Muscel Tremors

[uncle2blade]

I've been off statins nine months now. I do have more energy now, and the muscle pain isn't as bad. Now I am having muscle tremors that don't stop, down my left side and down my leg. Has anyone else expierenced this.
Thanks for any input. Craig

[cjbrooksjc]

Craig: I'm not sure if it is the same, but I have those tremors in my legs - much like the little twitches one gets around the eye on occasion, just bigger and more involving. They don't last all day, but they last for a few hours when they come. I like to think that anything different is a sign of on-going repair, and the twitches are a new development. I still get cramps in my back and ribcage, but very seldom and not as severe. I know I'm getting better; it is simply taking a long time. Maybe the twitches are new and improved muscle tissue trying align itself properly again... it's a nice thought anyway.

Regards,

Brooks

[mags]

I also got twitches months after going off of the statin but they do come and go. Does anyone else have this pain at the bottom of the ribs and have they found out what it is? I keep thinking it must be my liver though liver function tests were normal. Drs of course never could explain it.
Thanks for any input....

[mags]

Craig, just noticed that you are from Ceveland. Isn't it wonderful that we have "world class care" here?

[cjbrooksjc]

Mags: Your Gall bladder shares the same real estate as the liver, and gall stones can cause pain in that area. You might 'Google' gall stones + symptoms or symptomology for more info. Pain is a strange thing though and can travel far from the actual problem, ie: kidney stones, spinal compression, etc. can manifest in the same place and be tough to diagnose.

Best,

Brooks

[bucho]

I had muscle tremors throughout my body for the first 6 months after quitting zocor (after 3+ years on it). My triceps and my left-side pectoral (chest) muscles would continually twitch 24-7 and were painful to boot. Also, I would experience an all-body myoclonic "jerk" whenever falling asleep. The contraction seemed centered in the stomache muscles, and would bring my knees up and knock me wide awake. By 9 months the twitching was gone, and the myoclonic jerk was pretty much gone. Now, at 20 months statin-free, both of these problems are entirely gone.

When laying down to sleep I also experienced a "pulsing" sensation throughout my body, starting behind my eyes (this is difficult to describe!) and radiating all the way down into my legs. The "pulsing" was about 4 times my heart rate. This sensation too has gradually tapered off and is now essentially gone. However, it can return at a low level under stress or intense activity.

[mags]

It has now been 3 months off of the med and after feeling better for about 2 of those I now feel worse. One leg very "tight" constantly and stretching exercises don't help. Occasional pains throughout my body, lasting only a split second before they go away. I guess I thought I was home free, but no such luck. At what point do you think that you will know if it is permanent? The nurse at the dr's office told me that at least when I come in I could have something wrong with me because everytime I go in with a new complaint they can't find anything wrong. I guess that's good?!
It is funny, sometimes these pains/sensations are hard to describe.

[cjbrooksjc]

Mags: These (set-backs) are a common occurrence during recovery; sometimes worse than others (and certainly disheartening). No one seems to be able to explain it. It's just part of the recovery process. You just have to 'press on' and keep up the supplements. Our experience tells us this will usually pass, and you will continue (two steps fwd, one step back) to improve.

I would suggest you read thru the entries on the forum and use the SEARCH function for keyword searches; you will find useful input here that will answer most of your ?'s.

Regards,

Brooks

[BSGfan]

Interesting posts.

I too find Co-enzyme Q-10 supplementation tends to give me gall bladder, liver, and abdominal and even pelvic discomfort after a few days of constant use. Gallstones have been ruled out via ultrasound scans but I have a touch of fatty liver and irritable bowel syndrome and a hiatal hernia. Perhaps that makes me more prone to adverse GI symptoms than most.

I had been supplementing with Q-10 in the 250-300 mg range daily. Perhaps that is too large a dose for me for a prolonged period. I will cut back below 100 mg daily and see if there is any improvement.

In recent days I had also noticed minor muscle twitches in one hand, which I had initially dismissed as carpal tunnel; now I am wondering if it might have been a reaction to either the Q-10 or to the Acetyl-L-Carnitine I also was briefly supplementing with. I halted the Q-10 and the ALAR and noted the symptoms subsided. Again, perhaps a smaller prolonged dose of Q-10 would be more sensible for me.

[colcath]

I started taking lipitor 8yrs ago slowly things started to happen with my left foot twitching in the arch.Then it spread to the calf.then it went to the right leg.Doctors put it down to back problems.Now they are all over stomach,hands,cramping under the ribs.Walk like an old man use walking stick and mobilty scooter to get around,and iI am only 53yrs old.Had test's done neadles in legs I think it was an emgthey said nothing shown up.That was five yrs ago since then have gone worse.So I started finding out facts,and alot of the people on statins were having the same problems so I decided to quit the statins 4months ago still the same at the moment except my liver has improved.But every time I went and seen a neuro they would say are you taking statins but did not go any further.It was as if they were trying to put a link with them.So I think sooner or later the truth will come out and they will stop diasableling people.By the way I am from england.

[adec]

Hi colcath, and welcome to the forum.

You might just want to watch this Youtube video from a fellow Englishman, succinctly talking about his own harrowing experiences while taking statins.

*http://uk.youtube.com:80/watch?v=7KD7omFDAKo

Scary stuff indeed.

[Ray Holder]

Hi colcath

You are going to need some Q10 and some L carnitine to get you back to more normal life.

I was on simvastatin for 4 years, came off it because my muscle wastage (CK) figure was high, and continued to get worse for the next 14 months before I heard about Q10 deficiency from statins, and also carnitine.

If you are in UK, supplements are not very cheap, but you would probably want to try some before getting larger quantities of them more cheaply from USA

You should try 100 mg of Q10 in gelcaps twice a day for starters, and L carnitine, try a 500 mg capsule a day, first thing early, going up to 2x500 mg after about 3/4 days, beware increasing too fast, your bowels will object.

If they work, both can be bought on line from companies such as iherb.com amd bulknutrition.com at much better prices than in UK, but you can too easily go over the £18 duty free limit,

Ray

[adec]

Bulknutrition.com and don't forget Beyondacenturyonline.com, they probably have an even wider variety of bulk powders. I have saved a lot of money, and heartily recommend both shops. All of their supplements are assayed by an independent lab and available upon request. You then cap your own supplements, or place the powders into a drink. Carnitine by itself almost tastes like rotting limes.

I also use this inexpensive, but extremely accurate (to 1mg!) lab precise scale to measure the supplements.
*http://cm.ebay.com/cm/ck/1065-29392-2357-0?uid=28681093&site=0&ver=EOIBSA080805&lk=ItemDescriptionANDimage&Item=170143163278

For capped supplements, Vitacost.com has the best selection, quality, and prices on the Internet. They also ship internationally. The supplements required for statin recovery are affordable if you know where to look. Here's to good luck and health to all reading these messages.

[the hittman]

Hey guys--

I've been reading all of these posts on life after Lipitor...Extremely helpful to say the least !! I have many of the same symptoms as the rest of you...my question is--My muscle twitching (fasciculations) have been going on since Aug/Sept of '07--started in my left bicep, now they're all over. Most people that have mentioned tremors, have said that their EMG's came back normal...I've had 2 , one was normal, the next showed some wasting...the 3rd is scheduled for 1/31....I am worried to death that this is ALS. I stopped taking lipitor in March '07 after being on it for 1 year (after 4 years on tri-cor)-symptoms showed up in AUG...I take 300mgs of Q10(used to take 100mg's for about 3 years), and just got some carnitine. (will start with 250, then go to 500 mg's) Did anyone have a EMG come back with damage ??, and does anyone have the fasciculations in their face ? So far mine are from the neck down....Any input is appreciated----
Thanks so much..................................Doug

[the hittman]

Mags---
Just saw your post from Nov---I too have intermittent pain at the bottom of my ridcage, on the right side---liver test came back normal----I never thought it was related to statin use----in fact it started before I went on tri-cor...no diagnosis.....(surprising huh?)(LOL)

[carbuffmom]

Hi Hittman:

I took statins for 13 years. I developed severe twitching after an EMG two years ago. I have been diagnosed with ALS, but I have facial and tongue fasciculations. So it's good that you don't have any above the neck. I would increase your CoQ10 to at least 600 mg per day. I read somehwere that coconut oil helps with fasciculations. I take a coconut oil capsule with each meal. Mine have calmed down, but I still have them. Hang in there---many people here have had them go away. If I can help, let me know. Good Luck on the 31st.

DEB

[julius]

Hi Carbuffmom,

I also took statins off and on for 15 yrs until Dec 2006. In April 2007 I started developing twitching (fasciculations), first in my left hand, then in my arms and finally in my legs. All this followed by muscle weakness in my hands, arms and legs and dryness in my mouth. I have to walk around with a cane now to keep steady.

In December after MRIs and two EMGs I was diagnosed with likely ALS. I am going for a second opinion but I am convinced that the statins (Zocor/Simvastatin) have something to do with this.

I will start to take:
- detoxifying baths (Bentonite Clay, pharamaceutical grade) to rid my body of metals and chemicals
- Glyconutrients to increase stem cell production
- Glutathione (3 amino acids)
- CoQ10 (200mg / day)

Any advise is welcome!

Julius

[carbuffmom]

Hi Julius:

I am sorry about your tentative diagnosis. I have no doubt that statins are a cause of ALS. My facsiculations didn't really start until I had an EMG and boy, they started going like popcorn popping under my skin!
They are not so bad now. My arms and hands are weak and sometimes I slur my words. I also have a dry mouth.

First, you need that second opinion. Nothing is ever "for sure" with ALS. I go to a specialist who recommends the following:
CoQ10 400 mg 3X per day with meals
Creatine 5 gms per day mixed in juice

I also take (on my own) 500 mg of l-carnitine and 500 mg of acetyl l carnitine 3 x per day, 1/2 hour before meals. I take 250 mg of magnesium to help with cramping.

I have not tried the detoxifying baths or Glutathione. Let me know how they work out for you. I am trying some Glyconutrients right now (just started). I tried Rilutek for three weeks, but they made me dizzy, so I had to stop.

Keep me posted. you can always email me. Good luck. DEB

[webito]

Hello the hittman,
How did you do with your EMG ?
Regards

Webito