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.
@johnbishop after reading some of the material you suggested I am concluding on my own that my neuropathy is from Fibromyalgia. I was diagnosed with it, along with Chronic Fatigue syndrome, 30 years ago and confirmed again last July at Mayo. I have a video appointment scheduled with the Fibromyalgia department at Mayo in 2 weeks and am going to bring it up. No neurologist has told me the cause of my problems. I am prescribed 1900 mg of gabapentin which I despise due to side effects. I have tried to cut back but the need ends up being greater than the issues of side effects. Sometimes I feel like it is a vicious circle of having severe shooting pain off the gabapentin, or terribly dizzy on it.
@suzanne2 - Here are some additional resources for Fibromyalgia that you may want to bookmark. You may want to check them out for alternatives to using gabapentin.
-- National Institute of Arthritis and Musculoskeletal and Skin Diseases: http://www.niams.nih.gov/hi/topics/fibromyalgia/fibrofs.htm
-- National Fibromyalgia Association: http://www.fmaware.org/
-- National Fibromyalgia and Chronic Pain Association: http://www.fmcpaware.org/
-- National Fibromyalgia Partnership, Inc.: http://www.fmpartnership.org/
-- The American Fibromyalgia Syndrome Association, Inc.: http://www.afsafund.org/
The Patient Revolution website has some note cards you can print out that helps you prepare for questions to ask at your upcoming video appointment - https://patientrevolution.org/visit-tools
Can you provide an update after your video appointment to let us know how it went?
@johnbishop how do you do this? Keeping all of these links on hand, you must be very organized. I did a search for electromyography, and this link appeared. I'm having an EMG done in July.
@Erinmfs I do bookmark links that I use a lot but I mostly use Google or Google Scholar for research stuff along with a qualifier like a + sign, for example I found the Mayo Clinic video on Google with the following search phrase:
"EMG (Electromyography) test +mayo clinic +youtube" without the quotes.
New to neuropathy in my feet. What are the best shoes and socks to wear
Hello @bcool123, Welcome to Connect. You are not alone! A lot of us with neuropathy have asked that same question and I'm sure there is a lot of variety to choose from. My neurologist recommended I wear a shoe that provides good side to side support. My preference for shoes are slip-ons that have memory foam insoles for comfort. I also love bamboo fiber socks that are stretchy but really soft but that was before I started wearing compression socks for my lymphedema in my legs.
There is another discussion on shoes for neuropathy that you may want to view here: Does anyone find that a type of shoe helps your foot neuropathy?: https://connect.mayoclinic.org/discussion/does-anyone-find-that-a-brand-of-shoes-helps-your-foot-neuropathy/
There is also another discussion where members have shared their experiences with their neuropathy journey that you might want to read here: Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/
Are you able to share a little more about how long you have had neuropathy and what type of neuropathy was diagnosed?
My neuropathy started in about March and I was diagnosed by my GP. Have not had any testing done yeah but it’s getting worse so I am going to make an appointment with my doc For EMG
On December 7 2011 a Phlebotomist stuck a needle in my left arm to draw blood went through the vein and into the nerve below. I have been trying to get help ever since. Today I’m totally paralyzed and have had my brain cut 3 times.
I’m trying to find someone who would like too test me 100% and try what ever will fix everything and get me back on the golf course.
Are you will to try?
Hi Theodore,
Welcome to Mayo Clinic Connect, an online forum where patients can share experiences and ask each other questions. It sounds, however, like you would like to seek the advice of medical professionals at Mayo Clinic. To request an appointment at Mayo Clinic, please see this website: http://mayocl.in/1mtmR63
PS: Please also note that I removed your personal contact information from your post. Mayo Clinic Connect is a public forum. We recommend using the secure private messaging if you wish to share contact information.
To contact a moderator, please use this form: https://connect.mayoclinic.org/contact-a-community-moderator/
I have small fiber naturopathy and it has gotten so much worse I have seen many doctors and nothing has worked anyone have a solution for this??