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  • matthew55
    replied
    Oh I agree. We are all different as we always say. 😁🤗😘😍xx

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  • Ellie
    replied
    Passive movement isn't exactly 'exercise' (I wish it were...)

    The more passive ROM is done for me, the less pain I have 👍👍😘

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  • matthew55
    replied
    It's a very fine line. I have to take care not to over work my left hand during the day or I can't use it in the evening. For th the dirty minded I used my right hand!😉😂😁😍xx

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  • shelly21
    replied
    I understand that Matthew. But I'm still managing to walk. Range of movement helps with joint stiffness.

    I'm sort of mid way.

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  • matthew55
    replied
    Be wary of see exercise especially in later stages.

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  • shelly21
    replied
    Ellie I will let you know. I have had exactly the same injections many times in my head as I suffer with occipital neuralgia. It did give me relief so thank you i might look into it.

    I found a series of passive physio excercises on you tube. A husband & wife team. This really helps my partner as he can be nervous with the hands on elements etc.

    My physio is not hands on in fact in 5 months since diagnosis I have not had one session of physio.

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  • Ellie
    replied
    Originally posted by shelly21 View Post
    I am starting the bowen technique this week.
    Interesting Shelly, let us know how it goes please. I hope it isn't too painful for you 🤞🤞

    I had (have) bad muscle wasting around my scapulae and my upper humerus-humerus head area and had quite bad paid. I even tried morphine but what took away the pain with the most success was nerve blocking injections. Lidocaine was injected into local nerves in my scapula area and blocked pain signals for a few months, before I had repeat injections. I also had steroid injections near the humerus head. Something for you to bear in mind if necessary.

    I am mostly naturally pain free now as ligaments, muscles and joints have found a new equilibrium.

    Good luck with the Bowen technique, hope it works for you. xx

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  • shelly21
    replied
    I am starting the bowen technique this week. Its to help with my hip & shoulder pain due to waisting muscles.

    I also massage using coconut oil with is good for muscles.

    I also think passive physio helps me. Basically someone moving the arm, leg etc so that I get a range of movement going.

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  • matthew55
    replied
    I get pain in my fingers of my right hand which is the most advanced wasted.

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  • Terry
    replied
    Hi Andy;

    Be careful of your liver as Riluzole also puts a load on it. I would be tempted to try over the counter Ibuprofen regularly for a couple of weeks and see if that does anything. Might be good to contact your doctor to see if that's safe.

    I always found standing still or walking slowly for awhile gave me back ache and had to move fast or crouch down to keep it moving.

    Love Terry

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  • nunhead_man
    replied
    Hi Terry,

    And thanks Barry

    Originally posted by Terry View Post
    I guess you are taking ibuprofen on a regularly to reduce inflammation and help relax the muscles.
    Things I did not know number 57!

    In fact I'm not taking painkillers as you describe although weirdly as I suffered from gout quite a long time ago I have some old anti-inflammatories which I will now experiment with - if it means anything to you it's called Indomethacin and is a rather old-fashioned tablet with the risk of liver damage but I have always tolerated it well.

    It is strange because for a long time I've worked at my desk standing up to improve posture and maintain mobility and the pain in my back is certainly intermittent and helped by sitting down

    Best,

    Andy

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  • Barry52
    replied
    Hi Andy,

    Like you I also experience back pain and it is sometimes lower or between the shoulder blades. I’ve had mri scans to rule out other causes but I am told it’s down to posture. The problem has worsened since I became reliant on a walker but I can’t manage without it so I guess it’s catch 22.

    Best wishes,
    Barry

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  • Terry
    replied
    Hi Andy;

    I guess you are taking ibuprofen on a regularly to reduce inflammation and help relax the muscles.

    Don't give up on it and see what else your doctor has to offer.

    Love Terry

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  • Kayleigh
    replied
    Hi Andy,

    I get pains in my legs, which is where I am currently most affected by MND. Your explanation of how MND indirectly causes pain makes sense to me, because as far as I am aware I wouldn't get leg pains if I didn't have MND.

    Best wishes,
    Kayleigh

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  • nunhead_man
    replied
    Hi Terry

    Originally posted by Terry View Post
    Many of us do get lower back pain due to posture weakening muscles Etc.
    Ah - okay - well it is not really but you know what I mean :-)

    I'm tasked by my neurology team to drink 2 L of water a day so my kidneys are generally swimming.

    And I'm sorry I was not clear but the pain in my kidneys was not stopped by the antibiotics I had whilst I was taking the course

    So having had this exchange I guess is now that it is motor neurone disease what dun it.

    Thanks

    Andy

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