Post viral fatigue

No other group of patients researches their illness and spends as much time discussing it to quite the same extent as people with CFS/ME/PVF, Lyme disease (where there’s no tick bite seen), total body candida (typically pronouncing it can-deee-da), etc

You might want to include thyroid conditions in there too seeing as, ime, GPs are very keen to write out a prescription for ad’s.

Oh and a patient satisfaction survey from the practice too might help to get rid of the GPs with the lazyitis virus.

You might want to include thyroid conditions in there too seeing as, ime, GPs are very keen to write out a prescription for ad’s.

I take it you’re talking about people with hypothyroidism treated as depression without blood tests being done first? That’s a simple cock up, a missed diagnosis, not a complex condition. It happens, and as I said other stuff gets missed too and patients pick it up after some internet research, but seriously nobody does research quite like people with CFS etc. Being very analytical seems to go with the condition and as I also said, I have wondered whether it might fuel it. One way to help yourself is to use that analytical mind for good – formalise the trial and error. CFS and its siblings are conditions with no silver bullet (at least not yet and I suspect not ever).

I agree TFTs should always be done pre- or soon after antidepressants are started by the way. I’d also say most antidepressants are a waste of time for most people but quite a few patients come in to get them and they give doctors a quick and easy route out of a ‘heavy’ consultation.

Oh and a patient satisfaction survey from the practice too might help to get rid of the GPs with the lazyitis virus.

They tend to have their followers though and most rate their GPs very highly whether they’re good or bad. Of course there are lazy / shite GPs out there (we’re humans after all) but honestly, the constant doctor bashing at the moment is seriously unhelpful and demotivating to those of us who do give a shit.

LOL, same old answer that everybody gives that’s never properly had to deal with somebody close to them with CFS/PVF/ME in their life.

Lol, but just mayby I do know someone very close who suffered, and once they chose to stop worrying/analysing/discussing their condition they improved and made a full recovery. Anyways Im out.

I take it you’re talking about people with hypothyroidism treated as depression without blood tests being done first?

The Royal College of Physicians directs GPs to carry out one blood test which is supposed to determine a thyroid condition. In practice it sounds simple – if the level is over x then you have a thyroid condition. If it’s under x then you don’t … so I am not going to listen to your symptoms.

The very people that are having to fight to be listened to are the very people that don’t have the strength to do that.

Please … I’m not doctor bashing having just spent 3 days in hospital last week after coming off my bike … I’m fed up with not being listened to!

Mboy – the only way the AD’s have helped is they get me to sleep, I’m not depressed, although I think they also might have calmed me down a bit as I was starting to worry what was up with me as I have no diagnosis.

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. The last doctor couldn’t even remember my name, let alone symptoms, and it was obvious she didn’t give a shite.

Are you on the mend now then? How long have you been suffering with the bastard thing this time? Once is bad enough, let alone twice! I feel for you dude.

One way to help yourself is to use that analytical mind for good – formalise the trial and error. CFS and its siblings are conditions with no silver bullet (at least not yet and I suspect not ever).

Very good point.

I’ve got a very naturally analytical mind, and when somebody tells you you’re ill but they don’t know what it is or what’s causing it, you do go about searching for answers. I did put my natural CI training into effect though, and started doing some root cause analysis on my problems and the effects, and started to eliminate the things that seemed to make me worse, and focus on the things that make me better. If you’re going to sit reading wikipedia and focus on the negatives, it’s obviously going to be a massive downwards spiral, but 2nd time round I decided to get better the only way I was going to successfully do it was to shut out any negatives in my life, and focus on all the positives and spend time making them happen.

I just changed doctors and this one seems really good and actually wants to help me get better. He phones me to ask me to go in and see him, he never forgets anything about me, like my symptoms or our conversations. The last doctor couldn’t even remember my name, let alone symptoms, and it was obvious she didn’t give a shite.

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.

Are you on the mend now then? How long have you been suffering with the bastard thing this time? Once is bad enough, let alone twice! I feel for you dude.

Struck down beginning of April, so just over 6 months ago. I’d say I’m about 80-90% better now. First time I had it, took me 6 months before I was happy really even leaving the house, so recovery has been quicker this time. Part of my speed of recovery I’m attributing to no matter what, I made riding my bike the most important thing to me. So I’d sacrifice pretty much anything to make sure I got a ride in each week.

The single biggest step change I found though, and this is quite personal to me, has been having something to focus on, a positive influence in my life. You NEED to be able to be positive about something, and having discussed this at length with bushwacked, I can see why different methods work for different people. His theory about Gupta makes good sense, it might not be for everyone, but if it helps you to be positive then all good. Same as the lightning process, I totally poo pooed it at first (and to be honest I know it wouldn’t work for me still as I’m too cynical), but if you’re the kind of person that can find positivity in that way it could be money well spent. I’m not, so I knew I had to find some positivity for myself… I’ve gone back to uni, to do a Music Degree, something I’m totally passionate about, so now I live for studying and riding my bike and I’m bloody loving it! Only small problem is the fact I’m skint, and that’s probably going to be the way it is for the next several years too, but money ain’t everything…

Oh, and one thing you MUST remember that I didn’t realise after the first time I recovered… I thought I had dealt with CFS, and that meant it was out of my life… WRONG! As someone who has suffered with it, you are very susceptible to a relapse providing the conditions are right for it to return. So now I’m going out of my way to make sure those conditions don’t happen, removing negative influences from my life, focussing on goals that will make me happy (without being too unrealistic as they have to be semi-attainable), and generally not beating myself up for being who I am right now. I found that just giving myself a break for not being as successful as I wanted to be by the age I am now (31), has helped loads! It’s all about taking the positives out of every situation… Happy Clappy sh*t if you like (like the lightning process) works for some, but for me I just go about it my own way…

Like I said mate, email is in my profile…

The Royal College of Physicians directs GPs to carry out one blood test which is supposed to determine a thyroid condition. In practice it sounds simple – if the level is over x then you have a thyroid condition. If it’s under x then you don’t … so I am not going to listen to your symptoms.

Fair enough. Humans are incredibly complex and poorly understood, the problem comes when we pretend otherwise. Not listening is inexcusable.

EDIT: P.S. Why does an illness always have to have a cause, like a dodgy thyroid or a virus or whatever? Could illnesses not be complex in origin? The dogged pursuit of a cause is fraught with difficulty and danger…

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.

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.

Because riding my bike, or any exercise makes me ache for weeks, I have really got into photography and have recently started a btech at college. At the moment because my sleep is so awful I have been missing a few days, but I have asked if I can do the work at home when I’m not up to going in, this has taken my mind off it no end.

Its good thet you have made a speedy recovery this time, I got ill a month after you did and have only just started getting better, but I WILL GET BETTER! I am going to keep telling myself that, there is no way this is staying with me forever like it does with some people, nooooo chance.

I have just been reading Dr Myhills site, some very interesting reading there, I will be following a lot of that info from now on.

Like I said mate, email is in my profile…

Thanks mate, my memory is so shite I forgot you said about it the first time.

Wishing good health to bushwacked, mboy and flow. 🙂

EDIT: P.S. Why does an illness always have to have a cause, like a dodgy thyroid or a virus or whatever? Could illnesses not be complex in origin? The dogged pursuit of a cause is fraught with difficulty and danger…

I believe they are complex. For example, during the last 3 years I have experienced most of the top 10 most stressful life events. This year I have seen the harrowing death of my father, my mother in hospital for 2 months, moving house to a new area, falling off my bike and possibly surgery required.

Actually what is keeping me going is whilst I was in hospital, there was a young guy who had been beaten up. He was in a wheelchair and had brain damage. He was in his 20’s and his life was effectively over. Puts everything into perspective.

Thanks. You’re right too, when you think you have it bad, it can pretty much always be worse!

Thanks, Doc.

Do people know that those with CFS / ME are now barred from donating blood? Not that there’s anything wrong with their blood, no, far from it… it’s to protect the would-be donors from damaging themselves.

My email is barnt at hotmail dot com

I firmly believe that the anxiety around the condition causes the symptoms, both physical and mental. I looked up the effects of over production of the stress hormones (adrenaline / cortisol) on the body and it read like a list of my symptoms. At that point I worked to relax and distract myself from over analysing how I was or how I felt or what was happening to my body, plus taking sleepIng aids, and it has greatly helped.

Had an awesome ride yesterday!

The single biggest step change I found though, and this is quite personal to me, has been having something to focus on, a positive influence in my life.

Mboy that is exactly how I managed to get over the worse bit of being ill.

Bushwacked – I also agree with you about anxiety. It can become a vicious circle. Its not always easy though to walk away from the very thing that can cause these worries in the first place.

Totally agree, anxiety and worry is a tough one to overcome.

Thanks Bushwacked, you are right about the anxiety. I didn’t think I was an anxious person before this happened.

May I ask what sleeping aids you were/are taking? I have just ordered some melatonin, I have some valerian and am hoping to change my AD’s to amitriptyline on Tuesday. I find not having sleep makes me 10 times worse, both mentally and physically.

Sleep – I found that just chilling out at least an hour before bedtime. This means no computer. Maybe reading a book and definitely no alcohol.
No food either for a few hours before bed, sometimes a warm bath.
Just simple things really.
Oh what fun we all have 😉

Thanks bunnyhop, I have tried all the normal rituals and none of them work for me 🙁 When I do finally get to sleep its like Im in that 1st daydream faze before you drop off properly and never get deep asleep. I always feel like Ive not slept. It sucks hard.

The AD’s were working for sleep, but Ive got used to them now hence me changing.

I find wearing my favorite smoking jacket and enjoying some mozart really helps me 😉

Flow – I got your email, will reply later once I’m back from work – bit mental at the moment. Half year review today and not prepared 😯

If you’re reading books, make sure its a good fiction book – I’ve found non-fiction doesn’t help, even some auto-biographies. You need a good story to get lost in. (Thirteen Hours by Deon Meyer is awesome by the way)

Nice one mate

its like Im in that 1st daydream faze before you drop off properly and never get deep asleep. I always feel like Ive not slept. It sucks hard.

I know that so well!!

I know that so well!!

Its a strange one. You body is shafted and really needs some proper sleep, but it wont let you. To me its one of the worst symptoms, just because it can make or break a day, or even week if you have a few bad nights.

Folks
Thanks so much for all the above, what a good thread.
I’m suffering with PVF, and have been since early April. I was training for an Ironman, so was keeping an eye on my fitness levels. I started to get slower week on week, and I (mistakenly) kept up the volume of training if not the intensity, in addition to a 12 mile round trip bike commute each day.
The virus then got bad. Horrendous night sweats, generally feeling ropey and worn out, and then latterly chest pains. Off to the docs and a virus was diagnosed – blood tests showed that it had impacted on liver function but then returned to normal. Chest pains/pericarditis stopped as soon as I stopped exercising, and ECGs were fine. I was feeling breathless – x-rays of my chest came up clear. Absolute rest prescribed. And that was April time. I’m basically left with a permanent breathlessness. In the spring it would wip me out to run upstairs or to chase my wee lad on his bike. It’s better now – i can go on a really slow five mile bike ride with him, or gently jog 200m, but proper exercise seems a long way off as the recovery is so gradual. I also feel a bit fuzzy mentally, but no depression or real lethergy – I’m desperate to get out for a run or a bike ride!
Anyway – lots for me to consider here, including lyme’s disease, and all the other alternative therapies mentioned…lots of research for the next few nights!
My doc has been helpful and interested, but hasn’t said anything other than absolute rest and more of the same. I feel positive that some are moving in the right direction, and horrified that some folk think they have been suffering years.
Anyway, I’ll add back to the thread when I’ve read through all the links and advice.
Cheers
FTM

Well just a quick update. I went to the doctors today and he has decided that as all the tests are clear its “probably nothing”.

I’m not sure what to do next.

the doctor has no real access to a good lyme test though and probably has very little experience with it.
go see someone who does and get a western blot test done. this combined with a clinical diagnosis by someone who knows the crack is your best bet.

Nonk, I’m thinking its my only option, even if its just to rule it out.
Even my doctor has said the NHS tests are unreliable. I asked him if he could prescribe me some doxycycline for a month or 2 to see if it made any difference, but he said that my symptoms suggest that if I did have Lyme I would need UV treatment as I would be in the later stages. He did offer for me to be tested by lumber puncture, but I refused. I have read its just as unreliable. Basically I need to find someone that knows what the ___ they are on about, and get tested like you said.

I asked him about fibro and CFS and he agreed they are both unlikely because I dont meet the diagnostic criteria for either, ie no debilitating fatigue for more than 50% of the time (I think thats right) for CFS, and no pain in 11 of the 18 points for fibro.

the doxy has returned very similar results to UV it would seem most folks do ok on it.
anyways best of luck fella.

Thanks Nonk

@ flow, my story. I went to my GP, said ‘could I have caught Lyme? She looked up Lyme in a big book and gave me 28 days’ doxycycline, While I took it, it made my symptoms worse: I noted the details, basically cycles, at 10-12 days intervals, of crippling headaches. I went back to ask for more, mentioning the headaches and timing. She said ‘I won’t give you any more of that, then’.

Later I learned about the Herxheimer effect, how antibiotics cause worsening of symptoms. The killed bacteria release their toxins which affect you. Though my current GP seemed to say this only applies to syphilis, which I think is also a spiral bacteria.

Subsequently I got fixed (well vastly improved) by a doc outside the NHS. Though the GMC are now making trouble for such.

I suggest you get yourself along to EuroLyme

Flow:

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. The last doctor couldn’t even remember my name, let alone symptoms, and it was obvious she didn’t give a shite.

and

I went to the doctors today and he has decided that as all the tests are clear its “probably nothing”.

Same doctor?

Thanks Slow old git, I either have Lyme or CFS, even the doctor thinks more likely Lyme but he won’t give me anything until its proven by a test (lumber puncture which is supposed to be useless) I think my only option is to go private, even if its just to rule it out like I said.

Yes jb79, same doctor.

A slight update, more for the benefit of anyone who happens to find this thread via the search more than anything.

I still haven’t been diagnosed with anything. I had some more blood tests yesterday, vitamin B-12, folic acid, celiac disease, auto immune serology and another which I will find out the name of as I can’t remember.

I have however done a few things that I feel have made a difference to whatever I have.

About a week ago now, I cut out all sugars, and only ate meat and vegetables. Nothing at all processed (except 97% pork sausages from Asda!) Today I decided to go one step further and cut out gluten too. If you look at gluten sensitivity symptoms you will find a lot of PVF/CFS/ME symptoms in there. The sensitivity can be brought on by a stressful event, like too much exercise, an illness of some sort, or emotional stress. Its been pretty easy and I found after 4-5 days I got my appetite back.

Yesterday night I had the first proper deep sleep for a long time, although last night I didn’t :o( I’m hoping maybe tonight I will.

I have also been taking vitamin supplements everyday to help my body with whatever it is.

I am still thinking about getting a private Lyme test.

Hopefully will have an update soon feeling even better!

Another update.

The blood tests came back fine (surprise, surprise)

After a few days of cutting out gluten, I cut out lactose too, then tried to buy mostly organic fruit and vegetables (you will be amazed how much better they taste, and they have up to 40% more nutrients apparently) and things like corn fed free range chicken, free range eggs, decent quality meat etc.

For the past week slept like a baby! My aching muscles and joints have drastically reduced. Some days I actually feel better than I did before this started, then I have a slight set back, not to badly though.

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.

So there you have it, I posted this thread 3 weeks ago, and with lots of reading/research and help from others (not doctors!) I have managed to seriously improve my symptoms and can actually see a light at the end of the tunnel, whereas before I was in a seriously dark place!

Hopefully next week I will be updating again, and will be feeling even better! Fingers crossed!

“whereas before I was in a seriously dark place!”

Ah definately not depression then was it…

Good on you for dragging yourself out from none depression. In things like this being positive about getting better is the thing that makes a difference.

So there you have it, I posted this thread 3 weeks ago, and with lots of reading/research and help from others (not doctors!) I have managed to seriously improve my symptoms and can actually see a light at the end of the tunnel, whereas before I was in a seriously dark place!

To be fair to the doctors, they did rule out a lot of stuff for you – even if they didn’t find / haven’t found the real cause. Still, nice to hear a happier story today, it’s been pretty grim so far!

FunkyDunc

I think I was slightly depressed, but that was a symptom of whatever I have, not the cause.

You try not sleeping for 6 months, have every muscle and joint in your body ache constantly (to name but a few) whilst trying to bring up a 2 and a 5 year old (yep the Mrs works and I’m at home/college), and see how you feel by the end of it.

Not to mention not being physically able to do anything you want to do, or don’t want to do for that matter.

If you want a lesson on the differences between CFS and depression, I could quite easily write you an essay?

You are right Mogrim, I guess they did put my mind at rest slightly by letting me know I wasn’t dying, even though it felt like it at the time.

flow – good that you are getting some respite from your illness – long may it continue.

As a matter of interest, in yesterday’s Sunday Times there was an article entitled ‘Eat Yourself Well’. Various info and menus for assorted conditions including CFS. It’s tied into a TV programme called ‘The Food Hospital’ which starts on 1st November, Channel 4, at 8.00 pm.

If you want a lesson on the differences between CFS and depression, I could quite easily write you an essay?

Haha, nice one! Pretty much my exact thoughts when I went to see a CFS specialist about 4 months ago and she basically told me I might have CFS, but she wasn’t going to help me because I was depressed too. Now, most of my depression was due to being seriously ill again and not being able to do anything about it, but having researched this deeper it seems almost everyone that suffers from CFS/PVF/ME suffers from depression too, often a contributory cause of the illness but almost always a symptom. There are some lazy lazy people out there who sadly seem to work for the NHS! There are still some good doctors though of course.

Anyway, well done for finding your own way to get better. Seemingly this really is the way to go, it’s how I managed and how I know others managed it. You’ve got to believe in yourself and be positive and whatever you need to do that, then do it. It’s also why there are various “one cure fits all” therapies (such as the lightning process) vying for your money…

I was diagnosed with severe M.E. in 2006 (after being diagnosed with pheochromocytoma – another story). I was seen at the infectious diseases unit at Sheffield Hallamshire, where the cause was deemed to be reactivated glandular fever. Basically glandular fever keeps returning, and taking a long time to recover from. I am much better today though: stepped exercise, a changed diet, reducing anxiety and stress and managing the symptoms better has meant increased fitness and a slow, but steady recovery.

To anybody who hasn’t had this illness, I cannot describe the level of fatigue and incapacitation when it strikes.