For me personally, at worst its in bed crying and not even believing how severe the pain can be. Feeling like I'm in a pit of fire and believing I am going to burst into falmes. Waking up every morning and even from naps with numb hands. Being on heavy hitters like oxycodone and lyrica , and still feeling like hell.
But, also knowing that some days this is totally manageable. Knowing that there will be better treatments one day. Hopefully soon.
Knowing I can sleep to escape the pain. My heart goes out to you.
Use this forum as a lifeline- I think many of us do.