Cold feet due to neuropathy - need help

Posted by napa @napa, Feb 9, 2020

Hello, I have extremely cold feet due to my neuropathy. The doctors cannot help. Any suggestions or help? Thank you!

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

Napa, Oh, those darn cold feet. I wear RockDove house slippers around the house. I drive in them too. I also use Cozy Winters bed warmer at night. A post about it below. Natures Way Magnesium Complex 500 mg 2 caps about 4 or 5 pm when I am done running around. Walking helps circulation which helps warm my feet so while watching tv I walk around every hour or so. At bedtime I apply small amount of Life-flo magnesium lotion unscented just before tucking my feet in on the Cozy Winters foot of bed Warmer and my feet stay warm most of the night… enough that I sleep pretty well. Also use THC:CBD gummies sometimes. That’s my go-to list. Darn cold feet! Hope some of this helps you. Wishing you warmer toes as winter sets in. Bcool123

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I have small fiber neuropathy. My toes and feet become freezing cold together with extremely painful every evening and night. I have not found anything to relieve this extreme cold and pain. (Blowing warm air from a hair dryer on my feet does not help.) All the usual Rx pain medications (e.g., Gabapentin, lyrica, cymbalta), and warm socks and blankets do not help. Extra-stength Tylenol reduces the pain but my liver does not like the Tylenol.

I'd like to hear from other small fiber neuropathy patients what you find can stop or reduce the pain from these freezing cold episodes?

Thank you

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@sfn

I have small fiber neuropathy. My toes and feet become freezing cold together with extremely painful every evening and night. I have not found anything to relieve this extreme cold and pain. (Blowing warm air from a hair dryer on my feet does not help.) All the usual Rx pain medications (e.g., Gabapentin, lyrica, cymbalta), and warm socks and blankets do not help. Extra-stength Tylenol reduces the pain but my liver does not like the Tylenol.

I'd like to hear from other small fiber neuropathy patients what you find can stop or reduce the pain from these freezing cold episodes?

Thank you

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Neuropathy also causes my fingers to feel cold as well. I wear boots & gloves in the house. I have learned that if I ever get my feet and hands warm , it is so very easy to keep them warm than make them warm again if I allow them to get cold again. Hope that makes sense.

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@sfn

I have small fiber neuropathy. My toes and feet become freezing cold together with extremely painful every evening and night. I have not found anything to relieve this extreme cold and pain. (Blowing warm air from a hair dryer on my feet does not help.) All the usual Rx pain medications (e.g., Gabapentin, lyrica, cymbalta), and warm socks and blankets do not help. Extra-stength Tylenol reduces the pain but my liver does not like the Tylenol.

I'd like to hear from other small fiber neuropathy patients what you find can stop or reduce the pain from these freezing cold episodes?

Thank you

Jump to this post

I use a hot water bottle as my first choice.

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@sfn

I have small fiber neuropathy. My toes and feet become freezing cold together with extremely painful every evening and night. I have not found anything to relieve this extreme cold and pain. (Blowing warm air from a hair dryer on my feet does not help.) All the usual Rx pain medications (e.g., Gabapentin, lyrica, cymbalta), and warm socks and blankets do not help. Extra-stength Tylenol reduces the pain but my liver does not like the Tylenol.

I'd like to hear from other small fiber neuropathy patients what you find can stop or reduce the pain from these freezing cold episodes?

Thank you

Jump to this post

Hi Jordan @sfn, I also have small fiber neuropathy and experience cold feet at night but mine don't feel quite as bad as yours and I don't have pain. You will notice that we moved your post to an existing discussion here so that you can meet other members experiencing similar symptoms:
--- Cold feet due to neuropathy - need help: https://connect.mayoclinic.org/discussion/cold-feet-need-help//

If you click the link above it will take you to the beginning of the discussion where you can read what other members have shared.

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@sfn

I have small fiber neuropathy. My toes and feet become freezing cold together with extremely painful every evening and night. I have not found anything to relieve this extreme cold and pain. (Blowing warm air from a hair dryer on my feet does not help.) All the usual Rx pain medications (e.g., Gabapentin, lyrica, cymbalta), and warm socks and blankets do not help. Extra-stength Tylenol reduces the pain but my liver does not like the Tylenol.

I'd like to hear from other small fiber neuropathy patients what you find can stop or reduce the pain from these freezing cold episodes?

Thank you

Jump to this post

It’s sad that Gabapentin didn’t work, given that it’s one of the better choices for those with liver concerns. My initial dosage didn’t work for me, but in time, with increases, I got to a point where the extreme cold extremities happened much less frequently and became so much more tolerable than the first few months when my severe neuropathy suddenly started. I hope you find a manageable solution, because for me, I think the pain and misery from cold feet and hands is worse than normal neuropathy nerve pain.

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@jimhd

@napa

I have idiopathic small fiber peripheral polyneuropathy and I often have a hard time deciding if my feet are cold or burning.

Jim

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I am so interested in seeing these comments about cold feet. I have been told I have peripheral neuropathy, but was also told by a neurologist that it doesn’t cause cold feet and legs. So I am confused. They are now sending me to have a vascular test. At the same time, my upper body can feel like there is a heat wave in the room, while I have a a heating pad on my feet to warm them up. Very confusing. @pat79

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@dbeshears1

It’s sad that Gabapentin didn’t work, given that it’s one of the better choices for those with liver concerns. My initial dosage didn’t work for me, but in time, with increases, I got to a point where the extreme cold extremities happened much less frequently and became so much more tolerable than the first few months when my severe neuropathy suddenly started. I hope you find a manageable solution, because for me, I think the pain and misery from cold feet and hands is worse than normal neuropathy nerve pain.

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Hi there @dbeshears1. This cold feet discussion is very interesting. My feet are usually "cool". When they become extremely cold.......they feel like liquid ice and actually become untouchable. Actually, I can go to bed with warm feet and be awakened with freezing feet. So....wrapping them in a blanket doesn't seem to help. I am better off just letting them be and trying to go back to sleep or get to sleep.

Here's how my life partner helps me. He always has warm feet so he moves his over onto mine. Now isn't that a sweet thing to do? He also doesn't think my feet feel as cold to him as they do to me because they are part of my body and not his.

My feet can also become freezing cold while riding in the car or walking along the river. Is that true for you too? Does the cold move up to mid-calf? Mine stays about ankle height.

Let's stay in touch on this dilemma. There has to be a solution just waiting for discovery.

May you have a restful evening.
Chris

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@artscaping

Hi there @dbeshears1. This cold feet discussion is very interesting. My feet are usually "cool". When they become extremely cold.......they feel like liquid ice and actually become untouchable. Actually, I can go to bed with warm feet and be awakened with freezing feet. So....wrapping them in a blanket doesn't seem to help. I am better off just letting them be and trying to go back to sleep or get to sleep.

Here's how my life partner helps me. He always has warm feet so he moves his over onto mine. Now isn't that a sweet thing to do? He also doesn't think my feet feel as cold to him as they do to me because they are part of my body and not his.

My feet can also become freezing cold while riding in the car or walking along the river. Is that true for you too? Does the cold move up to mid-calf? Mine stays about ankle height.

Let's stay in touch on this dilemma. There has to be a solution just waiting for discovery.

May you have a restful evening.
Chris

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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!

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Part of my routine in trying to encourage nerve repair and muscle restoration is pedaling a stationary bike.
I have noticed on off days when not using the pedaling, the cold feet is most intense. I am beginning to pedal about 10 minutes every day to see if that is a better routine?
Has anyone else had this observation? I don’ t notice a similar benefit from walking.
Tom

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