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    Lethargy & Energy

    By way of background the first symptoms of my MND were over 5 1/2 years ago. Stride not being as long as my brain was telling it, dropped right foot and tripping. Fortunately, if there is such a thing with MND, is that mineis slow progressive and still only showing in my legs, which are now useless.

    I used to be very active but now I frequently wake up feeling lethargic, not tired, if you know what I mean. Some days are good and some not so good. Today's a 'not very good day'. I feel lethargic but have no energy. On an energy scale of 1 to 10 where 10 is the highest I am today at 3 at the best.

    Does anyone have any suggestions as to how I can boost my energy levels?

    Many thanks in anticipation.

    Richard
    Richard

    #2
    Oh Richard I'd love to know the answer to that one. Stephens main, come to think of it only, complaint is tiredness. He's tired from the moment he gets up until he goes to bed. We've cut his riluzol in half so it's just the evening tablet. I can't say it's helped with the tiredness but I have noticed a change in his behaviour ie continual questions. I won't go into that now. But if anyone can offer suggestions on fighting tiredness please share.

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      #3
      I was the same until NIV. Now I feel like a new man. I still wobble quite a bit though 😊
      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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        #4
        Stephens been using niv for nearly a year. He sleeps well it's once he gets up. He can walk but the problem is too tired to move. I thought having a peg and the right feed would equal energy but that doesn't seem to be the case. He's supposed to exercise gently to get benefit from the food but he's like death warmed up.

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          #5
          The last two nights I’ve done a full 9 hours on Niv and I feel more tired than I normally am 😴 and got swollen feet 🤷‍♀️
          Janette x

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            #6
            Hi Nettie I haven’t got NIV yet but imminent.I have swollen feet too as day goes on which has occurred recently.District nurse coming to have a look and in mean time have to elevate them
            Have a good day
            Mary

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              #7
              Don't confuse lethargy with lack of energy 😁x
              Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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                #8
                richard Can you find a correlation between your lethargy and increased activity, stress, etc over the preceding days?

                MNDs are heavy consumers of energy and, as lethargy is a lack of energy and enthusiasm, we often need reminding that our energy reserves are finite on a daily basis. Use energy wisely - doing the garden, going for a walk, getting dressed, making lunch (depending on one’s limits) can really drain the tank, so if energy is an issue, don’t waste it on thankless/fruitless tasks, save it for enjoyable/productive tasks.

                The first time my Dietitian came to assess me and was calculating a calorie intake, she added on calories specifically as I had a neurologic condition (I think it was 10%) You’ll also often read quotes like, “now is not the time to lose weight”, “full-fat or high-fat foods are good for you”, and whilst that may not be as important for you, Richard, for those with classic ALS, it has a lot of truth to it.

                I hope tomorrow is much better than a 3 for you…

                Love Ellie.
                ​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
                  Hi Richard,

                  It sounds like my MND has progressed in a similar way to you. I have had symptoms for six years and it is mainly my legs which are effected.... like yours they are useless. I often feel exhausted and when I have a broken night I feel considerably weaker.

                  I'm not always successful but I try hard not to nap in the day because I find it prevents me from sleeping at night. If I have a busy day I try to arrange a restful day before or afterwards. I used to think a duvet day was giving in but now I enjoy a day reading and watching TV.( and doing Phils quizzes) and I think of it as a battery recharge. However, the fatigue is frustrating as I had endless energy before MND.

                  For me. I think the covid restrictions have made me lack motivation to be up and out and about. Hopefully well have some sunshine soon to help us.
                  Take Care,
                  Love Debbie x

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                    #10
                    My MND probably started in late 2018. One finger on my left hand would curl up when using pressure, and i had to uncurl it with the other hand. I then started to notice that my left hand, (I was left handed) was getting weaker. Diagnosed mid 2020 via a genetic marker. Until March this year, i worked as a part time carer, going in to peoples homes for half or up to 4 hours, at a time. I had to get up, 2 days a week at least, by 07:30. Sometimes, 06:30. Seemed to manage it ok, and usually home by 9 pm.
                    Had to resign as there were jobs, like cooking, buttons, catheter tubes, that i couldn't handle any more. Now i sleep up to 11 hours a night! And still have a finite store of energy each day. Bt if i keep going, i keep going! Then collapse and watch catch up! Would this have occured if i was still working? I do not know.
                    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
                      Hi Debbie

                      I think that lock down has affected us more than we realise. I have only just realised that I have become quite anxious about going out and about whereas before I had no problem. I am now going to make a real effort to go out because its not like me at all.
                      I think that you are right about the motivation.

                      I used to feel guilty about staying in bed for just feeling tired but now I quite enjoy it. If I need to sleep I sleep.

                      take care
                      Sarah x xx

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                        #12
                        I am very similar...footdrop, weak legs, poor balance, rapid decline in walking mobility over an initial 6-12 month period, but then nothing overly significant and that has been the case for 9 years. But yes...tiredness versus fatigue is a strange one. I continued to work for 5 years but it was very tiring (stressful client job). I'd say I get suddenly tired around 11pm, but am busy/occupied every day, albeit with very reduced mobility, so not really a fatigue or lethargy, more just a busy life in a more limited way. Lockdown has made my limited activities harder, and I'd say my legs feel weaker because of that. I do eat healthily, don't eat the classic MND diet, just try to eat as I would if didn't have mnd, but can understand the need to if you have wasting.

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                          #13
                          Hi Richard, I wish I could transport people into the inner regions of our brains where the battle is being fought against MND. The brain is under sustained attack and a lot of damage is being sustained. However, the brain is fighting back against the onslaught and is using all resources at its disposal.

                          The upshot is that we feel fatigued.

                          https://www.youtube.com/watch?v=vjFG-4Ge668
                          Copyright Graham

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                            #14
                            Richard, does your lethargy lift when’s you are in a sunny or bright environment? If so, it could be that the lockdown has resulted in not enough sunlight falling on your eyeballs. I suggest this because I always feel heavy headed if I don’t have enough sunlight. I bought a light box a couple of years ago and sat in front of it every morning. This has reminded me. I haven’t seen my light box for ages. My husband must have talked it to our stomach place.

                            Otherwise, the other suggestions given to you are worth considering.

                            I hope that you find some that works for you. Love Lynne
                            ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

                            I'm staying positive and taking each day as it comes.

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                              #15
                              Janette and Mary, I too get swollen feet, water retention. Elevating my legs works to keep this mostly away. But doings some peddling works even better. I hope that you both find a solution. Love Lynne xx
                              Last edited by Lynne K; 15 May 2021, 11:49.
                              ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

                              I'm staying positive and taking each day as it comes.

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