I'm new on here, and I'm hoping this might help.

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Hi there... I've recently been told that I do actually suffer with CFS after a load of blood tests and stuff to rule everything else out. I've been suffering for 4 years, and it started with glandular fever. I have periods of time where I feel okay - maybe months but generally just weeks. Then there are times where I feel so vile I can't even put it into words. I ache, I tingle and my body just feels so heavy. I sleep for more hours in the day than I'm awake and I struggle so much. I don't feel like I've ever been okay.

In the last year, this has brought on anxiety and depression, and in the last 2 months, I've been at an all time low. My doctor suggested this forum to talk to others who struggle with CFS. Maybe even to get some tips.

Drop me a message or comment on this or something. I've got plenty of time on my hands.

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11 Replies

  • Posted

    Hi Amy

    CFS sucks doesnt it. I've had it for just over a year now. I consider myself to be quite lucky that my symptoms are milder compared to others so I'm still able to work full time and lead a normal (ish) life. But I do think the illness has robbed me a year of my life and I'm definately not the same person I was before it struck. Its as though its sucked all the enjoyment out of me.

    I can't offer too much in the way of advise as every case is so different. Personally I take sertraline which seems to help in some way. I didnt want to take anti-depressents but it made me so low that I felt I had little choice. For me sleep is the key. If I can get some good quality deep sleep then I feel OK the next day. I've been using an app on my phone which knocks me out within minutes. If you struggle with sleep then I would deffo say give it a go (Andrew Johnson Deep sleep)

    Anyway I hope you're feeling better soon :-)

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    • Posted

      Thanks for your reply... yeah, it sucks so bad. It doesn't matter what symptoms you get, I wouldn't consider anyone with CFS lucky in any way. Seriously though I applaud you for keeping on working full time. I like to think I could, but in reality it's a big no no.

      Believe it or not just your message has helped. I've been taking anti-depressants to and I wasn't all that keen. I do think they are helping a little though, and I would rather that than feeling so low all the time. I feel like I have a little bit more control with them.

      Sleep is a massive help for me too; there aren't enough hours in the day though. I don't normally struggle to sleep, but I have been at night recently. I sleep fine during the day... I might give that app a go, cheers. 

      Thank you very much, and good luck to you too smile

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  • Posted

    Hi. I too have only just been diagnosed. I completely understand what you feel. It is a great place for support. If you need a chat or advice or even a rant you can do so on here. I can offer support but others on here will give great advice. Never feel alone 
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    • Posted

      I might take you up on that rant offer some time aha. Thank you so much for your reply, and I'm here too if you ever want a chat... I'm not sure how useful my advise will be but yeah... aha 
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  • Posted

    Do you feel that you're improving, getting worse or staying the same ?

    I think a positive mind helps. I was at the Dr's the other day and saw a young girl, who obviously had cancer, being helped out of a car into a wheel chair by her parents but with a smile on her face. CFS really brings you down but theres people like her in a worse position fighting to just keep alive. I look back at that moment quite a lot when I feel bad about my condition.

    Its hard to do that though all the time- I was awake at 2am this morning with a headache struggling to get back to sleep and feeling sorry for myself. But todays another day, I have some music on and coffee on the go so its not all bad :-)

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    • Posted

      it depends on the day. I'm feeling much more optimistic today; but the last couple of days have been pretty bad. I go through phases of feeling better, I don't think I'm getting better though. I don't really know. I just want to beat this thing, unfortunately I know it's going to take time. 

      And you're totally right, a positive mind is everything. And I feel so selfish a lot of the time thinking of people with life threatening illnesses and then there's me, just drained and unmotivated.

      Good music and peppermint tea is my solution.. Or I call one of my friends at uni and talk about rubbish aha. But you're right there, it's not all bad.

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  • Posted

    Hey amycathy, we get it. Boy, do we hear you. I'm pretty new here, and in the last week I've seen your question more than once. I would highly recommend that you go back into the archives. If you just even looked at the threads in the last couple of weeks you would read GREAT advice. Check it out! Good luck, goood health, keep your head as high as possible. smile

     

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    • Posted

      It sounds so strange for me to hear those words :') I've tried so hard to explain myself to family and friends and I just get puzzled looks; they can't relate at all. Thanks though, I will definitely take a look back to see people's advice smile cheers
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  • Posted

    Hi Amycathy, welcome to the Forum of likeminded and understanding people who totally get-you.  I'm one of the long term sufferers of 20+years with this silly condition.  To be totally honest I'm not sure what life would be like without pain. I can remember life when the ME/CFS wasn't so bad, when I could work full time and then just suffer during and after it.  But it's always been with me as far back as I can remember (since I was 14).

    I would highly recommend antidepressants.  I know I need them or my mood flips all over the place, shouting at the kids at the flip of a switch to sucidal.  The Antidepressants have really helped me with the moods swings, life is calmer.

    I would highly recommend smiling.  It really can help you feel better especially if you can find something to laugh at.  Even when you are physically hurting if you are laughing it takes your mind off it.  I read loads of books - I read a book in a day again yesterday.  That's my escapism, the professionals just say it's trying to ignore it, but personally if you can't make it go away then ignore it works for me - oh and microwave heat packs.

    Once way to describe CFS/ME to someone who doesn't have it is to say " it's like being run over by a bus and then the bus reversing over you.  You then stand up and the same bus does a circle and runs over you again and then for the fun of it reverses". If you say that with a kind a silly grin I find that helps.

    Keep talking to us when you need us. x 

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  • Posted

    Sorry ot hear this.

    It is difficult having health problems while young, and all the the uncertainty and misinformation arround CFS can make things a lot harder too. I think it is best to think \bout what it is you really want to do with your time if your health does not improve (and I know this can be a horrendous thought). Focussing on doing what you want in the moment is a better idea than trying to plan for recovering or improving health at a time when we don't have good evidence to show how that people can improve their health. Focus on what is under your control, and hopefully things will improve with your health in other ways. It would be nice to have better advice for you.

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