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    So tired

    I posted at the beginning of November saying that I just felt exhausted and a few days after that I felt very hot even in a cold room. I never had a temperature but was totally wiped out.

    I thought that it was a virus. I never had many breathing problems but I did have a few headaches at night around the same time but this could have been some of the medication for my back troubles.

    Ever since then I have been tired during the day time often falling asleep.

    I thought that once out of hospital that my energy would increase but it hasn't.

    The obvious answer is a problem with my breathing but I I just wondered if it could be anything else.

    Love Terry
    Last edited by Terry; 21 January 2020, 21:22.
    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.

    #2
    Hi Terry

    I am so sorry to see that you have been in hospital and I read that you lost a lot of weight, maybe that could be making you feel tired?

    I have been in hospital too for a chronic bout of diarrhoea that has lasted 7 weeks and despite a lot of tests nothing was diagnosed and I got the impression that you mention that you have MND and the gastric consultant loses interest in you. I have been sent home with mega doses of lomotil (imodium) every three hours and no forward plan

    I am exhausted too and do find it takes longer to recover with MND onboard

    I hope that you are feeling better soon

    Sarah x

    Comment


      #3
      Hi Sarah,

      I have had a better day today, actually went out and stayed awake for eight hours.

      Have lower back pain now and a bit of coughing.

      Great being in hospital over all of Christmas. There was a sickness and diarrhoea bug going around which I got but I have a good resistance to those sorts of things and was only sick once and no real problems the other end.

      I can not imagine seven weeks of diarrhoea, I hope that you keep hydrated and it soon gets sorted.

      My experience of this is nothing but you could maybe try a higher fiber diet but do ask your doctor first.
      You could also try IMODIUM® IBS Relief helps take control of your medically diagnosed IBS diarrhoea.

      I do hope you can get sorted, Mnd doesn't make anything easier and affects my movements down there.

      Love 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.

      Comment


        #4
        Hey TC, great to hear you had a good day yesterday - hoping you go from strength to strength from now on and get back to where (-ish) you were before the virus hit.

        Do you think your breathing is OK? Was it mentioned or assessed when you were a guest of the NHS?

        Wishing you more good days out with Grandad - I sure you both missed your excursions when you were in prison hospital.

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

        Comment


          #5
          Oh Sarah, you must be sooo fed up with diarrhoea at this stage

          I'm sorry those tests all drew a blank, that is frustrating. Any idea if your gut biome was tested?

          You might find this programme interesting - it was on last night and, reading your post this morning, I thought it may be of relevance to you or it may not!!
          You can just watch Steph's item on her gut biome issue. https://www.bbc.co.uk/programmes/m000dlwt

          Taking Imodium long term isn't ideal, although nor is unexplained diarrhoea, so I hope you can get to the crux of the problem eventually. Btw, is your Dietitan involved?

          Take care.

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

          Comment


            #6
            Hi Chimp,,

            My breathing seems to be ok but could not work out Any other reason for being so tired. Nothing was done in hospital they just kept me alive.

            Hair cut and got rid of father Christmas beard, followed by the truelly lovely conveen nurse.

            Now drinking coffee at the gym. I did a bit of movement but my muscles don't have work well. I have so much back pain that restricts my ambitious as well well.
            Still to be awake for more than eight hours a few days ago seemed impossible, so little steps.

            Love 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.

            Comment


              #7
              Would you think of wearing an overnight Sats monitor ?

              I doubt you'd go in for a sleep study, I know I'd need to be physically dragged into a hospital to do one at this stage xx
              ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
              Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

              Comment


                #8
                I think that I will try to get to the breathing clinic and have a over night sats monitor before hand.

                Don't fancy hospital especially this time of year

                Love 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.

                Comment


                  #9
                  I hope that your breathing stats turn out good Terry, Lynne
                  ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
                  I'm staying positive and taking each day as it comes.

                  Comment


                    #10
                    Awww Terry, I was only in hospital for 1 week and I’ve been home 3 days and I’m sleeping a lot more than usual and feel easily exhausted with the smallest of activities, I think I’ve lost some of my confidence but I thinking I’m getting stronger every day, Terry the fact your still improving sounds amazing, no place like home, my breathing fingers crossed is unaffected currently but please get yourself checked out, nice to see you back on the forum

                    Comment


                      #11
                      Originally posted by Terry View Post
                      I think that I will try to get to the breathing clinic and have a over night sats monitor before hand.
                      That way you will know what you're dealing with at least and, if necessary, you can start NIV to give you some extra power in your battery pack

                      Even though I know you've other things on your plate, try to organise the monitor asap.

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

                      Comment


                        #12
                        Originally posted by Hayls View Post
                        I’m sleeping a lot more than usual and feel easily exhausted with the smallest of activities,
                        Hi Hayls,

                        It sounds as if you maybe should have an overnight pulse oximetry test too.

                        If you don't know what it is, it's a fingertip monitor which measures your oxygen sats (SpO2) during the night and a wristband.

                        The monitor records your data, which is then sent back to the MND or Respiratory Clinic, who download and review your data. If your Sats (oxygen levels) drop during the night, you'd likely benefif from using NIV, also known as BiPAP or Nippy, *if* you want to use one.

                        NIV benefits include better quality sleep; more energy; better appetite and increased mood, to name just a few.

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

                        Comment


                          #13
                          Hello Ellie, Southampton hospital are already on the case, done my oximetry meter 2 nights ago and sent in the post to return and I have an appointment 5th February, fingers crossed

                          Comment


                            #14
                            On the ball Hayls !!
                            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                            Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                            Comment


                              #15
                              How is the back pain Terry, easing somewhat or as bad as ever?

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

                              Comment

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