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  • Does SMA cause you to have chronic fatigue?

    Posted by alyssa-silva on September 25, 2023 at 5:42 pm

    Chronic fatigue is no joke. I wrote a column recently about my experiences with it and how I’ve learned to live with its symptoms. I’ve gotten much better at resting and understanding/accepting my body’s limits, but sometimes it can be super frustrating and debilitating. 

    Does SMA cause you to have chronic fatigue? How do you manage?

    alyssa-silva replied 6 months, 3 weeks ago 2 Members · 2 Replies
  • 2 Replies
  • mark-pratt

    Member
    September 28, 2023 at 2:57 pm

    Living with type 3 for my whole life, you really can’t build strength, but I’m able to build endurance. Push yourself a little further to help build that endurance. Are you taking Evrysdi or Spinraza? I’ve been on Evrysdi for 1.5 years, at 68 it hasn’t increased my strength, but my breathing has gotten better. I believe you’re younger, and I’ve seen good improvement in some of my younger SMA friends on Evrysdi. When you get tired, try some breathing or meditation exercises to help your body relax. I’ve found them very helpful.

    • alyssa-silva

      Member
      September 29, 2023 at 9:50 am

      Hey Mark. I’ve been on Spinraza for just about 7 years now and have type 1. I’m just shy of turning 33. I definitely noticed improvements in my breathing and stamina, but in the early days of the pandemic, I had a few setbacks. That’s when the chronic fatigue started. Spinraza definitely alleviates those symptoms somewhat, but after about two months, it starts to wane.

      I will have to try some meditation exercises. I’m not the best at meditating (can’t seem to ever quiet my mind) but I’m getting a little better at it. Thanks for the tip.

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