Living with Neuropathy - Welcome to the group

I can barely write this, I am so filled with sadness for your pain. How do you even stay sane???? I too live with pain to the point of nausea. And my arms have been somewhat responsive to Gabapentin, ice packs, and topical cannabis.

I want to send you to your doctor with some good wishes for a solution to finding some comfort and hope for your future. I will wait anxiously for you to check in tomorrow if you are feeling up to it. Do you have your list ready? Are you seeing a specialist?

At your age.....we have to work hard to improve your quality of life. I am 79 and believe that my condition is the result of way too much trauma. Mine were things like falling off horses and spending hospital days in a body sling about 12 inches off the bed. Then there was falling down the mountain and being jumped on from a raft in the ocean which led to surgery and 6 months in a body cast.

I will be here for you tomorrow.
Chris

And by the way.......my longest friendship is with another Karen. We have been connected since we were in first grade when her mother was my teacher. That is 73 or 74 years. Tomorrow......

Hi Chris,
Your stories are so riveting yet so tragic!! I’m so sorry you suffered thru so much pain for so long…that’s terrible but remarkable strength you have! Sorry you have so much nausea too 🙁 I am grateful you can relate tho, please find encouragement in that your struggles are helping others to find peace in their own. Aww that’s so neat about your friend, Karen!! 🙂 what a special treasure she must be…I’m in awe, such blessings.
I have a friend who uses cannabis and has recommended to me to try, but how to know which one? Does it help you a lot? What helps you to sleep? Any daily functioning tips or tricks you could share? I am glad to be ambidextrous so I can switch between hands when one bothers me more than the other.
My neurologist appointment this morning was decent. Bloodwork was all good. He said all 3 biopsies came back positive and 2/3 showed absence of sweat glands (?). He said next step is to determine the cause, but symptoms and damage may be permanent. He sent off saliva for genetic testing and said pending those results would determine next tests. He said to increase gabapentin in the meantime. My main frustration is being able to work, do daily tasks, stay active and enjoy life again. I try not to let my pride get in the way bc I have to remember I can no longer function at normal par…

Thanks for listening,
Karen

Hi Bill!
Oh wow!!! That is very interesting and gives me so much hope! Do you know or remember what the name/type of splint was? I used to work for an orthotics/prosthetics company and still have valuable connections there, so I could probably get one made. I am interested to trial your theory and see how it might work for me, and I’m curious about the intricate design/workings of this splint. Do you think it could still work for me, even tho it’s been so long?
Thank you so much for your encouragement, I’m glad you’re here!
Karen

Hi Bill!
Oh wow!!! That is very interesting and gives me so much hope! Do you know or remember what the name/type of splint was? I used to work for an orthotics/prosthetics company and still have valuable connections there, so I could probably get one made. I am interested to trial your theory and see how it might work for me, and I’m curious about the intricate design/workings of this splint. Do you think it could still work for me, even tho it’s been so long?
Thank you so much for your encouragement, I’m glad you’re here!
Karen

Hi Karen. I just entered brownmed.com and discovered they are carried by Walmart
If we opened the same Walmart page, It's blue, and the 4th item on the right.
BillU

I found the item, thanks so much for sending that info over. Will see what I can do!

I’ve been dealing with polyneuropathy for last few years, I’m interested to find out if anyone has used Ketamine infusion therapy for treating chronic leg & feet pain related to polyneurophy.?

Where should I begin? I'm 56 years old and currently living with (not dying from) Metastatic Breast Cancer (MBC). It is in remission currently for almost four years now. I had an earlier stage initially since late 2013. Now, after years of treatment I am being diagnosed with sensory neuropathy which so far oncologist does not feel is caused (solely at least) by the chemo drugs I've had through these years. She believes this because after stopping what we thought was the culprit, my symptoms only got worse despite many months of gabapentin.Now a neurologist is testing me further. I have an EMG scheduled for all four limbs as deep tendon reflexes are absent in all limbs. My pain, numbness, etc is terrible and the weakness especially in my lower legs (knee down) is affecting my entire life. I have learned to cope with a terminal cancer dx, but the limitations I have now has made facing each day a challenge. Even through cancer treatment, I hiked and stayed active. Now I am battling depression, anxiety, and fighting the urge to just sleep. Even typing this out is exhausting and difficult. I will know more next month about my dx. Just feel I may need a bit of guidance from people who are going through similar. Thank you