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?

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@tessie63

I know how you feel. I was active at 70 also and then along came cancer and chemo and now I’m 75 and unable to walk or stand without my walker. Life can be cruel sometimes but we carry on don’t we. Wishing you all the best.

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I agree.

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@mitfit

Right. And learn how to live around it. I have been dealing with this for over 20 years. At first the physician told me to elevate my leg. Geez! I have opted not to take neurontin. With me it is familial as my father had it and so do two of my brothers. Sometimes the feet make it so hard to sleep!

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My father and one of my sisters had it.

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@njed

@mitfit - My circumstances are about the same and I see @lecowing also says the same. The way yours has progressed is the same as mine. One foot, then the next, then numbness moves upward. In 2018, I was told that I have "a little in the hands" but that has not been too much of an issue other than picking up small things. I am fortunate not to have pain but that constant tight sock feeling, numbness with poor balance is an on going problem and you are unfortunately right, not much to stop it. As I've been told by some docs, try to treat the symptoms if you can, but don't chase down the cure.

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I keep repeating your advice Ed, to focus on what we CAN do, not can’t do. If honestly picks me up when I’m having a down thought.

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@dbeshears1 - Great!! When I left Mayo in MN in 2020, got outside and my wife and I just looked at each other and said now what? You go with an expectation.....they'll figure this out. After all, they are the best. After lots of tests, I was told that with my axonal polyneuropathy, there is no cause and no cure. So, on the trip back home, I got thinking about the options on how to deal with this. To be honest, my wife said to me to focus on what you can do and not on what you can't. That I guess was a turning point for me. Since Feb 2020, I've tried not to step beyond my limitations and figure out how to do what we want within my abilities. And, be prepared to make adjustments along the way but always keep in mind what you can do then go do it. Ed

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@njed

@dbeshears1 - Great!! When I left Mayo in MN in 2020, got outside and my wife and I just looked at each other and said now what? You go with an expectation.....they'll figure this out. After all, they are the best. After lots of tests, I was told that with my axonal polyneuropathy, there is no cause and no cure. So, on the trip back home, I got thinking about the options on how to deal with this. To be honest, my wife said to me to focus on what you can do and not on what you can't. That I guess was a turning point for me. Since Feb 2020, I've tried not to step beyond my limitations and figure out how to do what we want within my abilities. And, be prepared to make adjustments along the way but always keep in mind what you can do then go do it. Ed

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Thanks for sharing your positive attitude! Pat

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Hi! My experience is similar to yours. I, too, became concerned as I realized that the neuropathy was ‘climbing’ up my body starting from my feet. I began chemo for pancreatic cancer in Nov, 2018, and started to notice the neuropathy in the winter of 2019. I had 12 rounds. For me, I feel like my knees have proven to be the first area where the neuropathy in my legs has stalled. As for my hands, the neuropathy has grown in intensity ever so slowly. I have arthritis in my fingers and that actually now causes more distress.
I take duloxetine for the neuropathy and also find that my feet like most any kind of gentle attention! Soaking in warm water and epson salts, any kind of massaging, etc. I also take vit B12 and have recently switched to injections which a nurse friend helps me with. I stayed away from socks because they simply added another layer of ‘discomfort’. Then my 2 yr old grandson started an art class and everyone takes their shoes off and walks around in socks. So…I now take my sneakers/shoes off and put on socks and then take the socks off and put shoes on when leaving. Practice in this case does make better…
Stay the course!! Our bodies are amazing!! Linda Ucko Leiby

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Hi, I have Poly nephropathy from diabetes type 2. Unfortunately there was a chemical in Vietnam that many of us were caught in the over-spray! Since I came home in 1967 there has been an abundance of studies carried out.
As of February, 2023 there are now eighteen (18) "Presumptive" diseases attached to this chemical (Agent Orange)
To date-this year-I have now been diagnosed with six (6) of those presumptives...
I am not going to bore you with 200,000 characters', only to say that the onset of diabetes came first followed very-within months-quickly. The nephropathy started in my feet and remained in that area for a number of years.
But then it began creeping up my legs-1st left & then Rt-up to my knee caps but no further in the last 3 years.
Thirty-four (34) months ago the disease began creeping into my hands and then up & up until it is now just North of my elbows-thus, the label "Poly"!
As of my last physical, they still do not have any medications that I am not allergic to in some manner. At this juncture all I do is to grit my teeth and take solace in the fact that at 77 it won't be too many more years...
Now that I have gone around the elbow to find the thumb! From talking to other Vets with the same diagnosis, I honestly do not think it will all the way North (I certainly hope not) About your arm's I just do not have any good or bad information. Probably because we were drenched in the Dioxin and there are so many unknown's about AO-they are still finding maladies, 40, 50 years later & they will continue to rear(sp) their ugly selves!
You might give a neurologist a visit and listen to what they think about the drug 'amitriptyline(sp). It does carry a strong caveat! That being, you cannot take any pill form type of medication for 'Thrush aka Yeast infection...
I think I have over stayed my visit here!
Thank you,
Rick

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@juviijazz

Hi, I have Poly nephropathy from diabetes type 2. Unfortunately there was a chemical in Vietnam that many of us were caught in the over-spray! Since I came home in 1967 there has been an abundance of studies carried out.
As of February, 2023 there are now eighteen (18) "Presumptive" diseases attached to this chemical (Agent Orange)
To date-this year-I have now been diagnosed with six (6) of those presumptives...
I am not going to bore you with 200,000 characters', only to say that the onset of diabetes came first followed very-within months-quickly. The nephropathy started in my feet and remained in that area for a number of years.
But then it began creeping up my legs-1st left & then Rt-up to my knee caps but no further in the last 3 years.
Thirty-four (34) months ago the disease began creeping into my hands and then up & up until it is now just North of my elbows-thus, the label "Poly"!
As of my last physical, they still do not have any medications that I am not allergic to in some manner. At this juncture all I do is to grit my teeth and take solace in the fact that at 77 it won't be too many more years...
Now that I have gone around the elbow to find the thumb! From talking to other Vets with the same diagnosis, I honestly do not think it will all the way North (I certainly hope not) About your arm's I just do not have any good or bad information. Probably because we were drenched in the Dioxin and there are so many unknown's about AO-they are still finding maladies, 40, 50 years later & they will continue to rear(sp) their ugly selves!
You might give a neurologist a visit and listen to what they think about the drug 'amitriptyline(sp). It does carry a strong caveat! That being, you cannot take any pill form type of medication for 'Thrush aka Yeast infection...
I think I have over stayed my visit here!
Thank you,
Rick

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Hi Rick. I am a Canadian and so I would guess you were serving your country when this happened and you were in the Viet Nam war. You are an American hero for sure. That war should have never happened and I am so sorry you are suffering so much pain from it. Neuropathy is definitely not for the weak and it sounds like you are gritting your way through this. I wish I could help you with the pain you are feeling. I heard of a product called Mineral Ice which you just rub on and it has a soothing relief for a while at least. I have not tried this but I am going to order some today on Amazon. You shouldn’t be allergic to this I would hope. I wish you all the best and I hope I have helped you even just a little bit. Hugs

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@tessie63

Hi Rick. I am a Canadian and so I would guess you were serving your country when this happened and you were in the Viet Nam war. You are an American hero for sure. That war should have never happened and I am so sorry you are suffering so much pain from it. Neuropathy is definitely not for the weak and it sounds like you are gritting your way through this. I wish I could help you with the pain you are feeling. I heard of a product called Mineral Ice which you just rub on and it has a soothing relief for a while at least. I have not tried this but I am going to order some today on Amazon. You shouldn’t be allergic to this I would hope. I wish you all the best and I hope I have helped you even just a little bit. Hugs

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I have tried a roll on of Lidocaine 4% ...no menthol . I put it on my feet in the morning and at night.
It seems like my neuropathy has benefitted from this med.
My Neurologist recommended it..I think it works well. Also, you can get it as a cream also. It's OTC and not to expensive.
Hope this helps, Pat

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