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.

John, Volunteer Mentor | @johnbishop | Aug 8 8:04am

In reply to @jacquimoii "I am jacquimoi m M" + (show)

Welcome @jacquimoii, Do you have neuropathy? Have you found any treatments that have given you some relief for the symptoms?

mikeyboni | @mikeyboni | Aug 9 2:23pm

I thought I'm doing good but......
Recently I was diagnosed with Neuropathy, and I thought I was doing good. I exercise everyday, watch what I eat, my averaged A1C for the past 5 years is 6.2, my last Lab test in June is 6.1 everything is normal: Glucose, Triglycerides, HDL, LDL, Cholesterol even my BP is normal but yet I was still diagnosed with PN last month. Burning sensation pain on rt arm, rt side of leg and upper back, I also became sensitive on warm water and sudden change temperature, it gives me chills and goosebumps. My Neuro Dr prescribe me Gabapentin and I'm already on max dosage. It's really uncomfortable, I'm just thankful that I can't still sleep at night with no trouble. Anything that you can share, I would appreciate it.
Thanks,
Mike S.

John, Volunteer Mentor | @johnbishop | Aug 9 3:11pm

In reply to @mikeyboni "I thought I'm doing good but...... Recently I was diagnosed with Neuropathy, and I thought I..." + (show)

Hello Mike @mikeyboni, Welcome to Connect. It sounds like you are staying active and trying to eat healthier which is good for anyone including those of us with neuropathy. Your description of having a burning sensation pain on your right arm, right side of your leg and upper back sounds similar to the symptoms from a pinched nerve. Here's some information from Mayo Clinic on symptoms from a pinched nerve - https://www.mayoclinic.org/diseases-conditions/pinched-nerve/symptoms-causes/syc-20354746.

Is the burning sensation pain on the right arm, leg and upper back new symptoms after being diagnosed with neuropathy or were they present when you started the treatment with Gabapentin?

mikeyboni | @mikeyboni | Aug 9 4:37pm

In reply to @johnbishop "Hello Mike @mikeyboni, Welcome to Connect. It sounds like you are staying active and trying to..." + (show)

Yes, I already have those burning sensation when I started Gabapentin and BTW, my PCP also referred me to Pain Mgmt doctor he ordered an MRI, results is negative from pinched nerved or dysesthesia

gonecoastal27932 | @gonecoastal27932 | Aug 10 10:38am

In reply to @mikeyboni "I thought I'm doing good but...... Recently I was diagnosed with Neuropathy, and I thought I..." + (show)

What is considered max dosage. Trying to gauge how mine stacks up. Thank you.

norelle27 | @norelle27 | Aug 10 7:49pm

In reply to @gen55 "My neuropathy seems to be progressing to the point where it hurts to walk. I'm looking..." + (show)

Try going to your local SAS shoe stores. They are expensive but worth the investment. I have atrophy, PN, hammertoe, high archs, narrow feet. And I work on my feet for hours at a time. I know how difficult it is to find a good fitting shoe.
Try SAS. They have so many styles and a wide range of widths too! Good Luck!

gen55 | @gen55 | Aug 10 8:36pm

In reply to @norelle27 "Try going to your local SAS shoe stores. They are expensive but worth the investment. I..." + (show)

Thank you, I will try them!

mikeyboni | @mikeyboni | Aug 10 9:54pm

In reply to @gonecoastal27932 "What is considered max dosage. Trying to gauge how mine stacks up. Thank you." + (show)

300mg cap, 2 caps in the morning, 2 caps at lunch and 2 caps in the evening. Total of 1800mg/day. I just google it max dosage is between 2400 to 3600. My dr didn't even mentioned to me that he's giving me the max dosage, it just my impression. Sorry

gonecoastal27932 | @gonecoastal27932 | Aug 10 10:58pm

In reply to @mikeyboni "300mg cap, 2 caps in the morning, 2 caps at lunch and 2 caps in the..." + (show)

Thank you for responding Mine are 600 in am 300 midday and 600 at night. Can make me a bit dizzy

chloebusybee3 | @chloebusybee3 | Aug 11 3:35am

Has anyone tried these magical supplements advertised on Facebook & now Instagram. They are supposed to be chocked with the B vitamins & Turmic?Others claim certain flowers, sesame seeds & the like to stop or at least get some relief with the neuropathy (Burning feet & painful nerve attacks?)