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    Neck Pain

    Morning all. Anyone else get neck pain?
    I have had it constantly for months now. I believe it is because the ongoing loss of muscle tone has made my posture go to pot.
    As my shoulders slump over I must be using my neck at a strange angle to keep my head up.
    Just wondered if anyone else had this, and if anything could be done about it.
    It's the only thing that actually hurts
    Hi, I'm Eddie.
    Started with wobbly left ankle in Nov 2020. Diagnosed 22 Oct 2021, confirmed by 2nd opinion 4 days later.
    Still walking and talking, and wondering what the future will bring.

    #2
    Yes, subtle at first and I dismissed it as just posture related, (but similar sensation to how my arms progressed) then a few more times intermittently the last month.
    G.P. has made an appointment about it due to an 'out of hours' assessment, as it was coincidental with dry choking cough and fasciculations on shoulder and side of neck. Out of hours Doctor had some concerns after feeling around neck muscles when moving.

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      #3
      WheelsOfSteel Welcome to the world of the drawbacks in having a heavy human head, Eddie 😏

      See your OT or Physiotherapist for an assessment for a neck support/collar, of which there are various types.

      Without my collar, my neck, shoulders and upper spine would be painful, not to mention I'd be navel gazing. xx
      ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
      Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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        #4
        Cheers Ellie
        Damn my giant superbrain...
        Hi, I'm Eddie.
        Started with wobbly left ankle in Nov 2020. Diagnosed 22 Oct 2021, confirmed by 2nd opinion 4 days later.
        Still walking and talking, and wondering what the future will bring.

        Comment


          #5
          WheelsOfSteel my neck has been getting worse for a while and once I convinced the physio that it wasn’t related to my surgery that I had three years ago (I have three vertebrae fused in my neck) I was referred to orthotics and now have a neck brace and exercises to do to help with the discomfort. I would definitely ask

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            #6
            Similar issue here. Average head weighs 8 or 9 pounds. My neck muscles gradually weakened to the extent that I now have to hold my head up with my hands or use a collar to support it. Another new normal.

            Hospice physio provided several collars to try none of which are very comfortable. Also given exercises to ease restriction of movement.

            Local hospital’s Orthotics department ordered different collar and back brace but taking months to arrive due to supply problems so bought back brace on internet to improve posture which hasn’t been helped by years working behind a desk. That helps to an extent.

            Can’t help noticing how many older men walk with head bowed and poor posture.
            Diagnosed June 2019. Bulbar palsy. Lost voice. Using PEG fitted April 2021 alongside eating normally albeit slowly and messily at times.

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              #7
              Karen62 What collar are you using? I am using Headmasters.
              Diagnosed June 2019. Bulbar palsy. Lost voice. Using PEG fitted April 2021 alongside eating normally albeit slowly and messily at times.

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                #8
                Hi John D my neck brace is an Aspen Vista - the orthotics person said that it was the only one he had found that helped mnd patients. It is comfortable to wear and has helped my posture When I walk.

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                  #9
                  Originally posted by Karen62 View Post
                  Aspen Vista - the orthotics person said that it was the only one he had found that helped mnd patients.
                  Just goes to show how different we all are - I lasted one week with the Aspen Vista, wasn't suitable for me at all 😏

                  Glad you found a collar which suits you Karen62 👍👍
                  ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                  Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                  Comment


                    #10
                    🤔 my husband is able to keep his head up most of the time but I have noticed his head does drop forward slightly. He complains of pain in his right shoulder but not his neck. Wondering if it’s because he’s compensating for strength in his neck. Anyone else have shoulder pain.

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                      #11
                      Ps hope you all find the right collar and neck pain is eased.

                      Comment


                        #12
                        Originally posted by Piglet View Post
                        I have noticed his head does drop forward slightly ... He complains of pain in his right shoulder but not his neck.
                        If I don't wear my collar, I get pain inthe top of my left shoulder from muscle strain.

                        I previously also got muscle pain around my lower shoulder blade from my weak muscles being unable to support the joint - much improved with nerve block injections - so it's always best to be assessed by an OT or Physiotherapist.

                        Hope your husband gets relief soon. xx
                        Last edited by Ellie; 14 June 2022, 21:25.
                        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                        Comment


                          #13
                          Ellie yes thanks Ellie. I think I do need to contact our O T. We don’t have a physio but I’m sure. Our O T can refer.xx

                          Comment


                            #14
                            My Dad started having shoulder and back pain last November, in December he started using a foam collar but didn't like it as it went all around his neck and throat. Then he used one like a headmasters collar but that soon wasn't strong enough.

                            He's been using the aspen vista for several months now but it's got very uncomfortable as his neck muscles weaken. He now has a lean to the right as well as his head dropping forward. I've just asked the physio to do another assessment as he's spending more time in bed due to being increasingly uncomfortable.

                            I would be interested in any neck braces that anyone is using that they find relatively comfortable and very supportive. Has anyone tried the Heads Up Collar which has been designed by Sheffield Uni with people who have MND? It looks quite restrictive and like it won't provide enough support for what Dad needs but it has got generally good reviews so interested in anyone's experience of using it.
                            Thanks
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                            Comment


                              #15
                              Hi Eddie. Yes I do and it’s definitely related to muscle loss. I started wearing a neck brace (I’ve tried different types) none are particularly comfortable but do the job. However I find the best solution is to make sure my back is well supported. Since using a wheelchair when I’m out,rather than walking any distance, I find I don’t need the neck brace. I’ve also been prescribed some pain relief gel although not needed it yet.

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