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    #1

    MND pain free?

    Good afternoon all

    I know this will be controversial as the usual line here is that MND does not cause pain.

    However given my experience over the past few days I would beg to differ.

    The agony caused by one of an opposing set of muscles getting weaker and being beaten by the other set has caused me significant joint pain and for example causes my middle finger to go click, stuck in a closed position. When I click that finger to get it straight so I can use it again I get an agonising pain in my middle finger joint which no amount of massage seems to help.

    I also think although I'm not sure that changes to my circulation have caused a recurrence of gout, something I've not had for almost 15 years until the last couple of months. And for those of us that had it we know that the pain from gout is a bit like having a tooth drilled.

    Anyway, rant over – but I do think saying that MND is pain-free is a little short of the truth
    Warmly


    Andy

    ​Diagnosed 03/2015. One sided limb onset (arm) sporadic PMA/MND - now 90% left arm and 90% right arm, plus other bits including both shoulders and also some breathing issues – Campaign contact Winchester and Southampton branch, and trustee of the Association

    "Things turn out the best for people who make the best of the way things turn out"
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    #2
    Whoever said MND was painferee obviously didn't have it.
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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      #3
      I think that was referring to the actual disease process, ie, neuronal damage and death, not to the pain associated with the impact weak muscles have on the musculoskeletal system.

      ​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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        #4
        You say potato...... x
        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

        Comment

          #5
          Even from witnessing the disease at close capacity I can confirm the different pain that comes with it this far. Up till now we've had pain from the odd fall, excruciating cramping, toilet pains (constipation), what we think was shoulder freeze or something (agony in the second arm thats going) and general sleeping discomfort....never mind psychological pain of the whole thing. Thank goodness for medication, however the pain has to exist firstly unfortunately to realise you need medication.

          I agree Ellie, the actually disease not being painful, but given the associations are very much part of it, I would say in general it's definately a painful disease.
          • Likes 1

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            #6
            Oh, I'm not disagreeing about pain - believe me, I live it 24/7 - I was explaining the origin the "pain free disease" myth.

            Tess, I also had a frozen shoulder for which various painkillers didn't really do much, so I had a steroid injection which provided long-lasting relief - maybe he could look into that?

            I always say life with MND is hard enough without having to put up with pain and there are solutions available - sometimes getting those solutions seem to involve (metaphorically) jumping through hoops with medical professionals

            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

              #7
              And a ring of steel was thrown around care homes...

              It is all part of the challenge, enjoy!

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