Serious medical problems

[mags]

I was on Zocor for 3 and 1/2 weeks and developed shooting pains down my legs and pin prick feelings all over my body as well as extreme fatigue. Went to 4 dr's who all diagnosed me with something different before I put 2 and 2 together and found this website and went off the med. Told dr who said it was a coincidence and that those are not side effects of Zocor. I told him about this web site and he completely dismissed me and told me to go right back on it. I was back to about 90% normal when the pains came backand I developed temportal neuritis, a urinary tract infection, rib pain(?). All other blood tests have been normal. Now going to a new dr who said none of these could be related to the Zocor. Prior to this had been taking coq10 150 mg, l carnitine, alpha lipoic acid, a standard process vitamin, and occasionally magnesium at night for sleeping.. Sometimes I feel the pains after taking some of these supplements. And have now developed muscle twitching in my legs. I feel as though I am allergic to everything and am even afraid to eat. Can anyone give me direction as I was completely healthy before this and only went to the dr because I needed to establish with a pcp. Or does anyone have any thoughts? Could the magnesium be a problem? It is in all pills.I am sure not going to get an answer from the dr's!

[catspajamas]

Like most of us here we have run into physicians who don't know a hill of beans about statins...I too, was on zocor...severe abd pains, diarrhea, vomiting, then muscle pain, weakness in legs and arms...shooting pains. numbness in my feet, ankles...you name it, I had it...It took a dermatolobist, after I developed shingles , to suggest I go off all my meds. let my immune system settle down, that when I started adding my meds back again I found it was the zocor...tried 3 other statins all with the same horrible results...since then I have found a cardiologist that said statins would cause those problems and my new, fresh out of med school, pcp...said they are beginning to find that some people can't take statins...so slow but sure we may be getting our info out...My advice to you? trust your own instinct...you know your body better than anyone...No one should be on statins until the dr gives you diet, exercise, and natural supplement advice first...And no ones cholesteral, in my opinion, should be under 200...I am not a dr. just someone thats going to have to live with nerve-damaged-painful feet the rest of my life...all because of zocor...I called the drug company and their rep admitted that 1 in 10,000 people had severe adverse reactions including nerve damage from zocor...I r eally believe I would of died if I had stayed on zocor..I was that sick.....good luck

[Darrell]

"developed shooting pains down my legs and pin prick feelings all over my body as well as extreme fatigue"
Been there, done that -- on Zocor.

"dr who said it was a coincidence and that those are not side effects of Zocor"
Maybe he needs to read the Patient Prescribing Information sheet and this site instead of winging it.

"he completely dismissed me and told me to go right back on it"
I'd say he tried to kill you.

"rib pain(?)"
Lower ribs? Mine is more a mild ache and it comes and goes. I thought it was from being overweight (in part due to leg muscle problems during a 16-month sedentary pre-carnitine period), but I've dropped 45 lbs to my ideal weight and it still comes and goes. I think mine is actually a muscle ache right outside the lower ribs.

"All other blood tests have been normal."
Mine were too. Including CK/CPK even though my leg muscles hurt all the time.

"Now going to a new dr who said none of these could be related to the Zocor."
Another dr who doesn't know/remember the published side effects.

"Prior to this had been taking coq10 150 mg, l carnitine, alpha lipoic acid, a standard process vitamin, and occasionally magnesium at night for sleeping."
I've tried all of those and then some. I'm only using the Q10 and carnitine now. The Q10 because I believe I may have always have been low and the carnitine because it prevents my leg aches for about four hours per dose.

"Sometimes I feel the pains after taking some of these supplements."
You haven't mentioned exercise intolerance. When I'm very active, I can develop pains and weakness about four hours after taking carnitine. The only things that help me are more carnitine or extended rest.

"And have now developed muscle twitching in my legs."
I had that in my last month on Zocor and a few months after stopping Zocor. It felt like a vibrating cell phone, but it wasn't.

"I feel as though I am allergic to everything and am even afraid to eat."
If carnitine has been helpful for you, consider eating small amounts of carbohydrates frequently. If your leg muscle cell mitochondria are not processing fats and wastes properly, you can reduce the problem by fueling the muscles on sugars and carbohydrates instead of in-cell fat stores. Carbohydrates last longer and thus delay the mitochondria fuel-switching to fats. I basically eat five times a day now with dinner being the only normal-sized meal. I think I experience less weakness this way. But I have to count calories to avoid weight gain.

"Could the magnesium be a problem?"
I tried magnesium supplementation for about a month with no change. It has helped some people though. I'm not sure about the effects of getting too much. Try Google.

When I had problems sleeping due to leg muscle ache (right leg only), wearing a thigh-high compression stocking helped somewhat. I suspect that just changing the sensation to something else was part of the effect, if not all of it. But it did help. 20 mm Hg compression. Another thing that helped was being sedentary for a couple of hours before bedtime. That allowed some of the ache to resolve before I was trying to get to sleep.

I'm not sure the urinary tract infection is related. I had one years ago, but I'm not sure whether I had started on Zocor then or not. I've never had another one. You know, it is possible to have non-statin-related medical problems in addition to the statin ones.

PS -- Months after Zocor pretty-near did me in, my PCP talked me into trying Zetia. That was a near-immediate failure. All my problems flared up again. At this point I don't care what my cholesterol is or whether it is important or not: I'm never going to tinker with it again.

[cjbrooksjc]

Mags: The one thing unmentioned in this thread so far is that the healing process is a long one with occasional set-backs. I am a Zocor casualty and still, after one year off the pill and on supplements, have bouts of aching, exhastion, twitching, blah, blah, blah, but is getting better. I found exercise (moderate) and steam/sauna to be helpful as well. I'm still on heavy amounts of COQ10 and L-Carnitine + a boatload of other crap, but I took this poison for about 4 yrs, and that may make a BIG difference in recovery time and total recovery prognosis. One of our group took statins for 17 years (I still shudder at the thought). In summary, it is important to give your regimen time (and I mean a few months) to begin to work. It is also important to keep your spirits up. Your body has been damaged by the very people in whom you placed your trust and confidence to keep you well; that fact alone is often enough to cause chronic mistrust and a lag in one's outlook.
COQ10 and Acetyl L-Carnitine, or plain L-Carnitine in the 2 to 3 grams a day (each) neighborhood (taken in several doses) is not an uncommon intake for self-medication, but, if you are taking BP meds, be sure to watch your BP - Q10 can cause your BP to drop a bit. And Carnitine is a stool softener for many; so, you should be aware of that and drop the dosage by 500Mg if you have that problem, and continue to drop by 500Mg until you can accommodate it. Take the COQ10 on a full stomach, and the Carnitine BEFORE meals.

That's it from me Mags. I wish you health!

Best,

Brooks

[Brian C.]

Hi Mags! I'm the one Brooks referred to who was on statins 17 years (7 years Zocor, 10 Lipitor 80mg). I now realise how lucky I was not to be permanently crippled, suffering "only" from (mainly) upper arm myalgia, chronic fatigue, no stamina, no "Mister Midnight", aches and pains that came and went etc.
I have now been off for 7 months and only recently feel I have made a breakthrough to normal health (i.e. only the 20 year-old angina to cope with)

Every day I eat eggs fried in palm oil for breakfast and enjoy butter on my bread. My 3 times a day cocktail consists off approx 2 grams each of Magnesium Ascorbate, L-Carnitine and D-Ribose dissolved in water. Also 200mg each of Coenzyme Q-10 and R-alpha lipoic acid. I am also taking Krill Oil and astaxanthin capsules. Other things too. Costs a fortune but is proving a terrific investment, I no longer weep when confronted by a physically demanding task - like washing up a pile of crocks and pans!

It takes time but armed with knowledge and patience we overcome.

Brian.

[cjbrooksjc]

Brian C. Boy, do I connect with your remark about weeping over a physical demand. Months ago my Son-in-law invited me to a baseball game; at the time I said yes I felt pretty good. But by the time of the game I felt so bad (and he so excited about going and taking me) that I wished for all the world that I'd have some debilitating accident that would prevent me. We had to park about a mile away and walk to the stadium; I thought I would actually expire, but - I made it thru the game, sweat like a race horse, had two beers, and came home feeling somewhat better. It isn't just that this poison cripples your body - it takes away your life. Thanks for reminding me. It felt good to be REALLY pi**ed off again!

Regards,

Brooks

[Brian C.]

Oh yes Brooks, us men don't like to admit to crying but one gets so close to it so many times when confronted with, what are to us, daunting tasks that are nothing to the undamaged. It's embarassing because nobody except (hopefully) our nearest and dearest can have the faintest inkling of what its like.

A severely circumscribed life-style where one is constantly auditing one's energy reserves, aware that undertaking one task will preclude undertaking others.

Since I have been feeling so much better lately I had forgotten the private hell I have been living the past many years.

Knowledge empowers!
But only if it is acted upon

Brian.

[Dee]

Hi Brian and CJ,

Your discussion brought to mind this article. Thought you might be able to relate to this, I know I can.

"The Spoon Theory
My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.




As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?

I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn't seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupusâ€

[carbuffmom]

Wow, Dee! It's exactly how my life is. Thanks for giving us this article. Hang in there! Deb

[Brian C.]

Thank you Deb. A most eloquent analogy.
It tells it EXACTLY as it is for us.

Thankfully the last couple of weeks my supply of spoons seem to be increasing.

Brian.

[cjbrooksjc]

Dee. It's a simple and easily understood analogy - very touching, and right on the mark. Thanks for sharing the article. I've a friend with Lupus and should count my blessings more often and more carefully. I at least have a HOPE of permanent recovery.

Brooks

[Darrell]

Yes, thanks. That's a good description of my life. Six carnitines a day and I can use them any way I want, but when they're gone, I'm done.

[Dee]

I just knew that you would all be able to fully understand the "spoon theory".

Everyday I have to make trade offs, choose carefully, and plan as far ahead as possible, in order to have any life at all. Just like many here do.

My favorite saying is now, "I cried because I had no shoes, until I met a man who had no feet." It reminds me that no matter how bad it is, there are others worse off than me.

On the other hand, my biggest challenge each day is to control the anger towards all the manufacturers of the statin poison, and the lack of accountability for what they have done.

The day of reckoning will come, and I hope that individuals, in addition to being held financially liable, will also be charged as criminals.

They should have to spend an appropriate amount of time in a small cell. That is what they have done to us, imprisoned us in an increasingly shrinking world.