1. < Neuropathy
Moderator

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.

Mentor
Chris Trout, Volunteer Mentor | @artscaping | Jul 20, 2019

@wilcy So...did you also find folks to help you make your selections? I hope it goes well and that you experience some relief. Thanks for checking in with us. Have a restful sleep. Chris

REPLY
Mentor
Chris Trout, Volunteer Mentor | @artscaping | Jul 20, 2019
In reply to @barbbie "I also have many allergies to medications. I have Complex Regional Pain Syndrome in both feet..." + (show)
@barbbie

I also have many allergies to medications. I have Complex Regional Pain Syndrome in both feet and my left knee, as well as small fiber neuropathy from the knees down. Just had nerve studies done and was dx with severe distal sensory and motor neuropathy. Lots of pain involved. Last July I had my second spinal cord stimulator implanted. My first was done in 2012. I seldom take my oxycodone. I also have DDD throughout my spine and see pain management on a regular basis. I find radio frequency ablation rids me of pain from 6 months to two years! I am blessed to have an incredible pain management doctor who is brilliant, suffers from pain himself, is very caring, and has a great positive attitude.

Jump to this post

@barbbie, it is great to read that you have a good and trusting relationship with your pain management doctor. Congratulations for making the effort and being a cooperative patient. Sleep well tonight....Chris

REPLY
gmaw4 | @gmaw4 | Jul 21, 2019
In reply to @wilcy "Got 6 small samples to tests! Will know tomorrow if it works!" + (show)
@wilcy

Got 6 small samples to tests! Will know tomorrow if it works!

Jump to this post

Hope it goes well - keep me posted!

REPLY
1 reply
gmaw4 | @gmaw4 | Jul 21, 2019
In reply to @cocodab "Wow sounds like you are going through a lot. Nice to have someone that understand how..." + (show)
@cocodab

Wow sounds like you are going through a lot. Nice to have someone that understand how bad this pain is. Maybe you have to suffer to know it unfortunately. I find myself crying sometimes lie (many times)because you feel alone because no one truly understands what it takes away from you.

Jump to this post

For many years I spent probably 60-70% of my day in bed. Pain meds made me tired. My quality of life diminished. Socially, I pulled way back because when others saw my pain they were helpless and I wanted to hide. I tried to continue to work and was in such a brain fog. Fortunately, I had an office and would shut my door and rest on the floor. I pushed thru exercise classes and would get painful spasms that would draw attention. I explained that they would pass and one day the instructor said in front of everyone that I freak her out. I stopped. I’ve never had such pain in my life as I’ve had from shingles. I was 56 at the time and am now 71. The saddest thing is there are many worse off than I am. I fake my way thru social events. Smile, laugh and act like I’m enjoying myself when in reality I just want to be home and in bed.

REPLY
Mentor
Rachel, Volunteer Mentor | @rwinney | Jul 22, 2019

This is the place I come because no-one in my life can possibly understand what goes on inside my body with SFN. I find comfort and support just reading through yours posts. Thank you for sharing and helping me make a connection of sympathy, encouragement and guidance.

REPLY
Mentor
Chris Trout, Volunteer Mentor | @artscaping | Jul 22, 2019

@rwinney, Some beautiful and genuine thoughts in your post. Thank you. Chris

REPLY
1 reply
wilcy | @wilcy | Jul 22, 2019
In reply to @gmaw4 "Hope it goes well - keep me posted!" + (show)
@gmaw4

Hope it goes well - keep me posted!

Jump to this post

So far, not doing anything!

REPLY
Mentor
Rachel, Volunteer Mentor | @rwinney | Jul 22, 2019
In reply to @artscaping "@rwinney, Some beautiful and genuine thoughts in your post. Thank you. Chris" + (show)
@artscaping

@rwinney, Some beautiful and genuine thoughts in your post. Thank you. Chris

Jump to this post

Thank you. It's so true though as I sit here crying reading everyones responses and likes. You all do help me. I'm at the hospital now hooked up to my 6th lidocaine infusion, after taking my hydrocodone for comfort and pain relief. I hate taking a narcotic! I'm so against it. I've never drank, smoked or done drugs and here I sit going through the motions with lidocaine that doesn't help this far, just trying to reduce the hydro.

REPLY
2 replies
Mentor
Rachel, Volunteer Mentor | @rwinney | Jul 22, 2019
In reply to @rwinney "Thank you. It's so true though as I sit here crying reading everyones responses and likes...." + (show)
@rwinney

Thank you. It's so true though as I sit here crying reading everyones responses and likes. You all do help me. I'm at the hospital now hooked up to my 6th lidocaine infusion, after taking my hydrocodone for comfort and pain relief. I hate taking a narcotic! I'm so against it. I've never drank, smoked or done drugs and here I sit going through the motions with lidocaine that doesn't help this far, just trying to reduce the hydro.

Jump to this post

It was such a hard weekend...my daughter's graduation from high school party. I live for my kids and these moments and powered through so much. It didn't kill me but boy oh boy did it all hit me super hard. I had so much pain and moments of removal from the party due to dizziness, over heating, palpitations, and shortness of breath, along with migraine mid day which thankfully Cambia aborts. I just really miss life as it used to be.

REPLY
3 replies
cocodab | @cocodab | Jul 22, 2019
In reply to @rwinney "It was such a hard weekend...my daughter's graduation from high school party. I live for my..." + (show)
@rwinney

It was such a hard weekend...my daughter's graduation from high school party. I live for my kids and these moments and powered through so much. It didn't kill me but boy oh boy did it all hit me super hard. I had so much pain and moments of removal from the party due to dizziness, over heating, palpitations, and shortness of breath, along with migraine mid day which thankfully Cambia aborts. I just really miss life as it used to be.

Jump to this post

So sorry truly feel for you!❤️

REPLY
1 reply
View MoreView Less
Please sign in or register to post a reply.