Living with Neuropathy - Welcome to the group

Good morning. My husband has been diagnosed with Charcot Foot Disease. Wondering if anyone here has been diagnosed with this disease and not also been diagnosed with Charcot Marie Tooth disease. Thank you.

Welcome @charlie24, I see you also mentioned your husband is struggling with PMR since 2018 and hasn't been able to get off of prednisone. Mayo Clinic has some information on Charcot-Marie-Tooth disease here - https://www.mayoclinic.org/diseases-conditions/charcot-marie-tooth-disease/symptoms-causes/syc-20350517.

You might also want to look through the comments by other members on CMT. Here's a search link that lists member comments - https://connect.mayoclinic.org/search/comments/?search=Charcot%20Marie%20Tooth%20Disease.

Do you mind sharing what is the most difficult symptom for your husband to manage?

The bones in his right foot are unstable, shifting, possibly fracturing, and the foot has no arch and stays very swollen. He was been diagnosed with peripheral neuropathy several years ago. It's difficult finding a doctor that treats charcot foot disease.

Hi, Barb

"Negative 'one'?" I like that? I'm going to aim for it. 🙂 Years ago some smart fellow suggested I try what he called the Practice of One. One thing at a time, one of all things. I try very hard to adhere to that today: one task at a time (until completed), one book that I'm reading or pleasure, one trusted daily newspaper, one favorite magazine ( only the current issue), one good notebook (serves as a journal), and one damn fine pen (at the moment, mine is a Vision Elite gel pen). I reaize this sounds kinda anal –– all these strictures –– but the Practice of One has served me well for years, helping me to get stuff done, books read, letters written, time with friends enjoyed –– all the while keeping me sane. Kinda sane, anyway. 🙂

A Cheery Thursday to you, too, Barb!
Ray (@ray666)

You sound like me starting with my first hip replacement back in 2019. I've had 2 other surgeries since. If you are like most of us you have or will try so many things, you're not sure what's working the best. I've used a Nova Lab red light pad for 2 weeks and I think it is helping me walk further and stay on my feet longer. Let us know if you find something that works well. I miss being able to walk without shoes sometimes. Many prayers to all living with this.

There is a new non-opioid pain medication that I read about . Called Walgreens and they have it. It's called Journavx . When I googled it, a $30 a month prescription coupon printed. I am going to ask my pain specialist about it at next visit. Want to get off of the Norco.

FYI - Upcoming Foundation for Peripheral Neuropathy Webinar

Emerging Options for Neuropathic Pain Management
Wed, Apr 9, 2025 11:00 AM - 12:00 PM CDT
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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

I don't understand the "cayenne". How do you use it to relieve your symptoms? And who recommended this as a treatment?

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.

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.😫