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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.

claude67 | @claude67 | Feb 20, 2023

I’m 67 yrs old and was a fit adult. I came down with muscle soreness in shoulders, hips, back etc, Jan 5th out of the blue. I’m in the process of getting evaluated for the cause but all signs seem to point to PMR? I’m not a doctor , so I don’t want to make that evaluation. My Dr. has put me on Prednisone and that’s the only relief I get. My question is , can you function with this condition and Meds? The pain is unreal.

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1 reply
aaron_az | @aaroncush | Feb 20, 2023
In reply to @claude67 "I’m 67 yrs old and was a fit adult. I came down with muscle soreness in..." + (show)
@claude67

I’m 67 yrs old and was a fit adult. I came down with muscle soreness in shoulders, hips, back etc, Jan 5th out of the blue. I’m in the process of getting evaluated for the cause but all signs seem to point to PMR? I’m not a doctor , so I don’t want to make that evaluation. My Dr. has put me on Prednisone and that’s the only relief I get. My question is , can you function with this condition and Meds? The pain is unreal.

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Hi @claude67,
There is a group here on Connect dedicated to PMR which may be helpful for you: https://connect.mayoclinic.org/group/polymyalgia-rheumatica-pmr/.

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treetop | @treetop | Feb 20, 2023
In reply to @treetop "I hear what your saying about the feet on fire. Have found some relief with Bio-Freeze,..." + (show)
@treetop

I hear what your saying about the feet on fire. Have found some relief with Bio-Freeze, a green gel that you smear on the bottom of feet and then rub it good on bottom of foot thick and then massage it in all over feet. Smells like menthol or Absorbine Jr. Amazon has it. I apply it at nite as I go to bed. Hope it helps you. Bet it will‼️

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It also needs to be known and understood that some RX meds can cause Peripheral Neuropathy. These include Ciprofloxacin, , Levaquin and other anti-biotics in a class of drugs called Fluoroquinolones. I mean they are poison and Doctors prescribe them regularly giving folks Neuropathy. Mine was toes first and eventually involved all of both feet. Also some in hands. Burning, stinging, pin pricking and feel like you are on Fire.

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becky70 | @becky70 | Feb 23, 2023

I finished taxcel 3 months ago. I had 12 sessions of tacxel weekly, with herceptin/perjeta every 3 weeks.. I did have ice on my feet and fingers. It didn’t seem to help. I was told at one of my consult appointments that the icing should begin half hour before and half hour after treatment. Scheduling at treatment didn’t allow for that and was then told they never heard of that and never do that. But I don’t think I could have tolerated more coldness. I am getting only herceptin now every 3 weeks. Neuropathy is in my toes, fingertips and tongue. Fingernails are extremely dry and a couple are coming apart from the skin underneath. I’ve been rubbing coconut oil, which seems to help some.

REPLY
2 replies
Mentor
John, Volunteer Mentor | @johnbishop | Feb 23, 2023
In reply to @becky70 "I finished taxcel 3 months ago. I had 12 sessions of tacxel weekly, with herceptin/perjeta every..." + (show)
@becky70

I finished taxcel 3 months ago. I had 12 sessions of tacxel weekly, with herceptin/perjeta every 3 weeks.. I did have ice on my feet and fingers. It didn’t seem to help. I was told at one of my consult appointments that the icing should begin half hour before and half hour after treatment. Scheduling at treatment didn’t allow for that and was then told they never heard of that and never do that. But I don’t think I could have tolerated more coldness. I am getting only herceptin now every 3 weeks. Neuropathy is in my toes, fingertips and tongue. Fingernails are extremely dry and a couple are coming apart from the skin underneath. I’ve been rubbing coconut oil, which seems to help some.

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Welcome @becky70, It sounds like you might experiencing neuropathy symptoms from your treatment. I'm wondering if you might find the following discussions helpful:
--- Chemotherapy-induced neuropathy: What helps get rid of it?:
https://connect.mayoclinic.org/discussion/chemotherapy-induced-neuropathy/
--- Baclofen for Chemo-induced Peripheral Neuropathy?:
https://connect.mayoclinic.org/discussion/baclofen-users/
--- Chemo-induced Peripheral Neuropathy and Breast Cancer:
https://connect.mayoclinic.org/discussion/neuropathy-11/.
Have you discussed the symptoms with care team to see if they might have some other suggestions?

REPLY
mhr31 | @mhr31 | Feb 23, 2023
In reply to @treetop "I hear what your saying about the feet on fire. Have found some relief with Bio-Freeze,..." + (show)
@treetop

I hear what your saying about the feet on fire. Have found some relief with Bio-Freeze, a green gel that you smear on the bottom of feet and then rub it good on bottom of foot thick and then massage it in all over feet. Smells like menthol or Absorbine Jr. Amazon has it. I apply it at nite as I go to bed. Hope it helps you. Bet it will‼️

Jump to this post

I can relate to the burning feet!. I can't use Bio- Freeze but I use Aspercreme with Lidocane. Its oder free and it works for 12 hours, also non greasy. GOOD LUCK AND GOD BLESS

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michael149 | @michael149 | Feb 24, 2023
In reply to @becky70 "I finished taxcel 3 months ago. I had 12 sessions of tacxel weekly, with herceptin/perjeta every..." + (show)
@becky70

I finished taxcel 3 months ago. I had 12 sessions of tacxel weekly, with herceptin/perjeta every 3 weeks.. I did have ice on my feet and fingers. It didn’t seem to help. I was told at one of my consult appointments that the icing should begin half hour before and half hour after treatment. Scheduling at treatment didn’t allow for that and was then told they never heard of that and never do that. But I don’t think I could have tolerated more coldness. I am getting only herceptin now every 3 weeks. Neuropathy is in my toes, fingertips and tongue. Fingernails are extremely dry and a couple are coming apart from the skin underneath. I’ve been rubbing coconut oil, which seems to help some.

Jump to this post

ice only makes the feet more numb-get with a pt who specializes in neuropathy to learn exercises that can help you and take one half a pill of Effexor 2x a day as your med is not working-Michael Storman

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romans8 | @romans8 | Feb 24, 2023
In reply to @katcollins "Thank you for your response. I have a neurosurgeon who performed my C5-6 fusion and discetemy...." + (show)
@katcollins

Thank you for your response. I have a neurosurgeon who performed my C5-6 fusion and discetemy. He feels that all the symptoms are not related to the spine injuries or surgery. I also have a neurologist and rheumatologist who are treating me for the symptoms. The neurologist feels it is autoimmune related and the rheumatologist feels that it is neurologically related. I'm like a ping pong ball right now. I have had three series of extensive blood work done and also two EMGs and four MRIs. The next step is the skin biopsy. Can you tell me more about the B12 treatments? I take B12 supplements and eat a diet rich in anti inflammatory foods to help my symptoms as much as possible. I also go to physical therapy and do tai chi at home. I will try any alternative treatments that I can find available. I will be going to the cleveland clinic next month. The mayo clinic is much farther away, but I will be inquiring about going there as well, once I am able. I am 45 years old and have two young children so this is quite a challenge for my family.
Thank you for any advice you have to offer.

Kat

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Have you or anyone else been using Horizant (gabapentin enocarbil) for neuropathy pain?

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1 reply
cmdont | @cmdont | Feb 25, 2023

Hi, I have been diagnosed with severe large fiber sensory polyneuropathy and have been advised there are no treatment options by two different neurologists.

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Feb 25, 2023
In reply to @cmdont "Hi, I have been diagnosed with severe large fiber sensory polyneuropathy and have been advised there..." + (show)
@cmdont

Hi, I have been diagnosed with severe large fiber sensory polyneuropathy and have been advised there are no treatment options by two different neurologists.

Jump to this post

Hello @cmdont, Welcome to Connect. I know there are no cures for neuropathy but I'm sure there are treatments for your symptoms to provide some relief. The trick is to find out what works for you. I think you might find the following discussion helpful:
--- Diagnosed with moderate/severe poly neuropathy: sensory motor:
https://connect.mayoclinic.org/discussion/diagnosed-with-moderatesevere-poly-neuropathy-sensory-motor/.
Have you done any research on complementary or alternative treatments?

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