I started with a very slight cold in January, then did a 45 mile cycle a couple of days after feeling better. I have been ill on and off ever since. I get good days and bad days. I had blood tests for everything in Feb and then again in June and everything says I’m a fit and healthy person, except that I have post viral fatigue due to my immune system being really low. I rested for a month and then tried to get back into cycling/running but as soon as I did much over 30 minutes I was back to square one. Feeling really tired again today, feel like I have a head cold. Has anyone on here had this and recovered? I was taking vitamins/Vit c/Iron/Probiotics/zinc etc and stopped them a month ago and feel no different. The doctors have said that if I eat a healthy diet (I do)then I shouldn’t need anything to help my recovery.

Yes, it will come to an end eventually, it tails off, you won’t wake up one day and think ‘I’m better’ its more of an incremental thing. I had it a couple of years ago. It is very frustrating!

Nope.

And by that I mean I have had it for 6 years now and never fully recovered. :/

I took Echinecea and Korean Ginsing, I think they helped but you just need to do what your bodys asking you to do and rest. Wishing you a speedy recovery.

Exactly the same with me – had a nasty cold/virus about 18 months ago – never got better. Kept thinking I was then trying to get back into biking etc and just getting worse again. I ended up quite seriously depressed also which I think is common. For me it was a fairly massive blow to general confidence as you’re never sure if you are going to be up to doing something.

I don’t know this for a fact but I suspect that trying to get back into biking before I was properly recovered has prolonged the illness. If you are going to do something tiring/stressful make sure you allow time afterwards for proper rest.

I am a lot better now than I was a year or so ago when I was bed-ridden a lot of the time – I manage to go out biking a bit and now have a decent social life etc. Still only able to work part time though really. I really hope that I will fully recover, but I don’t know if I will, or how long it will take. I found doctors to be fairly unhelpful – once they have done the blood tests to rule out anything ‘serious’ they are not interested basically.

edit: just noticed your username!

My little brother did. About 5 years of in bed a lot, occasional ‘Andy Pipkin’ moments where he did loads of stuff really quickly in a couple of hours and then crashed for a week afterwards. Intellectually he was well ‘foggy’ for most of that time, he still had all his wit and faculties but a bit slow like when you are hungover and can’t think too clever even though you know you could. He recovered, did some access courses and just got a first in his B.Eng. You’d never know he was ever ill these days.

[edit] If you do turn out to have ME, having an understanding GP being able to stand up for yourself or having a partner/relative who will is very helpful. A friend has recently moved house and therefore GP’s, and is having the ‘there’s no such thing as that’ conversation with new doctor. There was a pretty good thread about this on here last year sometime, with a lot of interesting experiences and ideas about treatments/therapies, though i can’t remember what the title was if you wanted to search for it.

Intellectually he was well ‘foggy’ for most of that time, he still had all his wit and faculties but a bit slow like when you are hungover and can’t think too clever even though you know you could.

Yup – this is a horrible aspect of it imo, makes you feel really stupid and incapable sometimes.

Glad to hear your brother got better.

grum, I am ‘grooming’ him to get a proper mountain bike so maybe he will crop up on here sometime. He is also doing interesting things as an engineer in the ‘stupidly-hi-spec-bearing’ industry now, so i look forward to him engaging in some entertaining argu-fests on here. 😀

Grum (Good name :D)…very true about the doctors. Mine have put me on a very low dose anti-depressant, I’m not depressed but apparently it’s so your brain tells your body that your not ill so it recovers…or something like that.
I have what my husband calls ‘tigger’ moments when I have loads of energy and start doing things again (not running or mtb-ing) but it doesn’t seem to last more than a coupls of hours.
I am about to move house too, very stressful and the stress seems to start it off again. I’m hoping that when we move it will get better. We’ve stayed in Lincolnshire for the last 5 years until our youngest son finished school and we’re moving to the peaks…our dream for years… and I want to get better so we can do all the mountain biking that we’ve wanted to do for years without having to drive 2 hours to do them.

Mine have put me on a very low dose anti-depressant, I’m not depressed but apparently it’s so your brain tells your body that your not ill so it recovers…or something like that.

I know of a couple of people who say they have done well on ‘subtherapeutic’ (for depression, that is) doses of Amitryptiline. As a nurse I am ashamed to say i can’t remember why it is it should help, but I seem to remember oldskool amitryptiline (as opposed to newer SSRI/SNRI’s) making sense. Plenty of ME sufferers websites out there will probably tell you though.

Remember you might feel depressed because of the huge change in your life rather than the neurological impact of the illness. Keep talking! 😀

Grumlethegoat – a couple of years ago I went down with swine flu (remember that ‘epidemic’!) – pretty ill for about 2 weeks, and then just went back to work / activities as normal. For me the ‘as normal’ at that point was working really long hours, renovating a house, and doing a lot of outdoor activities (biking / fell-running etc). I felt pretty shit, but just carried on and then went crashed out for nearly 24 hours after trying to go for a long ride in the mountains.

I was lucky – my Dr recognised it as Post Viral Fatigue straight away, and the organisation I work for has a really good Occupation Health advisor. Every case is different, but the following might be of use / help to you:

– the key is manage your activity so you achieve an ‘even keel’ and avoid ‘peaks’ and ‘troughs’ of energy – ie you do things and then end up flaked out.

– start by keeping an ‘energy’ (or lack of!) diary – ie record when you have peaks and troughs, and see if they are associated with certain time periods or if they co-incide with doing stuff for a particular period of time.

– Use that as a basis for reviewing how and when you do stuff, so that you stop or reduce your activities before you ‘crash’

– I made a list of all the activities I did in the 3 areas of my life – work, domestic, leisure. For each of these sort out which activities can just be stopped, which can be delegated to someone else, and which you have to do. Make sure you include some pleasurable things in the ‘have to do’ list, not just work or doing the hoovering!

I worked part-time for 3 months, then gradually built my hours back up. Accepted just doing ‘gentle’ activities for a while (and learnt how to enjoy just being outdoors and appreciating time with friends), then slowly increased this. It took me 6 months to ‘feel’ that I was better, and 12 months before I actually was back on full form. Now I’m back to normal and bounce around biking, hiking, climbing etc (and unfortunately still a work-a-holic – must try and stop that before I go down with PVF again!).

Finally, don’t underestimate the mental effects of PVF – not only are your physical energy levels lower, but so can your mental and emotional capacity be reduced. I found it very difficult to cope with many things and had severe anxiety attacks. I didn’t realise that it was connected with PVF and just felt worse as on top of everything I just felt I was being ‘flakey’. So please try and get as much support from your friends / family / work as possible, and explain that it effects you both emotionally and physically.

If you want to chat about it contact me on suewilliamsouATyahooDOTcoDOTuk

Sue..Thank you for that I may well be emailing you in the near future.

Moved house on 7th July and loaded up lorry from 8 in the morning and finally got the last lot off at 9:30 at night and felt tired but not ill, felt tired for the next few days but gradually felt that I was nearly back to normal. Went to the new local doctor to register and he upped the dose of anti depressants, he was really good and seemed very knowledgeable about PVF. Still feeling really good so over the next two weeks I did the Edale/Kinder Scout walk, dug up front garden and laid new stones, painted, generally got house up to how we want it and then last Friday I felt awful again and have been bad all week. I’m so tired and I have this head crushing feeling.
I’m really hoping that this is just a blip and that I haven’t over done it.
I’ve been making a diary of what time of the month etc it is to see if that has any affect, also what exercise I have done but there isn’t a pattern to what I have been doing and what I feel like.

grumlethegoat – I’ve only just seen this thread. Sorry to see you aren’t feeling too good. As a sufferer myself (last 5 years) I can see that you’ve ‘over done it’.
I have days when I feel totally normal and forget that I suffer from fatigue syndrome and just do all the the things that normal people do, but in an effort to catch up, I ‘over do it’ and pay the penalty.

I sleep, which seems to help and try to eat a healthy diet with plenty of snacks through the day. For myself the problem becomes worse when I’m cold. Trying to keep warm uses up so much energy, then I’m ill again.

Try and pace yourself, especially on good days, there is the temptation to do too much. Even if you feel full of energy take it easy for a few days, then act normally.

As others have said It’s important to have an understanding family and friends to support you through this.

Keeping your ‘low immune system’ healthy is important. Friends understand that if one of their offspring is sick (cold etc) then they don’t visit. A simple cold for some people is feeling a little unwell for a few days, for us it’s being bedridden for days and then trying to recover.

As for your initial question, yes, I do believe it will get better for you.
For me it’s been a long haul. However I’ve not suffered as much as some people. I’ve come to accept that it does ruin your social, working and normal day to day life. I’ve become a bit agoraphobic and always need to be in my ‘safe place’.
Every year has become easier though and I’m optimistic for the future.

Good luck and you are not alone.

Bunnyhop. Thank you for that.
5 years is such a long time, fingers crossed that you are fully recovered in not too distant future.
A question….
Does anyone on here get any reactions from sugary foods or eating white bread?

No, but when I took dietry advice,(to boost my immune system) I was told to only eat brown (whole meal) bread and lay off all sugar, even sugary fruits like, melon, pear and grapes. Mmmm, very hard as I love chocolate 🙂