Post Viral Fatigue

Brain and nerves
1

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

2

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.

3

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 

4

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.

 

5

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

6

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

7

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

8

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 

9

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.

10

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

11

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

12

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

13

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

14

Hi Karin

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

15

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

16

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

17

Thank you George, you too

18

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

19

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

20

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