A teen with ME/CFS

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I am 15 years old and haven't been well for several years feeling fatigued, Joint pain, cold extremities, sore throat, swollen glands etc... I used to be so fit and active and lead a healthy life going out with friends and doing my dance classes. I then syacted to feel too weak to manage activities and stopped doing anything. I was told I possibly had ME a year ago but wanted another opinion so only received an official diagnosis in Feb this year. It is so hard trying to stay positive and feeling like I do. I love my crafts and have found doing that during good spells keeps me feeling a bit better about myself. My main problem is my social skills and loss of school friends. This illness has made me very isolated and I hate it.

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  • Posted

    It's important to stay positive Jessica and at your age you have good reason to be. A large majority of young people that contract ME recover both quickly and to levels at, or close to, where they were before they got ill.

    Learn to pace yourself and give yourself time to recover, that's important and although it may seem to take a bit of time, you have your whole life ahead of you to enjoy, so give yourself the best chance of that. :-)

    Keep up the craft when you can too, it was my art that helped get me through and don't worry about friends, you'll make more and enjoy life again soon if you're careful with yourself.

    Best of luck and we are all here when you have one of those days you just want to weep or moan. :-)


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  • Posted

    Hi Jessica,

    My heart goes out to you. I agree with another poster about staying positive. Since you are young, you have a good chance of recovering or at least getting much better. There is a terrific book named, Fight Fatigue-a practical guide to managing the symptoms of CFS/ME by Sue Pemberton and Catherine Berry. It really is helpful and the author is not trying to sell you a bunch of expensive supplements or cure you. It is a parctical approach to getting better. Pacing yourself is critical. Hope this helps. Good luck! KPD

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  • Posted

    Hi Jessica, I'm sorry to hear you're going through this illness. 

    Remember your worth is not defined by how much you can and cannot do (although it can feel like that at times!) 

    If you're not already, I'd recommend practising pacing yourself. It took me quite a while to learn and there's a lot of trial and error involved so don't worry if it takes a while for you to notice an improvement. Also don't feel guilty for resting and putting yourself first!

    With chronic illnesses like CFS it's also important to look after your mental health which can be affected by feeling so sick for so long. I went to CBT and bereavement counselling and found them really useful to help me cope with the grief, frustration and low mood I was feeling as a result of my CFS.

    Good luck and you know where we are if you have further questions or need a vent! smile

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  • Posted

    Sorry to heat that you're having a hard time Jessica. Generally, prognosis is thought to be better for teenagers with ME than adults (the body is going through a lot of changes at this time, and some of these seem to lead to problems which just naturally resolve over time). Being socially isolated at a time like this must be very difficult. Crafts is fine and all, but knitting is not normally seen as the highlight of a teenage social life. It is good that you've got some things like that which you can enjoy, but I don't think that there's any need to pressure yourself to stay positive. Sometimes trying to stay positive can be a strain in itself. In the UK there's been quite a lot of quackery which exaggerates the benefits of 'positive thinking' style approaches, particularly for ME (there was an article in the New York Times titled 'Getting It Wrong on Chronic Fatigue Syndrome?' which you might be interested in).

    ?Fingers crossed for your health naturally improving, and for you finding some pleasent things to do while ill. Hope that you're being kind to yourself about everything.

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