1. < Neuropathy

Have You Made Any Kind of Peace With Having Your Neuropathy?

Posted by lorirenee1 @lorirenee1, Mar 30, 2019

Because I am often in pain, I am not at peace with being sick. I would love a way to be more peaceful and accepting in spite of illness. I do not know how to do this. I have humor "shtick" to make people laugh. I find I don't enjoy it as much as I used to. This saddens me, because my life was laughter and helping people enjoy themselves. Now I am internal. It kills me. It is not who I am......

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Mentor
Jennifer, Volunteer Mentor | @jenniferhunter | Mar 31, 2019
In reply to @johnbishop "@jenniferhunter I had the opportunity to hear Dr. Sood speak in Rochester a few years ago..." + (show)
@johnbishop

@jenniferhunter I had the opportunity to hear Dr. Sood speak in Rochester a few years ago and it was definitely an eye opener for me in learning some tips on how the brain works and how we can influence how we feel. He mentioned his old website stressfree.org which has since changed to resilientoption.com. I've looked at the books but still have a Mayo Healthy Aging book that I need to get through ☺

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@johnbishop That must have been an inspired talk. Dr. Sood inspires me. I wish I had found those books when I was confronting my fears and stress about going through surgery. I invented my own coping strategies, but reading his books later explained why my methods worked. I was associating anything I could about my situation and specifically the doctor with positive emotions and using music and art to make that association. I essentially retrained my brain to like my doctor and think about him first as a kind compassionate person instead of the doctor that he is. That helped a lot and I found an inner peace that helped me get through all of it.

REPLY
dancermurphy | @dancermurphy | Apr 4, 2019

I am not at peace maybe because it is fairly new to me and still hoping it goes away . On Horizant but feel to much stabbing all over my whole body tonight . It saddens me that this might be for the rest of my life .

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sadfeet | @sadfeet | Apr 4, 2019

I have neuropathy in my feet from chemotherapy. My oncologist told me at the time I was crazy and my chemo (Adriamycin) did not cause neuropathy even though my feet and legs felt like I was being electrocuted with every dose. That is another long story.( She is a horrible person and should not be a doctor!)
I feel the electricity like feeling in my feet 24 hours a day. And no I have not made peace with it. It is more like somedays I tolerate it better than others. Sleep helps. (I have to take medication to fall asleep). If I slept well the night before I have more energy to stay distracted during the day. The more I distract my brain the less my brain will pay attention to my feet. It is hard because we don't have the energy to constantly do that. I feel it the most when I am sitting still at the computer or trying to read a book or any time at rest. Everyone in my life knows about my neuropathy but there is nothing they can do. It is very isolating to deal with on my own every day. So every day is a new challenge on how my coping mechanisms will be. Also having to worry about the cancer showing up again is another weight on my mind. It is like mental gymnastics trying to deal with it every day and try and put on a happy face for my family and friends. So no peace but just coping.

REPLY
2 replies
dancermurphy | @dancermurphy | Apr 4, 2019
In reply to @sadfeet "I have neuropathy in my feet from chemotherapy. My oncologist told me at the time I..." + (show)
@sadfeet

I have neuropathy in my feet from chemotherapy. My oncologist told me at the time I was crazy and my chemo (Adriamycin) did not cause neuropathy even though my feet and legs felt like I was being electrocuted with every dose. That is another long story.( She is a horrible person and should not be a doctor!)
I feel the electricity like feeling in my feet 24 hours a day. And no I have not made peace with it. It is more like somedays I tolerate it better than others. Sleep helps. (I have to take medication to fall asleep). If I slept well the night before I have more energy to stay distracted during the day. The more I distract my brain the less my brain will pay attention to my feet. It is hard because we don't have the energy to constantly do that. I feel it the most when I am sitting still at the computer or trying to read a book or any time at rest. Everyone in my life knows about my neuropathy but there is nothing they can do. It is very isolating to deal with on my own every day. So every day is a new challenge on how my coping mechanisms will be. Also having to worry about the cancer showing up again is another weight on my mind. It is like mental gymnastics trying to deal with it every day and try and put on a happy face for my family and friends. So no peace but just coping.

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I hear you I feel like I am in a invisable prison chamber of pain . For me it is all over my body after a neck surgery . Surgeon could care less !!

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1 reply
sadfeet | @sadfeet | Apr 5, 2019
In reply to @dancermurphy "I hear you I feel like I am in a invisable prison chamber of pain ...." + (show)
@dancermurphy

I hear you I feel like I am in a invisable prison chamber of pain . For me it is all over my body after a neck surgery . Surgeon could care less !!

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I hear you too! I am sorry that you are dealing with this. I know each day is a challenge.

REPLY
lois6524 | @lois6524 | Apr 5, 2019
In reply to @sadfeet "I have neuropathy in my feet from chemotherapy. My oncologist told me at the time I..." + (show)
@sadfeet

I have neuropathy in my feet from chemotherapy. My oncologist told me at the time I was crazy and my chemo (Adriamycin) did not cause neuropathy even though my feet and legs felt like I was being electrocuted with every dose. That is another long story.( She is a horrible person and should not be a doctor!)
I feel the electricity like feeling in my feet 24 hours a day. And no I have not made peace with it. It is more like somedays I tolerate it better than others. Sleep helps. (I have to take medication to fall asleep). If I slept well the night before I have more energy to stay distracted during the day. The more I distract my brain the less my brain will pay attention to my feet. It is hard because we don't have the energy to constantly do that. I feel it the most when I am sitting still at the computer or trying to read a book or any time at rest. Everyone in my life knows about my neuropathy but there is nothing they can do. It is very isolating to deal with on my own every day. So every day is a new challenge on how my coping mechanisms will be. Also having to worry about the cancer showing up again is another weight on my mind. It is like mental gymnastics trying to deal with it every day and try and put on a happy face for my family and friends. So no peace but just coping.

Jump to this post

Your oncologist is wrong, even though she denies it -- your doctor should have changed you to a different chemo once you told her of your pain when you were doing chemo. It is so sad the oncologists don't realize that certain chemo treatments will cause neuropathy. For anyone who is in a similar situation, please work closely with your oncologist. It is terrible enough to battle cancer, but then to have neuropathy on top of it. Not good !!

REPLY
1 reply
sadfeet | @sadfeet | Apr 6, 2019
In reply to @lois6524 "Your oncologist is wrong, even though she denies it -- your doctor should have changed you..." + (show)
@lois6524

Your oncologist is wrong, even though she denies it -- your doctor should have changed you to a different chemo once you told her of your pain when you were doing chemo. It is so sad the oncologists don't realize that certain chemo treatments will cause neuropathy. For anyone who is in a similar situation, please work closely with your oncologist. It is terrible enough to battle cancer, but then to have neuropathy on top of it. Not good !!

Jump to this post

My oncologist told me it was all in my head. She had to cover herself when I got worse and lie to everyone.

REPLY
sadfeet | @sadfeet | Apr 7, 2019

I tried Scrambler Therapy. It did not help.

REPLY
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