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    Muscle spasms

    My muscle spasms have increased dramatically over the past few days. The doctors have prescribed Baclofen and the dose has been increased but it's still not helping much.

    Any suggestions, please?
    Dina

    Trying to keep positive, but not always managing.

    #2
    Hi Dina,

    Sorry to hear about your increased spasms. How much baclofen are taking, and how long have you been taking it?

    You could also have tizanidine as well as this also can help.

    If they are developing into incredibly painful cramps then maybe try quinine or gin and tonic.

    Massages, physio with full range of movement should help.

    Super easy for us, try to relax and sleep.

    Most drugs will take a while to help.

    Love Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

    Comment


      #3
      Hi Dina,

      A common misconception is that muscle spasms are the same as muscle spasticity - this isn't the case.

      Baclofen is effective at decreasing generalised muscle tone (spasticity) but often has little or no affect on a specific muscle spasm.

      Tizanidine can be good for muscle spasm, especially night time spasms (I take a mix of baclofen & tizanidine but I have very high tone in my legs)

      Magnesium supplements or massage with magnesium oil can help, as can heat (heat pack or electric blanket). Some people get relief from good quality (expensive) CBD oil.

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

      Comment


        #4
        Terry and Ellie, I’m not sure of the dose but I’m having three doses a day of Baclofen. I’ve been taking it since Thursday. I had quinine for a couple of days immediately before that.

        I don’t actually understand the difference between spasm and spasticity.

        I’m booked to have a massage on Thursday. In the meantime I shall chat to the doctors about Tizanidine.
        Dina

        Trying to keep positive, but not always managing.

        Comment


          #5
          Hi Dina;

          Baclofen that I take comes in 10mg. How many are you taking a day?

          Love Terry
          TB once said that "The forum is still the best source for friendship and information."

          It will only remain so if new people post and keep us updated on things that work or don't work and tips.

          Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

          Comment


            #6
            Originally posted by Terry View Post
            Hi Dina;

            Baclofen that I take comes in 10mg. How many are you taking a day?

            Love Terry
            Hi Terry,

            Mine is in liquid form, through my PEG.
            Dina

            Trying to keep positive, but not always managing.

            Comment


              #7
              Hi Dina,

              I’ll try to explain the difference between muscle spasticity and a muscle spasm !

              Both have the same origin, i.e. disrupted nerve signals, causing a change in muscle tone - Muscle tone is the level of tension or resistance to movement in a muscle.

              Spasticity happens when the muscle tone is so high that it can be difficult to, for example, bend a knee because the leg muscles are so stiff, it can be like trying to bend a pole. Usually an entire limb, or limbs, has high muscle tone, or the trunk. (My legs have very high tone but my arms have overall low tone )

              Baclofen reduces the overall spasticity / muscle tone, making the knee easier to bend. The drug, which is given 8-hourly for spasticity, obviously reduces muscle tone through the body, so it’s a balancing act to reduce tone enough to preserve function but not lower the tone so much as to make the limb useless.

              Some spasticity can be a good thing, especially in the legs, as it can keep you weightbearing for walking or doing standing transfers.

              Spasm is a sudden involuntary tightening or contraction of a muscle which doesn’t relax, so is more transient in nature than spasticity, but is also a consequence of increased muscle tone. Using baclofen for isolated spasm may not be an effective treatment, especially if general muscle tone isn’t high. And the dose, as I mentioned, can take a while to get right.

              Spasms can be spontaneous or have triggers - I wonder if yours are increased Dina because of positioning, posture, wheelchair etc in the hospital. Are you wearing compression socks?

              (I find that being too warm or too cold can trigger a spasm)

              You should ask what dose of baclofen you’re getting and how often.

              You so deserve something to go your way Dina

              Love Ellie.
              Last edited by Ellie; 30 September 2019, 16:52.
              ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
              Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

              Comment


                #8
                Thank you for the explanation, Ellie. I think I shall talk to the consultant tomorrow about one of his team contacting the MND nurses or consultant about the most appropriate medication. After all, although they have lots of MND patients through the ward, the expertise on the ward is in respiratory matters.

                I have to admit that it would be great if some things went more smoothly.
                Dina

                Trying to keep positive, but not always managing.

                Comment


                  #9
                  There's also Gabapentin which can be good for spasms, Dina - it has got bad press lately due to its abuse by *some* people, but there are always genuine reasons to use it so don't be put off by that.

                  Good luck x
                  ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                  Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                  Comment


                    #10
                    I've already had to climb over the psychological hurdle of using oramorph for breathlessness, so The Gabapentin one should be a piece of cake. All of these hurdles mean I'm getting plenty of 'exercise', don't they?
                    Dina

                    Trying to keep positive, but not always managing.

                    Comment


                      #11
                      Dina - just as fit as your wonderful name sake, the very talented Ms Asher Smith.

                      Hope your sense of humour stays with you for the next few weeks as, by the sound of it, you'll need every last bit of it (or up the Oramorph and start Gabapentin)

                      My heart goes out to you, Lovely Lady.

                      Big hairy hug,
                      Ellie X
                      ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                      Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                      Comment


                        #12
                        Thank you for the hug, Ellie. Much appreciated. I have to admit that I'm a bit fed up as I have five niggly problems (well, some of them are causing a lot of discomfort), apart from the muscle spasms, for which I'm having all sorts of medications, including changes of antibiotics.

                        Just at the moment, all I want to do is scream "It's not fair" and stamp my feet!
                        Dina

                        Trying to keep positive, but not always managing.

                        Comment


                          #13
                          Hi Dina;

                          Can't blame you for feeling like that. I wish that I could stamp my feet, I can sort of scream but no one hears it.

                          Hugs, Terry
                          TB once said that "The forum is still the best source for friendship and information."

                          It will only remain so if new people post and keep us updated on things that work or don't work and tips.

                          Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

                          Comment


                            #14
                            Dina, you are absolutely right re the 'niggly' issues.

                            An MND related issue which nearly tipped me was that one of my big toes is contracted due to the MND (bent downwards), which stresses the nail bed and caused me continuous problems. In the end I said Off with that troublesome nail, so off it came and problem solved - albeit

                            And, because life goes on and we get the usual health issues, I currently have an ovarian cyst, which is a non-MND inconvenience I could do without!!

                            It's the combination of several niggly issues which can make life even harder to cope with. I am lucky though, in that I am at home with my dog snoring beside me and my lovely carers looking after me ...

                            Hope you have a relatively good day today.

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

                            Comment


                              #15
                              Oh Dina, you are absolutely entitled to want to scream and stamp your feet. You have had such a rough time lately.

                              I really hope you get some of your " niggles " sorted soon and that things look up for you. I also hope you get home before too long.

                              Thinking of you and sending hugs,
                              Love Debbie x

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