Living with Neuropathy - Welcome to the group

Thank you ..
I’m glad yo find youl.
I have progressive idiopathic neuropathy .
I now am using a walker to cope with balance issues, and am coping with burning/ tingling, lightening strikes in my legs and feet.
I’ll be heading bavk to Mayo for more diagnosis and treatment.
I’m interested in learning from others about strategies and treatment experiences addresding this experience.
Thank you

Hello @blglaser, Welcome to Connect. I think you have come to the right place to learn more about neuropathy and what treatment options are available. There is another discussion that you might want to read through and learn what other members have share about their neuropathy journey and what has helped.

Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

Here are a couple of other sites you might want to take a look at to learn more about neuropathy and about other complementary and integrative therapies that may help with your neuropathy.
-- Neuropathy Commons: https://neuropathycommons.org/neuropathy/neuropathy-overview
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/living-well/

Here is a great site with some tips on preparing for your upcoming Mayo visit - https://patientrevolution.org/visit-tools
Do you normally write down any questions you might have for the doctor and take them to the appointment with you?

From what I’ve read on numerous medical sites, chat rooms, FB and online news shows the virus and the long term effects from it are far worse than your unfortunate side effects from the vaccine. You’ve already gotten 2 why chance needing to kick yourself for not getting the booster and then becoming severely ill. Just my 2 cents! Good luck

I have the same issue and I keep 2 pairs of cold (gel pack) socks in the freezer. I put them on and go back to sleep.

The Foundation for Peripheral Neuropathy is holding a webinar in November that some of you might be interested in attending.
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FPN Webinar: Biomedical Research 101 -- Wed, Nov 3, 2021 2:00 PM - 3:00 PM CDT

Patients and scientists alike recognize the importance of scientific research to increase the understanding of peripheral neuropathy, lead us to new treatments, and give us hope for the future. But do you understand fully the research process and where patients can play a part?

Please join us for our upcoming webinar, Biomedical Research 101, to learn the basics of biomedical research terminology, to understand the basics of the clinical research process, and how to find out about current peripheral neuropathy research. Kristy Townsend, PhD, will provide a quick course in research basics, as well as an update on some of the recent research projects focused on peripheral neuropathy.

A Q&A session will follow the presentation.

Register here: https://register.gotowebinar.com/register/6924826904544731149

Hi Everyone - My name is Denise and I have neuropathy from lung surgery (pleurodesis - both lungs), and a hysterectomy. I take Pregabalin which really works well for me. I have very little pain and I am able to move around more freely. The only side effects are dry mouth and some dizziness/disorientation. I can live with the side effects because I am able to do so much more when I take Pregabalin, than when I don't take it. I tried Gabapentin but it did not help me to resume my life the way Pregabalin does. I was told about 30% of people who have this lung surgery have pain problems post-surgery.
Thank you for letting me introduce myself. I am looking forward to reading your posts!
Denise

Hi @denisemarys, Thanks for sharing what helps with the neuropathy from your lung surgery. There is another discussion you may also find helpful. I also shared my neuropathy journey along with other members in the following discussion -- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/.

I learn so many interesting things here about the condition that I have (axonal sensory neuropathy) and possible side effects of the condition and the available medications. Thank you, all of you, for sharing about your experiences.

I am so grateful for gabapentin and lyrica ... they enable me to live fairly close to normal. I have pain every day but most of the time, it's low grade and I can ignore it. Being with people and running on the beach are two activities that help me ignore it.

One night, I made a mistake in reading my doctor's instructions regarding a new medicine that was added and I didn't take the gabapentin. Omigosh, I awoke at 5 in the morning with incredible pain - like I was standing in a bonfire with flaming swords being thrust up through my feet into my body and swarms of wasps stinging the parts of me that weren't on fire. Hell could not be worse. I called my doctor and laid in bed suffering for 3 hours til his office opened. As soon as he got in, the service gave him my 'urgent' message, he called and told me to take the gabapentin. In about 1/2 an hour, I was better; exhausted, but the bonfire/swords/wasps subsided. I learned to double check doctor's instructions and I found out what untreated neuropathy feels like. My condition is progressive, so it will be even worse if I ever forget to take my medicine or run out of it. Peggy

Not sure where to ask this question...do others feel more pain in toes when wearing socks? ...if so any suggestions...thanks...cathy

Hi Cathy @mcd123, I have to wear compression socks for lymphedema so my feet always feel a little uncomfortable. Before I started wearing compression socks I had some really comfortable, stretchy, soft socks made of bamboo fibers - https://www.amazon.com/bamboo-socks/s

Is the pain in your toes due to feeling too tight or is it more that something is touching the toes? There is another discussion started by @lorirenee1 that you might want to look at - Has anyone bought Toe Socks? --https://connect.mayoclinic.org/discussion/has-anyone-bought-toe-socks/