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Thread: Aches and pains

  1. #1
    Forum Member nunhead_man's Avatar
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    Aches and pains

    I wonder if those further into the disease could give me some advice?

    As I said in another post my recent visit to my neurologist suggests the disease is progressing in me as he noticed fasiculations in all my limbs although functional damage only in my left hand and arm plus now shoulder - a slow development over the last three years.

    However I am beginning to notice some aches and pains which seem a little unusual although I wonder if it is because I'm exercising less than I used to when I do e.g. a 2 mile walk as I did this morning if it is my body complaining simply through lack of use.

    My alternative theory, especially as I have a backache - and I never get backache - is that this is the beginnings of MND hitting my other muscles?

    Your thoughts team?

    Best wishes

    Andy
    Warmly


    Andy

    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.
    MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

  2. #2
    Forum Member Ellie's Avatar
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    Or... it's your body complaining due to over use???

    Did you see a Physiotherapist at that recent Clinic visit Andy? You may have subtle gait changes which would impact back muscles, for example.


    I'd advise you first check in with a Physio - one knowledgeable in neuromuscular conditions, preferably the Physio in your MND Clinic - and get advice on how and what to exercise.

    Are you still in the "Possible MND" category? Has the Neuro/Do you have any interest in doing more EMGs?

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

  3. #3
    Forum Member Terry's Avatar
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    Hi Andy;

    It could well be your body complaining, and you have to except some limitations.

    If you overdo one set of muscles, sometimes others, like your back try to compensate and maybe strain them.

    Don't stop doing things just try to be a bit more careful and don't get to tired.

    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.

  4. #4
    Forum Member nunhead_man's Avatar
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    Quote Originally Posted by Ellie View Post
    Did you see a Physiotherapist at that recent Clinic visit Andy? You may have subtle gait changes which would impact back muscles, for example.
    I did see a physio my last visit but that was concentrated on the fact that my left hand has become very stiff and her suggesting ways of keeping it moving.

    Your comment about backache is thoughtful and I will try and go back and have this looked at

    Quote Originally Posted by Ellie View Post
    Are you still in the "Possible MND" category? Has the Neuro/Do you have any interest in doing more EMGs?
    My neurologist has not talked about possible for 12 months or so - I have a clear diagnosis.

    I did ask before the last appointment for an electrical investigation but instead had some testing using reflexes which is my neurologist's usual modus operandi.

    I think, given this conversation I will press again for an EMG.
    Warmly


    Andy

    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.
    MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

  5. #5
    Forum Member nunhead_man's Avatar
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    Good morning Terry

    Quote Originally Posted by Terry View Post
    If you overdo one set of muscles, sometimes others, like your back try to compensate and maybe strain them.
    Thank you - I have a long history of overdoing things and paying for it with aches and pains - that's why I was asking really - and I am doing less and being careful at least by my standards - walking 2 miles each way yesterday was just a standard thing for me under usual circumstances
    Warmly


    Andy

    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.
    MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

  6. #6
    Forum Member AndyB's Avatar
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    Hi Andy
    For the last two or three months I’ve been waking up with terrible backache. I assume it’s due to my abdominal muscles starting to weaken. Once I get up and about the aching subsides. I guess I’m also putting different strains on my muscles too as I now hobble around on crutches or with a stick.

    Andy

  7. #7
    Forum Member Barry52's Avatar
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    Hi Andy,

    I have physio for dexterity and I attach a few photos of the exercises that help using play putty.

    Best wishes,
    Barry 7C01B5FD-3C6D-4649-AF37-006537583CF8.jpgB477F395-98F9-4E1A-B46F-E7BEF54942A6.jpgC52C5173-369F-4FC5-A9C1-A5C8BFF62098.jpgCDDE271F-4AC5-4812-960A-3E72D146DFEE.jpg
    Iím going to do this even if it kills me!

  8. #8
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    Hello Andy
    I have suffered from backache recently. The physio checked me out and found nothing too amiss but suggested some exercises to improve my posture. However, when I saw my Consultant a few weeks ago and mentioned it to him, he recommended an increase in my VitD which was a little low. He explained that low VitD affects the body's 'girdle' which can cause aches in the hips and back. I have started taking supplements and do feel better.

    Ann

  9. #9
    Yes, aches and cramps are a pain - literally - aren't they.

    I recently spent a very helpful 90 minutes with a physiotherapist specialising in neurodegenerative diseases. She was adamant that it is important to get as much exerciseas as possible within the constraints MND imposes, i.e. exercise the bits that still work; don't worry about wearing them out prematurely.

    This advice was endorsed a week ago by Prof Talbot at a routine visit to his MND clinic at the John Radcliffe.

    Doug

  10. #10
    Forum Member nunhead_man's Avatar
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    Good evening,

    Thank you Doug concerning taking as much exercise possible which is precisely what I do - while being careful something in my increasingly developing unbalanced musculature does not go twang.

    And I'm known as Mr Paranoid around here not the least my backache seems to have declined given continuing exercise of those muscles but on the other hand I have weird twinges in both my feet which Mr Paranoia here thinks presages drop foot which might either be the result of my two or 3 miles walking today each way or the vestiges of gout which I manage with diet

    Best to all,

    Andy
    Last edited by nunhead_man; 9th November 2018 at 09:19.
    Warmly


    Andy

    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.
    MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

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