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.

@avmcbellar

Sunny, you’re welcome. I use a simple blender(Oster). To be able to make just a single portion my kids use The Bullet. A never used a juicer. Besides it being more expensive, it takes all the fiber away and leaves only the juice. The fiber is good to include from foods too. The juice not only contains nutrients but also the sugary stuff. The fiber helps to not digest all the sugar.

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@avmcbellar, Thankyou for all your good advice about making smoothies. I think you've convinced me to buy a blender! I've never been sure what brand to get, so it's very helpful to know that you use an Oster, and just a blender, not a juicer. I'm having so much difficulty with diet right now due to ongoing G.I. and Diabetic issues and my diet has become very restricted. No carbs (severe neuropathy in my legs), difficulty digesting fruit or raw veggies, lactose intolerant, etc. I'm sure many of us have the same issues. May I ask what you use as a liquid with the greens or fruit, or do you need to add a liquid? Thanks for your help!
Warm wishes, Laurie

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@jakedduck1

@sunnyflower
Here are some seizure meds that can cause Neuropathy.

Dilantin/Phenytoin
Phenobarbital
Tegretol/Carbamazepine
Depacote/Valproic acid
Trileptal, Oxtellar XR/Oxcarbazepine
Lamictal/Lamotrigine

I believe that Neurontin/Gabapentin may also contribute to Neuropathy just like some seizure meds have increased seizures in some people.

Take care,
Jake

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@jakedduck1 @sunnyflower i feel very strongly about lamictal/lamotrigine. While on it I first developed a rash, next time blisters started appearing on my neck and the ER doc wat bed as they spread rapidly down my arms and torso. He showed me a pic on his cell
And said it was flesh eating bacteria nothing he could do pumped me full
Of Benadryl and sent me home 8 hours later. Then the seizures started and my psychiatrist still said to stay on my lamictal. After one seizure I had to crawl like a snake to get around my house and laid on the door jamb to let my dog pea. After a week no exaggeration I could finally recite the alphabet and read some words. It took many weeks to learn to read again. I simply lost knowledge of some letters of the alphabet and couldn’t sound out words. I then started flopping on the floor seizures with still having to crawl like a snake that lasted for days. I stopped
The lamictal and have been seizure free for 3 years as of April 2021. My psychiatrist never agreed with me.

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@artist01

@avmcbellar, Thankyou for all your good advice about making smoothies. I think you've convinced me to buy a blender! I've never been sure what brand to get, so it's very helpful to know that you use an Oster, and just a blender, not a juicer. I'm having so much difficulty with diet right now due to ongoing G.I. and Diabetic issues and my diet has become very restricted. No carbs (severe neuropathy in my legs), difficulty digesting fruit or raw veggies, lactose intolerant, etc. I'm sure many of us have the same issues. May I ask what you use as a liquid with the greens or fruit, or do you need to add a liquid? Thanks for your help!
Warm wishes, Laurie

Jump to this post

Hi Laurie. I don’t make smoothies often enough because I like to eat my greens and veggies. My kids make smoothies though. They use The Bullet. Use Amazon to find products and their description. You can even find their ratings by other consumers to help you select the best one for you.
I use my blender for mostly making my own dips like hummus or pseudo tuna salad using tofu. You can even use it in soups. Take a few cups in a blender to cream and them add it back into the soup.
In your smoothies, try using the different plant based milks for lactose intolerance like almond milk. There are so many available in the grocery store today. I would experiment to find the right taste. I found Pinterest to have many recipes. It works for me. I take a recipe to get an idea of the ingredients. I sometimes replace ingredients to my liking or do the math to scale a recipe down.
I also have cut down on my carb consumption significantly 2 years ago. It has decreased the neuropathy pain for me. What specifically do you need to stay away from in fruits and vegetables due to your digestion issues? I am not a diabetic but like to avoid carbs anyways. Are you able to exercise at all to burn carbs? It is hard for me because my mobility is limited with my health issues. I use a portable mini cycling machine and elliptical machine. Both are light weight and I am able to use on a daily basis. I have found 10 minute intervals help a great deal. My total time exercising differs day to day. It ranges between 30 minutes- 80 minutes. Exercising helps me to eliminate the bloating I felt. What a difference it has made. Hope this helps.

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@bustrbrwn22

@jakedduck1 @sunnyflower i feel very strongly about lamictal/lamotrigine. While on it I first developed a rash, next time blisters started appearing on my neck and the ER doc wat bed as they spread rapidly down my arms and torso. He showed me a pic on his cell
And said it was flesh eating bacteria nothing he could do pumped me full
Of Benadryl and sent me home 8 hours later. Then the seizures started and my psychiatrist still said to stay on my lamictal. After one seizure I had to crawl like a snake to get around my house and laid on the door jamb to let my dog pea. After a week no exaggeration I could finally recite the alphabet and read some words. It took many weeks to learn to read again. I simply lost knowledge of some letters of the alphabet and couldn’t sound out words. I then started flopping on the floor seizures with still having to crawl like a snake that lasted for days. I stopped
The lamictal and have been seizure free for 3 years as of April 2021. My psychiatrist never agreed with me.

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Why would a doctor tell you to stay on lamictal with the rash? Were you taking it to control seizures or neuropathy? Sorry, I’m behind the 8 ball here. Help!

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@avmcbellar

Hi Laurie. I don’t make smoothies often enough because I like to eat my greens and veggies. My kids make smoothies though. They use The Bullet. Use Amazon to find products and their description. You can even find their ratings by other consumers to help you select the best one for you.
I use my blender for mostly making my own dips like hummus or pseudo tuna salad using tofu. You can even use it in soups. Take a few cups in a blender to cream and them add it back into the soup.
In your smoothies, try using the different plant based milks for lactose intolerance like almond milk. There are so many available in the grocery store today. I would experiment to find the right taste. I found Pinterest to have many recipes. It works for me. I take a recipe to get an idea of the ingredients. I sometimes replace ingredients to my liking or do the math to scale a recipe down.
I also have cut down on my carb consumption significantly 2 years ago. It has decreased the neuropathy pain for me. What specifically do you need to stay away from in fruits and vegetables due to your digestion issues? I am not a diabetic but like to avoid carbs anyways. Are you able to exercise at all to burn carbs? It is hard for me because my mobility is limited with my health issues. I use a portable mini cycling machine and elliptical machine. Both are light weight and I am able to use on a daily basis. I have found 10 minute intervals help a great deal. My total time exercising differs day to day. It ranges between 30 minutes- 80 minutes. Exercising helps me to eliminate the bloating I felt. What a difference it has made. Hope this helps.

Jump to this post

@avmcbellar Thanks so much for the great info. I live in a seniors' residence with lunch and dinner provided so it's difficult to pick and choose from their weekly menu. They serve a lot of carbs in the form of bread (sandwiches at noon), potatoes, pasta, rice, etc, and raw veggies and fruit at nearly every meal. Also serve cooked vegetables for some of the dinner meals, which I can eat. Although the meals are really good, if one has restrictions, they don't/can't cater to them. I just cut carbs out this week, so am getting hungry! I'm going to ask for extra vegetables for the meals when
they served cooked ones, and see if they can do that. I haven't been able to get many vitamins for months now because I was unable to eat the raw choices on the menus. That's why I think smoothies would be a good idea.
I had a Bullet but gave it away when I moved here. Dang!! Lol. I'll have to buy a new one. I'll check out Pinterest too.
And I use lactose free products already. smile. I'm only walking outdoors for exercise right now, as I'm just rediscovering my improved mobility, but I can reinstate a modified one-on-one exercise program that I had here before the strokes and GCA hit! We've had days of snow so walking has been cancelled for now. It's raining and warmer now so the snow is melting 😍. Thanks so much again. Laurie

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@avmcbellar
I have a Bullet & Oster too. Mine are almost like brand new. I made my Mom a milkshake in the Oster and a friend uses them occasionally.
I don't like all those wicked gadgets in the kitchen.
She uses lots of spinach. I asked her to include some orange juice to help the absorption of the iron in spinach and no dairy. Calcium binds to iron and it is excreted.
My iron increased from 11, 12 13 to well over 15 when I stopped using milk on my cereal and used orange juice instead.
Enjoy your smoothies,
Jake

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@johnbishop
I read that when your pain symptoms decrease or go away as they did in my case and was replaced by numbness that the Neurophy is getting worse and more nerve fibers die. Do you know if that is true?
Did you have all the various pain symptoms at one time?
Take care,
Jake

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@bustrbrwn22

@jakedduck1 @sunnyflower i feel very strongly about lamictal/lamotrigine. While on it I first developed a rash, next time blisters started appearing on my neck and the ER doc wat bed as they spread rapidly down my arms and torso. He showed me a pic on his cell
And said it was flesh eating bacteria nothing he could do pumped me full
Of Benadryl and sent me home 8 hours later. Then the seizures started and my psychiatrist still said to stay on my lamictal. After one seizure I had to crawl like a snake to get around my house and laid on the door jamb to let my dog pea. After a week no exaggeration I could finally recite the alphabet and read some words. It took many weeks to learn to read again. I simply lost knowledge of some letters of the alphabet and couldn’t sound out words. I then started flopping on the floor seizures with still having to crawl like a snake that lasted for days. I stopped
The lamictal and have been seizure free for 3 years as of April 2021. My psychiatrist never agreed with me.

Jump to this post

@bustrbrwn22
Good Morning,
I wonder if you had Stevens Johnson Syndrome a rare side effect of Lactimal and other Anti-convulsants.
if by chance you are of Asian dissent it would be a good idea since you had this reaction to be tested before you’re put on any medication that could cause Steven Johnson syndrome which can be life-threatening.
Jake

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@jakedduck1

@johnbishop
I read that when your pain symptoms decrease or go away as they did in my case and was replaced by numbness that the Neurophy is getting worse and more nerve fibers die. Do you know if that is true?
Did you have all the various pain symptoms at one time?
Take care,
Jake

Jump to this post

Hi Jake @jakedduck1 - I can't say whether it's true or not true but my feeling is that it's not true base a little on my own symptoms for my small fiber peripheral neuropathy. I've never had pain as a symptom and have lived with it going on 30 or so years. It started like most people in the toes. Sometimes feeling a little tingly but mostly numb. Then over the years started progressing into the feet. I never bothered to get it diagnosed when I first noticed it because when I asked that doctor how they diagnose nerve damage he told me about the different nerve tests. My next question was so what if they determine it's nerve damage, what can they do to fix it? After he burst my balloon by telling me nothing since I don't have pain then I just said no need to have it tested. Then in 2016 I just had to know because the numbness was just below the knees which is really when I first joined Connect looking for support and answers. I had the nerve conduction tests and an exam by a Mayo neurologist who diagnosed me with idiopathic small fiber PN. He guessed possibly was due to heredity but really didn't know and again told me no answers for treating numbness.

That's when I started looking into healthier eating after reading how Dr. Terry Wahls helped her Multiple Sclerosis symptoms through diet - https://terrywahls.com/. I followed it for a month or so and was feeling better overall but it didn't do much for my neuropathy symptom of numbness so I started looking at other supplements. The rest of my story is in the Member Neuropathy Journey discussion here https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/?pg=1#comment-394729

After a few months of taking the supplements the numbness appears to have rolled back a little to just above my ankles (subjective on my part) but it hasn't gotten any worse so I'm taking it as a win.

Harvard Health has a good layman's explanation of nerve damage that makes it easy for a non medical person like me to understand - https://www.health.harvard.edu/diseases-and-conditions/when-nerves-get-damaged

Happy Friday!

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@jakedduck1

@bustrbrwn22
Good Morning,
I wonder if you had Stevens Johnson Syndrome a rare side effect of Lactimal and other Anti-convulsants.
if by chance you are of Asian dissent it would be a good idea since you had this reaction to be tested before you’re put on any medication that could cause Steven Johnson syndrome which can be life-threatening.
Jake

Jump to this post

Exactly my thought as well @jakedduck1
It is not something to mess around with and has long term effects depending on how long it went untreated @bustrbrwn22

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