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.

@cariloo

Hi Barb, I'm 81 years old, live pretty much alone (58 year old son with disability in basement), no dog but 2 budgies. I haven't had a fall in the last 3 years. But in the 2 years prior to that, I fell 4 times. So, I tried to exam what I was doing just prior to the fall....I was walking and talking to a friend and not paying attention to my walking. Each of those times I was only doing a quarter turn but realized that in doing so I was shifting all my weight onto one leg. It doesn't matter which leg, it's that the support leg is already unstable. I feel I need to slow down so I can concentrate on changing direction. In the house, I usually walk barefoot because I have a better sense of feeling about where my feet are/how they're positioned. However, my feet seem to go through cycles of cold and hot, so when my feel get cold, I put on thin, smooth cotton socks. I was using suede slippers with a lambswool lining, but my feet became hot too quickly. Also, I had a lack of judgement as to where my feet were and was always tripping over something or hitting a table leg. For me, barefoot allows for better foot placement because I actually still have some feeling left in toes and foot bottom. Outside, I wear flexible runners, sandals or boots. I live in Northern Ontario, so we have cold wet weather from October to May. Also, I use a cane year round. It really helps with my balance. A few people have mentioned buying a walker. I worked in a long term care hospital, and from experience with my mother, friends and myself, unless you have some knowledge from employment or elsewhere, I suggest you go to a store that sells mobility aids because there are many different kinds of walkers which are used for different purposes and physical needs. I have 3 walkers. I needed an aluminum one after hip surgery. I don't need a walker around the house, but I find it useful for standing first thing in the morning. I have a walker with a seat for outside when you don't know where you will find a seat. I took it to Paris and used it all the time there. I also have a very lightweight one without a seat which is easy to lift in and out of my car. It's great for the mall or a walk along the boardwalk by the lake because I know there are lots of seats there. I started taking a combo of gabapentin (pregablin) and tramadol about 20 years ago for fibromyalgia. My doctor (at that time) said that tramadol and an antidepressant, Duloxetine, work synergistically. The gabapentin is widely used as a neuropathic pain medication. I'm not sure why people take an opioid for neuropathic pain. My feet are ultra sensitive, so thin cotton socks and soft, breathable shoes (leather) are best for me. Truthfully, I hate being "old". Caring for myself just takes up so much of my time that I don't get to do many fun things anymore.😫

Jump to this post

Good Evening, @cariloo ~
Thank you for such a poignant and tender reply and look into your life in northern Ontario. You sure are familiar with cold, wet weather...my granddaughter, with her husband and baby live just over the Canadian border in Rainy River, Ontario. Their colder weather arrives early and ends later, also.
How wonderful that you can walk bare-foot! I can't take more than one step without leaning on or touching something really sturdy. I do use a cane 100% of the time because of balance issues, and like you, have 3 walkers ~ using the various styles as you do, according to the need and circumstances.
I think Ray's (@ray666) suggestion of one thing at a time is really wise. My faith has a saying, "the duty of the moment" that could also fit a similar approach, although it seems more of a prioritizing system than an organizing one. All of this sounds very cerebral, doesn't it?!
I can relate to what you said about how much time is spent caring for oneself. Gosh, I never thought it would take me a full hour morning and evening to prepare for the night or day ~ to say nothing of taking a shower! ~ and this is without makeup or any making myself to look presentable - lol. But this has become the case.
Still, I am so very content with the life God has given to me. I can maintain my own home with outside help of the yard in summer and snow removal in winter. And the support of folks with similar life circumstances on Connect is priceless. Sometimes we take one day at a time, sometimes one hour, sometimes one moment. And to add to what Ray said, one step at a time.
Blessings to you,
Barb

REPLY

Mine is chemotherapy induced; Stage II ovarian cancer. Lyrica and duloxetine have been prescribed by my neurologist. I would say mine is basically tolerable. I take 6 Lyrica and 2 duloxetine throughout the day. It feels like my left foot is swelling past the size of my shoe sometimes when I am at work. I definitely know when I have forgotten a dose. Balance is poor, but I try not to run into doors and corners in walls. Some days are better than others.

REPLY
@cariloo

Hi Barb, I'm 81 years old, live pretty much alone (58 year old son with disability in basement), no dog but 2 budgies. I haven't had a fall in the last 3 years. But in the 2 years prior to that, I fell 4 times. So, I tried to exam what I was doing just prior to the fall....I was walking and talking to a friend and not paying attention to my walking. Each of those times I was only doing a quarter turn but realized that in doing so I was shifting all my weight onto one leg. It doesn't matter which leg, it's that the support leg is already unstable. I feel I need to slow down so I can concentrate on changing direction. In the house, I usually walk barefoot because I have a better sense of feeling about where my feet are/how they're positioned. However, my feet seem to go through cycles of cold and hot, so when my feel get cold, I put on thin, smooth cotton socks. I was using suede slippers with a lambswool lining, but my feet became hot too quickly. Also, I had a lack of judgement as to where my feet were and was always tripping over something or hitting a table leg. For me, barefoot allows for better foot placement because I actually still have some feeling left in toes and foot bottom. Outside, I wear flexible runners, sandals or boots. I live in Northern Ontario, so we have cold wet weather from October to May. Also, I use a cane year round. It really helps with my balance. A few people have mentioned buying a walker. I worked in a long term care hospital, and from experience with my mother, friends and myself, unless you have some knowledge from employment or elsewhere, I suggest you go to a store that sells mobility aids because there are many different kinds of walkers which are used for different purposes and physical needs. I have 3 walkers. I needed an aluminum one after hip surgery. I don't need a walker around the house, but I find it useful for standing first thing in the morning. I have a walker with a seat for outside when you don't know where you will find a seat. I took it to Paris and used it all the time there. I also have a very lightweight one without a seat which is easy to lift in and out of my car. It's great for the mall or a walk along the boardwalk by the lake because I know there are lots of seats there. I started taking a combo of gabapentin (pregablin) and tramadol about 20 years ago for fibromyalgia. My doctor (at that time) said that tramadol and an antidepressant, Duloxetine, work synergistically. The gabapentin is widely used as a neuropathic pain medication. I'm not sure why people take an opioid for neuropathic pain. My feet are ultra sensitive, so thin cotton socks and soft, breathable shoes (leather) are best for me. Truthfully, I hate being "old". Caring for myself just takes up so much of my time that I don't get to do many fun things anymore.😫

Jump to this post

hi
I appreciated your reflections on living with PN especially the last sentence. with CMT at 76 I am wondering how I will care for my husband who is showing memory decline and will need a hip op soon. 2 cats keep my busy and are good company. thanks for your thoughts.

REPLY
@he9

Mine is chemotherapy induced; Stage II ovarian cancer. Lyrica and duloxetine have been prescribed by my neurologist. I would say mine is basically tolerable. I take 6 Lyrica and 2 duloxetine throughout the day. It feels like my left foot is swelling past the size of my shoe sometimes when I am at work. I definitely know when I have forgotten a dose. Balance is poor, but I try not to run into doors and corners in walls. Some days are better than others.

Jump to this post

Hello @he9, Welcome to Connect. I smiled when I read your post and saw "some days are better than others". It may not seem like much but I'm sure a lot of folks here on Connect can relate to some days definitely being better than others. I thought you might like to scan through the following discussion to learn what others have shared:

-- Chemotherapy-induced neuropathy: What helps get rid of it?
https://connect.mayoclinic.org/discussion/chemotherapy-induced-neuropathy/
A search of Connect lists quite a few members sharing what they have found helpful for chemo induced neuropathy. Here's the link that shows the comments - https://connect.mayoclinic.org/search/comments/?search=chemo%20neuropathy%20what%20helps

Have you had any PT or balance exercises to help with the balance issues?

REPLY

Cayenne pepper contains capsaicin. That stops nerve pain. Turmeric with black pepper works too. Good luck.

REPLY

Sorry forgot to say how I use cayenne.
I put 1/2 teaspoon into glass of COLD water and gulp it down quick. Horrible. Then all day I sprinkle cayenne on food and drinks. Now I use turmeric and cayenne. Am trying to work out the minimum because liver can be damaged just like cabamazepine does. But no ataxia with these.

REPLY
@cariloo

I like your theory of one. I'm 81 and always been a multitasker. I mention my age because I'm feeling the pressure of time to complete certain things eg family genealogy in order to pass it on to someone in the younger generation. This pressure is causing me a great deal of anxiety. Taking your approach, it might help to complete these projects that are so important to me.

Jump to this post

Hi, @cariloo

I'm 80, so I understand what you mean by the pressure that the passage of time brings! I feel it, too.

I forget who suggested I try the Practice of One, but, after first scoffing at the idea (too New Agey!), I tried it, and it has worked for me for 10-20 years, Before I gave this fellow's advice a try, I'd find myself still in bed but half-awake and riddled with anxiety, beating up on myself for all the things I'd left undone the day before and worried (pre-worried?) about how I was going to get done all of the things that loomed in the day ahead. I'd become my own worst enemy. These days, after coming downstairs and pressing the Mr. Coffee ON button, I plop in my favorite chair and clear any clutter I've left from the night before. My aim is to have on the little table beside me one Composition notebook, my good pen, whatever book I'm currently reading (right now that's Fernando Pessoa's Book of Disquiet), and some book of poetry (this morning it was Wendell Berry's Complete Poems).

The Practice of One works for me. Give it a try. You may like it, too.

Cheers!
Ray (@ray666)

REPLY

Hello again,
53 year old male. Peripheral and Femoral Neuropathy severe pain, swelling, balance, falling and forget about stairs or incline-declines. I was a US Army Infantry grunt and now this. Very difficult to live with, sleep with, stay positive with . Has anyone researched THC alternatives?
I am currently on Gabapentin, BelBuca and recently Buprenorphine. The issue? Dr. is simply increasing dosage to manage pain, which is sending me straight to the poor house. Is medical Tetrahydrocannabinol an option? I am eligible for Medicare at the end of this year and frankly scared out of my mind that SSDI will be revoked and/or will not be as affective as medical pharmaceuticals.
Paralysis by overanalyzing? Any one have any experience in this area? I feel if I simply ask my Dr's they will not help me because their is no incentive for them to not prescribe meds... 🙂
Thanks
TW

REPLY
@twallat10

Hello again,
53 year old male. Peripheral and Femoral Neuropathy severe pain, swelling, balance, falling and forget about stairs or incline-declines. I was a US Army Infantry grunt and now this. Very difficult to live with, sleep with, stay positive with . Has anyone researched THC alternatives?
I am currently on Gabapentin, BelBuca and recently Buprenorphine. The issue? Dr. is simply increasing dosage to manage pain, which is sending me straight to the poor house. Is medical Tetrahydrocannabinol an option? I am eligible for Medicare at the end of this year and frankly scared out of my mind that SSDI will be revoked and/or will not be as affective as medical pharmaceuticals.
Paralysis by overanalyzing? Any one have any experience in this area? I feel if I simply ask my Dr's they will not help me because their is no incentive for them to not prescribe meds... 🙂
Thanks
TW

Jump to this post

Hi TW @twallat10, You might want to attend an upcoming webinar from the Foundation for Peripheral Neuropathy (free online):
Emerging Options for Neuropathic Pain Management
Wed, Apr 9, 2025 11:00 AM - 12:00 PM CDT
------------------------
Don't miss this insightful webinar featuring guest presenter Alexander Chamessian, MD, PhD, on neuropathic pain management. Explore advanced neuromodulation techniques like spinal cord stimulation, dorsal root ganglia stimulation, and peripheral nerve stimulation, along with other treatment options. Learn about future therapies and get answers during the live Q&A session.
Register here - https://register.gotowebinar.com/register/7712309254369771606

REPLY
Please sign in or register to post a reply.