Chronic Fatigue Syndrome - Suggestions

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Several months ago I was diagnosed with Chronic Fatigue Syndrome. I am a 23 year old male and have always been a very active person. I believe the cause of the condition to be Glandular Fever 6 years ago. Whilst I consider myself to be a mild to moderate sufferer of this condition, it is hitting me very hard in day to day life and is progressively getting worse no matter what steps I am taking to try and improve my situation. 

I guess what I'm looking for is reassurance that I will once again be able to take part in activities to my fullest capacity with a clear, unfoggy head and any suggestions as to how I can beat this condition would be much appreciated. Thank you!

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  • Posted

    "I guess what I'm looking for is reassurance that I will once again be able to take part in activities to my fullest capacity with a clear, unfoggy head and any suggestions as to how I can beat this condition would be much appreciated. "

    Sorry, I wish I could (for all of us). Lots of doctors will reassure you and encourage a positive mental attitude, but there's no good evidence that adopting positive beliefs is helpful, and rates of full recovery for people who've been ill for 6 years are not good.

    We don't know why it is some people suffer from ill health like this, and don't know what to do about it. I would be cautious about following the advice of others, and check to see that there is good evidence to suggest that you doing what they say will be helpful for you. Other than that, you might be best just focussing on living your life as best you can while ill.

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    • Posted

      Hi Fidd

      I have to say.... I believe PMA is a must with CFS because when life is tough and, in the end, as you quite rightly hinted, you are on your own making decisions about your life at a really critical time.

      No one is saying it is a cure but when everything is crashing down around you, it's helpful to smile, laugh and feel in control.

      Also, unless you use trial and error, you are never going to find out what works for your mind and body.

      I am trialling Sertraline, the smallest dose, to improve my body temperature changes and my foggy head...and , it's working for me.

      i would never say to someone, it will work for you because that has to be. their choice.

      No doctor told me to try it...I asked my doctor would he prescribe it for me and he agreed.

      Just a few words I wanted to share with you.

      I am lucky, I am beginning to feel better, day by day.

      I wish you well .

      Junny

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    • Posted

      No-one has a problem with smiling and laughing, but when making critical decisions about your life I think it is important to focus on thinking as honeslty and clearly as possible, working to avoid positive or negative thinking distorting your understanding of your situation. You should only feel as in control as you truly are, and it is dangerous for people to be encouraged to belief that they have greater control over their ill health than they truly do.

      We are lacking good data on recovery rates from CFS, but currently the best we have is probably: Cairns R, Hotopf M (2005). A systematic review describing the prognosis of chronic fatigue syndrome. Occupational Medicine 55.

      Best of luck to all those with CFS.

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    • Posted

      Hi again Fidd

      I understand your opinion and respect it. however, when you are sharing experiences with others, most people want advice or pointers...tips and examples. The only fool is the one who believes that your way is the right wad !! Of course not.... I think that you need to think outside of your own belief system because we don't all have the skill that you refer to not the knowledge or ability to control one's own journey through life at times of crises.

      I also think the critical element in decision making at this time is removed for all of us because we just do not understand ME/CFS and that's those in the know.

      If one person has recovered from this debilitating illness (and we know that to be true) then that tells us we can all live in hope and continue in our search for freedom from it.

      I am lucky; I know so many people with the illness with years of experience so feel that I can offer help and support; share my knowledge with others but it really is more about building confidence again not pushing people in one direction or another.

      We all need to respect someone's wishes, surely and , there are many doctors out there who get it right most of the time so respect to them !

      I hope Matthew remains open to suggestions and involves himself in discussions on this site. He will be a wiser man if he does smile

      Jinny

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    • Posted

      Most people want advice and tips... but sadly we do not have good evidence that the advic and tips available are actually helpful for people. I think it is important to be honest and clear about this. A lot of patients waste a lot of time and effort on things which they had been told led to recovery for someone-or-other, when these things never had any good evidence of value, and can easily end up sucking people's efforts away from other things in their life.

      Some people will be happy to devote their time and money to speculative interventions with no evidence of efficacy, but we're all at different stages in our life and all have different preferences, and I think that it is important that people are able to make informed judgements of their own rather than having people promote positivity unsupported by the evidence that risks being misleading. We should be honest about the uncertainty around CFS, and recognise the possibility of good and bad outcomes, and how little we know about how to change the illnesses course. I think that there are always reason for hope, but that this hope should again be reasonable and based on the available evidence.

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    • Posted

      Thank you for your responses, much appreciated. I can relate to both sides of the argument here having spent a bit of time doing both trying to enjoy life and find solutions. But I am now at a stage where the things I usually enjoy doing, I no longer can as it is a struggle to do so. So I think my aim has to be now trying to find out what has worked for other people so I can focus on using their experience in order to get better, albeit I may be wasting my own time in trying some of these things as different methods work for different people.
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  • Posted

    Hi Matthew

    Sad you have CFS because it can be soul destroying particularly when you are young. I am 57 and retired so have lived my youth, and to the full; probably more than I should have but, as you know, if you are particularly active, it just comes naturally.

    I know people in your position and they have all recovered (family). If I have learnt anything,.....to succeed, assuming you have no other medical issues, you must look inside of yourself.

    There are so many obstacles to overcome with this condition, it acts like a dog with a bone.

    Arm yourself with knowledge, read up on it, Google it, look at Utube, look on EBay for texts (up to date or not, textbooks still hold today as we have moved on very little over the years). You will hear about experiences, success stories and useful techniques.

    That gives you a different perspective....helps you to place yourself on the spectrum, so to speak.

    I believe, once you have reached your worst, you will start to get better; It's about finding out where is your worst.

    I have made mistake after mistake, I think because I have spent most of my life shying away from routines. Routine will help you.

    I have had 3 challenging months and only 2 days I can remember as a '10'; a brill day.... and would you believe it, I lost my discipline for just hours and set myself back for days !!! It' s crazy....

    If you can look at life as broken down into days and hours then minutes, you begin to break down activities. into small steps, then you will understand the idea of pacing.

    I signed up at the local Leisure centre for swimming 3 months ago and really believed that I could do it. I soon realised it was the preparation around the swimming that I could not manage; driving there, cfanging, washing my hair, drying myself and driving home. It was all too much.....and I just would it accept it. .......silly me....I am in a better place now.

    Sounds odd but for me......only me....I shower in the morning, rest, get dressed ,rest, dry my hair, ..rest...and so on.

    You have to find out where your baseline of activity is at the moment !!!

    I hope I have not dampened your spirit too much. Remember we are all unique so your experiences are going to be different to mine but at least you get an idea of my life with CFS.

    I am strong, have supportive family behind me, go to monthly support sessions through the NHS and am happy. I use PMA strategies always.

    Have a look at Transendental meditation ....

    Good luck Matthew.

    I wish you a speedy recovery and hope you hear many stories in this site of other people's experiences.

    I think this site is amazing smile

    😊

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    • Posted

      For me, the setbacks is up there with the hardest part of CFS. I can't say I've had a day recently where I've felt great, but I've had days where I've felt I can get up and do things only to be knocked for 6 the next day.

      Having only joined the site today, I agree that it's brilliant. Very useful.

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  • Posted

    By the way,

    my sister has had CFS for 16 years and she has recovered in that she is now back in work and a high powered job at that.....also my cousin has had CFS for 12 years and she is now recovered.....but both of them say the same thing..."You are never without it, you just learn to read your body!"

    They are the lucky ones...let's hope we are too.

    Junny

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  • Posted

    Welcome. We are a group that suffer together in this ailment that is a terrible blight. As you review past discussions you will come across my testimony. I did recover but have had to pace myself carefully ever since.

    I would recommend to your attention to a recent discussion opened by Frustrated. She throws some light on the origens of CFS amongst other ailments and hence the dificulties of finding a cure.  

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  • Posted

    I have to agree with Fidd's evaluation to be honest, with one proviso being that you do at least have your age on your side and statistically it's known that that is an advantage.

    In stating that it's getting progressively worse you're rather admitting that you're not adapting your life to take account of the CFS, rather, expecting it to fit in with what you want your life to be. Understandable, but most of us have found that it's only when you stop fighting that you start winning.

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  • Posted

    It would be really nice to say yes but in my experience that will be down to you.

    I am getting back to partially where I was before this hit, but its only been in the last year or so, when I stopped the boom and bust cycle and started pacing my activities. For me pacing has been the key, learning to say no to activities, limitig what I do and giving myself control over when I do things, that can be pretty hard if you have a job and family.

     

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  • Posted

    Hello, I'm 24 and was diagnosed 2years ago, being struck with such a debilitating illness at such a young age is so unfair when you should have the rest of you life ahead of you to live as you so wish. I found that once I had accepted the condition I could start moving forward and put my life back on track as much as possible, as m.e fluctuates so much the best advice I can give is listen to your body, if it's telling you to rest do so, if you feel up to going for a walk do so, if there is a day coming up that you know you will be busy and need energy get plenty of rest the day before and the day after, and where possible avoid stress at all cost as for me I find being stressed and worried very draining. Find your limits and stick to them even if your having a really good day. I hope your symptoms improve smile
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