Member Neuropathy Journey Stories: What's Yours?

Hi all
This is my story.
I am 75. Up until about 3 years ago, I was (I thought) remarkably healthy for my age. I was skiing, road biking long distances, hiking, etc.
I was having the usual old guy's problems with urination, and eventually decided to have a procedure done. My urologist ordered a CT scan of my belly, and, to his and my surprise, discovered a large tumor (lymphoma) on my small intestines, and numerous other tumors on both kidneys.
Long story short, the lymphoma was resected, turned out to be very slow growing type. I probably had it for years. The kidney tumors were unrelated, and were determined to be something rare (onchocytoma), and not malignant, so they're still in there.
BTW, I finally had the prostate surgery, which went well, except that I was found to also have prostate cancer, but again, the very slow growing type. All these conditions are simply being watched for development
For years, I had been noticing strange feelings in my feet. They felt like they were sweating, but weren't. This started happening when wearing shoes without socks.
Around the same time as my surgery , the feelings in my feet began to get worse, to the point where I couldn't wear any shoes or socks without experiencing severe burning. Finally, I got what was going on, saw neurologists at UCSF, had the million dollar workup, including skin biopsy, and was diagnosed with small fiber neuropathy of unknown cause.
I've tried almost every medication in the book, and can't honestly say that any have helped much. Currently, I'm on 150 mg of Lyrica at night (I tapered down from 450 mg daily, just to see what happens, and honestly, I can't say for sure). I'm also on Cymbalta. I have tried tramadol (doesn't work for me), gabapentin (as expected, same as Lyrica), low dose Naltrexone (who knows) and various supplements, vitamins, acupuncture, gadgets, the entire catastrophe.
Ironically, with all these diagnoses, the only thing that bothers me is the peripheral neuropathy, which has put the kaboom on half my life.
I'm trying my best to live as much of my life as I can. In particular, I am still able to ride fairly long distances on my bike, which I do whenever I can.
What I tell friends who I suspect may have PN is that they should see a neurologist soon. If they're lucky enough to have a treatable cause, the sooner the better. Also, it is helpful to have an expert do the workup. As we know, the disease is complicated and tricky to diagnose and treat. It's also helpful to understand that with these types of diseases, it's not at all unusual for medical providers to sometimes not act as well as we would like. Some even dread seeing patients with these types of chronic pain problems. So, don't take it personally, or allow it to make you angry. That doesn't help.
I had to quit a very satisfying (although part time) job simply because I couldn't wear shoes and socks. I've also had to quit numerous recreational activities, as noted above.
Regarding social interactions, I have less than before. Some of this is because sometimes, I don't feel well enough to go, or the venue will make me uncomfortable. I was a life long serious traveler. but I hardly travel at all now. Also, I have grown tired of having to explain to people what's wrong with me. I look like a healthy 75 y/o man. People's eyes glaze over, and I feel I'm boring them. Ironically, I often feel better in company when I finally participate, probably because I am distracted from the pain. This has led me to trying to learn how to distract myself.
It's mostly our responsibility to find out what helps. It's almost always different for each person. There are ways to feel better. We have to do the work and experiments to find them.
Hope this helps.
Jeff

I wonder if anyone in this thread has tried to reduce symptoms thru a major change in diet? Such as avoiding sugar, processed foods and basic common carbs like white rice and white bread. I have been told that some people have had some degree of success through avoidance of sugar (but I wonder if artificial sweeteners are just as bad.)

I wonder if anyone in this thread has tried to reduce symptoms thru a major change in diet? Such as avoiding sugar, processed foods and basic common carbs like white rice and white bread. I have been told that some people have had some degree of success through avoidance of sugar (but I wonder if artificial sweeteners are just as bad.)

I wonder if anyone in this thread has tried to reduce symptoms thru a major change in diet? Such as avoiding sugar, processed foods and basic common carbs like white rice and white bread. I have been told that some people have had some degree of success through avoidance of sugar (but I wonder if artificial sweeteners are just as bad.)

I fell while walking my small dog on Dec 1 2022. Had wrist surgery with a
plate and screws to correct. I am now terrified to walk outside! Do you
get depressed often?

Hello, I have just been diagnosed with Diabetic Peripheral Neuropathy. I am 53 but have been feeling signs of neuropathy in my feet for about 20 years. Very minor but knew because I have been type 1 diabetic since the age of 10 that was to be expected. When I was a kid we couldn't test our blood sugar so I lived a pretty normal kids life. I have always been very active and slim until Covid I would say. I turned 50 and as a teacher was sitting on my butt at a computer instead of standing all day with my students. What triggered the appointment to the doc was that I broke my 5th metatarsal and it never seemed to recover. Several follow up xrays of the foot, months past when it should have healed up. The xrays showed that the bone had healed. So why am I walking on the outside of my foot and can no longer hold my weight on my tippy toes? And could my prior broken tibia and fibula 15 years ago be contributing to why I can't walk normally? (I still have a plate and 6 screws in my foot. My endocrinologist did her typical touching of the toes with her little device and said everything was fine and I was frustrated. Went to physio, chiropractor, and finally back to my family doc who I saw his nurse practitioner and she really checked my feet and sent me to a neurologist. Finally, he did the tests and told me I had Diabetic Peripheral Neuropathy and there was nothing I could do, not even exercising, just keeping my blood sugars under control. He told me if I needed I could come back and that there was something he could prescribe for pain. Luckily I don't have much pain. I realize after my research and reading your posts that I am so so lucky not to have the pain...yet. Now what? I am only 53...I cannot walk more that 2 kilometers as I feel like I am walking on the side of my foot, limping. doing the test he used a pin and poked my leg from the toes up to my knee. I definitely could tell then how far up my leg the loss of feeling had gone from him doing that - not full feeling until the knee really. Exactly what nerves and how much and where for that matter its hard to tell. I think I should go back to the neurologist to determine exactly what part of my feet and how bad it is to what point, but will that really matter? I don't think it will. Now what? Can I delay the progression? This neurologist told me it progresses at different rates for different people. I still have a 15 and 11 year old at home whom I would still like to go hiking with but I fear walking on uneven ground as I have sprained both my ankles several times (I no longer wear elevated heels for fear of rolling my ankle). Im not depressed or anything and anything you can share would be helpful. NOthing will scare me - but I am interested in how quickly anyone has noticed progression and whether exercise will help. I do have a bit of pain but nothing at this point that I am needed pain killers.
I'm very grateful to have found this website.

I started my journey with neuropathy when I was in my early 50s, with some numbness that started in my toes on both feet. I mostly ignored it because there was no pain and I really didn’t think much about it. After a few years, the numbness progressed to the bottoms of both feet and I mentioned it to my primary care doctor who said it could be nerve damage. He said they could run some tests and determine if it was nerve damage. I asked if they determine if it is nerve damage what can be done. I was surprised when he mentioned there was not any treatment that will help with numbness.

The numbness gradually increased over the years and in my early 70s the numbness had progressed to just below my knees. It was at this point that I was worried about my mobility and what the future would hold so I talked with my primary care doctor who helped me get an appointment with a neurologist. The neurologist scheduled some lab tests including an MRI, nerve conduction test and a physical exam. I was diagnosed with idiopathic small fiber peripheral neuropathy but unlike most people diagnosed with neuropathy I only had the numbness and no associated pain. I was disappointed that there was no treatment available even though I had a diagnosis but that is pretty much what my first doctor had told me 20 years ago.

After I received my diagnosis of small fiber PN I was trying every topical cream available that said it would help neuropathy with zero results. Then I found a book by Dr. Terry Wahls, The Wahls Protocol. She shared how using functional medicine and nutrient rich foods helped her treat her symptoms of multiple sclerosis and get her life back. This started my journey on looking at nutrition as a possible treatment for my neuropathy.

I learned there are a bunch of companies and folks with neuropathy treatments looking to take your money and it is up to you to do your own research and avoid scams. Fortunately, there is a lot of information on how to avoid scams but it is out of sight, out of mind for a lot of folks. Here are the ones I have used:

Quazar's wonderful guidance about avoiding scams and snake oil cures:
-- https://connect.mayoclinic.org/discussion/how-to-avoid-quacks-and-snake-oil-treatments/

FDA's Health Fraud Page:
-- https://www.fda.gov/forconsumers/consumerupdates/ucm278980.htm

NIH's National Center for Complementary and Integrative Health (NCCIH) which offers guidance about integrative health and how to evaluate it:
-- https://nccih.nih.gov/health/decisions

That said, I have found a protocol of supplements developed by fellow neuropathy patients that works for me and has helped others with PN get off the pain medications. I was skeptical at first and took the list of supplements and vitamins to my doctor who shared it with the Mayo pharmacist to get his feedback on any interactions. His only comment was he thought the omega 3s in the list was high.

You can read more about it in this discussion:

Have you tried the new Protocol 525 product for neuropathy relief? https://connect.mayoclinic.org/discussion/have-you-tried-the-new-protocol-525-product-for-neuropathy-relief/

I started taking the supplements/vitamins September 2016 and by December the numbness in both legs went from just below the knees to just above the ankles. I have not made any more progress, but I am OK with it since I feel it has stopped the progression. My neurologist had told me to just watch it and let him know when it gets worse – in other words there is nothing I can do to fix it. Recently I have seen some feeling return to my feet at different times during the day which gives me some hope of more progress and a new normal.

I’ve been a member of Mayo Clinic Connect since 2016. And it gives me great comfort to talk with others, share ideas and information, not only here in the Neuropathy group, but also in other groups as new health questions come up, like managing PMR, getting a knee replacement, a CPAP, etc. Ahh, the joys of aging. Hey, if you qualify ;-), you might also want to join me in this group on Connect: Aging Well. (See all 70+ Groups on Mayo Clinic Connect here: https://connect.mayoclinic.org/groups/)

What’s your neuropathy story?