exercise intolerance

[cls]

Hello,

I have been taking 10 mg of zocor for about 6 years. Three years ago, I started having pain in my right elbow and forearm. Since my job was repetitve, my gp diagnosed tennis elbow, and prescribed pt and a cortisone shot. Pt did not help, so I accepted a shot 2 months later. Pain got better, and lasted for 8 months, when pain returned. I also quit my job and didn't work, thereafter. Also, I developed neck and shoulder pain, tingling in the right hand, sleep problems I thought were as a result of the pain. I seemed to be forgetting things and was loosing concentration, had constant fatigue. As a result of the elbow and shoulder pain, had weakness when lifting even a cup of coffee, dropped things because of reduced grip strength.

I had 2 more rounds of pt, which did not help. The last one was to try to relieve tightness in the neck, possibly irritating nerves down the arm. As a result of the pt, after lifting 1 lb. weights, I developed severe soreness in my biceps muscles of both arms. The soreness never got better, it lasted for 4 months. I was taking muscle relaxers, anti-inflammatories, darvocet, and then also anti-depressants, as this pain and weakness has been going on for almost 3 years. As a result of this, I felt and acted like a 75 year old woman, I am only 52!!!!!!!!!!!

Three weeks ago, I had to ask for an excuse from jury duty, as I was a walking zombie due to all the meds and fatigue. I asked if the zocor I was taking could be the reason my biceps soreness had lasted 4 months. After listening to the tv ads for lipitor and other statins, I started investigating on the web. I had no idea that there were so many varied side effects. With permission from my doc I went off the zocor on March 19. Within 2 days the screaming pain in my biceps started to subside. My sleep problems are better and my memory and brain functions seem to be better also. I am to have a CPK and aldolase tests, tsh, lipid panel, and a complete metabolic panel.

I believe since my symptoms are improving, they were caused by the zocor. I am to see my doc on April 25 for my 4 month diabetes check, where I will ask for alternatives to statin drugs. I have a family history of high cholesterol, both parents, and type 2 diabetes.

I think most patients are convinced these side effects are attributed to aging, in senior patients maybe, but not in mid 40's and early 50's. This is an outrage. I am going to report my experience on the statin study at The UCSD survey website.

I would appreciate any stories any of you have on exercise intolerance, thanks.

Connie

[poohhel]

Connie- I had typed out a longggg message to you regarding my exercise intolerance but I do not know what happened, seems to have logged out. Anyway, now I am too sore to type as much more, so here is the bottomline:

* I was on Vytorin 16 months, started at age 42...
* At month 1 had shoulder surgery and couldn't do PT after only 10 visits...no strength in right arm and a muscle tremor developed
* At month 2 Next forearms, biceps, and shoulders of both arms burn after any form of use even holding a book open, writing or typing
* At month 4 my walking 4.o mph 6 x a week for 30 mins on my treadmill stopped because of burning in calves, next my gazelle workout was stopped as well . . .
* 16 months in and I can barely function in normal everyday activities like brushing my hair and putting on makeup... walking is painful because my feet burn constantly
* I have developed perpherial neuropathy which consist of a constant numbness in both arms, hands, legs, feet, buttocks along with burning/cramping after any use, and itching all over at rest ...
* I have been off Vytorin since March 26th...and have yet to feel any form of recovery
* I have had EKG, Cat Scan, and MRI... the latest was EMG, NVC test, and xrays of my c-spine and l-spine. I keep hearing time will tell. . .

[carbuffmom]

I, too, suffer from exercise intolerance. I used to run 4-5 miles most days and did boot camp and Curves. Now I can barely walk 2 miles. I work out very slowly at Curves just to keep things moving, but I have to take a day off to recuperate. I have a hard time fixing my hair, my arms and shoulders are weak. My hands have tremors, so makeup is now a challenge. I can sympathize with you both.

poohhel: How did you feel after your EMG/NVC? I developed twitching all over from my test. It lasted for months. I still have some fasciculations, though not so bad as before. I did run a few hours before my test (I thought they were just going to test my hands). Maybe that caused it. I was also still taking vytorin at the time. My neuro suggested it was from anxiety or coincidence---that I may have ALS! Dr. Golomb said not to have it done again cuz I'd probably have the same results. Sometimes I just want to scream.

Thank goodness for our friends here. My best to you all. DEB

[cls]

DEB, I too, had many tests. I had 3 mri's on the elbow that did show some tennis elbow, the last mri had contrast. The third orthopedic surgeon I saw that ordered the last mri said my symptoms were so varied and not all of them are related to the tennis elbow, and that if he operated to debride the damage tendon tissue, all my symptoms would not be relieved.

I believe that the tendon damage did not heal just as the tissues soreness from exercise does not regenerate itself while you take statins. I had numerous e-rays on most joints and neck and all they show is mild arthritis, not enough, I believe, to cause my amount of pain.

I had an EMG and nerve conduction tests that showed no damage, but yet I had the tingling and weakness. After the one test with the probe that causes the shocks, my upper arm was all black and blue.

Since I have diabetes type 2, I see a podiatrist yearly to keep a check of my feet. He tested for neuropothy and said that I have some in the little toes of my both feet. My blood gluscose is under control, according to my gp, so I didn't know why I had the loss of some feeling, maybe the zocor. I can't really tell yet if there is any improvement. I am due to see the podiatrist within a few months, then I will see.

My gp also checks my urine once a year and he said that I had protein in the test a few years back, so guess what. Another pill for that. He prescribed enapril malaete, some people also take it for high blood pressure, which I don't have. Maybe the stuff in the urine was related to leaky muscles, the stuff that is chewed up by the statins and ends up blocking the kidneys, causing the failure and then death.

Just wonderful. Drugs and more drugs.

DEB and poohhel, would you mind if I asked your ages. If you would rather not, I understand. I am 52 and I used to feel that I walked like a 75 year old. No way I could ever walk 2 miles a day, I couldn't even stand for an hour without burning pain in legs and feet.

Connie

[poohhel]

Deb- I didn't have any lasting problems after EMG or NVC although just as Connie said it didn't show any problems either...so here we go for more test.

Connie- I am 44, just turned 44 March 29th... Like you I can't walk more than 5 minutes on my treadmill without burning in legs and feet... even standing for more than an hour starts my feet burning.

So far, the only half baked decision is a pinched nerve, but I agree with you both... NO WAY for this much pain and intolerable tortures... omg. Thursday I see my neurologist again to see where we go from here, Right now I just want him to give me something that will not knock me out but will allow me to enjoy my cruise to Europe in May. .. I'll deal with the rest when I get back...

[carbuffmom]

Hi Guys:

I am 49 years old. Have been on statins since I was 35. Have been off for over a year. Trust me, walking 2 miles is a challenge. Sometimes I can't do it. Fatique gets me. I don't have pain in my feet though. Hang in there. DEB

[bibbz]

Hi everyone,
Its a while since my last visit, but I`ve just been reading all your posts. I`m a 56 yr old female and have been on simvastatin for about 10 years, like you all the symptoms crept up slowly and I thought it was an age thing. Let me begin by telling you a little about myself.....at age 30 I was diagnosed with angina and a cholesterol reading of 13.5 which is 3 times higher than normal, was put on drugs to lower it but it only came down to 11, in 1995 aged 45 I had triple bypass surgery and soon after put on statins. even though I have a heart condition I have never let it stop me from being very active digging the garden diy etc. About 2 years after starting statins I developed a rash on my chest leading to terrible pain in neck and shoulders then onto muscle soreness and weakness extreme tiredness low moods which I thought was because of all my ailments, to finally dreadful pain in my lower back This started about 3 months ago and was occasional. over the past 2 weeks it has been permanent. I had been to my docs on several occasions asking for the dose of 40mg to be reduced, and it fell on deaf ears. To-day i saw a different doc in the practice and she was quite condescending but when I asked for a referral to a cardio doc she decided to try me on something else, she has put me on NICOTINIC ACID !st week 350mg 2nd week 500mg and 3rd week 750mg I have to go back in 2 weeks to see how i am doing on them. Although I am relieved to be off statins I have read the list of side effects for the NA and i am worried that these could be worse :? I do sympathise with you all...but please go and see your doc and ask for an alternative. You only get one shot at this life dont let meds spoil yours
My very best wishes to you all

[cjbrooksjc]

bibbz: I didn't read anywhere in your note that you are taking the supplements - CoQ10, L-Carnitine, etc. Are you?

Regards,

Brooks

[bibbz]

Hi Brooks, I was taking 300mg coq10 but my blood pressure dropped to my boots so I reduced the dose to 200mg and still the same, I have, now, this week stopped them because the nicotinic acid also can cause blood pressure to drop.......I also take 2000mg of Vit C 400iu Vit E and epa fish oils. Nicotinic acid is Vitimin B3 but in very large doses so i will have to check out what supplements I can take with it. My Doc has given me no info at all. Hope it doesnt turn out to be worse than the statins.

Thanks for your reply

Bibbz :wink:

[cjbrooksjc]

bibbz: First, I will tell you B3, or Niacin, can cause severe reactions in some people; I am one, and I will not take it. You should 'Google' Niacin and read the adverse reactions info to see if any apply to you. Niacin is also a natural cholesterol med, (look at the posts under Advicor for more Statin-related info) and B3 extenuates the life of Statiins in the body.

Secondly, your body can't function without CoQ10, which the statins deplete, and, without CoQ10, your body may not produce all the L-Carnitine it needs for proper cell function; especially if you eat low amounts of red meat, which is high in natural L-Carnitine.

Finally, I don't know what to tell you, but I would have your Dr. address these issues before giving B3 supplements priority over CoQ10. It's true that If you take BP meds, CoQ10 will cause your BP to drop even more; so, that is another consideration; that is, what do you stop taking, Bp meds or CoQ10?

It may seem I'm not giving you direct answers; true, but I am no physician and am simply trying to give you the information necessary (based on personal experience) to make your own informed decisions (following discussions with your Dr.) on how to proceed.

Regards,

Brooks

[bibbz]

Hi Brooks,
Thanks so much for the info. i have read the side effects for the niacin and i must admit I am scared to death of it. I am so afraid to "disobey" my doc in case they wont be helpful in the future. I would rather not take any meds for the cholesterol, because I dont believe cholesterol is the issue. I have read so much on the subject, but when I tried to explain all this to my doc she told me I was talking nonsense. So the only way i can con them is to somehow find something that will control my cholesterol at around 7 and let them think i am taking their poisons. I was told in 95 because i was so young when I had bypass surgery that I would need a 2nd op within 10 to 15 years and although my heart condition has not deteriorated yet, I will need them on side if it does. They would blame my deterioration on the fact that my cholesterol level was so high, because of my refusal to take meds. Things are so different here in the uk especially if your like me and have to depend on the NHS. So i am looking for a miracle, something natural to bring down my cholesterol,(even though that isnt the concern) and control the inflammation.
i didnt know what to do with my BP meds if I continued on coq10, but I have a bp monitor and I was going to experiment with stopping the BP meds. But I have got to start the Niacin on Monday so now I`m totally confused. if you have any ideas Brooks or suggestions i will be so grateful

Thankyou so much

Bibbz

[cjbrooksjc]

bibbz: I can't advise you directly, but, if it were I... dropping the BP meds and closely monitoring my BP while taking CoQ10 starting at the highest dose you had taken previously; what was it 600Mg. If your BP stays down, stop the meds; if it goes higher, increase the CoQ10 and monitor again. Many sufferers on this site have QUIT BP meds entirely and use CoQ10 to manage their BP.

As for the Niacin, below is an excerpt from one of Doc Graveline's posts on the subject:

**** Niacin is available in several different supplement forms: niacinamide, nicotinic acid, and inositol hexaniacinate. The form of niacin that is best tolerated with the least symptoms is inositol hexaniacinate. Niacin is available as a tablet or capsule in both regular and timed-release forms. The timed-release tablets and capsules may have fewer side effects than the regular niacin; however, the timed-release are more likely to cause liver damage and are therefore not recommended for long-term treatment. Regardless of the form of niacin being used, periodic checking of liver function tests is recommended when high-dose ( 2 – 6 gm per day ) of niacin is used. A starting dose of 25 mg regular niacin is reasonable with 25 mg increases every few days to tolerance or effect.****

As for other Cholesterol reducing supplements, the findings are not clear. Plant Stanols and Sterols are the primary replacement therapy. Below is a cut & paste write-up on these esters to help you decide what to do.

**** Stanol Esters: Plant sterols and stanols are substances that occur naturally in small amounts in many grains, vegetables, fruits, legumes, nuts, and seeds. Since they have powerful cholesterol-lowering properties, manufacturers have started adding them to foods. You can now get stanols or sterols in margarine spreads, orange juice, cereals, and even granola bars.

On a molecular level, sterols and stanols look a lot like cholesterol. So when they travel through your digestive tract, they get in the way. They can prevent some of the real cholesterol from being absorbed into your bloodstream which just goes out with the waste.

Experts have been studying the effects of food fortified with plant sterols for decades. One important study from 1995 of people with high cholesterol found that less than an ounce of stanol-fortified margarine a day could lower "bad" LDL cholesterol by 14%. The results were published in The New England Journal of Medicine. ****


Now, here is an Advert for an American Plant Esters (Sterols/Stanols) product called Cholest-Off so you will know what to look for when and if you decide this is a reasonable alternative for you. Understand, I am in no way underwriting this product. This is only an example of what's out there and what you can expect the label to read.

Note 1. Sorry, the cholesterol numbers shown below are US version and may not help you.

******************************************

Cholest-Off contains Reducolâ„¢, a unique, proprietary blend of natural plant sterols and stanols. Plant sterols and stanols, also known as phytosterols and stanols, are naturally occurring substances present in leaves, nuts, vegetables and other plants. Over 40 years of clinical research on plant sterols and stanols have demonstrated their long-term safety with no known adverse effects.

Products containing at least 0.4 grams per serving of plant sterols and stanols, eaten twice a day with meals for a daily intake of at least 0.8 grams as part of a diet low in saturated fat and cholesterol, helps support cardiovascular health. One serving of Nature Made Cholest-Off supplies 0.9 grams of plant sterols and stanols.†

As part of a cholesterol management program, you should consult your physician and have your cholesterol levels checked regularly.
Many factors such as diet, body weight, physical exercise and age can affect your cholesterol levels. However, diet and exercise alone don't always reduce your cholesterol levels to the desired range. That's where Nature Made® Cholest-Off can help.

Total Cholesterol: (see my note 1. above)
Desirable.......Less than 200 mg/dL
Borderline......200 to 239 mg/dL
High..............240 mg/dL or greater

Cholest-Off with Reducol™, is clinically proven to reduce LDL ("bad") cholesterol and total cholesterol by blocking cholesterol absorption. As a result, taken as directed, Cholest-Off will lower your cholesterol levels and help support your cardiovascular health.†

Cholest-Off starts to work within 30 days! †These statements have not been evaluated by the Food and Drug Administration. This product is not intended to diagnose, treat, cure or prevent any disease.

******************************************

I hope this is helpful. In summary, please know I am not a medical professional, I am a retired IT project manager who has been severly affected by Statin useage. Perhaps others on the forum with a more clinical perspective can add more? xrn, Biologist, sos-group-owner, nursejudy, anyone? Stay positive, bibbz. In any frame of reference you care to use - This process takes time.

Regards,

Brooks

[Biologist]

Brooks (& bibbz):

Your post sure made sense to me -- good information. But here's a point that I want to make which may tend to make our advise a little (or maybe a lot?) less meaningful in bibbz's case, it seems to me:

I think bibbz may actually have "hypercholesterolemia" properly known as "Familial Hypercholesterolemia."

Otherwise, I believe the term is only half a word, and is useless and deceptive, but helpful to BigPharma.

The "one word version" is a contrived "disease." Or condition or syndrome or whatever.

What's "hyper" about normal cholesterol levels?!

Less than 300 or 400? Normal in my book! -- but hey, everyone's free to name their own "cutoff point" of what's outside the realm of normal. I think this commonly heard abbreviation of the compound word should be avoided on this forum. It is part of the propaganda campaign in my book.

Very few of the population -- including the population of this website -- have any pathological cholesterol level. Well, that's my take on it anyway!

This irritating little technicality -- together with other concepts such as privacy concerns with the potential stigma of admitting to a mysterious serious sounding disease (i.e., hypercholesterolemia) is likely part of the reason for the low turnout on the petition. (The recommending and encouraging of Annonomous Signing from the beginning would have helped a bit in this regard -- but the petition is still helpful and low turnout was to be expected.)

Hypercholesterolemia -- Gees! Whatever happened to good 'ole timey more innocent and quaint-sounding diseases like, say, Syphilis or Hoof & Mouth Disease? You know, something a little more understandable and "socially acceptable"?

Regardless, Let's help stamp out "Contrived Disease Syndrome"!

Doing so leaves room for the real ones such as Amyotrophic Lateral Sclerosis (Lou Gehrig's Disease) or more epidemic ones such as Signaturphobic Petitionitis (John Hancock's Disease).

For what they're worth, here's what Wikipedia has to say about the two -- one real, one contrived (in my book):

*http://en.wikipedia.org/wiki/Familial_hypercholesterolemia

*http://en.wikipedia.org/wiki/Hypercholesterolemia

Biologist

[Biologist]

Hi, bibbz.

Most people on this forum should never have been prescribed any cholesterol lowering medication in the first place. There was no remote justification for it in my opinion. For example, with slightly elevated cholesterol levels I was put on 40 mgs of Zocor for six years until I had serious problems (and quit it on my own). I now know that was outrageous.

Your case is different. It is not as simple. If I have figured it correctly, your pre-statin cholesterol level was 526. While it is my understanding that some people with high levels like yours do OK and live normal lives without medication, you apparently have had heart problems. Of course, we have to just take it for granted that you actually had heart problems and that you really needed the bypass surgery. You see, it is not out of the question that once it was known that you had such high cholesterol levels, you were railroaded (intentionally or not) into an angina diagnosis to be followed by the surgery. Here's a book I read in the last few months that opened my eyes to this other major medical scam:

*http://www.amazon.com/Heart-Frauds-Uncovering-Biggest-History/dp/0941599566/ref=pd_bbs_sr_1/102-5514054-0279363?ie=UTF8&s=books&qid=1177307595&sr=8-1

These surgeries are fairly frequently done when they are not needed -- particularly when there appears to be some justification such as high cholesterol and chest discomfort. Here's a quick example of how this "justification process" can work: I would be willing to bet the decision to place Brooks on Zocor was largely due to the fact that he had an additional risk factor (aside from his normal cholesterol levels which were arbitrarily decreed unhealthy) that was happily factored into the decision: He smoked at the time. Presto!! Easy decision!: Place this man on medication! (BTW, Brooks, same here -- but I quit over two years ago and my Zocor was not adjusted down, let alone eliminated!)

Do you have any reason to believe that the bypass was not necessary?

It makes a bit of a difference. If I believed that it was unnecessary, then I would be more inclined to not worry about a higher than normal cholesterol level -- particularly for a woman, and particularly for a woman your age. I do not know how to possibly determine what was found in the arteries that were bypassed (if they even really checked them out), but if they were clean and the operation was done "just to be on the safe side," we would sure like to know.

But assuming that you have the tendency for such heart problems, maybe it does indeed make sense to try to lower your levels -- but I cannot even say that with any degree of certainty. I just don't know. And unfortunately I don't trust the experts who have proven themselves so inept so often. So your situation is a dilemma.

Unfortunately, Niacin has not been something that I have researched at all. I do not know how it works or what all the more serious the side effects are. Hopefully you will not have the type of reaction that Brooks has had with B3. His ideas on taking the CoQ10 and systematically lowering the BP medication sounded like good advice, but I do not even know enough to say whether taking CoQ10 it is even necessary with Niacin treatments. It may not effect CoQ10 levels at all? But I do know that since you are currently experiencing problems from the statin that taking CoQ10 for at least some months is a good idea regardless of getting off of Zocor and trying the Niacin treatment.

I sure wish you well and will pass on anything that I may learn that could be applicable to your situation and I hope you keep us posted on what you decide and how you fare.

Biologist

[Biologist]

One other thing. If others in your family tree -- particularly parents, aunts and uncles -- have had higher than normal cholesterol levels, how they have fared is instructive.

Biologist

[Brian C.]

My father died of a heart attack at 49 and I ran into angina problems in my early 40s. I had cholesterol lumps (xanthomas) on the tendons of my hands and I was diagnosed as having heterozygotic familial hypocholesterolaemia, which I do not dispute.
I still have a blocked coronary artery, angioplasty having failed, after 17 years on statins.
I no longer take a statin (I was on 80mg Lipitor) because what I have discovered through this site and other sources is that it's not the QUANTITY of low density lipids (so-called "bad" cholesterol) in the bloodstream that causes coronary heart disease but the QUALITY, i.e. oxidation, makes it dangerous. Also other factors, particularly plasma homocysteine, play a major role.
I believe it was a long period of sustained stress that triggered my problem and that FH made me acutely vulnerable, i.e. plaque build-up occurred at a faster rate than it would if I had had normal lipid levels.
Armed with my new understanding and with the help (monitoring) of a sympathetic endocrinologist I take supplements as recommended here and elsewhere, avoid stress like the plague (I had to retire at 51) and take niacin with the objective of keeping my cholesterol level just "high normal" to avoid return of xanthomas. I also try to exercise but the ME-like symptoms I currently have (thanks to stain-induced damage) are rather limiting to say the least.

I hope my experience is of reassurance to you bibbz

Brian.

[Biologist]

Hi, Brian.

Your comments seem consistent with my knowledge on the subject.

Thanks.

Biologist

[Brian C.]

I'm hoping to pass a "Layperson's Guide to the Science" to xrn soon for possible inclusion on his new site.
There, I've gone public so I will have to pull my finger out now

Brian.

[bibbz]

Hi Brooks and Biologist,
Wow thankyou both so much for your time and caring. I do believe the by pass was necessary, as I was working in the care industry and the angina pain I suffered became intolerable so much so that each patient I visited I had to use 3 tablets under the tongue to cope with an hour of exertion and if i had 5 patients a day then that was 15 glycerol trinitrate just to get through my working day to prevent crippling angina pain, then in the march of that year exhaustion set it and I could no longer work. After the by pass I felt absolutely wonderful but I was told that I would still have moderate angina as 2 other arteries were beginning to block but not enough to be treated at that time.
As for familial hypercholesterolaemia thats exactly what they diagnosed along with ischemic heart decease. My poor mom died at aged 41 in 1959 with a sudden heart condition, I dont know what the actual condition was but I believe it was arterial sclerosis. All of my moms siblings died young with heart related conditions except two who lived into there 70,s but eventually the heart caused their demise.
My cardio surgeon after the bypass told me she wanted my cholesterol level below 5 (175us) and said that it didnt matter what I ate as my liver over produces regardless.
Now to the present day I stopped the zocor on thursday night back ache eased by Saturday had a really good active day felt better than i had for ages sunday the same.....but to-day my bloodpressure dropped to 112/59 and I have felt totally wiped out. haven't taken the coq10 since last thursday because of the looming change of meds. So I am wondering if the zocor has been responsible for keeping my blood pressure high, I was put on Lisinopril (ace inhibitor) because my blood pressure went up 12 months after I started the zocor. So instead of starting the Nicotinic acid to-day I have decided to leave it for a few days. I have booked blood test for cholesterol liver and muscle for Friday as my doc didnt even suggest it. and to-morrow I am not going to take the blood pressure meds and i will monitor my bp several times throughout the day.
There is no way I am going to start nicotinic acid if my blood pressure is low as it could go even lower.
I am going to study the advice you have both been so kind to offer me and I feel so relieved that at last someone understands how complicated my situation is, but apart from the side effects of the statins I am the most active, positive minded and dare I say healthy one out of my group of friends who are all in their 50`s and they dont have a medical condition. so I hope with the help of good people like you I can sort out what I am going to do about these meds.
I am so grateful to you both and would be very interested in hearing of your situations with your health and what alternatives you have taken for your condition. So Sorry my posts are so long hope you good people out there haven`t fallen asleep.

Very Kind regards

Bibbz

[bibbz]

Hi Brian
Your experiences sound very similar to mine, may I ask how high was your cholesterol? and what strength of niacin are you taking? and what side effects if any do you experience.? do you take pharma grade or over the counter brands and how much has it lowered your cholesterol? ooops sorry Brian for all the questions but I am so hungry for information. My sister has also very high cholesterol at age 50 she was also 13.5 which is about 500us she was put on atorvastatin 80mg and ended up so ill when I told her what I had discovered about the drug she came off it and her levels went right back up to 13.5 and she panicked but her doc was understanding did some blood tests and said her muscle test showed signs of problems so now she is only on 10mg and feeling ok. But.....she is 62 with NO signs of heart disease. I get more confused every day.

Take good Care Brian

Bibbz