Healthy, suddenly tired and really unwell, doctors dont know why.

Posted , 5 users are following.

So i just turned 29 in July, living a great normal healthy active life style, wind surfing and football among some of my favourite hobbies. During mid August the glands in my neck became swollen and i felt a little run down and tired. First reaction was that I had just got a little bug, take it easy and it will go away.

After a couple of weeks feeling really pretty rough and tired unable to do much i did start to feel better for a few days. This was a false dawn, as my glands swelled up again and this time much bigger and i felt even worse, i was then bed ridden for the next 2 weeks.

At which point i went to the doctors and they were really quite concerned. My symptoms at this point were: Chronic fatigue, swollen lymph glands in my neck (had been swollen for 5 weeks now), general very unwell feeling, headaches, i also just looked awful (very white, thin, bags under my eyes etc.).

Over the next 3 weeks and a few trips to the hospital the doctors took so many blood test, full blood count, HIV, glandular fever etc. etc. (i can write the full list if anybody wants, they tested for like 50 different things). Chest X Ray and a lower abdomen ultra sound, everything came back fine.

Now 2 months in to my illness although still feeling unwell i didn't feel quite as bad as i had a month earlier and with all my bloods coming back fine the doctor came to the conclusion it must be a very bad virus and i should just carry on with life and wait it out.

It is now another month or so since then, i'm not a lot better. Still have very bad fatigue, headaches and although my glands are not as swollen they come back to say hello.

What the hell should i do? i cant live a normal life, i cant work, doing anything for a sustained period of time makes me feel unwell. I just don't know what to do, the doctors seem to want me to wait anything up to 6 months to see if i "cure" myself. But i mean there is so many other illness and diseases they haven't even considered, i feel helpless and just want to be well again so i can get on and live my life.

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18 Replies

  • Posted

    ME/CFS is a diagnosis of exclusion. If you're had a complete workup with nothing coming back positive, you could have this illness. And if you do, yes, you can get better even if you don't pursue any therapy. But you must take it real easy. The natural tendency is to start being real active once we start feeling better. That can make the symptoms come back with a vengeance. So take it easy, get plenty of rest and good sleep as you're able, and eat healthfully. If you lead a calm, healthful lifestyle, you're maximizing your chances of getting better. 
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  • Posted

    So it looked like the doctors were right, 3 months later, very very slowly i started to feel better, i would say i got back to 85% health, and this very bad virus and hell hole of a 6 months of my life was over.

    Boom - i have been completed incapacity for 2 weeks, exhausted and the extent of my daily life involves walking from my bed to the balcony and back.

    So either i have CFS and this is a relapse or the doctors didnt find what was wrong in the first place, and this virus has overrun my body again.

    BTW - i kind of know why i had this replapse, wether it be CFS or the virus coming back it is beacuse i started exercising everday and had a couple of late nights partying.

    Although to be honest its still pretty sad to think my life has come to this, i.e. i cant do sport or have late nights and part occasionally! 

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  • Posted

    Im still very weak and tired, very strange symptons, feel like there is something in my arms and eyes. I have been to GP, he has reffered me back to infectious disease, my apppoint is come through for a months time. This relapse has now lasted about 6 weeks, is it normal for a relapse to last this long if it is CFS?
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  • Posted

    Update: It is now 3 months since this "Relapse" occured, although i dont feel awful any more the fatigue is very bad, i have spent the last week in bed, fatigue seems worse now that it has ever been, worse than my original virus. Surely this  cant just be CFS / Post Viral Fatigue.
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    • Posted

      Hi mate, i think it does sound like CFS, your story is very similar to my own. It might be worth asking the GP for a trial of valacyclovir, i'm about to do so as i was also PVF in the beginning but all tests negative, same as you, dozens of tests apparently nothing wrong with me yet i find walking extremely tiring when i used to be a marathon runner.
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    • Posted

      Just googled valacyclovir and it says it is used to slow spread of herpes virus?

      This realpse has lasted longer than my original illness now and also the fatigue is worse than ever, seems a bit odd that is acctually worse, im starting to wonder if could be MS since no signs of improvement.

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    • Posted

      Hi mate, been there too with the whole MS thing. Maybe google valacyclovir CFS. My fatigue got worse, the last 6 months it's been stable. You would need to see a neurologist and have an MRI to rule out MS, i had MRI and it was clear. CFS/MS have very similar symptoms, both can be equally debilitating.
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  • Posted


    I don't have any miracle answers for you but I do know what helped me to come to terms with CFS/ME, eye issues and parental issues.

    Firstly, it's about a mind set. Your thoughts and only your thoughts go through your head. So, if you recognise that only you can change those thoughts then you begin to take control and manage your life.

    Secondly, with self esteem and confidence kept uppermost in your mind, lower your expectations in life. Try not to see this as negative in any way but, instead, use it as a strategy for coping for the time being. I t always works for me.!!!!

    Please don't think I am asking you to lower your expectations generally. I believe people with high expectations are virtuous. Don't change. You are who you are but sometimes we need to think outside of the box.

    All the best and remember, the mind is a far stronger tool than the body. Stand back, look into your world

    and try to look for the positives.

    There are thousands more in the world less off.


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    • Posted

      Jinny, you seem to have replied to my thread presuming i am sat at home feeling sorry for myself and thinking i am never going to get any better. You couldnt be more wrong i am a very positive person and although it has been a difficult 9 months i am still keeping my head up and doing everything within my power from thinking positevely to eating healthy and resting when i need too.

      Obviously once all medical options have been exhausted the only thing that remains is to look at other options such as mind set as you have suggested, but before we can relie soley on positive cognitive thinking curing my disease i think perhaps first it would be best to look at all possible known conditions and cureable options from science that we have discovered over the past x hundreds of years.

      Your comment of "There are thousands more in the world less off" - actually i tell myself this a lot, however i think it is quie patronising to say it to someone else. Of course there are always people less off than yourself, you could say this in almost any sitation! Next time i walk past a homeless man on the street should i say "dont worriy, i saw a man round the corner who didnt even have a blanket" or if i went into hospital and saw someone diagnosed with x disease should i say "dont worrie it could be worse you could have....".


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