Looking to connect with people who have non-diabetic neuropathy

Here's some info on B6 and neuropathy...

-- B6 section it explains -- too much or too little gives neuropathy:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4199287/
-- NIH - Nutritional Neuropathies:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4199287/
-- Vitamin B6 Toxicity:
http://www.easy-immune-health.com/vitamin-b6-toxicity.html
-- B Vitamins for Neuropathy and Neuropathic Pain:
https://www.omicsonline.org/open-access/b-vitamins-for-neuropathy-and-neuropathic-pain-2376-1318-1000161.php?aid=90896

I struggle with Small Fiber Neuropathy. It was caused by the sudden discontinued prescription. It took two years to diagnose so treatment has been slow and painful. I do take Gabapentin, but it is unwise because of the side effects. Resting or night time I have the worst pain. Do you experience the same thing at night?

Hi @graysea, welcome to Connect. I'm sorry you struggle with SFN. How long have you been taking Gabapentin? Nerve medications, like Gabapentin and Pregabalin (Lyrica) can take quite a while to adjust to. Side effects may become less noticeable over time and you may determine the benefits of relief are worth it. Is your doctor still increasing your dose?

Resting, or at night is a common time to feel increased pain and sensitivity. What distraction do you find during those times? I'm big on word search puzzles. Also, don't underestimate the power of positive self-talk. Do you tell yourself positive mantras?

Thank you so much for replying.
I read positive quotes and stories. I have not heard of mantras. Can you teach me. I do breathing exercises, but my mind wanders. I wish I could exercise while I slept!!! (;
I have taken gabapentin for a year. It is a lifesaver for many. I was initially put on Gabapentin in January of 2020. I had a severe reaction, so I was tapored of of it, I got relief and it was placed on my allergy list. In June of 2021, my neurologist stated he doubted that he would see the same reaction. He represcribed gabapentin. I had the same side effects. Im on 1200 mg. My internist does not feel comfortable taporing prednisone and gabapentin at the same time. She wants me off of gabapentin soon. In another universe this would be slapstick.
Right now I just need all the positive ideas and support. It helps to have hope. It really helps.
My husband is finding a word search app for me!!!

Thank you so much for replying.
I read positive quotes and stories. I have not heard of mantras. Can you teach me. I do breathing exercises, but my mind wanders. I wish I could exercise while I slept!!! (;
I have taken gabapentin for a year. It is a lifesaver for many. I was initially put on Gabapentin in January of 2020. I had a severe reaction, so I was tapored of of it, I got relief and it was placed on my allergy list. In June of 2021, my neurologist stated he doubted that he would see the same reaction. He represcribed gabapentin. I had the same side effects. Im on 1200 mg. My internist does not feel comfortable taporing prednisone and gabapentin at the same time. She wants me off of gabapentin soon. In another universe this would be slapstick.
Right now I just need all the positive ideas and support. It helps to have hope. It really helps.
My husband is finding a word search app for me!!!

Hello all …. Here are some things that help me: I do feet exercises in pool. You can also roll tennis ball from chair and pick up marbles with toes. Google foot exercises for feet and hands. Neuropathy socks help at night. I rub frankincense and myrrh lotion for pain on feet at night, read my Kindle, listen to music and take Tizanidine to take edge off at night.

I am in a month going to try reflexology massage for feet and hands. Hoping it helps. Will let you know.

I am determined not to give up! Talking to this group helps. 😊

Good morning @ graysea. Congratulations on doing breathing exercises! Diaphragmatic "belly breathing" is such a bonus in helping calm your nervous system down. Do you practice breathing exercises throughout the day? I used to do belly breathing only when I was at peak pain, but I've learned that scheduling breathing throughout the day helps it become more routine, natural and effective. It really has helped. I even do it in the car at stop lights.

You mention wishing you could exercise while you sleep. Now that would be interesting. My morning stretches are a lifeline, and my body depends on them. What form of exercise do you do? While you're awake that is? 😄 Do you have an exercise routine?

I'm sorry about your fiasco with Gabapentin. No fun. I hope you get situated soon and find stable relief. Will your doctor try Pregabalin (Lyrica) instead?

Mantras are similar to what you said you read...positive quotes and stories. Here's some info on mantras:

"What is a mantra and how is it used?
Mantras are one way to practice mindfulness because we focus on a word or phrase as a way to calm and center the mind. In this sense, mantras help us slow down our brains and allow for more space in breath, mind, and body. Mantra is a Sanskrit word that loosely translates to “vehicle of the mind.”"

You can use a mantra while you are practicing your breathing by reminding yourself of a positive quote that you wish to believe. Muscle memory plays a role.

Meditation, breathing and mindfulness can be all tied together. I like to read positive daily mantras for inspiration and to keep me centered. Believe it or not, I never did any of this stuff until I was forced to find ways of counting on myself for pain management. My friend and fellow mentor @artscaping promoted mindful meditation when I first arrived on Connect. She taught me to welcome pain every morning because it would be my shadow and we'd have to learn to live together. At first, I thought she was craaazzyyy!

Remind yourself that all the meds and doctors in the world can't fix or cure "chronic". They can play a helpful role, but we must assume a part in helping ourselves.

I hope your husband found a wordsearch app. Good for you for staying focused and wanting to help yourself. It's a tall order, but mindset is a very powerful tool. What's next on your list of self-help tools?

Hello all …. Here are some things that help me: I do feet exercises in pool. You can also roll tennis ball from chair and pick up marbles with toes. Google foot exercises for feet and hands. Neuropathy socks help at night. I rub frankincense and myrrh lotion for pain on feet at night, read my Kindle, listen to music and take Tizanidine to take edge off at night.

I am in a month going to try reflexology massage for feet and hands. Hoping it helps. Will let you know.

I am determined not to give up! Talking to this group helps. 😊

I get reflexology massages for my feet.