After having the dreaded flu 5 weeks ago, I haven't recovered and now the doctor says I have post viral fatigue. I'm lucky that my employer have been flexible with my hours so I'm now only working for 5 hours a day, but I have to admit I still feel pretty sh*t most of the time, and now it feels like the virus / infection is coming back again.

Has anyone else had this before? It's getting me down as I can't do any biking or other active outdoors stuff, (so consequently don't see friends and spend most of my time inside on my own) and i have no idea how long this will last. Not sure whether it would be best to take a complete break from work and go away somewhere warm to recover (any suggestions for where a solo woman could go and chill out?), or to WTFU and push a bit harder?

DOn't push it. "Post viral fatigue" is doctor speak for "your body's f****d but we don't actually know why". Mrs NBT was diagnosed with it several years ago and unfortunately it's one of those things that never seems to go away, but can be managed

What we've found is that Mrs NBT is now more susceptible to minor illnesses and prone to becoming tired very quickly. The rate at which this occurs increases as she uses more of her energy reserves, at an almost exponential rate: there is a tipping point past which nothing can be done. Witness earlier this year when we spent 4 glorious days skiing powder in Utah: however as Mrs NBT was not keen on the heavily sweetened and processed food, she did not eat well enough over the days to keep up with her energy expenditure. Having skiied till 2pm on Day 4, by 9pm she had succumbed to the viral bronchitis that had caused minor sniffles for one or two of the group, and spent the next 3 weeks unable to get out of bed. I kid you not, if you do not take care this can wreck your life.

Having said that if managed properly, you can resume a more or less normal life. We've found the key for Mrs NBT is to keep her energy levesl up. This means that we've had to change eating habits: rather than a small breakfast, small lunch and massive evening meal, we've distributed food intake moire evenly, so she gets more food during the day and less in the evening. When I'm at work, I encourage her to eat 2 small meals at say 11am and 2pm, rather than a larger lunch at 1pm. We also take notice of how she's feeling and will cancel or change plans rather than risk her becoming ill again. Having regained fitness, do no attempt to push it too soon or you may tip past the balancing point and go back down again: Since her illness in Utah in March, Mrs NBT has teken most of the summer to regain a reasonable fitness, but is now up and about again, and was respectably mid-pack on the 25 mile STW ride around Ogden Water

If you would like to speak to Mrs NBT about this more, my mail's in my profile

I've had something similar though maybe not as bad. Was really ill with a virus a few weeks ago and I receovered very slowly and I'm still feeling quite weak and tired. Finally starting to feel a bit better and been out on the bike a couple of times just doing gentle stuff.

I don't know if this goes against doctors orders but I feel a lot better for doing some exercise, though it has seemed to make me pretty knackered. It's do depressing stuck inside feeling knackered and miserable, which I think makes the fatigue worse.

Don't know if it is placebo effect but I have been taking regular echinacea and vitamin C recently, plus I haven't drunk or smoked anything in about 3 weeks. (almost) 🙂

Hope you get better soon.

Has your doc considered that you may not yet be post viral, and that you may have a long running viral infection requiring treatment. Mrs midlife is prone to bad outbreaks of mouth ulcers, and has a standing prescription for antivirals so she can get straight on them if an outbreak starts. Last year she had the whole post viral thing going on for months, chesty cough, no energy etc. Back and forward to the doc for weeks. Up pops a couple of cold sores, in with the antivirals and the whole condition is sorted in about five days. Energy levels back to normal. Aches and pains gone. Might be worth a try. We (and the doc) agree she should have tried them earlier.

Hello Sue,

I had this PVFS then CFS since april / june and still making a slow recovery. Most people just do not understand how bad this illness can be and that attitude can be evident in the nhs too…

It totalled me physically and mentally- I gave up cycling / hiking for 4 mths ( = mental distress at being a coach potato ) as I just couldnt function anymore – I had a lot of time off work and spent a lot of time getting fobbed off by the nhs who just seem keen to diagnose PVFS / CFS and dish out anti depressants which I refused rather than treat whatevers casuing the illness – I strongly suspected Lyme disease and even had a test = negative but 2 of my outdoorsey mates had similar symptoms but they got a rash and tested positive… I am still not sure if I copped Lyme or not after a ticktastic time earlier in the year…

I am now getting out again on the bike at a much reduced level to when I stopped but even that is a vast improvement. Now I am prone to picking up anything thats going around – off work now with a nasty chest infection…

I took a lot of supplements and rested and found info on web – I was scared to death it was the onset of ME,as one doc thought it was…. Seriously take some time out and let your body heal – it maybe a few mths or a couple of years – dont push it as recovery will take longer.

email me snowpaul at hotmail co uk if you want any info / websites

Take heart,it will get better in time and there are far worse afflicted CFS/ME sufferers out there !

paul

I was diagnosed with CFS/ME way back at the end of 1998 and am still affected by it. Although I am able to hold down a full-time job and professional studying (at a push), the rest of my life (my freetime) is definitely affected by the ME. When I was initially diagnosed, I took a month off work and simply rested at home. However, I now realise that it was not quality rest, which may have benefited me at the time. My advice would be to rest, learn to relax and meditate (to fight the body's auto-immune response), eat healthily, and take regular but controlled exercise (e.g. walking, light swimming).

ME is largely a guessing game, with no proven method of treatment or improvement, and what works for one sufferer will usually not work for others. This, along with no proven diagnosis (diagnosis is simply a case of general symptoms matching the ME trend and ruling out other possibilities) does make it a very frustrating illness. Also, the lack of external symptoms (except for the seriously affected who are wheelchair bound) makes it a very mis-understood condition.

I have, and have had for the past 2years a problem with my imune system. Started on day when my tongue just swelled up.Not eaten anything different. 2-3 days after, i was run down like i had flu. This kept going on every couple of months. Been to doctors, the ENT at hospital and then to dermatology. Dr there is great and has looked at all different types of things that could be setting it off.

I still have it now and its still ongoing. I'm in next month for nerve testing to see if they're shot. Also found out i had a crappy liver (blood tests) AND recouring glandular feaver (hence feeling like crap for weeks on end).

So far i have changed my diet and this has (we think) decreased the number of bouts i have. I also carry Max strength cold and flu tabs about with me at all times. As soon as i start feeling like anything is going to start, i get throwing them down my throat. Not ideal but tends to keep things at bay. I still ride but not as much as i want. I have to sleep after a ride(in the afternoon) and like nbt says, keep eating little and often.

Good luck with it…we know how you feel!!

Thanks all – it's good to know that there are other people out there who have / had this sort of thing and can go riding again / do other outdoor stuff.

My symptoms are probably most similar to mrs nbt / paul / jukeboxs – and much sympathy and respect for all of you for dealing with it for such a long time. I'm going to try altering what I eat when (I've always had the main meal in the evening), and I've already upped my fruit / veg / fish intake (I don't eat meat anyway, but have cut down on the cake and biscuits!) Paul and nbt – I'll drop you guys a line to fish for a bit more advice, if that's still OK.

I guess I'm still torn between whether or not to try taking a period of time off to rest and hope that that enables my body to 're-charge' more, or whether to carry on as I am now – feeling rather bobbins but not completely keeling over. I've got some deadlines at work to try and meet so I guess I'll carry on for now as I'll get far too stressed if I try and take time off now … and I'll carry on dreaming of being out on the hills 🙂 Fortunately I live in the mountains so i can at least look at them (although living somehere flat might actually make a 10 min gentle ride an option!)

For the last 5 years I've crashed every 6 months or so with flu-like symptoms, complete lack of energy and total fatigue. Normally happens about March and October, but hasn't happened this month.

I had a complete lack of help from the NHS apart from my GP advising that it was PVFS and to take it easy etc.

It tends to be brought on by colds, sniffles ,etc which then get progressively worse until I'm in bed for a few days, and not able to exercise for another couple of weeks. However it can brought on by stress, whether from work, kids, etc.

I've had it after completing the training for a half marathon and had to pull out of the event, but interestingly hard bike training doesn't seem to induce it – perhaps because my body is used to it after racing for years?

I haven't had it since March, probably because I only work 16 hours a week now, so I'm not exactly stressed because of work anymore and can ease off when I need to.

Fingers crossed.

One more for the support group – suffered with this for about 10 years – I've kind of got the fatigue bit nailed – knowing how to look after myself (currently only ridden once in the last 10 day due to sodding minor infection ) – the thing I struggle with is the chronic bit – tend to forget that its always lurking around in the background – oh watch out for stress that can cause ‘episodes’

These guys have some interesting studies on ME, PVF etc and I can vouch for the supplement actually working. MrsHector used to suffer terribly with recurring cold sores (1 a month) but since taking Eleuthorococus Senticosus(sp?)she barely gets 1 a year now.

Check out some of the testimomials here Elagen

I also carry Max strength cold and flu tabs about with me at all times.

isn't that just paracetamol & lemon ?

We had a bit of a run of this in our house. Background is two sporty people – one ex-rower who raced at a high level, one semi-serious adventure racer.
I went first, combination of 4 years of racing with a couple of really hard expedition races chucked in a 9 month period. Then a bit of overtraining, some weight loss, work stress. Kaaaboooom. Spent a night in the hall at home unable to move. Had undiagnosed abdominal pain, as in, i couldn't stand up. Hot, cold, felt truly awful. And it was way worse than man flu. My EBV counts were off the scale so i had reactivated my glandular fever. The abdo thing was odd but in hinsight i think it was ibs related. Anyway, i felt like sh1t for at least 7 months. Walking to the bog was enough to send me back to bed. From someone who trained up to 35 hours a week to not be able to do anything probably contributed to my stress. I was offered every drug under the sun for no real reason. Eventually my long suffering business partner literally marched me into his mates herbal dispensary and told him to sort me out. And by god he did. After some very thorough examination and history i was given a selection of topics pills and potions. Honestly, 7 days later i went back in a changed man. I've been working with im ever since and have never been better despite being back to full race and training mode. Incredible.
Wife had the same thing but different. She has been 18 months without being able to ride her bike for more than maybe 45 minutes. Tired, lethargic, grumpy. Even more so than normal 😉 She has been working with same crazy herbal man and the last 6 months have been a massive improvement. In both cases GP/normal medical route provided no real or clear answers other than my EBV and her CMV tests which were both high.
Its been a right laugh in our house 😉 Other things we did – went to an organic veg box delivery thing, removed all processed crap, drank nice wine and only good beer ! We had a good diet before but now we cook most things form scratch and have a good balance of meat, veg and fish but not obsessive. We both avoid MSG like the plague as it seems to set us both off big time.
There is light at the end of the tunnel but I would suggest trying alternative therapies.

What are EBV and CMV?

I agree with all the points about stress being a cause (and worrying about work / getting better / not training all come under "stress") and eating well

Epstein Barr Virus & CytoMegaloVirus 👿

Arghh still not better. Getting worse again in fact. I think I am going to have to see if I can reduce my hours at work. Feeling pretty hopeless that I will ever get better at the mo – doctor isn't being hugely helpful.

Has anyone else had this before? It's getting me down as I can't do any biking or other active outdoors stuff, (so consequently don't see friends and spend most of my time inside on my own) and i have no idea how long this will last.

Yup that's exactly how I feel. 🙁

Had this problem myself with the doctors. I felt that one of them didn't actually believe that my symptoms were real.

It took me a year, then I had a few good months before I became ill again.
All in all it's been on and off for 2.5 years.

It will take time. Lots of rest and eating small amounts regulary.
Read nbt's post above.

Have you had tests grumm? It's important to find out if you could be anaeimic for example. All knowledge will help.

Went to the first Bike Show in '95 and got on the train to return home to Devon. Got off the train shaking so much could hardly get the key into the car door to drive home. Somehow managed to get home. After not beliveing that i was 'that ill' until I collapsed on the floor, my wife got the doctor to do a home visit, the first since i was about 12 ( a long time ago!) Bad tonsilitus was described and i had about 4-5 weeks off work. Simply couldn't get going again.
I slowly got back to work, but about 2 months later i went back to the doctors. i was lethargic, could'nt get up in the mornings ( not me at all!!) and kept 'crashing' physically. He did a blood trawl and discovered I'd had a Hepatitus like virus and 2 liver enzyes were very low, so if liver was compromised, it accounts for lack of energy etc. We monitored it for a year ( as liver damage might also have been as a result of laboratory research/chemicals i was then using ).
Over the course of a year my levels returned, but one took a year, the other nearly a year!

I suggest you go back to the doctors and ask for a blood test and take it from there. It might simply be a viral attack, but that might well take a long while I'm afraid – but in my case I did eventually get back to normal.
best of luck my friend, I remember the 'feeling like poo' times, not nice, but be positive, it might simply just take time…..
cheers
Q

Thanks for the replies. Yup had a couple of blood tests and nothing showed up.

Thing is I had a bad infection about a year ago, and I have had a lot of colds etc and often been under the weather since then – then had a really nasty virus which hasn't really gone away in the last 2 months. Starting to wonder if I have had the post viral thing for the last year.

Getting really stressed/depressed about it and not sleeping properly isn't really helping either.

Hi grumm – like you I had a full range of blood tests, and nothing has shown up. But apparently that is quite common with post-viral fatigue.

Definately consider reducing your hours – I've been seeing an occupational health person at work, who has been great. Reduced my hours by half, stopped all travelling (of which I did a lot up and down the length of the country), and make me work through a plan of work that was absolutely essential, what could be delegated and what could be dropped.

To be honest, manging the pressures from work, and reducing the 'load' there has been easier than at home, where I have a house in need of renovation, which has now sufferd from roof damage and partial flooding!

Like you, one of the biggest challenges is getting depressed, which is tiring and draining in itself, which then 'feeds' the post viral fatigue, becoming a bit of a viscious circle. I don't have an easy answer – maybe seeing if you can explain to friends / family that this is how you feel (although to be honest I seem to have found it easer to share on a mtb forum!). I now celebrate the littlest thing that I mange to achieve thathas an 'outdoor' component to it – so a short stroll with the dog becomes as big an event as all-day biking.

Addressing it now, reducing your work hours and tackling any home pressures, will mean that you will get better soon. Just struggling to carry on will prolong things. But, you and I will both get better – maybe at some point in the future all us 'post-viral' people will end up hooking up for a ride 🙂

I was once diagnosed with PVF.

It turns out that I get flu-like symptoms when I drink orange juice or take high doses of vitamin C. Which, of course, I used to take copiously while I was suffering from PVF.

I stopped the orange juice and vit C and I got better. I still can't drink a glass of OJ without getting symptoms.

A lot of people I've spoken to have had a few things happen to them which seemed to bring on the fatigue.
For instance in my case we moved house, which, like you Sue was a building sight, I moved work premises not at all helped by suffering with a frozen shoulder this was all at the same time. In one book I've read and speaking to other people, it's as though your body shuts down a bit because too many things are happening to it and the stress levels are way too high.

I caught swine flu in August and didn't really know I had it, due to the symptoms being pretty much like the fatigue syndrome. It was only when I started to shake with cold and had my temperature taken that we knew I'd contracted.

For people that have never experienced fatigue, it's infuriating to be a sporty or outdoors person, then suddenly you can't physically do the simplest of tasks.

All the best to those who are still suffering, mine is sort of in control, however I'm dreading the cold/flu season where my low immune system seems to throw everything at me.

Sue I'd love to come on a PVFS ride, in the future.

After pushing myself to the max in Nepal in June, I returned to the UK with some kind of flu type virus which took close to a month to get over. Had already planned to do the Raid Pyrenean at the end of August but due to a lack of energy/motivation wasnt able to do hardly any training for it. Went and did it anyway but since then have had 2 bouts of flu and the slightest bit of exertion leaves me absolutely knackered.

Went to see doctors, who did a blood test, which showed up some "abnormalities" and they told me if I still feel ill in a couple of weeks to go back for another test.

In the mean time Ive been to see a kinesiologisr (which seems like a bit of hocus pocus!!) but she reckons I have adrenal fatigue, bought on by years of strenuous exercise, physical hard work and inappropriate diet and bought to ahead by the Nepal ride.

She has recommended some tablets to "kick start" the adrenals and also some (lauric acid) to fight any viral infections that may be lingering in the background and a fair amount of dietary changes.

Into my second week now (unfortunately had a bit of a set back by poisioning myself with raw kidney beans!!) so a bit early to tell but I reckon I do feel marignally better.

I know alot of people are sceptical or scsthing of alternative therapists but I dont have much faith in doctors being able or wanting to treat this kind of ailment so have looked elsewhere for help.

Hope you're on the road to recovery shortly.

skiprat have you been checked for allergy to aspirin – my friend gets random tongue swelling and it turns out she is sensitive so some natural aspirin product that's found in many common vegetables and fruit.

Just interested in updates to see how people are doing.

Addressing it now, reducing your work hours and tackling any home pressures, will mean that you will get better soon. Just struggling to carry on will prolong things. But, you and I will both get better – maybe at some point in the future all us 'post-viral' people will end up hooking up for a ride

Sounds good yeah, I really hope I will be able to one day. 🙂 I have reduced my work hours and taken away some of my more stressful bits, which has helped reduce the worry. Still been very low/depressed in the last few weeks, but feeling a little more positive right now.

Went for a 2-3 hour walk in the Howgills recently, and while it completely knackered me and left me very tired for most of the week, I didn't get really ill again, so I guess that is encouraging.

Haven't tried biking again though – the last time I tried (a while ago) even what I thought was very gentle biking it seemed to really knacker me and left me feeling awful. I think you naturally will try and push yourself a bit even trying not to.

Hello All,
I've been reading these posts with great interest as I have been off the bike for 13 months. I have CFS/ME but was originally told i had PVFS. I found the NHS all but hopeless in dealing with this and so have undertaken a lot of my own therapies to help matters. It really is a shell-shock going through it all and it does rob you of most of the things you enjoy out of work, such as skiing and taking on some lovely UK singletrack.

My story briefly was that I worked on a very difficult project for some 2 years, it was under resourced but and so I just did more and more but kept up my training and weekend rides. So very long and stressful weeks at work and no rest as I wanted to keep my own life going too. Eventually, during a Xmas break, i just basically ended up sleeping for a fortnight and never recovered.

I had to start working up at work again from 3 hours per day to what I am doing now, some 11 months later, 5.5 hours per day. I have to rest almost all the time out of walk and have to manage any activity i do with great care, that includes watching a movie, reading or even socialising. Thinks are improving very very very slowly but improving nonetheless.

Here's what I am doing:
1) I got to the Perrin Clinic in Manchester
2) Have undertaken a nutritional programme from the Optimum Health Clinic
3) Lot's of relaxation tapes
4)Going to the Optimum Health Clinic to learn some techniques for improving recovery. Some CBT and NLP.

The NHS have a clinic for ME but I've been on the list 11 months already and not had a letter yet.

It's really tough, especially when you see people out and about on there bikes, or going past you on the motorway but I remain positive that in the long term, thinking at least 2 years, probably 3, I might be able to ride the likes of Glentress and Kirroughtree again.

It really is about managing your energy levels, both physical and cognitive, unfortunately.

I'm not suggesting any of you have ME or nor should you undertake any of the treatments I have, there's a lot of hokum out there on the subject and I might just be buying into some of it, so please don't take my plan to be a solution. I do know I'm improving though, little by little.

Good luck all! Hopefully we'll all be back out on the trails again someday in someway?

I have CFS/ME but was originally told i had PVFS.

Hey thanks for your post. I'm interested in this – I was initially told I had PVFS but now they seem to be talking about CFS. No-one has mentioned 'ME' to me but it seems CFS/ME are interchangeable terms? I don't seem to be able to get a straight answer on this as it all seems to be very hazy and unclear.

I am very slowly learning to accept that I have got this (whatever it is) and that I have to make big changes to my life in terms of learning how to manage it. Apparently you go through phases of dealing with these things and I have definitely been in the denial and anger phases until very recently.

I have also been deeply depressed, and am now on medication and attempting CBT therapy which seems to be helping a bit. Have to say the one saving grace of all this is it prompted me to buy a new camera and develop my interest in photography – actually makes my life feel slightly worthwhile again after having to basically stop doing all the hobbies that used to be my main passion in life.

I believe they stopped calling this illness ME. because there is no such thing, that's why you don't hear it anymore.

I too am in my 3rd year, realising last year that I was in it for the long term.
Having an understanding, supportive partner or close friend, maybe even a family member is a must.

There have been whole months during my recovery where I have been able to bike and more or less do normal things. It's just a shock when the fatigue comes back and I'm struggling again ( which is at the moment).

Get plenty of sleep.
Snack in between meals, things like oat cakes, high energy bars etc.

Good luck to everyone suffering, I'm highly optimistic this will be recognised one day as a proper illness, then hopefully more people will understand it and not dismiss it as 'yuppy flu'.

Good luck to every one out there.

Bit of an update from me – had a really difficult time until probably mid-January. After having thought I was beginning to manage it with reduced hours at work etc, we then got the builders in at the start of November, which took away any possibility of having a rest in the afternoon and added loads of stress. this was made much worse by the really bad weather we had up here in the mountains with storm force winds and torrential rain for about 6 weeks. The end result was exhaustion, but worse of all really bad anxiety attacks and not being able to cope with anything.

Really glad now that things have stablised, and I feel optimistic and have some energy again. Have started bouldering at my local climbing wall, which I've really enjoyed as it's sociable and you can do as much or as little as you like. The difficulty I've found with continuing to mountain bike is that I no longer have anyone to ride with as I can't keep up. Oh, and I've got into some non-competative road biking, so am now planning sunny tours in france for the summer.

I've no idea if this means I'll be on a steady upward trajectory from now on, or whether I'll continue with ups and downs. But right now it's one hell of a relief to be feeling ok again 🙂

It has certainly made me consider making some changes in my life to try and reduce stress and exhaustion. We can't control everything (like the weather!), but I've been learning that it's OK to think 'actually I want some parts of my life to be easier', and that doesn't mean you're weak or anything. So, for those of you who are struggling, if there are aspects of your life that you can alter, even if it takes a while to do so, then make sure you do so that you can start enjoying yourself where you can!

this has been an interesting thread that I didnt pick up on 1st time around. Currently on my 4th cold this year – I literally felt one finsih on a sunday and by the monday evening a sore throat and cough started – a week later, I have just spent the day in bed with a low grade fever, phlegm and inflammed eyes (symptoms my kid had who I catch everything off). This thread has got me thinking aobut my situation – where I am catching everything under the sun, constantly knackered despite eating well, going to bed say 11pm-7am every night. When I just did some quick research/reading, earlier this evening, one thing that struck me was the phrase 'unrefreshing sleep' (think it was on the PVFS wiki) – thats me to a tee – I can sleep well and deeply, but I will wake up in the morning feeling tireder than the night before…just wondering if anyone else can relate to this as a symptom?

Good thread, got me thinking and knowing I cant carry on with the way things are.

When I just did some quick research/reading, earlier this evening, one thing that struck me was the phrase 'unrefreshing sleep' (think it was on the PVFS wiki) – thats me to a tee – I can sleep well and deeply, but I will wake up in the morning feeling tireder than the night before…just wondering if anyone else can relate to this as a symptom?

Yup I totally relate to this – can't remember the last time I woke up feeling 'refreshed'.

Really glad now that things have stablised, and I feel optimistic and have some energy again. Have started bouldering at my local climbing wall, which I've really enjoyed as it's sociable and you can do as much or as little as you like. The difficulty I've found with continuing to mountain bike is that I no longer have anyone to ride with as I can't keep up. Oh, and I've got into some non-competative road biking, so am now planning sunny tours in france for the summer.

That's really good to hear, well done. I am managing the odd reasonable length walk – it's funny in a way, I can feel how weak and unfit I am at the moment, but going out for a walk with some people from work I am still probably fitter than most of them. 😆

I have really struggled though with trying to make plans to do stuff with other people, as I often end up cancelling as I am not feeling up to it, which makes me feel like I am letting people down etc and stresses me out. I could probably manage a gentle mtb ride but I would feel funny about going out with someone else really, and I don't fancy it on my own either!

My father had a post viral type problem about 20 years ago, probably related to a liver/hepatitis problem that he'd likely contracted through his work as a nurse on a gastroenterology unit. He found he'd simply make a judgement call each morning based on how he felt, and take the day from there, sometimes he was right, other times he wasn't. Not an accurate way of doing it but he has always been stubborn and not the kind of man to let things slow him down.

My wife has also had a CFS type problem just before we got married. Bloods showed a likely EBV/glandualr fever type problem that she tracked back to a tonsilitis type problem when she lived in Germany in 1992/1993. Still now gets recurrent flu type illnesses 2-3 times per year, and burns out with work related stress very easily. Situation not helped by 3 1/2 years of post natal depression after birth of son in 2000. She doesn't/can't predict how she is going to be at any given time, even been like this on family holidays, so my thoughts are stresses are a key trigger for her. Of note is that she had swine flu last summer, and she feels that her symptoms have been less marked this past winter, depsite mega stresses at work and at home.

Very wierd & complicated condition that is truly unique from individual to individual.

Like doc_blues I too missed this first time around. It makes for very interesting reading as I have been suffering with something similar for the last 6 years.

My illness came on after a weekends riding in Wales and since then I have never been able to achieve anywhere like the level of activity that I once did.

My overriding symptom has been fatigue and flu like symptoms, (i.e. sore throat, aching limbs/joints) and unfreshing sleep. Plus like many others, I appear to be have become very suscepitble to any viruses and illnesses that are going. I also have to be very careful not to overdo things, as either working too hard or exercising too much brings my symptoms on.

Whilst my GP practice has been sympathetic, they have not been that proactive in persuing the CFS route. Initial diagnosis was that I had had a virus. After numerous visits back to the GP, I eventually had a whole raft of blood tests. Which were all negative.

I was also tested for Lymes disease (twice), as living in the New Forest makes that a likely possibility. But both tests were negative. (Interestingly a friend of mine had a similar set of symptoms to me around about the same time. We had both lived in France and had spent a fair bit of time in the mountains there. He was suspected of having Lymes).

Like some of the other posters, there have been periods where I have been able to exercise quite hard, but my symptoms always return within a few weeks.

It has been hard to come to terms with not being as fit and active as I was, but at least I can still work. I think the most frustrating thing is not having a confirmed diagnosis. Even if I definitely knew I had CFS, there is no real treatment, but it would be nice to know that I am not making it all up!! On several trips to hospital, I could tell that the hospital staff thought I was a timer waster.

Interestingly when I was at the GPs this week with yet another sore throat, a new GP (after having read my notes) asked whether I had ever seen a CFS specialist. So who knows?

Having lived with this for 6 years, I would really recommend that you push your GP hard for help as early as possible.

Like many of the other posters, I have learned to manage my life to minimise the symptoms. However, more often than not it means that my sports/hobbies suffer just so I can have enough energy to work.

Wow- FieldMarshall, you have just summed it all up beautifully.

Gosh 6 years is along time. I suppose in that time you've just learn't to live with it and hope that when the 'good' weeks come, you make the most of it.

Apologies for the long post got a bit carried away!

6 years has been a long and frustrating time, but nowhere near as long as some and nowhere near as bad. I have been lucky enough to be able to still work full time (is that lucky?), although I have had a lot of sick leave. I am also still able to exercise as along as I am cautious and listen to my body. But it is still frustrating that I only seem to be able to stay well for a couple of weeks at a time.

As you say when the good times come you make the most of it, always hopeful that the symptoms won't return. However, i am my own worse enemy and normally overdo it.

It's pleasing to know that my new GP believes that there is some mileage in re-investigating CFS and even possibly sending me to a specialist. However, looking at their website the main treatment appears to be "lifestyle management", which is effectively what I have done for the last few years anyhow. So apart from getting some kind of firm diagnosis (if that is 100% possible with CFS) I don't see there is much to gain.

I really feel for anyone who has experienced anything similar to me and hope you recover to full health soon.