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    Mattress Topper?

    Not sure if you can advise... I'm struggling with pain in hips and shoulders at night and it's getting worse. I can't lie on my back but on my sides the hardness of the bed just seems to dig in. I'm not heavy, so not my weight.

    Does anyone else have this problem? Would a thick mattress topper help? I think it is exacerbated by how hard it is to turn in bed too.
    Diagnosis confirmed Jan 2022 (age 46) after several years ignored/ misdiagnosed.

    Symptoms began in left foot 2017. Now mainly left side, speech and some loss on right side too.

    Unable to walk unaided (powerchair user), poor speech, left hand behaves like a drunk toddler but generally positive and determined.

    #2
    I've given up sleeping on my side. πŸ‘†πŸ€—πŸ˜œπŸ˜xx
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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      #3
      matthew55 - which way up do you sleep then? I can't breathe well on my back.
      Diagnosis confirmed Jan 2022 (age 46) after several years ignored/ misdiagnosed.

      Symptoms began in left foot 2017. Now mainly left side, speech and some loss on right side too.

      Unable to walk unaided (powerchair user), poor speech, left hand behaves like a drunk toddler but generally positive and determined.

      Comment


        #4
        I can sympathise lots. I suffer hip pain and shoulder. I did buy a putmans pressure relief topper and it has helped a bit. I'm trying a toto turning system next week. Its only taken since December when they said I would have it. X
        Diagnosed May 2021 bulbar onset als.

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          #5
          I sleep on my back but raised up
          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

          Comment


            #6
            Originally posted by TinyLady View Post
            I'm not heavy, so not my weight.
            You'd be surprised - it's not so much your own weight, but the dead weight of a limb or body which isn't regularly shifting its weight plus, if you don't have much 'padding' on you, the issue is exacerbated.

            I had tried a memory foam mattress topper but found it no better than my regular mattress comfort-wise, then I was given a Repose inflatable mattress topper, which didn't help either - you might find the opposite though. Sheepskin is meant to be good but I imagine it's expensive?

            I then got an air mattress (I weighed 47kg) and it was a revelation - although I know that some people have poor experiences with air mattresses they were given.

            If you have a community nurse, ask to be assessed for comfort in bed - I know your OT is useless... πŸ˜₯😘
            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
            Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

            ​

            Comment


              #7
              Originally posted by shelly21 View Post
              I'm trying a toto turning system next week.
              Here's hoping shelly21 🀞🀞

              If you like it, will that bed be left with you or will it be taken away and one ordered for you? xx
              ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
              Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

              ​

              Comment


                #8
                TinyLady as well as a pressure relieving mattress (from Social Services Stores) via an OT or community nurse also ask for a Wendylett fitted base sheet. I have these and am now able to change position in bed. They are silky material that reduces friction and enables you to move more easily. I also have a bed lever fitted to the side of the bed that I pull on, although arm weakness would make this less helpful.
                Started limping 2017, diagnosed August 2021. Wheelchair user and reduced shoulder function. Trying to be positive 😺.

                Comment


                  #9
                  Thanks for all the suggestions... I did ask about an air mattress. But apparently they only do single bed size and I also need a hospital bed. Being in my mid forties, I still enjoy sharing a king size bed with my husband... so reluctant to go for a hospital bed until I really have to. Seems like a depressing step away from normality.

                  Thanks Ellie for sharing your experience. I might have to re-think. I don't have a community nurse (I don't think) so not sure who I can talk to. I'll make do for now xx
                  Diagnosis confirmed Jan 2022 (age 46) after several years ignored/ misdiagnosed.

                  Symptoms began in left foot 2017. Now mainly left side, speech and some loss on right side too.

                  Unable to walk unaided (powerchair user), poor speech, left hand behaves like a drunk toddler but generally positive and determined.

                  Comment


                    #10
                    Originally posted by TinyLady View Post
                    I still enjoy sharing a king size bed with my husband... so reluctant to go for a hospital bed until I really have to.
                    Tiny, I continued sleeping on my half of our king sized bed, on my air mattress, for quite some time before moving to a hospital bed.

                    I was a tad higher than my husband but we still could use the one big duvet. πŸ‘πŸ‘πŸ˜˜
                    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                    ​

                    Comment


                      #11
                      Originally posted by TinyLady View Post
                      Thanks for all the suggestions... I did ask about an air mattress. But apparently they only do single bed size and I also need a hospital bed. Being in my mid forties, I still enjoy sharing a king size bed with my husband... so reluctant to go for a hospital bed until I really have to. Seems like a depressing step away from normality.

                      Thanks Ellie for sharing your experience. I might have to re-think. I don't have a community nurse (I don't think) so not sure who I can talk to. I'll make do for now xx
                      TinyLady

                      The community nurses can be referred by the GP (I used to be one) we have visits every few months and I contact them mainly regarding Thomas' Pressure areas.

                      Unfortunately we had to get a hospital bed for him mainly for the rising up and it rises him to standing.

                      Due to this I had a single bed too. Unfortunately due to the configeration of the bedroom and need for equipment we can't have the beds together.

                      Which is so sad.
                      Donna

                      Carer for husband Thomas, diagnosed with MND of Fail Arm Type in July 2020.

                      Comment


                        #12
                        DeeH thank you for that insight. Yes, must be such a horrible thing to have to do. I am really trying to hold off on anything like that as long as possible. But might end up being the only way to get comfortable.

                        I have some morphine so might try that tonight 🀣
                        Diagnosis confirmed Jan 2022 (age 46) after several years ignored/ misdiagnosed.

                        Symptoms began in left foot 2017. Now mainly left side, speech and some loss on right side too.

                        Unable to walk unaided (powerchair user), poor speech, left hand behaves like a drunk toddler but generally positive and determined.

                        Comment


                          #13
                          TinyDancer

                          That would be nice

                          Having slept on the floor, when Thomas slept in the chair

                          A single bed is luxury in an actual bedroom, together.

                          Hope you get a sleep
                          Donna

                          Carer for husband Thomas, diagnosed with MND of Fail Arm Type in July 2020.

                          Comment


                            #14
                            Hubby and I have given up our king size bed. We now have two single profile beds but in the lounge sharing our king size duvet x

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                              #15
                              I'm so stubborn... I know I am lucky I can still sleep in my bed... but I wish I could do it without pain. I really am reluctant to give up on normal things until I absolutely have to πŸ˜†
                              Diagnosis confirmed Jan 2022 (age 46) after several years ignored/ misdiagnosed.

                              Symptoms began in left foot 2017. Now mainly left side, speech and some loss on right side too.

                              Unable to walk unaided (powerchair user), poor speech, left hand behaves like a drunk toddler but generally positive and determined.

                              Comment

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