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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.

galenagai | @galenagai | Oct 27 7:48am

I finished 3 months of Folfox in early September for colon cancer. I had a CT scan then and was told I am cancer free. Four days later I got a twinge in my lower back that escalated to severe constant pain. My oncologist passed me on to my family doctor. The doctor at first thought I had shingles. This did not present so he put me on gabapentin. This did nothing for the pain. I have beentoa pain management clinic who ordered Lyrica. I have tried acupuncture. I will not take any more pain drugs right now as the side effects. are not worth it. So..i am now waiting for an order of cbd. This pain is stabbing, burning and the skin is sensitive to touch. The doctors her have not seen this type of pain from chemo but assume that is what it is. Any suggestions for me?

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Mentor
John, Volunteer Mentor | @johnbishop | Oct 27 8:31am
In reply to @galenagai "I finished 3 months of Folfox in early September for colon cancer. I had a CT..." + (show)
@galenagai

I finished 3 months of Folfox in early September for colon cancer. I had a CT scan then and was told I am cancer free. Four days later I got a twinge in my lower back that escalated to severe constant pain. My oncologist passed me on to my family doctor. The doctor at first thought I had shingles. This did not present so he put me on gabapentin. This did nothing for the pain. I have beentoa pain management clinic who ordered Lyrica. I have tried acupuncture. I will not take any more pain drugs right now as the side effects. are not worth it. So..i am now waiting for an order of cbd. This pain is stabbing, burning and the skin is sensitive to touch. The doctors her have not seen this type of pain from chemo but assume that is what it is. Any suggestions for me?

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From what I've read Folfox can cause pain in other parts of the body.
"Pain in different parts of the body - This treatment can cause pain in different parts of your body such as you back or tummy (abdomen) pain. Less commonly in your bones and joints."
-- Folinic acid, fluorouracil and oxaliplatin (FOLFOX):
https://www.cancerresearchuk.org/about-cancer/treatment/drugs/folfox
You might want to scan through the list of discussions in the Cancer: Managing Symptoms Support Group - https://connect.mayoclinic.org/group/cancer-managing-symptoms/ and also the discussions on chemo-induced neuropathy - https://connect.mayoclinic.org/search/discussions/?search=chemo%20induced%20neuropathy.

REPLY
joanland | @joanland | Oct 27 5:51pm

I, too, have idiopathic progressive large-fiber polyneuropathy. It is cheering to hear that you have been able to stop progression (as detected by EMG). That is a strong recommendation for keeping up with exercise and to keep moving this body!
Thanks!

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