Thanks for this Daylily! Interesting. So, my spine surgeon never really came out and told me what happened . I figured out for myself that I had CRPS based on tons of internet search. However, after reading about the Central Pain Syndrome I wonder if that applies to me? I had an Artificial Disc in my spine that broke, and the metal was migrating towards my spinal cord. It was an extremely difficult surgery to get the broken device out of my spine, and I woke up with the CRPS monster in my bed (HaHa). I have "painful numbness" in my right foot and ankle along with the temperature changes, skin color changes, burning sensation, sharp stabbing zingers & muscle atrophy. I haven't heard anyone else here say they have the painful numbness as part of their CRPS. Now I see it in the description of CPS, so I feel more confused

I have painful numbness. The largest area of numbness goes from right side of my calf to my toes. The right half of my foot. And also where the sciatica runs down the back of the thigh of that same leg is also numb. Some of the worst pain and spasms I endure is in that leg. I woke up from surgery with this numbness that has gotten better but has never resolved to normal again. Upon waking from surgery I also felt as though my ankle was shattered. Literally.

So, I'll co-sign the painful numbness part. Along with all those other things we deal with.

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...

I can tick that box too...sometimes it's almost as though that part of me just isn't there...very unnerving. Particularly when two minutes later it can be hurting like hell for no apparent reason.

I suppose the numbness part doesn't get mentioned as much because compared to the other symptoms it's a frickin walk in the park

Take care all, and sleep well if you can.

Bram.

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.

Hi Sage and welcome back. I'm sorry you're having such tough time and hope and pray that you will feel better soon whatever you decide to do with your toe.

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 :-)