Anyone here dealing with peripheral neuropathy?

Hi, 30 years, has now taken over my life the last 4 years. Are there any new findings to help with progression and pain? Thanks, Jackie Franceschini

Hi Jackie @jackieorr, Welcome to Connect. It can be difficult living with neuropathy and worrying about what the future holds for us, especially the progression of the condition and worsening of the symptoms. It's really good to see that you are wanting to learn more about the condition and the research. Here are two of my favorite sites to learn about current treatments, living better with the condition and research being done.

--- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/living-well/
--- Neuropathy Commons: https://neuropathycommons.org/neuropathy/neuropathy-overview

Here are some discussions that might be of interest:
--- Contributing to Neuropathy research - Stuff That Works: https://connect.mayoclinic.org/discussion/getting-involved-in-hopes-of-finding-help/
--- Scientific research and scholarly papers on Small Fiber Neuropathy: https://connect.mayoclinic.org/discussion/scientific-research-and-scholarly-papers-on-small-fiber-neuropathy/.

I shared my neuropathy journey in another discussion here - https://connect.mayoclinic.org/comment/310341/. Do you mind sharing a little more about your diagnosis and symptoms that bother you the most?

Hello, Jackie~
Sorry to read about your suffering.
This is really for the whole nation of folks dealing with the nightmare of PN.

I've been having my own battles with it and can "feel your pain".

I have gotten some relief from my vibration platform. Sitting down and just placing my feet in the walking mode space (lowest Galvanic) really feels good and that feeling of vibration lasts for a long time. I feel that anything that can get our blood way down there to the tiniest of capillaries is a good thing.

Buyers beware though...some of these EMS pads are priced over the moon...check it out though. I haven't seen any mention of EMS for PN on any of the threads.

Best to you all. Bunky

I am being treated by a chiropractor for neuropathy in both feet. I am not diabetic. Treatment involves infrared light treatment, electrostimulation, foot vibration, and mega supplements. This is a long process to repair nerves in your feet. Months. My feet have improved a LOT. No more needles, hotness
Still tingly but I can feel my feet again. You just can't give up. All this was not cheap, but it is working. There really is no other way. Traditional medicine has no treatment or relief , only drugs to mask the symptoms. And they don't work very well if at all, eg Lyrica.

Yes..Started, well at least when I noticed it was January 2023, I suspect Covid as I had it Aug 2022 has caused this there is no other reason since I don't have diabetes.
I've tried everything and everything helps to some degree like
R-ALA
Turmeric
Primrose
Nitric Oxide (circulation) and other circulation herbs
Magnesium
Super B complex
B3
Benfotiamine
Omega
Vit E
D3 + k2
Foot rub/roll-ons
Capsaicin...doesn't work for me
I like the Lidocaine 4% roll-ons the best I use it at night to also helps with restless legs (I put it on my feet)
and I put on my feet before work
Prescriptions
Lyrica seems to work to a point also I hate taking prescriptions so I only take it at night for restless leg or I'll never get any sleep... not every night, Trying to use Primrose instead
If I take to much ..like 300mg a day it makes me goofy/ and balance is a problem so I keep it at 75mg at night when needed
Gapapine(sp?) didnt work as well

At work, my feet start hurting at 1500 steps.. but I think with what I'm taking they recover faster than if didn't take anything.
The worse thing you can do is stay on them after they start hurting... then when you finally get off them the pain is a 10... that's when I have to lay down for like 10mins, if I take breaks...they recover fast and I'm up a moving again..the painless times gets shorter as the day progresses.
It's like they recover overnight(not totally of course) but as I pound on them walking in my job they get more and more sensitive...
My Thoughts:
Could it be circulation related my feet do get purple in spots when the pain comes
Could it be covid related(not shot, I didn't take it)
Will this get worse to the point I can't work?? I'm already a less helpful spouse around the house and yard
Is it worth going to a specialist??? because I think they are probably going to push more drugs at me...
Acupuncture??
One last thing... I play guitar and I feel it in my palms after playing...
Lost........

Oh my, I feel your pain in every word you write. I have gotten to the point at times when I have been bed ridden or must use a wheelchair. I too do not have diabetes. I do have fibromyalgia. But still no one k ows what has caused the peripheral neuropathy. I am not overweight at all. I have had covid twice but had the condition before the covid. The restless legs are unbearable. I scream myself to sleep at times. I too take Lyrica. I am an author and I can pick at the keyboard with one finger. I however unlike you have pain management. I take a little percocet but it helps temporarily. People in chronic pain, I feel, are being undertreated because of the drug crisis with the population on general. It's very unfair. No one is being helped now I believe unless you are dying. Well I do what I can. I am in pain 24/7. I understand why fibromyalgia sufferers choose to end their lives. That's not me. I have an exciting profession with a distinguished publishing house, so I will continue on despite the pain and pray that eventually the medical profession will "wake up" and treat this chronic pain . Take us seriously please doctors!!!!!

Hello @mrsmoscowjones and @casd57, Neuropathy can definitely be a struggle for all of us and a positive attitude and learning as much as you can about the condition and treatments that are available is one of the best things we can do to advocate for ourselves. Believe it or not there are doctors out there that care and are working to change the healthcare system. Check this site out - https://www.patientrevolution.org/tools.

@casd57, You asked if it is worth it to go to a specialist. Not sure anyone can answer that for you. If it were me, and I didn't have a diagnosis, yes, it would be worth seeing a specialist to find out the cause and what treatment options I have including prescriptions and non-prescription options like lifestyle or other changes I can make to improve the condition or reduce the symptoms.

@mrsmoscowjones, It sounds like you have figured out what you need to do to minimize the pain and disruption and are able to continue doing what you love. Do you have any tips or techniques you can share?

Yes for about a year now

Yes, for about a year now also. I've tried accupuncture with MD and it seems to have helped a little but it is not gone. The good news is that it is just in my feet and it does not really hurt, its just a bother.

I'm going to be 82 years old. I ended treatment for breast cancer about 2 years ago. The Taxol dealt me a blow!
I was left with peripheral neuropathy in my feet and I had to stop driving. My feet felt absolutely dead and I had shooting pains that felt like electic shocks.
What I found that seem to contribute to my feet feeling better,is gabaentin 300 mg, 3 times a day and the Voxxlife patches. They help me with the numbness and shooting nerve pain, as well as my balance. I use the Liberty Patch.
I live alone on 22 acres 8 miles from town. My son comes out a couple days a week to help me. Life is good!