Is there any connection with statin use and neuropathy?

Posted by sjpphil @sjpphil, Apr 27, 2016

Is there any connection with statin use and neuropathy? I have had numbness and tingling in my hands and fingers, along with severe cramping at night. One NP thought this was carpel tunnel, but my doc does not think so. Any thoughts?

@gman007

This is not in reply to any specific question or individual, but I am wondering if anyone's doctor who prescribed statins recommended that you also take a supplement called CoQ10? My PCP suggested that to me when he handed me the prescription and I have not experienced the pain in my fingers and feet that I had when I was previously on a statin drug. My wife also uses it and she could not tolerate the pain that came with a statin prior to this supplement. Has anyone who is on a statin and experiencing pain tried this? It is one more cost added to your pharmacy bill, but if the statin keeps my blood flowing more smoothly and I avoid a major heart episode in my life, then it is worth what I pay for it.

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@ealanddtc

I've never had a doctor laugh at me or flat out refused to order a test. My doctors have respected me done all they could to help me. I'm sorry if that hasn't been your experience.

I've never brought up the question of dietary solutions, but I'm going to put it on my Evernote list, and see what they have to say.

Jim

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Hi Jim (@jimhd) and @ealanddtc,

I have idiopathic small fiber peripheral neuropathy with only numbness without the normal pain. I think my Mayo neurologist told me about 30% fall in this category. He also told me there were no drugs that can remove or address the numbness. All of the drugs prescribed do one thing, block the pain signals in the brain, sometimes requiring higher and higher doses as time goes by (IMHO). I was pretty depressed when I found out there were no topical creams, medications or drugs to get rid of the numbness. I started doing my own research which I highly recommend for anyone – not that it is a magic pill but the more informed you are the better you can help yourself whether that is communicating with your doctors or finding alternative solutions that offer some relief.

The first thing I found was Dr. Terry Wahls story of how she found a solution to greatly improve her symptoms from multiple sclerosis – from being bound to a wheel chair to riding a bike in a year — https://terrywahls.com/about/about-terry-wahls/. I ordered her book and did her basic diet for about six months and it helped me lose some weight but didn't do much for my neuropathy. What it did do for me was give me hope for something that would help through cellular nutrition. She has some excellent YouTube videos and Ted Talks that you can find with a simple search on the Internet.

The second thing I did was start looking for a local support group for PN. I ended finding the Minnesota Neuropathy Association which was good but what was even better was finding Mayo Connect and sharing and learning with other members. At the same time I also found the closed Facebook group Solutions to Peripheral Neuropathy Pain & Discomfort (http://solutions2pnpd.com/) . I read through all their documentation and research, including group members success stories and thought this must be too good to be true. So I started researching and reading about the part each vitamin/supplement plays in nerve health. I can't speak for anyone else, all I can do is share what the protocol has done for me. I started taking the supplements in Sept. 2016. When I started the numbness from my PN was just below both knees. By Dec 2016 the numbness was just above the ankles. I'm still taking the supplements but have not made any further improvements. There are some days where I don't notice the numbness but I'm good with it. The supplements may never make it completely go away but it is definitely not progressing like my Mayo neurologist told me it would until it eventually affected the autonomic nerves. My biggest worry was losing the ability to drive. I still don't like to drive long distances but a lot of that has to do with my other ailments and old age.

Before I started taking the supplements I gave the list to my primary care doc who ran it by a Mayo pharmacist. The only thing he commented on was he thought the Omega 3 and Omega 6 supplement levels were too high. I completely understand why there is doubt, there are a lot of people out there with many different products trying to make money off of people with neuropathy (there are a lot of us!). You have to be your own advocate and do your own research not taking anyone's word for it (mine included). My advice/suggestion — discuss it with your doctor and do your own research to make an informed decision. Here are a few sites that can help you make a determination and how to avoid a scam:

Mayo Clinic Connect’s discussion on avoiding scams:
https://connect.mayoclinic.org/discussion/how-to-avoid-quacks-and-snake-oil-treatments/

FDA's HEALTH FRAUD PAGE:
https://www.fda.gov/forconsumers/consumerupdates/ucm278980.htm

NIH's National Center for Complementary and Integrative Health (NCCIH) which offers guidance about integrative health and how to evaluate it.
https://nccih.nih.gov/health/decisions

John

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Same problem here. I have tried three different kinds of statins and had severe joint pain, muscle spasms and now on Livalo I have had neuropathy in my fingers at night. Thought it was from arthritis at first. But got suspicious and stopped the Livalo and within days the neuropathy has gone as well as the extreme joint pain. I do have arthritis but it has never been as bad as it was on the statins. Statins make my arthritis much worse and the muscle spasms kept me up at night. The neuropathy was the last straw for me. Very scary. I never had symptoms like this before the statins. I am now off them, and I am back to normal. I was put on statins because my LDL was creeping up and was only slightly high. I won't take another statin again.

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@gman007

This is not in reply to any specific question or individual, but I am wondering if anyone's doctor who prescribed statins recommended that you also take a supplement called CoQ10? My PCP suggested that to me when he handed me the prescription and I have not experienced the pain in my fingers and feet that I had when I was previously on a statin drug. My wife also uses it and she could not tolerate the pain that came with a statin prior to this supplement. Has anyone who is on a statin and experiencing pain tried this? It is one more cost added to your pharmacy bill, but if the statin keeps my blood flowing more smoothly and I avoid a major heart episode in my life, then it is worth what I pay for it.

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I agree with you. I tried three different kinds of statins and each one was worse than the other. Muscel spasms, joint pain, and with Livalo I also ended up with neuropathy. I will not take another statin.

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@trpain

Same problem here. I have tried three different kinds of statins and had severe joint pain, muscle spasms and now on Livalo I have had neuropathy in my fingers at night. Thought it was from arthritis at first. But got suspicious and stopped the Livalo and within days the neuropathy has gone as well as the extreme joint pain. I do have arthritis but it has never been as bad as it was on the statins. Statins make my arthritis much worse and the muscle spasms kept me up at night. The neuropathy was the last straw for me. Very scary. I never had symptoms like this before the statins. I am now off them, and I am back to normal. I was put on statins because my LDL was creeping up and was only slightly high. I won't take another statin again.

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@trpain — welcome to Connect. Thank you for sharing your symptoms and treatments. Lots of information available on statin induced neuropathy and you are right, it is very scary. I'm glad you are back to normal. I had the same conversation with my doctor and told her I would use diet and exercise to bring the numbers back under control.

John

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@gman007

This is not in reply to any specific question or individual, but I am wondering if anyone's doctor who prescribed statins recommended that you also take a supplement called CoQ10? My PCP suggested that to me when he handed me the prescription and I have not experienced the pain in my fingers and feet that I had when I was previously on a statin drug. My wife also uses it and she could not tolerate the pain that came with a statin prior to this supplement. Has anyone who is on a statin and experiencing pain tried this? It is one more cost added to your pharmacy bill, but if the statin keeps my blood flowing more smoothly and I avoid a major heart episode in my life, then it is worth what I pay for it.

Jump to this post

I have peripheral neuropathy in both feet, R foot is the worst and It's getting worse, especially when driving and at night. I have researched this, since the cause is unknown. I had taken statin drugs for over 20 twenty years and it seems there have been many studies done that show a relationship between statins and neuropathy. Can't get any answers from doctors and I'm staying off of most meds that have awful side effects like Gabapentin. All the doctors I've seen just brush it off and only try to give me meds for pain which I won't take because of side effects. About 5 years ago I was diagnosed with diabetes 2, just out of the blue. Nobody in my family ever had it & I had no symptoms. I read that statins can cause diabetes. I went off the statins and some months later doctor said I no longer have diabetes. Now, my cholesterol is fine, no diabetes but have peripheral neuropathy and a rare blood disorder. Now I am trying to find out if the blood disease is related to the neuropathy. The pain & numbness is getting worse. I'm feeling that one day I won't be able to drive, but even worse, walking might be difficult. I have read that statins are overprescribed, about 15 million Americans take them and new guidelines propose 13 million more patients may be prescribed statins as a preventative measure. This makes me wonder………………….

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@gman007

This is not in reply to any specific question or individual, but I am wondering if anyone's doctor who prescribed statins recommended that you also take a supplement called CoQ10? My PCP suggested that to me when he handed me the prescription and I have not experienced the pain in my fingers and feet that I had when I was previously on a statin drug. My wife also uses it and she could not tolerate the pain that came with a statin prior to this supplement. Has anyone who is on a statin and experiencing pain tried this? It is one more cost added to your pharmacy bill, but if the statin keeps my blood flowing more smoothly and I avoid a major heart episode in my life, then it is worth what I pay for it.

Jump to this post

Had my GP overprescibe a statin that had my cholesterol well under control attempting to lower my triglycerides and a year later was in the same boat as you. Got off the statin but too late , have neuropathy in both feet that seems to be a life time issue. Have found nothing that works to ease the pain, good luck finding any help from the medical community. They just tell you it's permanent.

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@trpain

Same problem here. I have tried three different kinds of statins and had severe joint pain, muscle spasms and now on Livalo I have had neuropathy in my fingers at night. Thought it was from arthritis at first. But got suspicious and stopped the Livalo and within days the neuropathy has gone as well as the extreme joint pain. I do have arthritis but it has never been as bad as it was on the statins. Statins make my arthritis much worse and the muscle spasms kept me up at night. The neuropathy was the last straw for me. Very scary. I never had symptoms like this before the statins. I am now off them, and I am back to normal. I was put on statins because my LDL was creeping up and was only slightly high. I won't take another statin again.

Jump to this post

I had a stroke 4 months ago and after they started statins I had this pain in my feet and now right hand. Is this going to get worse I try to find something for relief.

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@trpain

Same problem here. I have tried three different kinds of statins and had severe joint pain, muscle spasms and now on Livalo I have had neuropathy in my fingers at night. Thought it was from arthritis at first. But got suspicious and stopped the Livalo and within days the neuropathy has gone as well as the extreme joint pain. I do have arthritis but it has never been as bad as it was on the statins. Statins make my arthritis much worse and the muscle spasms kept me up at night. The neuropathy was the last straw for me. Very scary. I never had symptoms like this before the statins. I am now off them, and I am back to normal. I was put on statins because my LDL was creeping up and was only slightly high. I won't take another statin again.

Jump to this post

Hello @garydoys — welcome to Connect. I read in your early posts that you had a stroke and the doctors started you on statins. Have you talked with your doctors about the side effects you are feeling in your feet and your right hand?'

John

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I am an Ulnar Neuropathy patient with brain atrophy & CSVD. Last week I went out for an official outing for just 20 kms through a scooter and after return my whole body was painful as if some 10 persons attacked me. I couldn't lift my body nor wake up. Is it progressive? Can't we cure neurological problem? Severe Headache continues.

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Hello @venki, I'm sorry to hear you are suffering from severe headaches. Have you discussed the headaches with your doctor? With my neuropathy I know that I have to be careful not to over do it when I'm exercising or just out having fun doing activities. Exercise is important but it's just as important not to over do it. I was not familiar with Cerebral Small Vessel Disease (CSVD) but did some searching and found an informative article that may better explain what's going on.

Cerebral Small Vessel Disease: What to Know & What to Do
https://betterhealthwhileaging.net/cerebral-small-vessel-disease/

Mayo Clinic has some good information on CSVD here:
https://www.mayoclinic.org/diseases-conditions/small-vessel-disease/diagnosis-treatment/drc-20352123

John

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I have mention it but no real help yet I have a apt with primary phy. on the 20th of March

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