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Feeling a bit frustrated with post viral fatigue, any advice?

Posted , 13 users are following.

pinkcuppa
pinkcuppa

Hi, I'm new to this forum so I'm sorry that this is all going to come off as a bit of a complain, thank you for reading and I would be grateful for any advice you may have.   

I was diagnosed with post viral fatigue this year following a bad virus.   Before that I was pretty healthy, I walked to work everyday and was at the gym a few times a week.  Now, although I have recovered a lot from when it first hit, I still struggle day to day.  Something as small as walking up the stairs knocks me ill, and a few hours out can leave me aching for days.  Even cooking a meal isn't usually an option.

I'm getting frustrated because although I can accept that nights out and shopping centres are out of the question (I'm in my mid twenties, so what I usually did), I'm still working full time, even though this means that most of my time off is spent resting (in pain) to try and keep myself fit for work.  I can't quit my job because we need the money but I'm not coping very well.  My employer is usually good but because there is technically nothing wrong with me (my doctor thinks it will pass, and its not classed as a disability) they won't make any allowances or accomadations, which means that its not unusual for me to work very late nights or six days a week. My performance is suffering and I worry about dismissal.  I want to work part time to give myself more rest (and be better at my job) but I won't be able to pay the bills, and my family don't think this is an option for us.

I've tried going back to the doctors but although she has run blood tests etc, I kind of get the feeling that she doesn't see why I'm bothering her, as she just tells me that recovery can take several months, and its not quite been six.

It just leaves me frustrated because I feel so guilty about being ill.  Although they tell me to rest and recover, it seems to be as long as I can manage pretty much as I did before.  I know I put too much pressure on myself, but I feel as though I'm doing something wrong by needing help now, even though I've worked my whole life.

Does anyone else feel this way?

Thank you.  Best wishes to everyone.

0 likes, 33 replies

33 Replies

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  • sarah1369
    sarah1369 pinkcuppa

    Posted

    Hi and welcome! I'm sorry you are under so much pressure and feeling so I'm well! Do you have any other symptoms as well as the fatigue and pain?

    My story is pretty similar to be honest, been going on for about 14 years (after having glandular fever)and after numerous visits to GPs got one to listen and am currently waiting to see the CFS specialist in a couple of weeks. Could you ask to see another GP for a second opion or ask do they think it could be CFS? Even though there's no cure or real known treatment at least having a diagnoses would give you something to go on with work and going part time, espically as its covered under the equal opportunities act (or so I'm told.)

    Like yourself I was working full time and ran myself completely into the ground and was off sick for awhile. On going back I used my annual leave to reduce my hours and after a vist to occupational health am now working 4 days instead of 5 (but had to fight for it and currently only for 6 months!) like yourself work took everything out of me (still dose) and evenings and weekends are used to rest enabling me to face work (although at a struggle.)

    I wish you good luck and hope you find some answers, help and support. The good thing about this forum is that you know you are not alone and people give good advice and support!

    • pinkcuppa
      pinkcuppa sarah1369

      Posted

      Hi Sarah.  Thank you for replying to me, it's always good to hear from people going through the same thing, and our stories do sound very similar.  I'm sorry to hear that yours has gone on so long.  

      Depending on how tired I get, my symptoms range from tiredness and aches to dizzy spells, adversion to light etc. I wouldn't like to list them all. I have considered using my annual leave in a similar way, but my employer is not too keen.  I was off for a couple of months, but after a phased return was back to full time. Speaking to occupational health may be an option though, my employer mentioned it but I got the impression it was a bad thing from them.  Am I ok to ask how you persuaded your doctor to give you a diagnoses?  Mine has confirmed post viral fatigue but my understanding is that CFS is the long term version.  

      That's good news for your specialist appointment, I hope everything goes well smile

    • sarah1369
      sarah1369 pinkcuppa

      Posted

      I'll be honest I had enough of going to the GP and not getting answers. Somebody told me about CFS so I looked it up and could basically relate to all the symptoms (some I would have thought relevant such as sensitivity to light and loud noises, confusion/brain fog (felt I was losing it) and poor body temperature regulation.) I took a print out to the GP (a new one) about CFS including symptoms and said I think it's this! Luckily she listened she started the referral and of course took more bloods which once again came back normal apart from a slight vitamin DDeficiency which I'm on supplements for. This was during my period off sick (she signed me off) were I collapsed. Had been going back and forth to the GP with fatigue and serve dizziness (alongside other symptoms which I didn't realise we're connected) for years. Always the same things had bloods done but came back normal!

      I was lucky that I was eventually listened to. Try occupational health they are there to help you. As others have suggested see if you can can be signed off to enable you to rest and try to recover.

    • pinkcuppa
      pinkcuppa sarah1369

      Posted

      Thanks, Sarah.  I'm going to try the occupational health and I'm going to try and get the doctor to help me more. I'm not sure about signing off completely, but reducing my hours can only help. Thanks to the advice of yourself and the others on here, I'm feeling a lot more confident about my way forward, and I don't feel as guilty for being ill, as I know that I need to take more time to get myself better.  Thanks again for your support, and best wishes to everyone for recovery.
    • sarah1369
      sarah1369 pinkcuppa

      Posted

      You are welcome and don't ever feel guilty about being ill, you haven't asked to feel the way you do! You have enough to deal with without dealing with guilt and things you have no control over! You are trying to get yourself better, just take it one day at a time.

      Take care and all the best!

  • sally_14743
    sally_14743 pinkcuppa

    Posted

    If you can totally rest at this point you could halt the symptoms and recover but you have explained you are not resting and I think it is dawning on you that because you are working you are not going to recover and that is depressing you. 

    This illness you have is post viral fatigue and if you rest you can recover within 6 months ..if you don't it becomes cfs chronic fatigue syndrome which you can recover from over years but you can get stuck with too. They are real illnesses and your GP can sign you off sick for post viral fatigue ..

    they are illnesses that entitle you to benefits ... 

    I think you know that if you don't stop working full time your body will force you to..it can get worse ..dizziness room constantly spinning ..unable to get out of bed ..having to use wheelchair ..go and have a good chat with your GP about cutting work down or being signed off sick for 3 months it may just be the ticket to avoiding a long term horrendous illness ...

    • pixie22
      pixie22 sally_14743

      Posted

      That's a very valid point that Sally makes, pinkcuppa, if you get the rest you need at this stage, it might prevent you developing chronic fatigue syndrome which could affect you for much longer. So I'd advise you to talk to your doctor about it and/or take up the point with the occupational health dept at work. Are you in UK? The ME Association (google it) might be able to help. But it is up to you to decide how much you can do, and how you feel.
    • pinkcuppa
      pinkcuppa sally_14743

      Posted

      Hi Sally, thanks for the reply.  I think you hit the nail on the head, I was off sick for a while but I didnt have much choice but to go back when I did.  
    • pinkcuppa
      pinkcuppa sally_14743

      Posted

      Hi Sally, thanks for replying.  Sorry if this is a resend as I hit something funny on my computer.

      I think you hit the nail on the head, I was signed off for a couple of months but I didnt have much choice but to go back when I did as I was getting reduced to SSP.  I am becoming worried that I won't recover as long as I'm working so much, but my GP/employer has not been supportive of alternatives, and I don't think I'll qualify for benefits as I've not been diagnosed with CFS/been ill less than six months.  

      I do appriciate your advice, as I am having some of those symptoms already, and I think you are right in that I may have to push my GP further for more help.

      Good luck with your recovery.  Thank you.

    • georgeGG
      georgeGG pixie22

      Posted

      I back up what Sally and Pixie wrote. I was initially diagnose with "space age virus" it preceded post viral syndrome it was so long ago. Advice was the same wrong advice still being given out. Take more exercise and you will soon be well. The opposite is true. Pace your exercise very carefully to avoid over doing it. You are the only one who knows when you have done too much. You pay with heavy interest if you do do too much.. I was sick for about 10 years and once I had worked out what to do it took almost as long. Even now I find it easy to overdo it but now the pay back is only two to three days. I have to be careful. There is no magic bullet. I needed to get home environment, water, food and air all suited to me. Yes, it was that difficult. If you wish to be tolerably well you need a lot of fortitude and determination and a constantly questioning mind to find out what you need.
    • pinkcuppa
      pinkcuppa pixie22

      Posted

      Hi. Thanks for the comment.  I do think its good advice, and I certainly will try and push for more help from my doctor.  I've had a little look at the website already and it is quite interesting. Its nice to be able to get support from people who are in similar positions.

       

    • artistmike
      artistmike pinkcuppa

      Posted

      A diagnosis of CFS is only available after six months and an exclusion of other conditions by blood tests etc. ... It's a ridiculous system but there you go, that's the situation we have to live with at the moment.

      I can't stress enough what others are saying, you need to rest up and take life easier NOW. It may be inconvenient in the short term  and take some reorganisation of yur life but your long term health is at stake and believe me, as someone who has had his life ruined by CFS for the last fifteen years, it's no fun. Plenty of others will tell you the same...

      You also need a doctor who takes you seriously and supports you better with work, referals to specialists, etc.. and if they say rest, do it, it's not optional but an absolute necessity.

      You have it in your hands to influence the degree of your own recovery so please do take that seriously, you don't want to be saying ten years down the line.. "If only"

      Oh, and best of luck, it can feel quite lonely coping with it yourself we know, you'll get a lot of advice from other sufferers here though and it will all help, if you take it.. .... biggrin

    • pinkcuppa
      pinkcuppa georgeGG

      Posted

      Thanks George, I will admit that was the same advice that I was given, build yourself up and you'll be back to normal in a couple of months, when really I should have realised it was going to be a longer process.  I'm already working on some of those things, food in particular, as I've found processed food makes things worse and it helps when I take supplements.
    • pinkcuppa
      pinkcuppa artistmike

      Posted

      Thanks for your comment, I'm definately looking at the advice of yourself and the others.  It's been really helpful to have the views of other people who have first hand knowledge and experiance, as the things online sometimes are a bit clinical and don't seem to tell me much.  I'm going to go back to my doctor as I think that will be a good first step.  
  • david59662
    david59662 pinkcuppa

    Posted

    Hi,

    In an almost identical situation, although 'ahead' of you in that i started out as PVF but this was 18 MONTHS ago now. I now have the CFS label after months of exhaustive tests which by all accounts on papaer i should be the picture of health. Before this illness i was a semi-professional trialthete these days i struggle to walk any distance, my legs feel so weak. I suggest you look up claiming personal independence payments as you can claim this even if you work. It might be useful to ask your GP about having CFS if you are concerned about a label. This illness forced me to give up my job as it was physical in nature but truth betold i could not hold down any job now as the fatigue is too extreme, i only have enough energy to make meals and look after myself. I've tried fighting this illness but i just get worse. I am hopeful i can recover still. Some alternative practitioners have said they believe i have adrenal exhaustion, you might want to look that up. Good luck, i hope you get well soon, some people do, some people like me it seems stay ill much longer.

    • pinkcuppa
      pinkcuppa david59662

      Posted

      Hi David, it does sound like our situations are quite similar, I'll speak to the doctor about CFS, though as artistmike noted above I may have to wait until six months.  I'll definately have a look into the personal independance payments though, as they might mean I can back off on working as much until I'm better recovered.  Thank you, and I hope you starting recovering more soon.
    • ben1977
      ben1977 david59662

      Posted

      Hi David, I find your story interesting as it sounds similar to my own although I think I might be a little behind you progression wise. The last time I felt 100% was September last year. I used to run between 20 and 30 miles per week to keep fit and had just completed the Great North Run. About a week later I had a dizzy spell at work and went home I'll, not like me at all as I usually work through anything. Over the next 3 months the dizzyness and blurred vision occurred more regularly.

      In the December I started with digestion problems and went into A&E with suspected gallstones. An ultrasound was clear. As my digestion problems progressed I was referred to a Gastroenteroligist who found a small ulcer during an endoscopy, great you may think all sorted. No, during this time my energy levels were falling week by week. I used to walk 2 miles to the train station daily and started to find this a daily struggle, so my Vitamin D was tested and found to be low. After weeks of high dose Vitamin D I am now off work and still weak and with poor digestion.

      I feel like my body doesn't have the energy to run properly. I am short of breath, weak and losing faith in doctors. I have had so many blood tests and I have now been referred for Chronic.

      I just wanted to speak to someone with similar experience. I miss my running and long for my old life back. I'm 37 but feel 87 as daily chores drain me! 

      My question is what happens if all your blood tests come back clear, what do the NHS do next?

      I will continue to fight but I would like some light at the end of the tunnel.

      Sorry if I went on a bit I hope you are feeling a bit better wish you the best with your recovery.

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