Patterns of ME

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We all seem to be suffering this week, is there something in the air? sad

As a newbee I want to ask the more experienced ME'ers (?) do they think ME has a pattern of flare ups and remission or are the flare ups always related to exertion? Or even worse, do you feel c*** all the time? :!:

I am having a bad week but would say that I have not been doing too much :cry:

Have woken up wet through 2 mornings running... night sweats!! My bladder is the one thing I still have any control over. :diva:

Please help!!!

Dale xxx

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7 Replies

  • Posted

    Hi all

    Just wondering if any of you have tried this....

    http://www.cfsandme.co.uk/faq.html

    I sent for a sample pack which arrived this week - for my mum, not me.

    Wondering if you could buy the ingredients from health food shops cheaper.

    Thanks

    Melbi x

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  • Posted

    I am rather sceptical. I have tried various products which make beneficial claims and I have always been disappointed. There will always be someone it works for, and they will endorse it. There will also be someone it doesn't work for and they will pooh pooh it.

    Fact of the matter is there is no cure yet for ME/CFS. If something gives you relief then good, stick with it, but don't tell everyone it will relieve their symptoms for there will always be disappointments.

    To answer the original question, in my own experience I have always 'deserved' my relapses through not paying sufficient attention to pacing during the remissions. Mental or physical overexertion will always bring about the (un)desired effects :roll:

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  • Posted

    Hi Dale

    I'm quite sure that if I spent my days just pottering around the house doing very little physically or mentally I would probably mostly feel okayish - but what sort of life is that. I still find it extremely hard to pace myself and pretty well know when I have overdone it - and that I can expect to feel poorly either later that day, or more often the following day.

    Having said that I don't think - 'right tomorrow is going to be a poorly day' - quite the opposite -, I say to myself, 'right, I'm not going to let it get me this time'. Hope this all makes sense, - think I've confused myself!! :?

    I find with my ME how I feel changes not only from day to day, but minute to minute - and this is what is so hard for others to understand.

    Strangly enough, if I wake in the morning feeling totally unrefreshed, aching all over and generally yukkkk ... although it takes time to get going I quite often feel better as the day goes on, whereas if I wake feeling reasonable and clear headed then it's downhill all the way for the rest of the day. :? Very strange.

    Something seemingly very trivial can often trigger off my feeling really poorly - a long phone conversation, loud noises, intense smells or just a prolonged conversation with someone - I can actually hear my voice getting wearier and wearier. In fact, just concentrating on typing this has made me feel weary (don't know why I couldn't have made it simpler! :roll: )

    Hope this answers your question - but I can't remember what it was

    now!! :doh:

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  • Posted

    Hi Melbi

    Thanks for the information - I will be interested to hear how your mother gets on. Like Alicia I'm a bit sceptical, but agree that possibly some may find it helps. I have been taking Co-Enzyme Q10 for the quite some time now and I am sure my energy levels have improved - but then that could be because I have given up work! :?

    But thanks anyway.

    Katie smile

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  • Posted

    Hi Katie

    We must be on the same wave length cos I understand what you are getting at :lol:

    Especially the bit about waking up well and going down hill and vice versa!Will have to practise my pacing!! :?

    Thanx for the reply

    Dale xxx

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  • Posted

    I am a mum of a teenager who lost all her secondary school life due to being bedriden with severe M.E

    from experience I dont think flare ups occur unless the sufferrer has over done things ..they may not be physical but can also be mental ..we may not realise we are over stressing our selves tho...like..

    my daughter who is still poorly but can sometimes use a walking stick instead of her wheelchair .

    Sometimes she cant do anything and is "brain fogged" so much ...meaning she cant comprehend,remember nor respond properly..often she cant remember the words she needs...this has nothing to do with her past/recent physical activity and she cant relate it to her mental activity either..

    sometimes just listening,thinking or trying to be part of a conversation is all it takes to over do her mental capabilitiy with this wretched illness ..and this info comes from a youngster who is very clever and got a B in her only gcse with only three months of studying and revising..

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  • Posted

    Hi Everyone

    Like the last posting I too suffer greatly with the cognitive things! Thats in itself is debilitating! See my recent posting "they STILL dont get ME"

    Donna x

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