Member Neuropathy Journey Stories: What's Yours?

@johnbishop thank you for your story. Question: Isn't Omega 3 just fish oil. I believe I will eventually follow some regiment like yours to see if it helps. Years'n years ago a doctor said I have pre diabetes. Then I didn't go to a doctor for anything for 10 years and went recently (last year). Doctor said I had a A1C of 14 I think it was and a blood glucose level of 290 I think. He was flabberghasted. Mind you, I'm 5'5" tall and not overweight, at about 150 lbs. So I left his office and completely cut sugar and carbs out for 3 months. When I went back my A1C was 5 and blood sugar at 30 or something. He said they've never seen that much improvement in 3 months and the neuropathy I was feeling in my toe also improved by 50%. Oh and I had started exercising in the gym at work.

But I stopped exercising and introduced some carbs and sugar into my diet and my neuropathy worsened again. I've had it for about 3 years total and the progression is obvious and the worst it's been John like you I too have back issues. I had a major back surgery at T9-10 which I've read is really rare. They normally cut a rib out permanently and temporarily remove your intestines to do a laminectomy on the thoracic vertebre to relieve pressure on the nerve. But this doctor, fancy as he was, decided to go through my back. Well guess what? At that spine level in your back EVERYTHING comes together there. Ribs, strong, fibrous latisimus dorsi muscles, carteledge... that's why they never use to go through the back. the surgery was not successul and I've been going to the pain clinic for a decade now. I recently asked for a medicine change from Norco to Tramadol. Norco wipes out the pain if you take a lot of it but it's short acting and a lot of side effects like groginess and of course addiction. So since a family member was using Tramadol I decided to ask the pain doctor for a medicine change to Tramadol. For me, that stuff works. it's not a narcotic per se although it may be listed as in that family. Along with the Gabapentin, the Tramadol actually makes the neuropathy bearable for sleeping at night As for surgeries I also had a major knee surgery some 20 years ago where the doctor cut a tendon or something by 1/3rd and stretched it across the knee cap to reposition it. Major, major surgery. It worked for the knee cap pain but regular arthritis on the joint took over and I have been limping for 20 years. Which gives a person all kinds of referred pain due to uneven gait and body usage. Combined with unrelenting back surgery pain and now, lower back pain, the neuropathy just seems to jump on the pain bandwagon and have a hey day. I'm 63 by the way. I've been a construction or factory maintenance worker my whole life and come from a family of severe arthritis sufferers. Then add it 45 years of hard labor and you get the arthritis picture. Planning to retire in 2023 and I'm sure doing things on MY terms and timeline will ease a lot of "overuse" as one doctor described my back, knee, and body. Well you're welcome America, as I've "overused" my body to build steel mills, power plants, oil refineries, hospitals, schools, homes, and factories. I mention this because I view it as "building America" for all of us and that has inspired me to go past the "handicapped" status like most of my family has been. Not one to collect unemployment or disability, they'll have to peel me off the factory floor before I would quit early. So I've done some if not all of this to myself, for Family, Country, and God.

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?

Interesting that you have also adopted the Wahls Protocol. I just started reviewing her recommendations. I’ve been limiting my carbs, especially white flour, white rice, and of course refined sugar. I do eat a lot of fruit though and I know that’s high in carbs and sugar. Hard to get by without it when it’s fresh and local in the hot summer!

Sigh, her book the Wahls Protocol is what got me started on my journey but I vary off course quite often, especially with the carbs. I too love fresh fruit but I know I don't get enough vegetables. I have pretty eliminated all fast foods which really were one of my biggest obstacles. I've reduced the refined sugar but do get off track once in awhile.

Awhile back I got on a juicing binge but gave it up after a month or so because it was too much work to clean the juicing machine. Last week I bought a new Ninja Cold Press Juicer and have used it twice so far to make orange, carrot and ginger juice which turned out great. Best part was it was a piece of cake cleaning the juicer. Everything but the base machine can go in the dishwasher. Yesterday I winged it and made some spinach, orange and ginger juice and I'm liking the orange carrot juice better. I had a lot of spinach to use up before it got old and it wasn't bad but I like the other much better.

If you are limiting carbs you might want to participate in another related discussion here:
-- Low-carb healthy fat living. Intermittent fasting. What’s your why?: https://connect.mayoclinic.org/discussion/low-carb-healthy-fat-living-intermittent-fasting-whats-your-why/

John I have a question for you. I am having a bit of a problem. I have been taking my regular blood pressure medicine which is Benicar 20 mg every day. My cardiologist added Metoprolol 25mg XR ( 1/2 at bedtime) I have been doing this to keep my heart rate down. I started to notice my blood pressure is going up. It is staying in the 140-150's over 80-90. I have Clonidine 0.1 mg as needed. I have taken it last week and it worked. Now it is not. I spoke with my cardiologist and she wants me to up my Metoprolol to 25 mg at bedtime. I have read about gastrointestinal issues. It seems funny that all of a sudden my pills are not working. I took a clonidine last night. Clonidine usually works right away. This morning my heart rate is in the 60 range. When any other day it is in the high 70 range. I would take a metoprolol now except for that. I find it odd that all of a sudden my medications are not working. Is this common in people with neuropathy? This is very worrisome to me. If anyone else knows about this I would be glad to hear from them.

Sigh, her book the Wahls Protocol is what got me started on my journey but I vary off course quite often, especially with the carbs. I too love fresh fruit but I know I don't get enough vegetables. I have pretty eliminated all fast foods which really were one of my biggest obstacles. I've reduced the refined sugar but do get off track once in awhile.

Awhile back I got on a juicing binge but gave it up after a month or so because it was too much work to clean the juicing machine. Last week I bought a new Ninja Cold Press Juicer and have used it twice so far to make orange, carrot and ginger juice which turned out great. Best part was it was a piece of cake cleaning the juicer. Everything but the base machine can go in the dishwasher. Yesterday I winged it and made some spinach, orange and ginger juice and I'm liking the orange carrot juice better. I had a lot of spinach to use up before it got old and it wasn't bad but I like the other much better.

If you are limiting carbs you might want to participate in another related discussion here:
-- Low-carb healthy fat living. Intermittent fasting. What’s your why?: https://connect.mayoclinic.org/discussion/low-carb-healthy-fat-living-intermittent-fasting-whats-your-why/

I like to cook Italian food, so I struggle with pasta. I’m trying to limit it to once per month. Winter casseroles will be my downfall I’m sure. Nothing better in a Vermont winter. I justify occasional small digressions as ok for emotional uplift!

Thanks for the link, I’ll check it out.

@athenalee perhaps you can still cook pasta dishes more often. There are alternatives available. Have you tried Pasta Zero by Nasoya? Hopefully you will still be able to continue with your Italian cooking.

No, never heard of konjac before, my new word of the day! Seems healthy. I tried the chick pea noodles which were akin to eating cardboard. I’ll see if my coop has them. Thanks!

I do polenta which is tasty with sauce. Not great on the carb factor, but better than regular pasta.