Hi Chris - This “coldness” is probably the most painful part of my neuropathy, sometimes a bit intolerable. It’s mostly my feet that’s hardest to cope with, but my hands get it too. It seems to all stay contained to ankles-toes and wrists/fingers. If I’m outside in the heat, the same extremities burn more uncomfortably as well, but that’s more easily calmed after getting out of the warmth. Thawing out that internal iciness doesn’t have any quick fix. I get some regular internal nerve pain with my PN, from knees-toes and elbows-fingers which stays very tolerable as long as I stay on my 3x day of Gabapentin. This same Gabapentin has remarkably improved the heat and cold intolerance since this Neuropathy started 7 years ago. At onset, I would (try to) sleep with sock layers and gloves, then kick everything off and grab cold clothes, all night long for months. So while this iciness I have still just downright hurts at times, I’m very grateful for the improvement since 2016!
My husbands feet don’t help since I wear socks all the time, unless in shower or pool. Those water moments can add to the quick freeze, so I try to be careful with temps, though sometimes it’s after I leave the water that iciness sets in, maybe the air impact on water? That includes hot tubs and saunas, as those extreme heat events don’t like me. I shower in lukewarm water, wash dishes when they’ve cooled enough from their hot soak. The ice events, as you know, come out of nowhere most of the time. For me a trend seems to be while driving or riding in a car and sitting in restaurants & offices. Even if I am smothering in heat by controlling the car temperatures and flow on feet, I have not made it work. There’s something about working on my computer that sends the iciness to my hands as well regardless of me having all vents in the area closed if at home. I haven’t figured out the cold triggers.
What I know is that these deep freeze feeling events are painful. The frozen numbness disrupts function. While I’ll continue to do as much wiggling, shaking, and massage of feet/toes/hands/fingers to try to help recovery whenever I’m at a place to do so, these frequent episodes often just take about 30 minutes to resolve on its own, gradually subsiding. I probably have 5 long bothersome events per week, but many very short lived events I’m able to smile through. It hurts, but the safety hazard and concern is the extreme numbness that affects feeling and control of the extremities, and balance while I’m on my feet. I almost had a panic attack last week while in a doctor’s waiting room and thought I couldn’t feel my feet at all when I stood when called. I kept my eyes on my feet because I thought I was walking on ice blocks and just had no feeling. It ran its course thank God. When I’ve had hospital stays, nurses constantly have to pile on warm blankets for my feet but I’m helpless trying to keep hands with IV’s in them insulated.
Maybe others have solutions Chris, I know we’re not alone. I know it’s not a circulation issue, and not diabetes, that’s all been tested on me. In the meantime, stay in the good graces of your partner for his warm nighttime feet!