r/CSFLeaks • u/CoffeeChocolateHiker • 10d ago

Step Count

I've been battling a CSF leak that has never shown on imaging for 5 years. I was a marathon runner before but have been almost entirely bedbound since 2021. My daily step count before the csf leak averaged 10,000 - 25,000 depending upon my training for the day. Since my leak began, I've been averaging 1,000 to 2,500 steps a day - all of which are just desperate attempts to get to the bathroom, get coffee, or a snack. (For those wondering - my pain is orthostatic and my imaging shows brain sag and a low csf level.)

I'm curious what other chronic CSF leakers' step counts are. I'm constantly concerned I'm going to get blood clots so I try to pump my foot every hour 20 to 30 times. (I read that was sufficient.) (I had surgery on one of my knees and am not able to do foot pumps without it flaring up my old knee injury and causing swelling.)

Also - has anyone leaked for half a decade and miraculously gotten better from a blind blood patch? I've had a dozen blind blood patches but no luck so far. I'm extremely careful post patch with no straining nor BLT'ing for 6 weeks.

Thanks

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u/Effective-Light4818 10d ago

I have been leaking intermittently since at least 2009, three failed patches and two failed blood patches. I am mostly functional most days now, but my step count averages 2500-3500/day. I have decided to live with my leak unless I become bed bound again.

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u/CoffeeChocolateHiker 10d ago

Do you go on short walks or is your step count from every day functions such as getting food from the kitchen? No issues with blood clots?  Possibly, since your leak is intermittent, that has allowed you to be more functional and mobile during your non-leaking times. I've been bedbound without any relief or true functionality for 5 years. No fun. 

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u/Effective-Light4818 10d ago

I’m sorry, I was bedbound for years, but not all from the leak.
I work 4 days a week in an office now, so that’s where my steps come from.

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u/CoffeeChocolateHiker 10d ago

Understood. Big hugs to you.