Living with Neuropathy - Welcome to the group

Welcome to the Neuropathy group.
This is a welcoming, safe place where you can meet other people who are dealing with neuropathy. Let’s learn from each other and share stories about living well with neuropathy, coping with the challenges and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by volunteer patient Mentor John (@johnbishop) and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself? What concerns would you like to talk about?

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

@rmoran1966

i have mild Neuropathy in my legs and feet. i am not diabetic and my doctor does not have a cause for it. question: the bottoms of my feet are ok during the day but when i go to bed there get very hot and cause me not to sleep well. any idea why this happens at night more than daytime.

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Hello @rmoran1966, I would like to add my welcome to Connect along with @wisfloj and others. There are also other causes for burning feet other than neuropathy. Here's some information you might find helpful.
- Hot feet: Causes and treatments - Medical News Today: https://www.medicalnewstoday.com/articles/319911

There is also another discussion on the topic here:
- Erythromelalgia: https://connect.mayoclinic.org/discussion/erythromelalgia/

The second post in the above discussion by @kanaazpereira mentions the Erythromelalgia Clinic in Minnesota where specialists work together to offer you specialized skin testing, an accurate diagnose and a treatment plan that meets your needs - https://connect.mayoclinic.org/discussion/erythromelalgia/?pg=1#comment-122070.

Has your doctor suggested any treatment or therapy to help with your feet getting hot only at night?

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@rmoran1966

i have mild Neuropathy in my legs and feet. i am not diabetic and my doctor does not have a cause for it. question: the bottoms of my feet are ok during the day but when i go to bed there get very hot and cause me not to sleep well. any idea why this happens at night more than daytime.

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moran1996, Yes, I understand this feeling. My feet are usually very cold in the day, but when I go to sleep, my soles are red and burning. I will stick my feet outside the covers. I just thought it was weird me. A neurologist at Mayo prescribed a compounded mixture, but it didn't work so I just live with it. @joybringer1

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I have the same symptoms it seems to go up and down with the amount of sugar and carbohydrate intake if I stay away from the carbohydrates I get a lot less red and that burning sensation. Another thing that sets it off is the cold I live in northern Michigan so if I get out and mess around in my toes and the pads of my feet get cold they will act up the rest of the day. I take 600 mL mg of Benfetiamine in the morning that helps as much as anything I've ever tried you may want to give that a go. I hope this helps God bless

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@captphilly777

I have the same symptoms it seems to go up and down with the amount of sugar and carbohydrate intake if I stay away from the carbohydrates I get a lot less red and that burning sensation. Another thing that sets it off is the cold I live in northern Michigan so if I get out and mess around in my toes and the pads of my feet get cold they will act up the rest of the day. I take 600 mL mg of Benfetiamine in the morning that helps as much as anything I've ever tried you may want to give that a go. I hope this helps God bless

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You know, my wife takes somewhere between 30 and 32 supplements per day. Each one was researched before starting them and a lot of thought went into whether to take them, initially. Benfotiamine is a good example. Peripheral neuropathy started for her in Feb. 2014. Somewhere around late 2014 or perhaps early 2015 she started on Benfotiamine from Life Extension 250 mg twice a day. I don't remember her ever being aware of it helping her, but the literature was so clearly in favor of it's benefits for neuropathy sufferers it just seemed important to include in her regimen. After a couple years she decided to drop it out (to cut costs probably) and so for some period, perhaps a year or more, she did not take it, and she noticed no change after stopping it. Then one day I read some article somewhere that really extolled the benefits of Benfotiamine for neuropathy. I got super charged up again for her to take it and I convinced her to start it again. Since then she has taken it every day.

I am wondering just how to evaluate a supplement which is almost universally extolled, and where many testimonials have been given by others as to their effectiveness, and so many reasons are given as to their usefulness in helping, but which no discernible benefit can be noticed for oneself. My wife and I both want for her to have everything and anything that is beneficial to her. Perhaps Benfotiamine does do something positive for her that she can not discern. But the stuff is not cheap, and I estimated once that we spend around at least $800/month (approx. $10,000/year) on her supplements alone. Many of them seem well worth the time, trouble and expense. Some, like Benfotiamine do not provide any indication one way or the other, at least not overtly. I am wondering whether she should continue taking it anyway? Can something be very good for you but be so subtle that you can't even notice it? (She takes a number of things I would put in the same category as Benfotiamine, i.e. no idea whether they help).

Any ideas or input welcome, this is a real quandary! Thanks, Hank

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@jesfactsmon

You know, my wife takes somewhere between 30 and 32 supplements per day. Each one was researched before starting them and a lot of thought went into whether to take them, initially. Benfotiamine is a good example. Peripheral neuropathy started for her in Feb. 2014. Somewhere around late 2014 or perhaps early 2015 she started on Benfotiamine from Life Extension 250 mg twice a day. I don't remember her ever being aware of it helping her, but the literature was so clearly in favor of it's benefits for neuropathy sufferers it just seemed important to include in her regimen. After a couple years she decided to drop it out (to cut costs probably) and so for some period, perhaps a year or more, she did not take it, and she noticed no change after stopping it. Then one day I read some article somewhere that really extolled the benefits of Benfotiamine for neuropathy. I got super charged up again for her to take it and I convinced her to start it again. Since then she has taken it every day.

I am wondering just how to evaluate a supplement which is almost universally extolled, and where many testimonials have been given by others as to their effectiveness, and so many reasons are given as to their usefulness in helping, but which no discernible benefit can be noticed for oneself. My wife and I both want for her to have everything and anything that is beneficial to her. Perhaps Benfotiamine does do something positive for her that she can not discern. But the stuff is not cheap, and I estimated once that we spend around at least $800/month (approx. $10,000/year) on her supplements alone. Many of them seem well worth the time, trouble and expense. Some, like Benfotiamine do not provide any indication one way or the other, at least not overtly. I am wondering whether she should continue taking it anyway? Can something be very good for you but be so subtle that you can't even notice it? (She takes a number of things I would put in the same category as Benfotiamine, i.e. no idea whether they help).

Any ideas or input welcome, this is a real quandary! Thanks, Hank

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Hi Hank and Linda @jesfactsmon I also was curious about supplements and took them for the benefits as other members have stated but I was often disappointed. Funny, I have learned through you whether to take supplements or not and I thank you for the awakening. Some of the supplements offered no help as described by others. So now every time I learn of one I make sure to look up the food sources. The foods often listed are foods I eat; therefore, I don’t feel I have a deficiency for the supplement to be of help to me. I keep in my mind that sometimes too much may not be good for the body. I remember equilibrium. A supplement not helping may be a good thing too meaning your body is not deficient. Best to you both. Toni

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@jesfactsmon

You know, my wife takes somewhere between 30 and 32 supplements per day. Each one was researched before starting them and a lot of thought went into whether to take them, initially. Benfotiamine is a good example. Peripheral neuropathy started for her in Feb. 2014. Somewhere around late 2014 or perhaps early 2015 she started on Benfotiamine from Life Extension 250 mg twice a day. I don't remember her ever being aware of it helping her, but the literature was so clearly in favor of it's benefits for neuropathy sufferers it just seemed important to include in her regimen. After a couple years she decided to drop it out (to cut costs probably) and so for some period, perhaps a year or more, she did not take it, and she noticed no change after stopping it. Then one day I read some article somewhere that really extolled the benefits of Benfotiamine for neuropathy. I got super charged up again for her to take it and I convinced her to start it again. Since then she has taken it every day.

I am wondering just how to evaluate a supplement which is almost universally extolled, and where many testimonials have been given by others as to their effectiveness, and so many reasons are given as to their usefulness in helping, but which no discernible benefit can be noticed for oneself. My wife and I both want for her to have everything and anything that is beneficial to her. Perhaps Benfotiamine does do something positive for her that she can not discern. But the stuff is not cheap, and I estimated once that we spend around at least $800/month (approx. $10,000/year) on her supplements alone. Many of them seem well worth the time, trouble and expense. Some, like Benfotiamine do not provide any indication one way or the other, at least not overtly. I am wondering whether she should continue taking it anyway? Can something be very good for you but be so subtle that you can't even notice it? (She takes a number of things I would put in the same category as Benfotiamine, i.e. no idea whether they help).

Any ideas or input welcome, this is a real quandary! Thanks, Hank

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Hank, regarding Benfotiamine, I guess everyone is different; I have tried 3 different times over the past 3 yrs. to take it and each time I felt that it made my symptoms worse, so now I am off it for good. I have read that sometimes the pain is telling you that something is working but since i also take 2 other amino acids I decided i didn’t need it. Who knows? I take 8 different vitamins, minerals and supplements besides my gabapentin and that seems to be working for me. I think it’s often trial and error and research. I know that diet, exercise and less stress are major factors also. P.S. My husband recently had surgery and tried a CBD/THC tincture which he said made his post surgery pain worse so go figure! Helen

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@jesfactsmon

You know, my wife takes somewhere between 30 and 32 supplements per day. Each one was researched before starting them and a lot of thought went into whether to take them, initially. Benfotiamine is a good example. Peripheral neuropathy started for her in Feb. 2014. Somewhere around late 2014 or perhaps early 2015 she started on Benfotiamine from Life Extension 250 mg twice a day. I don't remember her ever being aware of it helping her, but the literature was so clearly in favor of it's benefits for neuropathy sufferers it just seemed important to include in her regimen. After a couple years she decided to drop it out (to cut costs probably) and so for some period, perhaps a year or more, she did not take it, and she noticed no change after stopping it. Then one day I read some article somewhere that really extolled the benefits of Benfotiamine for neuropathy. I got super charged up again for her to take it and I convinced her to start it again. Since then she has taken it every day.

I am wondering just how to evaluate a supplement which is almost universally extolled, and where many testimonials have been given by others as to their effectiveness, and so many reasons are given as to their usefulness in helping, but which no discernible benefit can be noticed for oneself. My wife and I both want for her to have everything and anything that is beneficial to her. Perhaps Benfotiamine does do something positive for her that she can not discern. But the stuff is not cheap, and I estimated once that we spend around at least $800/month (approx. $10,000/year) on her supplements alone. Many of them seem well worth the time, trouble and expense. Some, like Benfotiamine do not provide any indication one way or the other, at least not overtly. I am wondering whether she should continue taking it anyway? Can something be very good for you but be so subtle that you can't even notice it? (She takes a number of things I would put in the same category as Benfotiamine, i.e. no idea whether they help).

Any ideas or input welcome, this is a real quandary! Thanks, Hank

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@jesfactsmon. Supplements are not regulated by the FDA, so the quality and efficacy are not tested. Have you heard of Consumer Lab? Supposedly they test supplements and reports on the quality and report on the efficacy. There's a membership fee, but if you are paying that much a year, it may pay to try it. I'm not associated with them, this is just a suggestion.

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@ jesfactsmon
Hank, just because a little bits good doesn’t mean a whole lot more is better.
Your wife reminds me of my aunt. She took a bucket load of supplements too and of course I don’t know if all the supplements caused her heart to crumble in the surgeons hand but it makes me wonder.
My doctor told me to get my nutrients through food. The only exception is nutrients my seizure medications effect.
I find it hard to believe it’s the combination of 32 supplements that is helping. Have you two consulted with her doctors regarding the risk benefit of all these substances? If any of these are naturally occurring in the body and/or can be checked by blood tests I would have that done.
Researchers are discovering most supplements are not helpful and a waste of money.
Best of luck,
Jake

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@helennicola

Hank, regarding Benfotiamine, I guess everyone is different; I have tried 3 different times over the past 3 yrs. to take it and each time I felt that it made my symptoms worse, so now I am off it for good. I have read that sometimes the pain is telling you that something is working but since i also take 2 other amino acids I decided i didn’t need it. Who knows? I take 8 different vitamins, minerals and supplements besides my gabapentin and that seems to be working for me. I think it’s often trial and error and research. I know that diet, exercise and less stress are major factors also. P.S. My husband recently had surgery and tried a CBD/THC tincture which he said made his post surgery pain worse so go figure! Helen

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@helennicola Helen, you would think that, since we all have human bodies and quite similar DNA that we would all react more or less the same to different things. How Benfotiamine can make your pain worse, Helen, while Lori @lorirenee1 swears it is doing almost miracles for her neuropathy (and I have heard similar testimonials from others) is perplexing. For Linda, as I said, there is no discernible effect. @mayofeb2020 Yes, thank-you, I have heard about Consumer Lab but have never joined. Maybe I should. @avmcbellar Toni, thanks for your inputs as well. I need to come up with a strategy. @jakedduck1 Leonard, actually, I would say that most of the ones she takes make sense for her and do offer observable benefits. Not all are for neuropathy, many are for other things too. Some boost mitochondria and boost energy, these we both swear by (I take most of those also). Others like vitamin C, A, D3, etc. are just mundane supplements many people take. The main ones she questions (because of no apparent effect) are Benfotiamine, R Lipoic Acid, Omega7, Bioperine (supposed to help absorb other supps), boron, PEA (which she will stop soon). Thanks all, for your feedback! Best, Hank

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Hank: very perplexing! based on our personal experience, but I still think collectively, we know more about our neuropathy than the doctors.(unfortunately) 😏 Helen

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