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Thread: Problems lying in bed.

  1. #1
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    Problems lying in bed.

    Hi

    I'm having some trouble during the night while lying in bed and if anyone has any suggestions to help me that would be great. Basically at night time I lie in a fetal position on my right hand side to sleep. As the mnd has progressed the muscle in my right leg has wasted a little leaving me with a somewhat sore leg just below my hip. To relieve the pain and discomfort of this I tend to roll over on to my back for a few minutes before rolling back onto my right hand side. But this rolling over and back then tends to leave my left arm trapped under my body which is very uncomfortable. Because the mnd started in my arms there is very little movement or strength left in my arms and I can't free the arm from under my body. The discomfort in my arm is definitely worse than the pain in my leg and the only way I can free my arm is to get my parents out of bed to help me reposition myself. This happens two or three times a night lately resulting in lost sleep for them. (I'm fine as I can lie in during the morning or go for a nap the next day.)

    What I've tried so far is putting a pressure plaster on my leg and until very recently this has helped relive the discomfort in my leg. I have a hospital bed with an air mattress which also helps. I have tried sleeping on my other side or on my back but I can't get comfortable enough to sleep. What frustrating about it is that the pain in my leg isn't too bad. The nurse looked at the leg and shoulder and it's not too bad just a little red so she recommended the plasters. It's having my arm trapped painfully under me when I roll over and back that's causing the real problem. Does anyone have any suggestions for me to try or am I doomed to waking people to help me every few hours.Hoping someone can help.

    Mick.

  2. #2
    Forum Member Lynne K's Avatar
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    Hi Mik. I'm sorry to hear about your sleeping problems. I'm not experienced in that yet but I've been thinking how to manage to get a fairly dead arm to stay roughly in a normal position. The only thing that comes to mind is to strap it to your body somehow or other. Or, would that be uncomfortable and lead to more problems? I hope that one or other of us comes up with a workable suggestion. 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. #3
    Forum Member Kayleigh's Avatar
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    Hi Mick,

    It might be possible for your OT to provide you with an alternating air mattress (if you don't have one already) like this one:-

    http://https://www.careco.co.uk/item-s-bd03021/softform-premier-active-2-mattress.htm?utm_source=shopping&utm_medium=cpc&ut m_campaign=PLACampaigns&gclid=EAIaIQobChMIr-bn5a7c4AIVb5PtCh2Bag2DEAQYAyABEgJqpfD_BwE

    Best wishes,
    Kayleigh x
    We are a fabulous forum family - the precious bond we all share is powerful and strong!

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    Micks shoulders are painful , hes upped his amitrytilene from 10mg to 30mg and a friend has given me a massive v shaped pillow n the sides are as long as the bed and very thick so hes snuggling into that and slept better last night. have u tried a pillow?

  5. #5
    Forum Member Kayleigh's Avatar
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    Hi Shrew,

    Thanks for sharing the tip about the V shaped pillow. I think I will invest in one. You've got a good friend there, and it sounds like she is a bit of an expert concerning comfortable pillows!

    I was thinking about getting this pillow, but it might be too large?:-

    http://https://www.completecareshop.co.uk/dressing-and-comfort-aids/support-pillows/long-body-pillow-view-large?gclid=EAIaIQobChMIu-6JhMXc4AIVT5PtCh3kIw-ZEAQYESABEgIrS_D_BwE

    It's good to hear that Mick is able to sleep more comfortably.

    Love,
    Kayleigh x
    Last edited by Kayleigh; 27th February 2019 at 20:18.
    We are a fabulous forum family - the precious bond we all share is powerful and strong!

  6. #6
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    Thanks Kayleigh, he has no daytime pain, we assume its because his shoulders are bony. before my friend brought the pillow into work he had started putting a pillow inbetween his legs which seemed to work. I collected a prescription for gababentin but hes not used them, just upped his amitryptilene. just hope he continues to sleep well. the pillow is huge! as long as the bed and each side is ptobably 6 or 7 inch wide

  7. #7
    Forum Member Kayleigh's Avatar
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    Hi Shrew,

    The pillow sounds great - probably a bit like sleeping in a very comfy nest!

    I hope you are able to get enough sleep and rest as well.

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

  8. #8
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    Hi Mick,

    Like you my mnd has started in my arms my left one has very little movement now and gets stuck under me. I sleep in what my husband calls 'my dingy' one of those all body length pillows. It supports my shoulders and my legs. I suffer from cramping in my leg that wakes me and my husband because it's so painful. Broken sleep is a pain but we need to find solutions along the way with this ever changing illness.

    Best wishes
    Ginger x

  9. #9
    Forum Member Ellie's Avatar
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    A dingy !!! That's hilarious Ginger Glad it works for you.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  10. #10
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    Hi All,
    It is amazing that these simple problems are such an issue considering there are 5000 of us all being tortured before we die a hideous death. I can’t get help from the " healthcare professionals”. My neuro OT is so useless I bet she couldn”t find my **** in the dark with a torch. She had been saying she needs to assess my needs at some point for 1.5 years now and all she has ever done is measure my hips about 100 times. Guess what - they are still 19” across. My wife and I check on NRS website for stuff, and buy it myself. There are loads of pads an pillows to alleviate limb pain and discomfort.
    You need to maintain two sleeping positions as a minimum as long as you can to ensure perfusion and prevent pressure sores - even with an active mattress.
    Magnesium Citrate stops night cramps because one of the issues is a calcium/magnesium balance at a metabolic/cellular level. I alternate Tramadol/Ibuprofen/Paracetamol for pain relief. When I was at the Hospice I was stuck on my back all night and could not reach the bed control or the alarm button - lying awake all night in pain is a truly ghastly experience.
    I bought a vibrating massager that increases the blood flow and give total relief of musculoskeletal pain. 50 - totally brilliant.
    I use EMS machines to excercise my muscles so they do not waste away so quickly. If they worked for Bruce Lee in the 70’s they are good enough for me!
    Neuro Muscular Therapy addressing trigger points and refered pain is brilliant but good luck finding a physio that knows anything about it. Luckily I did.

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