure take a look at the plannerthank you and i hope things continue positively for you
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