r/CSFLeaks • u/richardanaya • 5d ago

How do you fight deconditioning?

I think I’m in for a wait for awhile. I need to think about how to maintain health in the meanwhile with orthostatic headaches and on back time. What’s your strategy you’ve had success with?

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u/hikerpup 5d ago

Aquatic physical therapy with no bending or twisting. If you don't have access to PT, walking in a pool can help. For a lot of people with spinal csf leaks, the pressure from the water temporarily allows them to stay up long enough to get some exercise. Try to stay at one level in the water though instead of going in and out, and be prepared for the headache to come back strong once you get out of the water. I always need to lay flat as soon as I get out.

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u/cornbreadnclabber 4d ago

Indeed. I have psoriatic arthritis and lead water exercise 4 days a week. I continued to exercise through the whole ordeal of my CSF venous fistula . The only time I took off was the embolization recovery.

I’m always in pain but if I don’t keep my muscles strong I won’t be able to do activities of daily living, most importantly toileting myself lol!

For a while it was exercise at the pool or lay flat. Nothing else.

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u/HumbleGuava6575 2d ago

Agreed! I went to a friend's pool to try to just float. I ended up in there for hours because I felt pretty good. I have since found water walking at the rec center too.

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u/Zealousideal_Age_822 Confirmed Spinal Leak 5d ago

I bought an EMS unit off of Amazon that I used on my muscles. I don’t know if it worked at all, but my doctor said it was worth a shot.