My GP said i had NP but when i went to specialist, he said No, need to check for anemia, said feet shouldn't be cold to the touch with PN, i will let you know when i meet with doctor ad get other labs done.
@val1980 Perhaps further testing is to rule out other possibilities. Have you been diagnosed with peripheral neuropathy? Do you know your underlying cause, if so?
My feet would be cold and I'd need heat packs to get warmth back and to wear warm socks with fleece lined slippers 24/7. On the other hand, I also went through a spurt where my feet were on fire, could not wear socks, shoes, slippers. They would flare with heat, turn bright red and I could not tolerate anything touching them until they settled. Yes, there was a mixture of both hot and cold, unfortunately.
@rwinney, I have the exact same symptoms of burning pain and red feet when wearing footwear or socks. I've found that wearing fleece lined footwear (like Ugg shoes and boots) helps a little. My neurologists thinks it's a form of erythromelalgia associated with the small fiber neuropathy.
I also suffer from very cold feet when exposed to cold. I think I prefer the cold to the hot, so I go around barefoot, or wear flip flops, even in the winter.
How long did it take you to go from burning to freezing? You called it a "spurt" in your post.
Thanks
Jeff
@rwinney, I have the exact same symptoms of burning pain and red feet when wearing footwear or socks. I've found that wearing fleece lined footwear (like Ugg shoes and boots) helps a little. My neurologists thinks it's a form of erythromelalgia associated with the small fiber neuropathy.
I also suffer from very cold feet when exposed to cold. I think I prefer the cold to the hot, so I go around barefoot, or wear flip flops, even in the winter.
How long did it take you to go from burning to freezing? You called it a "spurt" in your post.
Thanks
Jeff
@jeffrapp Hey Jeff - I cant remember how long it took between hot and cold spurts. Last year was very revealing and alot came at me from neuropathy. I was regulating my B12 deficiency (cause of SFN) for months. I developed a miserable case of Chilblains, as well, which muddied the waters. My legs began to die (as I call it) and my feet/toes went through phases of burning heat, ice cold, blisters, sores, profuse itching, redness, purple and blueish/grey coloring, and an inability to have socks or shoes on. If I wore shoes...they were untied, lose sneakers or slip on fleece lined Ugg boots (as you mention) for a limited time. I felt alot of tightness and pressure in my feet when they flared hot. Chilblains is known to be a reaction from ice cold feet. Because my feet were frozen all the time, I was irresponsibly submerging them in hot water (we have a hot tub), which was a recipe for disaster. I learned when changing temps while having neuropathy, its better to gradually ease into new temps. All sensory dysfunction. I also have a painful right toe leading up into my foot which was cleared orthopedically and chalked up to neuropathy. Such a mixed bag and as far as helping you with your question....well, what a crap shoot that anyone with neuropathy is identical to the next person with neuropathy, but, we dang sure like to try and find comfort in numbers. This year, my feet have way less burning flares and a more regulated ice factor. It all still happens but, not to such miserable degrees. I've grown smarter too, plus my B12 is regulated and I take my supplement protocol. I'm left with pain, aching and weakness, and what I think is a overloaded pain system. I wish you the best Jeff and hope your feet behave better for you.
Rachel
@rwinney, I have the exact same symptoms of burning pain and red feet when wearing footwear or socks. I've found that wearing fleece lined footwear (like Ugg shoes and boots) helps a little. My neurologists thinks it's a form of erythromelalgia associated with the small fiber neuropathy.
I also suffer from very cold feet when exposed to cold. I think I prefer the cold to the hot, so I go around barefoot, or wear flip flops, even in the winter.
How long did it take you to go from burning to freezing? You called it a "spurt" in your post.
Thanks
Jeff
No, I haven't.
To tell you the truth, I'm a bit burned out on new treatments, having spent the past 3 years helping to support the PN Treatment Industry, not to mention Amazon.
I've come to look at this somewhat simplistically. I know I have an anatomic defect (lack of small nerve fibers proven by skin biopsy). Until or unless those nerves grow back, I expect to have to deal with the pain. I don't believe much of anything will work more than a little in relieving the symptoms, including standard meds.
What I do believe will and does work is distraction and mindfulness, which almost anybody with this or other chronic pain syndromes can prove to themselves, by noting that when distracted, they can have a few moments being pain free. Everything is the same, but you don't notice the pain, because you're not paying attention to it. The opposite happens when things become bad enough to the point where the anxiety causes a hyper-awareness state, which leads to even more pain.
The hard part is training yourself to make those moments last longer. As usual, easier said than done. No magic bullet, just hard work.
No, I haven't.
To tell you the truth, I'm a bit burned out on new treatments, having spent the past 3 years helping to support the PN Treatment Industry, not to mention Amazon.
I've come to look at this somewhat simplistically. I know I have an anatomic defect (lack of small nerve fibers proven by skin biopsy). Until or unless those nerves grow back, I expect to have to deal with the pain. I don't believe much of anything will work more than a little in relieving the symptoms, including standard meds.
What I do believe will and does work is distraction and mindfulness, which almost anybody with this or other chronic pain syndromes can prove to themselves, by noting that when distracted, they can have a few moments being pain free. Everything is the same, but you don't notice the pain, because you're not paying attention to it. The opposite happens when things become bad enough to the point where the anxiety causes a hyper-awareness state, which leads to even more pain.
The hard part is training yourself to make those moments last longer. As usual, easier said than done. No magic bullet, just hard work.
I'm with you Jeff. It took me a couple of years to iron out my thoughts and come to the conclusion and acceptance that you've stated. Now, my sights are set on my own inner being which as you say is hard work. Agreed...its a 24/7 job. Some days I'm an exemplary employee and other days I'm exhausted from the battle and I call in sick.
Hey - thanks for providing strength and clarity through your posts. Great to have you on board.
I'm with you Jeff. It took me a couple of years to iron out my thoughts and come to the conclusion and acceptance that you've stated. Now, my sights are set on my own inner being which as you say is hard work. Agreed...its a 24/7 job. Some days I'm an exemplary employee and other days I'm exhausted from the battle and I call in sick.
Hey - thanks for providing strength and clarity through your posts. Great to have you on board.
No good heat sources are available. Wearing socks is just a start—A minimum. Heating pads and heat throws turn off after two or three hours, and are unsuitable if your legs while sleeping. Electric blankets don’t get hot enough and must be wrapped around feet in the summer. Wires get tangled up and Electric blankets aren’t supposed to be folded. Heated socks don’t get warm enough and last only a short while. Microwavable hot pads and heated socks lose heat after five or 10 minutes. The hunters foot warmers and handwarmers don’t get warm enough, don’t last long, and are expensive. Now I tape The “18 hour“ body pads to my socks. They are supposed to get 140°. But they are supposed to be exposed to air (not under an additional pair of socks), so I try to tape along the borders. Seems like there would be a medical device for this.
No good heat sources are available. Wearing socks is just a start—A minimum. Heating pads and heat throws turn off after two or three hours, and are unsuitable if your legs while sleeping. Electric blankets don’t get hot enough and must be wrapped around feet in the summer. Wires get tangled up and Electric blankets aren’t supposed to be folded. Heated socks don’t get warm enough and last only a short while. Microwavable hot pads and heated socks lose heat after five or 10 minutes. The hunters foot warmers and handwarmers don’t get warm enough, don’t last long, and are expensive. Now I tape The “18 hour“ body pads to my socks. They are supposed to get 140°. But they are supposed to be exposed to air (not under an additional pair of socks), so I try to tape along the borders. Seems like there would be a medical device for this.
Hello @footblizzard, Welcome to Connect. I know it's a terrible feeling when your hands, feet and legs get extremely cold and nothing you do makes them feel warmer. I have neuropathy also but no pain. Winter time presents a problem for me when I have to be outside clearing snow. I use the hand warmers, feet warmers and also neoprene sleeves that slide over the socks and cover the front half of your foot. The neoprene sleeves doe help my toes and my feet stay comfortable unless I'm outside a really long time. In the winter time, I also wear the sleeves over my socks that I use for sleeping at night. They do help keep my feet reasonable warm.
There are some other conditions besides neuropathy that can cause your feet to feel cold --- Why Do I Always Feel Cold, and Can I Treat It?: https://www.healthline.com/health/always-cold
Have you discussed possible causes with your doctor or do they say it's from your neuropathy?
Sorry to read about you issues with cold feet due to PN. Unfortunately you're never going to accomplish your goal of warming up your feet due to your misconnected peripheral nervous system. Reading the way you're headed you may end up burning yourself or worse. You cannot, so far, regain what you've lost peripheral nerve wise. There are clinical trials currently investigating the redevelopment of peripheral nerves but not so far. Please be careful with your leg skin since you cannot feel temperature any longer?
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My GP said i had NP but when i went to specialist, he said No, need to check for anemia, said feet shouldn't be cold to the touch with PN, i will let you know when i meet with doctor ad get other labs done.
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2 Reactions@rwinney, I have the exact same symptoms of burning pain and red feet when wearing footwear or socks. I've found that wearing fleece lined footwear (like Ugg shoes and boots) helps a little. My neurologists thinks it's a form of erythromelalgia associated with the small fiber neuropathy.
I also suffer from very cold feet when exposed to cold. I think I prefer the cold to the hot, so I go around barefoot, or wear flip flops, even in the winter.
How long did it take you to go from burning to freezing? You called it a "spurt" in your post.
Thanks
Jeff
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2 Reactions@jeffrapp Hey Jeff - I cant remember how long it took between hot and cold spurts. Last year was very revealing and alot came at me from neuropathy. I was regulating my B12 deficiency (cause of SFN) for months. I developed a miserable case of Chilblains, as well, which muddied the waters. My legs began to die (as I call it) and my feet/toes went through phases of burning heat, ice cold, blisters, sores, profuse itching, redness, purple and blueish/grey coloring, and an inability to have socks or shoes on. If I wore shoes...they were untied, lose sneakers or slip on fleece lined Ugg boots (as you mention) for a limited time. I felt alot of tightness and pressure in my feet when they flared hot. Chilblains is known to be a reaction from ice cold feet. Because my feet were frozen all the time, I was irresponsibly submerging them in hot water (we have a hot tub), which was a recipe for disaster. I learned when changing temps while having neuropathy, its better to gradually ease into new temps. All sensory dysfunction. I also have a painful right toe leading up into my foot which was cleared orthopedically and chalked up to neuropathy. Such a mixed bag and as far as helping you with your question....well, what a crap shoot that anyone with neuropathy is identical to the next person with neuropathy, but, we dang sure like to try and find comfort in numbers. This year, my feet have way less burning flares and a more regulated ice factor. It all still happens but, not to such miserable degrees. I've grown smarter too, plus my B12 is regulated and I take my supplement protocol. I'm left with pain, aching and weakness, and what I think is a overloaded pain system. I wish you the best Jeff and hope your feet behave better for you.
Rachel
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2 ReactionsJeff - have you ever tried myofacial release?
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2 ReactionsNo, I haven't.
To tell you the truth, I'm a bit burned out on new treatments, having spent the past 3 years helping to support the PN Treatment Industry, not to mention Amazon.
I've come to look at this somewhat simplistically. I know I have an anatomic defect (lack of small nerve fibers proven by skin biopsy). Until or unless those nerves grow back, I expect to have to deal with the pain. I don't believe much of anything will work more than a little in relieving the symptoms, including standard meds.
What I do believe will and does work is distraction and mindfulness, which almost anybody with this or other chronic pain syndromes can prove to themselves, by noting that when distracted, they can have a few moments being pain free. Everything is the same, but you don't notice the pain, because you're not paying attention to it. The opposite happens when things become bad enough to the point where the anxiety causes a hyper-awareness state, which leads to even more pain.
The hard part is training yourself to make those moments last longer. As usual, easier said than done. No magic bullet, just hard work.
-
Like -
Helpful -
Hug
4 ReactionsI'm with you Jeff. It took me a couple of years to iron out my thoughts and come to the conclusion and acceptance that you've stated. Now, my sights are set on my own inner being which as you say is hard work. Agreed...its a 24/7 job. Some days I'm an exemplary employee and other days I'm exhausted from the battle and I call in sick.
Hey - thanks for providing strength and clarity through your posts. Great to have you on board.
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2 ReactionsYes, good days and bad days, with no apparent reason most of the time. Loki must be the god of peripheral neuropathy.
Hang in there
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4 ReactionsNo good heat sources are available. Wearing socks is just a start—A minimum. Heating pads and heat throws turn off after two or three hours, and are unsuitable if your legs while sleeping. Electric blankets don’t get hot enough and must be wrapped around feet in the summer. Wires get tangled up and Electric blankets aren’t supposed to be folded. Heated socks don’t get warm enough and last only a short while. Microwavable hot pads and heated socks lose heat after five or 10 minutes. The hunters foot warmers and handwarmers don’t get warm enough, don’t last long, and are expensive. Now I tape The “18 hour“ body pads to my socks. They are supposed to get 140°. But they are supposed to be exposed to air (not under an additional pair of socks), so I try to tape along the borders. Seems like there would be a medical device for this.
Hello @footblizzard, Welcome to Connect. I know it's a terrible feeling when your hands, feet and legs get extremely cold and nothing you do makes them feel warmer. I have neuropathy also but no pain. Winter time presents a problem for me when I have to be outside clearing snow. I use the hand warmers, feet warmers and also neoprene sleeves that slide over the socks and cover the front half of your foot. The neoprene sleeves doe help my toes and my feet stay comfortable unless I'm outside a really long time. In the winter time, I also wear the sleeves over my socks that I use for sleeping at night. They do help keep my feet reasonable warm.
There are some other conditions besides neuropathy that can cause your feet to feel cold --- Why Do I Always Feel Cold, and Can I Treat It?: https://www.healthline.com/health/always-cold
Have you discussed possible causes with your doctor or do they say it's from your neuropathy?
-
Like -
Helpful -
Hug
2 ReactionsSorry to read about you issues with cold feet due to PN. Unfortunately you're never going to accomplish your goal of warming up your feet due to your misconnected peripheral nervous system. Reading the way you're headed you may end up burning yourself or worse. You cannot, so far, regain what you've lost peripheral nerve wise. There are clinical trials currently investigating the redevelopment of peripheral nerves but not so far. Please be careful with your leg skin since you cannot feel temperature any longer?
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Like -
Helpful -
Hug
2 Reactions