My story & concerns

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

My story & concerns

Postby chzuck » Mon Apr 25, 2016 7:24 pm

New to this forum, but a long time user of Simvastatin with concerns. My records indicate that I started on Advicor in 2007 and switched to Simvastatin in the middle of 2008. After the recent news report on NBC I began to think about my leg pain. Probably starting several months ago I can barely stand up when I first get out of bed and usually sit in a recliner for 10 to 15 minutes before making my breakfast. If I make breakfast first it is difficult standing at one spot due to pain in my leg muscles from my butt to my ankles. This lessens as the day goes on and I can function pretty well although there are some levels of muscle pain in the legs. I figured this was due to Spinal Stenois. I had surgery in 2012 on L5, but the surgeon said 2 other vertebrae had some levels of stenois. I figured one of these got worse. Well after seeing the news report on Statins I decided to stop taking mine for 2 days. The first day I noticed a big difference in the level of pain. Going up the steps from my basement bedroom went so much better than before. The second day was even better. Well I went back on Simvastatin and the next morning was back to the level of pain I had before.

I have read much on this site about the side effects of statins and the views of several doctors who wrote articles posted on the site. Needless to say I am greatly concerned. How do I know who is right? There is so much half true stuff on the web these days one really needs to be careful in what they take as truth. When I went on Advicor my cholesterol was around 220. At that time I was more concerned about my elevated blood pressure but the doc put me on cholesterol and only later did he finally put me on BP meds. I want to try taking 200 mg. of CoQ10/Day to see if that does anything for the pain.

I currently take 20 mg tablet at night and my last cholesterol was 140.
chzuck
 
Posts: 6
Joined: Mon Apr 25, 2016 1:57 pm
Location: Elizabethtown, PA

Re: My story & concerns

Postby jrm0rgan » Sun May 01, 2016 10:28 pm

Hey welcome to the club of concerned statin users. I hit on your forum entry tonight too late to give this reply all the thoughts and input it deserves.
My first thought for you is that you have started on a journey, by inquiring into this statin side effect stuff, that is definitely a lengthy trip. I am convinced
by all that I've read in spacedoc.com web site and found confirmed on numerous other sites, that you will find here or be guided to the open and clear
evidence that will deliver you to the conclusions that I have about the scenario that caused this to happen to you, me and quite literally thousands of others.
Your very clear description of the leg pain you experience each day is mine exactly starting about three years ago. If you stick with the forum, you will read that
many other in here with us have these symptoms ( some worse ). I would like to share with you that my symptoms are much improved these days. The improvement
took time and a lot of try this and that. Most of the credit I give to Dr Graveline for being made of the "right stuff" and continuing on through his own great trials to make
this arena possible for all of us. I want you to let me know you are open to my input further.
Hang in there,
James - in real life

PS - do you swim at all ?
jrm0rgan
 
Posts: 9
Joined: Thu Feb 11, 2016 11:52 pm
Location: Loveland, CO

Re: My story & concerns

Postby chzuck » Mon May 02, 2016 6:45 am

No, I don't swim.
I am off my statin 5 days. Now I am having doubts because this morning was especially painful in my upper leg muscles and left back below the shoulder blade. Is it normal for pain level to actually increase after stopping the statin? It seems the level of pain drops the longer I am up, but never goes away completely. By the time I finished my breakfast the pain level had lessened. I almost could not sit in my chair to eat breakfast. It was never quite this severe before.
chzuck
 
Posts: 6
Joined: Mon Apr 25, 2016 1:57 pm
Location: Elizabethtown, PA

Re: My story & concerns

Postby jrm0rgan » Mon May 02, 2016 9:22 am

Well, I just asked about whether you're a swimmer because lap swimming has been my primary avenue of both pain reduction and the only activity to give
myself any cardio affect. Until very recently, I could not walk longer than 10 to 15 minutes with out the pain becoming a real issue. I started in the local city
indoor pool about two and 1/2 years ago. My measure of when I have done done good for the affected leg and butt muscles is when I walk out of the pool facility with
less pain than when I entered. The Arthritis Foundation web site actually pointed me in the pool direction citing the benefit of low gravity exercise in warm water.
My regular doctor has pronounced that my muscle problems are a result of the arthritis......... he is the prescriber of my statins starting about 20 years ago. I quit them
on my own after 10 years or so. Ironically, he also is a statin user and has suffered longer and more severely than me. He never stopped statins yet and persists in
believing.
Anyhow, I wonder if you have been able to do much reading from the articles listed on the spacedoc.com home page ? As there is no as yet established quick and easy therapy on the shelf for this stuff, you really should take in the accumulation of the many peoples' ( doctors and other professionals ) input to the topic of statin damage. I will gladly share my own experiences with you and indicate what has helped ( like swimming ). There are several points of relief I have come to feel are most helpful for me, however as you will read in the Forum, the relief point for some are not the same for others. So just hearing my best treatments may not be yours.
I know it is really frustrating to hear that there's not an instant fix. In my case the realization that my muscles ( primarily right leg ) were degraded in their ability to do the work normally expected, was hard to get past to accepting. I have come to accept that this condition took years to develop and will likely take as long to remedy.
I see your situation as perhaps in an advantage to my own in that you have not been in-taking the drug for so long and you got a faster response ( higher dose ?).
The hope I see for you is that you may have a shorter time to reverse this stuff. Maybe i'm already telling you more than you wanted to hear........
jrm0rgan
 
Posts: 9
Joined: Thu Feb 11, 2016 11:52 pm
Location: Loveland, CO

Re: My story & concerns

Postby jrm0rgan » Mon May 02, 2016 10:00 am

I forgot to address your "having doubts" since your muscle pain seem to be increased even after you have ceased statin intake. Well my real pains never occurred while I was taking the pill. The indicator that got me suspicious was increasing weakness. The pain started at least two years after I stopped the pill. My day to day level of pain is never the same. One day it will seem as if it it practically gone and the next day it's back. It is rare for two days in a row to be the same. The affected pain area is in the butt muscles one day and in the lower thigh the next day and yet another area the next. It freaking moves around. I have the name of a topical pain relief cream that has gotten me through some bad days. Go on Amazon and read the reviews. PENETREX is what you search on. Supposedly they now carry it in
Walmart. $20 - $25 for a 2 oz jar is not a big investment to make a day more tolerable. Soaking in an Epsom Salts bath is also a thing I have tried with an impressive
reduction in pain. Read up on that. I've not found a down side for the hot bath soak yet. I have tried numerous other products, pills and such for pain. I can't recommend any of those since none did the job like the two above here. One thing, read up on the effects of the over the counter pain remedies that we see on TV.
NSAIDs are not so good for the liver and so on.......
What I'm aiming for is for you and I to learn about the correct approach to finding the correct level of vitamin / supplement / nutrition that will enable a rebuilding of the
affected system in our muscle pathway that will enable re-birthing our body's abilities. I don't know all the answers. That's why I'm on this site and others looking for
answers.
jrm0rgan
 
Posts: 9
Joined: Thu Feb 11, 2016 11:52 pm
Location: Loveland, CO

Re: My story & concerns

Postby chzuck » Mon May 02, 2016 10:08 am

I much appreciate your input. I am puzzled why my pain is so high when I get up. No pain while in bed, just when my feet hit the floor. As I said, at first the pain was less and I was convinced it was the Simvastatin. As the time goes on now I am not as sure as I was. I did start taking 200mg/day of a CoQ10 supplement. My doctor said try 6 weeks off of the statin and see how I am and decide what is next. Does your muscle pain seem more severe when you first get up?
chzuck
 
Posts: 6
Joined: Mon Apr 25, 2016 1:57 pm
Location: Elizabethtown, PA

Re: My story & concerns

Postby chzuck » Mon May 02, 2016 10:11 am

Wondering what you have done to address your cholesterol level issue?

A few years ago I had weakness in my legs to the point I had to use my arms to pull myself up stairs. My problem then was spinal stenosis. I had L5 cleaned out and that took care of the weakness.
chzuck
 
Posts: 6
Joined: Mon Apr 25, 2016 1:57 pm
Location: Elizabethtown, PA

Re: My story & concerns

Postby jrm0rgan » Mon May 02, 2016 10:43 am

To answer your question first this time, there was a period when my leg pains were so bad in bed, it woke me up earlier than I normally would. To this day, I now wake
at 5 or 5:30 AM. But I would have to say we differ in that getting up and moving around on my feet and just going to my office chair and sitting at the keyboard was my
pattern. My wife at one time ( never a statin user ) had a similar pattern on pain on hitting the floor out of bed. Her issue was planar factitious which she still experiences and has learned to massage, and use ice cold soaks. My pain seemed to start in bed while at no activity. At one point the legs felt as if the muscles were
involuntarily contracting and I had to wake up to consciously push my legs to a straight position. Cramping of the muscles on the back side of the thighs and calves became a new issue for some time. Adding Potassium supplement seems to help there. More recently, we added a thing called a "Whole Body Vibrator" to our
assortment of massage and stretching devices. Since another side effect of my condition is peripheral neuropathy in my feet and with weakening legs you get to
balance loss issue, this was one of the recommend therapies I gained from a Spinal Correction Therapy establishment that helped with my sciatica trouble but had no
clues about the nerves / muscles trouble. For your out of bed pain I would just have to guess that there is something you need to add in a nutrition direction. Try a search on this forum for the item that specified the intake of low sodium V8 or tomato juice to increase potassium. I'll look for it but this is a good reason for you to
give a try at the search of the forum.
jrm0rgan
 
Posts: 9
Joined: Thu Feb 11, 2016 11:52 pm
Location: Loveland, CO

Re: My story & concerns

Postby jrm0rgan » Mon May 02, 2016 10:44 am

I found the tomato juice forum item :
Re: muscles feel as though they're contracting
Postby schatzi » Sun Apr 10, 2016 1:50 pm

David, just read your post from Dec 2015. I do have the same issues with muscle contraction, not just in the calves and upper thigh, also in the upper abdominal area and sometimes in my arms.

I have found that drinking Low Sodium V8 or Low Sodium Tomato Juice, 8oz, once or twice a day, especially before bed time has been very helpful in alleviating the problem. 11.5 oz of Low Sodium V8 Juice provides 1180mg of Potassium.

My husband and I both swear by that. We both have peripheral neuropathy, mine from long time Statin use, his from Agent Orange exposure and subsequent Diabetes.

Hope it helps you as well.
jrm0rgan
 
Posts: 9
Joined: Thu Feb 11, 2016 11:52 pm
Location: Loveland, CO

Re: My story & concerns

Postby chzuck » Mon May 02, 2016 10:57 am

I don't think my problem is planar factitious. When my feet hit the floor the pain is basically form the knee up to the butt on the back side of the leg. Have had some leg pain in bed, but that is rare. Usually in the morning I find stretching out on the recliner helps, but not this morning. One other thing I find strange. When I cough, my muscles in the legs hurt. Sometimes I actually have to brace myself by placing my hands on the kitchen counter or a chair. I guess in effect tensing the muscles.
chzuck
 
Posts: 6
Joined: Mon Apr 25, 2016 1:57 pm
Location: Elizabethtown, PA

Re: My story & concerns

Postby jrm0rgan » Mon May 02, 2016 11:29 am

I really didn't mean to suggest planar factitious, but rather perhaps a path to pain relief, massage and cold. The description you just gave makes me think you are
dealing with more than my statin damaged muscles. The rush of pain when you cough seems like you are expressing a severe inflammation as in an infection. I am not
at experienced with your brand of leg pain. If it were me, think I would try to find a neurologist type Dr. I don't wish to have you chasing all my uneducated guesses when you seem to have a pretty significant symptom set for something we both know nothing about. Don't wait !
jrm0rgan
 
Posts: 9
Joined: Thu Feb 11, 2016 11:52 pm
Location: Loveland, CO

Re: My story & concerns

Postby chzuck » Mon May 02, 2016 12:02 pm

Thank you. I am to see my family doctor soon. If I don't like what he says I will not hesitate to go further. That is what happened with my spinal stenosis. Family doc wanted me to take better pain killers. I took if upon myself to see an arthritis doc. He prescribed an MRI which plainly showed the stenosis and from there went to a surgeon.
chzuck
 
Posts: 6
Joined: Mon Apr 25, 2016 1:57 pm
Location: Elizabethtown, PA

Re: My story & concerns

Postby jrm0rgan » Mon May 02, 2016 1:18 pm

Sounds to me that you are now troubleshooting with a better weapon than my shotgun approach. I have been evaluated by Chiropractors, Physical Therapists, Radiologist, my MD of course, Nerve Pain Specialist and have yet to hear that any of them have a clue...... the cynic in me believes they are all wary of taking a
position / opinion that is contrary to big pharma. I would make one last suggestion for you as you move forward. Don't "offer" any information that would give a
medical profession any hint that you might suspect a statin issue........ wait to be asked and then just the facts no opinion. Remember when you take your car to a
shop and explain what you think is wrong ( it needs a new whatamcallit ) , that's what you are going to get.
jrm0rgan
 
Posts: 9
Joined: Thu Feb 11, 2016 11:52 pm
Location: Loveland, CO


Return to Vytorin (Simvastatin and ezetimibe)

Who is online

Users browsing this forum: No registered users and 3 guests

cron