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Stiff Person Syndrome and Exercise

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    Stiff Person Syndrome and Exercise

    As an athletic person, Stiff Person Syndrome hits me hard.

    Not only are sports like swimming, surfing, and walking fun, they keep wellness under control. Even with MS Inwas able to enjoy physical activity.

    Enter Stiff Person Syndrome:

    Walking more than a couple of minutes is out of the question. Standing more than a minute is painful and dangerous.

    Water is so far the only way for me to exercise and elevate the heart rate. And Ali now only swim 16 minutes a few times a week, rather than an hour 7 days a week. Surfing 3x week for 3 hours per, is now only

    And the whole time, the Stiff Person Syndrome creates muscle stiffening in legs, making me worry if a full blown spasm will rear up.


    Lifting 6lb weights is okay from seated position . But it doesn’t elevate heart rate.

    I am curious what others with Stiff Person manage for activity.

    #2
    This is still a big problem. Searching for solutions and wonder what others have found.

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      #3
      My reading and talking with a man with Stiff Person Syndrome indicates this is a pervasive problem. Exercise triggers stiffening and spasms. Even modest exercise.

      The lack of exercise and walking, then, trigger other medical problems; this domino effect is difficult and demoralizing.

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        #4
        I try to exercise when I have more Tizanidine on board re timing of exercise and dose. Also, try to exercise before 1 pm. Any later guarantees spasms.

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          #5
          6lb weights are good for lean muscle. Lean muscle will be less spastic. Swimming is also great. In CP exercise lessens spastic activity after a bit of initial tensing. Cerebral Palsy is different in that sense.
          Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
          My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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            #6
            Thanks funnylegs.

            I reached my target of ten pound weights for arms.

            Since I temporarily, hopefully, can’t swim or surf, am out of luck re aerobic exercise for now.


            exercise is a trigger for SPS spasms, so it’s tricky. Finding ways to stretch is good. But aerobic activity is dicey. It’s important to do the exercise early day, and time it when the muscle relaxants are on board.

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              #7
              Dr. Newsome recommends moving in a warm pool as cold is a trigger for symptoms.

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                #8
                But I did lift free weights today. And I stood much longer, walked more competently around the house today and yesterday due to IVIG this week. It lasts the better part of the week and then the problems slowly creep back up.

                I am noticing the muscle in my left for arm from the side is still tight like when you lift away. The muscle has not relaxed yet I hate that feeling is the first time I noticed in my arms. It is probably stiff person syndrome acting up.

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                  #9
                  I think so, such a critical problem. Though I didn't find any solution. :(

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                    #10
                    Welcome Galloway, thank you for posting. :-)

                    ANN
                    There comes a time when silence is betrayal.- MLK

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                      #11
                      Welcome Galloway— thanks for joining in the discussion! For me, exercise is my big challenge as it is a spasm trigger. Is it the same for you?

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                        #12
                        Mayo told me to exercise 5 minutes. Then rest the muscles a while, then try another 5 minutes. Don’t exercise at 100%.try to find the sweet spot of what’s tolerable.

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                          #13
                          Welcome, Galloway!
                          SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) since December 2020.

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