Hey 👋🏼 does anyone have instances where they can do a certain task(like driving) but a small simple movement like bending or reaching provoke symptoms or cause pain?

Syringomyelia and syringobulbia

Feeling of choking

Generalized pain

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  • Ghost125


    Yes, if I bend down to much it seriously aggravates my symptoms. Driving also seems easy but after a while it's awful. But as time goes its progressing.

    • Jigglebean


      thank you for sharing! I feel like I'm having a hard time coming to terms with(as well as explaining) some of my difficulties and, I feel like I invalidate them when I can surprisingly do things that other people may not be able to do. So on the outside it looks odd to others that I'm able to do one thing and not the other as if I'm faking it.

  • Ghost125


    I have the hardest time explaining what I go through also! It doesn't help that I get 50+ symptoms whenever they want to be. Sometimes I come to terms with everything and sometimes I can't take it. I also invalidate myself and I think it's because everyone else makes me feel that way. My own family treats me as if I'm faking it.

  • Syrinxy



  • Jigglebean


    EXACTLY! Sometimes I feel like there's a dang chronic pain parasites in me or something. Picking which body part it wants to effect each week. So it looks strange to those who are inconsiderate, they're wondering "wasn't it your leg that was hurting, now it's your hand?" We gotta remember we are valid. If your mouth can't tell you, your body will 😮‍💨

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