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John, Volunteer Mentor
@johnbishop

Posts: 2977
Joined: Mar 22, 2016

Any caregivers for peripheral neuropathy?

Posted by @johnbishop, Sep 11, 2016

I have small fiber peripheral neuropathy but am fortunate that I only have numbness and some tingling in my legs and feet. I ran across an older New York Times article that explains what a person with PN feels/goes through. Thought this might be helpful for those that don’t know what it’s like. http://www.nytimes.com/2009/10/20/health/20brod.html?mwrsm=Email

REPLY

Hi @johnbishop. I have some of the symptoms, but at this point it has been diagnosed as just severe carpel tunnel. Resulted from many months of repetitive lifting. Losing the feeling in my fingers along with intense pain at night if I forget to put on my splints.

Also — blew out a knee so until I get that fixed I’ve lost feeling in about half my left foot. Thankfully I am in with a knee doc next week.

Different reasons, but some similarities.

It really caused me some caregiving challenges.

Peace and strength,

@IndianaScott

Hi @johnbishop. I have some of the symptoms, but at this point it has been diagnosed as just severe carpel tunnel. Resulted from many months of repetitive lifting. Losing the feeling in my fingers along with intense pain at night if I forget to put on my splints.

Also — blew out a knee so until I get that fixed I’ve lost feeling in about half my left foot. Thankfully I am in with a knee doc next week.

Different reasons, but some similarities.

It really caused me some caregiving challenges.

Peace and strength,

Jump to this post

Hi Scott. I can relate to the carpal tunnel. My PMR came out of a 6 year remission about a month ago. I’m a side sleeper and would go back and forth all night long – waking up with my left arm asleep down through my hand then shaking it off and rolling over on the other side and doing the same thing all over again. Had to go back on 20 mg of prednisone which toned down the PMR but the doc also told me I have ‘severe’ carpal tunnel in my left hand and some in my right hand. I did the EMG routing and saw the hand doc and she gave me some options. Didn’t want the surgery right now as had some events coming up that I need to use my hands so I opted for a steroid shot in the wrist which didn’t seem to do much. The same hand shows the left thumb with severe arthritis. I will probably opt for the carpal tunnel surgery if the pain gets too bad. Right now I’m transitioning off the prednisone but not at a very fast pace – week 3 of 21 week schedule. So far the peripheral neuropathy has not affected my hands which is a good thing.

Hopefully you will get some relief soon when you see the knee doc.

John

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