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Thread: Fatigue

  1. #11
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    Cheers Andy

  2. #12
    Forum Member Lynne K's Avatar
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    I know how you feel John. I only had 4 hours sleep last night. It took me nearly 5 hours to get to sleep and I woke up an hour later. I went to the bathroom (2 or 3 times per night is usual) and also did some leg stretches to try and ease my stiff uncomfortable legs. My doctor wont prescribe sleeping pills but when I tried them years ago they didn't work for me anyway. Even before I was diagnosed with MND I had sleep problems but I'd worked hard to fix it and had had some success. MND has messed it all up again.

  3. #13
    Forum Member Terry's Avatar
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    Hi Lynne;

    Have you tried Talking books from the library. Not much good for cramps etc, but they do help get your mind off of things so you maybe get some rest.

    Love Terry

  4. #14
    Forum Member Ellie's Avatar
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    Quote Originally Posted by John Mc View Post
    That’s the thing Ellie I’ve just been told I have MND not been informed as to which variant, don’t suppose it makes much difference, or does it ?
    It makes a HUGE difference John.

    For example: PLS is not necessarily fatal and has different symptoms to ALS. Likewise, UMN dominance usually means a slower progression and fewer LMN-related symptoms.

    Therefore, it is important to know what you're up against.

    Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  5. #15
    Forum Member marieline's Avatar
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    hello John,
    debilitating fatigue, (cramps, mood swings, fasciculations), depending of course of how your much you do during the day seemed to dominate during the first 5 to 6 years with MND. with time you learn to pace yourself and also look into your nutrition.
    Now 12 years ahead i do not have fatigue as a symptom anymore. Maybe the body seems to accommodate after some times. But i take magnesium, 3 times a day the first 8 years, now just once a day at night. drink plenty and eat potassium rich food. i drink fresh coconut water, eat bananas etc.
    You need to see what works for you. though i can linked my fatigue management to the general anaesthesia where Propofol was used. so if you have any surgery lined up, make sure to look into Propofol as a muscle relaxant.
    best wishes
    Marieline

  6. #16
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    Hello ,If the NHS respiratory testing going to take a while, you can purchase an Oxymeter from Amazon or Ebay. They are fairly accurate. We have compared ours with the paramedics one whenever we have to call them. It also shows the haert rate. Usually cost below 20.00. As far as I am aware SpO2 at or above 95% is OK.
    https://www.amazon.co.uk/Oximeter-Di...words=oxymeter

  7. #17
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    Hi All, my husband has had MND for four years and the fatigue is now a big problem which has reared its head. I believe that as all respiratory tests show his levels to be good that it is because every thing now takes three times the effort. My husband now snatched sleep when ever he feels fatigued and this allows him to enjoy his wake time more. It took a while for him to stop fighting the tiredness as this was causing him more distress. Take a five minute snooze and recharge x

  8. #18
    Forum Member Ellie's Avatar
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    Hi Jane and welcome to the forum.

    Thanks for your post - yes, power naps are great!

    Feel free to post in the Introduce Yourself section *if you want to*, no pressure... You've probably got more good advice to share from the last 4yrs.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  9. #19
    Forum Member Terry's Avatar
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    Hi Jane and welcome to the forum,

    I think most people can benefit from power naps, in normal people it is good to keep them to 5 to 10 minutes.

    When I feel quite tired, I often play speed chess but I reckon that a power nap would be better.

    Best wishes, Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

  10. #20
    Forum Member Lynne K's Avatar
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    Good idea Terry. I will try that as soon as I can get to the library. Sorry for the delay in replying.

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