Living with Neuropathy - Welcome to the group

@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.

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.

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!

@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

@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

@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

@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

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!

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

@jakedduck1 I don’t like many wicked gadgets either. I have done away with many and kept the ones I use the most that makes cooking easier on me. A Bullet is quick and easy to whip up nutritious smoothies for yourself. I agree certain foods should be grouped together for better nutrient absorption. Vitamin C does help you to absorb iron. Milk made a huge impact with your iron levels. I was never a big fan of dairy milk or cheese. As a kid I drank or ate dairy foods to please my parents. Just be careful with the carb count in foods. Don’t want you to become a diabetic. After all cookies will not be the same without real sugar and wheat flour for you to enjoy. Toni