Greeting all:
I'm trying to figure out if I can somehow add more physical activity in my life that does not aggravate the condition. I've read that swimming may be good but just 1 lap in the pool causes me a severe pain for 2 days. I'm thinking, possibly swim pants & gloves may soften swim a bit and not irritate nerves as much? Any particular brands/types that are recommended for folks like us?
Thanks for your input.

Welcome njtech.

I cannot swim anymore either. It was one of my greatest joys to be in a pool.
I now go to a handicap pool that is 85'. I don't swim, just slowly walk and have to stop every few minutes.
I can't tolerate a normal temperature pool. I have a regular one piece swimsuit.
When I am in the water, it is the only time I feel a little normal. The burning is less. It is the only thing besides medication that helps a little. I only have 25-50% pain relief.
As far as clothes, I am now wearing 100% cotton, silk, and au natural, as it is painful to wear clothes.
Hope the water helps.

Thank you folks. Oh, it wasn't meant to be easy!
Wish, it will get better over time.

Good question; being female, I can't have a top that goes around my neck...this causes sever pain; Also I can't wear a baggy top because once it becomes wet, it becomes to heavy around the neck...it's a hit or miss...keep up the fight....

Hi Baba222,

When u say you can't tolerate a normal temp pool, are you saying its too warm or too cold? Thanks!

I can't tolerate the cold or too hot.

A warm pool is tolerable.

Hope that helps.