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.

Rachel, Volunteer Mentor | @rwinney | Jan 27, 2020

In reply to @wilcy "Same here!" + (show)

☹

Rachel, Volunteer Mentor | @rwinney | Jan 27, 2020

In reply to @rwinney "☹" + (show)

Mama never said there'd be days like this.

wilcy | @wilcy | Jan 27, 2020

In reply to @rwinney "Mama never said there'd be days like this." + (show)

That’s for sure! Getting old not fun! We were lied to!

swartzki | @swartzki | Jan 28, 2020

Well, skin biopsy is positive for sfn. Now what? My husband is not supportive. He told me yesterday he plans to look out for himself, and he's really good at that. He has stolen thousands of dollars from me in the last ten years. So I'm looking at disability, divorce, financial ruin, and let's not forget for extra fun--baldness. I don't have one person to advise me. I have a beautiful home on 3 acres with dogs and a horse. I don't know how to begin to get rid of my beloved horse, clean out my house, sell it, leave my job, pay my mooching husband off. Suicide seems much more logical. I have two grown daughters, but they don't acknowledge this and they have their own lives to live. I have two gorgeous grand children that I want more time with. I'm still working, so my inclination is to just keep getting up and going in until I have a heart attack or get fired.

swartzki | @swartzki | Jan 28, 2020

I'm sorry. Y'all come here for support, not my garbage thoughts. Keep up the fight.

wilcy | @wilcy | Jan 28, 2020

Morning, what is sfn

Nazir Khan | @nukhan | Jan 28, 2020

In reply to @wilcy "Morning, what is sfn" + (show)

Sfn stands for small fiber neuropathy

wilcy | @wilcy | Jan 28, 2020

Guess that’s what I have! Have had shots, back surgery, pills etc! About to have stimulator wires placed in back! Also tried Curcumin, cbd, medical marijuana! Very bad feet neuropathy!

John, Volunteer Mentor | @johnbishop | Jan 28, 2020

In reply to @swartzki "Well, skin biopsy is positive for sfn. Now what? My husband is not supportive. He told..." + (show)

@swartzki, I'm really sorry to hear that your husband is not supportive. That's on him and not you. The fact that you are here looking for answers and learning as much as you can about your small fiber neuropathy condition is a good thing. The more you can learn, the better chance you have of finding a treatment or therapy that works for you. Although small fiber neuropathy (SFN) is serious, it is not (IMHO) the end of the world. Hoping you are able to take it one day at a time, one step at a time, learning as much as you can and find something that will help your symptoms.

Nazir Khan | @nukhan | Jan 28, 2020

I also have cervical as well as lumbar spinal stenosis. My sfn is idiopathic which means the underlying cause is not known. I suspect that spinal stenosis may be the culprit