Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Newly Diagnosed and Devastated

Discussion in 'General ME/CFS Discussion' started by sickanon, Sep 25, 2017.

  1. sickanon

    sickanon

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    After being ill with Glandular Fever and failing to recover after nine months, my doctor diagnosed me with Chronic Fatigue Syndrome. I have been told to contact the Irish CFS/ME association to see a specialist. I am absolutely devastated. I don't know how I am supposed to live the rest of my life like this. Can anyone who has lived with this illness longer give me any practical advice? I am not prepared for being disabled aged twenty three. Am I eventually going to end up bed bound with this illness?
     
  2. trishrhymes

    trishrhymes Senior Member

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    Hi, @sickanon . I'm sorry to hear you are faced with an ME diagnosis. It can be frightening when you read of other patients who have been ill for many years.

    First let me reassure you that some people recover fully and others improve gradually over time, so you are not in a hopeless situation at all. Only a small proportion of patients spend a significant amount of time being bed bound - it is not inevitable. And there is good research happening around the world which should lead to better diagnosis and treatment.

    The most important thing at this early stage is to get as much rest as your body needs, even if that means putting your life on hold for a while. And don't get talked into doing exercise based therapies.

    You may find this helpful in learning how to pace yourself using either activity and symptom diaries or an electronic activity and pulse measure to help to tell you when to stop and rest.

    http://www.cfidsselfhelp.org/library/topic/Energy Envelope and Pacing

    Best wishes.
     
  3. Mithriel

    Mithriel Senior Member

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    The outcome with glandular fever is much more promising than with other causes and many of the people who fully recover have had that. Also you are still young and that is good too. Getting adequate rest and listening to your body, as above, are really important, but the most important thing is to be careful when you start to feel better! That is the point where people (myself to my regret though I did not know any better then) who are desperate to do things - live a life - overdo it. Go canny and you can still have a decent life as ME can be managed even if it does not go altogether.

    Just remember that being careful and aware that there is no rush to life, you have many years left to do all the things you want even if you have to spend a few years taking things easy.

    Also, look up the work on CPET testing, the Workwell Institute is a good place to start, and use a heart rate monitor. Our aerobic respiration system is broken so we have to use the anaerobic system if we do too much. It is the byproducts of that that lead to damage.

    And keep in mind that it is not your fault you are ill and avoid spending a fortune on "miracle" cures that well meaning friends and family encourage. There are a lot of people out there just ready to sell quackery to us.

    Oh and in case you don't know. STAY AWAY FROM GRADED EXERCISE. That is the thing most likely to make you get worse.
     
  4. belize44

    belize44 Senior Member

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    I agree with what others have said here! If I could do it all over again, I would have done things differently when I first became ill; if I had, there was a greater chance that I might have improved instead of permanently damaged my health. Of course I didn't know what was wrong, but I was always a type A personality and was also going through some major stresses at the time. I hope that you will be kind to your body and allow it plenty of time to heal!
     
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  5. alex3619

    alex3619 Senior Member

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    Welcome to this forum, @sickanon .

    You are not alone. You will find acceptance, support and information here.

    Most recoveries take place in the first five years. You are still very early in the process. Indeed it may not be the case you have CFS because in a small percentage of patients who have post viral fatigue it can persist for many months. I have myself had it persist for eight months, and that was on top of having ME.

    Observations made at the Royal Free Hospital outbreak, post 1955, indicated that the patients who did best were the ones who rested the most in the early stages. The claims that graded exercise is the best approach are opposed by the hard evidence, and now a growing number of very respected scientists and doctors. Gentle activity that does not exacerbate your symptoms might be useful though. For most of us that means that most important things can be done, but paced to avoid symptoms.
     
    Last edited: Sep 28, 2017
    Jan, Barry53, merylg and 3 others like this.
  6. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    Not being well nine months after glandular fever is very common. Even I had disabling fatigue at six months and from nine months on I have been completely healthy bar a few other unrelated illnesses. You might want to look at what is called the Dubbo study done by Andrew Lloyd and others. It gives figures for how long people are fatigued after glandular fever if I remember rightly.
     
  7. daisybell

    daisybell Senior Member

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    My younger brother was ill with glandular fever for well over a year. His health took a fair while to really return to normal but he is completely fine now and has been for years. He was probably more susceptible to getting ill for several years afterwards, and he got tired easily.

    Rest, rest, and rest. Eat well. Try not to worry! Wishing you all the best
     
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  8. sickanon

    sickanon

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    Thank you for all the supportive messages. I feel a massive sense of fear and regret because I didn't quit my job when I was diagnosed. Up until recently I worked as a graphic designer, until I was made redundant. I fear that because I didn't stop working, I have now done permanent damage to my health. I have had to move back home with my parents, and spend all my time resting, but I fear it's too little too late. I am tormented by the thought that if I had only realised at the beginning of the illness how serious the consequences of Glandular Fever can be, that I might have made more sensible choices and avoided developing a chronic illness.
     
    Wonko, Invisible Woman and Barry53 like this.
  9. Skycloud

    Skycloud Senior Member

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    Fear and regret are understandable, being ill as you are there would probably be something wrong with you if you didn't feel that way. You're not the only one to think thoughts like that. This is not your fault though. You did the best you could on the information you had at the time. Try to think of it as a new start from now; your new job is to be kind to yourself!
    welcome to the forums.
     
  10. Kenny Banya

    Kenny Banya Senior Member

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    Not attacking the messenger, but you are aware that Lloyd heavily endorses GET & CBT now?
     

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