Relief for my leg muscle pain!

[Ray Holder]

I had refrained from adding more to Darrell's notes, because I was thinking that the post polio case is a bit different, as we have less muscle depending on glucose for energy, and so are more dependant on fat consuming ones. I assumed that this would not be the case with damage solely from statins, but reading of the problems people have with hand and finger muscles, which are not endurance muscles, I wonder if something else besides carnitine shortage is causing this, perhaps the shortage of Q10 also causes muscle deterioration by the muscle's inability to produce energy without it, it only goes to show what a lot of research is needed to find out the root causes of all our troubles, and who is going to fund that??

[Tia]

I have now been off Vytorin for two months, I had a few weeks that were great and then 3 weeks bad and a week great and then the last two weeks bad again. I am taking 2000mg of Carnitine and 1600mg of Q-10 (now in the mornings), I am still hurting everyday, I can walk for a short time, sit for a short time and stand for a short time. It is all in my legs, thighs, calfs, heel of foot and upper arms......my concern, can it be something else or is it going to take a lot longer to heal? I was on Vytorin for close to two years, anyone know how long this will take to heal the damage and any suggestions of other tests I might need to get? So tired of hurting.

[Darrell]

Tia, the fact that you have had some weeks that were great is certainly encouraging. I've had quite a few of them since I started L-Carnitine. This isn't one of them. I started taking all of my L-Carnitine in the morning and that worked well for a while, but recently the effect wears off by mid-afternoon and I have to take more then. I'm a bit concerned that it seems to work some times and not others and doesn't seem to relate to activity level. Maybe I just need to take more than the 2,000 mg I have been taking. Anyway, I haven't found the "right" dose and schedule yet except that taking 500 mg every four hours worked fine for many weeks. I may just return to that.

I feel like there are more variables here than I know. Before L-Carnitine I used to have my "Bad Leg Days". A Bad Leg Day was a day that started out painful even after a night of rest. A "good day" gave me an hour or two before the aches set in. I figured that maybe some nights I just moved around too much in my sleep. Since starting L-Carnitine two months ago, I've only woken up to two Bad Leg Days. That's a lot less than before. The troubling thing is that the L-Carnitine is not fully effective on those days. I want to try other supplements, but that's a slow process when most days are pretty good anyway. I've upped my B vitamins to see if that helps, but so far my guess is not, or at least not in an obvious way. Anyway, my point is that you and I need to do a lot of experimenting that unfortunately does not go quickly and is clouded by other variables.

Is it possible that we are consuming something that gets into our blood and slows down the removal of waste products from the muscle cells? I need to look more into how lactic acid and other muscle wastes are removed.

As for how long it will take to heal the damage, I'm not optimistic after a year and a half of living damaged. I'm not expecting a healing, I'm just looking for the best way to cope with the damage. I hesitate to say it, but I will: I think statin toxicity has thrown some of us into a degenerative state, some of us into a damaged but stable state, and some of us into a state from which there is recovery. I think I'm in the middle group.

Sorry, I'm a little down today. The last week or so has been the worst since I started L-Carnitine. It's like your "great" weeks -- I know the possibility exists and that adds to the frustration when things are not so great.

[Ray Holder]

Darrell, I will try again, I had a posting all complete, went on preview and it all disappeared, I had lost my internet connexion!!!
I have been trying to improve my results from Q10 and carnitine, as like you , sometimes everything is not as it was.
A few weeks ago I tried a new form of Q10 for almost all my dose, but after about 10 days I had nasty bouts of angina, and took as much of the original stuff as fast as I could and over about 3days it cleared up. But, also I had done a lot more than usual in the days previous to the attack, and my carnitine level was probably low as well.
Now I have very little working stomach muscle and from polio my diaphragm is very weak and I use my stomach muscles to breathe and they can't cope with that and keeping me upright at the same time for many moments. That gives me a barometer to check my carnitine level, if my back won't go upright, time to take a rest. I go out very little, but go for an old folks' lunch and chat at the church on Tuesdays, and usually spend Wednesdays getting over the effort!!!
I am moving towards taking Q10 in 200mg doses 3 times a day, at breakfast, lunch and tea, I had been taking 300 at breakfast, 200 lunch, and 100 teatime, but I have had the angina at night or late evening and thought it might be running low later on. I am reducing the morning carnitine dose to about 4gms and adding 2gms mid afternoon for the same reason. I have seen several references to having Q10 in distributed doses, so perhaps some goes to waste if too much in one go.
As regards carnitine loss at night, read on. when I first had angina before statins, I feel that my Q10 had fallen due to age,(71) and my carnitine supply was overloaded by the extra demands put upon it by the Post polio syndrome, these two factors caused the angina, as the heart can use both glucose and fat for its energy source, I figured that when sugar levels drop in the night the carnitine and fat take over, carnitine already low, and dropping the carnitine level even more.
Perhaps that is what happens to you, I find it takes some time to get up to working energy level in the morning, but then I have a few more annos domini behind me.
I am afraid I am not too fluent this late in the evening, but I hope you get the gist of the argument, one can only keep on experimenting andhopin g to find more answers.
PS There is a big announcement todayabout beta blockers for blood pressure causing problems. They also reduce Q10 supply!!!!

[Tia]

Here is me thinking out loud again! When I was body building I read, you need to eat 6 times a day instead of eating once a day (to lose weight). The theory is that if you eat 6 times your metabolism speeds up (which I did and I lost weight). But if you eat once you will gain because your body feels that it has been starved so it will grab all the food and hold it and use it, and what it doesn't use will turn to fat. So with that being said, if we gain our pills all at once in the morning, the body will grab what it needs and and what is left (putting it bluntly) piss it out! I think maybe doing it through out the day will keep our body in check. I did all in the morning this week and it was bad, today I split and I feel much better....have a good pain free weekend, that is my ten pennies....

[sos_group_owner]

Excellent point Tia. I think this is especially important for CoQ10. My
husband takes 500 mg daily, split doses... 200 mg in the AM & 300 mg PM.
CoQ10 is fat soluble (gelcaps best form) and is best taken with dietary fat or
vitamin E.

Water soluble vitamins only stay in our body for about 4 hours, so for
(example) high doses of vitamin C, by taking the 1,000mg capsules
throughout the day keeps a steady level and also helps avoid intestinal
upset. Other water soluble vitamins are Choline, Inositol, Vitamin H (biotin)
and the B's.

Fran

[carbuffmom]

Have you ever heard of Jonathan Campbell, health consultant? He has published "Natural Strategies for Recovery from Statin Drugs". His website is ww.cqs.com. I have been somewhat following his program for about 3 months along with Dr. Graveline's suggested regime.
Anyway, I haven't gotten worse, but Mr. Campbell suggests taking the vitamins and supplements three times a day. Perhaps, as suggested, we need only so much at one time and the rest gets flushed out. Campbell also suggests the removal of all dairybecause they are pro-inflamatory which interferes with tissue rebuilding. He also suggests no artificial sweeteners, not even chewing gum. Avoid tylenol, use aspirin. Avoid MSG, including all food at fast food places. For a while I had become lax in my recovery program and started not feeling so well. Thus, I am back at it again. It may be worth the read for you. Maybe the addition of another supplement at different times of the day is better. My best to you all. Perhaps we will soon have some concrete answers.

[Tia]

I had ordered Dr. Campbells book last week. I will try what he suggests. I have a question, if I go for a Creataine Kinase CPT test, will the fact that I have been taking Carnitine change the results, are does one not have to do with the other? And has any one had a muscle biopsy done? Hope everyone is having a pain free day!

[Ray Holder]

Tia
The carnitine will probably have lowered your CK within hours of taking it, as long as you are taking enough to make up your underproduction due to the statin. In hospital last year, my CK was 500, and within 3 hours of starting my carnitine again, the test gave a figure of 200, very quick acting!!!
Ray

[Tia]

Hi Ray thank you for the reply. So does that mean if I take it and get my tests done, my Dr. is going to think everything is ok! I want him to see if there is any damage done, so should I do the test in the morning before I take the carnitine? And how did you know yours dropped, did they do two tests that day?

[Ray Holder]

Tia
It will probably take a few days before your CK goes right back up again, I had been about a week in hospital without my carnitine when they took a CK test, result 500, and after I asked the consultant to let me take my Q10 and carnitine, they set a day to start another statin and let me start the others the same day, which I did at about 6.30 am. The blood test was taken round about 10 am, and was 200.
I didn't take the statin for long, it brought old problems back. My CK level was about 500 when all my statin problems were at their height 3 years before, until I discovered Q10 and carnitine, I wouldn't think it would vary much if I was not changing my medication or supplementation.

[tex62]

My husband had his CK checked every six months while taking statins. It was never outside of norms, although it went from the low side of normal to the high side of normal. This led our doctor to believe that the muscle problems, etc were not related to statins, but they were. Somewhere I read an advisory (possibly Univ. Calif. Statin Study) warning that statin damage, sometimes irreversible, can occur in the presence of normal CK levels. This test should definitely be done, but it could come back within norms, even if you had statin related side effects. Best wishes in your recovery.

[Darrell]

You all need to read "Statin-associated myopathy with normal creatine kinase levels." [Annals of Internal Medicine. 2002 Oct 1;137(7):581-5.]

From the PubMed abstract:
"CONCLUSION: Some patients who develop muscle symptoms while receiving statin therapy have demonstrable weakness and histopathologic findings of myopathy despite normal serum creatine kinase levels."


[url]http://www.annals.org/cgi/reprint/137/7/581.pdf[/url]

That was published over two years before my doctor of internal medicine came to the wrong conclusion ("no harm done") from my normal CK levels three weeks after my stopping Zocor. He gave the CK level more credence than my muscle pain and weakness, and he didn't even know the limitations of the test and results. That, or he was just trying to duck an imagined potential lawsuit for disabling me.

[Ray Holder]

Darrell
Unfortunately, the url does not appear to exist any longer. The UK guidelines said that one should take action above 3 times normal, and I wonder if they hide beind that, mine was almost twice normal at 500 and I certainly lost a lot of muscle. However a Dr in Adelaide, Australia was collecting information on polio survivors with normal CK levels, but damage visible by microscopical examination, I have not heard if he has completed his studies

[Darrell]

The URL still works here. Here is the whole abstract:

BACKGROUND: Muscle symptoms in patients who are treated with statins and have normal creatine kinase levels are not well understood.
OBJECTIVE: To report biopsy-confirmed myopathy and normal creatine kinase levels associated with statin use.
DESIGN: Case reports from preliminary analysis of an ongoing clinical trial.
SETTING: Clinical research center in a community hospital.
PATIENTS: Four patients with muscle symptoms that developed during statin therapy and reversed during placebo use.
MEASUREMENTS: 1) Patients' ability to identify blinded statin therapy and 2) standard measures of functional capacity and muscle strength.
RESULTS: All four patients repeatedly distinguished blinded statin therapy from placebo. Strength testing confirmed weakness during statin therapy that reversed during placebo use. Muscle biopsies showed evidence of mitochondrial dysfunction, including abnormally increased lipid stores, fibers that did not stain for cytochrome oxidase activity, and ragged red fibers. These findings reversed in the three patients who had repeated biopsy when they were not receiving statins. Creatine kinase levels were normal in all four patients despite the presence of significant myopathy.
CONCLUSION: Some patients who develop muscle symptoms while receiving statin therapy have demonstrable weakness and histopathologic findings of myopathy despite normal serum creatine kinase levels.

[KWag]

My husband, 40, has had bilateral leg pain for almost 2 years now. It started close to the time he first began taking Lipitor-has since switched to Zocor. He describes it as a burning pain/ache. He has taken numerous medications for RLS and neuropathy but nothing helps. He takes Ambien 5mg at night to sleep. His CPK is normal; folate, B12 and methylmalonic acid normal; homocysteine slightly elevated at 13.1. Since his B12 was on the low side of normal, he took a 1ml injection but hasn't noticed any difference in the pain. He has been to 4 neurologists and no one can give him answers.
I have read all the posts and no one seems to get 100% relief from the CoQ10 or carnitine, but some of you feel 80% better, which is encouraging enough to have him try it. Did you all feel better immediately or did it take a long time?
I am very hopeful. Thank you all for putting your information out there.
K

[Art J]

Glad I found this forum. I was diagnosed with post polio syndrome about 25 years ago, and have been slowly deteriorating (I don't rest ernough!) I can still walk on level ground byt stairs and hills are a killer. I have no stamina even for day to day household stuff. My MD put me on crestor due to a marginaly high cholestrol. Leg pain increased very noticeably, so the crestor was stopped, CK tested; just over the hi-normal range. Stopped for 3 weeks, pain reduced, started again with co Q10 and half a crestor. Pain returned with a vengance. Stopped both, pain and fatigue still a big issueafter 2 weeks. When (if!) the pain/fatigue return to normal levels, I am to get the CK tested again. I think that I am going to be very cautious about startin Crestor again as there is no cardiac history in my family. I will research the carnitine, it may be worth while.

Thanks all

Art

[Ray Holder]

Art J
Post polios should most definitely NOT take statins, as I know to my cost.

You can find my paper explaining the reasons on www.spacedoc.net/post_polio_statins.html and click on the link to my paper. Further information on the need for carnitine can be found on the W Australia Polio Network website [www.upnaway.com.au/poliowa] and click on carnitine.

Polios have an extra need for carnitine due to the preponderence of muscles needing carnitine to produce energy after recovery from the disease, and as Q10 decreases during the lifetime it reduces the manufacture of carnitine, so that when statins further reduce Q10, troubles are piled on troubles.

Also, Q10 and carnitine are both vital in heart action, and reduction of both means that heart muscle weakness starts to appear, with consequent angina and rise in blood pressure, which is where I came in at age 71 and came close to heart failure before Tessa Jupp of poliowa gave me the clues to avert that situation. So much for a drug that is supposed to protect your heart!!

If you have any worries about heart attack problems, I am taking homocysteine protection factors, a combination of B vitamins, folic acid, etc, see spacedoc's page on this subject.

You will have to experiment a bit with Q10 and carnitine dosages and timing of them, but it is well worth the trouble. Now at 85, they are both absolutely essential to my continued existence.

Best of luck with them, and don't let your doctor put you back on statins, I misguidedly let a hospital doctor give me some 18 months ago, while still taking my Q10, but angina soon returned, I might as well have been putting my Q10 down the drain as take the statin, so I stopped them.

CK will come down straight away with carnitine.

[harley2ride]

Is it just me, or do the posts above about Dr. Campbells book and website offer nothing but a way to purchase his information. I didn't spend a lot of time on his web site, but I didn't see anywhere that he actually tells you what will help. He only tells you how to order his book, which will tell you what will help. I'll pass on that web site and book... Doctor Graveline does indeed sell his book, but he also offers lots of free information and help. It is nice that there are some people who really care and want to help, and that they all aren't profiteers, like Dr. Campbell.

[sos_group_owner]

Hi "KWag"

* His CPK is normal
CPK (aka CK) can be normal, BUT muscle damage is still occurring from statins.
Several of Dr Graveline's article discuss "CPK-negative statin myopathy". A few links below...
Expert Statin Damage Case Reviewer
http://www.spacedoc.net/law/statin_expert_review.html
Your Doctor and Statins
http://www.spacedoc.net/doctor_statins.html

* homocysteine slightly elevated at 13.1
There is no safe level of homocysteine (Hcy), but optimal levels are 6.2 or less.
(American Heart Association's journal Circulation, Nov. 15, 1995, 2825-30)
For every 3 points above 6.3, there is a 35% increased risk of heart attack and stroke.
(American Journal of Epidemiology, 1996, 143[9]:845-59)

* Did you all feel better immediately or did it take a long time?
Duration (taking a statin), dose (or dose increased) and a person's chemistry, all of these factors
dictate how long it takes to recover. For some (unfortunately) statin damage is persistent or permanent.

In addition to CoQ10 and Acetyl L-Carnitine, alpha lipoic acid (ALA) is also beneficial for our mitochondrial
function. They all work together to support our mitochondria.

* He has been to 4 neurologists and no one can give him answers.
Sadly, this is typical today. Doctors are encouraged from all directions to prescribe statins, but have
little knowledge to help a patient when adverse effects strike.

Fran