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  1. #1
    Forum Member Terry's Avatar
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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; 21st January 2020 at 20:22.
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  2. #2
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    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

  3. #3
    Forum Member Terry's Avatar
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    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 IMODIUMŪ 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

  4. #4
    Forum Member Ellie's Avatar
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    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 Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  5. #5
    Forum Member Ellie's Avatar
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    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 Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  6. #6
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    Hi Ellie

    I am really fed up with it but I am more concerned about being on so much imodium every few hours every day but my GP (who is brilliant and comes to the house regularly ) and my dietitian who has been involved from the beginning both say that I have to stay on the high dose for two weeks and then gradually reduce the imodium and see what happens.
    If I am honest I think that I will be back to the beginning but at least at the moment I have no diarrhoea and oramorph is letting me sleep and I am getting stronger.
    I did watch the programme with Steph McGoververn and I am taking probiotics so maybe that may help.
    I have tried 5 different peg feeds and I don't think that it is food related.
    All rather frustrating but I am sure that we will get there !
    I hope that you are keeping well xx

    Love Sarah xx

  7. #7
    Forum Member Ellie's Avatar
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    Thanks for the update Sarah.

    Good to hear you're finally sleeping better and getting stronger and also people are keeping an eye on you!

    I am good, thanks for asking. There are signs of spring in the garden and it's not dark at 4.30pm any more - woohoo

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  8. #8
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    Isn't it wonderful to see signs of spring and when the days start to drag out you know that you have nearly got winter behind you. Although I see that there may be snow on the moors tonight

    I hope that the early snowdrops survive

    Love Sarah x

  9. #9
    Forum Member Terry's Avatar
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    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

  10. #10
    Forum Member Ellie's Avatar
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    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 Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

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