Living with Neuropathy - Welcome to the group

Hi Randy. The adjustments I've made in the past few years relate to keeping safe and maintaining a positive attitude. I have both sensory and motor PN which lends itself to poor balance. Adjustments such as using a cane when needed and I fought the idea of using one for quite some time. I also cut back on sugar intake to the point I've lost 10 lbs since September (intentional) just by reducing sugar. I have increased my hours of sleep each night, rest is good for PN. I was always a person on the go and now, I don't push it. In my mid 70's, I try to make sure I don't burn up too much energy in the morning hours, so I have energy later into the day as well. Best to you!

Yes. My pain has gotten worse over the past few months. The pain is in my legs burning and cramping. Now I’m seeing bruises.

Hello @hburley50, Welcome to Connect. If I read your previous posts correctly, you've tried spinal injections, gabapentin, naproxen and tizanidine but you only have relief for a short period of time. Can you share more about your diagnosis?

Interesting, Ivgal, in that I am an 85-year-old Wisconsin male where alcohol is so ingrained in our culture that we are blinded to its ill effects. It's toxic to the human body, yet warnings are muted because the industry lobby is so strong (parallel to the NRA keeping gun control muted). I had an alcoholic father so I was quite aware of how bad extreme use was so "having a few beers at the end of the work day" seemed pretty normal and harmless. Excluding some pretty heavy beer drinking in college, having a beer or two (maybe 3 or 4 when company called) was my guide. No tavern sitting, no weekend binges, and certainly no booze hidden around the house! Imagine my surprise at age 75 when a new doctor, upon hearing of my drinking history of drinking 6-8 beers a week, wrote down "alcohol dependent!" (The doctor was not from Wisconsin!) I was diagnosed with peripheral neuropathy caused by long-term use of alcohol. Later neurological tests confirmed the diagnosis. While I quit alcohol use immediately, the numbness has progressed (no pain and no impact on balance) to mid-calf with the intensity lessened with daily doses of super vitamin B-complex and 300 mg R-Lipolic Acid (with Biotin optimizer). With my doctor's approval, I have just started a monthly trial of 10,000 mcg (10 mg) of Biotin.

Hi, what a nice welcome! I’m writing for my husband who has PN without much pain, thankfully but does have the progressive numbness in his legs. That is his main concern. We’re getting tired of the scans but just looking for anything that might work. Thanks for listening.

Hi, new to the group, I have been experiencing tingling, stabbing pain in my feet up through my ankles for a few years now. Taking Gabapentin, and stop taking all pain medications like Tylenol, Ibuprofen, most of all Naproxen.
I do also take Duloxetine for my sanity and have been told it helps calm the nerves in my feet and hands. I have tried other things like a clinic that I ended up paying out alot of money for no real results, and after going through stimulating my nerves in my feet with foot baths and while running shocks into my feet for up to 30 minutes a day. Also putting on a contraption that also was supposed to reset my nerves by running this for so many minutes a day. I tried their special supplements for 6 months until I ran out and found that I would have to order more supplements monthly that were very expensive, I had to stop with no real results. Also add the diet that I tried to stay on all greens mostly, no processed foods, mostly salads and lots and lots of water. I did pretty good until I couldn't keep that up. At this point I am dealing with pain 24/7 in my feet, ankles and slowly climbing up to my lower calves. I also have pain in my hands mostly fingertips tingling and soreness, I drop things and struggle to just walk around the house. I watch some of these videos like I did just tonight about how the new supplement called Nerve Freedom can give you great results in just 10 to 20 days. And if you continue to use up to 12 months you can get complete results and neuropathy never returns. Neurologists name is Mark Halbert (not exactly sure of the spelling) talks about Okinawa Capsaicin and 3 added ingredients of Curcumin, Alpha Lopic Acid and Root Extract. Has anyone heard about this and had any results if tried? Too long I know I will check back in and keep this shorter. Karen

Welcome Karen @kpotter62, Another member @dinee, started the following discussion that mentions Nerve Freedom that you might want to read through - Does Mayo endorse specific neuropathy supplements or cures?: https://connect.mayoclinic.org/discussion/does-mayo-endorse-nerve-feedom-supplement/.

Most of us with various forms and symptoms of neuropathy have spent a lot of money on so called "cures" in the hopes that it will be the one that provides some relief. The reality is that a cure does not exist. It's up to each of us to learn as much as we can about our condition and what treatments are available that might provide some form of relief. If you haven't seen it yet, the Foundation for Peripheral Neuropathy is a good place to start - https://www.foundationforpn.org/living-well/. They also have a list of available treatments including complementary and alternative ones here - https://www.foundationforpn.org/treatments/.

Many of us have shared our neuropathy journeys in the following discussion that you might want to scan through to see if anyone has similar symptoms to learn what was shared.
-- Member Neuropathy Journey Stories: What's Yours?
https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/
Do you mind sharing a little more about your neuropathy diagnosis?

I started out with the tingling sensation and feeling the heat and stabbing pains in my feet. Did not have any idea what it was - so went to the good feet store and they thought I needed supportive objects in my shoes HA! It made things worse for me after spending a lot of $ on those supports I fought like crazy to get my money back. Then my Dr sent me to a foot Specialist, after getting X/Rays and waiting for over an hour I met with the Dr only for him to tell me this first thing: Well you will be seeing me the rest of your life and there is no cure for Neuropathy so you will need to learn how to deal with the pain???? I left crying feeling so defeated! Never went back to him. Then I found a sport/Athletic Specialist that said she would try to help but she rarely seen patients with this condition but has seen a few. She sympathized with me but didn't have any real hope other than Take Gabapentin and come back to see her or see a Neurologist, which is what I did next. He told me to go to the Gym and lose weight, at this point I was off balance and very wobbly on my feet. Needless to say, I did not feel comfortable going to the gym. I try to do chair exercises feet and hands hurt 24/7 no real relief other than at night (the only time I take Gabapentin and Duloxetine) to help me sleep a little better. Diet isn't going the best, but I do try, since having Covid 5 yrs ago my taste and smell never came back like it was. I do try the things I use to love now and then hoping I will love them again, not a lot of luck with it thought. My husband saw something on a program for a clinic that specialized in Neuropathy and how this Dr Specialist had Neuropathy in her shoulder and was able to treat it with special diet and the Nerve Stimulator as well as the water stimulation to give her complete freedom again. They were over an hour away, my husband took me for the one appt and $1,000.00 of dollars later we came home with a few things to try, and I did this faithfully for over 6 months. Let's just say it is 2 yrs later and I just refinanced our equity loan (obviously Insurance doesn't cover any of the supplements or equipment that I tried) to get rid of what was owed on all of that trial and error. At this point I use these neuropathy socks take gabapentin and duloxetine at night and go day by day. Always looking for something to try dulling the pain as much as possible. I know there is no cure but keep hoping someone will find one. My husband started having pain in his feet mostly his heals, and after about almost a yr of this he is finally going to the Dr today. So, between us and our 2 senior dogs we are all doing a bit of limping and walking awkwardly. Oh, to age with grace!

Hi sorry to hear of your bad experience. I find amytripline helps somewhat

I have had SFN for over 20 years caused by Lyme Disease but was only diagnosed 5 years ago through a biopsy. The biopsy was finally done by my neurologist and they took samples from my leg in three places. The biopsy was not a good report.
To make this kind of short …the pain in my calves and feet has worsened alot of the past few years. I have tried dozens of medications but can’t take a high enough dose (due to side effects) to make a difference. I am currently on Lyrica 50 mg and Klonopin half miligram for sleep.

I also had a pain stimulator implanted last year but it was of no help at all sadly which was a huge disappointment.
My question is I now am having bad fatigue everyday which feels like it’s behind my eyes and forehead. It gets much worse when I do my photography (birds and nature etc.) it’s almost painful. I have had every eye exam you can think of- scans etc and there is nothing wrong with my eyes which they tell me it’s actually coming from my brain.
I seem to sleep well with the medications but wake up with this awful fatigue feeling.
Anyone else experience major fatigue that rest of sleep doesn’t help. It’s been a very stressful few months.
I could basically live a normal life if I didn’t have chronic ongoing fatigue…I don’t feel the incredibly horrible pain if I am standing or walking so I try to stay upright as much as possible. Night is when it’s bad and sometimes I can’t sleep at all.