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Living with Neuropathy - Welcome to the group

Neuropathy | Last Active: Oct 27 5:51pm | Replies (6152)

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@gcattnu39

Hi,
I have idiopathic autonomic small fiber peripheral neuropathy that affects my sensory nerve endings. I have extreme cold intolerance to cold temperatures and everything I touch feels extremely cold or hot! My symptoms occurred after a car accident and additional injuries to my neck.
My symptoms have become a lot worse over the past 4 years and again after I got COVID this past winter!

Is there anything that can help with these cold sensations from getting worse! When I get cold, my symptoms get worse!

Ex: Tens units, red light therapy, etc.

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Replies to "Hi, I have idiopathic autonomic small fiber peripheral neuropathy that affects my sensory nerve endings. I..."

Hello, gcattnu39 (@gcattnu39)

I’m afraid I don’t have much to offer other than my understanding. I, too, have idiopathic polyneuropathy, but my PN leans more toward large fiber. What you and I have in common, however, is our sensitivity to cold (less so to heat).

For the longest time, I chalked up my sensitivity to getting older (I’m 79) and nothing more. But as time went by and I got to know others with PN—all varieties of PN—I discovered that a significant portion of us have such sensitivities, some to cold, some to heat, and some to both.

I have a dear friend who’s done months of chemo and tells me that she now has chemo-induced PN –– and, interestingly enough, is hyper-sensitive to cold. Only the other evening, she and I and a small circle of friends were having dinner; Denver’s early evening temp was something in the high 80ºs; those at the table with us were in cotton tops and shorts –– all but for my chemo friend and I: she and I were wearing zip-up sweaters. We were each asked maybe a dozen times, “Aren’t you warm in that?”

As I said at the top, I wish I had something to offer you other than my understanding and assurance that we are far from alone in our annoying sensitivity to cold and hot.

I wish you all the best!
Ray (@ray666)

Hello @gcattnu39, I would like to add my welcome to Connect along with Ray @ray666 and others. I'm another member with idiopathic small fiber peripheral neuropathy but only have numbness and some tingling. My feet do get sensitive to cold, more so in the winter time. There are members who have shared similar symptoms with cold sensations. Here's a link that shows other discussions and comments from members about cold sensitivity - https://connect.mayoclinic.org/search/discussions/?search=neuropathy%20+sensitivity%20to%20cold.

You mentioned that your symptoms started after a car accident and additional injuries to your neck. There is another discussion that you might find helpful:
-- Myofascial Release Therapy (MFR) for treating compression and pain:
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
There are quite a few different discussions in the Neuropathy Support Group with many on alternative treatments, like laser therapy, TENS, red light, scrambler and others. Here's a list of the Neuropathy Support discussions if you want to scan through the list to see if there is one that might be helpful - https://connect.mayoclinic.org/group/neuropathy/.