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?

@takjack

Ted. My wife, Cheryl, has neuropathy. It is a result of POEMS Syndrome. She was misdiagnosed in 2006, CIDP. Diagnosed correctly in 2009. She is in pain most days. Always looking for something new.

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takjack, Poems Syndrome seems to have a thiamine deficiency component. Thiamine requires magnesium to become bioactive. Fat soluble thiamine such as Benfotiamine passes through the brain/blood barrier more efficiently than water soluble forms. Please review these links:
https://pubmed.ncbi.nlm.nih.gov/22504253/
https://www.jstage.jst.go.jp/article/internalmedicine1992/34/7/34_7_674/_pdf
https://nootropicsexpert.com/vitamin-b1-thiamine/
https://www.krispin.com/magnes.html

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@sevenwoods

Have chronic coat hanger pain (among others). Nothing seems to help.

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sevenwoods, chronic coat hanger pain is a type of dysautonomia that may result from a thiamine deficiency.. Thiamine is intimantly involved with the autonomic system and the vagus nerve. Thiamine requires magnesium to become bioactive. Please use these links as a starting point
http://www.hormonesmatter.com/thiamine-deficiency-causes-problems/
https://www.eonutrition.co.uk/post/thiamine-deficiency-a-major-cause-of-sibo
https://nootropicsexpert.com/vitamin-b1-thiamine/
https://www.krispin.com/magnes.html

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@takjack

Ted. My wife, Cheryl, has neuropathy. It is a result of POEMS Syndrome. She was misdiagnosed in 2006, CIDP. Diagnosed correctly in 2009. She is in pain most days. Always looking for something new.

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@takjack
Ted, I am sorry that your wife has what sounds like a terribly debilitating illness. Just curious, what sorts of things has Cheryl done and is she doing now to deal with or cope with her neuropathic pain? Also, does she have severe fatigue, and has that progressed? Just looking to compare notes. The pain and fatigue experienced by my wife, who got PN in 2014 from chemo, have progressed dramatically in the last 2 years. Best, Hank

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@sallymagint

Thank you Colleen and John, I’m hoping I can learn as much as possible about Neuropathy and how others are living with and managing their symptoms effectively.
From my point of view the care and treatment provided by my medical team is likely to have more positive outcomes if have a positive approach and try to help myself as much as I can -I guess it’s a team approach and I’m a vital player. It’s not easy, in fact it’s damn hard a lot of the time and some days I wonder how I’m going to get through it but I don’t have any other option.
I have a numbee of medical conditions which leave me with a fair amount of neuropathy. I have altered sensations in most parts of my body affecting my sensitivity to temperature, pain, touch, taste, smell. My legs, arms and extremities have significant weakness and a degree of paralysis which may or may not be permanent. I’m in the process of undergoing treatment with neurosurgery planned in the not to distant future. It’s hopeful surgery will reduce the risk of further permanent damage and then the focus will be on retraining/repairing the brain. There’s no guarantees and it’s still a long road to travel but I’m crossing my fingers I can reverse some of the damage.
Thank you so much for giving me the opportunity to talk about my situation. Although I haven’t delved into it too much due to the complexity, it’s helpful to chat about the neuropathy part of it.
I live in Australia and knowledge/experience amongst the medical profession about my conditions is limited. It has made it very tough and I’ve been confronted with a fair amount of ignorance. It is soul destroying when you know there is something wrong but you’re made to feel it’s in your head. But I’m not giving up, I can’t give up and through perseverance I’ve found some amazing specialists who are familiar and experienced and are hopeful they can help me. And I want to raise as much awareness as I can. Awareness is power and power makes change. If less people experience the degree of emotional trauma like myself and others have faced simply by increasing education and knowledge, it can only be a win for all involved

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Hi Sally, I am new to this site and just learning to navigate it. Whereabouts in Australia are you? I am on the Gold Coast. I would be eager to have any information you can share. Neuropathy has destroyed my life and losing my independence is confronting. Look forward to hearing from you. Patricia.

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@jervisp

Hi Sally, I am new to this site and just learning to navigate it. Whereabouts in Australia are you? I am on the Gold Coast. I would be eager to have any information you can share. Neuropathy has destroyed my life and losing my independence is confronting. Look forward to hearing from you. Patricia.

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Hello Patricia @jervisp, Welcome to Connect. There are several discussions you may want to read and learn what other members have shared, including a discussion on neuropathy and brain neuroplasticity started by Barry @user_che214927 who is also from Australia.

– Neuropathy and Brain Neuroplasticity that you may want to read here: https://connect.mayoclinic.org/discussion/barry-sheales-australia/
– Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/
– Peripheral Neuropathy – Stretching and Exercise: https://connect.mayoclinic.org/discussion/peripheral-neuropathy-stretching-and-exercise/

Patricia are you able to share your biggest challenge or fear of losing your independence?

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@jervisp

Hi Sally, I am new to this site and just learning to navigate it. Whereabouts in Australia are you? I am on the Gold Coast. I would be eager to have any information you can share. Neuropathy has destroyed my life and losing my independence is confronting. Look forward to hearing from you. Patricia.

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Hi Sally, let me try and undestroy your life, as I am currently achieving.

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Hey Barry haven't seen you in forever! Hi @jervisp (Sally), I am Sunnyflower. Barry, after you undestroy Sally's life can I be next in line? Warmest wishes to both of you. Sunnyflower 🙏😊

Liked by Hank

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@sunnyflower

Hey Barry haven't seen you in forever! Hi @jervisp (Sally), I am Sunnyflower. Barry, after you undestroy Sally's life can I be next in line? Warmest wishes to both of you. Sunnyflower 🙏😊

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@sunnyflower
Hi Sunny, haven't seen you either! Also, I think Barry is going to be busy. I've noticed there are a lot of lives that need "undestroying" lately. Nice to see your sunny face, Hank 🌹🌹😍

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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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Sounds like me, always worse when I get off my feet and want to watch TV or go to sleep. From all my research it is typical, unfortunately

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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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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

Liked by sunnyflower

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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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