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Hop

699d

Hey everyone! I’m hope I’m 18 and have caudal regression syndrome but it’s similar to spina bifida! But does anyone do wheelchair racing? I’m having some pain from working out and want to know how y’all manage the pain :)

Top reply
    • Hop

      691d

      @strawberrysoop hey if you ever wanna try it out I can get you to some people or connections!!

    • strawberrysoop

      697d

      hello!! im theo! i would love to do wheelchair racing, but i dont think there's anything like that near me. unfortunately, my method of dealing with pain is removing any situation that could cause pain, so i dont move as much as i would like and im very sedentary. it's better in my mind to have relatively consistent mobility 9 days out of 10 vs one day of moderate mobility followed by being bedbound for the next week- however, im hoping to meet with a pain management specialist to help me get moving more often!!

      • Hop

        691d

        @strawberrysoop hey if you ever wanna try it out I can get you to some people or connections!!

    • RedandBlackFan

      698d

      I have spina bifida. I used to walk up until I was 28 years old. I am now 34 and bed ridden. I applaud you for trying to be as active as you can, just be careful bc it takes a toll on your body and then there’s repercussions to everything. I am on a lot of pain meds now I take oxycodone and clonazapam, for spasms and also I take gabapentin. Those all work well for me. I’ve had a back surgery when I was 29 to detether my spinal cord and I slowly long the ability to walk a year before. I never got it back. I hope none of that happens to you but my advice is to be very careful with your activity now bc you will have to pay for it later.

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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