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Post viral fatigue

357 posts & 39 voices | Started 8 months ago by flow | Latest reply from FieldMarshall

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flow - Member

Has anyone suffered and recovered from this? I think its pretty likely I have it, I have been tested for everything else known to man and all the tests come back clear.

It started after being ill for a about 6 months ago after a viral infection (strange eh!) since then I have had severe insomnia, aching all over like I have the flu, and chest pains amongst other things.

They gave me anti depressants for sleep which worked at first, now they are starting to stop working

Its really getting to me, I cant ride my bike because I feel extra shite after, in fact I feel shite after a day of doing nothing.

Any suggestions? Anyone got or getting through it?

Any advice would be muchly appreciated.

Posted 8 months ago #
flipiddy - Member

Do you recall being bitten by a tick at any point?

I would suggest a graded return to exercise. You might have to stay off the bike for a few months. Swimming and saunas are a good combo for building yourself back up again. Speaking from experience here.

What antidepressants are you on? I found amitriptyline to be helpful (I had ultra-low doses to help with sleep and the flu-like aches).

Posted 8 months ago #
Bunnyhop - Member

Flow - there are a few of us on STW who are indeed sufferes. Of the ones I know of, it's getting easier as time goes on.

Its a case of resting and taking things easy. Not easy when you're an active person I know.

http://singletrackworld.com/forum/topic/post-viral-fatigue-has-anyone-recovered-from-this

Have a read of this ^^

Posted 8 months ago #
flow - Member

Thanks for the replies.

Flipiddy - I don't recall being bitten by a tick. I just googled tick bite and it looks like it would have been pretty memorable, some of them look nasty!

At the moment I can't ride my bike at all, I tried last Monday and have only just stopped aching. I've not tried any other forms of exercise yet. I just started a photography course at college 3 times a week, even that's a real struggle.

I'm not tired in general, more my whole body just feels knackered like its had enough.

I asked for Mirtazapine because I knew it made you sleepy, my sister takes them.

Bunnyhop - After reading that thread it seems more likely that I do have it. I have read on the net that insomnia can be a symptom, although you would think you couldn't keep yourself awake, I'm the opposite, I can't get to sleep (naturally) no matter how tired I am. When I do, its only for a few hours max.

I found doctors to be fairly unhelpful - once they have done the blood tests to rule out anything 'serious' they are not interested basically.

I found this out today, after my 50 thousandth trip to the doctors. She basically said all the tests have come back clear, there is nothing she can do/there is nothing wrong with me.

Being off the bike and generally not being able to do much is really starting to get to me, I don't even feel like making fun of people on here anymore I understand why it makes people depressed. I think the fact I don't actually know if I will ever be back to normal makes things worse. I have to keep my hope up I guess!

Posted 8 months ago #
flow - Member

Flipiddy, my brother just phoned and said exactly the same thing as you, pretty strange.

I googled Lyme disease and it sounds pretty much exactly what I am experiencing. Couple that with the fact I have been riding in all sorts of tick infested areas for the past 15 years, there is quite a high possibility this might just be it! Insomnia is one of the major symptoms too.

Posted 8 months ago #
doctornickriviera - Member

It'scaused by post viral debility, would describe in depth but. Cant. Keep. My. Eyes. Open...........so tiredzzzzzzzzzzzzzzzzzzzzzzzz!

Posted 8 months ago #
jojoA1 - Member

Dr Nick, could you stay awake long enough to elaborate please? I've suffered with this in the last 18 months and got through it, but since getting another virus in the last month, I'm concerned I'm back on a slippery slope.

Major problem is the dismissive attitude of GPs to this. How does one tackle that? I've just been labelled as a neurotic depressive when I KNOW at times this is definitely physical (whilst having psychological impact).

Posted 8 months ago #
GJP - Member

Some people can suffer badly with non-specific muscle aches, stiffness and weakness whilst taking Mirtazapine.

I struggled badly whilst on it for the first time, but the second time had no problems. My Dad struggles with it. But, given everything else you describe this is more than likely not your problem, but worth keeping in mind.

Posted 8 months ago #
Bunnyhop - Member

Flow - do You have any supportive relatives or really close friends who can help you out? I found simple evryday things like washing, shopping even getting dressed a mountain to climb, they then became a hill and in time everything became easier. This all takes time. You need people to help with the shopping and chores.

My trick was to take each day at a time (I was off the bike for 7 months at first), then sporadically after then.

I then gave myself a goal, which is what kept me sane. A small goal, but something to aim for.

Change doctor if you can.

Posted 8 months ago #
flow - Member

Thanks GJP, I had the aching etc before I started on the Mirtazapine though.

Bunnyhop - Things are quite difficult at the moment, to be honest you wouldn't think I was ill by looking at me, sometimes I think people think I'm making it up. I go on about it so much I think everyone is sick of hearing me talk about it. I haven't been this ill for this long ever. I will definitely be changing doctors asap, and asking for a test for lymes disease just to be on the safe side.

Posted 8 months ago #
flow - Member

I actually remember being bitten months back! I thought it was an ant bite but thinking back at it now was way to big to be one. Hopefully this is the problem and I can get it sorted!

Posted 8 months ago #
grum - Member

sometimes I think people think I'm making it up. I go on about it so much I think everyone is sick of hearing me talk about it.

I know how that feels.

I also went down the route of getting tested for Lyme disease, more than one type of test, but they all came back negative - if you look into it though you discover that there are very few places that can test for it reliably. It's worth looking into though, but don't necessarily get your hopes up. Sorry!

BTW, it's now about 2 years since I got ill - exactly the same thing where I had a nasty cold/flu type virus and never got properly better. I spent at least 6 months off the bike completely. I am a lot better now though - did a 2 week road trip to the Pyrenees with a few days of walking/biking included, and have been out biking about once a week since I got back. Still feel knackered a lot and don't sleep properly though.

I'm not back to how I was before I got ill, not sure if I ever will be, but I am doing more and more all the time I think. Easy to get into a cycle of feeling better, then pushing yourself and making yourself feel crap again. Still haven't quite got out of that habit.

Posted 8 months ago #
Bunnyhop - Member

What grum says is true.
On good days I feel almost normal and sort of forget that i'm ill, then I go mad and suffer for a few days/weeks after. Also I can put on an oscar winning performance when it comes to dealing with work and customers.

That is the annoying thing that you can look perfectly well and feel like death warmed up.

I believe things will get better for you. Atm. though just concerntrate on doing what you can, eating plenty (I find snacking is good), keep you energy levels up and try not to get cold.

Let us know how your test results go?

Posted 8 months ago #
flow - Member

Thanks Bunnyhop.

I managed to get a blood test for Lyme Disease tomorrow, and change my doctor all in the same day.

Posted 8 months ago #
flipiddy - Member

flow – good luck with the test tomorrow.

Like grum says, the NHS ELISA test is considered unreliable. If you do come up with a positive, then a month of antibiotics, which is the standard NHS treatment, may not be long enough to cure you. You may come up with a (false) negative, in which case you will get little support from your GP.

If you strongly believe it is Lyme (if the clinical symptoms support a diagnosis and you and your GP have ruled out other possibilities such as candida, lupus, etc) then do yourself a favour and get it looked into privately. If you have the finances to do so of course

ILADS is very good for information on treatment protocols and options. This is a good starting point.
Eurolyme is a good source for asking questions about symptoms and where to get treatment

Get in touch if you need any advice...

Posted 8 months ago #
flow - Member

Thanks mate, some really useful info there, nice one.

Posted 8 months ago #
flipiddy - Member

No worries buddy, good luck!

Posted 8 months ago #
Edric 64 - Member

I have felt knackered most of the time since 1996 I had a couple of good seasons on the bike but have felt debilitated for years .I have had god knows how many blood tests all of which are negative. It really gets to me at times I can feel tired for days despite not doing much and trying to get really fit again is difficult because of this

Posted 8 months ago #
flow - Member

You might have a food allergy, like gluten or dairy if tiredness is the only symptom. Problem is in reality it could be lots of things, so finding the cause is difficult as I and others have found out. Just don't give up trying, you will get there in the end!

Posted 8 months ago #
doctornickriviera - Member

Sorry op! Us docs are crap at dealing with illnesses which have no known cause , you cant test for and there is no magic bullet to fix it.

If you havent read this it may help

http://www.patient.co.uk/health/Chronic-Fatigue-Syndrome-/-ME.htm

Posted 8 months ago #
flow - Member

I'm sure you are very good at your job Nick, but if you spoke to my doctor you would understand she doesn't have a clue about anything, hence why I am changing.

When I spoke to her today about getting tested for Lyme Disease, she told me I had already had a blood test and that nothing showed up. Lucky I did some homework before hand and told her that it wouldn't show up on a FBC and you have to look for the specific bacteria. She rang me back and agreed! If I hadn't have known that, I wouldn't have got a test at all.

Its the human equivalent of taking your car to Kwik Fit, farking useless.

I have read lots about ME/CFS/PVF etc, the problem I have is that my main symptom isn't fatigue, I'm not really tired at all. I just happen to have most of the other symptoms of PVS or whatever, this is why I'm thinking it could possibly be LD.

Edit:

As you are a doctor, what would you do if a patient came to you complaining of chronic insomnia, aching/cramping muscles and joints, swollen glands, brain fog, muscle twitching, itching under the skin, drenching night sweats (I could go on)

Posted 8 months ago #
tallie - Member

http://www.ukclimbing.com/articles/page.php?id=398

This is a really useful summary of Lymes disease in the UK. The link to the US paper detailing best practice and gold standard tests for Lymes is particularly useful - worth printing out, reading and taking to the GPs.

Posted 8 months ago #
doctornickriviera - Member

Problem is you cant test for everything and some things are medically unexplained. Cfs being one of them. You can have a simple serology test for lyme disease btw. Your gp could do all the usual primary care tests and as symptoms ongoing refer you on to a clever hospital doc for further inx and diagnosis. We quite often see patients like yourself with all sorts of symptoms and all tests draw a blank im afraid.

And as for your symptoms id probably run up and down the street outside the surgery ringing a bell shouting " unclean". Inx = investigation

Posted 8 months ago #
flow - Member

Thanks tallie

Posted 8 months ago #
flow - Member

Nick, are you sure you don't work at my doctors?

Posted 8 months ago #
flipiddy - Member

http://www.ukclimbing.com/articles/page.php?id=398

This is a really useful summary of Lymes disease in the UK. The link to the US paper detailing best practice and gold standard tests for Lymes is particularly useful - worth printing out, reading and taking to the GPs.

That's a really good overview.

If you do undertake a long antibiotic regime, don't forget to eat a low yeast and sugar diet (ie keep off the alcohol!) and supplement with probiotics to re-colonise your gut.

This is a really important point for anyone taking antibiotics for an extended period. Cut out sugars and yeasts otherwise Candida will strike and that's hard enough in itself to get on top of. Symptoms are almost as bad as Lyme too. Nasty.

Posted 8 months ago #
doctornickriviera - Member

Didnt you see me outside the surgery withith my sandwich board saying the end of the world is nigh on it?!!

Posted 8 months ago #
mboy - Member

Flow

I know we've had our differences on here in the past, but if you want to drop me an email at all to discuss this offline, maybe I can help... I've been struck by PVF/CFS/ME twice now, having only recently started to make a proper recovery from my 2nd bout. There's also a couple more guys on here I know that have had it (one I know personally very well), and I know a couple of friends who have had it too.

It's not all doom and gloom don't worry, but just because something worked for one person, doesn't mean it will work for another... Everbody is different, which sadly in this case doesn't necessarily help!

Anyway, if I can help/advise at all, my email is in my profile...

Posted 8 months ago #
flow - Member

Thanks Mboy, thats really nice of you mate, especially after all the cyber arguments we've had, you just made me smile out loud.

You can never have to many people to talk to, I have already talked my family/friends to death, its all I ever talk about!

Hopefully, in the not to distant future, we will be arguing again and back to normal

Posted 8 months ago #
Mooly - Member

There is a new condition that doctors are reporting more and more of called T.A.T.T. (tired all the time). Might be worth looking up.
I had been suffering from similar stuff and have found that wheat literally makes me want to fall asleep. Have cut it out as much as possible but its tricky. Hope you pin it down and start feeling better. Good luck.

Posted 8 months ago #
Nonsense - Member

PVF is closely linked to M.E. Would be worth looking at the M.E Action website for further advice and guidance. My mum suffers badly from M.E and has been bedridden or about the last 15 years. As for dismissive GP's refer them to the latest advice from the BMA and suggest they read up on it before you report them.

Posted 8 months ago #
flow - Member

Having read a lot of the links, I am now extra unsure WTF is wrong with me.

ME/CFS/PVFS etc all have an extreme emphasis on being stupendously tired all the time, this is one thing I am not. I would say I'm no more tired than the average person. Its all so confusing

Posted 8 months ago #
Bunnyhop - Member

As you are a doctor, what would you do if a patient came to you complaining of chronic insomnia, aching/cramping muscles and joints, swollen glands, brain fog, muscle twitching, itching under the skin, drenching night sweats (I could go on)
You've just described the menopause flow

Posted 8 months ago #
nbt - Member

>Having read a lot of the links, I am now extra unsure WTF is wrong with me

One of the problems of self diagnosis fro the internet, sadly. Not sure many doctors are much better, though

Posted 8 months ago #
flow - Member

Bunnyhop - you're right mate, I'd hate to be a woman!

Nbt - self diagnosis is a bit unreliable, but the doctor just looks at me blank and says "well all the tests are fine"

Ahhhhhh I must be making it up then

Posted 8 months ago #

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