Vrae, that's why I'm so nervous about even a small surgery as in lopping off the end of a toe. From everything I've read, ANY trauma can set off RSD. And no surgeons we're likely to get know much about it, not enough to make me comfortable anyway. A stroke IS brain trauma and discectomies are definitely trauma.

The lightning bolts of pain that enter my toes can cause my leg to fly up in the air. Peripheral Neuropathy. That happens much less now but is still often the result of removing a shoe and my foot is screaming, even without the lightning bolts.

Can you describe a bit more about painful numbness? I'm wondering if my foot qualifies...

The way I have described it to ohers is this - imagine your leg submerged in ice water for 30 minutes........that is painfully numb!,

Mine worsens with weight bearing, improves with elevating the leg, but is constanly there.

Vrae - our stories are remarkably similar. So interesting.

I used exactly that phrase describing it to my husband yesterday! It's horrible. Hope yours is easier today.

Bram.

As I remember, my hand still felt like it was burning while submerged in ice water.

RSD RENEE, I think I've already read enough of the experiences of others to not chance the amputation. Risking the RSD is why I have been putting it off all these years.

My foot and ankle are such a mess, one recommended MD who specializes in foot/ankle stuff, said he'd have to break all the bones in my foot and ankle and rebuild me a good foot. That was 5-6 yrs ago.

He did get me out of the AFO with about 6 months of 3x/wk PT, so that was good.

Thanks for the feedback, everyone! I didn't know that others felt the painfully numb, icy sensation too because I read so much about the burning. I had a lot more of the burning back in the beginning, when I woke each morning my leg looked & felt sunburned. I still get the burning but not as intense. I also get some odd sensations like my leg / foot will feel wet when it is dry - I go through a ridiculous number of socks each day because they feel cold & wet to my foot LOL :-)

LOL. Thought this one was just me Lottie!!!

I actually carry around another pair of socks with me because mine will just feel like I've soaked them in ice cold water, wrung them out and put them on. Yeuch. I feel like I've been walking round in wet shoes, outside, on a cold day.

Bram.