Living with Neuropathy - Welcome to the group

Hello, @dianecostella I've had esophogeal dysmotility for several years. (I also have mild autonomic neuropathy, but severe idiopathic axonal demylenating small fiber polyneuropathy - quite a mouthful.) I had a few appointments with a speech therapist, who gave me some exercises and a list of helpful hints about swallowing safely. It can be pretty annoying, and sometimes even scary. I'd recommend a visit with a speech therapist as a first step. Don't be put off by the title, "speech therapist". She was a good specialist who explained things well, referred me for a few swallowing tests, and provided resources. Some days I don't even think about it, but I guess that some of the things she taught me have become automatic. I take smaller bites, chew very well, avoid foods that are problematic, and wait until I've swallowed food completely before taking another bite. It used to help get food all the way through the lower esophogeal sphincter if I chased it with a sip of liquid, but now liquids can be as risky as solids. I drink small sips, first taking a breath, sip, hold it in my mouth, tuck my chin, then swallow. More often than not, if I forget to tuck my chin, especially when I'm drinking the last of the liquid, I start to aspirate, and that sets off a coughing spree. Fortunately, I've never actually blocked my airway, but I know it happens.

Can you ask your doctor to refer you to a speech therapist? I'd be interested to know of any coping strategies you've tried. Isn't it frustrating to see our bodies misbehaving? If you want me to say more, be sure to put my name, with the @, in the text of your message - @jimhd.

Jim

I have a wacky question- has anyone here with PN gone to a waterpark? I’m taking the grandkids to an indoor one and am wondering if I should try the water features or play it safe and cheer from the sidelines. Wondering if the force of the rushing water would “stir things up” with my lower leg neuropathy- pain? cramping? the upgoing toe?

I am Mr.Iqbal from Pakistan,70 year old,sugar and heart patient for last 30 years ,got GABG in 2009.Now feeling feet burning situation in night time which disappear within 3-4 hours automatically.
Now I have started taking Vitamins B-Complexes (B-1,B-6,B-12) Vitamin E & C.
Can any body advise about food which can reduce my this disease.

Hello @iqbal1951, Welcome to Connect. I also take supplements to help with my neuropathy. I shared my story in another discussion - Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/comment/310341/

The Foundation for Peripheral Neuropathy has some good information on nutrition that you might find helpful along with what to avoid -- https://www.foundationforpn.org/living-well/lifestyle/nutrition/. They also have a webinar you might find helpful -- Webinar: Nutrition for Patients with Peripheral Neuropathy: https://www.foundationforpn.org/webinar-nutrition-for-patients-with-peripheral-neuropathy/

You mentioned having GABG in 2009. I'm not familiar with the acronym. Can you tell me what it is?

Has anyone had any success using spinal cord electrical stimulation to treat pain in the rectal area? The pain resulted from rectal surgery, which removed the anus.

I'm an 82 year old woman in relatively good health with a mostly positive attitude except when I feel sorry for my self. Darn!..I have neuropathy in my feet and mostly lower legs. They used to just burn horrible. Lyrica, pregabilin, has helped the burning. Now it feels like I'm walking on gravel and have the pins and needles and sharp pains in my feet and legs off and on. I wear compression hose that gives some relief. Walking seems to help, but it is horrible to just be standing still. Very hard to cook with standing still. It seems to have gotten worse with the cold weather in MI. My left side is the worse as I have an arthritic knee and bursitis in hip. I had a neurology test and some of the pain comes just from damaged, old, nerves and some comes from my spine.
I just want to continue living the best I can with the least amount of pain. My little terrier cheers me up. Any suggestions on how to do. this would be appreciated. I was a teacher and was upright during most of my assignments. LOL. Loved it!

Welcome @fredamm, to Connect. I think I walk iin your shoes. I will be 80 soon and have SFN, small fiber neuropathy. I can identify with your frustration with the neuropathy cards you have been dealt. it seems like you have experienced both the burning and the tingle-tangles, (my words for pins and needles.

i agree with your assessment of trying to cook with neuropathy. I need evidence to keep me out of the kitchen. I think we share some other life elements. It is cold here in MN also. And with low barometric pressure, I deal with what I call "heavy pain". Oh....and I am very jealous of your little terrier. I have had three Cavalier King Charles Spaniels........my.real joy in life.

Are you satisfied with your medication? I also have bursitis in my hip. An injection of cortisone seems
to help every six months or so.

I also agree with your goal at this time. Let's just live the best life with the least amount of pain. A few years ago, I decided to not get caught up in opioids for pain. I used compounded topicals until they began to let me down. With the help of a nurse friend, I was introduced to medical cannabis. At this time I use topicals and tinctures for pain control.

I am sort of wondering if you have enough to keep you busy after being a teacher. (Just teasing) What grade or specialty did you teach? Have you taken a look at Mindfulness and Meditation? They help me so much.

What questions do you have? We have so many helpful members.

Chris

Hello @fredamm, I would like to add my welcome to Connect along with @artscaping and others. Having a mostly positive attitude is a good thing when you have neuropathy. Truth be known, it's a good thing even if you don't have neuropathy 🙂 The cold weather makes my symptoms worse also but mine are mostly numbness and the cold hands and feet. I wear compression socks also to control the swelling in my legs from lymphedema. Pets are great to keep us cheered up. I shared my neuropathy story in another discussion here - https://connect.mayoclinic.org/comment/310341/. I'm not sure if you have seen the Foundation for Peripheral Neuropathy website but they have some good tips on living well with neuropathy that you might find helpful.

-- Living Well: https://www.foundationforpn.org/living-well/

One of the things that I think helps me is to eat healthier and doing some mild exercises every day. Do you have any activities you enjoy doing that takes your mind off of some of your symptoms for a little relief?

I had the same problem with standing still due to neuropathic pain in my feet. I purchased cushioned mats from Kohls.com and placed one in the kitchen and one in front of the bathroom mirror. These mats are similar to those used by cashiers. There are many styles and colors.

Pls message re: the Mega benfototiamine and Optimized Carnatine, where do I get it? Thanks.