1. Community
  2. Brain and nerves
  3. Chronic Fatigue Syndrome

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

Prev
  • jackie00198
    jackie00198 elaine_9632

    Posted

    I'm so sorry that you have this illnes, and that you've had to learn the hard way about not pushing yourself. I think your experience has happened to all of us. It certainly happened to me, over and over. You'd think I'd learn, but the problem is, the bar keeps changing. Last year, when I traveled to Seattle, I relapsed badly, even though I'd made the same trips previously several times. You're relatively newly diagnosed, so your prospects may be better than some long termers. Get plently of rest, even when you're feeling better. Otherwise, you can fall into the push/crash cycle. Learn to pace yourself. Eat healthy: fruit, veggies, no sugar or caffeing. You might find that protein can help boost your energy. Get as much sleep at night as you're able. And if you can, go to an ME/CFS specialist, preferably an infectious disease doctor. Keep posting and let us know how you're doing.
    • elaine_9632
      elaine_9632 jackie00198

      Posted

      Thank you for you reply Jackie, learning to pace myself i now undestand is very important, how long have you had this illness?
    • jackie00198
      jackie00198 elaine_9632

      Posted

      I've had this for over 15 years. Can't believe it. Luckily, I have a very supportive husband.
  • sue81694
    sue81694 elaine_9632

    Posted

    Many people talk of relapses and periods where they don't feel so bad.  How long do the clear /relapse periods last?  My relative seemed OK for around 5 months last year and started jogging.  He said he never felt  better but never completely back to normal during this time.  Then suddenly he had a relapse last Autumn.  With this new diet he is on he is feeling a lot better but as he says, has an underlying tiredness.  In his words 'the fatigue has gone but he still feels a bit tired'. Is this a pattern anyone can identify with?  Thanks.  Sue
  • beth97678
    beth97678 elaine_9632

    Posted

    Boyfriend has had ME for the past 30 years.I must stress that the acute period of this Herpes-related disease  was about a year, then 3 years of semi acute and thereafter energy levels not ever the same as before, although he leads a  normal life now, but energy levels are still lower than before .

    A good diet(lots of meat,veg,salads and fish-not too much starch and sugar) helps, as well as large amounts of vitamin D and C  do help..

    I'd suggest not compromising your immune system further ,by avoiding shared computers,investing in a rather nice pair of light leather gloves for shopping in the supermarket and visiting the doctors surgery-anywhere lots of people handle stuff,and getting plenty of rest.Ignore those who try to make you feel guilty because you're tired all the time.Identify the essential things you have to do and sod the rest.Pace yourself. Be a little selfish and say no .Epstein Barr is a virus(like chickenpox and all the other herpes ) that stays in the body for life, kept in check by your immune system.So boost it by any means possible and avoid others infections as much as poss: too. Good luck.X

  • kathleen42380
    kathleen42380 elaine_9632

    Posted

    Hi Elaine.

     I was diagnosed with Post Viral Fatigue Syndrome 9 years ago, but I must have had Chronic Fatigue Syndrome for a lot longer. I kept going to the doctors telling him that I ached all over and when the ache went I felt sore all over. I also felt exhausted as well.

    Then I developed PVFS and it knocked me off my feet literally. My legs felt like lead and I struggled to walk. I was and still am to a certain extent house bound. I use a walking stick and a mobility scooter to get around.

    When I saw the specialist who diagnosed me with PVFS he said to my doctor that it was my vertigo that had caused this problem. My own doctor seemed very surprised at that.

    My vertigo as since turned into Meniere’s (tinnitus) as well. I have also other problems caused I would presume by PVFS.

     I do meet once a month with three ladies who have the same problem and that helps me a great deal in that I don’t  feel so isolated,

    You do need to pace yourself and if you feel like going to bed for a nap do it. I was retired by the time I was diagnosed so that was one less thing to worry about.

     

    • elaine_9632
      elaine_9632 kathleen42380

      Posted

      Hi Kathleen

      I'm sorry you've had this horrible illness for so long. It will be a year for me in August. I recently saw my GP who suggested a referral to a cfs specialist, although more tests would be required first, I assume routine blood tests, I don't know what help or advice they can give but help with the dreaded but necessary pacing would be helpful. I liken my current lifestyle to having £70 a week but rather than using £10 a day I will generally use it all in a day or two and be left with nothing. One of the things I find most difficult and frustrating is other people's reactions and understanding of cfs, but I guess until you experience it why would you!

      I'm glad you have the meet ups with the other ladies who are in a similar situation to yourself, I would like to do the same in my area, because as you say it can feel so isolating at times

      Take care

      Elaine x

    • kathleen42380
      kathleen42380 elaine_9632

      Posted

      The way I pace is to do a little bit of housework when needed. I will maybe clean a cupboard out or just one shelf and then rest. I only do the things that I can see. The thing also is when you have a good day don't do too much, because you will pay for it a day or so later. There are things you can buy to make things easier for you, I have a perching stool that enables me to part sit and stand at the sink or to do the ironing (not that I do a lot of ironing). Because I have problems standing for any length of time.

      Over the years I can see that I've improved and get a good deal of satisfaction out of what I have accomplished. My husband does the cooking so this give me time to do whatever, My family have also grown up and left home.

      Hope you will soon be able to relax and not to worry about what others might think. 

  • Annaanna
    Annaanna elaine_9632

    Posted

    Hi,

    Just wanted to write on here for anyone who may be reading these threads - you WILL get better. After being diagnosed with PVF early this year, I am now up and back at work and around again. I remember thinking I was never going to get better and a lot of the thread replies are pretty pessimistic. The best of life is yet to come!! Power through

    • Beverley_01
      Beverley_01 Annaanna

      Posted

      Hi Annaanna,

      It's fantastic that you have recovered from the PSV, many people do as do people with CFS/ME. It's a fascinating condition with much needed research.

      However, we are all different and i don't feel that your comment is helpful to those who are struggling with severe symptoms right now. 

      Beverley

    • jackie00198
      jackie00198 Beverley_01

      Posted

      I agree, Beverley. I'm sure Annaanna meant well, and it's great that she recovered, as many do. But it's not helpful to characterize replies as pessimistic, since people are only venting about their very difficult experiences with this illness. Also, trying to power through is about the last thing you want to do.

    • Beverley_01
      Beverley_01 jackie00198

      Posted

      Hi Jackie,

      I agree. I don't think I've seen any pessimistic threads myself and pushing through isn't anything I'd recommend nor lot's of experts.

      Beverley

  • carol_83626
    carol_83626 elaine_9632

    Posted

    Hi my name's carol and I'm new to this site, back in March I became really poorly , me and my partner broke up on a Friday and by the Monday I was very poorly , dizzy, headache, weak , pains under my armpits , and up and down my legs and I knew this wasn't flu because it felt different. After 3 weeks of Drs visit I was told it was a virus brought on by stress but I wasn't so sure this was correct, I was feeling worse every day and had started having panic attacks I'd had every blood test going but all came back clear .I then saw another gp and I was told I'd got tonsilitis and larengitis with possible glandular fever bloods where never done to rule that out but it made sense I had all the signs and symptoms. After 9 weeks I started to feel better and went back to work and all was well. Then 7 weeks ago it felt like it had all come back I've had lots more bloods done and all normal ... after reading on this site I know I've got pvf I can almost relate to everyone's story on here .or though I'm feeling better each day it has left me feeling quite shacky and a really bad back ...has anyone suffered with bad back after pvf?? Many thanks carol xx

  • Sarah0350
    Sarah0350 elaine_9632

    Posted

    Elaine and David's stories are just like mine. I'm in month 15 of pvfs. Went back to work briefly at around the eighth month, but that didn't last. Has anyone recovered from this? Any crazy treatments that worked? I'll try anything...

    I know this thread is really old, but I'd love to know how Elaine is doing now.

    • elaine_9632
      elaine_9632 Sarah0350

      Posted

      Hi Sarah

      I'm sorry I have only just noticed this post! I would love to tell you that I have returned back to my old self but unfortunately I am coming up to four years with this now. Have tried with pacing for a long time but some things in life do make it impossible at times and I seem to have had a run of them lately, but I will get back on track. How are you doing? I hope things are going well for you

      Elaine x

Back to top
Prev

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.