Chilblains and foot neuropathy

Posted by kmcp56 @kmcp56, Mar 19, 2025

It has been suggested to me that I post a question to the users of this forum about a medical condition that I have developed, possibly linked to repeated wading in cold water. For many years I fished in small streams throughout the winter in CT, wading in typical winter water temperatures. I wore either hip boots or waders, usually with heavy socks. After a number of years I noticed that the ends of my toes were red after exposure to cold water. It took a while, but I finally realized that I was getting chilblains, essentially a precursor to frostbite. Now, a handful of years later I have developed a very unusual neuropathy at the ends of both of my feet. My neuropathy is characterized by constant tingling, cold toes and aching pain, sometimes enough to cause me to wince. One truly odd feature of this neuropathy is that it is drastically reduced by standing on my feet. I have undergone every imaginable treatment for this to try to reduce the pain but nothing has worked.

My question is has anyone else experienced chilblains-induced neuropathy?

Interested in more discussions like this? Go to the Neuropathy Support Group.

John, Volunteer Mentor | @johnbishop | Mar 21, 2025

Hello @kmcp56, Welcome to Connect. @rwinney started another discussion that mentioned chilblains. I think you might find it helpful - Temperature intolerance and sensitivity - Autonomic Neuropathy?: https://connect.mayoclinic.org/discussion/temperature-intolerance-and-sensitivity-autonomic-nephropathy/.

Mayo Clinic has some information on Chilblains here but I'm assuming you have probably tried all of the suggestions - https://www.mayoclinic.org/diseases-conditions/chilblains/diagnosis-treatment/drc-20351103.

inmagic | @inmagic | Mar 22, 2025

I'm sorry that your love of fishing led to this discomfort. I was an avid skier and ski patroller and, over the years, developed chilblains on my toes. Years later, with the onset of SFN, the tips of my toes are so sensitive I can barely stand to feel the sheets on them at night. My feet always tingle, ache, and burn, but it's worse when I am flared up (along with many other SFN symptoms), so I do my best to avoid the foods that aggravate nerves, get good sleep, and maintain a balance of activity that doesn't worsen symptoms. I take low-dose naltrexone for pain and a small dose of gabapentin at night to calm the nervous system. I also take many supplements and herbal remedies that support nerve healing and the nervous system. I rarely focus on individual symptoms. I focus more on helping my body's overall ability to manage SFN. I do make a magnesium spray that I use when foot and hand burning is unbearable. I hope you figure something out!!!

raebaby | @raebaby | Mar 22, 2025

I had what I thought was erythromelalgia for 20 years. It turned out to be chilblains. My feet don't adjust to quick changes in temperature and it was awful in the winter. I had red sores on the tips of my toes in addition to other symptoms. I had read that Nephedipine helped and after one dose it was gone.I continue to take it for my high BP. I now have peripheral neuropathy. I had a slight bit before chemo and my Mom had it also. So it was partially hereditary ,the other chemo induced.
I'm 83 and as of this moment sitting in Cancun on vacation with my family, admiring the ocean from my hotel room. Life can go on and be good!

susanmaria | @susanmaria | Mar 25, 2025

Have you checked your thyroid levels? Check TSH, Free T3 and Free T4. Also thyroid antibodies.

kris2635 | @kris2635 | Feb 20 8:57pm

I’ve had chilblains for about 15 ish years. Just over 40 now but for the last few years, a couple of inner toes on my right foot will go completely numb. I don’t get the tingling like my foot fell asleep but they’re just totally numb. I do get the awful “feels like acid is being dripped on my toes” from the chilblains, though. Numbness happens sometimes when I’m standing or sometimes in the shower. It’s been a super cold winter this season and I’ve had the chilblains since just before Thanksgiving, and still have them now towards end of Feb. Toes are still discolored from the first ones and still getting new ones (hope it’s not permanent). They also look way more blue/purple in the shower under warm water and then look a little more normal once I get back to room temp. Of the 4 discolored ones, it’s just two toes that go numb. The feeling comes back as soon as I sit down or get out of the shower when it does happen. So far, I’m not seeing any actual studies that link Peripheral Neuropathy to chilblains. Have also had all forms of thyroid testing done, plus CBC and fasting bloodwork and all always comes back normal.

John, Volunteer Mentor | @johnbishop | Feb 21 7:44am

In reply to @kris2635 "I’ve had chilblains for about 15 ish years. Just over 40 now but for the last..." + (show)

Welcome @kris2635 - Thanks for sharing your experience with chilblains. You mentioned you haven't seen any actual studies that link PN to chilblains. I did a quick search using Google Scholar (https://scholar.google.com) and was surprised by the amount of articles available (haven't read them though). Just thought I would share it with you - https://scholar.google.com/scholar.

Have you used Google Scholar before?