Is there any connection with statin use and neuropathy?

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.

@gman007- My GP did not mention this, but through my research I came to a better understanding of how as we age the natural form og CoQ10 is depleted and much more so with the use of statin drugs. I highly recommend using it and there are many forms out there, especially on the price point. I purchase most of my suppements through a USA based facility called Stop Aging Now. I take Max-Q10 Ultra PQQ which contains 200 mg of CoQ10 as ubiquinone, 200 mg of L-carnitine, 100 mg of Omega-3 complex, 50 mg of Trans-resveratrol , 10 mg of Pymoloquinoline, 5 mg of black pepper. Sounds like a lot of stuff, but has really made a difference with my PN. I also take Tumeric.

I appreciate your not wanting a heart attack, but as I look back now at my need for statins, there are times I almost wish I would have died than to have to live with the constant pain of neuropathy that I believe that statins caused me. My doctor told me " don't expect this to go away."

Chipper, I am sorry you have to deal with this. Hopefully at some point you will feel a little better. About a year after stopping statins, I could walk without a lot of pain. I take a low dose of lyrica which helps too.

With so many millions of people who suffer from this painful neuropathy, you would think that some doctor would find something that works. We have been to around 18 doctors and all that is offered is pain medication. With lots and lots of research, you will find that the pain medication only works for a while and even the largest dosage soon does not stop the pain. I have found some statements on the internet that the pain medication, while helping some with the pain, will many time make the condition worse. I really believe that when something is found to stop this pain and really help this condition, it will be something to do with nutrition. Doctors are not trained in the field of nutrition and know absolutely nothing about eating right and taking vitamins. Our doctors will not even talk with us about nutrition. I spend 20 to 40 hours per week doing research. I can understand your pain because I watch the one I love hurt so badly all the time. I am determined to research and keep trying things to "rule out" until I find something that will help. I feel alone most of the time because the doctors will not help me. When I ask for a test to be ordered, many times they laugh at me and just refuse. If I do find anything that works or helps, I will be sure to post and hope all of you post anything that helps you. Wishing you the best, Chipper.

"The protocol works" is a group of vitamins and supplements that are getting very positive results reducing pain by regenerating nerves, for a lot of people, according to their internet comments. I am currently taking these with some improvement. Check it out, they have a very active internet group. Items can be ordered at http://www.solutions2pnpd.com/products

@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

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

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.

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.