Living with Neuropathy - Welcome to the group

Where should I begin? I'm 56 years old and currently living with (not dying from) Metastatic Breast Cancer (MBC). It is in remission currently for almost four years now. I had an earlier stage initially since late 2013. Now, after years of treatment I am being diagnosed with sensory neuropathy which so far oncologist does not feel is caused (solely at least) by the chemo drugs I've had through these years. She believes this because after stopping what we thought was the culprit, my symptoms only got worse despite many months of gabapentin.Now a neurologist is testing me further. I have an EMG scheduled for all four limbs as deep tendon reflexes are absent in all limbs. My pain, numbness, etc is terrible and the weakness especially in my lower legs (knee down) is affecting my entire life. I have learned to cope with a terminal cancer dx, but the limitations I have now has made facing each day a challenge. Even through cancer treatment, I hiked and stayed active. Now I am battling depression, anxiety, and fighting the urge to just sleep. Even typing this out is exhausting and difficult. I will know more next month about my dx. Just feel I may need a bit of guidance from people who are going through similar. Thank you

Hello @neverforsaken, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. No matter what type of neuropathy you have can give you those downer days. I have small fiber peripheral neuropathy but only have numbness as a symptom in addition to a few other autoimmune conditions. What has helped me is to learn as much as I can about the condition and possible treatments and therapies. You are definitely not alone as I'm sure there are other members here on Connect that can relate with what you are feeling.

You may want to read through some of the posts in the following discussions to learn what others have shared.
-- Sensory Peripheral Neuropathy: https://connect.mayoclinic.org/discussion/sensenory-peripheral-neuropathy/
-- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

Here are two really good neuropathy sites for learning more about the condition and alternative treatments.
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/living-well/
-- Neuropathy Commons: https://neuropathycommons.org/neuropathy/neuropathy-overview

You mentioned you have an EMG scheduled soon. If you have some questions you have been thinking about, you might consider making a list to take to your appointment with you so that you can discuss them with your doctor or neurologist. If you can prioritize your symptoms, which bothers you the most?

Turning Point - help??

So, I started having minor numbness in my feet 9 years ago, but never really bothered me except when it’s cold. Yesterday, my legs started feeling “off”, and now tonight my feet are burning and feels like 10,000 needles stuck inside them. Also, my legs are now on fire and numb up to my knees. I knew this could happen someday, but didn’t realize it’d be so sudden and ramped up! Is this normal for it to be acute versus gradual? Will it stay feeling like this or simmer down? How does anyone ever sleep or function like this without losing their sanity?? 🙁 ... any suggestions or thoughts?

@rivermaya34
I’ve had Neuropathy over 30 years and a number of the drugs used to treat it now weren’t yet available. Not long after Neurontin became available I started taking it. Even though I took the maximum dose of 3,600mg I got no relief from seizures or Neuropathy. I took various opioids including fentanyl which helped me the most. I don’t remember how quickly my Neuropathy progressed other than in the beginning it was very painful and about 10 years ago my feet became numb.
Take care,
Jake

Any New news on neuropathy? Burning feet!!!!

@jimmy370 - There are a couple of other discussions more focused on burning feet. You started the first one but I'm not sure if you have seen all of the responses in the discussion.

-- Burning feet and legs: https://connect.mayoclinic.org/discussion/burning-feet-and-legs/
-- Burning Feet syndrome: https://connect.mayoclinic.org/discussion/burning-feet-syndrome/

You also may want to read through the Member Neuropathy Journey Stories: What's Yours? discussion to learn what other members have shared helps them - https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

Here's a member story in another discussion that you might find helpful - https://connect.mayoclinic.org/comment/611196/

What treatments or alternative therapies have you tried?

@jakedduck1 Wow, that is a very long time...what a trooper you are!! I hope not to progress to Fentanyl, but Gaba barely takes the edge off right now. Still playing around with dosage right now. Thank you for the info, that was very helpful. I’m so sorry you’ve been in pain for SO long ... I wish you all the pain-free, joyous days in the world!
-Karen

what do you do for the numbness? Anything other than Gab & Fentanyl?

Hi there, @bcool123. I think what you are requesting is something like your online bank account. You want to specify and receive only the dates or days that include the information you are seeking. Is that correct? I am going to ask @johnbishop if that is conceptually possible. John?????

Chris

@bcool123 and @artscaping, The posts in a discussion are in chronological order but when you reply to a post it will go at the bottom of the order but will include the post you were replying to above it - you just have to click +(show) to show it and then Jump to this post link if you want to go to that post in the discussion.

Here are two tips you might find helpful...
-- Replies and @mentions: How do I know who is replying to whom?: https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/replies-and-mentions-how-do-i-know-who-is-replying-to-whom/
-- [TIP] Customize the Order You View Posts - See New Posts First: https://connect.mayoclinic.org/discussion/new-customize-the-order-you-view-posts-see-new-posts-first/