Member Neuropathy Journey Stories: What's Yours?

I tried all the topicals, but Horse Liniment works best of all
Madge

Where do you get that?

Where do you get that?

Any farm supply store, tractor supply, coastal, or you can order online. Just for kicks I will tell you. I also go the other way and use absorbine jr. made for humans on my horses. It is an easy to apply liniment for sore legs. You could try that product too.
I do mix horse lineament in a lotion base and rub on my feet before bed every night. The cooling effect helps me get to sleep most nights. I do occasionally still end up in my chair with my feet on an ice pack, but it is fewer nights than ever since I started doing this. I look for one with peppermint oil in it when shopping for the liniment, I will use different ones and I find those are best for me.

Hello @SusanEllen66, I know the hot/cold feeling in the hands and feet can be pretty awful at times. It's good to know that you found some topicials that provide a little relief. The Vasculitis Foundation has some education videos on PAN on their website -- https://www.vasculitisfoundation.org/education/forms/polyarteritis-nodosa/. One in particular that might be helpful is The VF Road Map to Wellness Webinar: Focus on Polyarteritis Nodosa -- https://youtu.be/zKssb0npKjs

Have you done any research to find other treatments that may help?

Hi - I’m new here and glad to have found this resource. I’d like to hear from those with SFN who have no other co-morbidities.. What are your symptoms and what works for you? I have pins and needles in feet and hands, numbness in calves, back of upper arms and front of thighs and cheeks especially when cold. If really cold, numbness in lower back and hands and feet are icy cold. Thank you.

It's unclear exactly when it started. It seems like the earliest could have been 12, but I didn't start to see a pattern until 19 between then and 25 I saw a bunch of specialists about all my different symptoms and got a long list of diagnosis's.
My symptoms were burning and tingling in my hands and legs occasional loss of feeling that would very in time (minutes to weeks). The loss of feeling could be from waist down, my whole left or right side, or one/both arms. Elevated resting heart rate, and complete loss of feeling in finger tips and sense of hot and cold in palms. At 24 I started to think it was MS because my cousin has it and we have all the same symptoms so I made an appointment at MUSC. Almost a year later (2019) I got in, they did every test under the sun had me see a few other specialists. Then they did the skin punch biopsy and found ISFN. I was passed off to the neurologist over SFN there. Since then I haven't had much help since I can't take steroids and things like gabapentin don't help with the pain just makes my memory worst than it already is. I've been on metoprolol, stopped because I'm allergic. Tried gabapentin and things like it but didn't help. I've tried a bunch of different antidepressants and anxiety meds but they don't really do anything. Currently I'm on Librium and trying to find something else because my symptoms are just getting worse.
If my best friend said she had neuropathy I would tell her, look at us over achieving the rest of our school again and beating them to the wheelchair stage, it's not a bike club but we're still on wheels. We have dark humor. Then I would say invest on safety measures handrail in shower ect. Don't take baths. Don't shower home alone or without your phone in reach. Build up muscle strength, mainly core and arms so if you do fall because your legs go out you can drag yourself and pull up your weight. Listen to your body. Walk as much as you can, and call me on the days you feel like down because of it.
I was a cosmetologist. Got my license in 2016 and didn't renew in 2019 because my symptoms were so bad I couldn't work in a salon. I continued doing hair for my family friends daughter BF and myself. Two weeks ago I did my last haircut and color because I can't stand up long enough or hold my arms up long enough without causing pain. I haven't been able to drive for months now because I can't tell how much pressure I'm putting on the petals. I gave up soccer and tennis a long time ago. Now I write, read, play Minecraft, and spend time with my daughter.
My life has changed drastically. Work is non-existent, I've had a couple jobs since the salon but they only lasted a few months before my SFN got in the way. My last job lasted almost a year and was an at home one which was perfect but they pushed me to quit almost a year ago because a Dr wouldn't send a release for work letter for my LOA. Since then I haven't been able to find anything. At home I do my best to keep a schedule but it gets thrown off a lot. Socially right now I'm pretty cut off since I can't drive. My mom and friends live 40 minutes away. They come over when they can, but it's not that often. I talk to some of the other parents at the bus stop but that's about it outside the house.

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?