1. < Neuropathy

Eliminating Foods for Neuropathy pain

Posted by avmcbellar @avmcbellar, Jul 20, 2019

I have tried doing without certain foods and drinks containing caffeine and have discovered it helps me to lower my neuropathy pain to a level that is tolerable. It is not easy to eliminate chocolate, tea, and coffee from my diet.

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

lioness | @lioness | Feb 22, 2020
In reply to @catro "I have had the same results on a keto diet. When I stay away from alcohol,..." + (show)
@catro

I have had the same results on a keto diet. When I stay away from alcohol, sugar, bread and any other high glycemic carbohydrates and stick mostly with good fats and proteins my PN is more manageable. I also try to avoid glutens. I recently had a bad experience I want to share and see if anyone else has had the same experience. Several weeks ago I bought some “gluten free” chips made with cassava and ate half a bag. Later that night I woke up with much worse burning in my feet and legs than I usually have at night. I finally had to get up. It took a couple of days to calm down. I learned on line that the cassava root contains a deadly toxin that can be eliminated by proper washing and preparation. It is widely used in Africa and Latin America. I suspect that in processing not all of the toxins are removed, just enough to be safe to eat. A couple of nights ago my wife bought some Bobs Mill “gluten free” flour and made really good banana bread muffins. I ate three muffins that evening and by 2:00 am I was awake with the same level of pain as I had experienced before after eating cassava chips. I checked the label and found the flour contained tapioca which is made from cassava. I also learned on line that people who regularly eat cassava can develop a severe form of PN that has a correlation to low levels of Thiamine (Vit B-1). My plan is to be careful to check labels to avoid cassava and supplement with B-1.

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@catro That is interesting about the cassava and tapioca . I have use Bob Mills before not recently Thanks for sharing. This is what our group is all about also sharing info we found out about a disease and food products.

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Robin | @birdierobin | Feb 22, 2020
In reply to @catro "I have had the same results on a keto diet. When I stay away from alcohol,..." + (show)
@catro

I have had the same results on a keto diet. When I stay away from alcohol, sugar, bread and any other high glycemic carbohydrates and stick mostly with good fats and proteins my PN is more manageable. I also try to avoid glutens. I recently had a bad experience I want to share and see if anyone else has had the same experience. Several weeks ago I bought some “gluten free” chips made with cassava and ate half a bag. Later that night I woke up with much worse burning in my feet and legs than I usually have at night. I finally had to get up. It took a couple of days to calm down. I learned on line that the cassava root contains a deadly toxin that can be eliminated by proper washing and preparation. It is widely used in Africa and Latin America. I suspect that in processing not all of the toxins are removed, just enough to be safe to eat. A couple of nights ago my wife bought some Bobs Mill “gluten free” flour and made really good banana bread muffins. I ate three muffins that evening and by 2:00 am I was awake with the same level of pain as I had experienced before after eating cassava chips. I checked the label and found the flour contained tapioca which is made from cassava. I also learned on line that people who regularly eat cassava can develop a severe form of PN that has a correlation to low levels of Thiamine (Vit B-1). My plan is to be careful to check labels to avoid cassava and supplement with B-1.

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Unbelievable reaction!!!!

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1 reply
catro | @catro | Feb 23, 2020
In reply to @jager5210 "That's been my experience Peggy. The waxing and waning is something my doctors can't explain which..." + (show)
@jager5210

That's been my experience Peggy. The waxing and waning is something my doctors can't explain which means they don't know. I can't believe they told you your nervous system is dying when they don't know why. How depressing is that? I wonder if any other doctors has said this to their patients...and if it is true. So what happens when it's dead? Did they give you an end of the road scenario? You should ask if they've ever treated anyone who's died from SFN. From what I've read, people don't die from SFN.

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If my nerves are “dying” I don’t understand why I can go from burning pain in my feet and legs that wakes me up at night to feeling normal with no pain or tingling for hours during the day. Does anyone have an answer for why pain from PN comes on after I have gone to bed?

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3 replies
Jane | @darlingtondoll | Feb 23, 2020
In reply to @catro "If my nerves are “dying” I don’t understand why I can go from burning pain in..." + (show)
@catro

If my nerves are “dying” I don’t understand why I can go from burning pain in my feet and legs that wakes me up at night to feeling normal with no pain or tingling for hours during the day. Does anyone have an answer for why pain from PN comes on after I have gone to bed?

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Same for me. They hurt when I go to bed and the horrible pain wakes me up at midnight. They still hurt at six AM but the pain subsides after I get up and my mornings are bearable. The pain gets worse later in the day.

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Mentor
Rachel, Volunteer Mentor | @rwinney | Feb 23, 2020
In reply to @catro "If my nerves are “dying” I don’t understand why I can go from burning pain in..." + (show)
@catro

If my nerves are “dying” I don’t understand why I can go from burning pain in my feet and legs that wakes me up at night to feeling normal with no pain or tingling for hours during the day. Does anyone have an answer for why pain from PN comes on after I have gone to bed?

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Ditto! I now can sleep through the night, mostly, but after a few years I pretty much have constant dysfunction. Still sometimes I can walk with a little more ease and other times, I can not. It boggles the mind. Makes ya feel crazy at times, like it's messing with your mind, right ?! But, we are all in the same boat and definitely are not crazy. Keep persevering. 💪🏼
Rachel

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helennicola | @helennicola | Feb 23, 2020
In reply to @catro "If my nerves are “dying” I don’t understand why I can go from burning pain in..." + (show)
@catro

If my nerves are “dying” I don’t understand why I can go from burning pain in my feet and legs that wakes me up at night to feeling normal with no pain or tingling for hours during the day. Does anyone have an answer for why pain from PN comes on after I have gone to bed?

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Me too, my thinking is that it has to do with circulation, but my neuro disagrees; she thinks it is because at night when at rest and inactive our minds and bodies are more aware of our pain. I have noticed other aches and pains show up at night while sleeping also.

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1 reply
Jane | @darlingtondoll | Feb 23, 2020
In reply to @helennicola "Me too, my thinking is that it has to do with circulation, but my neuro disagrees;..." + (show)
@helennicola

Me too, my thinking is that it has to do with circulation, but my neuro disagrees; she thinks it is because at night when at rest and inactive our minds and bodies are more aware of our pain. I have noticed other aches and pains show up at night while sleeping also.

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I’m more active in the morning and maybe that helps with the pain. Or maybe I’m active because I have less pain??? I’m paralyzed, so it has nothing to do with the fact that I’m not using my legs, but I am transferring a lot between the shower, the bathroom and a chair at breakfast. I get involved in the preparation of our noontime meal which is our main meal of the day. Sometimes that may take two hours. Today it will be shrimp à la Grecque. By the time we finish the meal at noon, I need to lie down an elevate my legs because of fluid accumulation and that’s when they start to hurt. But when we go out again at 4 PM, they hurt even more. So it’s not just inactivity that makes them hurt. Last night we went out to dinner with friends, and the pain was so intense, that I was wincing with pain until we got home.

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1 reply
Mentor
Rachel, Volunteer Mentor | @rwinney | Feb 23, 2020
In reply to @darlingtondoll "I’m more active in the morning and maybe that helps with the pain. Or maybe I’m..." + (show)
@darlingtondoll

I’m more active in the morning and maybe that helps with the pain. Or maybe I’m active because I have less pain??? I’m paralyzed, so it has nothing to do with the fact that I’m not using my legs, but I am transferring a lot between the shower, the bathroom and a chair at breakfast. I get involved in the preparation of our noontime meal which is our main meal of the day. Sometimes that may take two hours. Today it will be shrimp à la Grecque. By the time we finish the meal at noon, I need to lie down an elevate my legs because of fluid accumulation and that’s when they start to hurt. But when we go out again at 4 PM, they hurt even more. So it’s not just inactivity that makes them hurt. Last night we went out to dinner with friends, and the pain was so intense, that I was wincing with pain until we got home.

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@darlingtondoll Sighhhh...its when life becomes a chess match. I hear your struggles and give you so much credit. My muscles are weakening more and more. My perseverance leaves me exhausted and in a great deal of pain. I get it. When you push to have some normalcy in life then you pay dearly. I continue to try and find a healthy balance. I pushed yesterday (as I try everyday) and got my taxes done and wanted to have lunch after with my husband. It was a disaster for me and sucked the air out of him seeing me suffer. I wonder why I freakin bother. I'm battling migraines and the neuropathy throughout my head, neck and shoulders is beastly these days. So, lifting my arms to eat a meal is very difficult. Holding up my head is difficult. Using my hands is difficult.

Days when my eyes (dry eye, migraine, photophobia) feel like they bleed bc I push so much to look at phone, hands full of neuropathy so holding phone is difficult. I use voice to text alot or just stubbornly keep pushing and hurting myself more. My legs barely work most times and I often think of you, when I'm complaining in my head, and say knock it off to myself! I'm going to stop here as my list continues but nobody needs to hear more boo hooing.

Thanks for sharing today
Rachel

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1 reply
Jane | @darlingtondoll | Feb 23, 2020
In reply to @rwinney "@darlingtondoll Sighhhh...its when life becomes a chess match. I hear your struggles and give you so..." + (show)
@rwinney

@darlingtondoll Sighhhh...its when life becomes a chess match. I hear your struggles and give you so much credit. My muscles are weakening more and more. My perseverance leaves me exhausted and in a great deal of pain. I get it. When you push to have some normalcy in life then you pay dearly. I continue to try and find a healthy balance. I pushed yesterday (as I try everyday) and got my taxes done and wanted to have lunch after with my husband. It was a disaster for me and sucked the air out of him seeing me suffer. I wonder why I freakin bother. I'm battling migraines and the neuropathy throughout my head, neck and shoulders is beastly these days. So, lifting my arms to eat a meal is very difficult. Holding up my head is difficult. Using my hands is difficult.

Days when my eyes (dry eye, migraine, photophobia) feel like they bleed bc I push so much to look at phone, hands full of neuropathy so holding phone is difficult. I use voice to text alot or just stubbornly keep pushing and hurting myself more. My legs barely work most times and I often think of you, when I'm complaining in my head, and say knock it off to myself! I'm going to stop here as my list continues but nobody needs to hear more boo hooing.

Thanks for sharing today
Rachel

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I use my iPad because I can make it stand up and I don’t have to hold it. The best position for me is to lie on my side and put the iPad on an end table at eye level. My husband uses his smart phone a lot and I notice that his head and neck are in a forward position, not a more natural straight position like when you are standing up and looking straight ahead. He has been having neck and shoulder pain and I think that it is from looking at his phone for hours on end.

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1 reply
lorirenee1 | @lorirenee1 | Feb 23, 2020
In reply to @birdierobin "Unbelievable reaction!!!!" + (show)
@birdierobin

Unbelievable reaction!!!!

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@catro Years ago, before I even had neuropathy, I ate cassava chips, and they were yummy. However, I got such a blasting headache afterwards that I have never eaten them again. At the time I ate them, I sensed I was having an extreme reaction to them. Just never ate them again. Horrible! Lori R.

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