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Thread: Stiffness in joints and muscles

  1. #1
    Forum Member nunhead_man's Avatar
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    Stiffness in joints and muscles

    Good morning,

    My acupuncturist was worried this week about stiffness that was developing in my left hand side (Shoulder especially) and I have been worried separately about the stiffness in my fingers that does not allow me to fold them into my palm.

    So I was wondering about this stiffness business and whether it was just because I was not using myself enough or whether it was a feature of the type of motor neurone disease that I have.

    A quick search got me to here;

    http://forum.mndassociation.org/show...ord-MND-Centre

    >>>>>>>>>>>>>>>>>>>>>>>>>>>>>
    "......Predominantly UMN ALS
    ........................
    Limb onset is typical. Slowness of movement, spasticity (stiffness) and some weakness of muscle strength will be noticed. Briskness of reflexes will become apparent. Walking gait will change as specific muscle groups weaken and often foot-drop is an early indicator of leg involvement. Over years muscle weakness will spread throughout much of the body, but what distinguishes this disease from pure PLS is that muscles will waste during the progression of the disease.
    ........Breathing will continue to operate for many years and maybe decades."
    >>>>>>>>>>>>>>>>>>>>>>>>>>>>>

    So firstly, this seems to be me, although my onset is arm, not leg.

    Secondly, I am wondering if I am doing myself any damage by trying to get those stiff joints moving all the time?

    Best to all

    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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    Hi Andy,

    As you know, ALS affects both the UMNs and LMNs - (UMN) upper motor neuron degeneration generally causes spasticity (tightness in muscles/high muscle tone) and (LMN) lower motor neuron degeneration generally causes atrophy (muscle wasting) and twitching.

    So, yes, spasticity is a normal part of ALS. It is more severe/bothersome in PLS & UMN Dominant ALS.

    Antispasmodic meds - primarily Baclofen - reduces muscle tone making muscles more pliable and functional BUT getting the dose at the sweet spot can take a few attempts - you need to preserve enough tone to preserve function, whilst lowering the tone enough to facilitate movement.

    Range of motion (ROM) exercising is important to keep joints moving and stop them swelling or seizing up. ROM of any area, particularly hands, fingers, feet and toes, can include massage with oil (always towards the heart)

    Swimming or hydrotherapy is particularly good for spasticity, but any low impact gentle exercise is good, providing you don't overdo it!

    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
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    Quote Originally Posted by Ellie View Post
    Hi Andy,

    As you know, ALS affects both the UMNs and LMNs - (UMN) upper motor neuron degeneration generally causes spasticity (tightness in muscles/high muscle tone) and (LMN) lower motor neuron degeneration generally causes atrophy (muscle wasting) and twitching.

    So, yes, spasticity is a normal part of ALS. It is more severe/bothersome in PLS & UMN Dominant ALS.

    Antispasmodic meds - primarily Baclofen - reduces muscle tone making muscles more pliable and functional BUT getting the dose at the sweet spot can take a few attempts - you need to preserve enough tone to preserve function, whilst lowering the tone enough to facilitate movement.

    Range of motion (ROM) exercising is important to keep joints moving and stop them swelling or seizing up. ROM of any area, particularly hands, fingers, feet and toes, can include massage with oil (always towards the heart)

    Swimming or hydrotherapy is particularly good for spasticity, but any low impact gentle exercise is good, providing you don't overdo it!

    Love Ellie.

    What is the average life span with UMN predominant ALS/MND?

    Thanks!

  4. #4
    Forum Member Ellie's Avatar
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    Hi there and welcome to the Forum.

    Unforately there is no "average" for the slower progressing UMN Dominant ALS, sorry to say...

    Are you long diagnosed and how has your progression been to date?

    Often past progression is a good indicator of what's to come, so it may take a few years to build up a picture of your disease.

    There are no hard & fast rules with MND, that's the problem...

    I hope your overall health is well and stay safe, i.e. try not to fall

    Love Ellie.
    ​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 nunhead_man's Avatar
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    Good morning Ellie

    Quote Originally Posted by Ellie View Post
    As you know, ALS affects both the UMNs and LMNs - (UMN) upper motor neuron degeneration generally causes spasticity (tightness in muscles/high muscle tone) and (LMN) lower motor neuron degeneration generally causes atrophy (muscle wasting) and twitching - etc
    Thank you for putting all that together for me -- I guess I knew part of that. But putting it all together in that way was very helpful.

    I think my neurologist made a mistake by suggesting my left hand should be kept in a splint overnight to avoid damage as that is meant the my left hand has atrophied rather more than it might have done.

    Concerning gentle exercise I think I overdid it a bit last night in the sense both my hands got very cold while we were doing Dr bike session as shown here

    https://southwarkcyclists.org.uk/eve...ckham-arch-13/

    But I do agree with you the gentle exercises is good it makes me feel better both physically and mentally - latter well-known, of course, as in e.g.

    https://www.theguardian.com/commenti...on-cycling-cbt

    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

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