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    Heavy chest

    Looking for advise. Especially those with bulbar onset & those on cpap.
    this week I'm nursing a chest infection. I'm now managing to start clearing my chest.

    However when I lay back on my propped up pillows, my chest feels very heavy. my arms are both loosing strength. Its like someone sitting on my chest.

    I know you guys are not doctors but wanted to see if this sensation is normal when chest muscles weaken x
    Last edited by shelly21; 3 August 2022, 18:34.
    Diagnosed May 2021 bulbar onset als.

    #2
    Originally posted by shelly21 View Post
    Especially those with bulbar onset & those on cpap.
    Its like someone sitting on my chest.
    I hope your NIV machine is in BiPAP mode, not CPAP 🤔

    My lung function is very poor and the only time I feel a weight on my chest is when my intercostal muscles are in spasm - it doesn't make much of a difference if onset is bulbar or limb, it's more about lung function and muscles involved in breathing - but for me, apart from those occasions, my chest feels normal, it just doesn't work (can't blow out, suck in air, hold my breath etc)

    Is this only since/with the chest infection? 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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      #3
      shelly21 oh Shelly that sounds awful for you. Are you taking antibiotics, I hope you are, and perhaps if you still feel this heavy sensation maybe the antibiotics need changing. Hope you feel better very soon.xx

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        #4
        Piglet yes started antibiotics yesterday. I think I kept putting it off when I really should've let my other half phone the g.p.

        I also didn't keep up my nebulizer. Not sleeping well and just not looking after myself.
        but I'm back on it and hoping its tight muscles from coughing.

        X
        Diagnosed May 2021 bulbar onset als.

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          #5
          Ellie sorry I just call breathing machine n.i.v but trying to be clever....fail lol.

          Yes since the chest infection. Its all happened at once. Speak very poor and swallow then poor cough. X
          Diagnosed May 2021 bulbar onset als.

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            #6
            Oh shelly21 that sounds so scary and horrible.

            Im not sure if it's relevant to you but after I had covid I had a tight, painful and heavy chest from coughing .I was struggling to catch my breath and it made me sick. I don't use NIV. I was convinced it was MND related so saw the respiratory consultant at clinic but after tests he felt it was because of rhe infection.

            Love and hugs to you xxx

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              #7
              Originally posted by shelly21 View Post
              Yes since the chest infection. Its all happened at once. Speak very poor and swallow then poor cough.
              I just hope once those antibiotics kick in and your chest clears that the speech, swallow and cough recover somewhat 🤞🤞

              It worried me that you said you use "CPAP" - is your NIV definitely set up with different a breathing in figure to your breathing out figure? (Shown onscreen as IPAP & EPAP) It's just that people with ALS shouldn't use CPAP, but bilevel NIV - sorry for getting all technical... 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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                #8
                Has anyone listened to your chest Shelly? Definitely the route I'd be going down. Take care xxxx

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                  #9
                  Also we have been going even a number that bypasses 111, it puts us through to the out of hours doctors receptionists. To save time and harassment I suppose

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                    #10
                    Music man's wife the physio came yesterday and heard it. She asked me to call g p so i did.

                    Ellie it does show ipap. Tbh Ellie I'm impressed that I can still eat and speak. I'm just over 3 years re my first symptoms (slurred speech) I know now that I need to prevent aspirations. I've been making protein shakes and fruit smoothies and I hope tonight i can keep on my niv. I was doing well then 10 days ago I was waking up and snatching the mask off. X
                    Diagnosed May 2021 bulbar onset als.

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                      #11
                      Deb and Ellie I've just looked up intercostal muscles and yes I have been coughing lots.

                      Thank you everyone. X
                      Diagnosed May 2021 bulbar onset als.

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                        #12
                        Sorry you're struggling shelly21​​​​​ it sounds like you've been doing well with still having speech and swallow 3 years after first symptoms.. I hope the antibiotics start working and things improve for you x

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                          #13
                          Are you feeling and better today xxx

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                            #14
                            shelly21sending prayers and love 💕 hoping this chest infection clears up asap!
                            It sounds like maybe the choking episode from earlier triggered the infection?
                            Thinking of you 😢

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                              #15
                              AngieCanuck I think so. At first it was horrid glue type and hard to shift then the infection.
                              Music man's wife I had a much better night's sleep last night and actually stayed on my n.i.v for 6 hrs without coughing. Result x
                              Diagnosed May 2021 bulbar onset als.

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