Living with Neuropathy - Welcome to the group

Wow! Someone else out there understands that my neuropathy is NOT due to being diabetic! Unfortunately, I have been reduced to wearing mostly tennis/walking shoes with a thicker sole. Not too fashionable most of the time. I also wear orthotics and my shoes need to accommodate them so I need shoes with removable insoles. BTW I am a young 64. Barbarn, hope this helps??? 🙂

OMG!! Me too! Not diabetic. Have sfn. numbness, pain, cramps, the whole freakin shebang. I am 54. My shoes are also very not fashionable, so much so that they have earned the nickname 'frankenboots'. They are new balance that also have cushioning and are sized to fit orthotics as well

Hi @katrose, I would like to add my welcome to Connect along with @barbarn and others. I also only have numbness and no pain with my neuropathy. My diagnosis was idiopathic small fiber PN but the neurologist thought it was probably hereditary. Shoes really help with the balance. The neurologist broke my bubble when he told me there isn't anything that helps with the numbness of neuropathy. That and I've tried about every topical available with no success. I do take some supplements and vitamins that I believe have stopped and slightly reversed the progression of my neuropathy in my legs - started in the toes and was just below the knees when I started taking them in Sept 2016 and by Dec of the same year the numbness was just above the ankles. I still take the supplements and vitamins but have made no more progress since. The numbness is still just above the ankles...and that's a little subjective on my part. I still consider it a success since the neurologist told me it would continue to get worse until it impacted the autonomic nerves.

Before I was seen by a neurologist my primary care doctor prescribed gabapentin for me also. I took it for about two weeks and called her and told her it wasn't working. She discussed it with her colleagues and they chatted with me for about 5 minutes and said it only works for pain not numbness. That's when she setup an appointment for me with a neurologist after scheduling an EMG and a few other tests.

I have been thinking about low level laser therapy (LLLT) and near infrared sauna therapy but I'm still trying to decide on it.

One thing I've found that made the feet feel better was wearing bamboo thread socks - really soft and comfortable and very easy on and off because they are stretchy. Bummed out that I can't use them anymore since I was diagnosed with lymphedema and have to wear compression socks. Taking those off at night really makes the feet feel good ☺

The Foundation for Peripheral Neuropathy has some great exercises to help those of us with balance and more...

Exercise + Physical Therapy For Neuropathy
-- https://www.foundationforpn.org/living-well/lifestyle/exercise-and-physical-therapy/

@katrose have you found anything that helps a little?

John

Hi John, thank you for your reply.
I just started taking gabapentin 2 days ago and I was/am hoping for the best. I have two friends who also have neuropathy and they both say gabapentin/neurontin helps a little with numbness. I do not have shooting pains often associated with neuropathy. My doc told me that if it does not work, just stop taking it. Note that my doc is a DO and she has suggested doing tests to check for toxins, etc. However, since my condition is hereditary, I cannot think these tests will work for me. I do exercise and try to stay active.
I have not heard of LLLT or infrared sauna therapy before.
What supplements and vitamins do you take? Taking a drug (gabapentin) has been so far a last resort for me. I am just so frustrated at not finding something that will help.
There HAS to be something out there...............:)

I have had no pain. For the cramping in my legs, I stretch and try to be active but find I cannot walk as fast as others! I also wear NB, Ryka, Easy Spirit, anything with lots of cushioning plus the orthotics.
The odd thing about this neuropathy is that I did not even know I had it until I was in my early 50's. My podiatrist thought it was plantar fasciatis (sp) hence the wearing of orthotics. The numbness started being apparent about 3 or 4 years ago and just progresses I guess. Bummer.

Hi @katrose, I found the supplements I take in a closed Facebook Group. They also have a website with a link to join their Facebook group. It's not a cure for PN but it does provide a natural solution that addresses what the body needs to help the nerves vs what the brain needs to stop the pain (IMHO). It hasn't totally gotten rid of my numbness but it has helped stop the progression so to me that's good enough. It may or may not help but it won't hurt you like some of the drugs for neuropathy. You can read my story in an earlier post here - https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

The group which is also now a 501c3 organization has a website here- http://solutions2pnpd.com/ It doesn't cost to join, read and learn what they are all about before making a decision to try it. It's all over the counter vitamins and supplements. I ran them by my doctor and she had a Mayo pharmacist look at them but the only thing they said was they thought the omega 3 were a little high but that's about it. It's always a good idea to run the list by your doctor if you are taking other meds.

Low Level Laser Therapy Notes/Posts from other members and SaunaSpace.com which is what I've been thinking about.

Felix @swiss
-- https://connect.mayoclinic.org/discussion/in-search-of-relief/?pg=1#comment-130717

@holhealthcare
Can Low-Level Laser Therapy Have An Impact For Small Fiber Neuropathy?
-- https://www.podiatrytoday.com/can-low-level-laser-therapy-treat-diabetic-peripheral-neuropathy

Near infrared therapy - SaunaSpace
-- https://saunaspace.com/articles/

Hi John, thank you for your information. I do not subscribe to Facebook so that is out. I will check out the supplements. I imagine they consist of B vitamins and perhaps alpha lipoic acid and as you mentioned omegas. Just perhaps I have not taken the required amout of each of these at some point. Will keep trying to find some sort of solution. I will also check out the laser therapy......just see if it has helped anyone.

Has anyone out there tried accupuncture for neuropathy numbness??

Yes, I had 14 sessions of acupuncture with a Chinese family practice physician with a background of acupuncture skills. I received no relief. I have found no relief from idiopathic PN........having tried 8 or 9 meds and cannabis. Side effects always occurred before any pain relief. I have now quit searching,have purchased a power chair and am living with my PN. I am 90 years old and am in otherwise good health.

I have not tried it but there is some research that supports it's use.

Acupuncture for the Treatment of Peripheral Neuropathy: A Systematic Review and Meta-Analysis
-- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5359694/

Introducing a Standardized Acupuncture Protocol for Peripheral Neuropathy: A Case Series
-- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5733739/