Post viral fatigue

This is great news that so many of you have ‘turned a corner’.

I too believe that all doctors think that it’s depression that CFS patients suffer from, however it’s that very fatigue that can cause the black lows.

Can I add my best wishes to all who suffer and to keep up with the good diets, small amounts of exercise and keeping faith in yourself that you will get better.

Seems to me that at least one of the doctors you have seen has done what’s best for you (but perhaps not what you wanted) in listening, doing all reasonable tests and setting you free from medicalising this.

First do no harm…

Thanks Cinnamon Girl; I will check that out.

Exactly Mboy, anyone who thinks its “just depression” is seriously deluded, and I have no time for.

Depression on its own isn’t to be sniffed at, it drives people to suicide.

People who haven’t had CFS don’t know what it feels like, and I suppose you can’t expect them too.

When you have the flu, you know you will feel like crap for a week or two, but after that you will be back to normal. Its no real worry.

With CFS there is no end (at least you think at the time), the doctors you usually turn to for answers have none, your life has changed over night and you feel seriously helpless. That is enough to make anyone depressed!

There are some positives that have come out of it for me though. I have learnt a lot about myself, the human body, illness, nutrition and photography 😉

Edit: I’m still not out of the woods yet though, but touch wood I will be.

Like Bunnyhop said, don’t give up hope.

It started off so well…

I just changed doctors and this one seems really good and actually wants to help me get better. He phones to ask me to go in and see him, he never forgets anything like my symptoms or our conversations.

Someone said:

Just having a doctor that remembers your name and all your symptoms instills a massive amount of confidence, and stupid as it sounds, this could even be the catalyst to help you get better! It helped me a lot, and that he was prepared to try as many different methods as possible to help me get better too.

To which you replied:

You are definitely right there mate, as soon as I changed it was a HUGE relief knowing my health was in the hands of someone that actually gave a shite.

Then…

The blood tests came back fine (surprise, surprise)

And finally…

I have an appointment with the doctor tomorrow, the last time we spoke he was basically telling me I either have anxiety/depression or CFS, I couldn’t give a shit what he calls it to be honest, I’m doing fine on my own, they haven’t helped one bit.

What changed and what exactly were you expecting?!

The illness causes depression, rarely the other way round.

The IDU was a big breakthrough as they run a mass of tests to see if there is pathological reason for the symptoms, as has been mentioned, the symptoms are not specific, and some of these illnesses can lead on to M.E. as it did with me.

I have not read all the thread but I will pass commnet on this.

I too believe that all doctors think that it’s depression that CFS patients suffer from

I know that is not true however I am certain there is a strong psychological component to it and that it is not one illness but a series of things.

I have had CFS all my adult life but it does not stop me from doing things. I do have to watch for getting overtired and going into a fatigued state which can take weeks to recover from. I believe mine is lyme based from the 70s when I had a tick in me for days – a dead tick at that after much messing about trying to get it out.

Clearly I only have it to a lessor degree than some but I am convinced a part of this is down to my attitude. I refuse to let it stop me doing things
sometimes I drive myself on with stubbornness and willpower but I can only do this so long before going into the deeply fatigued state

I have many the classic symptoms such as night sweats, inflamed lymph nodes, muscle aches and if I do too much I do become excessively fatigued.

Its not something that can be tested for with the current state of medical science – I have had all the tests over the years. Nor is there any treatment beyond CBT, graduated exercise and rest as far as I am aware.

So dealing with the psychological component is the best that can be offered by a GP. this is not the same as saying “its all in your mind”

jb79 – I have written what I’ve felt at the time. If you are here to pick holes in what I have said then don’t comment, I can’t be arsed with negative people – no offence

As a GP who works hard to support and help and guide people with CFS/ME/Lyme’s etc (and who has tried to provide some help to you on this thread) as best I can given the available evidence I take some offence at how critical you’ve suddenly become when you didn’t get the answer you seemed to want from your doctor. I’m genuinely interested why this happens so often. We don’t know everything but to slag us doctors off for no apparent reason seems a bit shitty TBH.

This sort of stuff also feeds the negative attitudes many doctors have re CFS/ME/Lyme’s patients and doesn’t do anything to help your fellow sufferers.

In all medical encounters there comes a point where the potential to do good is outstripped by the potential to do harm (with medical tests and treatments) and the best doctors recognise this whilst not failing to communicate it to their patients.

T.J. – I wish we’d had chance to discuss this when we met up a while ago. (its one of the reasons we have a tandem :-))
In my experience GPs want to palm you off with anti-depressants because in their eyes the patient does come across as depressed.

When I was first diagnosed (after many tests) I broke down in the surgery. 2 reasons, first was that I knew it wasn’t something terminal and secondly I knew I was in for the long haul.
You have the perfect personality for coping with this, I agree that a good attitude and way at looking at lifestyle helps.

I accept that doctors are human and can’t really understand this type of illness, how can they when I don’t understand it myself.

What will probably and hopefully happen now is you’ll learn how to manage this yourself and drag your way out of it and be equipped to identify early and see off any future relapses. The alternative would be ongoing contact with risky and unpleasant medical procedures as well as the ‘being ill’ (the sick role) that repeatedly going to the doctors’ promotes, at least psychologically. Your doctor may well have saved you from that, he sounded from your initial posts like one of the good guys…

p.s. what TJ says is on the money.

Keep in mind too that seeing patients with CFS and the mood disturbances it brings is bloody hard work – you guys don’t tend to make easy patients. I say this as a patient (EBV infection, PVF 5 years) so don’t think I’m unsympathetic.

Just seen this. I had similar symptoms a few years ago, felt really tired but I also had bodily pains including chest pains and head pains. I had a lot of tests done but they all came back ok, such as a chest xray, ecg, bloods and so on. However because of the symptoms I was experiencing I thought there must be something major wrong with me. It was a scary time to say the least.

However to me it was this belief that something major is wrong with me that kept me analysing my situation, whereas the underlying cause was anxiety. To be fair to my doctor she said prety immediately it is anxiety, especially after the first hospital tests were done, but I didn’t believe her if I’m honest. Unknown to me but all the analysing I did was just fuelling the anxiety and it just keeps on coming.

The way I got out of it was to stop anything to do with trying to resolve the situation, basically stop analysing how I was feeling. It will take time to go, but it will.

Bunnyhop – feel free to contact me via email if you want.

You have the perfect personality for coping with this

Stubborn? 🙂

I am not diagnosed by anyone but myself – partly ‘cos I know it won’t make a fig of difference and partly because my symptoms are not severe

Flow – I understand the frustration that the doctor cannot offer you cure – or even a reliable label – after all CFS simply means “you are tired a lot and we don’t know why”

Thanks T.J.

Some crossed posts – its not all in the mind but the mind plays a large part – as does the attitude you adopt. I will not play the role of the patient, the sick person. I have met people who did and they were forever off work, at the GPs and so on despite what appeared to be symptoms no more server than mine. Of course as the main symptom is how you feel it will always be subjective and very hard to assess.

Because the mind plays a large role antidepressants and CBT have an affect- more so in some folk than others.

Sorry JB, I actually forgot you posted previously, I thought you were just some random person picking holes. I appreciate you trying to help.

I was really on about my first doctor. I was seeing her for 4-5 months and like I said before she was extremely unhelpful.

I’m not bothered what my present doctor calls what I have simply because I have done so well on my own. A label isn’t going to help me out.

Appreciate the apology, thanks.

Modern medicine does a lot of good but it can do awful harm too. Knowing where the crossover is is really the art of medicine IMO and it’s difficult not to overshoot.

You’re doing exactly what you need to by the sounds of it – change something (adapt), monitor, feedback, repeat. If you’ve not already have a look at cure together and patients like me for ideas of other stuff you can try. One further bit of advice if I may – only see your GP now if you have very specific things you want to achieve, e.g. a particular prescription, etc.

How did you manage to get over it if you don’t mind me asking?

I agree it is partly psychological, I have been doing a lot of nothing, relaxing, and staying out of the way of anything stressful which seems to have also helped.

Flow – perhaps adopting the “bullheart” attitude?

I hesitate to say too much ‘cos it gets awfully close to MTFU but in some ways I think you need to deny its existence and refuse to accept the limitations

Jeremy – its that attitude that got me into this situation in the first place.

Too much stress; mental and physical (exercise), illness, and not having any of it is why I am where I am.

Flow – not quite what I meant. You need to avoid the triggers especially stress – but at the same time yo need to deny the CFS the ability to impact on your life. Its a mental not physical step. its not about doing all the things you want to do but its about using the power of your mind to be positive and to minimise the symptoms

Thats what works for me. But as I say its IMO not one illness but a collection of things, different things will work for differnt folk and my symptoms are mild

Ahh sorry, I misunderstood.

I understand now.

How did you manage to get over it if you don’t mind me asking?

Not sure if you’re asking me?

In short, really f***ing slowly!

It took me a while to realise that I had some positive (in a negative sense!) feedback loops going on (i.e. vicious circles)- in my case these were:

Lack of exercise -> fatigue / restlessness and anxiety -> exercise -> fever (almost every time I exercised) -> insomnia + fatigue for a few days -> off work or tired / disinterested at work -> grief from work (if you want an employer unsympathetic to ill health try the NHS!) -> stress – > anxiety + depression -> poor diet -> worse fatigue -> low motivation -> and back round again to some point in this unhappy circle…

[Too complicated to diagram in a post but hopefully you get the idea]

Once I realised this I started chipping away at the various bits of the loop as best I could (using conventional stuff that helps those bits, e.g. paracetamol and ibuprofen regularly for 24 hrs post exercise to prevent fever (which eased the fatigue too), very slow and frustratingly short exercise sessions, mindfulness / CBT, slowly building up, dealing firmly with work, eating healthier stuff, setting goals (to improve motivation) and so on.

What I found is that none of this made a huge difference initially but tracking objectively things like mood and fatigue levels helped me see progress when in the moment I didn’t really feel any (I still felt shit just not quite as shit as last week!). What happened eventually was that (presumably because one thing was feeding another) I reached a critical threshold were suddenly things got better.

Your feedback loops will be different but I suspect they’ll be there.

Thanks JB, I was asking you.

I understand exactly what you are on about with the loops, luckily I realised this was happening pretty early on and did nothing/as little as possible to stop it.

I think I am on the right track, hopefully, although I am very apprehensive to start exercising again, because thats what made me really bad! Im not sure how I am going to tackle this. Probably slowly, like you said.

I did an hour on the turbo trainer about a month ago at HR level 2, BIG MISTAKE! My legs where like lead for 2 weeks solid, they felt full of lactic acid? I ached so badly all over.

Saying this I am really looking forward to riding my bike again.

Flow, how often do you read or research your condition? Remember that this fuells the condition. Mayby try and accept the doctors diagnosis, accept youll have these strange symptoms for a while, but 100% stop reading, analysing, seeking reasurrance about your condition (visiting doctors). See how you feel in a month? To help get by find a few hobbies to take your mind off how you feel. This is how i got better.

I did an hour on the turbo trainer about a month ago at HR level 2, BIG MISTAKE! My legs where like lead for 2 weeks solid, they felt full of lactic acid? I ached so badly all over.

Try Rating of Perceived Exertion (Borg Scale) instead and stay low. It’s so frustrating initially.

Flow, how often do you read or research your condition? Remember that this fuells the condition. Mayby try and accept the doctors diagnosis, accept youll have these strange symptoms for a while, but 100% stop reading, analysing, seeking reasurrance about your condition (visiting doctors). See how you feel in a month? To help get by find a few hobbies to take your mind off how you feel. This is how i got better.

Alot of truth in there – it’s part of it for most people I reckon. Some can switch it off (I couldn’t), others need to refocus their attention on things that help rather than hinder. Self-tracking which is objective can help people do that. Flow sounds like he’s already refocused and is making progress.

Im a good few months into that now xcracer, you’re right it helps.

Analyzing/researching makes it a lot worse but its just human bloody nature to want to know what wrong when you feel so bad.

I have really got into photography whilst I have been feeling “off”, which has also helped.

Edit: Thanks JB, I will try that.

Flow, how often do you read or research your condition? Remember that this fuells the condition.

I found the opposite. By understanding what was happening to me, communicating with others in similar positions, and working out how to move forward with knowledge I have gained has made a massive difference.

Weekly update Flow? How you managing?

Currently struggling not to dip back in myself, been having a bad last few days, can feel the tiredness creeping back in and depression trying to take a hold again, desperately trying to shrug it off! This is the first time for me in almost 3 months though, so fingers crosses I’ll be alright.

Don’t worry, stay positive Mark. I’m sure its just a dip as you’ve had a lot in your plate recently. Take a bit of time to chill and relax.

Well I got back on the bike (properly, not with my wee lad) for the first time in 7 months on Friday, and commuted 5 miles into work and 5 miles home again. Felt fine at work, but quite tired on Friday evening and Saturday. I haven’t been suffering mentally other than huge frustration, but it was hugely positive to be back on the bike on a beautiful Edinburgh autumn day. Just going to give it a go one day a week at the moment, and see if I can build it up gradually from there.

If it helps I’ve been working with a personal trainer and he’s got me working aerobically (Under 142bpm for me) and I’m finding that I don’t get that tired in the days after as when I was just riding and going anaerobic.

When I ride anaerobically I’m finding I get pay back on the next few days.

It sort of falls in with the Fifth stage here…

http://www.drmyhill.co.uk/wiki/Pattern_of_recovery

Weekly update 😕

Last week I was sleeping so well and the aching was pretty much gone! I actually felt normal for about 3 or 4 consecutive days. I was planing to go back to college yesterday.

This continued till Sunday when I took the kids to my brothers for a Halloween party. While I was there I ate some cake and drank some ginger beer! Bearing in mind I haven’t had sugar, gluten, or lactose till then, I thought I would try it out.

Another bad move!

Sunday night I had almost no sleep, and yesterday I ached so badly.

I didn’t get much sleep last night either, but today the aching has died down slightly.

I’m hoping I haven’t fecked up to much and maybe tonight or tomorrow I will get some sleep, hopefully recover and get back to how I was last week.

Sooooooooooooooo frustrating! I really wish I didn’t eat that shite, but it did taste good.

I hope you get through this rough patch Mboy, PMA (positive mental attitude!!!)

While I was there I ate some cake and drank some ginger beer!

Ummm 3 cakes fatboy 🙂

Two, I didn’t eat the third one, its in the kitchen.

Flow – its only a dip. All part of the recovery / learning process 😉

Yeah you’re right mate, I wont be doing it again that’s for sure.

Thanks for your email the other day.

This isn’t exactly relevant…

Gulf War Syndrome: A lot of questions, few answers

… and it has lots of annoying red text in it, but to those who’ve had to deal with these things it’s very interesting.

Well I’m nearly back to how I was before the slight dip. Hopefully I will start to improve further.

How is everyone else doing?

http://www.livestrong.com/article/205811-adrenal-repair-diet/

Loads of links in the related to read too, I think its pretty relevant for CFS sufferers.