Facebook Live with Cynthia Toussaint and John Garrett | CRPS, Cancer, and Caregiving

[@nancyboal3581]

My RSD doc taught me to do my own block. It has been a God send.. it is a Sphnoid ganglion block using a long 1 sided cutip and 4% liquid lidocaine. I go down the sinus cavity and let the lidocaine rest on a nerve bundle. The doc wasn’t sure how far it covers on the body, but I am treating my toes and it’s helping. So it seems it helps the whole body. The great thing about it is as soon as a body part ‘flares’, I can get right in it! Morning and night. I can feel the nervous system kicking up a storm. The block makes the kicking less and less till I am ok again. I can also tell if I am inflamed as the passage way feels smaller. So I know to take an anti inflammatory. Hope this info helps!

[@AmethystWoman]

Easy for people without trauma to tell us to get over it. I'm 68. Got CRPS when I was 24. That's a lot of life gone. Very few friends even know I live with pain.

[@AmethystWoman]

Sister 40 years later "You still have that"? I don't know anyone IRL with CRPS. And have never seen anyone who has lived with CRPS for 40+ years. (1979)

[@dorenehendricks6627]

RSD sucks 20 years every day is a struggle lose of muscle and lifting a 1/2 milk weights a ton but life goes on

[@AmethystWoman]

I had covid and massive covid spread before their WAS a vaccine. As far a vaccine goes, if you think vaccine caused issues, having the inflammation of covid itself is worse.

[@butterflybeatles]

Each word of CRPS is meaningless -- except for Pain.

[@nancyboal3581]

Pain, as I am sure you know, is something is wrong. It is a neuro disorder. You should be able to get the pain settled.. with the right treatment….. hence the name reflex sympathetic dystrophy. I know, the medical industrial complex changed the name for filing insurance. But in my world, it is still RSD, as that says what it is.