Living with Neuropathy - Welcome to the group

Welcome @councilman, I'm 79 and share your experience. I have small fiber peripheral neuropathy. I shared my story in another discussion here – Member Neuropathy Journey Stories: What's Yours? – https://connect.mayoclinic.org/comment/310341/.

Have you been diagnosed with neuropathy?

I was diagnosed with neuropathy over ten years ago. My neurologist has continued to tell me there is no treatment for my symptoms. I have some numbness in my feet and a little in my fingers. My major problem is balance, which has gotten significantly worse in the last couple of years. I now have to use a walking stick any time I go out and sometimes use a rollator. I go to a new neurologist in July(who has recently come to Duke after six years at Mayo) and hope she can tell me something that will help. Have any of you found anything that helps with balance issues?

Hi Coleen, My name is Mary Munro. I am 74 years of age. I live in the Pacific Northwest. My neuropathy stems from a motor vehicle accident in 2017. I have nerve damage in all areas of my spine, but so far, neuropathy only in my legs.
I tried various materials, thread count, weaves of materials on which I could rest or cover my legs and not feeling like I was taking what was already akin to being ablaze, and adding a bed of nettles . Nothing worked. Bedding hurt. Clothes hurt. I asked my medical team if people went mad with this. There was no respite in sight. Then one day, I saw possible salvation in a fur coat I had hanging in my closet. I tried it. The fur felt glorious against my skin. It soothed rather than irritated. I could pull the sides of the coat up over my legs if they were chilled. The fur did not feel like I just dropped an anvil on my legs. This was heaven.
Then I started thinking about the many other suffers of neuropathy. How could I get them the same relief? Not everyone just happens to own a fur. What if this is a fluke and doesn’t work for anyone else but me? I have seen the use of mouton for bedridden patients so as to avoid bedsores. My idea has some already proven merit.
The thing with using my coat is that there isn’t the right kind of structure to continue without harming the pelts of fox. There are furriers that will convert a coat into a blanket or stole, but the cost is around $1,000. The cost of a fur blanket is around the same . The fur is then attached to a batting that provides a sturdy enough structure to the many pelts that make up the piece. With a coat, there is just a lining.

I have a mink coat that I will donate to someone who would like to try this to see if they get the relief I did. Then perhaps I could go about getting furs donated and funds to convert to blankets. “Furs for Nerves”. If you have a candidate or if someone from the forum wants to volunteer, I can ship it out. They can try it for a while, see if they get relief. Then perhaps a start on getting donated furs to individuals.
I am not making any sense.

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Thank you.
I invite anyone who suffers from a constant burning sensation with their legs and would like to see if resting them on a fur gives them some relief to post an email through the Mayo Clinic protocol. I have a spare that I would be happy to send to you. I would only ask that you share your experience with me to see if this might be a road to some relief to the thousands of neuropathy suffers. There are a lot of old fur coats hanging in closets that could be of help.

Hello , I wasn’t sure if this is the right group for small fiber neuropathy also.. I’m really struggling this is all new to me since March/April..

Yes. My fingertips are numb. I was told it is due to carpal tunnel. It makes my hands very clumsy. I knock things down or spill because I don’t know where they are. Does that make sense to you?

I think mine is due to neuropathy. Going to experiment with stimulation treatments. I’ll post results.

Good evening @mamabear143. Welcome to Connect and you are absolutely in the right group for small fiber neuropathy. Before I introduce you to others with SFN, please tell me about your diagnosis. Did you have a skin punch biopsy? Was last March the time when you began treatment and/or medication to help with the symptoms of SFN?

My story is now quite lengthy as I have been coping with SFN for at least five years. I can assure you that I have learned a lot from this amazing group of caring and compassionate, folks also for five years. Knowledge is power and we are all advocates of sharing experiences.

What would you like to know about right now? What is at the top of your list?

May you be free of suffering and the causes of suffering.
Chris

Hello,

I am a music teacher from southern California, and I have a new student who is looking to play piano but has neuropathy in both hands due to her having gone through chemotherapy as a child.

She is very talented and can play very well for being somewhat new to the piano, but it causes her pain to actually press the keys during our lessons, and I assume during her practice at home.

I was trying to think of some exercises we could do to help reduce the pain she feels, and hopefully make the process a bit easier on her hands, do any of you have any advice I could take to our next lesson? I have a few ideas already, but I figured I'd want to ask some people who actually have the condition to help me before I went through with anything considering I'm not a physical therapist.

Thank you very much for your time,

Olivia