Right now I can't walk.

A forum to discuss personal experiences of Muscle Pain associated with statin drug use.

Postby pmgamer18 » Sun Jun 12, 2011 2:32 pm

Here is a link to there forum.
http://health.groups.yahoo.com/group/Stopped_Our_Statins/join?yguid=154836543&finish=sub
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Postby damaged » Sun Jun 12, 2011 6:36 pm

heh heh...I was afraid that you'd say that it was the yahoo group.
It just keeps taking me in an endless "sign in" loop.
Probably some scripting issue. As a result, it won't send a confirmation email.
I've had this problem with one or two forums in the past, but I'm not wild about enabling activeX globally (knowing the inherent dangers) in order to read a board.
But, thanks anyway.

mike
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Postby pmgamer18 » Mon Jun 13, 2011 9:57 am

Sorry your having this problem I do know once you join up you need to give the mods time to approve you we get a lot of spam and I like yahoo for this it keeps the spam out.

If you have a lot of cookies some sites will not load up.
Phil
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Postby pmgamer18 » Sat Jul 23, 2011 12:02 pm

Just an update I now have a bad bladder and Kidney infection for the first 6 days my Dr. gave me Cipro. I started having more pain and did a search about Cipro and the first thing I read was this.
==============================
WARNING

Fluoroquinolones, including CIPRO®, are associated with an increased risk of tendinitis and tendon rupture in all ages. This risk is further increased in older patients usually over 60 years of age, in patients taking corticosteroid drugs, and in patients with kidney, heart or lung transplants (see WARNINGS).

Fluoroquinolones, including CIPRO, may exacerbate muscle weakness in persons with myasthenia gravis. Avoid CIPRO in patients with known history of myasthenia gravis
-----------------------------------------------------
I then called my Dr. and he switched me to Amoxicillin I have been on it 2x's per day 5 days now. I am not seeing much inprovment and I feel it's the pain pills slowing down my voiding.

I can't help but think I could be having kidney damage from the Statin Drug damage my labs are still high for the following.
Myoglobin, Serum High 123 range 50 or less mcg/L. and after reading the link att. in this post high Myoglobin can cause kidney damage but I am not sure if my levels are all that high to do this just worry about it.

Creating Kinase Isoenzymes w/o total.
CK-MM 91 low range 97 – 100 % of Total.
CK-MB 2 range 0 – 3 % of Total.
CK-BB 0 range 0 % of Total.

Creatine Kinase, Total 284 high range 44 – 196 U/L.

I do need iron pills and now for the last 4 labs of every 8 weeks my Ferritin is going why up. I am told this is due the the inflammation from Statin Drugs. Still I stopped taking my Iron pills my labs for Iron are up.

Iron and Total Iron Binding Capacity.
Iron, Total 128 range 45 – 170 mcg/dL.
Iron, Binding Capacity 291 range 250 – 425 mcg/dL.
% Saturation 44 range 20 – 50 % (calc).
Ferritin 382 range 20 – 380 ng/mL.
Vitamin B12 957 range 200 – 1100 pg/mL.
Folate, Serum > 24.0 ng/mL.

Do any of you know if I might have a problem with my kidney damage from Statin Drugs as talked about in this link from my labs.

Dr.'s keep pushing me to exercise or I am going to have heart problems. I feel one set back after the other exercising even walking in a pool of water.

Now I can't do any thing with this added pain in my back from this bladder and kidney infection.

http://people.csail.mit.edu/seneff/stat ... ilure.html

Thanks Phil
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Time

Postby Nancy W » Sat Sep 10, 2011 8:47 am

Hey Phil, I can't answer about your kidneys...not my area of expertise. But what I will comment on is your exercise question. From going back through your posts, I can see that you were on statins a couple of years. Then you came off in 2010. Am I right? I don't really have a clinical answer, even as a physical therapist, but as a statin-damaged person, here are my thoughts.

I am now over two years since I quit. I began with CoQ10 and a raft of supplements, per my naturopath two years ago right now. In about 6 weeks, the neuropathy was noticeably better, but the terrible fatigue went on . At a year out, I still was thinking I would die when I tried to mow our back yard. Over the first year, I tried to go back to the pool, where I had been swimming or exercising at an aerobic pace for and hour, five days per week prior to the statins (which I took only for one month before encountering the problem). I could not, nor have not been able to get back to exercising at an aerobic pace. I can, however get in and move for the whole hour without any detriment. I can mow the yard now and not feel as if I am dying. That is the biggest improvement.

Within year two, I realized that not only was fatigue a problem, but I was, and am having problems with tendinosis...at times, it feels, with little provocation, like my tendons are ripping off their bony insertions. This has, as I enter year three, improved a bit, but hard not disappeared.

My primary presenting symptom, this time around, due to the RYR, (I had one earlier go round with Lipitor and muscle pain and early rhabdo) was peripheral neuropathy from head to toes and fingers. While it is much better, it is still present on a daily basis, even if I take the supplements I am on, in my toes or my left trigeminal nerve (face) to some degree. If I stop the supplement called Neurochondria (CoQ10, Vits B, Acetyl L-Carnitine by Thorne) I have complete global peripheral neuropathy in 96 hours). I found that out when I ran out in Africa last May. All of the neuropathy returns. Now, if I skip a dose, I notice within hours and increase in neuropathy.

So I am left to conclude that the actual "damage" is still there in some way or another. Is it mitochondrial damage? Don't know.

Last year, a colleague went to a conference...she heard a Dr. Brownstein (I think his name was) talk. He said something to the effect that statins remained in the body for 10 years. She called me up on the next break and told me that. Now, I found this guy's website and wrote to him, but he never wrote back. I bought his book, and it does not say that anywhere. I have not been able to find the research so far that would say that.

But, I do go to a very intuitive naturopath, who was working on me the other day, using craniosacral therapy, which we both practice. She was drawn deep into my brain and suddenly said, deep in your brain you still have statin toxins. You need to flush them out. She has suggested I try things like ginkgo, ginger, or even wasabi (Japanese horseradish) to increase the blood flow to the brain. I haven't started yet...

All this to say...I am convinced, as I know others are, that the effects can linger...who knows how long...in certain individuals.

What my naturopath did was increase the Neurochondria, for the second time this summer, in an effort to see if the constant neuropathy in my toes (different toes, different days) could be helped...we will see!

So from my point of view, time has helped, as have refining the supplements. But I am skeptical about whether this will ever "go away" completely...
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Postby pmgamer18 » Sat Sep 10, 2011 10:30 am

Hi Nancy,

Great to hear you can now cut grass I feel so dam guilty when my poor wife needs to do things I can't do any more. I am lucky to have a close family and wonderful Grandkids. The are over here everyday we watch them mom and dad both work.

The help out and cut the grass thing GOD.

I know Dr. Brownstein his office is about 10 miles from my home and you can't get into see him he is booked up.

I know one of his patients that worked with me at a Thyroid Forum she had breast cancer and was dying. He cured her with Iodine today she is a naturopath and works with him to help with his books.

I sent her an Email a long time ago and asked her to find out if Dr. Brownstein said that Statin Drugs stay in the body for a long time. And I asked a friend that knows some one that works for the Dr.

My friend never could find out and I forgot about the women that he curded of cancer. I will try again and see if she can ask him.
http://iodine4health.com/overviews/audi ... visual.htm

Still I think it's true I am better now when we go out to eat I don't take my walker I can walk for a short time but I still pay for it that night and the next day.

I am on Vicodin/Lortab/Acetaminophen/Hydrocodone 500mg/5mg PO Tab 3x’s/day. It's been about a yr. now I can't get off them the pain is to much. Yet taking this drug it slows down my voiding and I ended up with a bladder infection that I did not know I had due to the pain meds could not feel it. I figured out I had this when it went into my Kidneys.

I am now on my 5th kind of Anti's to ride my self of this infection. The one that works is bad on your joints and muscles Cipro so now my Kidneys are better and I just took my last pill. So I hope this is fixed I don't need the extra pain.

I can't do much with this infection I had to stop going for walks in the pool need to get rid of the infection first.

I only have one added place of pain it is my shoulder on my left arm I can't even life it up with out pain.

I am on every kind of supplement that the spacedoc talks about and I feel they all help we have cut back on my Ubiquinol Capliques Featuring Kaneka's Qh from 400 mgs 3x's /day to 300 mgs 3x's/day and next week I am to cut back to 200 mgs 3x's/ day don't know what this is going to do or if it's a good idea.

Because I am a mod on the forums for Man's Health I know some great Dr.'s that have come to my forum from time to time and I get a lot of help from them.

I know there is not much out there about fixing Statin Drug damage and even going to see a specialist like a Dr. for joint and muscle pain.

What a waste of my time and money the 3rd one I see we talk for about a min. and I got up and walked out. They think this problem is not due to Statin Drugs and think because I had Heart Bypass Surgery I should have not stopped them.

It's been a yr. now that I hit bottom with this problem and stopped Statin Drugs I am better but it is so dam slow it's like if I did not keep a log on how I am doing day to day I would not see it.

I bring it out every time my wife says your not getting any better.

I guess all I can do is keep on with what I am doing but the pain pills I need to try a diff. one of get off them.

I don't have a prostate problem but the meds effect me in a way that slows down my voiding. I did try 4 diff. kinds of pain meds before going on Vicodin and this one is the only one that worked.

One of the first pain meds I tired was what the spacedoc takes Ultram/Tramadol 50 mgs 2 pills 3 x's / day this did not slow down my voiding but did not help much with my pain.

I think I am going to try this again it might work now that I have less pain. The thing about the pain is if I don't do much I don't have it. Talk about being between a rock and a hard place.
Phil
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Statin drug side effects!

Postby luckyone » Mon Sep 12, 2011 9:03 am

I used Statin drugs in prior years with negative side effects after about three months usage. Negative side effects were stomach problems. This past year, my doctor wanted me to try Crestor. After a couple months usage, I had severe cramps in feet, leg, and back. I quit couple weeks ago, and cramps are becoming less severe and less often. These cramps happened mainly at night. I think too many people stay with these statins and wind up with permanent damage! Another drug that doctors really don't know what they are prescribing!!
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Postby pmgamer18 » Mon Sep 19, 2011 11:46 am

Hi Nancy,

I seen my Heart Dr. today going over tests all is great I talked to him about what Dr. Brownstein said about how Statin Drugs can say in your body doing damage for up to 10 yrs.

My Heart Dr. know Dr. Brownstein and said it's true Statin Drugs can stay in your body doing damage for about 10 yrs but he did say it's rare and people with this problem don't get better.

So he feels I don't have this part of the problem because I am getting better. Labs even show it.

Phil
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Postby pmgamer18 » Fri Feb 10, 2012 12:02 pm

Hi All,

It's been 39 months since I had heart bypass surgery and after this I was put on Statin Drugs. Yet I never had high Chol. levels in my life. I did not want to go on them but the Heart Surgeon went behind my back and told my wife and kids I would not live out the yr. if I did not go on Statin Drugs.

I was on them 2 yrs in pain from day one when I had this surgery I got a bad infection in my sternum and needed to be opened up 5 x's each time I was on a blood thinner and needed to be left open until they meds were out of my body so they could close me up again. So going through all this I was put in a coma for 14 weeks very long story.

Each time I seen my Family or Heart Dr. I told them the Statin Drugs were crippling me and I can't stand the pain. Each Dr. felt it was my muscle loss due to being in the coma.

And told me to keep on the Statin Drugs and keep getting exercise I kept doing this until I could not stand up or walk anymore.

Now they listened to me and took me off Statin Drugs. My pain was so bad they put me on pain meds.

And little by little I started having problems with them meds and they kept changing them.

I am Hypopituitary My brain dose not tell my body to make Hormones and I give my self Testosterone shots doing this makes my body make a lot of Estraidol.

And I am on meds to keep this down high Estraidol levels in men will make them dam sick for me it's Flashing and Panic Attacks. Over time on pain meds my meds for keeping my Estraidol levels down were not working. So for the last 9 months I have been suffering with flashing and panic attacks day in and day out.

Until I figured out it was the pain meds stopping the Estradiol meds Arimidex and then Aromasin from working.

I don't know if any of you ever had a Panic Attack but I was ready to eat a bullet over this until I figured this out.

Now I am off pain meds and my Estraidol meds are starting to work.

Here is my problem off the pain meds I find I am not any better my Statin Drug damage is not better.

And off them pain meds I can't do much and now it's not just my lower back, hips and upper legs that are hurting me. My shoulders now hurt and I feel this is more damage due to my Dr.'s pushing me to do some exercise sitting down.

They pushed me to try to walk a lot with my walker until I could not do this any more I would end up with a lot of pain doing this.

So here I sit now I can't do much I don't get out much I pay for it in pain when I do.

Yet my Dr.'s keep telling me I need to keep moving or my heart and body will give out.

I sit here and worry about this then I think what are they talking about people that are older all they do is sit day in a day out with out getting much exercise and live a long time.

I just don't know what to do about this and I find my self fighting off feelings of Depression. And the input I get from my Dr.'s telling my family I need to keep moving that makes me feel this way.

The other day my kids and grand kids were over and they were talking about a winter party all the family members were going to this Sat.

And my Daughter asked me if I was going and I told her no I can't go there is no room for me with a walker in this house and no were I can sit with my feet up.

My wife jumped in and said he just does not want to do anything but sit on his A** and his Dr. said he needs to get out and do things.

So now my dam Dr. and my wife have my family thinking I don't want to do anything. Even when I tell them I can't.

I can't tell you how sick I am off all this. And I don't know if it's true not being able to do things is going to take away from like life or not. I do what I can up to a point that it will not set me back and put me on pain.

I am lucky I don't have pain sitting or laying down yet now my shoulders ache most of the day but not bad pain.

I guess I just needed to vent today it's not easy living like this.
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Postby Allen1 » Sun Feb 12, 2012 5:33 pm

Hi there Phil,

I am truly shocked that you had to go through all that. The extra complications that Statins caused should have been at least suspected by the doctors who prescribed them, there have been a lot of reports about Statin side effects and how they interfere with the bodies ability to manufacture things such as Q10 and much more. The doctor should have been aware of this especially since you had all of those problems since the operation and starting statins.

As far as the exercising goes, it can cause so many more problems and injuries as far too many of us have found out the hard way. Only do what you are comfortable doing and try not to overdo it, we have all tried to be strong and put on a brave face while attempting to do what we were able to do before. Unfortunately all that bravado will only make our problems that much worse.

A little bit of moving around will suffice, if you feel up to it at a later date then add to it a little, until then, let your body tell you when its ready for more activity.

Please tell your doctor and wife, the problems are real, they also become worse when exercising, its called exercise intolerance and so many of us that have been affected by statins know how it knocks us for six when we attempt to tax ourselves.

In all honesty, your doctor should really know about such things. Never mind about physical exercise, I also know that even a short time spent with family members is draining nowadays and that includes the very people you love the most.

Take care Phil, I hope your wife gets wise to the reality of the situation and gets off your case, heaven only knows, you have been through enough already.

All the best,
Allen.
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Postby pmgamer18 » Mon Feb 13, 2012 11:10 am

Thank you Allen,

I needed to hear this it helps just last week my younger borther had a heart attack. I was lucky I figured out there was some thing wrong and had Heart Bypass Surgery before the Heart Attack.

So today my Heart is as my Heart Dr. says better this his is.

My borther had the same problem I had 2 100% blockage going to his heart. And the 3rd. one feeding his heart from the back was under developed from birth and only working at 40%.

So he did not listen to me 3 yrs. ago when I told him to have his heart check out.

So now he has damage to his heart and kidinys.

And they put him on Statin Drugs and he knows what this did to me. And he knows from the links I sent him this will not help his heart much.

He is home now but the Dr. says the next 2 weeks will be critical he is like a six cylinder
engine running on four cylinders.

So he will not let him evern talk on the phone until he sees him tomorrow.

I have made up my mind things I can't do I am not doing them I don't care what my Dr.'s say or others say they are not in my body. They have no Idea what this pain is like when you do things and get set back.

Thanks again and thank God for this forum.
Phil
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Postby Allen1 » Mon Feb 13, 2012 3:44 pm

Hi there Phil,

your brother and myself have some things in common to a degree especially the heart attack and the future triple bypass that he may require. My first post that I wrote here took several hours to write, apart from pain and exhaustion my thinking and typing ability was that of an imbecile more or less. This was down to Statins, I have been off them for just under 5 years now and some things improved but in general when one thing became tolerable, something new would take its place.

Here is my first post, I hope your brother reads it and gets off this poison before he finds himself heading the way both you and myself have. As I mentioned above, this took many hours to write and I would hate to see anyone else go through all those unnecessary tests and problems because of the statins.

All the best,
Allen.
http://www.spacedoc.com/board/viewtopic.php?p=5434&highlight=#5434
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Postby pmgamer18 » Mon Feb 13, 2012 3:57 pm

Thanks Allen,

I will send this to him when I know he is recovered. I don't want to upset him now. Get job.
Phil
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Re: Right now I can't walk.

Postby pmgamer18 » Tue Nov 12, 2013 11:30 am

Hi all it's been a long tme things are no worse but not any better. I was posting at a forum I am a member at and got a reply from a guy that said this.
============================================
Hey pmgamer,

bad to hear that story man.. have you considered idebenone instaid? personal i have had much more effect from in than the natural form.
i have take it 8 months, and it have made it possible to ride a bikecycle agian and he said he was in pain all the time now is back to work 30 hrs/ week.
------------------------------------------------------------
I had posted this.
======================================
I can't tell everyone how much this helped me.
After having heart Bypass Surgery and having it go bad because the Heart Surgeon took me off TRT and my sternum became infected. They had to open me up again and leave me open because they had me on blood thinners. They would get my blood right then fix the problem and close me back up. Then the same thing would happen so I ended up being put in a coma for 14 weeks. Until my Family Dr. heard I was in trouble and came to see me and seen I was off TRT.

He had it put in my chart not to do this he fixed this and to hold my sternum together the pulled my chest muscles across my chest and sowed them together.

After all this then I was put on Statin Drugs and in two yrs they crippled me I can't walk with out a walker and when I do I am on a lot of pain.

It's a long story but in this link you can read about how this happens due to Statin drugs lowering CoQ10 levels.

When I could not walk anymore Dr.'s listened to me and took me off Statin Drugs and put me on CoQ10 in the forum of Ubiqwuinol. I was put on 400 mgs 3x's / day I can't tell you how much this helped and it is still helping. Today I take 200 mgs 3x's / day.

Even if your not on Statin drugs taking this is a dam good idea for your body and heart.
http://articles.mercola.com/sites/ar...ign=20131103Z1
Don't believe anything you hear and only half of what you see.
Phil
----------------------------------------
My Question is this dose anyone know about this supplement Idebenone or has anyone tired it and found it worked here is a link and a cut and paste about what it is.
I see my heart Dr. this Fri. and don't want to waste his time with this if it's not worth it I have tried so many things I have given up trieing.
http://internaf.org/ataxia/Idebenone_desc.html
Thanks Phil
=====================================
IDEBENONE

WHAT IS IT?

Idebenone is an analogue of Coenzyme Q10.

WHAT DOES IT DO?

In most respects, Idebenone shares its traits with Coenzyme Q10. Like Coenzyme Q10 is might be useful for aging. It differs from it in some important ways, which may make it more useful. Under certain circumstances, Coenzyme Q10 (CoQ10) may become a pro-oxidant. These circumstances are conditions in which hypoxia or lack of oxygen occurs. In cases of shock, heart attack, stroke, or poor circulation, CoQ10 auto-oxidizes and unleashes massive amounts of various free radicals that damage delicate tissues and because CoQ10 is necessary for electron transport and ATP (chemical energy) production, cellular death may ensue. Idebenone, on the other hand, suppresses free radicals and continues ATP production in hypoxic situations. This may make it a useful supplement for individuals at risk for those conditions.

Other important traits of Idebenone not shared by CoQ10 include the ability to raise the brain's serotonin levels like the SSRI antidepressants (Prozac) and it also increases the brain levels of nerve growth factor. Another trait is to protect the myelin sheath from damage as well as the mitochondria that has important implications in Multiple Sclerosis.

The ability to enhance serotonin production occurs even under less than optimal conditions such as those whose diet contains little L-Tryptophan.

Naturally, nerve growth is a desired result in many conditions. In Alzheimer's Disease, for example, several studies show dose dependent improvements when compared to placebo as measured by different tests when taking Idebenone. An abstract said, "Treatment with idebenone was found effective on memory, attention, and orientation and in slowing down the natural progressive worsening of the disease."

The following conditions may benefit from Idebenone: Brain enhancement as a nootropic, stroke, Alzheimer's, dementia, surgical candidates, cardiovascular, MS, other demyelination conditions, aging, depression, Friedreich's Ataxia, and liver problems.

CAUTIONS

Few adverse reactions have been noted with this substance even at doses of 900 mg daily.

Another description:

Idebenone is an analog (variation) of Coenzyme Q10, a powerful anti-oxidant biochemical known also as "ubiquinone" and most commonly as CoQ10. This substance is the energy producing unit of our body cells. Every process in our bodies requires CoQ10. Without CoQ10 life stops.

Benefits of CoQ10 in autism are:
Supplies energy necessary for proper Immune Response
Strong antioxidant power to help prevent free radical damage
Provides energy for the natural detoxification process in the liver
Helps fight off Candida and bacterial and viral infections
Helps correct immunodeficiencies
Enhanced Focus
Mood Elevation
Desire to engage in more conversation
Idebenone supplies all of the same benefits as CoQ10 plus some distinct advantages based on its more complex chemical structure. Though very similar in chemical make-up to CoQ10, its longer chain organic structure gives it extra powerful anti-oxidant properties making it a more effective "free radical quencher" resulting in less cell and tissue damage.

Some leading doctors treating autism believe that Idebenone offers three very distinct advantages over CoQ10 in supplementing developmental disorders.

Studies show that Idebenone enhances brain structure and function
Its superior anti-oxidant properties protect body organs more efficiently
Offers protection against excitatory amino acid neurotoxicity from ingestion of these ingredients through the diet (Examples: MSG, artificial sweeteners, canned soups and meats, spices, etc.)
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