Member Neuropathy Journey Stories: What's Yours?

Through trial and error, so far I have discovered the burning of my lower limb intensifies as my environmental temperature decreases. I have placed both feet in a bucket of warm water. I have neuropathy only in one leg. The normal leg detects the correct temperature of the water while the other leg feels a much cooler water temperature. Mind you both legs are in the water at the same time. The same will hold true for air temperature. I believe since there are not enough nerves to sense true temperatures, the nerves send the wrong signals to the brain. To compensate for a much lower air temperature, the brain will cause an increase in body temperature to the leg with the neuropathy, thus the burning pain. I have not tried the opposite e.i. to increase and sustain the warmer air temperature in order to stop the burning pain. I have experienced an increase in burning pain as a result of more carbs in my diet or with a sustained decrease in air temperature. I had the same thought with cooler air temperatures that they were comforting with the burning pain. I live in Florida. During the holidays I visited a state with a colder climate. Temperatures had reached below freezing. I was camping and exposed to sustained cold temperatures. During my visit I had experienced more burning and couldn’t understand why until now. With the winter Florida temperatures dropping after the summer season, I seem to be having more burning now than from the summer time. I will continue to learn through my journey of this awful disease. I hope to someday provide answers as I realize everyone is different and few may benefit from my discoveries. Best wishes for finding relief.
Toni

Hi my pain has been with me for 14yrs,a few years ago I lost weight,ate right,followed all the "guidelines" for managing pain and have to accept the reality that nothing helps. I am wondering if anyone had tried Tramadol? I have used 50mg 3x a day which did nothing,I have read it helps some people at a higher dose. Finding a Dr. that will prescribe anything is impossible,I go to UCDavis in Sacramento,ca,the common practice for pain is mind fullness practice and putting your pain on a leaf,visualize it floating away, I am being a bit sarcastic but my "leaf" didn't leave the shore!

I am so sorry to hear of your years of pain. I do not know about Tramadol, but I take hydrocodone on the really bad days. My PCP provides these to me and knows I will not take too many. I surely do not want this habit. My limit is two per day, but I seldom take two. I do go days without taking any. It helps in the worst of days. I loved your take on the mindfulness practice. My husband says I practice mindlessness. I think this pandemic has caused my brain to be in a fog or maybe I am just getting old. You still have a sense of humor. I liked what you said about your leaf not leaving the shore. Sometimes these sorts of things work for people and for other like you, they do not. I wish you well in your search for something that will relieve your pain. @joybringer1

@notborntoburn
I do not like your neuropathy story but I like the way you tell it. As awful as it is, might as well keep a sense of humor about you. My sympathies for living during the bad times of America's Big Drug Crackdown.

@notborntoburn, You will notice that we merged your post with an existing discussion on member neuropathy stories. I see that @jesfactsmon and @joybringer1 have responded to your post. Hopefully other members will be able to share their experience with Tramadol. Here is some information I found on Tramadol for neuropathy:

"We found low-quality evidence that oral tramadol has any important beneficial effect on pain in people with moderate or severe neuropathic pain. There is very little evidence from which to take these conclusions." - Tramadol for treating neuropathic pain:
https://www.cochrane.org/CD003726/NEUROMUSC_tramadol-treating-neuropathic-pain
"Tramadol. Tramadol is a powerful painkiller related to morphine that can be used to treat neuropathic pain that does not respond to other treatments your GP can prescribe. Like all opioids, tramadol can be addictive if it's taken for a long time. It'll usually only be prescribed for a short time." - Peripheral neuropathy - Treatment - NHS: https://www.nhs.uk/conditions/peripheral-neuropathy/treatment/#:~:text=Tramadol,prescribed%20for%20a%20short%20time.

Hello notborntoburn, first of all I love your Mayo name! I am very heavy hearted to hear about your pain. I was put on Tramadol back in the day. My understanding is (which could be wrong) that it is an opiate with an epinephrine in it. The thinking was that the epi would keep patients from getting high while on the Tramadol. It made me clench my teeth and have insomnia. I think it may have helped my pain somewhat but very minimally. I can't recall the dose I was on but don't think it was as much as you are on. Today 2 of my doctors met and increased my Morphine. I about fainted! I didn't ask for that and in fact had tapered myself down a lot over the past couple of years. That and the Gabapentin has helped my tolerate my pain but I have almost all the unwanted side-effects of Gabapentin so I'm thinking that I may be able to decrease my dose when I begin my new Morphine regime on Wednesday. I believe there was Divine intervention for these two docs to talk and have this compassion. I'm stunned! I don't like to feel any drug so don't know if I will take the extra mg. but we'll see. I definitely won't take it if I don't need it. I hope you can find just the right doctor. It's so hard now b/c there is opiophobia out there now and patients are receiving substandard care. You practically have to have cancer for a doctor to validate your pain and be willing to prescribe opiate pain medicine. You build up a tolerance after being on meds like this which isn't something you want either. I will pray that you find just the right doctor for you and your needs. And that your pain goes away!!!!!!!! Take care, many blessings, Sunnyflower

Hey there John, how are you doing? I didn't see this message when I replied sharing my experience w/ Tramadol. These two statements here are contradictory yes? Warmest and best wishes, Sunny

Hello Laurie @artist01, and Lori @lorirenee1, I always call my pharmacist when I want to introduce a new supplement or medication into my arsenal. I have been surprised over the years how much affect a supplement or medication can have on another. Oy, scary!! Be safe and well, Sunnyflower

Oh my gracious!!! I'm going to save this b/c I have to read it again. It sounds like good logic/rationale! Interesting! Good on you for doing the testing! Thanks for sharing!!! Many blessings, Sunnyflower

Thank for the info I think I’ll give up the idea!