Still hurting after 4 years!

A message board to discuss personal experiences of Lipitor and its effects.

Still hurting after 4 years!

Postby boliver » Fri Jul 13, 2007 9:36 pm

Hi..I am new to forum. Was on Lipitor 4-5 years, had severe muscle pains and cramps and neoropathy, went off the stuff almost 4 years ago and it has gotten somewhat better, but still there. Still have pain in leg and foot muscles and sometimes arms..muscles just do not relax, and then they cramp up. Anything I take (NSAIDS, aspirin, flexeril, tart cherries, etc) is temporary...get rebound cramps and pain as soon as it wears off... especially at night. I also am recently diagnosed with hypothyroid...and have read that condition predisposes some to statin damage. Does anyone have any info about this? Also, I have tried coQ10, small doses...and it gives me chest pains and keeps me wide awake...even at 10 mg! Is this usual? Anything else help? have bought L-Carnitine but have not taken it sensitive to any drug or supplement...and am afraid...are there any side effects from it? And, jeez! How long does the damage last? Will it ever get better? MD is finally admitting (or coming to realize) that statins actuall do damage to muscles...she has several others with similar problems....but most will deny it. Frustrating! Thanks for any help or advice! :?
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Postby Ray Holder » Sat Jul 14, 2007 6:31 am

Hi Boliver and welcome

It is rather difficult to advise you in view of your reactions, especially as you have a problem with Q10, do you take it early or late in the day?

I suspect the thyroid problem is the result of statin damage to Q10 production starving the thyroid of energy to keep supplies up, it appears to happen fairly frequently. Are you taking thyroid medication? Q10 may be putting your thyroid back into action, and then the med sends the level up too high, giving you hyper thyroid problems. Your medic needs to be involved here, if you can get her to cooperate, my old doc was very supportive when I found some answers, but I have to start an education process with his replacement.

Carnitine deficiency is most probably the cause of your muscle problems, Q10 alone is often not sufficient to help with this as it does not act directly on the carnitine deficiency, but helps to re-energise any production capacity still left. Try small doses of carnitine, the only side effect is likely to be loosening of your bowels if you take more than you need.

I suggest to try one carnitine capsule first thing in the morning, well before breakfast, 250 or 500 mg, late in the day it may keep you awake. You can increase the dosage gradually at 3/4 day intervals, problems are unlikely until you get to 2 grams a day, and the cure is to go back by one stage. If you can tolerate it, a large dose is best distributed over the day, try to get it at least 2 hours after food and 1/2 hour at least before food, a bit difficult to juggle, but avoid taking it too late in the day.

I need 6 grams daily, but I have post polio syndrome, and really needed carnitine supplement before the statin damage occurred, so it has hit me twice as badly.

I take L carnitine, but for muscle pain, some have found Acetyl L carnitine just as good. If you can only tolerate a very small dose, persist with it, the pain is caused by lactic acidosos, needing carnitine to carry waste "combustion" products out of the muscle.

The Washington university of St Louis website, neuromuscular department, gives access to an index panel where you can look up Myopathy from lipid lowering, CoQ10 deficiency, and carnitine deficiency, look well down on the latter, where the section MADD shows carnitine deficiency to be allelic with Q10 deficiency. It may help to convince your doctor.

Ray Holder
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Postby SusieO » Sat Jul 14, 2007 7:37 am

Greetings Boliver! I stopped Lipitor three years ago and still have a great deal of problems as you do.

Join the club in not being able to handle any amount (no matter how small) of CoQ10 - I get awful headaches and indigestion from it. I have tried taking it all times of the day and down to 30 mgs. and still get the same results.

I have chosen the route of not taking any other meds or supplements - just an 81 mg asiprin because it seems all others I try only make things worse. Are those taking all the suppelements cured or better than I am...who knows since we all still have problems to some degree.
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Postby boliver » Sun Jul 15, 2007 12:53 pm

Thanks for the reply. Seems like since I started with this problem, am so sensitive to meds, vitamins, calcium, mag, anything! Anything having the potentil to keep me awake does so also. Aspirin seems to best so far...ahlps the pain and relaxes the muscles just enough to ge to sleep. but can't take too much due to stomach problems. I will try toe Acetyl L-carnitine and see what happens....and keep reading the posts. Helps to know I am not alone!! :)
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Postby boliver » Sun Jul 15, 2007 1:11 pm

Ray...thanks for the lenghty reply. If I repeat myself it is because I have not figured out how to reply to individuals, or does my answer go to all that have replied to me? If so, thank you too, Suzie. I will try to Acetyl L-carnitine tomorrow....that is the one I bought. I did take to CoQ10 in the AM but am so sensitive (especially since the myopathy problems) that is still keeps me awake...and after 5 days of taking it, I had a spontaneous nosebleed in the middle of the night. The only thing I can attribute it to is the COQ10...did nothing else different. None since I stopped. Have to try one thing at a time...I began taking Levoxyl .25 mcg about 45 days ago but still have problesm with that. Do not know what connection my thyroid has to statin problems but something for sure! The Levoxly seems to help ( almost has a sedative effect, though not supposed to do that)_ and when it wears off, end of day, muscle pains are back full force. I have split the dose of Levoxyl to half in AM and hLf in lessen the effects. Seems like it is all connectied some how, but don't know how. I use aspirin, tart cherries, flexeril...whatever to get to sleep. I switched to SYnthoid for one day, and my muscles cramped up so bad, I went back to there is some connection. My head spins with so much thinking about connections I get thoroughly confused! I am also going to check out the website you suggested to see what I can find out.....thanks for your help. I see you are in England. May daughter just returned from London yesterday...a business trip....she loved it!
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Postby boliver » Sun Jul 15, 2007 3:41 pm

have just done some checking on the web for MADD on the Univ. website in St Louis...interesting! Did not know what MADD was> I also did some research on using l-carnitine and found that it is contraindicated if using thyroid meds. Which I am. Guess it has been proven helpful for oare already low (hypothyroid) on thyroid, (which I am) it may cause problems. So will keep searching for ways to improve pain and spasm without coQ10 and l-canrintine...does not leave much!!
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Postby cjbrooksjc » Sun Jul 15, 2007 8:42 pm

boliver: Hypo just means your parathyroids aren't producing enough or any thyroxin. I am hypothyroid and take both CoQ10 and ACL. Have your thyroid levels checked while on the supplements and adjust your thyroid meds accordingly. You should be able to take both CoQ10 ans ALC if you manage your thyroid med intake properly.


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Postby boliver » Sun Jul 15, 2007 9:35 pm

Thanks...will check it out with my MD.....would like to try it to see if it helps.
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