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Thread: Social Isolation and Stiff Person Syndrome

  1. #1
    Distinguished Community Member Sunshine's Avatar
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    Default Social Isolation and Stiff Person Syndrome

    For many with Stiff Person Syndrome, positive emotion such as the feeling one gets socializing with a friend, causes painful stiffening . Itís a weird symptom and makes us look Nuts.

    I find myself avoiding or limiting socializing. The side effect is bad: isolation. Which can feed sadness.

    I been trying to avoid people less. I gotta work on being around friends more.

    I get frantic around non friend people in public as the stiffening and pain intensify in mildly stressful situations such as a curt salesperson. Then, itís a Herculean effort not to cry. Gotta work on that too.

    Hoping others, such as yourself, might chime in and share experiences or tips even.

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    I tense up from joy and happiness as well. Any emotion if strong enough will cause tension in CP LOL. The solution for me is not to avoid the emotion or avoid the socializing but apply my methods of releasing the tension as soon as I feel the tension come i.e deep breathes, slow movement, gentle exercise. Some tension is worth the grief to be with friends. Trust me. You can also suggest activities that lessen tension that you can do together. Stress will always cause tension even in the able bodied.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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    Yeah, I use the strategy too. Mainly it allows me to stay in the muscle stiffening situation. Because it gives my mind something to do, like a life raft. But the discomfort persists.

    It’s interesting the intersection of your CP and Stiff Person Syndrome symptoms. Both I assume are GABA related.

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    Quote Originally Posted by BBS1951 View Post
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    Yeah, I use the strategy too. Mainly it allows me to stay in the muscle stiffening situation. Because it gives my mind something to do, like a life raft. But the discomfort persists.

    It’s interesting the intersection of your CP and Stiff Person Syndrome symptoms. Both I assume are GABA related.
    Yes very interesting and I think you are right. If you want to be more social you should learn an app like Skype so you can video call and see your friends that way. I wish I could help with the pain aspect of Stiff Person but Cerebral Palsy is generally not painful until we get a bit older. I have no pain except for in cold weather when my tension get more intense because cold makes muscles contract(what I imagine Stiff Person feel like) or if my tension is causing me to stand or move in a way that causes my joints or bones to be out of their natural alignment. I have to think about my body alignment so that I don't do damage to myself when I'm elderly. I mean alignment in just the sense of the position my body is in. My joints etc are NOT dislocating or anything like that! The movie "Enter The Faun" www.enterthefaun.com talks about alignment in Cerebral Palsy. I do have to wonder if Stiff Person is putting stress on your joints causing pain.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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    My pain is mainly from knee down, especially ankles, bottom feet and shins. Hurts badly without MMJ

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    Quote Originally Posted by BBS1951 View Post
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    My pain is mainly from knee down, especially ankles, bottom feet and shins. Hurts badly without MMJ
    I'm sorry. You may want to take some kind of joint supplements for the knees and ankles. For shins etc you may want a heating pad or something like that.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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    Thanks😍........

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    Been working very hard on the social isolation. Putting self in pain inducing situations like meeting up for lunch so as to prevent excess isolation, having noticed that on days of at least one outing such as grocery store, meet up with friend, no matter how brief, while more painful in the moment, less lonely in the long run.

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