Member Neuropathy Journey Stories: What's Yours?

@johnbishop I have always been pretty healthy, not getting sick much at all. I was diagnosed with cancer in 2012 and finished up my chemo and radiation in 2013. After about 6 months I noticed my left hand would go numb while I was driving and the left side of my upper thigh to my knee was numb. I went to a neurologist and she tested and said I had nerve damage but referred me back to my radiologist for medication. I took Gabapentin for 2 years but it didn't do anything to help me. In 2015 I went in for a small surgery on my right thumb and found out I had a left bundle branch block but no symptoms. The doctors said it was from my chemotherapy. My heart was only working about 25 percent. I had to have a pacemaker/defibrator. Now my numbness was on the bottom of my left foot. I felt like I was on walking on cotton balls. In 2019 I had a Pet Scan and they found a kidney stone lodged in the lower kidney at the opening of the bladder. They had to go in an get it instead of just busting it up. Tests showed my right kidney was doing almost nothing. Now my numbness was in the bottom of both feet and the last three toes on both feet. Usually I was just numb and didn't think much about it just tried to watch myself. One night I jumped out of bed and I felt like I was on fire in my upper left thigh. It shocked me how it hurt so bad I couldn't even touch it. Now it is tingling every day and working its way up my legs. I am 76. It has been a life changer for me. Can't run, get down on the floor to play with the grandkids and walk with a cane because it has affected my balance. I bought some reflexology shoes and they stop the numbness from going up my legs. I wear them 30 minutes every day or more. I am trying to walk everyday but can't walk as fast as I'd like. How long did it take to get some relief from numbness with the pills you are taking>

God bless you Rachel your symptoms open my heart to you and every one on the site. I just joined and are getting better answers here. Then the garbage im going through with doctors. It’s 2.00 am got my two hours of sleep for the night right leg pain brutal . Thinking of the trying CBD products in future myself . Bought RSD oil going to give it a shot for pain .

At the advice of my girlfriend, I’m taking a first step and at minimal, ‘connecting’ with Mayo and all of you (she actually wants me to get away from all of my current doctors and go to Mayo).

My journey began 1 1/2 years ago when I was diagnosed with SFN and plantar fasciitis (in both feet at the same time). Earlier this year, after having Covid/pneumonia, the SFN progressed and started giving me issues once again. This was after spending months during the initial diagnosis to find a medication plan that worked for me. My primary physician started making some changes in medication which seemed to be working and then about 6 weeks ago I started dropping things, getting headaches and experiencing dizziness and severe head rushes and ringing in my ears, along with decreased vision. I ended up going back to my neurologist and they indicated I was having migraines so they put me on a medication for that, and ordered a MRI, along with a balance and auditory testing. I failed most of the balance tests, which I start therapy for next week, and I have mild hearing loss (I’m 51), along with my ears not being equal/balanced for vertigo testing (whatever that means). I have not received results from the MRI back but an odd thing is that I have severe pain to the touch underneath the base of the back of my skull. Not sure if that means anything at all, it’s just weird and very painful.

So as with many, one just never knows where the journey will take you or if you will ever truly find all of the answers or ‘fixes’ you are looking for. For me, and my girlfriend, maybe Mayo is a next best step to helping figure some of this out if the local doctors can’t. My quality of life certainly has diminished over the past 1 1/2 years, but as I continue to tell family and friends, it could be worse.

Thanks for reading everyone!

Please explain what is SFN..?

I have had peripheral neuropathy for 30 years (I'm 71). It started from excessive bleeding caused by adenomyosis which was only discovered when I had a partial hysterectomy. It was described to me as having fibrous growths inside of my uterus tissue (as opposed to endometriosis but similar). Prior to the surgery I had extreme bleeding which caused anemia and my B12 tanked to near zero. My doctor didn't think to check for the B12 after the hysterectomy and it wasn't till later when I moved and had a new doctor that discovered the very low B12. I probably had this low B12 for awhile. I had B12 shots to bring the levels up and a naturopathic doctor set me up to give myself B12 shots from home. It took a long time to get my levels to stabilize on their own. I have written the rest of my story after my current efforts trying different things to help. It's been a long journey for sure.

CURRENT EFFORTS
My PN has progressed slowly. After a bit I had tingling in my hands and body trunk. These areas haven't really progressed but my feet have and I have some numbness. I work to keep my muscles strong and sometimes rub my feet to increase stimulation. I have to apply moisturizer as they do feel dry. I don't seem to have balance issues if I keep up aerobic and strengthening / stretching exercise. I also recently dropped 12 pounds as part of avoiding my pre-diabetes developing into diabetes. My diet is high in vegetables, beans, grains, some animal protein and eggs plus a little good fat and carbs. Sugar to a minimum--100 calories or less a day. I have about 6 oz of wine sometimes every night but sometimes only once or twice a week. I may cut that out too.

ALPHA LIPOIC ACID
I'm becoming concerned about increasing numbness and looking for alternative treatments. My neurologist suggested ALA which I have done for 6 months. It hasn't seemed to help me although it has really helped a friend. I've stopped it as most research suggests taking it for only 6 months though they don't indicate it's bad to take it longer. After the first bottle I starting taking the R version as that is more stable and therefore more effective in the body. I avoided any that contained Biotin. As a note, I recently had mouth sores--very unusual for me-- and wondered if the ALA was causing that. Research doesn't show it as a side effect. That's when I decided to stop the ALA though.

LOOKING FOR ALTERNATIVES
I think I'm experiencing a lack of blood supply to my feet as well as more dying nerves and am trying to find ways to help this. I do some self-massage of my legs and feet --- many years ago I went to Chinese foot massage practitioners and am considering that again. I may not have kept it up long enough when I tried it before. Has anyone tried this with success?

I'm curious about TENS or some kind of electrical stimulation. Research suggests it's for pain but I wonder if that kind of electrical stimulation might encourage neural growth. The neurologists have said that sometimes nerves can regrow--though very slowly. Anyone experience improvement with TENS or other electrical stimulation methods?

I'm willing to experiment.

THE REST OF MY PN STORY
Somewhere after the excessive bleeding/low B12 incident I started getting PN symptoms and later I was given a prescription for gabapentin. I started at 300 mg but have worked it down to 200. My diabetic mother took over 1000mg a day and I watched as she went from a small dose to this large dose without it really helping much. She took a dozen different meds and, though she lived to 96, her last years were not very good. I'm trying to keep from repeating that process.

My GP did send me to a neurologist who did testing and discovered I did have some nerve and feeling loss in my feet. That neurologist moved and the new one called it idiopathic neuropathy and said there was nothing to be done and it wasn't a very serious problem and he focused on people with more challenging issues. I never went back to him but 3 or 4 years later told my GP about the experience and she sent me to someone else. They did a lot of blood tests and ruled out any of the diseases that could cause my PN. My B12 and D seem fine now.

I am prediabetic but don't want to start any meds for that. Instead I have lost 12 pounds and am 135 at 5'3". For the last 6 months I have upped my exercise though I have generally been a hiker and have done Zumba off and on so would get some exercise. I do Zumba and a stretching class weekly as best I can and walk regularly.

Despite these efforts my feet are becoming more numb, more dry, less feeling. I do have very light tingling sometimes in my hands, legs, trunk. Time to up my game so I can enjoy my last few years! Thanks for any ideas.

Welcome @cboydb, Your neuropathy journey sounds eerily similar to mine that I posted at the beginning of the discussion here - https://connect.mayoclinic.org/comment/310341/ and is what initially brought me to Mayo Clinic Connect in 2016. I also have the numbness and some tingling but no pain other than that related to old age and degenerative arthritis being an almost 82 year old guy. I've also been in the prediabetes category most of my adult life but only started focusing on getting my weight down and working on eating healthier after searching for ways to slow or possibly reverse my neuropathy. I do feel that I have slowed down or possibly stopped the progression but I continue to look for other ways to reduce the numbness. I still have it but it hasn't gotten any worse since 2016 which is a win for me.

I do think it's great that you already are working on fixing the prediabetic condition. I think there may be a connection to that after I started looking more into a reason for my diagnosis being idiopathic - small fiber peripheral neuropathy. Anything you can do to get out of the metabolic syndrome category is a win. Here's some information on how it is connected with neuropathy - The Metabolic Syndrome and Neuropathy: Therapeutic Challenges and Opportunities: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3881591/.

Have you seen the Foundation for Peripheral Neuropathy site? - https://www.foundationforpn.org/living-well/

MY POST-SURGICAL NEUROPATHY STORY

Hi, I'm Gail and new to the group. This is my neuropathy story. In May 2022, I had surgery to repair my mitral valve (a congenital defect). Despite the chance of serious complications being less than one percent, that's where I landed. Long story shortish, the right side of my heart didn't restart fully and I had to be put in a medically induced coma and on life support (ECMO and balloon pump) to recover. That was followed by multiple serious complications including pneumonia, sepsis, and the repaired valve became infected. They replaced the valve and waited while my heart regained strength so I could wean off ECMO and eventually, the balloon pump and RVAD (right ventricular assist device).

I was in the coma for about three weeks. My muscles atrophied to the point I couldn't lift a finger to press the nurse call button. Thankfully, my husband was by my side throughout, as much as he could be. I had to learn to walk again. When I regained consciousness, I noticed a tingling numbness in my feet and lower legs. They weren't certain about the cause, but the speculation was that while my body's vital organs were fighting for life, the periphery gets neglected out of necessity, causing the neuropathy due to lack of blood flow to those areas.

MEDS
Initially, I was on Gabapentin, going up to a very high dose. After a number of months, I weaned off the Gabapentin slowly, and didn't notice too much, if any, difference and I'm now on Duloxetine. I can notice if I take a pill late, so I think it's helping.

COMFORT LOTIONS
The lotions and balms I've found most helpful are Earthbound Remedies CBD Relief Balm (6000 mg full spectrum CBD), Doterra Deep Blue rub, and Sweet Bee Organics Sweet Sleep Magnesium Butter (original lavender). Nothing gets rid of the discomfort, it's 24/7 although luckily I'm not "aware" of it all the time, like when my mind is otherwise occupied or I'm doing something. But, all of these take the edge off, relieve some discomfort and pain, and are comforting.

SCENAR THERAPY
The other HUGE help I've found is called SCENAR therapy. When I realized I'd had the neuropathy for over a year, I started doing some research to see what else could help me. I was fortunate to come across SCENAR and a practitioner in my area. It's FDA approved, widely used in Europe and Asia, has been around since the 1960s or so. It was invented in Russia and was sent into space with the Cosmonauts. It's been improved upon ever since. Unfortunately, it's not widely available (yet) in the U.S. and not covered by insurance. I hope this changes with increased awareness.

It's electostimulation, not painful (a little sharp at times, but they can dial it down). If you've heard of TENS used in physical therapy, it's like that but many many times more advanced. From my first session, I was surprised to feel the ground beneath my feet more than I had since the hospital. Early on, I had more flexibility in my ankles and toes and heard my ankle 'crack' for the first time since. The extreme discomfort I had in socks and especially, shoes, subsided. The intensity of my numbness, tingling, occasional sharp, shooting pains, decreased over time and a number of sessions by at least 50 percent, I'd guess up to 70 percent. I'm planning to return for more.

I'm still hoping that it goes away completely at some point. I'll read more of what you all have to say. I know it will depend on why we have neuropathy. I'm lucky to be alive and I consider all of this bonus time. But, since it's OK to complain a little, it is frustrating, at times, feeling trapped with these sensations. My balance isn't as good as it was. I've slowed down, but still keep very active, doing my arm and leg PT a few times a week at our gym, and cardio machines like the treadmill and bike, walking outside and yoga. I feel that yoga is a necessity to keep my flexibility. Walking outside helps me in many ways. I feel better being in connection with nature.

I look forward to reading your stories and what helps you. Let me know if you have any questions and I'll do my best to answer. I'm sorry you're dealing with neuropathy. I'm glad to have found this group to connect with you. Hugs. (I'm 60, which is so odd to write)