Hi all,
I have nr-axspa and am currently in the throes of a 12 day and counting flare up. It’s been so tough, as I know everyone in this community knows, to manage the pain and figure out patterns across symptoms. But the question I’m specifically grappling with right now is how you all manage rest vs activity during flare ups.
One of the many difficulties of this disease is how symptoms generally improve with movement, which is why pain gets so bad at night and in the morning. When I’m not in a flare up, I’m borderline obsessive about getting 10k steps in daily and doing my physical therapy exercises to help stave off pain.
But when I’m in a flare up, I’m exhausted and sometimes struggle to even walk around my house. How do you all balance rest during a flare up when you know moving around might help to decrease the time of a flare up? On days where I let myself fully give into the fatigue and not move much, I usually experience a worsening of symptoms.
I’m really struggling to find out where the line of activity vs rest is during a flare up. Curious if you all could share tips that have worked for you — does doing PT help decrease flare up time if you can force yourself through it, etc?
Thank you in advance!
Erin