I am new here and just recently found out I have neuropathy.

Posted by granny73 @granny73, Jun 10 12:17pm

How do you deal with unpredictable neuropathy pain? I don’t have any meds for it yet. It hits my feet and calves of my legs.

Interested in more discussions like this? Go to the Neuropathy Support Group.

Profile picture for John, Volunteer Mentor @johnbishop

Welcome @van2604, Sorry to hear that you are not able to sleep due to the pain in your left hand. There is another related discussion that your husband might find helpful to connect with other members with the same condition to learn what they have shared.
-- Does anyone have CBS (corticobasal syndrome)?
https://connect.mayoclinic.org/discussion/cbs/
If it's an option for you, Mayo Clinic Jacksonville would be a good place to have your hand looked at. You can find more information here - https://mayocl.in/1mtmR63.

I have pain in my hands that sometimes keeps me awake but it's not connected with my neuropathy. I have carpal tunnel along with degenerative arthritis in both hands. Mayo Clinic has more information on carpal tunnel here - https://www.mayoclinic.org/diseases-conditions/carpal-tunnel-syndrome/symptoms-causes/syc-20355603.

Is the pain just in your left hand?

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@johnbishop It wasn’t in my hand. I’ve been very fortunate that neuropathy hasn’t been there yet. Just my feet and legs.

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Profile picture for deanhobart @deanhobart

@arcuri24 I thought you stated that the doc damaged your nerves? If so, just know that it takes 1 to 2 years because the regrowth is slow.

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@deanhobart
Thank you for reminding me about the slow regrowth of nerves. Because of my celiac and neuropathy my healing is probably even slower. Patience is not my forte. My neurologist prescribed lidocaine Rx patch and it helps me somewhat. He also said my prognosis for healing was "good." I am still trying to keep active and, unlike most folk, I am trying to gain weight. I just have to modify my exercise routine a bit. Because of the celiac I am hypersensitive to pain so I am hoping that as time goes on my pains will lessen. I am also taking vitamin supplements that support nerve growth and healing. Other than this shin business, I am in good health and my neuropathy does not bother me for the most part.

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Profile picture for arcuri24 @arcuri24

@deanhobart
Thank you for reminding me about the slow regrowth of nerves. Because of my celiac and neuropathy my healing is probably even slower. Patience is not my forte. My neurologist prescribed lidocaine Rx patch and it helps me somewhat. He also said my prognosis for healing was "good." I am still trying to keep active and, unlike most folk, I am trying to gain weight. I just have to modify my exercise routine a bit. Because of the celiac I am hypersensitive to pain so I am hoping that as time goes on my pains will lessen. I am also taking vitamin supplements that support nerve growth and healing. Other than this shin business, I am in good health and my neuropathy does not bother me for the most part.

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@arcuri24 Regarding the pain. Everything I've read is that it actually isn't 'pain' from, say, a traumatic wound but instead your brain misidentifying what the nerve signals mean. Your feet arent actually torn or on fire.

That's the rationale behind using electrostimulus to 'calm and redirect' the interpretation of the signals. I am thinking why swimming and walking around in the pool helps because it sort of 'averages' the pressure sensitivity throughout my skin so that my toes and feet don't feel so different than the rest of my body. Same with wearing compression socks. My numbness already feels like my feet are encased in socks, or like wearing snow shoes, that actually "seeing" the socks helps my brain remember what my feet normally would feel like once I take them off.

It is like touching an ice cube and feeling it burn as if it is too hot. But you can briefly redirect that feeling by remembering that it is actually cold. During the transition from being 'on fire' to 'freezing ', the pain sensation disappears. Just a thought.

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Profile picture for arcuri24 @arcuri24

@deanhobart
Thank you for reminding me about the slow regrowth of nerves. Because of my celiac and neuropathy my healing is probably even slower. Patience is not my forte. My neurologist prescribed lidocaine Rx patch and it helps me somewhat. He also said my prognosis for healing was "good." I am still trying to keep active and, unlike most folk, I am trying to gain weight. I just have to modify my exercise routine a bit. Because of the celiac I am hypersensitive to pain so I am hoping that as time goes on my pains will lessen. I am also taking vitamin supplements that support nerve growth and healing. Other than this shin business, I am in good health and my neuropathy does not bother me for the most part.

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@arcuri24 You are SO lucky your neuropathy doesn’t bother you. Mine is still new to me and it HURTS!! I am using hempvana nerve cream which helps.

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Profile picture for deanhobart @deanhobart

@arcuri24 Regarding the pain. Everything I've read is that it actually isn't 'pain' from, say, a traumatic wound but instead your brain misidentifying what the nerve signals mean. Your feet arent actually torn or on fire.

That's the rationale behind using electrostimulus to 'calm and redirect' the interpretation of the signals. I am thinking why swimming and walking around in the pool helps because it sort of 'averages' the pressure sensitivity throughout my skin so that my toes and feet don't feel so different than the rest of my body. Same with wearing compression socks. My numbness already feels like my feet are encased in socks, or like wearing snow shoes, that actually "seeing" the socks helps my brain remember what my feet normally would feel like once I take them off.

It is like touching an ice cube and feeling it burn as if it is too hot. But you can briefly redirect that feeling by remembering that it is actually cold. During the transition from being 'on fire' to 'freezing ', the pain sensation disappears. Just a thought.

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@deanhobart - There's a lot of good books out about neuroplasticity and rewiring the brain for neuropathy and other pain, really interesting topic but not sure how easily it's mastered. I just have the numbness and no pain with my idiopathic small fiber PN. @user_che214927 started a discussion on it and I think it has helped with his neuropathy - Neuropathy and Brain Neuroplasticity: https://connect.mayoclinic.org/discussion/barry-sheales-australia/

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Profile picture for John, Volunteer Mentor @johnbishop

@deanhobart - There's a lot of good books out about neuroplasticity and rewiring the brain for neuropathy and other pain, really interesting topic but not sure how easily it's mastered. I just have the numbness and no pain with my idiopathic small fiber PN. @user_che214927 started a discussion on it and I think it has helped with his neuropathy - Neuropathy and Brain Neuroplasticity: https://connect.mayoclinic.org/discussion/barry-sheales-australia/

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@johnbishop Dean, you are like me. I will most likely read a book about the brain but in the meantime I will be waiting for some help.

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Profile picture for deanhobart @deanhobart

@arcuri24 Regarding the pain. Everything I've read is that it actually isn't 'pain' from, say, a traumatic wound but instead your brain misidentifying what the nerve signals mean. Your feet arent actually torn or on fire.

That's the rationale behind using electrostimulus to 'calm and redirect' the interpretation of the signals. I am thinking why swimming and walking around in the pool helps because it sort of 'averages' the pressure sensitivity throughout my skin so that my toes and feet don't feel so different than the rest of my body. Same with wearing compression socks. My numbness already feels like my feet are encased in socks, or like wearing snow shoes, that actually "seeing" the socks helps my brain remember what my feet normally would feel like once I take them off.

It is like touching an ice cube and feeling it burn as if it is too hot. But you can briefly redirect that feeling by remembering that it is actually cold. During the transition from being 'on fire' to 'freezing ', the pain sensation disappears. Just a thought.

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@deanhobart

In a way that is what my lidocaine pain patch is doing--it creates a numbing sensation and the pain sensation is greatly reduced. Maybe I am getting better as the pain would radiate down my shin toward my ankle in past months but does not do so anymore. I am also able to avoid the heel burning pain I was getting by staying in highly cushioned sneakers and not doing too many heel raises. You are lucky to have access to a pool. In NYC it is mostly a concrete jungle and very very warm right now. I do not get numbness in feet , I am mostly getting tingling and the PN varies for many reasons like diet, exercise, stress, environment etc. Like the shin healing, it may take several years of being on a gluten free diet to reduce sensations of neuropathy. I am always reading food labels these days and cooking my own meals. Thanks for letting me know about the power of the brain in dealing with our nerves. Happy swimming!

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Profile picture for John, Volunteer Mentor @johnbishop

@deanhobart - There's a lot of good books out about neuroplasticity and rewiring the brain for neuropathy and other pain, really interesting topic but not sure how easily it's mastered. I just have the numbness and no pain with my idiopathic small fiber PN. @user_che214927 started a discussion on it and I think it has helped with his neuropathy - Neuropathy and Brain Neuroplasticity: https://connect.mayoclinic.org/discussion/barry-sheales-australia/

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@johnbishop does the book, about neroplasticity and healing have anything to do with neuropathy?

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Profile picture for granny73 @granny73

@johnbishop does the book, about neroplasticity and healing have anything to do with neuropathy?

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Yes

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Profile picture for granny73 @granny73

@arcuri24 You are SO lucky your neuropathy doesn’t bother you. Mine is still new to me and it HURTS!! I am using hempvana nerve cream which helps.

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@granny73
Yes, I was lucky until I had the shin shave biopsy where the dermatologist must have damaged peripheral nerves in my shin. The shin is one of the hardest places on the body to heal as there is not much fat there and it is not so near the heart so circulation of blood can be an issue. I am sorry that your neuropathy hurts. I have heard of hempvana--saw ads on Tv but have not tried it. For my shin I used Wise Men Healing Balm for nerve pain and now my neurologist has prescribed Lidocaine 5% Rx patch which I put over the wound site and it numbs out the pain. With celiac disease my brain interprets pain as being more pronounced. Have you found out what is causing your neuropathy? They say that it can be better treated once you know the cause.

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