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    Fatigue

    It hit me today just how debilitating fatigue is. A previously simple trip to the GP for a blood test( hopefully pre Rilluzole) I found exhausting. I was already tired & hot & bothered so that didn't help.

    I just wonder if anyone has tips for managing such overwhelming tiredness? Apart from regular rest....

    I feel I should be doing the Neuro rehab exercises more but it's a vicious circle when so weary.

    Sorry I sound a bit whiney...well more than a bitπŸ˜‚


    Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. Generally weak. Mostly terrified.​​​​​​

    #2
    All I do is sit on my trusty sofa removing clothing and not moving for a while. πŸ˜πŸ˜˜πŸ˜πŸ€—xx
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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      #3
      Originally posted by matthew55 View Post
      All I do is sit on my trusty sofa removing clothing and not moving for a while. πŸ˜πŸ˜˜πŸ˜πŸ€—xx
      Sound advice matthew55 πŸ˜‚πŸ˜‚πŸ˜‚ I had a nap it helped πŸ˜΄πŸ‘
      Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. Generally weak. Mostly terrified.​​​​​​

      Comment


        #4
        Hi Linda,

        Sorry youre feeling fatigued... im sorry too that I think its just part of MND. I do have regular blood tests to ensure there is no other cause like a vitamin deficency so its worth checking.

        I tend to conserve my energy for things that are important to me for example seeing family. Obviously if I have a hospital appointment thats not possible but if I have a busy day I don't arrange anything before of after.

        I try to πŸ’€ 😴 well and I feel so much better after a good night but again that's not always possible so I try not to stress about it.

        I'm no expert on exercise and MND and im sure it is beneficial for some people. However, I would rather use my energy on things I enjoy .

        Take Care and rest up!
        Love Debbie x

        Comment


          #5
          Deb thanks Deb I think you're probably right fatigue being part of MND. I will have to learn to plan ahead. I think today the effects of a poor nights sleep got the better of me. After a quick nap I felt better. I've followed other threads too and ordered supplements that might improve my energy levels. We live in hopeπŸ€—πŸ˜˜
          Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. Generally weak. Mostly terrified.​​​​​​

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            #6
            Hi LindaB,
            initially after diagnosis 12 months ago I didn’t seem fatigued.However as MND progressed in my legs and muscle wasting became more evident in my legs , bottom etc I do get fatigued.I also more recently get swollen feet as mobility is down to a couple of metres with frame and supervision or wheelchair.
            I do a few exercises in the morning on the bed with legs and arms really to try and reduce spasticity .
            I do lie on bed if possible for an hour reading in afternoon or morning as need to elevate my legs.
            I love seeing friends and family so I factor that into my days.
            Fatigue can be part of MND so advised to maintain nutrition(poor appetite these days) plus fluids.
            OT said to see it like a bank of energy and with each task it takes more effort than those without MND .If having friends in afternoon then I have a quieter morning..it works for me.
            Hope you work out what suits you best and hot weather wears me out even though I do very little.
            Best wishes
            Mary

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              #7
              Stephen always complains of fatigue. He rests but there doesn't seem to be any stored energy. I make sure he's fed and watered. He sleeps well. Extra vitamins. It doesn't seem to make a difference. He wants to do things and go places but I know it will be too much for him.

              😟

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                #8
                Thanks Mary C sounds like you've worked out how to plan using your energy carefully. I need to give it some thought and as you rightly say work out what's best for me. Takes some getting use to but I'm learning. 😘
                Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. Generally weak. Mostly terrified.​​​​​​

                Comment


                  #9
                  denise it's a balancing act it seems. πŸ€—
                  Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. Generally weak. Mostly terrified.​​​​​​

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                    #10
                    I certainly get more out of breath when dog walking; however, when ive done it several days in a row, i get better. I must get back to the aerobic sessions i was doing before - youTube supplies walking workouts, Leslie Sansone, is good for beginners. There will also be sitting exercise programs on youtube and FREE. Take a look, keep as much of your movement as you can.
                    Mum died with MND in 1979 – I have a wonky gene, probably inherited from her. Reckon mine started sometime in 2018

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                      #11
                      EvelynMW thank you...yes I do think I need to try to increase fitness even in a limited way. I'll start with the Neuro physio exercises - which I have to admit I've been bad at doing. πŸ‘
                      Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. Generally weak. Mostly terrified.​​​​​​

                      Comment


                        #12
                        LindaB The OT just gave me hand exercises! When i was first diagnosed i was doing 30 to 45 minutes of 'aerobic' exercise a day, so i got told there was nothing else i needed to do - and i havent reported that i am doing far less!
                        Mum died with MND in 1979 – I have a wonky gene, probably inherited from her. Reckon mine started sometime in 2018

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                          #13
                          Don't get carried away with exercise as it can now do more harm than good. Fatigue one of the first symptoms of MND/ASL πŸ˜πŸ€—πŸ˜˜πŸ‘xx
                          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

                          Comment


                            #14
                            Originally posted by LindaB View Post
                            I feel I should be doing the Neuro rehab exercises.
                            Can you elaborate what these are or point me in the right direction? Thanks

                            Richard
                            Richard

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                              #15
                              richard my therapist from the Neuro rehab team formulated some simple exercises
                              1.ankle movements. Basically whilst lying down rotating each foot clockwise x10 then anti clockwise x10
                              2. Heel raises. Standing holding a chair or kitchen work top. X10
                              3. Calf stretches. Holding a chair take one foot back to stretch calf..alternate
                              4. Laying down...tilt pelvis lift bottom slowly x10
                              5. Laying down knees raised...reach left hand to right knee x5 repeat opposite side
                              6.Lay on left side right leg straight left leg bent....lift right leg up keeping it straight and back. X10

                              Also some balance exercises
                              Stand in one leg aiming for 10 seconds...then swop
                              Simple squat x10
                              Place feet together close eyes...balance.

                              These to be completed little and often.

                              In all honesty I need to do these and keep saying to myself I will tomorrow. 😏

                              These are formulated for me and where I'm at mainly right foot weakness...foot drop. General core weakness.
                              They may not be suited to others although it's nothing too strenuous.
                              Her advise was also if your doing something else such as going for a walk...no need for the above. Also if feeling fatigued don't complete.
                              Currently my motivation is zero but I'm working on thatπŸ‹β›ΉοΈπŸ€ΈπŸŽ―
                              Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. Generally weak. Mostly terrified.​​​​​​

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