LaisyDucky OP t1_j9r2zcq wrote on February 23, 2023 at 11:22 PM

Reply to comment by MzFrazzle in A mild case of scoliosis by LaisyDucky

That’s crazy! Were you disappointed to not qualify? Do you have a hard time with pain? -sorry for the questions. Edit: personal info

MzFrazzle t1_j9sg2e9 wrote on February 24, 2023 at 5:47 AM

I was really relieved. Nobody wants to be the kid with the tracheotomy and a back brace. I'd already done one huge surgery with 7 weeks in hospital, and I am NOT keen on doing another.

Not really in pain (but sometimes). I do have a high pain threshold though. My body is weird, so it self balanced. I have extra floating ribs and my hips and shoulders aren't level to counteract the curve. My one leg is ever so slightly longer to take up the raised hip.

You can barely tell unless I wear a fitted dress with stripes or if it has a zip up the back, then the lines aren't straight. Shoulder straps always fall off my left shoulder.

My neck gives me the most problems. I have spina bifida occulta there so its often stiff and sounds like rice krispies when I move. Sometimes causes headaches, the doc said "DON'T LET ANYONE TOUCH YOUR NECK". I do have a bit of a neck hump.

I try and do a lot of core work, my pain levels are definitely worse when I don't exercise for long periods. My parents put me in ballet as soon as I could walk at the advice of a doctor. I think that helped a lot in terms of using the correct muscles to stand, walk etc. Often people use their back muscles instead of their core, especially if your core is weak, that causes a lot of back pain.

I used a biokineticist for a bit - and they are really helpful in targeting the right muscles to strengthen and showed me how to exercise the right way so as not to hurt myself. Slow and steady, no jerky movements. Rather go slow and have good technique than go balls to the wall and hurt yourself.

Pilates is probably the best, but its CRAZY expensive. I did really enjoy pole fitness, its so much fun and great for working your core and back muscles, my lung function took a nose dive so I had to stop.

I have a bunch of other health issues so whenever I'm in hospital I take full use of the physios. I love physios.

I would highly recommend a good pillow! I got a tempur contour pillow and my neck issues have hugely improved.

LaisyDucky OP t1_j9t9jof wrote on February 24, 2023 at 12:02 PM

Thank you for sharing your story! I hope your body is treating you well - you certainly do your part. It’s super cool to meet someone with so much in common, down to the rice krispy neck haha (Im not diagnosed with spina bifida occulta though). I remember swearing up and down that my waist curved differently on each side - welp.

I especially appreciate the recommendations: I was only diagnosed months ago after losing weight. Due to my poor lifestyle/rapid weight loss, all of my muscles are incredibly weak. My arms shake when I take out a damn garbage bag! Aside from PT and osteopathic manipulation, I haven’t learnt or done a lot for myself. Yet!

My pain has gotten better with daily exercise and stretching whenever I get the chance. I’m working on tolerance as well though - I feel constant pain but it’s likely in my head. My job requires me to look down all the time (despite my work-arounds) so I have to learn to be okay with it anyway!

I might look into ballet! I’ve been wanting to challenge myself and move into something new. I will definitely have to find some brains to pick myself, PT was waaay too expensive for me. Again, thank you so much!!

MzFrazzle t1_j9tc4ai wrote on February 24, 2023 at 12:29 PM

Its likely not in your head, when I sat for hours at a drawing board in university it wasn't fun. I remember one night I just sort of toppled sideways because I was too stiff to move when I was done and just stayed like that for a while.

A good anti-inflammatory + a good pillow does wonders!

I'd recommend seeing a biokineticist. They're cheaper than you'd expect (at least here they are anyway). I started with mine from the sports-science dept at university. I think I was part of her thesis.

A large gym or physio practice might have one or two.

They develop a workout plan for you and walk you through it. You only go back every 8 weeks or so to adjust the plan as you get stronger. They typically have a masters degree, so they are way better than some guy who did a 2 week course to be a trainer.

Dancing or Yoga is a great start!

LaisyDucky OP t1_j9teuys wrote on February 24, 2023 at 12:55 PM

That sounds awful! Im lucky enough to not work as much as I used to, so I am not stuck in one place as long. Hopefully the same for you.

I’ve been looking at a lot of pillows! The tempur contour pillow seems worth the price, and it’s better than the weird one I picked lmao. I need to use my prescription more as well…

Thank you though! The next time I see my doctor, if I am still in the need, I will ask him about it. My PT had 20 yrs under their belt, but I totally get your sentiment.

MzFrazzle t1_j9tg24h wrote on February 24, 2023 at 1:06 PM

I'm an architect, so its primarily a desk job with some site work.

University was just particularly brutal. They took pleasure in breaking us. I think I saw everyone cry at least once.

0/10 would recommend.