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    Energy

    Feeling tired quite often. what do take to help or do we just sleep alot? All the best for now Steve

    #2
    I can only go on what happened with me and suggest you might want to get your co2 level checked with the GP or nurse as mine was high and this made me so sleepy.

    As regards supplements I now take a really good brand of CoQ10 every day, but I have always used supplements and know they are not for everyone.

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      #3
      Originally posted by Stevedp View Post
      Feeling tired quite often.
      That's pretty typical for a neurological condition Steve and it's often a case of pacing yourself: using available energy wisely and recharge when necessary.

      MND is a hungry disease so you might need more calories, and with an emphasis on protein, or whatever - have you access to a Dietitian?

      If you've started taking Riluzole, that can sap your energy for a few months and, as mentioned, breathing function impacts on energy too. xx


      ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
      Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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        #4
        Hi Steve. I also take supplements in the for of b12 and I take a berocca every day. I also have a protein shake. I just purchase whey and had milk.
        Diagnosed May 2021 bulbar onset als.

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          #5
          Re B12: the best form of B12 is methylcobalamin, as a sublingual tablet, oral spray or drops - it's absorbed into the bloodstream much more readily in the mouth than through the stomach. xx
          ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
          Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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            #6
            My CO2 is fine, but I'm always exhausted. I sleep 10 or 11 hours at night and nap in the day given any opportunity. It's what stops me doing much. Very frustrating. I hope you find a way to balance your energy needs xx
            Diagnosis confirmed Jan 2022 (age 46) after several years ignored/ misdiagnosed.

            Symptoms began in left foot 2017. Now mainly left side, speech and some loss on right side too.

            Unable to walk unaided (powerchair user), poor speech, left hand behaves like a drunk toddler but generally positive and determined.

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              #7
              Ellie i take that form via drops under the tongue. Cherry Flavour 🙂
              Diagnosed May 2021 bulbar onset als.

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                #8
                Stevedp, I find the hot weather makes me more tired and doing too many stand hoists saps the energy. I dream a lot and my dreams are more interesting than real life . I do use my NIV on really hot days and it seems to help, so Ellie is probably right about CO2 levels, she usually is.

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                  #9
                  Thank you everyone looking into this issue now

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                    #10
                    I just sleep alot, I need a minimum of 10 hours like TinyLady. Then once every few weeks I need to sleep during the day for a couple of hours, then I'm OK for a couple of weeks.

                    I also have to pace myself, over the day and over the course of a week.
                    Started limping 2017, diagnosed August 2021. Wheelchair user and reduced shoulder function. Trying to be positive 😺.

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