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

Posted by lorirenee1 @lorirenee1, Sat, Mar 30 6:19pm

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……

Guess I'm in the same boat as you.. It just isn't fun being sick all the time, but looking so normal.. I, too, am a cheerful person and always trying to laugh and make those around me feel good.. The Neuropathy does affect my walking and balance now that it's progressed up my legs to my thighs. I recover quickly from the wobblies and pretend it never happened.. I also have the hot red burning feet (Erythromelalgia!) and that keeps me off my feet most of the time. That wakes me in the early morning hours and I have to get in the cold shower til they settle down. Also, when my feet get too cold, they will behave the same way as when hot – so that doesn't help either..
I'm at the stage now that I'm so angry at all the doctors that I've seen over the years who just shook their heads and did nothing for me to prevent this. That was the reason for going to them in the first place.. I could feel it progressing and wanted to stop it before it went further.. Sorry, but I'm so downhearted and feeling so very sorry for myself just now.. have lost my smile

REPLY

@lorirenee1 and @hotfooted while I don't have pain with my neuropathy the numbness does bother me and I have balance issues that I have to be careful when I first stand up. I find what really helps me is focusing on a task or something I like to do to keep my brain thinking about something else. Here's a great site with some short positive videos that have helped me change the way I think about things.
https://www.resilientoption.com/
Sending some happy thoughts your way my cyber friends….

REPLY

Thanks so much for the site! Lori Renee

REPLY
@hotfooted

Guess I'm in the same boat as you.. It just isn't fun being sick all the time, but looking so normal.. I, too, am a cheerful person and always trying to laugh and make those around me feel good.. The Neuropathy does affect my walking and balance now that it's progressed up my legs to my thighs. I recover quickly from the wobblies and pretend it never happened.. I also have the hot red burning feet (Erythromelalgia!) and that keeps me off my feet most of the time. That wakes me in the early morning hours and I have to get in the cold shower til they settle down. Also, when my feet get too cold, they will behave the same way as when hot – so that doesn't help either..
I'm at the stage now that I'm so angry at all the doctors that I've seen over the years who just shook their heads and did nothing for me to prevent this. That was the reason for going to them in the first place.. I could feel it progressing and wanted to stop it before it went further.. Sorry, but I'm so downhearted and feeling so very sorry for myself just now.. have lost my smile

Jump to this post

Sometimes all you can do is feel sorry for yourself, and frankly, I think it is very normal when you have serious illness. I go in the bathroom, and I just cry. Then I get back up again. I try to do things I love, and try to be with people I love. The pain knocks me down again. And for you, it sounds like the burning, firey feet…..and way, way, way more. Just having people seeing you as normal is exhausting. Balance that is way off is exhausting. I have it too. What can I say? I try to find the things and people I love. as best I can.

REPLY

I think many of us are in the throes of constantly dealing with chronic pain. You never know when it will get worse, it’s hard to focus on anything else and everyone tells you how great you look. Medications do not work. While I have a ridiculously obvious reason for my neuropathy, it took 4 years to get a doctor to actually listen. In which time the progression of nerve damage was severe and likely irreversible. I too was so full of life and energy. Not now. This is not for the faint of heart. And to think 20+ million Americans have neuropathy. We spend nearly zero dollars researching one of the biggest health issues in this country. Anyway. That’s my ten cents 🙂

PS – I have not given up. And I never will.

REPLY

I have profound neuropathy, and must wear leg braces and walk with walker. I have constant pain from severe degenerative disk disease (arthritis of the neck).

I recommend "How to Be Sick' by Toni Bernhard. It is a guide to acceptance and joy: learning to live with chronic conditions and pain.

Regards, ElaineD

REPLY
@johnbishop

@lorirenee1 and @hotfooted while I don't have pain with my neuropathy the numbness does bother me and I have balance issues that I have to be careful when I first stand up. I find what really helps me is focusing on a task or something I like to do to keep my brain thinking about something else. Here's a great site with some short positive videos that have helped me change the way I think about things.
https://www.resilientoption.com/
Sending some happy thoughts your way my cyber friends….

Jump to this post

@johnbishop I love this website. I had forgotten about it, but I bought Dr. Sood's books on creating resilience from Mayo and they are so interesting. I have learned a lot from him. These are books that help you look at why you think the way you do. The Books are the Mayo Clinic Handbook for Happiness, and the Mayo Clinic Guide to Stress Free Living.
https://marketplace.mayoclinic.com/shop/healthy-lifestyle/book/mayo-clinic-stress-management-combo_752700

REPLY
@dwilkin

I think many of us are in the throes of constantly dealing with chronic pain. You never know when it will get worse, it’s hard to focus on anything else and everyone tells you how great you look. Medications do not work. While I have a ridiculously obvious reason for my neuropathy, it took 4 years to get a doctor to actually listen. In which time the progression of nerve damage was severe and likely irreversible. I too was so full of life and energy. Not now. This is not for the faint of heart. And to think 20+ million Americans have neuropathy. We spend nearly zero dollars researching one of the biggest health issues in this country. Anyway. That’s my ten cents 🙂

PS – I have not given up. And I never will.

Jump to this post

I am so sorry. It is so hard. Not for the faint of heart is right. You cant take one moment that you are pain free for granted. What a life this is…

REPLY
@jenniferhunter

@johnbishop I love this website. I had forgotten about it, but I bought Dr. Sood's books on creating resilience from Mayo and they are so interesting. I have learned a lot from him. These are books that help you look at why you think the way you do. The Books are the Mayo Clinic Handbook for Happiness, and the Mayo Clinic Guide to Stress Free Living.
https://marketplace.mayoclinic.com/shop/healthy-lifestyle/book/mayo-clinic-stress-management-combo_752700

Jump to this post

@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 ☺

Liked by Jennifer Hunter

REPLY
@elained

I have profound neuropathy, and must wear leg braces and walk with walker. I have constant pain from severe degenerative disk disease (arthritis of the neck).

I recommend "How to Be Sick' by Toni Bernhard. It is a guide to acceptance and joy: learning to live with chronic conditions and pain.

Regards, ElaineD

Jump to this post

Elaine, Thankyou, thankyou, thankyou, for this book. I will get it from my local library. I am so sorry for how sick you are. I empathize. I do not know what to say. I am feeling you. God bless. Lori Renee

REPLY
@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 ☺

Jump to this post

@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

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 .

REPLY

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
@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

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 !!

REPLY
@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 !!

Jump to this post

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

REPLY
Please login or register to post a reply.