Member Neuropathy Journey Stories: What's Yours?

Welcome @cneubauer, Thanks for sharing your experience and what's helped you. Neuropathy is definitely a journey with many different side trips for a lot of us. I'm also working on keeping my leg strength up with daily exercises. Most of mine is on an exercise bike since my walking is not real great. I do have the senior shuffle down really well though🙂. If you haven't already explored the Foundation for Peripheral Neuropathy website, it's a boon for learning more about neuropathy and what has helped others improve the quality of their life - https://www.foundationforpn.org/living-well/.

Do you have swelling in your feet or do they just feel like they are swollen along with being cold?

@johnbishop Thanks for the info regarding the website, I will check it out for sure. To answer your question, my feet feel swollen, but they do not look swollen, weird! I cannot wear certain shoes that are real stiff, but those with a tad of a give I can wear, but not for long if I am doing alot of standing. I know sounds weird and does not make sense, but with trial and error I have figured out the shoe thing. I will be darned if I cannot be somewhat fashionable, lol! They feel cold, not cold like I have been out in the cold weather for an extended time, just cool I guess is a better way to describe it. As far as your balance and walking goes, do you feel like your inner part of the sole of your foot is lower than the two sides of your foot on the bottom. I know that sounds weird, but I think that is part of my balance issues, I have to make sure I keep track of where I am walking and if there is an uneven surface I have to be prepared to adapt. Also, someone made a comment along the line about the ability to use handicapped parking, I do and get funny looks sometimes, have gotten used to it.

As discussed here ~ use LDN ~ Low dose naltrexone _info here - it works for pain!
https://ldnresearchtrust.org/conditions
https://www.drugs.com/medical-answers/low-dose-naltrexone-ldn-3570335/

I have the same, sometimes it feels like there’s a rubber band on my ankles and my feet want to blow up. They also feel cold all the time. I say they feel like they’re in ice blocks. The electrical zaps are unbearable. I am fighting it with home exercises and pt every week but I fear for the future…

Hello @jan64. I'm sorry you're experiencing neuropathy symptoms and all that comes with. It is quite a learning curve to adapt to change or loss of function or abilities. I definitely feel your words and have compassion for you.

Indeed, it was 4 years ago (wow, already) October 26th, that I entered the pain rehab center at Mayo Clinic. PRC was one of the best experiences of my life. The program teaches a person as a whole and equips them strategies and a plan to move forward with chronic issues they have through physical, emotional, behavioral, and chemical coaching and therapies.

I was diagnosed with central sensitization which is a central nervous system syndrome causing chronic pain and or heightened sensory dysfunction. During the time neuropathy was kicking my butt, I was focused strictly on that not quite understanding there was a bigger picture. For that matter the PRC program was exactly what I needed to make the most out of how life had changed and how to find positivity and adaptation moving forward to focus on what I could do versus what I couldn't.

It appears you're on the right track and having the proper testing. I wish you good luck with the skin punch biopsy results and completely understand the perplexity of emotions and not knowing if you hope for positive or negative results. My opinion of that is to learn and understand as much as you can about your condition, be your best advocate and make sure you clearly understand from your doctors what your body is dealing with so that you can move forward with a plan. Will you report back on your results?

@wolfie1 I totally agree with you about fear for the future.....what I hold on to is that I am doing all I can do that is suggested currently. Diet, exercise, otc meds, supplements, joining support groups like this, and keeping myself up to date on anything that could be of help to me. I also have given myself permission to be angry that I have been given this burden, and seeing my physician yearly, and getting the same old thing said to me. All these things, I feel motivates me to do everything I can possibly do to live my best life, and not be bested by my condition. Hope this helps.

I first started having diabetic neuropathy pain a few years ago. The pain was severe, mostly at night. I came across Nerve Control 911 and started taking 2 capsules a day. I’ve done this from then until now. One doctors remedy was to start me on 5 mg. of cyclobenzaprine. 2 years later a neurologist examined me and said the cyclobenzaprine was a good move but I should add pregabalin, 75 mg. daily, to the regimen. I did that. Then thinking that I was covered by pharmaceutical drugs I could wean myself off the Nerve Control 911. So I started reducing the amount of NC911 I was taking. 4 days later, in the middle of the night, my foot pain returned! Severely! I’m back on NC911, 2 caps a day and will be on it for life. Perhaps it is the pharmaceuticals I should wean myself off of!? Will ask my doc at our next meeting.

Thank you @cneubauer! I am continually working to improve. One of the hardest thing is coming to terms with what is now my 100%. I had hope for so long that I would be able to do everything I used to do. Just facing this finally…that being said I’m so happy to have found this group! It feels great to know people that suffer the same! I’m learning more, and so happy we all know what each other is going thru. I’m sorry for everyone that suffers and pray for all of us that a remedy is found.

I’m wondering how many people still drive?

I still drive daily and have driven six 1600 mile round trips on business in the past 5 months. I try not to drive more than two hours straight. Taking those first few steps, after driving almost any distance, is an adventure. I have had a few occasions of not recognizing the brake pedal vs the accelerator, but fortunately not caused any damages. I take great care when braking at all times.