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Thread: Aches and pains

  1. #11
    Forum Member Kayleigh's Avatar
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    Hi Debbie,
    Many thanks for your very kind message. I am feeling much better now and am looking forward to Christmas day.

    I hope you and your family have a wonderful Christmas and a very happy New Year.

    Love Kayleigh xx
    We are a fabulous forum family - the precious bond we all share is powerful and strong!

  2. #12
    Forum Member Lynne K's Avatar
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    Thanks for the discussion on leg pain Ellie and Kayleigh. Some advice for me to think about.

    I'm at the stage of stiff restless legs when sitting watching TV or reading in the evening. I get the same feelings in bed. Anyway, in the evening I often get up to do some stretches while leaning on our kitchen units. 4 times each leg stretched for 30 seconds tends to bring some relief.

    In bed is another story. I gingerly stretch my legs while trying to avoid cramps. No easy task. It's interesting about not sleeping with straight legs. Unfortunately I cannot lie on my left hip - far too painful. Turning on my side is super difficult. I get knotted up in my pj's, painful. So left them off for a couple of weeks. I got some silk ones for Christmas. These are proving to be easier to move in and less likely to twist tightly around me but not impossible. I digress.

    Back to sleeping on sides and my dodgy left hip. If I lie on my right hip it starts off ok, just a bit uncomfortable in the left hip. But I'm usually awoken by serious pain in that left hip. So struggle back to my (painful) back.

    My back has been struggling with the new mattress since we moved. Every night I'm in serious pain most of the night. I tend to get up a few times to give myself a break from pain. I know my potential back solution (take the cheap mattress back to Ikea and order a better one). I'm yet to convince my hubby of this, but hopefully soon.

    I'm concerned for the future, in relation to possible bed sores, about not being able to lie on my sides. There is no solution to this. Lynne
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

  3. #13
    Forum Member Kayleigh's Avatar
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    Hi Lynne,

    I hope you and your family had a lovely Christmas.

    It sounds like having to a sleep on a standard thin mattress is doing your back no good at all! It must be terrible for you not being able to get a good night's sleep. It sounds like you have a medical requirement for a new mattress and so perhaps it is something that can be provided for you rather than you having to pay for it.

    I remember on a recent thread that beds and mattresses were discussed and that some people on this forum have been supplied with them. It might be worth you talking to your OT or nurse to find out what can be provided for you.

    I have realised that sometimes it is left to us to ask for things because, unfortunately, is not always the case that what we are entitled to is automatically offered to us. I don't know if a suitable mattress is supplied free of charge to everyone with MND who needs it. It might be a bit of a postcode lottery (as it is with the provision of riser/recliner chairs), but possibly worth enquiring about before you spend more money on replacing your ikea mattress.

    I have posted the link to that thread below:-

    http://forum.mndassociation.org/show...air-mattress//

    Best wishes
    Kayleigh x
    Last edited by Kayleigh; 27th December 2018 at 17:48.
    We are a fabulous forum family - the precious bond we all share is powerful and strong!

  4. #14
    Forum Member Lynne K's Avatar
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    Hi Kayleigh. Thanks for your suggestion but my back problem is mostly because of my severely degenerated discs. MND is exasperating it because I cannot walk regularly like I previously did and it was always the first thing I tried when my back was more sore. The divan mattress on the landlords bed that we slept on for about 15 years was good for my back. It's been the cheapest Ikea foam mattress, and then the cheapest sprung one that have led to my intense pain every night. We just got back from IKEA and organised our existing mattress to be picked up when they deliver our new and I hope suitable mattress. I bought a memory foam mattress topper too. I'll let you know after I've slept on the new set up. It probably won't be here for about 4 or 5 days. We have to wait for a call. Lynne
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

  5. #15
    Forum Member Kayleigh's Avatar
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    Hi Lynne,
    Great news that you are getting a new mattress and topper. I expect you can't wait for them to be delivered. Hopefully you will be getting a much needed good night's sleep very soon
    Kayleigh x
    We are a fabulous forum family - the precious bond we all share is powerful and strong!

  6. #16
    Forum Member Lynne K's Avatar
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    Yea I certainly am waiting and looking forward to a much better night's sleep. Hubby backtracked on his (in my opinion) meanness. He couldn't have been nicer. It always takes him a while to come around. Not good for me this time. But we got there in the end. Lynne
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

  7. #17
    Forum Member Kayleigh's Avatar
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    Hi Lynne,

    Sometimes they don't like to admit that they are wrong - maybe he is not finding the cheaper mattress very comfortable either! Sometimes we go for the cheaper option, only to regret it later.

    Main thing is that you will not have to put up with the thin mattress for much longer - and you have ended up with a topper as well as mattress, which will hopefully add considerably to the comfort!

    Kayleigh x
    Last edited by Kayleigh; 28th December 2018 at 01:29.
    We are a fabulous forum family - the precious bond we all share is powerful and strong!

  8. #18
    Forum Member Lynne K's Avatar
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    You are spot on Kayleigh x
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

  9. #19
    Forum Member Ellie's Avatar
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    Hi Lynne,

    I am also plagued by RLS - Restless Leg Syndrome - every evening from 8pm-ish and particularly in bed.

    There are meds which stop it, including Ropinirole, which some people say has a positive effect on MND progression.

    I take Pramipexole every night and would be awake all night without it - I can't get up and walk the restlessness out of my legs or even move my legs in bed, so the meds are vital for me.

    If RLS is an issue for you and disturbs your sleep, maybe ask your GP about meds.

    Really hope the new mattress is good.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.

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