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    Spasms

    Lot of spasms today and a shooting pain in my arm ๐Ÿฅบ x
    Janette x

    #2
    Snap! Mine are on my face, neck and stomach. Happy Days really are Here Again! ๐Ÿ˜๐Ÿ˜x
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong ๐Ÿค—๐Ÿ˜˜๐Ÿค—๐Ÿ˜xx

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      #3
      Mine seems to be my whole body like when you have a stretch, body goes all stiff for a few secs ๐Ÿคฆ๐Ÿผโ€โ™€๏ธ Oh the joys ๐Ÿ˜ฌ x
      Janette x

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        #4
        Hi Nettie, like you I get shooting pains like a quick electric shock.These pains were more regular a year ago in my arms.If I stretch out on the bed I often get cramp/spasms in my calves.When I bend to try and put my shoe on I get pain in my sides.If I sit still reading I mainly feel the fasciculations all over .My hands are weak..
        I try and do a few exercises daily as physio advised it might help prevent some stiffness.Nothing strenuous .I often wonder what else is going on as I used to walk a lot and eat healthier.Now I have to sit most of the day.Fleetingly think that I must be at risk of a stroke or heart attack leading such a sedentary life but itโ€™s not by choice.Best wishes.Mary

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          #5
          Mary we are truly brother and sister from parents who never met. ๐Ÿ˜๐Ÿ˜x
          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong ๐Ÿค—๐Ÿ˜˜๐Ÿค—๐Ÿ˜xx

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            #6
            Originally posted by Mary C View Post
            Hi Nettie, like you I get shooting pains like a quick electric shock.These pains were more regular a year ago in my arms.If I stretch out on the bed I often get cramp/spasms in my calves.When I bend to try and put my shoe on I get pain in my sides.If I sit still reading I mainly feel the fasciculations all over .My hands are weak..
            I try and do a few exercises daily as physio advised it might help prevent some stiffness.Nothing strenuous .I often wonder what else is going on as I used to walk a lot and eat healthier.Now I have to sit most of the day.Fleetingly think that I must be at risk of a stroke or heart attack leading such a sedentary life but itโ€™s not by choice.Best wishes.Mary
            Hi Mary, your symptoms sound very much like yours & Matthews, some days worse than others, like you I was very physical and now sit in a chair all day not good for anybody, the only exercise I get is walking to the window to close the blinds while I use the commode ๐Ÿฅด and back again ๐Ÿ˜‚ Love Janette x
            Janette x

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              #7
              Those full-body stretch spasms are something else, aren't they Janette ๐Ÿ˜ Impossible for anyone to bend the telegraph poles the legs have become! (Are they still called telegraph poles these days? Most cabling seems to be undergroung now, so I guess I mean street light poles ๐Ÿ˜ƒ)
              โ€‹Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
              Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

              โ€‹

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                #8
                Originally posted by Ellie View Post
                Those full-body stretch spasms are something else, aren't they Janette ๐Ÿ˜ Impossible for anyone to bend the telegraph poles the legs have become! (Are they still called telegraph poles these days? Most cabling seems to be undergroung now, so I guess I mean street light poles ๐Ÿ˜ƒ)
                Yes Ellie they hurt so much sometimes feel like my kneecaps are going to pop out ๐Ÿคฆ๐Ÿผโ€โ™€๏ธ๐Ÿ˜ฌ Iโ€™ve still got a telegraph pole outside my house lol ๐Ÿคฃ x
                Janette x

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                  #9
                  Originally posted by Nettie View Post
                  Lot of spasms today and a shooting pain in my arm ๐Ÿฅบ x
                  I get calf cramps if I point my toes (plantarflexion) and stretch, like first thing after waking up in the morning, I find that if I am quick and move my my feet/foot into (dorsiflexion) the opposite direction I avoid the impending pain.
                  Diagnosed 2nd Jan 2020
                  Both arms/shoulders affected, left worse than right.
                  Progressive Muscular Atrophy suspected

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                    #10
                    Yes I find exercises that stretching the muscles that contract into spasms for me most (eg calf, thigh, hand), have helped to reduce the occurrence
                    Diagnosed July 2020, ALS bulbar onset.

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                      #11
                      For those suffering from spasms, do you take Baclofen? My wife gets severe spasm in her legs, 5mg helps. She could take up to 60mg a day is managing on 20-25mg.
                      Husband and carer to my wonderful wife diagnosed with ALS Oct 20.

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                        #12
                        Originally posted by MartinB View Post
                        For those suffering from spasms, do you take Baclofen? My wife gets severe spasm in her legs, 5mg helps. She could take up to 60mg a day is managing on 20-25mg.
                        Yes Martin, Iโ€™m taking 20mg but they seem to getting worse ๐Ÿฅด
                        Janette x

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                          #13
                          Janette, at the height of my spasticity, I was taking 90mg Baclofen daily ๐Ÿ˜ฒ (max is 100mg/day) I then lowered my Baclofen and added in Tizanidine, another antispasmodic which works in a slightly different way, which worked better.

                          As my spasticity lessened, so did the need for high doses of meds, now I need 40mg Baclofen per day, with 2mg Tizanidine added in some nights. My legs are worse at night so I always get into a warm bed, even in summer - I have an electric blanket, on low, on a timer set to come on intermittently throughout the night (wonderful at relaxing my shoulders and back too) If I were to get into a cold bed, my legs would go rigid and take ages to relax, even after my meds.

                          Don't suffer, is what I'm saying - talk to your physio, nurse and GP about solutions.

                          Love Ellie.
                          โ€‹Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                          Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                          โ€‹

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                            #14
                            Hi Ellie, I did up my Baclofen which just made me really tired and didnโ€™t really help, the physio is coming today to look at some other problems Iโ€™m having so will mention it to her see what she thinks. Thanks Janette x
                            Janette x

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                              #15
                              I can identify with the tiredness, Janette, but my body got used to it and it definitely lessened over time. I take mine 3x daily, early morning before I get up so it doesn't matter if I've a cheeky wee snooze, at 3pm and I manage to stay pretty perky, then my last dose is at bedtime.

                              You could try an alternative medicine or a good quality CBD oil.

                              Hope you get sorted. x
                              โ€‹Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                              Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                              โ€‹

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