Living with Neuropathy - Welcome to the group

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?

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.

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!

I'm Paul. 83 years old and led a fairly active sports life until about a year ago when I developed serious balance problems that negated my tennis playing etc.
To keep active I purchased an indoor bike and work out 3 times a day.
I have recently felt tingling sensations in my legs and pain creeping up to my ankles. I guess that is the start of peripheral neuropathy. I haven't seen a doctor yet but have done some research on neuropathy and am convinced of my self diagnosis. The pains I'm experiencing are not excruciating but annoying. I have a question for the group. Has anybody used a Hemp Cream for pain relief? If so did releive the pain?

Hi Paul @paulmaj, Welcome to Connect. @lorirenee1 mentions using a hemp cream in another discussion that you might find helpful - https://connect.mayoclinic.org/discussion/awesome-hemp-salve-product-for-neuropathy-at-ananda-hemp/. It's good to learn as much as you can about the condition and treatments that are available for the symptoms as there really is no cure for neuropathy. The Foundation for Peripheral Neuropathy has a pretty comprehensive list of the complementary and alternative treatments people have found helpful - https://www.foundationforpn.org/wp-content/uploads/2020/08/Complementary-and-Alternative-Treatments-Revised-2020-final.-1.pdf.

Neuropathy Commons is another site that is good for learning more about neuropathy - https://neuropathycommons.org/neuropathy/neuropathy-overview.

Are you thinking about setting up an appointment with a neurologist to confirm your self diagnosis?

Hello, Paul (@paulmaj)

I wish you the best! And welcome to the Forum. I'd definitely suggest you talk to a neurologist. I've been fortunate to get appointments pretty quickly, but I've read many posts from folks who've had to wait weeks, if not months, before meeting their first neurologist. Keep us posted, will you?

Happy Holidays!
Ray (@ray666)

Thank you, I appreciate your support. I have a neurologist who is actually helping me.

I find the posts very helpful although we all seem to have different symptoms it's nice to know that we are speaking to others who Uderstand our problems I read most of the posts even from those who have different types of nueropathy mine is pn burning it's not too bad at home one can cope much easier it's when we go out well your out so to speak james IRELAND

Thank youI am already a member
Good discussions. We are all searching for something to help with Neuropathy , a treatment that works, a silver bullet that works. But there is none. I'm 86 and I don't believe I will find it in my lifetime. Hopefully a new treatment that works will help in the future.

I’ve used CBD cream and that helps some.