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ALS: Weakness in arms

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  • JAY TEE
    replied
    Gillete sorry you got pain. I was formally diagnosed with ALS MND in few days time 5yrs ago and was 70 on Saturday. My MND all down my left side. Before diagnosis I had pain in my left hip and just assumed to long in the front row. Luckily can use arm a bit to grip sit standing hoist when being lifted in out of bed into wheelchair which sit in all day. Best wishes John

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  • Gillette
    replied
    Hi Kayleigh, hi Ellie,

    Thank you for your replies. I thought I would ask if anyone else gets anything like it.

    The pain seems to be along the muscles, rather than around or near the joints. I have the physio coming to see me in 10 days so I'll talk to her about it. And I'll be at the MND clinic a few days later so can mention it there, if need be.

    Hi Martin,

    Yes, my legs have gone completely and now my arms are galloping along as they're in a hurry to reach the same state!

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  • Ellie
    replied
    Hi Dina,

    Sorry you've pain.

    The process of motor neurons dying and associated nerve damage in ALS/MND isn’t painful and I can only think this is where the ‘no pain’ comes from, but most, if not all, of us will experience pain as the disease progresses, notably in our limbs and neck.

    This may be due to cramp, spasm, change in muscle tone making joints less supported, poor mobility, change in posture etc. and different causes will have different remedies - it may be massage, heat, exercise, medication, support braces, positional or a combination of these.

    Do you have a physiotherapist who can assess you? Often GPs just write a script for pain meds, when other meds or solutions might solve the root cause of the pain.

    When my arms were going, I had pain in muscles around joints because of low muscle tone not holding the joints in an aligned position. Physiotherapy and hydrotherapy gave me much relief.

    Good luck.

    Love Ellie.

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  • Kayleigh
    replied
    Hi Dina,

    I have read on the MNDA website that sometimes MND patients get pain from stiff joints, cramps, and pain that is not directly related to MND.

    Love
    Kayleigh
    Last edited by Kayleigh; 13 May 2019, 06:41.

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  • martin
    replied
    I haven't experienced pain but I have loss of control in my arms and legs.

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  • Gillette
    started a topic ALS: Weakness in arms

    ALS: Weakness in arms

    Hi everyone,

    My ALS started in my legs and has started to affect other parts of my body. My arms have become considerably weaker and I am unable to reach out more than a few inches. When I try to lift my arms or reach out I am getting pain in the arms.

    I'm wondering if anyone else has experienced pain in a similar situation?

    When I was given the diagnosis, I was told that MND is not a painful condition (except in a couple of situations), so I thought I would see if this pain is unusual.
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