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Living with Neuropathy - Welcome to the group
Welcome to the Neuropathy group.
This is a welcoming, safe place where you can meet other people who are dealing with neuropathy. Let’s learn from each other and share stories about living well with neuropathy, coping with the challenges and offering tips.
I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by volunteer patient Mentor John (@johnbishop) and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.
We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself? What concerns would you like to talk about?
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I have had Idiopathic Small Fiber Neuropathy in my feet for over 3 1/2 years. Took Gabapentin, Duloxetine and Pregabalin for the pain and got no real results. Currently for the past 2-3 months taking nothing. I have long periods of flares were my pain cant get pretty bad and then I get these periods of what I would call remission were I have very little or no pain at all. Anyone suffer from the same on and off symptoms of PN? I have no clue what my triggers are.
Hi @dbchip, There are a couple of discussions with symptoms similar to yours that you might find helpful:
-- Neuropathy that comes and goes: https://connect.mayoclinic.org/discussion/neuropathy-that-comes-and-goes/.
-- Neuropathy symptoms come and go - is this typical?: https://connect.mayoclinic.org/discussion/neuropathy-symptoms-come-and-go-is-this-typical/
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1 ReactionSorry about what's going on with you. This is a complete guess on my part, but you might want to keep an eye on if the sensitivity turns into numbness which may indicate a form of neuropathy. As for shoes, you might look into finding an athletic store with knowledgeable staff (very hard to find) and mention you need walking/running shoes that help with sensitivity/numbness maybe. Socks also make a difference. I am lucky in the sense there is only one such store about 15 minutes away from me in the area here in Akron, Ohio. Beginning May I will be talking to my neurologist more about shoes and socks since my neuropathy is progressing very fast.
Thanks ..good advice …socks are important as you mention ..as are sports shoes ..Before b/c ski boots and right fit was so important..now years later, its neuropathy..go figure..
Neuropathy is mainly caused by alcohol. It robs nerves of their insulating MYELIN. I learned about myelin after getting trigeminal neuralgia from blowing my sax too much as an 82 yr old. I have an artery rubbing on the trigeminal nerve . It has rubbed off myelin in one spot. If I like to pay $50,000 a brain surgeon will happily insert a packer between.
In the meantime pain is stopped with cabamazepine. Waiting on an MRI to confirm. Could be crowns to two cracked molars is the cause. Try heaps of METHYL COBALAMIN B12. And stop alcohol.
Good luck.