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……

@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
@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

You gotta love that !!

Liked by sadfeet

REPLY

Has anyone tried Sanexus ?

REPLY

I tried Scrambler Therapy. It did not help.

REPLY
@sadfeet

I tried Scrambler Therapy. It did not help.

Jump to this post

I have heard of Scrambler therapy, but never have known anyone who has tried it. Can you tell me a bit about it? I have severe neuropathy, and was thinking of trying it.

REPLY
@lorirenee1

I have heard of Scrambler therapy, but never have known anyone who has tried it. Can you tell me a bit about it? I have severe neuropathy, and was thinking of trying it.

Jump to this post

They put electrodes on my feet and legs to send different nerve signals to the damaged nerves so your brain may start to send non pain signals to the areas your are having pain. I think the problem was that I was the only patient they had tried at my clinic so they kept moving the electrodes around. I have read that better results are reported when the medical staff has more experience using the machine. I believe that the Mayo Clinic reported better results with more experience also. I did not have any improvement and had to pay out of pocket. It was worth trying though because you just never know what I might help. I keep searching and hoping for a cure!

REPLY
@sadfeet

They put electrodes on my feet and legs to send different nerve signals to the damaged nerves so your brain may start to send non pain signals to the areas your are having pain. I think the problem was that I was the only patient they had tried at my clinic so they kept moving the electrodes around. I have read that better results are reported when the medical staff has more experience using the machine. I believe that the Mayo Clinic reported better results with more experience also. I did not have any improvement and had to pay out of pocket. It was worth trying though because you just never know what I might help. I keep searching and hoping for a cure!

Jump to this post

Sadfeet….It is horrible that you had to pay for such inexperience and ineptitude. You must have a really good nature!
that would have made me upset. Thanks for the information. Lori Renee

REPLY
Please login or register to post a reply.