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    Energy levels

    I seem to have deteriorated quite a lot since Christmas and am struggling with it all. I now need NIV at night ( nightly battles with blasted mask). Legs went ages ago and arms and hands wilting. But it’s my energy levels that are really getting me down. Breathing during the day goes up and down but doing anything like putting on a cardigan leaves me puffing and panting. I can’t help feeling it’s ‘the beginning of the end’. That sounds well dramatic but I’m able to do less and less each week. I used to have plateaus but this seems to be a steady downwards trend. Sorry to moan. I know we all have our own issues but needed to tell the only people who understand. Xxx

    #2
    Sarahw unfortunately I seem to be experiencing something similar, particularly with my breathing. It’s very scary. On the other hand I didn’t think I’d make it this far last year, so who knows? Commiserations xx
    Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

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      #3
      Sarahw same for me....any exertion however small seems to sap my energy. I'm walking indoors with a stick and furniture holding but leaves me breathless. I tell myself well just keep trying....others immobile so....make the most of it.

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

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        #4
        I have problems with breathing out and my energy is zero
        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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          #5
          It’s the fatigue and energy level issues that I suffer from too. I didn’t realise that MND would make me feel so ill. Naive I guess!
          Diagnosed October 2020 - See my blog at https://www.myneurodiary.com

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            #6
            Originally posted by Sarahw View Post
            I seem to have deteriorated quite a lot since Christmas and am struggling with it all. I now need NIV at night ( nightly battles with blasted mask). Legs went ages ago and arms and hands wilting. But it’s my energy levels that are really getting me down. Breathing during the day goes up and down but doing anything like putting on a cardigan leaves me puffing and panting. I can’t help feeling it’s ‘the beginning of the end’. That sounds well dramatic but I’m able to do less and less each week. I used to have plateaus but this seems to be a steady downwards trend. Sorry to moan. I know we all have our own issues but needed to tell the only people who understand. Xxx
            No need to apologise for moaning this is the one place where absolutely everyone knows what you are going through and have nothing but sympathy. For me I get very tired in the evenings not to bad during the day but no doubt that will come.

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              #7
              I get tired thinking about doing something
              It's all funny

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                #8
                Sorry you're struggling at the mo Sarahw I found that I'd 'suddenly' lose function but really it was 'just' that the last viable muscle in an area, which had taking on the the heavy lifting as its neighbouring muscles failed over time, itself finally failed, leaving little or no function... Doesn't make it any easier, mind you 😟

                Originally posted by Sarahw View Post
                Breathing during the day goes up and down but doing anything like putting on a cardigan leaves me puffing and panting.
                What about using NIV for a short time during the day and see if it makes any difference? Even 30-45mins after dressing or eating, anytime you feel breathless or drained can give you a boost.

                If your mask doesn't suit you, there are other types - it should not be a nightly battle, that would put anyone off.

                Originally posted by Sarahw View Post
                I can’t help feeling it’s ‘the beginning of the end’.
                I was going to be very/too direct and say that our ends began with the death of that first motor neuron 😬 but, once we start experiencing breathlessness, the end suddenly seems far too close for comfort. What I can say is, similar to my first paragraph above, it's amazing how the abdominal muscles can help out their neighbour, the diaphragm 😏 and that people can live on part-time or full-time NIV for quite some time (if that is their wish) 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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                  #9
                  I have much less strength at the end of the day and when I get up in the morning
                  Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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                    #10
                    Sarahw Being at the limit of my energy levels, I am hoping carers will be one way of compensating for this horrid characteristic of MND, and preserve some energy for me so I am not too tired. Do you have help? As it is, I just take things slowly with lots of resting. But as Ellie says, it’s exhausting when surrounding muscles are trying so hard to compensate for weak ones, and not very effectively. X
                    Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

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                      #11
                      Originally posted by matthew55 View Post
                      I have much less strength at the end of the day and when I get up in the morning
                      me too
                      It's all funny

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                        #12
                        Sarahw One other thought: I wonder if you're getting enough calories - have you seen a Dietitian lately? 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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                          #13
                          I can sympathise with you Sarahw. I’m not too bad during the day with a nap around lunchtime but the evening I’m very wobbly and tired. My breathing walking is ok but laughing or making a noise is another matter. At Christmas tho i was much worse and didnt think i get through Christmas. But Gaberpentin made the difference. Have you discussed how you feel with your consultant. Maybe medication needs changing. This is a b*****er of a disease. Hope you can get some help.
                          Bulbar ALS diagnosed September 2021, no speech, PEG fed, using ipad with Predictable to communicate, taking each day as it comes

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                            #14
                            Sarahw - I totally relate to what you are saying. I feel like I have declined more quickly since Christmas, always exhausted and get breathless from doing simple things. It was because of this I got admitted to the local hospice 4 weeks ago.

                            I'm not yet on NIV - apparently my recent breathing assessment was OK (overnight oximetry only down to 95%, FVC 80%/94%, CO2 and blood gasses within normal limits). I have rested lots and been trying to replace the weight lost, but my appetite is non existent.

                            Was discharged today and still finding the exhaustion completely limiting. I tend to spend most of my time sat either in a chair or in my electric wheelchair as walking with a stick I get exhausted within a few steps and very unsteady.

                            I was so much fitter... a year ago I walked 100 miles in March ☹️
                            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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