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Thread: Pain/Agony

  1. #1
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    Pain/Agony

    Hi,

    My Gran is being taken to hospital after her nursing home were told by her that she is, to quote, 'in agony' all down the right hand side of her body since last night- they've now phoned an ambulance for her to go to hospital because it's making her breathing quite bad.

    I was under the impression, from everything I've read, that MND doesn't cause pain. Can anyone shed some light on what this might be? I am panicking rather a lot.

    Thank you all.

  2. #2
    Forum Member MNDConnect's Avatar
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    Hi Broostine93

    I'm sorry to hear that your Gran is unwell. MND itself doesn't generally cause pain but the immobility that it causes can cause pain or can cause very painful cramps.

    People with MND can also experience other conditions, separate from their MND. Your Gran's pain may be completely unrelated to the MND. Getting the pain checked out by the hospital is a good idea as they'll be able to identify the cause and make her more comfortable.

    Best Wishes

    Rachel
    MND Connect Adviser

  3. #3
    Forum Member Ellie's Avatar
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    Sorry to hear this Chrissie, you must be beside yourself with worry

    I hope she is well looked after in hospital and given appropriate care.

    Sending you a big hug.

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

  4. #4
    Forum Member Terry's Avatar
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    Hi Christine;

    Sorry to hear of your Gran being in so much pain and I hope she's more comfortable now. Mnd is not normally painful apart from cramps but it does make us vonrable to side issues such as pulled muscles and many other things that cause pain. I could list some but it is so long, from teeth to ingrowing toe nails and wind problems.

    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.

  5. #5
    Forum Member Lynne K's Avatar
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    I just wrote a lengthy reply Chrissie and it disappeared I'll do it again later. I'm wrecked now. 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.

  6. #6
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    Hi Guys,

    Thank you so much for your replies- they make me feel like I actually have some support!

    I've just come home from the hospital- they've done a chest xray and some bloods. Still waiting for results, but doctor reckons she could hear crackling in the bottom of the right lung so we're thinking it might be pneumonia (not surprising, seeing as Gran is determined to eat things that she regularly aspirates with!)

    The only issue is that, because her speech is so impaired, the doctors are having trouble understanding a lot of what she's saying and, as you all know, MND is so rare that most don't realise the specific ways in which she needs to have her body placed on the hospital bed (especially with the drop foot issue that gets really uncomfortable if not positioned correctly). I got her a pen and paper to write things down, but I'm 50/50 on whether she'll actually use it!

    I felt I had to come back to work for a few hours before the doctor comes and determines what's wrong with her (work have been so good with everything up until now and I don't want to take the pee!)

    I've been and grabbed a bag from the nursing home as I'm sure she'll be spending at least one night in the hospital- it's all drama today!

    Thanks again, all!

  7. #7
    Thinking of you and your Grandmother Chrissie x

  8. #8
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    Quote Originally Posted by Music man's wife View Post
    Thinking of you and your Grandmother Chrissie x
    Thank you- means a lot to have my MND Family on-side x

  9. #9
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    Would it help if you wrote or typed a list of phrases your gran could point to? For example I’m cold. I need a drink. Please move my foot etc etc

  10. #10
    Forum Member Ellie's Avatar
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    Chrissie,

    If you have access to a printer (or maybe the Nurses' Station has):

    - Maybe take a photo or two of how Gran likes to be positioned in bed and stick them above her bed.
    - Print out any further instructions, e.g., if she needs her pillows in a certain way, or whatever.

    And, as Miranda suggested, a list of key phrases would be handy, if your Gran would use them of course!!

    There are communication sheets specifically for hospital stays available online (downloads) if she has to stay in for a few days.

    Look after yourself.

    Love Ellie.
    ​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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