SFN in feet

Posted by jchet @jchet, Jan 8, 2023

In early evening both my feet start to swell and very warm sensation develops in my feet. The warmth generates so much heat that I rarely have more than a sheet and light throw over my feet at night…..and I live in N.Y. Where winter nights get pretty cold. More tolerable in the daytime. Anyone out there in the same boat?

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@johnbishop

Same here... I try to drink 64 oz of water a day but don't always make it. A few weeks ago a friend recommended these small packets of lemon crystals that just add flavor and no sugar. I've bought both the lemon and lime, and now think I might try the orange.
https://www.amazon.com/gp/product/B003YP3MUS/

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John, tried 64 oz but up and down thru the night so I backed it down to 50 oz and works better. Just ordered the lemon via Amazon - thanks for the tip!

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@njed

lecowing - I have done the same with good results after 30 minutes. At times, watching TV at night, I'll get the feet up which helps. I am not sure but I'm thinking there has to be a connection between PN and swelling of legs because my swelling is exactly where I have PN... below he knee. ED

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Exactly, the same as me. It was actually my dermatologist that suggested it. His father had the same problem with swollen legs.

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My neurologist told me it is idiopathic and that about 12% of men over age 60 get it. He said that for unknown reasons soaking feet in epsom salts relieves symptoms, I tried it, and didn't work for me. Another doctor told me that there is a long list of possible causes, which is why that becomes an easy answer for med school students. After further discussions, I now believe that saying "idiopathic" is an easy way out of ordering extensive testing to rule out numerous possible causes. The good news is that small fiber neuropathy means some discomfort but not major disability, Although it is said to be progressive, I handle it like my other medical "gifts" ... with proper diet, the right exercise, good sleep, and minimizing stress. A positive mental attitude including a good dose of humor can be great medicine. I believe it is best to define ourselves by who we are as opposed to the ailments we have. Easier said than done, but it has worked for me.

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@lagrange5

My neurologist told me it is idiopathic and that about 12% of men over age 60 get it. He said that for unknown reasons soaking feet in epsom salts relieves symptoms, I tried it, and didn't work for me. Another doctor told me that there is a long list of possible causes, which is why that becomes an easy answer for med school students. After further discussions, I now believe that saying "idiopathic" is an easy way out of ordering extensive testing to rule out numerous possible causes. The good news is that small fiber neuropathy means some discomfort but not major disability, Although it is said to be progressive, I handle it like my other medical "gifts" ... with proper diet, the right exercise, good sleep, and minimizing stress. A positive mental attitude including a good dose of humor can be great medicine. I believe it is best to define ourselves by who we are as opposed to the ailments we have. Easier said than done, but it has worked for me.

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Oh it's progressive and is becoming a major disability for me in 5 years. The doctors have no solutions!

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@davelobb12

Oh it's progressive and is becoming a major disability for me in 5 years. The doctors have no solutions!

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When I asked my neurologist about treatments, he said the best treatment was to treat the underlying condition that caused the small fiber neuropathy. Of course, he didn't know what that was. He recommended Vitamin B and referred me to my PCP. Before I left, I asked him to precisely detail what's coming, which he did. When I saw my great long-term PCP, he let me know that not all Vitamin B's are created equal, that the wrong one can worsen things, and that I should take Vitamin B12 only. I now take 1000 mg at breakfast along with my Vitamin D3 (chronic kidney disease, stage 3) as well as cheery juice concentrate and alopurinol (gout). I also take other prescriptions at other times for other things. My nonmedical guess is that I got SFN from a prescribed med that adversely interacted with another prescribed med, which were then changed.

I am proactive with my health. I have consulted with "Dr. Google". I travel to see specialists, including Mayo Rochester. I seek out specialists at teaching hospitals, stick with the doctors that help, and move on from those that don't, which is why I keep returning to Mayo. When medicine doesn't help, I adjust lifestyle and diet accordingly. I know "gravity doesn't care", so my response is to take what I get and then do the best I can with what I've got.

@davelobb12 I hope this helps, and I do and wish you well.

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I have mild neuropathy in my feet. My neurologist put me on 600 mgrams of alpha lipoic acid every morning. This seems to help alot. I also use the salon pas. One on top of my foot and a second on the bottom with a good pair of socks. This keeps the pain under control..

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@bfort

I have mild neuropathy in my feet. My neurologist put me on 600 mgrams of alpha lipoic acid every morning. This seems to help alot. I also use the salon pas. One on top of my foot and a second on the bottom with a good pair of socks. This keeps the pain under control..

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Are your "good pair of socks" thin, thick, compression...?

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@lagrange5

My neurologist told me it is idiopathic and that about 12% of men over age 60 get it. He said that for unknown reasons soaking feet in epsom salts relieves symptoms, I tried it, and didn't work for me. Another doctor told me that there is a long list of possible causes, which is why that becomes an easy answer for med school students. After further discussions, I now believe that saying "idiopathic" is an easy way out of ordering extensive testing to rule out numerous possible causes. The good news is that small fiber neuropathy means some discomfort but not major disability, Although it is said to be progressive, I handle it like my other medical "gifts" ... with proper diet, the right exercise, good sleep, and minimizing stress. A positive mental attitude including a good dose of humor can be great medicine. I believe it is best to define ourselves by who we are as opposed to the ailments we have. Easier said than done, but it has worked for me.

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Hi @lagrange5,

The tests have to stop sometime, but unless you’ve had a standard set recommended by the Mayo Clinic and the American association of family physicians, you should try to get them. Assuming good insurance, I would switch MDs if necessary. You can find the list in the attached paper (if it goes through). A slightly different list is recommended for SFN. It is described in a similar paper published by the Cleveland Clinic.

FWIW, a paper out of Columbia University Hospital reported that 1/3 of patients referred to them as “Idiopathic” actually had assignable causes.

Best of luck,
https://www.mayoclinicproceedings.org/article/S0025-6196(15)00378-X/pdf

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@lagrange5

Are your "good pair of socks" thin, thick, compression...?

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@lagrange5 i have found that thick socks (the kind used for hiking) provide some relief from walking-related discomfort. Best.

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@lagrange5

When I asked my neurologist about treatments, he said the best treatment was to treat the underlying condition that caused the small fiber neuropathy. Of course, he didn't know what that was. He recommended Vitamin B and referred me to my PCP. Before I left, I asked him to precisely detail what's coming, which he did. When I saw my great long-term PCP, he let me know that not all Vitamin B's are created equal, that the wrong one can worsen things, and that I should take Vitamin B12 only. I now take 1000 mg at breakfast along with my Vitamin D3 (chronic kidney disease, stage 3) as well as cheery juice concentrate and alopurinol (gout). I also take other prescriptions at other times for other things. My nonmedical guess is that I got SFN from a prescribed med that adversely interacted with another prescribed med, which were then changed.

I am proactive with my health. I have consulted with "Dr. Google". I travel to see specialists, including Mayo Rochester. I seek out specialists at teaching hospitals, stick with the doctors that help, and move on from those that don't, which is why I keep returning to Mayo. When medicine doesn't help, I adjust lifestyle and diet accordingly. I know "gravity doesn't care", so my response is to take what I get and then do the best I can with what I've got.

@davelobb12 I hope this helps, and I do and wish you well.

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I have tried it all. They honestly have no idea. THC helps me sleep at night. My feet are now in a lot of pain and the best relief I can get is from Tramidol but doctors are now reluctant to prescribe it since it now falls into the Opioid family. Its very discouraging!

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