Increasingly Difficult to Accept Peripheral Neuropathy

Posted by fisbo @fisbo, Oct 10, 2022

I am finding it increasingly difficult to accept peripheral neuropathy it's all very well people coming up with suggestions but carrying them out is quite another. I am no longer who I was and think I am boring and miserable because I am now. Pain takes over and I have become fearful nervous prone to panic attacks which are awful because I start to shake with worrying about the future. I have other worries anyway but if this damned PN would go away it would help.

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@steveny9

Try to find ways to reduce the progression if this is just the beginning.

Mine was caused by statins. If I had know over time this might occur I would have been more proactive in reducing my mg and reviewing the most effective statins that did not cause neuropathy.

Good Luck.........

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SteveSH - got a quick question, in your case, how was it determined that the statins caused your PN?

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@fala

Hi, I thought I would share my one time experience with putting Capsaicin on my feet. Not fair, I should give a little history. I have used this product on my back successfully, so why not? First, I should let it be know, I have had PN for many years. It has progressed enormously over the years. I went from an Outside sales job (with great pay), to an inside Marketing job with much less money, but walking only to and from my car. Foot pain, always the culprit! Over 20 years later, it is still a trial and error process. I am taking CBD daily, which allows me to function. Even though the pain is reduced, it is still ever present. I decided to try Capsaicin on my cold feeling feet. OMG, I had to run & sit on the side of the tub, run the water, get soap and a brush to take that extremely painful cream off ASAP!!! Very Bad experience. Makes no sense to me, just thought I let you know, it's not a solution for feet for everyone.

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Thanks, I had a similar experience when I put it on myself. Hurt like hell. But I am wondering if the treatment works for pain relief after the initial treatment burns the nerve ends and when the pain subsides. I'll take some initial pain for extended relief. So far, I don't buy the sales pitch.

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Misery does like company. I think that was said a million years ago, but it still holds true. I don't like complaining about something that has NEVER happened to anyone else, ever? ...kinda sounds like it's made up? Anyway, I wish we had more research on PN and some more pain solutions. I can get crabby over the weather, let alone this misery!!! Good for you for saying you have the intestinal fortitude to go through an experience with hope for the future. I have hope for you, and I think you will find your way! Good attitude is important. We have this site that REALLY helps us all!!

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@njed

SteveSH - got a quick question, in your case, how was it determined that the statins caused your PN?

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I think I started taking statins when I was 35 (now I am 65). I have Arial Fib and high cholesterol. So I was put on statins to protect the arteries at the heart. When I started statins they were becoming popular.
Because I have AF, every year I would go for a check up to the cardiologist (blood work, stress test, ABI, EKG, CIMT, etc.) He would review my cholesterol and ask me what I was taking and how many mg. Each time the cardiologist would say you doing fine reducing your cholesterol continue what you are doing. Then in 2006, I started to feel numbness in my feet. I went a neurologist and he could not find the issue. I went to a second neurologist and he determined I had small fiber neuropathy. He said there was nothing that could be done. (My first mistake.) I read about it and then just accepted my condition (My second mistake.) The PN was progressing slowly through the years. During Covid 19 it was progressing more and now was taking over the entire foot and right hand finger tips. I was concerned and went to see a neurologist in August 2022 (almost 20 years later). I told him my story. I looked at him and said "Did the statins cause this?" He said, "Yes, it is the silent progressing nobody talks about." I do not have diabetes and I do not have pain. I just have total numbness in my toes, foot, 6 inches above the ankle, and in the right hand finger tips. I was on simvastin 20 mg for the last 10 years (My third mistake). The neurologist told me in 2007 research indicated that simvastin was the least effective statin and caused PN. I can't stop the progression he said but it will take many years before it takes over the hands. Of all the PN (if you have to get it) mine is the one that is painless. (I feels like I am carrying concrete blocks and I can't feel anything in my feet- driving a car is a challenge.) If I had been proactive I would have questioned the amount of MG I was taking and the brand during the years as medical science knew more about statins. In my case, over the years nothing showed up in the test. I looked good on paper. Recently, I found when taking statins you should be adding CO Q 10. (My Fourth Mistake.)
I hope that helps. It was a journey that could have been avoided. The bottom line is statins cause neuropathy some brands less. Start slow.

REPLY
@steveny9

I think I started taking statins when I was 35 (now I am 65). I have Arial Fib and high cholesterol. So I was put on statins to protect the arteries at the heart. When I started statins they were becoming popular.
Because I have AF, every year I would go for a check up to the cardiologist (blood work, stress test, ABI, EKG, CIMT, etc.) He would review my cholesterol and ask me what I was taking and how many mg. Each time the cardiologist would say you doing fine reducing your cholesterol continue what you are doing. Then in 2006, I started to feel numbness in my feet. I went a neurologist and he could not find the issue. I went to a second neurologist and he determined I had small fiber neuropathy. He said there was nothing that could be done. (My first mistake.) I read about it and then just accepted my condition (My second mistake.) The PN was progressing slowly through the years. During Covid 19 it was progressing more and now was taking over the entire foot and right hand finger tips. I was concerned and went to see a neurologist in August 2022 (almost 20 years later). I told him my story. I looked at him and said "Did the statins cause this?" He said, "Yes, it is the silent progressing nobody talks about." I do not have diabetes and I do not have pain. I just have total numbness in my toes, foot, 6 inches above the ankle, and in the right hand finger tips. I was on simvastin 20 mg for the last 10 years (My third mistake). The neurologist told me in 2007 research indicated that simvastin was the least effective statin and caused PN. I can't stop the progression he said but it will take many years before it takes over the hands. Of all the PN (if you have to get it) mine is the one that is painless. (I feels like I am carrying concrete blocks and I can't feel anything in my feet- driving a car is a challenge.) If I had been proactive I would have questioned the amount of MG I was taking and the brand during the years as medical science knew more about statins. In my case, over the years nothing showed up in the test. I looked good on paper. Recently, I found when taking statins you should be adding CO Q 10. (My Fourth Mistake.)
I hope that helps. It was a journey that could have been avoided. The bottom line is statins cause neuropathy some brands less. Start slow.

Jump to this post

I just posted on this site. I am 57 and live in SD. I tried everything, check out my post about stem cell treatment.
This place might be able to help. They start by flushing out the toxins in your body
www bioadvancedmc com

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@kc0myx

I just posted on this site. I am 57 and live in SD. I tried everything, check out my post about stem cell treatment.
This place might be able to help. They start by flushing out the toxins in your body
www bioadvancedmc com

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Stem cell treatment is not a option for me at this time.

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@johnbishop

@fisbo - We have all been there at one time or another but it is not a good place to be. I don't have any magic words or treatments that are going to cure your neuropathy. I'm no longer who I was either. I have difficulty walking and doing many other things that were fun when I was in my 50s and younger. Growing old with PN is the pits to say the least.

What helped me was to not focus on what I couldn't do anymore or the health issues I struggle with on a daily basis. Instead, I try to focus on things I specifically can do. One of those things for me was to examine my surroundings and find something everyday that I enjoy. Sometimes it's watching one of nature's little critters bouncing around looking for food and sometimes it's just helping a friend or neighbor.

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Es verdad que hay que mirar y descubrir nuevos intereses, sin nostalgia por los que perdimos ( algo poco fácil ) .Pero Fisbo nos habla de algo distinto: el dolor.Quienes tenemos la suerte de sufrir una neuropatía sin dolores,tal vez no lo comprendamos.Los comentarios de quienes lo sufren,hablan de dolores muy intensos.Y todos van en busca de mitigar ese padecimiento que creo que es casi permanente.Deseo que en este y todos los casos encuentren eso tan buscado o por lo menos un comienzo de alivio.No perder la esperanza de encontrar esa luz que buscamos.

REPLY
@fala

Hi, I thought I would share my one time experience with putting Capsaicin on my feet. Not fair, I should give a little history. I have used this product on my back successfully, so why not? First, I should let it be know, I have had PN for many years. It has progressed enormously over the years. I went from an Outside sales job (with great pay), to an inside Marketing job with much less money, but walking only to and from my car. Foot pain, always the culprit! Over 20 years later, it is still a trial and error process. I am taking CBD daily, which allows me to function. Even though the pain is reduced, it is still ever present. I decided to try Capsaicin on my cold feeling feet. OMG, I had to run & sit on the side of the tub, run the water, get soap and a brush to take that extremely painful cream off ASAP!!! Very Bad experience. Makes no sense to me, just thought I let you know, it's not a solution for feet for everyone.

Jump to this post

I also had a very bad experience. Kohnmacc

REPLY
@steveny9

I think I started taking statins when I was 35 (now I am 65). I have Arial Fib and high cholesterol. So I was put on statins to protect the arteries at the heart. When I started statins they were becoming popular.
Because I have AF, every year I would go for a check up to the cardiologist (blood work, stress test, ABI, EKG, CIMT, etc.) He would review my cholesterol and ask me what I was taking and how many mg. Each time the cardiologist would say you doing fine reducing your cholesterol continue what you are doing. Then in 2006, I started to feel numbness in my feet. I went a neurologist and he could not find the issue. I went to a second neurologist and he determined I had small fiber neuropathy. He said there was nothing that could be done. (My first mistake.) I read about it and then just accepted my condition (My second mistake.) The PN was progressing slowly through the years. During Covid 19 it was progressing more and now was taking over the entire foot and right hand finger tips. I was concerned and went to see a neurologist in August 2022 (almost 20 years later). I told him my story. I looked at him and said "Did the statins cause this?" He said, "Yes, it is the silent progressing nobody talks about." I do not have diabetes and I do not have pain. I just have total numbness in my toes, foot, 6 inches above the ankle, and in the right hand finger tips. I was on simvastin 20 mg for the last 10 years (My third mistake). The neurologist told me in 2007 research indicated that simvastin was the least effective statin and caused PN. I can't stop the progression he said but it will take many years before it takes over the hands. Of all the PN (if you have to get it) mine is the one that is painless. (I feels like I am carrying concrete blocks and I can't feel anything in my feet- driving a car is a challenge.) If I had been proactive I would have questioned the amount of MG I was taking and the brand during the years as medical science knew more about statins. In my case, over the years nothing showed up in the test. I looked good on paper. Recently, I found when taking statins you should be adding CO Q 10. (My Fourth Mistake.)
I hope that helps. It was a journey that could have been avoided. The bottom line is statins cause neuropathy some brands less. Start slow.

Jump to this post

SteveSH - thanks for the reply and when I started to read your comment, I thought I was reading my own comment! We do have similar circumstances, I've been on Lipitor for about 24 - 26 years and my slight numbness started in 2008 or so. I have moderate to severe numbness, motor deficiency and drop foot with no pain, all bi-lateral. Balance not good. All of this became evident since 2016. Makes me wonder how many of us with PN are now or were on statins and given a diagnosis of idiopathic. A head scratcher for sure!

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@mecha

Es verdad que hay que mirar y descubrir nuevos intereses, sin nostalgia por los que perdimos ( algo poco fácil ) .Pero Fisbo nos habla de algo distinto: el dolor.Quienes tenemos la suerte de sufrir una neuropatía sin dolores,tal vez no lo comprendamos.Los comentarios de quienes lo sufren,hablan de dolores muy intensos.Y todos van en busca de mitigar ese padecimiento que creo que es casi permanente.Deseo que en este y todos los casos encuentren eso tan buscado o por lo menos un comienzo de alivio.No perder la esperanza de encontrar esa luz que buscamos.

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Well said.

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