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 | Aug 31, 2019

In reply to @jakedduck1 "@rwinne Does the lidocaine help the numbness at all? Jake" + (show)

My numbness is not nor has ever been permanent. My shoulder, arm and hand experience it in intervals regardless of lidocaine but not as often since. For me lidocaine infusions have relieved pain, aching and cramping in calves that had been preventing me from walking in addition to overall relief of pain throughout my body.

Leonard | @jakedduck1 | Aug 31, 2019

In reply to @rwinney "My numbness is not nor has ever been permanent. My shoulder, arm and hand experience it..." + (show)

@rwinney
Thank you for your prompt reply. You say infusion, are you talking about IV infusion? Which doctor orders it? Do you infuse at home or go to the doctor and how often is the infusion done and how long does it take? What is your dose? My experience with lidocaine is that it doesn’t last very long.
I’ve only used lidocaine spray for my mouth because of bitting my tongue and cheeks. Also injections for stitches which are short acting. I remember I couldn’t use very much.
Jake

Rachel, Volunteer Mentor | @rwinney | Sep 1, 2019

In reply to @jakedduck1 "@rwinney Thank you for your prompt reply. You say infusion, are you talking about IV infusion?..." + (show)

Good morning Jake,
My neurologist orders and I go to my local Apheresis/Infusion unit of a hospital once a week to receive 900mg of intraveneous lidocaine. I am hooked up to heart monitors as its important for constant monitoring. Lidocaine infuses by a slow drip over 4 hours and vitals are taken every 15 minutes for first hour then every half hour for the duration. I have been receiving lidocaine infusions for 11 weeks and began at 600mg. Slowly increase over time until you feel you are receiving proper benefit. I'm meeting with neurologist in 2 weeks to discuss my over all plan. I believe he can increase the dose one more time to max it out and that doseage is based on weight and age by formula. Hope this helps!
I do believe it is well worth the try for anyone with chronic neuropathic pain or fibromyalgia. Good luck!

Rachel, Volunteer Mentor | @rwinney | Sep 1, 2019

In reply to @rwinney "Good morning Jake, My neurologist orders and I go to my local Apheresis/Infusion unit of a..." + (show)

Jake~
I just checked your bio and I wanted you to read the attached link due to your diagnosis. Lidocaine IV may not did work for your diagnosis but, I'm not a doctor of course. Speak to your neurologist.
https://anesthesiology.pubs.asahq.org/article.aspx?articleid=1944222

Jim, Volunteer Mentor | @jimhd | Sep 1, 2019

In reply to @rwinney "Good morning Jake, My neurologist orders and I go to my local Apheresis/Infusion unit of a..." + (show)

@rwinney I've never heard about the lidocaine infusion. I use it as a cream, which of course is temporary. I'm going to Google it and speak with my doctor about it next week.

You say you're on six weeks. Will you need to have the infusion weekly indefinitely?

Jim

kansasgal | @kansasgal | Sep 1, 2019

Summertime4, I had the Mortons Neuroma surgery only on my right foot. Today (1 and a half years after) the pain in both feet is still exactly the same, so I did not have Mortons Neuroma. I also had swelling on the top of my feet, and found out too late that Mortons Neuroma does not cause any swelling. It sounds like we are on the same meds, except I also take Lyrica. It now comes in a generic, so it's a lot more inexpensive than it was last month! Maybe adding Lyrica into your mix might help you as well.

Rachel, Volunteer Mentor | @rwinney | Sep 1, 2019

In reply to @jimhd "@rwinney I've never heard about the lidocaine infusion. I use it as a cream, which of..." + (show)

Hi Jim
Definitely check it out. Tuesday will be my 12th weekly visit. I am meeting with my neurologist in 2 weeks to discuss whether another increase is necessary. At that time I will ask questions about the frequency. My Dr. never likes to go farther than the moment as there are so many variables with this disease, from patient to patient. The one thing I have been made to learn is that my life is now forcibly lived one day at a time. I believe (via the internet) that infusions may be given on a variety of intervals based on need. I will be curious to find out how you make out once speaking with your neurologist. Good luck!

barbbie | @barbbie | Sep 1, 2019

In reply to @summertime4 "I have a question for anyone who might answer. I am told that my extreme foot..." + (show)

I do not have Mortons Neuroma but I do have Complex Regional Pain Syndrome in both feet. I have a great pain management doc who is brilliant at what he does. He injected the sural nerve with an anesthetic. He hit the spot and now this week I am having radio frequency ablation. With RFA I have had relief from occipital headaches for almost 2 years so I have great hopes to keep the CRPS sharp, lightning pain at bay. The reason I have CRPS is because of 3 surgeries on the same foot. I would make surgery the very last resort.