Living with Neuropathy - Welcome to the group

@straightway22
That's what my Neuro believes too. I took it for at least 30 years. Do you Epilepsy?
Jake

No ! Am trying to help people! May not work for everyone! I’ve had shots, gaba, surgery etc! Nothing has helped just a little bit! Go to you tube and listen! It is working for me! You can’t overdose! If you do you will just throw up!

I've had peripheral neurpathy for over 10 years now !
I've been to too many doctors than I want to think about who told me that they could stop my pain in my feet and toes !!?
Everyone one of them couldn't help my pain !
I to had a nerve stimulator implanted in my lower back over a year ago and had it taken out today ( 1-30-2020 ) !
I'm not giving up, still looking for a doctor ?

You should research red kratom!

Go to website. Reddit

Hello @straightway22, welcome to Connect. Sorry to hear that you fell and also have peripheral neuropathy. I also have no pain with my neuropathy but I do have balance issues like you. There are some exercises you can do to help with the balance issues. There is a discussion that you may want to read through and see what others have done to help their balance problems.

> Groups > Healthy Living > Having trouble keeping your balance?
-- https://connect.mayoclinic.org/discussion/having-trouble-keeping-your-balance/

Have you looked at any different therapies or exercises to help with your balance problem?

@seniordon09 @straightway22

I had a Burst DR spinal cord stimulator implant in June, 2017, and it has made a significant improvement in the neuropathy pain in my feet. More so the first year. Now I need to have it adjusted every 3 months, but it does still continue to improve my pain. I have small fiber idiopathic peripheral polyneuropathy and the beginning of autonomic neuropathy. PN accounts for the pain and numbness and tingling in my feet and elsewhere. Signs of autonomic neuropathy include (possibly) diplopia, esophageal dysmotility, silent reflux, ED, balance, sudden temporary knee muscle loss, who knows what else.

I've tried a very long list of medications, beginning with my PCP, then neurologists, and pain specialist. I'm taking Imipramine now, and it's the first one that has helped with the pain without unacceptable side effects. I wish I could say that my feet don't hurt, because they do, depending on my activity. It would be so, so good to be pain free for a day!

I was being treated for clinical depression, anxiety disorder, PTSD and suicidal ideation several years before the pain started. When I began feeling first numbness and tingling, then a couple of years later the burning pain, it set me back to deeper depression. Pain and depression fuel each other for many people, including me. So, not only would it be possible to be pain free for a day, it would be great not to have mental health issues for a day.

Finding the right treatment for neuropathy can be a very long process, unless you chance to hit upon the right medication right off the bat. I wish you well. Hang out here in the Connect group and see what has helped others in your shoes. We're always sharing ideas, as well as searching for answers.

Jim

Hello
I'm new to the Group. I was recently dignosed with
peripheral neuropathy. While at the doctors for my test results and told I have peripheral neuropathy,
I left my doctors office last week realizing she said absolutely nothing to me about my new dignose? ( I don't believe she understands how bad my life has become)
I have no idea what kind of doctor to see, what this is caused from, will it ever get better and so many more questions left unanswered.
It's gotten so bad that I can only lay on my back at night to sleep because trying to sleep on either side causes so much hip pain that's become unbearable. My biggest worry is, when I wake-up because it's become a point that I'm unable to walk.
Can anyone help me out with some
Ideas of a specialist I should see, what others may be going through or any helpful ideas?
I'm really worried that one day I'll be unable to walk. I started myself on a high dose of vitamin B12 and a calcium vitamin. Anyone's input would be so welcomed.
Thank you
All so much
Ruth From Florida

Hi Ruth

Welcome to Connect. You will see my response earlier to a newly diagnosed member. Well, same thoughts are for you. It really does suck and is unfortunate ...the way we need to fend for ourselves with this disease.

I need to sleep in my recliner 50% of the time for pain reasons like yours. It's not fun waking up feeling like you've been hit by a train

My fears of not walking one day are the same as yours and I understand how much negative thoughts can consume the mind.

My best advice is to take each day as it comes, as hard as it may be to stay in the moment. Learn as much as you can about the disease. Understand that each persons case will be unique to them. Keep connected and talk about what you are going through.

Wishing you the best. Take care
Rachel

Hi Ruth, another Floridian here. Just one thought for you-did your bloodwork she a deficiency in B12 and calcium? The first neurologist I had gave me an RX for a 'super B' type vitamin. He never did bloodwork. I took it for about 5 days and my pain got worse because I didn’t need the B6, my primary dr. then did bloodwork so I know now I did need B12.