Living with Neuropathy - Welcome to the group

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.

@pfbacon

Gabapentin and Lyrica help with my feet burning. When they are wearing off and my next dose is due in an hour or so, my feet/toes start to burn again, and they burn for 1/2 an hour or so until the gaba/lyrica takes effect. We all seem to be a bit different in this complicated condition that we have but it helps me to know what others are doing -- I'll try anything. Peggy

Jump to this post

Thanks Peggy, I've tried both Gabapentin and Lyrica. Neither helped with my burning, and both screwed with my speech really bad. Like my Dr. said, they both work on your body by screwing with your brain. He didn't like the results either given that, for me at least, they didn't work. Like you though, I'll give anything a try. I've even thought about giving tryrevitive.com a try. It's a full money back including return shipping device.

REPLY
@lisalucier

Hello, Neuropathy group members: just wanted to let you know that someone you've gotten to know in this group, @johnbishop, is featured along with two other Mayo Clinic Connect volunteer mentors in a newsfeed post today. The post includes video of John talking about how he found Connect after his diagnosis of small fiber neuropathy, and how he enjoys giving back to others by sharing from his personal experience and research. Please come check out the post, play the videos and make a comment. https://connect.mayoclinic.org/page/about-connect/newsfeed/connect-sharing-strengthens-us-and-others/

Jump to this post

@johnbishop you rock! I have autonomic neuropathy with voice, balance, bladder, and blood pressure issues, and am especially appreciative of the depth of the research you do in providing links to all kinds of useful information. @lisalucier thanks for sharing John's video!

REPLY

@elizabej, Sorry! I couldn't help myself showing my coffee cup that I purchased in 1965 in Yokuska, Japan. Thank you for the kind words. Connect is my favorite volunteer job. I love helping people learn how to be an advocate for their own health...learn, learn, learn ☺

REPLY
@lynnejoy

Hi this is my first post so please bare with me . I have got peripheral neuropathy and suffer numb feet and pain in my heels and calves and now I’m getting the pins and needles sensation in my right hand and worry it’s spreading . My GP is not doing much for me , I’m on pregabalin 100mg in a morning and same in the evening . He has just given me an extra tab 50mg to take in between which isn’t doing much to be honest . Iv now read about and been recommended CBD paste and decided I’m going to try this . Just wondered if anyone else has tried it and thoughts on this please ?

Jump to this post

Hello @lynnejoy, welcome to Mayo Clinic Connect. Thank you for posting...it's a good start to advocating for your own health. I have idiopathic small fiber peripheral neuropathy. It's mostly in my ankles and feet and I've had it for 20+ years. I only have the numbness with my neuropathy and that's bad enough. I know it's hard with both pain and numbness. I take over the counter supplements that focus on providing the nerves the nutrients they need. I found the protocol of supplements in a closed Facebook group. It has helped many others with pain and allowed them to taper off of the drugs. That said, there is no cure for neuropathy so it's just treating the symptoms. Even though it's helping me, it may or may not work for you but it's worth the try. If you want more information, you can find it in my earlier post where I shared my story here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985.

I'm tagging @artscaping to see if she might be able to offer some suggestions that have worked for her.

You mention you have neuropathy. Have you had any neurological examinations or tests?

P.S. -- The first post is always the hardest. I'm glad you took the step. Keep asking questions. Learn as much as you can about your health conditions and keep advocating for your health.

REPLY

Hi this is my first post so please bare with me . I have got peripheral neuropathy and suffer numb feet and pain in my heels and calves and now I’m getting the pins and needles sensation in my right hand and worry it’s spreading . My GP is not doing much for me , I’m on pregabalin 100mg in a morning and same in the evening . He has just given me an extra tab 50mg to take in between which isn’t doing much to be honest . Iv now read about and been recommended CBD paste and decided I’m going to try this . Just wondered if anyone else has tried it and thoughts on this please ?

REPLY
@lynnejoy

Hi this is my first post so please bare with me . I have got peripheral neuropathy and suffer numb feet and pain in my heels and calves and now I’m getting the pins and needles sensation in my right hand and worry it’s spreading . My GP is not doing much for me , I’m on pregabalin 100mg in a morning and same in the evening . He has just given me an extra tab 50mg to take in between which isn’t doing much to be honest . Iv now read about and been recommended CBD paste and decided I’m going to try this . Just wondered if anyone else has tried it and thoughts on this please ?

Jump to this post

Hello, @lynnejoy - I'd like to add my welcome to Mayo Clinic Connect. I've moved your post and @johnbishop's response to this larger discussion on neuropathy so you can meet many others also dealing with this condition.

Have you also tried other medications or other therapies for the pain you've experienced prior to the pregabalin you mentioned you take currently?

REPLY
@lynnejoy

Hi this is my first post so please bare with me . I have got peripheral neuropathy and suffer numb feet and pain in my heels and calves and now I’m getting the pins and needles sensation in my right hand and worry it’s spreading . My GP is not doing much for me , I’m on pregabalin 100mg in a morning and same in the evening . He has just given me an extra tab 50mg to take in between which isn’t doing much to be honest . Iv now read about and been recommended CBD paste and decided I’m going to try this . Just wondered if anyone else has tried it and thoughts on this please ?

Jump to this post

Hi I am sensitive to all pharmaceuticals so for 2 years now I have been on medical marijuana it’s not a miracle but it helps with pain and sleep I also use CBD oil, it’s tricky and everyone reacts different as with other meds,it is a trial and error until you find which strains work best for you but I use CBD oil in the day time and an Indica strain before sleep,and I can get at least 5 good hours,if you would like to know more about this and if it legal in your state I would be happy to help you with information, please know that CBD is not all equal and hemp will not do what CBD oil does and there are a lot of multi level marketing out there offering their magic snake oil

REPLY
@friendz4

Hi I am sensitive to all pharmaceuticals so for 2 years now I have been on medical marijuana it’s not a miracle but it helps with pain and sleep I also use CBD oil, it’s tricky and everyone reacts different as with other meds,it is a trial and error until you find which strains work best for you but I use CBD oil in the day time and an Indica strain before sleep,and I can get at least 5 good hours,if you would like to know more about this and if it legal in your state I would be happy to help you with information, please know that CBD is not all equal and hemp will not do what CBD oil does and there are a lot of multi level marketing out there offering their magic snake oil

Jump to this post

Alas, I live in North Carolina, and medical marijuana is not legal yet. I think it will be legal sooner rather than later, since there is so much tax revenue for the State once it is legal. I hope so! i tried CBD Oil and the results were not noticeable, alas.

REPLY

Thanks for the reply. My main concern has been with poor balance making walking and standing difficult. Minneapolis clinic of Neurology had recommended
5-10 msg of Baclofen which I haven't been using as I didn't see that much benefit and will just live with the pain. I was wondering if there are other medications that would be recommended. Thanks

REPLY
@7510cahill

Thanks for the reply. My main concern has been with poor balance making walking and standing difficult. Minneapolis clinic of Neurology had recommended
5-10 msg of Baclofen which I haven't been using as I didn't see that much benefit and will just live with the pain. I was wondering if there are other medications that would be recommended. Thanks

Jump to this post

Morning, very sorry for this happening to,, but is your diagnosis ,,,femoral neuropathy, this is what they told me, I have balance issues, pain from hip all the way down to the top of foot and sides ,,not the bottom.. My leg will just give out and I fall backwards, have stabbing, at times it's like being hit with a board with 100 needles in it ,,they say it will get better that was in August when my insurance ran out,, it's been going on since June of 2018 ,,,hope to hear from you,, and wishing you the best ,,, ,Gary

REPLY
Please sign in or register to post a reply.