1. < Neuropathy

Dose anyone else feel like neuropathy is taking over their life?

Posted by annregister @annregister, Apr 11, 2023

I am in search of others that are in the same pain as I am. I feel like that the neuropathy has taken over my life. I have finally been diagnosed after four years, with axonal sensorimotor polyneuropathy and small fiber neuropathy. I also have Raynaud’s. Sometimes I feel like, because there’s no boo-boo or Band-Aid that people can see, others do not understand the every day every night pain that I am in. I am a first grade teacher, I love to draw I love to paint I love to be in the garden, I have a new grandbaby …. However, I can’t stand for long periods of time. I’m no longer able to drive, because of the no-feeling in my hands and feet. I can’t even hold a pencil for a long period of time, because my hands go numb and then I drop the pencil. I walk with assistance, for fear of falling, because of no longer feeling my feet. I have tried all of the go to medication‘s that my neurologist has suggested, however none have worked. Gabapentin; the worst of them all, has taken my ability to think as quickly as I need to, to be an affective first grade teacher. I am not able to process or communicate as well as I should be able to. Lyrica; was another medication that gave me dark thoughts. And, on top of those medication’s, my body does not handle narcotics very well, so I just deal with the pain day in and day out. I am just at a loss. Is anyone else out there that feels the same as me?

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julbpat | @julbpat | Aug 1, 2023
In reply to @dbeshears1 "I feel for you. My arms got so bad while sleeping that I wear long wrist..." + (show)
@dbeshears1

I feel for you. My arms got so bad while sleeping that I wear long wrist supports to bed every night, at the suggestion of folks on here, especially @johnbishop . Something turns my arms “off” very easily, and some stools (especially metal) seem to turn my legs off sometimes. It’s almost like a switch that turns the power completely off in my arms or legs, and takes a while to shake it off and get the current flowing again. It seems my nerves must be easily compressed. I can’t sit at a computer for long. It seems no matter how I position my arms, elbows, or wrists, they become unusable very quickly, and I try them out often, can’t stay on a computer more than 15 minutes at a time. My last EMG on one arm and leg for PN was 2+ years ago, and I recall a note to the effect that due to PN, carpal tunnel couldn’t be distinguished but was possible. But my fingers really affected are my pinky & ring fingers on both arms, and I know those are the ulna nerve system vs carpal. But either way, they say it’s PN and I need to live with it, so I took the advice on buying wrist/forearm supports for sleeping, and I have had a 95% improvement in not waking up with the dead, non-moving arms from compressing them while I sleep!

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I am currently sleeping with wrist supports, which is very annoying, but helps tremendously. I have been diagnosed with carpal tunnel in both wrists and one elbow, by EMG. I’m about to see the hand surgeon to get some steroid shots for these areas. I want to do everything before I consider carpal tunnel surgery. My overall SFN pain is a little worse right now, so it makes sense that my hands are bothering me more. Just talked to my neurologist yesterday about trying some different meds.

REPLY
harley22 | @harley22 | Aug 2, 2023

I can really sympatize with you as I have same issues as you do.
Having foot pain daily, is killing me.
Both of my feet are numb, and with pins and needles in them.
Forget my balance, I have none, and feel like a weeble.
None of the meds I have taken in the past helped with my pain and numbness.
I have seen numerous docs, and no one can help me.
All they say is that I have CIDP, cause unknown.

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