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.
No, I haven't been taking anything to help.
I just joined today. My neuropathy is in my toes. I had spinal surgery and the neuropathy started right after the surgery. I only have the pain in my toes as soon as I go to bed for the night. You would think my toes had a brain!! I take Gabapentin but it affects my balance the next day. What is the recommended dose? I am 85 years old and weigh 145 lbs.
Welcome @accobra, It's fun to have a crazy dream. Even more fun when you have a song to go along with it - https://youtu.be/oc6FmZCT0Zc. It's good to hear your diabetes is fairly well controlled. I'm also a Vietnam vet but did all of my duty on a tin can off the coast supporting the ground troops. I have idiopathic small fiber PN but I don't have any pain, just some numbness and tingling in the feet and legs mostly. I posted my story in another discussion here - https://connect.mayoclinic.org/comment/310341/.
It sounds like your neuropathy symptoms are pretty much controlled by the Gabapentin. Have you made any lifestyle changes to see if they help with the diabetes and the neuropathy?
Welcome Nancy @nancyajf8, There are a couple of other discussions you might find helpful:
-- Chemotherapy-induced neuropathy: What helps get rid of it?: https://connect.mayoclinic.org/discussion/chemotherapy-induced-neuropathy/
-- Small Fiber Neuropathy: What helps?: https://connect.mayoclinic.org/discussion/small-fiber-neuropathy/
Welcome @yvie, Sorry to hear your neuropathy started after your spinal surgery. Gabapentin can help with the pain but does come with it's own set of side effects. Have you discussed the side effects with your doctor or pharmacist to see if they have a recommendation on the dosage?
The surgeon prescribed 300 mg and my Internal Medicine doctor dropped it down to 100 mg. I am currently not taking either one’s advice because I find that rubbing Lidocaine on the toes stops the pain within 15 minutes. The only problem is that it wears off in about 4 hours and I have to do it again. I may go back to the Gabapentin and compromise on 200 mg. Thanks for thinking of me.
I did have all Pfifzer shot protocol for Covid. Thus us the first I have heard of relationship.
I am 75 and on Duloxetine and Gabapentin. Neurologist increasing Gabapentin. I walk 4 to 6 miles a day and it has gotten darn painful.
@lorrainehackett
@pnu
Both Gabapentin and Lyrica can take up to a month or so to be fully effective.
The only way I know to decrease progression is to repair what caused the Neuropathy.
Here is a link to The Foundation for Peripheral Neuropathy.
https://www.foundationforpn.org/
Jake
Hi, my name is John, I am a 64 year old otherwise healthy male. I was diagnosed with idiopathic, small fiber neuropathy. The diagnosis was confirmed by a skin biopsy. My symptoms are numbness and tingling on the bottom of my feet, muscle twitching in my lower legs, slight numbness in my fingertips and numbness and tingling on the tip of my tongue which has slightly altered my sense of taste. I also have urge incontinence. I believe the SFN was brought on by an environmental exposure. I was exposed to a high concentration of carbon dioxide and carbon monoxide from a temporary natural gas heater on a construction site. I am curious if anyone else has neuropathy from this type of environmental exposure.
adejuliannie just joined have Neuropathy because of Disc in Back collapsed on a Nerve. Take 150mg of Pregabalin twice a day. Two years ago had a Treatment Sansex covered by Medicare that helped Tremendously before had no feelings in both Feet it solved that problem an Tingeling. Medicare has since stopped paying for it.