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Increasingly Difficult to Accept Peripheral Neuropathy

Neuropathy | Last Active: Aug 27, 2023 | Replies (163)

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@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.

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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!