dealing with post viral fatigue

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madeline06
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Report Thread starter 11 years ago
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I found out today i have this, and i have done for over a year.
the doctors made a huge **** up! i got tested positive for glandular fever in july 2008 and somehow my GP surgery messed up my results, told me i was anemic and put me on iron tablets (how on earth did they get those 2 things confused??!)
and today the doctor got up my blood test results and mentioned the glandular fever and told me i am always tired/dizzy/other things due to experiencing post viral fatigue. and that i didnt have anemia just my iron was a little low!!
id actually rather have anemia cos with that, the tiredness goes away after medication.
i feel so frustrated because this may never go away. luckily, it never affected me at college and even though i start uni in 2 weeks, i know i should be ok with the work despite feeling crap all the time,although a small part of me worries what if it gets in the way.

how do people cope with it?? im tired everyday, i often go home when im out with friends because i just need sleep.
at reading festival recently i randomly kept falling asleep while we were in the arena and stuff!! it is really bad. i hate it. now i know it may not go away i feel like screaming.
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natamac
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Hi,

I had M.E./chronic fatigue syndrome for about 7 years, which from my understanding is similar to PVFS but longer term. The key thing I found on dealing with symptoms on a day to day basis was pacing, which was recommended to me by an M.E./CFS specialist.
The idea is to manage activity by doing it in small amounts with rest periods in between. For example someone who is moderate-mild may go shopping for a couple of hours then rest for 30 mins or more severe people may only cope with watching TV for 1/2 hour or a short conversation with friends before needing a rest. For resting it really is doing nothing, maybe listen to relaxing music or something but very low activity. This can be really boring and annoying at first but you get used to it and it does make you feel better. It is good to alternate activities that require mental power with physical ones too.
Just find the right activity level for you and stick to it. When you feel ready you can then gradually start to increase activity levels and the idea is eventually your activity will be normal and you will be fully recovered.
Stay positive long term illness is not at all fun but you can get back to normal. I have been recovered for about 2-3 years now and can easily cope with a full-time degree and a social life.
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*Sparkle*
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The post viral fatigue will go away, just one day you won't be feeling these things anymore, but you have to try and push past it as you'll never get better.

I had it after a nasty nasty nasty case of the flu (thats all the doc cared to say it was anyway) and I run down for over a year but pushing through it you get better.
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JESSHOLMES
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I've just been diagnosed with glandular fever and I start uni in less than 2 weeks. I spend all day in bed feeling horrendously unwell. My doctor just advised rest and vitamin B injections.
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RagaS
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I had CFS/ME a few years ago for 3 years. Like people are saying it is quite similar to what you have... It will go away but it will also take time, dont overdo things otherwise it will have a negative effect. I had it through my GCSEs and i found the easiest thing to do was to slowly build up tthe amount i did each day. If you overdo it things wont get better.

Just remember that things will get better and stay positive. It may take time but it will take longer if you push yourself beyond your limits.

Things will go back to normal, it will just take time.
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heidigirl
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Glandular fever is horrible. People don't realise how bad it can be. It took over a year for me to feel right again when I had it (and contributed to messing up my A-levels). It was well over a year before I started to feel myself (and I suspect the reason I had a period about eighteen months after where I was feeling kind of depressed was down to it). I have heard of people who take a really long time to get over the fatigue though, and it's also normal to feel miserable. I actually found that to be the hardest thing, that being tired made me feel really emotional all the time.

But really there isn't a lot you can do about it except rest, and get enough vitamins (my doctor at the time recommended moderate exercise but that wasn't going to happen, I was sleeping about 15 hours just to have enough energy to lie on the sofa...:rolleyes:) You're better off taking things easy (even if it means you have to pospone some plans or have lots of early nights in) than overdoing it, which is only going to prolong it and make it worse.

Hope you're feeling better soon OP.
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Jamie
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(Original post by madeline06)
I found out today i have this, and i have done for over a year.
the doctors made a huge **** up! i got tested positive for glandular fever in july 2008 and somehow my GP surgery messed up my results, told me i was anemic and put me on iron tablets (how on earth did they get those 2 things confused??!)
and today the doctor got up my blood test results and mentioned the glandular fever and told me i am always tired/dizzy/other things due to experiencing post viral fatigue. and that i didnt have anemia just my iron was a little low!!
id actually rather have anemia cos with that, the tiredness goes away after medication.
i feel so frustrated because this may never go away. luckily, it never affected me at college and even though i start uni in 2 weeks, i know i should be ok with the work despite feeling crap all the time,although a small part of me worries what if it gets in the way.

how do people cope with it?? im tired everyday, i often go home when im out with friends because i just need sleep.
at reading festival recently i randomly kept falling asleep while we were in the arena and stuff!! it is really bad. i hate it. now i know it may not go away i feel like screaming.
1) There is no cure for glandular fever so they wouldn't have treated you any differently.

2) post viral fatigue is common after glandular fever. THe only 'cure' is graded exercise - i.e. very slowly increasing what you can do day by day. If you have a big day ona tuesday, take it easyier to friday.
mostly its about knowing your limits.
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matt davidson
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I think most of the important bits have been covered by now. The only thing I'll stress is stay active! if you let it get hold, and just stay in bed all day, or lounge around the house it will only get worse. Also I find its really important to get out of bed at a reasonable time every day. This can be really difficult if, like me, you feel truly horrible in the mornings. Generally I find that if i get up at around 9ish and move around the house, I feel a lot better than if i sleep in till 11ish. The easiest way Ive found to do this is drag myself out of bed and have a shower- I usually feel instantly better.

My sympathies to JESSHOLMES, I got a really bad case of glandullar fever halfway through my second year at uni, and still have PVFS 3 years later. On the plus side I have found myself a good GP, who told me that PVFS lasting up to 5 years can be fairly common, and so long as its less than 10 years your pretty much guarunteed a full recovery. Eventually.

Hope this helps
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malleablegrace
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I have ME/ CFS and I have done for a while now, I'm guessing since I was around 17. I didn't have glandular fever (at least not as far as I'm aware), but I still have this horrible thing.
The advice given above is all really really good, so pay attention to that generally I'd just say go to uni, try not to think too much about it and live your life as normal, but make sure you don't overdo anything and if you start feeling as though you might be relapsing, take it easy. Basically just be nice to yourself.
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Jamie
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#10
(Original post by malleablegrace)
I have ME/ CFS and I have done for a while now, I'm guessing since I was around 17. I didn't have glandular fever (at least not as far as I'm aware), but I still have this horrible thing.
The advice given above is all really really good, so pay attention to that generally I'd just say go to uni, try not to think too much about it and live your life as normal, but make sure you don't overdo anything and if you start feeling as though you might be relapsing, take it easy. Basically just be nice to yourself.
"I have ME"

No such thing.
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natamac
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(Original post by Jamie)
"I have ME"

No such thing.
On what basis is this made? Try living with it for years on end before making such a comment. This is a real and physical disease, yes it can be affected by psychological factors such a stress but so can most illnesses. People like you make life very difficult for those with M.E. who not only have to deal with this terrible illness and the prospect of a very slow recovery but also people who say that they are not really ill and are just schoolphobic or should "pull themselves together and go back to school"
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Jamie
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#12
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CFS - fair enough.

But ME? It stands for Myalgic Encephalomyelitis. That means 'muscle pain and brain inflammation' in doctor speak.
Being as patients with 'ME' typically have completely normal blood tests with no evidence of inflammation. That no modern 'ME' patients have been found to have anything on MRI, and certainly the few that have happened to die from other cause (accidents for instance) have never had any evidence of brain inflammation at autopsy. The whole scientific name and lumping it together with CFS is bizarre.
Any when you look at the 'disease' charachteristics, its so broad as to include every possible symptom under the sun.


So unless you have had a test that says otherwise, you don't have Myalgic Encephalomyelitis. You have Chronic Fatigue.
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malleablegrace
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(Original post by Jamie)
CFS - fair enough.

But ME? It stands for Myalgic Encephalomyelitis. That means 'muscle pain and brain inflammation' in doctor speak.
Being as patients with 'ME' typically have completely normal blood tests with no evidence of inflammation. That no modern 'ME' patients have been found to have anything on MRI, and certainly the few that have happened to die from other cause (accidents for instance) have never had any evidence of brain inflammation at autopsy. The whole scientific name and lumping it together with CFS is bizarre.
Any when you look at the 'disease' charachteristics, its so broad as to include every possible symptom under the sun.


So unless you have had a test that says otherwise, you don't have Myalgic Encephalomyelitis. You have Chronic Fatigue.
Whilst I love the fact that you obviously know a fair bit about this in terms of researching and *****ing about the name, I would like to point out a few things.

Firstly, do you not think we know that there's seemingly no physical evidence there? WE ARE MORE AWARE OF IT THAN MOST PEOPLE. You don't need to patronise. Many of us have spent years feeling like crap, for no apparent reason, and wasted more time at doctors surgeries and hospitals having tests than you could care to imagine. The amount of biology lessons we've all been given on this can justify us having our own opinions on it alone, not just the fact that we actually have to live with it every day.

If you actually looked in a bit more detail, yes they call it Myalgic Encephalomyelitis but there are lots of theories as to what it could be. One of these theories is that the hypothalamus gland is overactive, thus causing massive sensitivity in the body's pain and regulation system. It is a disorder of the nervous system, as the symptoms reflect. Just because you can't "see" it on MRIs does not mean it's not there.

Have you also considered the fact that some people find it a bit more sensitive to call it "ME" rather than "Chronic Fatigue"? I personally prefer to do so purely because the name "Chronic Fatigue" does not even BEGIN to cover the things I suffer with as a consequence of whatever "this" is. "ME" tends to just get the point over that I have something wrong with me and most people will just tend to shut up and not question every little thing like you are.

I am well aware it is not possible to "have" ME. Because ME is a term for what it is "estimated" is there, because they don't know. But I would like to point out that in answer to anyone who might ask what is wrong with me, I would much prefer to say "ME" and be aware if the fact that it's perhaps not technically totally correct than go "oh well, I have about 25 symptoms on a daily basis which tend to fluctuate and stop me doing most things, affect every aspect of my life and sound like I'm being a massive hypochondriac, isolating me from many people. There are many theories as to what it actually is, but no one reeeally knows despite the endless research that goes in to it and the time I've wasted in medical institutions. But in summary, the symptoms have ended up being summarised by an umbrella term called 'ME'." - it's a hell of a lot easier, as I'm sure you'd agree, to just say "I HAVE ME."

And no, I'm not just going to say "I have Chronic Fatigue" for the reasons I mentioned above. Anyone I've said this to in the past has gone "oh yeah, I get tired too" and are completely clueless about it.

With regards to your point that we seem to have "every symptom under the sun", are you actually saying that we're making them up? Yes, we do have a lot of symptoms. It is not very nice, and I cannot think of one benefit we would get from making any of that crap up. So if you were trying to accuse us of over exaggerating minor things, or inventing symptoms, you'd better think again.

So as I said, whilst I appreciate the fact that you're trying to be technically correct about the whole thing, please do so in a place where you're not actually going to be saying it to or around people who actually have to live with this thing because quite frankly, in comparison to what we have to live with on a daily basis, whether or not the name is technically correct is the least of our worries.
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Jamie
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"I personally prefer to do so purely because the name "Chronic Fatigue" does not even BEGIN to cover the things I suffer with as a consequence of whatever "this" is. "ME" tends to just get the point over that I have something wrong with me"

No, you like to say ME because then people think it is a proven, medically diagnosed disease. It means you are a patient. Its some magical beast you can attribute every ache, pain, cough, sniffle, every moment of tirednes and every upset tummy.

Does chronic fatigure exist - dont doubt it. But this umbrella creation of ME is tosh with no scientific basis. Worse still there are many genuine diseases that end up getting mislabelled as ME - just as happens with 'IBS' and 'Fibromyalgia'.

That there is a certain...personality type that one can see in the vast majority of people who start an excuse by saying I have 'ME/Fibromyalgia/IBS' speaks volumes.

Whilst i appreciate the fact you're trying to create a disease to suit your symptoms, please do so in a place where you're not actually going to be saying it to people who know better...
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malleablegrace
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(Original post by Jamie)
"I personally prefer to do so purely because the name "Chronic Fatigue" does not even BEGIN to cover the things I suffer with as a consequence of whatever "this" is. "ME" tends to just get the point over that I have something wrong with me"

No, you like to say ME because then people think it is a proven, medically diagnosed disease. It means you are a patient. Its some magical beast you can attribute every ache, pain, cough, sniffle, every moment of tirednes and every upset tummy.

Does chronic fatigure exist - dont doubt it. But this umbrella creation of ME is tosh with no scientific basis. Worse still there are many genuine diseases that end up getting mislabelled as ME - just as happens with 'IBS' and 'Fibromyalgia'.

That there is a certain...personality type that one can see in the vast majority of people who start an excuse by saying I have 'ME/Fibromyalgia/IBS' speaks volumes.

Whilst i appreciate the fact you're trying to create a disease to suit your symptoms, please do so in a place where you're not actually going to be saying it to people who know better...
I'm not even going to waste my time replying to that. You're just an ********.
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natamac
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(Original post by malleablegrace)
I'm not even going to waste my time replying to that. You're just an ********.
I second that. Thanks to maileablegrace for such a complete answer. So many people reply with "I get tired too maybe I have CFS" when they have no idea of the utter exhaustion we have/have had to suffer with as well as all the other symptoms.
I also recall a debate a while back for changing Myalgic Encephalomyelitis to Myalgic Encephalothapy. Not sure if it went through or not. The myalgic bit is certainly true as the muscle pain can be so severe, even with very little activity.
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Jamie
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(Original post by malleablegrace)
I'm not even going to waste my time replying to that. You're just an ********.
An educated ******* who can see through the bull and who has met more than his fair share of 'fibromyalgias, IBSs, MEs' etc and finds them to be a peculiar high maintenance bunch who drain vast amount of resources, complain to a huge degree, and yet have little evidence basis for their disease.

There is something sad about watching one particular 'ME' sufferer who I have earlier witnessed get her well rounded body up from her electric wheelchair to purchase a full fat coke and packet of crisps, telling the chap next to her (a paraplegic from waist down undergoing chemo for bowel cancer) her woeful life story.

I'm sure in years to come that we will find a subset of 'ME' sufferers have a specific disease with a proven pathophysiology behind it. At which point the others who lay claim to the title will have to chose another disease.

Indeed, the same thing happened with MS.
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malleablegrace
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Your arrogance astounds me.

I do see your point - I'm sure there are some people who convince themselves they have something wrong with them when they just need to stop being lazy, need to make an effort with diet and exercise etc. But I can assure you that isn't the case with me or everyone with whatever this is, regardless of what you think about my lifestyle or how much maintenance I require. I'm not a hypochondriac, I'm not some weirdo with a half-arsed version of Munchausen, I don't 'want' there to be anything wrong but it's the conclusion I've come to after years of feeling terrible and there being nothing to explain it, until this. So I'm sorry if I offend your education but all I'm trying to do is help myself feel better and if it means I have to categorise myself under something you're not happy with, that's your problem.
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Jamie
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(Original post by malleablegrace)
Your arrogance astounds me.

I do see your point - I'm sure there are some people who convince themselves they have something wrong with them when they just need to stop being lazy, need to make an effort with diet and exercise etc. But I can assure you that isn't the case with me or everyone with whatever this is, regardless of what you think about my lifestyle or how much maintenance I require. I'm not a hypochondriac, I'm not some weirdo with a half-arsed version of Munchausen, I don't 'want' there to be anything wrong but it's the conclusion I've come to after years of feeling terrible and there being nothing to explain it, until this. So I'm sorry if I offend your education but all I'm trying to do is help myself feel better and if it means I have to categorise myself under something you're not happy with, that's your problem.
it would be arrogance if i presented myself as knowing everything. or i was completely going against the thinking in the world of medicine.
I am not.

And I'm sure you're painfully aware of that. That glassy look in the eye when you give your 'past medical history' to any doctor, nurse etc.

It won't improve I'm afraid until a system comes out to sort (for want of a better phrase) the wheat from the chaff.

And please don't think I'm comments thoughtless. They are well thought out, and objective in nature.
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malleablegrace
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(Original post by Jamie)
it would be arrogance if i presented myself as knowing everything. or i was completely going against the thinking in the world of medicine.
I am not.

And I'm sure you're painfully aware of that. That glassy look in the eye when you give your 'past medical history' to any doctor, nurse etc.

It won't improve I'm afraid until a system comes out to sort (for want of a better phrase) the wheat from the chaff.

And please don't think I'm comments thoughtless. They are well thought out, and objective in nature.
My doctors are the ones who've been diagnosing me, I haven't diagnosed myself here. I'm not going to keep arguing with you, we're not going to agree on this and that's that. I'm not going to waste any more time flitting back and forth on this. You have your opinion, I have mine.
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