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PVFS or ME/CFS

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Liz8432
Liz8432

I have had a diagnosis of Post Viral Fatigue Syndrome following what I believe was an EBV infection last August, I got over the infection and the fatigue followed soon after. The last 3 months of the year were very difficult, extreme fatigue to the point of some days staying in bed all day, not relieved by rest and sleep, problems sleeping, waking up often during the night, problems with thinking clearly, headaches, generally achy, stomach upset, feeling sick, heart palpitations.

However early on in January I felt that I was beginning to feel a little better and this went on day after day until I almost felt close to normal again, for 3 weeks I was able to exercise and do all the things I used to do, albeit aware that I wasn’t quite recovered but delighted that life was getting back to normal, I started making plans and then last Friday I was extremely tired early in the evening for no reason, same thing Saturday and then Sunday WHAM!! It hit me again!! The full blown debilitating fatigue and I’ve had it ever since.

I’m so disappointed. I really thought I was getting better and on the road to making a full recovery, I thought it was a one way street, I didn’t realise I could take a U turn and end up back where I started.

So I have some questions. Firstly is this normal with PVFS/CFS to feel so much improved and then suddenly for no reason for it to take a nose dive and you feel as bad as ever.

My diagnosis, albeit flimsy and based on what seems most likely, is Post Viral Fatigue, at what point will PVFS become accepted as ME/CFS

My GP seems quite dismissive of my symptoms and I don’t really feel he understands or accepts the full impact they are having on my life. I live in the South West of England. Are they any ME/CFS specialists I can see?

Any suggestions on treatments or any way to manage these symptoms to make them less invasive on my life

And please can someone give me their success story. I’m feel so depressed that I’m back where I started, all the work I’ve done and self help I feel has all been for nothing because I’m back to square one. I’m very tearful writing this because I just feel so alone and despondent, I don’t feel there’s any help out there for me, all I get is ‘that’s probably what it is, nothing we can do, no cure and off you go’.

I should say I have had many tests, pretty much every blood test going including EBV which was positive, everything else has come back normal.

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  • daisy_rose
    daisy_rose Liz8432

    Edited

    hello, i have cfs, got diagnosed last september (after a full year of badgering the doctors and multiple bloodtests that came to no avail) it was caused due to having covid. I also have days where im just in bed all day and wished that using the loo was something i could do over the phone because it just is just more than i am able to do but the next day i feel fine and im cleaning the house, going outside etc. its completely normal

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