New Member

[Wings42]

This is my first posting on this board. I'm a 67 yr old man, taking statins for about 2 years. Pain started in rt. buttocks (piriformis) about 1 1/2 yrs ago. I now have moderate to severe atrophy of the muscles of my hips, legs, and especially buttocks. In addition, I have a ruptured disk at L4-L5 that completely occludes the dorsal nerve roots. Pain ranges from 0 (rare) to 7 (a few times a day, especially if I walk, stand, or exercise).

When my orthopedic M.D. mentioned atrophy, I found it hard to believe. Before this, I was a fit and serious walker and hiker, between 15,000 and 30,000 steps a day. How could somebody as active as me have leg and hip atrophy? That was last March. Any attempt to build up or stretch the muscles resulted in extreme and protracted pain. A massage therapist pointed out several things. 1) my hips were uneven, with a pronounced tilt up to the right, and 2) my muscles weren't responding to her therapy as expected, and 3) most of her patients with this pattern were taking statin drugs. I got on the internet, read about SAM and SIA, and immediately stopped the Simvastin (40 mg/day) and crystal niacin, 2 gm/day.

I'm now in PhysicalTherapy. My physical therapist pointed out that with my hip tilting as much as it did, pressure on the L4-L5 disk wasn't even, and was mainly on the right side. As I walked all those miles, the right side of the disk took all the pressure and wear, 1500 times a mile. It finally wore out at that spot, and ruptured.

Healing is noticeable after 6 weeks of PT and taking many supplements (esp 600 units of C-Q10/day and 500 mg of acetyl-l-carnitine with alpha lipoic acid). I actually have some curves in my butt in places that were hollow. I'm not in quite the panic I was a month ago, but am nowhere out of the woods yet.

A question to all is about the extreme pain I'm in. If I take a shower, or cook a meal, or walk 100 feet or so, pain rapidly build to 6 or 7 level, which puts me on the ground moaning. The same if I do my PT exercise routine too vigorously. A line of extremely painful trigger points rapidly generate on the upper ridge of the sacrum, where the gluteus muscles attach. Is this the experience of others here? What do you do for the pain? I have Tremedol, which I only use to get to sleep occasionally because it's extremely constipating. Muscle rubs with Methyl Salicylate (30%), Menthol 10%, Camphor 4% reduce the pain after exercise. That's great but all that aspirin gives me tinnitus if used too often.

I'll appreciate any advice on pain management, rehab, diet, and spiritual/psychological techniques and wisdom in dealing with chronic pain, much reduced life style, and a long recovery with no guarantee of full return of pain free function.

Thanks.

[Nancy W]

Dear Wings42,

Glad you found Spacedoc, but sorry to hear about your ordeal...

The first time I had a statin problem was after taking a month's worth of Lipitor, and with that episode, I had the muscle pain and the elevated CK. It took three months after I quit the Lipitor for the pain to go. That was the first time.

More than ten years later, I let a cardiologist talk me in to taking Red Yeast Rice, because it was a "lower dose." Who knows. The controls on RYR are not there, as it is a supplement. Anyhow, a month into it, I awakened to 10/10 pain down my right leg (neuropathy, not myopathy). I was in fantastic shape at the point up until that point. In the next several weeks, the neuropathy spread to all four extremities, my trunk and my face. Several weeks in, I suddenly found myself fatiguing after ten minutes of deep water aerobics, which I had been doing daily for months, which was why I was in such great shape. Within a couple of weeks, I couldn't maintain an aerobic pace at all.

After some false starts with diagnosing the problem, I found this site and knew I had found an answer. I have been a PT for 40 years, and I rapidly figured out that traditional medicine wasn't going to be of much help. Mostly because they only have drugs to offer, and most of the docs are incredulous that statins could cause these problems. So I found a great naturopath, and began what has been a 14 month journey back from the worst of the pain and fatigue.

I am intolerant of nearly every pain medication, so I had to learn to cope. Worked on listening to relaxation and meditation tapes, one of which had good imagery for pain. Reading here, I figured out about the mevalonate pathway, the downstream problems, and the potential for mitochondrial damage. I read what had worked for others. I brought the information to the naturopath and together we came up with a list of supplements and homeopathic remedies which I began to take. Within about a month of beginning the supplements, my pain had gone down from 10/10 to about 6/10, with periodic spikes higher. Within two months, I was much better, so the naturopath cut the levels of everything in half. Two weeks later, the pain was back with a vengeance. The fatigue had never left. So I went back up on the original doses.

At about five months in, we again cut the doses. That was in January. As would be expected with peripheral nerve damage, the nerves healed slowly from the center of my body out to the periphery. We titrated the doses up and down. At the one year point (August 1), the residual pain was in various toes at various times, and in my left trigeminal nerve above my upper teeth. It would still wake me up at night, sometimes.

The fatigue was still pronounced, if I tried to mow the lawn, or edge the lawn, or use the blower, I was good for maybe 20 minutes and my muscles would simply give out. If I tried to swim, I could do 10 minutes, then complete exhaustion. By the end of a yar, I had visible atrophy, especially in my leg muscles.

So, we doubled the doses of the remaining supplements, particulary one called Neurochondria by Thorne. BINGO! Fourteen months in, I have maybe one brief twinge of nerve pain in my right toes per week, which is over within minutes. No facial pain. And I can swim for 30 minutes, and mow the entire lawn (takes about 45 minutes).

I returned to work at a nursing home two months ago. My strength isn't what it was. I have to be careful when I am working with heavy patients and get help with lifting. At times I find myself praying for strength. At first I would come home completely worn out, but yesterday, I did 8 hours...not bad for a 61 year old therapist (the oldest therapist out of 20 in that facility, I might add). So I am improving.

The other thing I have tried hard to do is eat healthy food...organics, grass fed beef, wild caught fish, clean water (chlorine removed).

Another thing I figured out was I needed to sleep better...I have tried various products with varying levels of success...now on a Thorne GABA supplement...sleeping and having great dreams. If you find some of my other posts, you can see I tried a lot of different things. No one thing, or one dose is right for everyone.

Keep reading here. There is a world of information. The books written by the featured docs, plus Dr. Graveline are good, and give you some ammo to deal with disbelieving docs. Finally I found a doc who is willing to believe. That has been a Godsend, as my primary last year just couldn't get her brain around the fact that statins could disrupt someones life that way. Even after I brought her Dr. Beatrice Golumb's 100 page article on adverse effects. I doubt my old doc even read it.

I have had to learn to be patient with this process. It seems clear that there is still damage, but taking a mitochondrial "cocktail" seems to feed my energy system. I have a feeling I might be on it forever...I take great joy in the progress, and find great joy in pain-free moments, appreciating my health, such as it is...

Good luck to you, and don't hesitate to write with your questions!

Nancy Witt