Simvastatin 80 mg pain management or cure, HELP Please.

[billyc]

Hi David
are you saying that Sharon might have Mitochondrial disease? We went to a neurologist two weeks ago and he told Sharon that no way could the statins be causing her pain in the musical in the base of her neck or upper back and pulling her head to the right. He said if it were the statins her whole body would be in pain. We printed out the front page of space doc web site to give to him just to show him what we have been reading, he could care less. He told Sharon to take stronger muscles relaxers and that she could go back on statins. Don’t know if we should go to a new neurologist, I thought they would do a musical biopsy.
Thanks Billy

[David Staup]

Billyc

you should have printed out the mayo page as I suggested...this one!:

"http://www.mayoclinic.org/medicalprofs/statin-intolerance-clinic.html


If you have read anything here it's that doctors refuse to believe that statins "do that" and they are wrong!

I would get a whole new set of doctors... and show them THE MAYO PAGE!!!

PRINT OUT THAT PAGE AND READ IT UNTIL YOU UNDERASTAND IT>>>

DISCUSS ANY PART OF IT YOU DO NOT UNDERSTAND HERE FIRST>>>

tell us where you live, maybe someone here knows of a doctor in your area....

DO NOT GO BACK ON THE STATIN!

[lars999]

BillyC,

You got the standard shoddy treatment from that doctor! He might have paid some attention to something from Mayo Clinic, but, don't count on it. Doctors are wonderfully capable of ignoring any negative information about statins. You should find a new doctor or doctors, although, my experience has not been very positive, with ALL GPs and cardiologists visited being statin-lovers (statins don't cause bad things ... period, end of discussion).

Last time I visited doctor that prescribed statins for me, I went in with a very complete write up of what I have been through with Lipitor and how things had improved after I quit (without his particiption in that decision). He very pointedly ignored it and started asking me a bunch of irrelevant questions and poop-pooping my answers. I have never been back and made it very clear I did not trust anything he said about statins and cholesterol.

My experience with muscle pain from Lipitor is that, yes, it did affect ALL my muscles BUT, some much, much worse than others. I have a simple explanation for why some muscles became much more painful than others. Statins weaken muscles, making it easy for a physically active person to strain or otherwise damage muscles, leading to those muscles becoming much more painful than muscles not overworked. That explanation fits my situation very well. I can easily think that ANYTHING that would/could have caused her neck and shoulder pains will result in much worse pains, etc. because of statins. I am now more than 1 and 1/2 years off Lipitor and I still have muscle problems (pain and control the main ones) way beyond normal for me. I especially have to be careful with repetative motion type situations because it is so easy to overdo it and be wiped out for many days and suffer long lasting limitis on use of those muscles.

Lars

[billyc]

now the pain management doctor wants to try a epidural on sharons neck, he has already performed a nerve ablation procedure that has not helped, he also injected the mussel with some type of storied that did not help, we went to the orthopedic he had her get an MIR, he looked at it and said I see nothing wrong with your neck to cause pain. so she asked him what could it be if not the statins, he said I Don't know keep trying physical therapy, my wife is real active but she thinks the 3 months of physical therapy beat her up more then anything.

[Allen1]

Billyc, what most of us have found when exercising is that it makes things worse, it is called exercise intolerance, gentle movement/exercise is OK in small doses when she feels up to it. Do not under any circumstances allow your wife to be persuaded to take another statin!

Localised pain and weakness is not that uncommon, I think I mentioned earlier that I could hardly hardly support my head for a while or even keep my eyes open and I was extremely tired at the same time, that would last for a few days then fade away for a while then reappear again days later. Most of the pains and weakness seemed to move location on me especially in the lower back and hip area and there were also many combinations of problems that would manifest and change.

I feel sorry for Sharon having to go through all this and I would maybe ask the doctor to put on hold any other form of treatment for at least another 6 months to see if there's any noticeable improvement before undertaking an epidural or other serious measures.

It is a slow road to recovery with many potholes on the way, hopefully things may start to improve in a further 6 month period, leading up to a near full recovery in a couple of years. During that time there will be good days and not so good days, but it should get much easier and less painful as time passes

I know it sounds bleak but there is light at the end of the tunnel.

All the best,

Allen.

[lars999]

Allen expressed it best ... too much physical activity for a given individual can quickly make muscle and ligament pains worse, much worse. Please take that as a basic consequence, no matter what your naive and misinformed doctors say.

I have always been a very active person and accoustomed to levels of physical activity well above that of most folks. Statins trashed my ability to be active and especially to do any of the physically demanding activities I had been doing for 70 years. I am now, 1,5 years later, maybe half way back to normal.

To subject a basically inactive person (by my standards) to physical therapy while still under the adverse effects of a statin drug, is just plain stupid. I spent almost a year carefully working my way to slightly higher and higher levels of physical activity and use of various muscle groups. This was the kind of slow, gradually increasing program that I see folks that have been badly physically damaged go through. It worked.

Best wishes,
Lars

[damaged]

billyc,
I shudder seeing your wife doing exactly what I did, only to cause such damage to my muscles that I can no longer function.
I was a healthy, working carpenter when the statins were prescribed.

Then the pain started.

While getting the run around from doctor after doctor I continued to work, because not working meant not eating.
But even though I sought "easier" work with each job, I'm afraid that I permanently ruined my leg muscles. I can no longer walk more than 100 yards and am on disability.

My advice - look into any way possible for your wife to stop taxing her muscles. I've spoken to office workers, etc and some appear to have gained mobility over time after doing *some* damage to their muscles.
But, in my case, I continued working (with the help of pain meds) and as a result crippled myself.

Please be very careful.
Mike