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.
Welcome @cthrash, You might want to scan through the following discussions to learn what other members have shared:
-- Diabetic neuropathy: https://connect.mayoclinic.org/discussion/diabetic-neuropathy-3/
-- Electric shocks from peripheral neuropathy: https://connect.mayoclinic.org/discussion/electric-shocks-from-peripheral-neuropathy/
Have you been diagnosed with diabetic neuropathy? Have you started any treatments?
Have you discussed your symptoms with your physician?
I would suggest seeing your provider prior to starting self treatments. Diagnostic imaging such as EMG, or MRI might be suggested by your physician. Is your glucose under control?
No I haven’t seen a doc since they have gotten so bad in the last 6 weeks but I have been dealing with this for 18 years but have never hurt like right now. My left foot is just continually hurting. My sugar is good and my a1c was 5.7
I have been dealing with peripheral neuropathy for the last year and a half. I'm on gabapentin. I've had scans and lots of blood work with no solutions. For the last 4 months my legs have suddenly gotten very weak and I can get pretty fatigued. I just started PT, which I had to insist to get, otherwise no one has offered any help or advise. Has anyone else had weakness like this?
I have it in both legs and arms the paralysis. The only difference is I have SFN, Dysautonomia (causes paralysis), severe axonal sensorimotor peripheral polyneuropathy, and cardiac autonomic neuropathy. The neuropathy moves through your body affecting other parts of the body that have nerves. The doctors don’t tell you about it. I made a list of each one and what happens. The doctors tell you can’t die from it yet when it moves into your heat the electrophysiologist and cardiologist give you eight years left to live. Medications don’t work for the arrhythmias and blood pressure problems. Just an fyi disautonomia also causes seizures. Which they don’t tell you about until your first couple of seizures. It’s frustrating that doctors are not up front with you.
My name is Paul. I was diagnosed with neuropathy back in 2015 at the Mayo Clinic. I have been dealing with balance issues, nerve pain in both legs and arm for the pass 8 years. The issues are continuing to progress with very little relief. Now I'm starting to have stomach pains and digestive issues. A doctor told me that it could be due to my neuropathy. I was wondering if anyone else is having this issue as well.
Hi Paul @pspencer2500, Welcome to Connect. I don't think you are alone with a lot of the symptoms you mentioned. @fisbo, @mcd123 and @rpenn have mentioned digestive issues with neuropathy and may have some information to share.
Are there certain foods that trigger the stomach pains and digestive issues?
Recently the numbness has increased and I’m starting to fall easily. I have quad canes and a rollator. How to improve balance? Am taking pt after my Dec fall.
Welcome @rannr, I think all of us folks with neuropathy struggle with balance and exercise is key to improving our quality of life. Here are a couple of balance articles from the Foundation of Peripheral Neuropathy:
-- Alternative Therapies That Enhance Balance: https://www.foundationforpn.org/brain-based-balance-exercises/
-- Maintaining Balance: https://www.foundationforpn.org/maintaining-balance/
Here's a YouTube video that I thought was helpful to understanding the challenges and what to work on. I like that it points out that certain types of shoes may cause more balance problems for people with neuropathy. - Standing Balance for People with Peripheral Neuropathy: https://www.youtube.com/watch?v=j1bjDmmpPkw
How is your PT going?
I have found that doing some leg exercises and foot exercises and just generally keep moving, daily, has made me feel stronger. I use a recumbent bike or a portable elliptical daily. I was never offered Physical Therapy by my primary, a neurologist, or the podiatrist. I went from a cane to a walker very quickly. I could not use a cane on pavement. Now that my legs feel stronger, I have asked my primary for a referral to PT for balance and gait training. My hope is to be 'taught' how to safely use a cane outside of the house. Getting a walker into a car is tricky.
Are you presently taking PT? I hope they address your concerns.