Living with Neuropathy - Welcome to the group

I even had Alpha Lipoic
Acid infusions arranged for me by my naturopathic doctor. I think the point is more to support nerve healing rather than just pain reduction. I believe it helped though I can't prove it because there is no way to know how much I would have improved without it.

Thanks for the hug.

"Finally, a diagnosis" certainly applies to me.
About 12 or 13 years ago I first noticed a slight tightening in my thigh muscles. I was still walking 2-3 miles a day for exercise. I used to walk faster than almost everyone else. Gradually, I found when I walked with someone else, I started having problems keeping up with them. I also have bad arthritis and have had several joint replacements. With each doctor I saw I mentioned the increasing tightness/weakness in my thighs. No doctor or therapist had a definitive answer. My walking kept getting harder and harder, yet no medical providers could tell me what was wrong with my legs.
After moving to a new town, I got a new doctor. She not only listened to me, she referred me to a neurologist. He examined a nerve conduction study I'd had done, he tested my strength and pain sensitivity, and spent a lot of time examining all my medical/hospital records. His conclusion: Axonal Peripheral Neuropathy. "Finally, a diagnosis!"
My present doctor sent me to a physical therapist who specializes in these problems. I went to her for several months. She also gave me a set of exercises, which I try to do every other day. They're not a cure, but they do seem to have slowed down the progression of the problem.
I'm still able to walk, though very slowly and not very far. For longer walks outside, I use a walker with a seat, so if my legs give out, I can sit down and rest.
I don't know what the future will be, but it is reassuring to at least know what is wrong with me. It's also reassuring to know that others have the same problem, and I can read about how they are coping with it on this website.

Thanks to everyone who shares their stories I have had central pain or thalamus pain syndrome
since two months (approx) after my stroke in 2018. Have tried
pain management specialist, a dedicated neurologist, and anyone else who could help
No medications, including med marijuana, acupuncture, PT,
meditation , etc have had any effect on the pain. Wondering if their are any open studies being conducted, related to CPS
Thank you

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.

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/.

Hi….
Thanks!

Do your symptoms get worse and stay worse after being exposed to cold temperatures!

Have u tried tens or red light therapy?

Hello, @gcattnu ~
I, too, have sensitivity to cold, especially in my feet, and to a lesser degree, my hands. My diagnosis was distal symmetric axonal-demyelinating sensorimotor PN, and I am currently receiving the deep-tissue (Class IV) red light therapy from my physical therapist. In fact, I have had these treatments for at least two years.
However, she also introduced me to BEMER therapy about a year ago and I have found that this gives me more of a feeling of over-all wellness (or at least betterness!!) like none of the other therapies that I've tried. The acronym stands for Bio Electro Magnetic Energy Regulation and in a nutshell it reintroduces blood flow into the tiny veins and capillaries that no longer enjoy that source of oxygen and nutrients (because of age?) that the main veins still receive. A better explanation than I can give can be found on the BEMER website. As an aside, I also have a large heating pad under the fitted sheet and I sleep with that on the high (but not highest) setting all year long. I do believe that there are more benefits than warmth to opening all those tiny veins that are meant to function as carriers of oxygen and nutrients, so I'm all on board with this.
It's another idea for you - hope you are able to find relief!
Barb

I'm not sure yet. I have Peripheral Neuropathy but I have never taken any tests. I have had neuropathy for the last three-four years, and during that time the attacks have been slowly growing in intensity. I am a married 87 year old woman and in good physical shape outside of the neuropahthy and scoliosis. I have an adult three-wheeler bike that I ride for an hour 3-4 days a week. A retired librarian, I live with a 90 year old husband and a cuddly cat. (The husband isn't so cuddly anymore.) I still play golf once a week and read books every day. I volunteer at our local library which keeps me well supplied with reading materials. I have a busy and comfortable life. What I don't have is much information about neuropathy and how to manage the pain. That's why I have joined this discussion group. Already it feels good to know I am connected with folks who share my concerns. Always nice to know one is not alone.