Living with Neuropathy - Welcome to the group

@okaynowwhat Wow! I am so sorry!

Dear Carmen. I suffered rt side Trigeminal neuralgia some 18 months ago. Caused by playing a lot of sax as an 82 yr old. Dentists found all teeth ok even though gums were painful .
Dr diagnosed trigeminal. . Mine was the middle nerve, maxillary. Prescribed dangerous cabamazepine. Then found turmeric as good with less potential liver damage. By accident all symptoms disappeared
after lifting a 20 kg bar from floor to chest several times every other day. Neck muscles were strained. Jaw muscles are an extension, so they became reconditioned.
Playing sax again. All well. I do now take B12 and turmeric daily.
You might like to try lying on your back and hold your head up to strain neck muscles.
James NZ.
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Forgot to add, trigeminal neuralgia is when a vertically rising artery on outside of brain is rubbing against the horizontally crossing nerve. The rubbing can be from blood pulsing or jaw movement from playing a wind instrument or both.
Alcohol reduces B12 . B12 makes myelin, that's a fat that coats nerves. Have given up ALL alcohol.
Good luck.
James.

@kevinking funny enough, a couple of red wine and night, and a joint, has been working for me

Hi, I'm Shirley. In 2022 I was in the hospital for 4 months and a rehab center for 2 months. I had a hernia removed in my stomach and I got septic. I ended up having 7 surgical procedures on my stomach and the nerves were damaged to the point of me not having any pain from the surgeries. One day when I was in the rehab center I started feeling this burning excruciating pain in my feet when the sheet would touch them. That lasted for 4 days, then it went away. Now my feet and hands have started tingling and going numb. Yesterday I had a stabbing pain in one foot and couldn't stand for about 5 minutes. I'm not interested in taking medicine just to mask the pain. I want to get to the root cause of the problem.

@sbrown1953 Don't we all! If only docs would be willing to take the time to deep dive into our pain and come up with a plan...like they do on the TV medical shows.

Hello @sbrown1953, I would like to add my welcome to Connect along with @heisenberg34 and others. Probably the best thing you can do for yourself is to learn as much as you can about your condition and what treatments are available that might offer some relief. Connect is a great place to learn what others have shared that helped them. To be honest, for a lot of us with "idiopathic" neuropathies it's a challenge to get to the root of the problem. I shared my neuropathy journey in another discussion here - https://connect.mayoclinic.org/comment/310341/.

Another good resource is the Foundation for Peripheral Neuropathy - https://www.foundationforpn.org/living-well/.

Have you looked into any alternative therapies or other treatments?

I’ve said it, and continue saying it there is NO CURE FOR … CIPN. But after Prostate and Stage 4 Lung Cancer (both are Gone) I feel Lucky and fortunate to be ALIVE. Sure I need a Walker and or a Cane to get around but I do it! The Doctor (or Person) that finds a Cure for CIPN ….. I want to the first person to ride on their New Yacht (150’) Hahaha. Anyway GOOD LUCK to ALL
Dave D.

@sbrown1953 Hi Shirley, I've told my story before the Robbie thesis since 2010 mild all the way up to 2000 24 got real bad. I was feeling toes weren't able to move up to my shins in numbness no reaction to the neurologist stabbing my leg or feet. Stopped eating sugar plant based broccoli fruits apple orange banana every day lost about 40 pounds I was 50 lbs overweight. Amazing energy still have a little stabbing pains in my feet and my fingertips Not sure what to do about that neurologist just wants to be on more meds tried them all gabaplatin, lyrica and now I'm on Cymbalta 60kg a day which I'm going to get off Just haven't got the guts to just stop taking it. And my neurologist who has been around a long time said yeah you can just stop if you want

Hi I was told to check into forums to see if I might be able to get some ideas that may help because I've tried everything I know of. I have neuropathy in my feet and legs and I can no longer walk so it's been more then rough.