1. Community
  2. Brain and nerves
  3. Chronic Fatigue Syndrome

Diagnosed

Posted , 11 users are following.

Jl26
Jl26

hey guys after a long battle with tests etc I was diagnosed on Thursday with CFS/M.E by my gp. I suffer with almost all of the diagnostic symptoms. She has referred me to start CBT therapy however I am debating weather this will help at all. I'm still working and haven't spoke to my boss about it as I haven't seen them but I don't know where to begin on this situation. This is all so new to me everyone has been so helpful on here so just want some insight on how to approach working. I'm a moderate case, having days off here and there and not leaving the house on days off. Some days I physically can't do a lot, others I'm a little more mobile. My job is quite full on, I'm always on my feet and having to concentrate on documenting information. Would a go sign you off if your not fit to work anymore? I know it sounds silly but it's all so new to me. Thank you x

1 like, 13 replies

13 Replies

  • dawn97
    dawn97 Jl26

    Posted

    Hi jess , I'm pleased to hear you've now got a diagnoses it feels good to have a  Name  & a reason for all our symptoms  !!! 

    As far as works concerned if you feel you can keep going that's the best thing to do at the momment take it month by month , if you are having to take days off talk to your boss & maybe drop your hours ? It's different for everyone but I'm certain you will know when you can't do it anymore !

    I had to give up work but many people are still working full time years after diagnoses 

    take your time & see how it pans out don't make rush decisions ,I know its scary but try not to worry !!! I don't know what cfs therapy is like I've never been offered it but I believe any things worth a try !!! Good luck dawn x

  • mary_24931
    mary_24931 Jl26

    Posted

    Hi Jessica 

    Sorry to hear of your predicament. I would say if you can carry on working by resting as much inbetween times as possible it woukd probably be best to do so. I lost my job due to redundancy two years ago and since then my condition has worsened. I think the shock of losing my job made me very low and my daily structure was suddenly changed, with nothing to get up for. I was only working part time but I haven't been able to find anything manageable since. So perhaps cut your hours if possible and definitely rest as much as you can. Make sure you take regular  morning, afternoon and lunch time breaks! I am currently atending a CFS self management course which talks about therapeutic rests during the day, which can be as little as ten minutes each time. It gives your body  and mind time to just 'be' and really does help. I wish you all the best. Mary 

  • Fidd
    Fidd Jl26

    Posted

    It seems that CBT is now more effective for CFS than placebo, but that there's a lot of spin and hype for it.
    • Fidd
      Fidd

      Posted

      Typo. That should be 'no more effective for CFS than placebo'.
    • ninjax
      ninjax Fidd

      Posted

      I had a few CBT sessions. Didn't make much progress but then a month later I had more sessions with another doctor.

      So, I'd say it may or may not be effective depending on the doctor...

  • kathy1122
    kathy1122 Jl26

    Posted

    Lots of Short breaks, laying down shuting eyes breathing in to take up more oxygen for at least 10min throught the day is simple but very effective drink lots of water and take a flask of fresh jucings and lots of high protein snacks, its all about management.
  • Tea_belly
    Tea_belly Jl26

    Posted

    Hi, this is my first time on the site. I have had cfs for just over a year. I tried going back to work on reduced hours but I couldn't manage so am currently off sick and on half pay. I had CBT at the end of last year and found it useful. It didn't improve my symptoms but made me deal with things better mentally. Hope this helps , sarah x
  • ChrissyC
    ChrissyC Jl26

    Posted

    I agree with Tea belly. Cbt won't wave a magic wand and sort it but it IS useful and honestly we need all the help we can get. It will give you some insights and help you understand yourself a little more. It might stop you asking yourself 'well why this, that or the other?' quite so often and help stop you beating yourself up all the time for stuff you can't do. Well that's what I found anyway and put it this way, it can't do any harm so it's worth a try. The bottom line was whether it was worth the precious energy I used to access it and for me it was.
    • Fidd
      Fidd ChrissyC

      Posted

      It's sold as a way of improving symptoms, and those making money from it claims a recovery rate for CFS of 30-40% - despite the evidence that is cited for this claim clearly not supporting it. If someone is making money from CBT for CFS in the UK and yet not publicly calling for the release of the protocol defined outcomes for the PACE trial, then I think that they are badly letting down patients.

      Googling "Selected data on PACE Trial participants" will illustrate the ammount of work some patients have had to try to go through in order to let us have access to useful information on the effects of CBT for CFS.

    • ChrissyC
      ChrissyC Fidd

      Posted

      You may well be right. I was offered it and I won't turn down anything really if I have enough reserves to try. As I said it's certainly not a magic cure all. All I know is that I got SOMEthing out of it, enough for me to be worth the effort. It's just my personal experience I'm offering.
    • Fidd
      Fidd ChrissyC

      Posted

      Pleased you found something of value.

      I just think that a lot of the claims they make about it's value and misleading, and serve to harm patients. It really bugs me. More needs to be done to try to hold to account those making money from misleading claims about their ability to help patients imo.

  • Tea_belly
    Tea_belly Jl26

    Posted

    Hi,

    I agree that many people say to try allsorts of things thinking they will cure us or improve our symptoms and yet it seems to be documented that there is no cure. All I can say is the CBT didn't improve my symptoms just my mental relationship with CFS. However work seem to think i need some treatment for my condition and have asked my GP to refer me to a specialist. I am waiting for my appointment but am not expecting they will make me better but work seem to think they will - no one really understands this illness and that makes it difficult for work to know what to do with me. Sarah x

    • Fidd
      Fidd Tea_belly

      Posted

      I am concerned that there's a bit of a negative cylce here, in which exaggerated claims about patient's ability to recover if they improve their cognitions and behaviour then leads to strange and unfair social pressures to engage in treatment and approaches like CBT, and the CBT therapist can then take credit for using the authority of their position to relieve some of those pressures.

      So long as these therapists are failing to speak out about the way in which data is being spun, and call for the release of results for more useful outcome data, it seems to me that they are part of a system causing more harm than good.

      Sorry to hear that you're caught up in this nonsense. I know that it is difficult, and hope that things do improve for you soon.

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.