Neuropathy moving from feet to legs

Posted by tessie63 @tessie63, May 15, 2023

I have neuropathy in my hands and feet from three sessions of chemo I had about three years ago now. I have a lot of pins and needles in both my hands and feet but no pain which is a blessing I guess. These pins and needles are none the less annoying. I drop a lot of things and am unable to open things without help. I live by myself and have had to formulate my own ways to do so many different things. I am now experiencing these pins and needles climbing up my legs and that worries me. Has anyone else experienced this? If so have they stopped there or is it possible for them to go else where in my body?

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

Wishing you to get better every single day!

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Good evening @mmksf, I see you have been dealing with some neuropathy symptoms for a while. At this point, you have no pain, just what I call tingle tangles. Unfortunately, my experience is quite similar. About 10 years ago, I had pines and needles in just the toes of my right foot and my fingers. They continued to spread until at this point, my feet are quite numb. In order to be able to drive a car, I have MFR (myofascial release) sessions twice a week. I have noticed that my legs are now impacted about halfway up to my knees. My fingers are quite tingly and I also tend to drop way too many things. Today it was the pantry container for pretzels and they spilled all over the floor.

Regarding opening jars .... I have seen some special tools that can help you. And, I am wondering if you have used Gabapentin and if that has helped put a lid on the pins and needles. Do you also notice an increase in the intensity of the feelings when the barometric pressure moves or decides to remain below 30? That can be accompanied by a sense of heaviness that goes above my knees.

The only area that sort of frightens me is my head. And I had that today. I know what it is and yet, it feels so uncomfortable that I worry about my brain.

Oh...I almost forgot, have you tried any topicals? I use a medical cannabis balm which does eradicate the feeling in my hands. I haven't found anything for my head. Have you tried cold or heat for momentary relief?

These symptoms seem to be somewhat common. Have you discussed your situation with a doctor? Do you have a neurologist or other type of specialist to help you?

Hopefully, other Connect members may be able to help both of us. Until then, there is comfort in not having the pain which can come with the pins and needles.

May you be safe, protected, and free of inner and outer harm.
Chris

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@artscaping

Good evening @mmksf, I see you have been dealing with some neuropathy symptoms for a while. At this point, you have no pain, just what I call tingle tangles. Unfortunately, my experience is quite similar. About 10 years ago, I had pines and needles in just the toes of my right foot and my fingers. They continued to spread until at this point, my feet are quite numb. In order to be able to drive a car, I have MFR (myofascial release) sessions twice a week. I have noticed that my legs are now impacted about halfway up to my knees. My fingers are quite tingly and I also tend to drop way too many things. Today it was the pantry container for pretzels and they spilled all over the floor.

Regarding opening jars .... I have seen some special tools that can help you. And, I am wondering if you have used Gabapentin and if that has helped put a lid on the pins and needles. Do you also notice an increase in the intensity of the feelings when the barometric pressure moves or decides to remain below 30? That can be accompanied by a sense of heaviness that goes above my knees.

The only area that sort of frightens me is my head. And I had that today. I know what it is and yet, it feels so uncomfortable that I worry about my brain.

Oh...I almost forgot, have you tried any topicals? I use a medical cannabis balm which does eradicate the feeling in my hands. I haven't found anything for my head. Have you tried cold or heat for momentary relief?

These symptoms seem to be somewhat common. Have you discussed your situation with a doctor? Do you have a neurologist or other type of specialist to help you?

Hopefully, other Connect members may be able to help both of us. Until then, there is comfort in not having the pain which can come with the pins and needles.

May you be safe, protected, and free of inner and outer harm.
Chris

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Thank you Cris for the quick answer! I use Lyrica. It’s similar to gabapentin. My understanding, and from my own findings, nothing does much for the numbness one gets from neuropathy. I have been reducing the Lyrica I take now because a higher dose did nothing for me. I am sorry to hear you have some tingling in the head now. I hope that goes away for you. I would be interested though in knowing the name of the balm you are using and I wonder if it is available in Canada. I am willing to try anything to get rid of the feeling in my hands. They always feel like there is bumps and granules all over them and it just affects my mental state so much. My feet are dropped from this also so I lost my drivers license and had to sell my car! That day was a low one in my life. My independence is fast leaving me! My husband, who was my best friend, has dementia so last November I placed him in a private care home. This was not only a difficult thing to do, but also a financially draining one. The government run homes here have a waiting list of two years but they are so poorly run that I wouldn’t put my dog in one. Life does go on and I try to find the blessings in my life now and not the negatives. I wish you all the best and if I find a magic cure for this numbness I will be sure to tell everyone. Thanks again for emailing me. Have a great day. Hugs

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Good morning @tessie63, and thank you for sharing more information about your life with neuropathy. Sorry is not a strong enough word for how I feel reading about the losses you have suffered. Do you have special tips and tricks you use to stay mentally healthy? Maybe a best friend, or group of friends. I have a meditation and mindfulness group of women who are loving, loyal, and supportive. We meet on Zoom every Thursday. And once a month we get together to celebrate and share.

I would like to introduce you to @johnbishop. He knows more about the numbness symptoms because he has no pain....just numbness. John, will you please share your experience? @tessie63, here is one of John's links that you can read while waiting for him to appear in person.
https://connect.mayoclinic.org/discussion/neuropathy-numbness-only-no-pain
May you be free of suffering and the causes of suffering.
Chris

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Hi @tessie63, I'm happy to see you've connected with @artscaping. I posted my neuropathy journey in another discussion here - https://connect.mayoclinic.org/comment/310341/. I wished I could tell you there is a magic fix for the numbness. If you aren't familiar with the Foundation for Peripheral Neuropathy here's a link to their page with some helpful information - https://www.foundationforpn.org/living-well/

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Thank you John for the information. I will check out the links you mentioned. One question for you though, with the numbness did you have the odd feelings in your hands like they had grit or little balls to roll around with your fingers. It is so strange and unsettling at times and hard to explain to others. My hands look normal to everyone! Thank you once again for your help.

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@tessie63

Thank you John for the information. I will check out the links you mentioned. One question for you though, with the numbness did you have the odd feelings in your hands like they had grit or little balls to roll around with your fingers. It is so strange and unsettling at times and hard to explain to others. My hands look normal to everyone! Thank you once again for your help.

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I've had some tingling in the tips of my fingers but I think it's more related to carpal tunnel syndrome which I also have but so far it's not too bad.

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@tessie63

Thank you John for the information. I will check out the links you mentioned. One question for you though, with the numbness did you have the odd feelings in your hands like they had grit or little balls to roll around with your fingers. It is so strange and unsettling at times and hard to explain to others. My hands look normal to everyone! Thank you once again for your help.

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Hi Tessie; I have neuropathy in my hands, feet and ankles, relatively recently diagnosed. I started taking trazodone last night to help me sleep, very low dose. I have been very miserable for quite a while with very little sleep. Then when my neuropathy started I didn’t know what to do . This morning both of my feet had the strangest sensation of just dried out, dehydrated, grainy. I saw somebody else comment about their neuropathy feeling like there was sand on their hands and feet and that it didn’t make any sense. That’s the way that I felt this morning and it made absolutely no sense to me.I’m almost 75 years old, I exercised , stretched and did light weights all through Covid ….and my feet have never felt like that -dried out, crackly and gritty…..
I did call my primary care physician and asked if I should take a second night of the low-dose Trazodone for sleep….considering the impact to my feet and they said yes. I joined this because I was hoping I would find someone who has found a way to deal with neuropathy. I’m trying to stay positive…..

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@jmrmackenzie

Hi Tessie; I have neuropathy in my hands, feet and ankles, relatively recently diagnosed. I started taking trazodone last night to help me sleep, very low dose. I have been very miserable for quite a while with very little sleep. Then when my neuropathy started I didn’t know what to do . This morning both of my feet had the strangest sensation of just dried out, dehydrated, grainy. I saw somebody else comment about their neuropathy feeling like there was sand on their hands and feet and that it didn’t make any sense. That’s the way that I felt this morning and it made absolutely no sense to me.I’m almost 75 years old, I exercised , stretched and did light weights all through Covid ….and my feet have never felt like that -dried out, crackly and gritty…..
I did call my primary care physician and asked if I should take a second night of the low-dose Trazodone for sleep….considering the impact to my feet and they said yes. I joined this because I was hoping I would find someone who has found a way to deal with neuropathy. I’m trying to stay positive…..

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Hi @jmrmackenzie, Welcome to Connect. You might find the link I shared earlier to the Foundation for Peripheral Neuropathy helpful - https://www.foundationforpn.org/living-well/. You mentioned being recently diagnosed. Are your symptoms mainly numbness and tingling or do you also have pain in your hands and feet?

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@jmrmackenzie

Hi Tessie; I have neuropathy in my hands, feet and ankles, relatively recently diagnosed. I started taking trazodone last night to help me sleep, very low dose. I have been very miserable for quite a while with very little sleep. Then when my neuropathy started I didn’t know what to do . This morning both of my feet had the strangest sensation of just dried out, dehydrated, grainy. I saw somebody else comment about their neuropathy feeling like there was sand on their hands and feet and that it didn’t make any sense. That’s the way that I felt this morning and it made absolutely no sense to me.I’m almost 75 years old, I exercised , stretched and did light weights all through Covid ….and my feet have never felt like that -dried out, crackly and gritty…..
I did call my primary care physician and asked if I should take a second night of the low-dose Trazodone for sleep….considering the impact to my feet and they said yes. I joined this because I was hoping I would find someone who has found a way to deal with neuropathy. I’m trying to stay positive…..

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Thank you for your reply. I think that’s what I find most disturbing is the feeling of having something on my hands that won’t go away! I don’t even know what to call it. It’s like a coating on my hands. It just feels weird! I have come to the conclusion nothing can really be done for this. It’s a waste of time seeing my neurologist because he does nothing for me but he still gets paid for my visit. I only see him once a year and I think this next time we will part ways. Someone mentioned a CBD balm that works so I’m waiting to hear what it is exactly and if I can get it here. Wishing you all the best and if I find something that works for me I will tell everyone.

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