Living with Neuropathy - Welcome to the group

Posted by Colleen Young, Connect Director @colleenyoung, Jul 14, 2017

Welcome to the Neuropathy group.
This is a welcoming, safe place where you can meet other people who are dealing with neuropathy. Let’s learn from each other and share stories about living well with neuropathy, coping with the challenges and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by volunteer patient Mentor John (@johnbishop) and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself? What concerns would you like to talk about?

Interested in more discussions like this? Go to the Neuropathy Support Group.

Chris Trout, Volunteer Mentor | @artscaping | Jul 24, 2017

In reply to @wellness3070 "Anxious to discuss peripheral leg neuropathy and treatments." + (show)

Hi, I use a prescription cream from a compounding pharmacy. It has 3 ingredients.: lidocaine, pilocaine, keptoprofen. My neurologist just made it stronger to handle more severe "needles" in my hands and wrists. It takes the edge off, especially at night for sleeping.

John, Volunteer Mentor | @johnbishop | Jul 24, 2017

In reply to @mfobrien36 "I'm posing a question regarding symptoms experienced by a close family member who has PN... which..." + (show)

Hello @mfobrien36 - it sounds like it could be neurodermatitis. Mayo Clinic website has a description and picture here:
http://www.mayoclinic.org/diseases-conditions/neurodermatitis/multimedia/neurodermatitis/img-20008675

I have some rough scaly skin around my ankles but it doesn't look bumpy like a burn and it's not painful. Has they talked with their doctor about the patch of skin? If not I would recommend it as soon as possible.

John

Mary | @mfobrien36 | Jul 24, 2017

Yup, doctors have been consulted and so far, no info. Thanks for the lead website, John. Will forward it on.

yoda | @yoda | Jul 24, 2017

I'm Hugh, new to this group, joining because they tell me I have peripheral neuropathy. Having been to Mayo for the 2-day Pain Rehab event, I am impressed by Mayo and interested in this group. I hope to be useful, and to be informed and advised.

mikween | @mikween | Jul 24, 2017

In reply to @wellness3070 "Anxious to discuss peripheral leg neuropathy and treatments." + (show)

HI @penadr, what does lidocaine patches do for neuropathy?

mikween | @mikween | Jul 24, 2017

In reply to @wellness3070 "Anxious to discuss peripheral leg neuropathy and treatments." + (show)

Testing

Colleen Young, Connect Director | @colleenyoung | Jul 24, 2017

In reply to @yoda "I'm Hugh, new to this group, joining because they tell me I have peripheral neuropathy. Having..." + (show)

Welcome Hugh (@yoda),
Do you know what that cause of your peripheral neuropathy is? What was the most important thing that you learned during the 2-day Pain Rehad event that you'd like to share with the group?

John, Volunteer Mentor | @johnbishop | Jul 24, 2017

In reply to @yoda "I'm Hugh, new to this group, joining because they tell me I have peripheral neuropathy. Having..." + (show)

Hello Hugh (@yoda), Welcome to Mayo Connect, we are happy you joined us. Can you share a little bit about your diagnosis or do you have any questions you are trying to get answered?

I found this group in March of last year when I was searching for a neuropathy support group. It is a great place to ask questions of others that share health issues similar to yours.

John

Penadr | @penadr | Jul 24, 2017

In reply to @wellness3070 "Anxious to discuss peripheral leg neuropathy and treatments." + (show)

They help with specific pain. I cut them to the size I want & put it over where my pain is. I think they help. I've even wrapped them around my toes. I rarely use them during the day because I don't want to over use & they don't always stay on. When I first tried them, my doc supplied them because of the cost. They are generic now.

Mary | @mfobrien36 | Jul 27, 2017

Don't laugh... I may have hit on something by accident that might help some of you. Most nights I use a foot cream on my "neuro-pathetic" feet just to keep them soft. I have the type of neuropathy that causes me to feel everything; for example - I can't stand on the bathmat in my tub/shower as the little nubs really hurt. I get sharp, shooting pains in my toes and it wakes me up at night several times. I've tried gabapentin - didn't work at all! SO... the other night, I picked up my Ben Gay - by accident - rather than my foot cream and before I realized my mistake (how'd you miss the smell?) I had rubbed it on my foot and ankle. It felt kinda good... so I rubbed it on the other foot. I slept through the night. The first time in many a month. I thought this likely was a fluke, but decided last night to try it again... it worked again and today both feet feel some better. Usually, night time is when my feet bother me most so I was delighted. Don't know if it is a fluke or not, or if the Anti-neuropathy fairies have visited me while I sleep (I'm Irish so it could happen) but it seems like a cheap thing to try. I know it sounds goofy but if putting a bar of soap between your sheets wasn't considered too "strange" a suggestion - maybe this might work for somebody besides me. I doubt whether it would work on feet/ankles etc. that have open sores, though... that might really hurt.