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Ray Kemble avatar

Living with PN, do you find yourself retreating from life?

Neuropathy | Last Active: Mar 5 10:44am | Replies (144)

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Profile picture for Jim, Volunteer Mentor @jimhd

@ray666 I'm fortunate, I guess, not to have such an issue with balance. Though I'm still relearning my gait after having bilateral Achilles tendon ruptures at Christmas, '23. Thank you fluoroquinalone for destroying the tissue in both tendons. I had the first tendon rebuilt in June, and the other in December, '24. After months of therapy I had a knee replacement, more PT and gait & balance work.

I have small fiber pn, technically CIDP, so I'm the one with the pain from my toes to my knees.

To answer your original question, yes, it has affected my lifestyle. A couple of times a day I lie down in my bed to calm down the pain in my feet. I don't walk more steps in a day than necessary. If a store has an electric shopping cart, I use it and immediately become invisible to other shoppers. They walk right in front of me and hog the aisles. I have to yield to pedestrians. One of these days I'll work up the nerve and take the right of way and let them deal with it.

We don't get out of the house much, except for groceries and doctor appointments and church. No more hiking or backpacking 🥺. If I have to walk very far I use my cane. It also helps to use my walker, as it takes some of the pressure from my feet, but I only use that at home. I'm grateful for the ramp my neighbor built when my Achilles tendons ruptured. I still use it. When I have groceries to carry in, I use my garden cart up the ramp, through the house, to the kitchen. Stairs are not good if I'm carrying something.

I'm thankful that I don't have problems with balance like you and many others, but let me tell you, PN pain is hard, both physically and emotionally. I wish there were a cure.

Jim

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Replies to "@ray666 I'm fortunate, I guess, not to have such an issue with balance. Though I'm still..."

As you say, Jim: "I'm thankful that I don't have problems with balance like you and many others, but let me tell you, PN pain is hard, both physically and emotionally." If I had had a choice (of course, I didn't), I'd have chosen my large-fiber PN with its balance miserable uh-ohs, rather than PN with pain. I've no doubt what you're enduring –– and so many others, too –– is hard, both physically and emotionally. In time, with chiefly bad balance with which to contend, you develop techniques": go slow, hold on, use a cane or a walker, ask for help when help is needed. In those ways, large-fiber PN becomes at least marginally manageable. // I wish you the very best, Jim! Thanks for posting! ––Ray