by Nancy W » Sat Sep 24, 2011 9:34 am
It has been a year since your post, Vicki...thought I would post on this topic to keep the information fresh for people who have neuropathy and are hoping to find information here.
My statin misadventure started two years ago. You can find my story in various places on spacedoc. My reaction to Red Yeast Rice has been peripheral neuropathy, tendonosis, and severe fatigue. Like others have described, the neuropathy went from my groin to my toes, my neck to my fingertips, around my ribcage, and into my face. All the medical tests ruled out other reasons and I was left with statins, which my physician was reluctant to admit. I changed my primary doctor to one who is accepting of alternative medicine, and I got a naturopath.
With the help of the naturopath and this site, I worked my way through trying various supplements, discovering what worked and what didn't. It took months to figure it out, one change at a time. Meanwhile the neuropathy continued. It has, after two years, gotten "better," but the reality is, if I do not take the supplements, the neuropathy comes right back, as bad as ever. When I take the supplements faithfully, not skipping any, I am pain-free 5 out of 7 days most weeks...at least I do not have burning and numb toes. (Different days different toes, so not the usual sort of neuropathy one has with actual peripheral nerve damage.)
With the supplements, plus a healthy, mostly fresh organic veggies and fruits, and organic meats and wild-caught fish, my energy is slowly returning. Not what it was two years ago, but more acceptable.
The tendonosis is difficult to understand. From time to time, with something as simple as rising from a chair, I feel as if some of my tendons are ripping off the bone...weird! I don't think this is actually ripping whole tendons off of bone, but I am betting on micro-tears, because they are painful. I have read about it on this site, so know it happens to others. I work to stay limber. Exercise to tolerance in the water.
Vicki, if you are ever back on here, I hear you when you say you still have neuropathy eight years later. As a physical therapist, most of this statin-induced damage is hard to comprehend in the usual sense. Understanding the damage statins do at a sub-cellular level means that the medical community is not well-informed enough to get what has happened to those of us who come in with statin adverse effects...the mechanism of injury is just not something they have learned about unless they have a specific interest in this topic. Yes, typical peripheral nerve injuries do heal, from the center of the body out towards the fingers and toes...but I, myself, have had issues with the pain going back to the original groin to toes/neck to fingers when I do not get the CoQ10, B Vits, etc...then have it go back to just the distal nerves once I am back on the supplements. In a few days. This does not represent nerve healing. It represents something else on a cellular level.
The other discussion on this topic has been around pain meds...for me, nothing has touched the pain, save for eating right and getting the supplements I need. This also leads me to wonder about the mechanism of the damage.
One thing that I heard about from a colleague had to do with statins remaining in the body for years...well, I can't verify the information she got in the course she took. My colleague is a doctor and a chiropractor and was at a continuing ed course when the doctor presenting talked about statins remaining in the body for 10 years after stopping. The doc was Dr. Brownstein. I wrote to him, but he never wrote back. But i wonder about this. Recently one of my colleagues, a naturopath that I teach craniosacral therapy with, was doing craniosacral therapy on me, working on my brain. She said, " I am sensing toxicity, deep in your brain. It is the statins." So she has me trying some dietary things to increase circulation to my brain. We will see what happens. As ever, time will tell.
The bottom line is that if you are reading this, and you have neuropathy, it is possible to control your symptoms with careful titrating of supplements to discover what you need, and how much of it is helpful. Don't give up! It will take time. A lot of time. But what is the alternative? I have come to realize there is no alternative...learn, learn, learn, then do all you can to be healthy in every way you can!