Relief for my leg muscle pain!

[Darrell]

I'm a 51-year-old Zocor and Zetia victim with my right leg most affected. It started almost a year ago. Stopping the meds and starting Q10 helped a lot, but I still had weakness and aches getting worse as the day went on.

I used an elastic knee brace and a cane when things got really bad, but the brace was too tight so I would pull it down on my calf when I needed some relief from it. A couple of weeks ago I realized that the compression on my calf made my calf feel better, so I started experimenting with compression stockings (support hose). Wow! The muscle weakness is no better, but the aches are eliminated using a thigh-high, 15-20 mmHg, medical-grade compression stocking!

The literature that came with the stockings indicated that the leg vein "valves" are little muscles that will allow blood to pool if they're not working well, so I conclude that the weakening vein valves and blood pooling are the causes of my aches. The stockings reduce pooling. Aside from discovering Q10, this is the best thing I've discovered in a year. This morning I went shopping for several hours -- something I haven't been able to do for almost a year without "paying for it" with aching for the rest of the day.

I ordered my medical-grade stockings through the Ames Walker website at ww.ameswalker.com. (No, I don't have any vested interest in Ames Walker.) Be sure to get the thigh-high "graduated compression" stockings if you give this a try. Good luck!

[Ray Holder]

Darrell
I think a trial of Carnitine might help your leg weakness, please see my posting on 14th.
My muscle weakness was due to post polio plus statins, but I feel sure that statin induced weakness comes from the same cause. I would try some L-carnitine, there are no side effects to trouble you, it is worth a try, as my results were considerable.

Good luck
Ray Holder

[Darrell]

I've become quite the meds skeptic, but this is indeed interesting. Check this out: ods.od.nih.gov/News/Carnitine_Conference_Summary.aspx
Thanks for the lead, Ray!

[Darrell]

My early results with L-Carnitine are amazingly positive. I have had a very active day today with no support stockings and no leg ache. I'm taking 1,000 mg/day at this point (250 mg each at four different times). I'll keep you posted.

Today was so good that I'll be crushed if it doesn't last. My best day in 16 months. And the L-Caritine has been readily available in the grocery store the whole time!

[Ray Holder]

Just two points, Darrell, you may find that you get a loose bowel if you don't build up the dose gradually. W Australia recommend going up from about 500 mg a day, by 250mg steps until your bowels object, and then drop back one step, but you may get away with it if your need is sufficient.

One other point is that you may have a job to sleep at night if you take some too late in the day. Opinions vary as to when it is best to take it, I take mine first thing in the morning and that is what WA recommend, but I have seen others say distributed doses. You pay your money and you take your choice and it's a good thing to try something different.

Some people develop a fishy odour if they take too much, I havent found that myself.
I hope your early success continues, when in hospital last year, my muscle wastage measurement, CK, was 500 one day when I had not taken carnitine for a few days, and fell within 3 hours of my first dose in hospital to a normal 200
Ray

[Darrell]

Here's some interesting research on L-Carnitine treatment for myopathy:
ww.gyxe.com/diabetes/19-156-l-carnitine-and-myopathy-read.shtml

I had another great, busy day today, Ray. I can't thank you enough!

[Darrell]

The L-Carnitine is still working great for me. A 500 mg dose gives me about four hours of relief while doing activities such as shopping, yard work, etc. I'm taking 2,000 mg/day with no GI or sleep side effects. I really hate it when I don't re-dose in time and go back to the leg ache for awhile.

[Tia]

Hello, I was on Vytorin for 2 years, I went off it one month ago after reading the information on this site. My leg and arm musle pain has declined by 80% using Q10 and L-Carnitine. My question is, how long do I continue to use them to help keep the pain away. Has anyone been healed? I cannot find one person on this site that says the nighmare is over, my hope is that they get better and move on to a wonderful life, but I am not sure.
And why is there not a class action law suit or is there? I just went through (and I understand I am not a lone here, some cases are alot worse then mine ) losing the last two years to this drug. We need to stop the drug companies. I have just spent the last two years making my health insurance go up because of going to different Drs. because no one would look at Vytorin as the bad guy. I was working on their Lupus theory the week I found out from a friend about this site. Thank you all for being there!!

[Darrell]

80% is great, Tia! Get as much exercise as you can to try to rebuild muscle. Try adding a support stocking to reduce your leg pain -- a 15-20 mmHg compression one helped reduce my leg aches before Ray introduced me to L-Carnitine. The stocking didn't help with gradual weakening during the day, but it did reduce the aches.

How long do we continue on Q10 and L-Carnitine? I haven't run into any of "the cured" either. I'm prepared to take both for life. It's a minor concession to avoid going back to where I was a little over a month ago and the 16 months of misery that preceded that L-Carnitine revelation. I'm hoping that my increased exercise now will eventually replace damaged muscle with healthy muscle, but only time will tell.

[Tia]

Thank you for your reply. I understand about never going back to the pain. My son graduated today (6 years old) and I looked at him, and thought of how much time I lost with him, playing sports, pushing the swing etc. these last 2 years. I was bodybuilding before all of this happened. I have not been back to the gym in a long time for fear that it would make the pain worse.
If it will make me feel better, I will get back on it, I love building muscle...it is nice to feel back into some kind of control. I hope you will get full recovery, but don't forget to get back on line and let us know there is more hope out there!

[Ray Holder]

Tia
I should be careful about taking too much energetic exercise, the muscle problems seem to stem from a shortage of carnitine produced naturally. Carnitine has to be available, molecule for molecule, for fat fuel to reach the part of the muscle where energy is produced, without fuel the muscle will feed on itself to make the energy demanded, wasting away in the process. thus carnitine is used as much , in proportion, as the fuel itself, and available supplies can run out.
I would suggest reasonable exercise, but not to excess, your body will complain when your carnitine supply is getting low.

[carbuffmom]

I would have to agree with Ray. I am also a former statin user (13 yrs).
I developed weakness in my hands and right arm with muscle atrophy in my hands. I am currently undergoing Occupational Therapy. It seems to be helping with the dexterity in my hands, but the contant strengthening exercises for my arm seem to aggravate the weakness. I don't know if this is a good thing or not. My arms twitch a lot afterwards also. I should also mention that one doctor has suggested that I may have ALS, but I think it's from switching to Vytorin as my symptoms have not gotten worse since I stopped taking it. I am taking all of the supplements including carnitine and I hope I will improve soon. My best to you all.

[Darrell]

Yes, a clarification: I am only exercising when my muscles don't ache. If I'm doing things like shopping or yard work and the L-Carnitine wears off and the aches begin, I reduce activity quickly. Otherwise, it's just like before -- the aches intensify and I eventually get weak and shakey with no chance of recovery for many, many hours. I try very hard to not let the L-Carnitine run out. I take 500 mg every three or four hours. If I delay a dose and the aches start, it takes at least a half hour of aches before the dose kicks in. I really hate that because I know I could have avoided it.

[bunnylady]

Couldn't take 1,000 mg at a time and go eight hours?

I am so weak can't throw the frisbee for my dog- going to get my L Carnitine today- am so excited after reading your story!

Patty

[Darrell]

1,000 mg for 8 hours? Possibly. Ray takes his in one big dose. I don't really have a reason for every 4 hours except that I started that way out of caution (potential gastrointestinal problems) and just kept doing it that way. You've motivated me to try for 8 hours tomorrow. Thanks.

[harley2ride]

I've been taking 2000mg fish oil, 500mg magnesium, 1000mg coq10, and recently added 900mg L-carnatine (3 x daily 300mg). While I have noticed a slight improvement in the pain and cramping, my muscles still hurt at least as bad as they did 3 months after stopping crestor. Less spasms, less cramping, but still no endurance or strenght gain, and I still wear out very quickly when doing minor chores. I will try to continue to slowly upgrade my l-carnatine, and see if it helps any more. The problem is that it takes about a month to see if it actually helped or not, or if it was just a fluke. All I can do is take it one day at a time, and see what happens. Good luck and best wishes to all of you that are in this condition.

[Tia]

Yippee, I found out why I started hurting again, it was when I saw Bunnylady's question about taking a large dose of Q-10 in the morning. It reminded me that I USED to take 1,200 mg Q-10 each morning. Last month when I bought a whole bunch of the pills, I separated them all out, in what I call my pill sandwich bags, and I had spread out my dose through out the day. It only has been 3 days since I put most of my Q-10 dose in the morning and I just have a bit of a sore morning and then I do pretty good the rest of the day. Hope everyone is getting better each day!

[Darrell]

That's great, Tia!

Bunnylady, I started taking my L-Carnitine twice a day at 1,000 mg each time vs. my old way of four times a day at 500 mg each time. It works fine. No gastrointestinal problems. Now I just have to get up the nerve to try taking it all at once in the morning. I think that day may be tomorrow since my schedule is pretty clear for any potential gastrointestinal problems. Thank you for the suggestion.

[bunnylady]

That's great you guys- I have no problems with the L-Carnitine and take
1,000 mg at once- I was so good yesterday its amazing

My daugher gave me her prednisone pills she takes for Lupus- she told me to be very careful as they are addictive and thin your skin out- I took them for 3 weeks and it helped A LOT- then my weight loss doctor prescribed phen phen (yes they still can presribe it) and now I can actually go all day w/o a nap and get up early instead of 10 a.m.

I have gained 30 lbs since this mess- I spend a lot of time sleeping and sitting at the computer

[Darrell]

I have started taking all 2,000 mg of L-Carnitine in the morning along with all 600 mg of Q10. Everything is fine. No GI problems. No short-term relapses due to forgetting to take my meds. No muscle problems. Thanks again, bunnylady!