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AS & Movement/Exercise

Hi, everyone. I'm very interested to hear what kind of movement and exercise you do — if you can still do exercise, of course.

While there are things I can't do, like running (ah, the spinal torture!!!)...I still dance, swim, and walk.

Dancing (I use YouTube dance videos) only works when I'm on a yoga mat so I'm not pounding my spine. Swimming is excellent for me and I always feel GREAT but I don't typically have access to a pool.

Walking is useful too, but honestly, if I aim to walk 10,000 steps per day, it KILLS ME but about 7k. If I'm honest, it hurts most of the time...but it starts to really kill me (my hips and lower back) at 7k.

So - does walking hurt/affect you?

What kind of shoes do you wear for back support?

  1. "Dancing (I use YouTube dance videos) only works when I'm on a yoga mat so I'm not pounding my spine"

    Its the impact of such movement that really affects me. I agree with your statement on dancing even though I don't really dance (in public). I have found that my triggers are repeated impact like hiking downhill or repetative bending over in the garden.
    As for shoes- anything lightweight. I have some beautiful boots to sell as they are just too heavy. I have read of some people with AS rock climbing and others pretty much bed ridden... It seems we all have our individual burdens.
    For me, walking is great- just don't ask me to do any fourth class hiking or any long hikes in general.

    1. Hi everyone! New to the Community, just recently joined. Haven’t officially introduced myself yet but thought I would reply here as an informal icebreaker!

      For me…my movement/exercise of choice would be my local Y for that pool action. And when I make it, I absolute love it...and myself. I can tell a huge difference in my mobility, flexibility, and overall mood. I’m a registered nurse by universal calling and personally, it tends to set me up for more frequent flare ups. Usually pre/ant/post flare ups or pre/post shifts, I am just so drained that any thought of movement exacerbates my fatigue even further. And then que the anxiety and guilt that inevitably sets in when I am immobile for a long period of time. Then of course the panic attacks start kicking in…which does increase my heart rate…too bad that’s not considered an appropriate form of heart inducing exercise.

      Walking long distances or for a long period of time is painful and unbearable. I used to pride myself on my walking abilities. Fast-paced, always on a mission, somewhere to be or something to do…Now I can barely walk without debilitating pain and recently I have been getting winded and SOB? My husband and I are Indy born and raised and huge fans of the Indianapolis 500. Sadly, I have had to miss out on it the past couple of years due to the excessive walking demands. Those are just faint memories of the person I used to be and need to learn to accept that I am 36years old and now have limitations that a 36yo shouldn’t have. (That was unbelievably hard to type for permanent view, nonetheless for the world… 🥺)

      Never have been a runner-it has always been so uncomfortable, even as young as in grade school playground fun or in high school sports. My back would spasm and cramp, my knees turn to fire and beg for the torture to stop, ankles would just spontaneously swell out of protest. I always just believed it was what/how everyone else felt and chalked it up to being too competitive or going too hard (I'm 5ft, so length wise my legs have to work harder than average or taller height peeps.)
      I do love to dance when the song hits just right, so I will have to look into those YouTube vids for sure! Who knows, might feel cute and make an AS tic-tok dance account to rep the stiff/non-flex life!

      1. Hey There Mel How are you? Just logging in and wanted to welcome you to the community so glad to have you here! Thank you for sharing with us. I love dancing too since I was little it’s been a huge part of my life. Yessss girl get on tik tok, I love Making my tik tok dance videos sometimes a lil too sexy for some haha but I feel like there’s this stigma that chronically ill ppl are not suppose to be “sexy” so I show my sexy side every once in a while still! I always say dance your AS off lol!!! Sending love 💙 Nadine (Community Member)

    2. I used to run/jog two hours a day before AS, I love running. It’s not so,e thing I can really do now often I probably shouldn’t at all but I basically lightly jog on the spot for 20-30 mins some days. Because I’m autistic movement is how I regulate feelings and emotions and sometimes I need that mentally even if my body isn’t fine with it. I do battle with this so often.

      Walking I love when I’m able to (some days I can do 6-7,00 steps others I can barely stand to shower) but even with proper walking shoes if I’m walking somewhere with more gravelly floor or bumpy uneven pathway I end up with my hips and knees in agony after.

      I’m still trying to figure out what I can and can’t do tbh and still upset about the limits as puts on my life, ideally I’d love to be able to do around 6-7,000 steps a day or have that leeway if I wanted to go out and do things vs one day that active followed by days unwell. Even building gradually didn’t change the effects sadly

      1. Thanks so much for sharing your experience.
        I wish you all the best as you try to find that perfect balance.
        Warmly, Doreen (Team Member)

      2. Hi Doreen same to you thank you 💙 Nadine (Community Member)

    3. Allow me to "invite" you to visit a comment I have made just now on this very subject, elsewhere on this site.

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