Good evening @dancing1, it sure looks like we both experience similar color changes and temperature differences. Glad to meet you. My MFR therapist seems to know more about what is going on inside our feet and what it means. I will have to ask her again for an explanation.
Thank you so much. I think I just deleted my comment. My hands are swollen. Would do appreciate hearing more and learning how to cope with these challenges. I don’t have another neurologist appointment until next week. Thank you again!
Ray, something here caught my attention. Do your feet hurt only when you’re walking, or even when you’re at rest? If it’s the latter, then it’s probably neuropathy pain. Flat feet with good orthotics shouldn’t be that painful.
Just me playing devil’s advocate again!
Hi, julbpat. Possibly I should not have used the word "pain." When I'm walking, I'll sometimes feel "discomfort," which may be due to a number of causes: (1) not the best-fitting shoes, (2) failure on my part to trim my toenails, pumice the rough patches, etc., or (3) a bunched-up sock. I believe my orthotics are well-fitted to my feet. But that's about it: "discomfort" (sometimes) when I'm walking, but not what I would call "pain." Most telling, in my mind, when I consider my PN, is having no foot pain when I'm at rest, either barefoot around the hose (as now) or when sleeping. That's why my podiatrist and I both feel that my periodic foot "ouches" are mundane and not related to my PN. Have you made any progress toward getting relief? –Ray
Hi, julbpat. Possibly I should not have used the word "pain." When I'm walking, I'll sometimes feel "discomfort," which may be due to a number of causes: (1) not the best-fitting shoes, (2) failure on my part to trim my toenails, pumice the rough patches, etc., or (3) a bunched-up sock. I believe my orthotics are well-fitted to my feet. But that's about it: "discomfort" (sometimes) when I'm walking, but not what I would call "pain." Most telling, in my mind, when I consider my PN, is having no foot pain when I'm at rest, either barefoot around the hose (as now) or when sleeping. That's why my podiatrist and I both feel that my periodic foot "ouches" are mundane and not related to my PN. Have you made any progress toward getting relief? –Ray
Discomfort is way better than pain! When my neuropathy is misbehaving, my feet, especially toes, burn. It feels like they are submerged in ice water. Freezing combined with burning. Fortunately I rarely experience that anymore on Tegretol, but it’s really hard to sit and relax, or sleep, when your toes are burning! Glad to hear yours is just normal foot aches.
The bunched up sock feeling is familiar with length dependent small fiber neuropathy. My family is used to my stopping and removing a shoe to rearrange a sock (that is not bunched up), or shake out a tiny rock or grain of sand. I wear sandals in the yard, and no grass or leaves can be between my feet and the shoe! Lots of stopping and rearranging!
Discomfort is way better than pain! When my neuropathy is misbehaving, my feet, especially toes, burn. It feels like they are submerged in ice water. Freezing combined with burning. Fortunately I rarely experience that anymore on Tegretol, but it’s really hard to sit and relax, or sleep, when your toes are burning! Glad to hear yours is just normal foot aches.
The bunched up sock feeling is familiar with length dependent small fiber neuropathy. My family is used to my stopping and removing a shoe to rearrange a sock (that is not bunched up), or shake out a tiny rock or grain of sand. I wear sandals in the yard, and no grass or leaves can be between my feet and the shoe! Lots of stopping and rearranging!
Whatever helps! I suppose it doesn't matter whether a person's foot discomfort (and now I'll use discomfort rather than pain) is PN-related or not – if you've learned techniques that provide some measure of relief, that's what really matters. Here's to a good – minimal foot discomfort – day! –Ray
Hi. I'm on a compounded topical lotion for my foot and hip pain due to SFN. It helps for my feet. It's a combination of amitriptyline, ketamine and lidocaine. It works great for me at night. I put it on my feet and then put on socks and my pain subsides so I can sleep better. Unfortunately it's expensive and my insurance does not cover it. I pay $108 for a small amount in a pump container. The container is probably 1/2 the size of a voltarin tube.
I also had a compounded cream ordered by my foot doc for the pain in my feet.
Mine consists of Lidocaine Gabapentin Pentox, Clon, and Amit.
I was to put it on 3x/day wherever the pain was on my feet.
After a week I broke out in a measles type rash on my feet, and had to stop using the cream.
I paid $84 for it, and it wasn’t covered by my insurance either.
I also had a compounded cream ordered by my foot doc for the pain in my feet.
Mine consists of Lidocaine Gabapentin Pentox, Clon, and Amit.
I was to put it on 3x/day wherever the pain was on my feet.
After a week I broke out in a measles type rash on my feet, and had to stop using the cream.
I paid $84 for it, and it wasn’t covered by my insurance either.
It’s always interesting to me how many people think that small-fiber neuropathy is only the extremities because that’s the only kind that they’re aware of. Ugh.
Hi. I'm on a compounded topical lotion for my foot and hip pain due to SFN. It helps for my feet. It's a combination of amitriptyline, ketamine and lidocaine. It works great for me at night. I put it on my feet and then put on socks and my pain subsides so I can sleep better. Unfortunately it's expensive and my insurance does not cover it. I pay $108 for a small amount in a pump container. The container is probably 1/2 the size of a voltarin tube.
So far I'm doing well. It's only helping in my feet but it's still some relief. I'm sorry it caused you to develop a rash that makes it worse and I don't wish this pain on anyone.
So far I'm doing well. It's only helping in my feet but it's still some relief. I'm sorry it caused you to develop a rash that makes it worse and I don't wish this pain on anyone.
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Thank you so much. I think I just deleted my comment. My hands are swollen. Would do appreciate hearing more and learning how to cope with these challenges. I don’t have another neurologist appointment until next week. Thank you again!
Hi, julbpat. Possibly I should not have used the word "pain." When I'm walking, I'll sometimes feel "discomfort," which may be due to a number of causes: (1) not the best-fitting shoes, (2) failure on my part to trim my toenails, pumice the rough patches, etc., or (3) a bunched-up sock. I believe my orthotics are well-fitted to my feet. But that's about it: "discomfort" (sometimes) when I'm walking, but not what I would call "pain." Most telling, in my mind, when I consider my PN, is having no foot pain when I'm at rest, either barefoot around the hose (as now) or when sleeping. That's why my podiatrist and I both feel that my periodic foot "ouches" are mundane and not related to my PN. Have you made any progress toward getting relief? –Ray
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1 ReactionDiscomfort is way better than pain! When my neuropathy is misbehaving, my feet, especially toes, burn. It feels like they are submerged in ice water. Freezing combined with burning. Fortunately I rarely experience that anymore on Tegretol, but it’s really hard to sit and relax, or sleep, when your toes are burning! Glad to hear yours is just normal foot aches.
The bunched up sock feeling is familiar with length dependent small fiber neuropathy. My family is used to my stopping and removing a shoe to rearrange a sock (that is not bunched up), or shake out a tiny rock or grain of sand. I wear sandals in the yard, and no grass or leaves can be between my feet and the shoe! Lots of stopping and rearranging!
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1 ReactionWhatever helps! I suppose it doesn't matter whether a person's foot discomfort (and now I'll use discomfort rather than pain) is PN-related or not – if you've learned techniques that provide some measure of relief, that's what really matters. Here's to a good – minimal foot discomfort – day! –Ray
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1 ReactionI also had a compounded cream ordered by my foot doc for the pain in my feet.
Mine consists of Lidocaine Gabapentin Pentox, Clon, and Amit.
I was to put it on 3x/day wherever the pain was on my feet.
After a week I broke out in a measles type rash on my feet, and had to stop using the cream.
I paid $84 for it, and it wasn’t covered by my insurance either.
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Helpful -
Hug
1 ReactionI’m afraid to try the tube he ordered for me. I’m not on many drugs for that reason.
It’s always interesting to me how many people think that small-fiber neuropathy is only the extremities because that’s the only kind that they’re aware of. Ugh.
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2 ReactionsI too had a compound med done for my feet but I broke out with a measles type rash after a few days using it.
My foot doc told me to discontinue it.
So far I'm doing well. It's only helping in my feet but it's still some relief. I'm sorry it caused you to develop a rash that makes it worse and I don't wish this pain on anyone.
Glad to hear it!