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CFS becoming intolerable

Posted , 12 users are following.

melody03101
melody03101

I was diagnosed with CFS about 10 years ago. People seem to think it means im a bit tired! Its getting worse and im aeriously struggling to function. There are no longer good days. Ive had a cold for about three years. I dont eat properly and run my own business which is being affected as i have no energy for it but have no choice but to turn up and open up, its a tearoom and bar. I dont know what to do anymore.

2 likes, 29 replies

29 Replies

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  • elaine62759
    elaine62759 melody03101

    Posted

    Sorry to hear how you are struggling. I'd advise you to try and think how you can change your life as soon as possible. I make the huge mistake of pushing myself trying to keep working and ended up having a huge relapse, lost my job and have never been fit to work again. Please don't make the same mistake as me. Is there any way you could get someone in to help you run your business or reduce your hours? Is there anywhere you could lie down for rest breaks during day? (even on floor on a yoga mat would do). I find relaxation CDs really helpful for a quick energy boost. You could listen to one through headphones on MP3 player/phone,etc for 20 mins. When I listen to one I always feel like I have a bit more energy as if I've had a sleep. A healthy diet is also really important. Smoothies are quick and easy to make (as Toni also said). Even snacking on slow releasing energy foods like oatcakes or dried fruit and nuts might help. I also found CBT really helpful. Your GP might be able to refer you for this. You might not have a cold, you could have an allergy to something or rhinitis - you should mention this to your GP. I also find gentle yoga really helpful. It is really important that you try and get a better activity/rest balance in your life or you run the risk of totally burning yourself out. Good luck.
  • Jk1952
    Jk1952 melody03101

    Posted

    Hi Melody, just wondering how you are doing, (as I'm sure others are too.) My heart goes out to you.
    • melody03101
      melody03101 Jk1952

      Posted

      Hi everyone. Sorry I hadnt replied. I had a breakdown and had to walk away from my business with a pile of debts and no home. I begged my GP for help. He said CFS is a disease of the mind that only exists in the west. I ended up in hospital twice as I had enough. Still no help. Now trying to manage with no money and sofa surfing. I want to thank you all for your advice. I am looking to sign up to a new GP this week.
    • toni62403
      toni62403 melody03101

      Posted

      Hi Melody, I am so, so sorry to hear about what's happened to you since you last posted. *Lots and lots of hugs!!* I just want to emphasise: CFS is not all in the mind! I don't think doctors realise how damaging this is to those of us who live with CFS. I hope you manage to find a more CFS-literate GP. I sought counseling for my CFS with a bereavement counsellor, I don't know if something like this might be useful for you but I found it extremely helpful when I was going through a really hard time recently - just having the opportunity to have a good cry every week with someone who was outside the situation really helped. Take care of yourself and please know that we are all here for a chat whenever you need one!

    • melody03101
      melody03101 toni62403

      Posted

      Aw thankyou. I tried counselling but found it irritating. Will be looking for a new GP. Its catch 22. The thought is an effort but I cant carry on like this. X
    • elaine62759
      elaine62759 melody03101

      Posted

      Hi Melody, I'm so sorry to hear what an awful time you are having. I would definitely get a different GP. CFS is not 'all in the mind' - it is a real physical illness!!! I know from experience that many GPs do not understand but when you get one that believes you it can make all the difference. You could also maybe try and see if there are any local M.E./CFS clinics you could attend to get help and support from others who understand. You can get a lot of good support and advice on this website. You should also find out if are entitled to any benefits or help with housing. Will be thinking about you.

    • melody03101
      melody03101 elaine62759

      Posted

      Thankyou. I did try to claim disability but scored zero. The condition is so misunderstood. Cant get help with housing unfortunately. X
    • melody03101
      melody03101 elaine62759

      Posted

      Hi. I have managed to hnge GPs and have an appointment Monday. I also called my prwvious doctors and asked for the results of my Thyroid blood test. Having been told my bloods were checked for everything this year, I was shocked when the secretary said my last test was in May last year. She said the results were normal. My TSH was 0.8 and T4 was 12. Does anyone know if this is normal? Im so sure my symptoms are down to my Thyroid but wanted other opinions before pushing the new GP on it

    • elaine62759
      elaine62759 melody03101

      Posted

      I've had my thyroid tested a few times over the years but it has always come back as normal. A lot of conditions can have similar symptoms so it can sometimes be difficult to diagnose an illness. I would think blood tests should be pretty accurate though. Good luck with your appointment on Mon. Hopefully you'll get on better better with a new GP.  It might be helpful to write down points you want to cover so you don't forget to mention anything.

    • Jk1952
      Jk1952 melody03101

      Posted

      Hi melody, how are you going on? I'm having trouble with my iPad. Keeps reloading. I'm not ignoring anyone 😕

    • melody03101
      melody03101 Jk1952

      Posted

      Ive seen a new doctor who seemed really nice. More blood tests and Amitriptyline to take at night as a trial. Its so nice to be listened to smile

    • elaine62759
      elaine62759 melody03101

      Posted

      Glad you got on well with your new doctor. You probably feel at rock bottom just now so try and see it as a fresh start and hopefully things will get better for you soon.
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