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Posted: Mon Sep 20, 2010 1:38 pm Post subject: Right now I can't walk.
My story is sad and long you can read it if you have the time at this link and the update about my Heart Bypass surgery.
[b]Gee after all this time I just now find out the link above was not working here is one that works.[/b]
Two yrs. ago I had Heart Bypass Surgery it went bad I was put into a coma for about 17 weeks. I was opened up about 5 times died 5 times.
When I came too I was so weak I could not press a button to call a Nurse. I had to lean how to think and walk all over again.
I was put on Statin Drugs even though I never had high levels of Chol. in my Life. I was told the blockage was very old and might have been caused from my low Hormones over the last 29 yrs.
I am Hypopituitary and need to add Testosterone, Cortisol, Thyroid, Iron, Aldosterone and Growth Hormone. My Pituitary dose not tell my body to make enough of them hormones.
So after all them yrs fighting to figure out way my health was so bad. I now have to fight to get my legs back.
About 2 yrs ago when I got out of the hosp. I was put on Stain drugs. I had problems from day one with joint and muscle pain.
Not one of my Dr.'s would take me off them until 8 weeks ago when the pain was making very hard for me to walk.
They took me off the cold and I went down hill fast to the point were 3 weeks ago I could not walk anymore. My Family Dr. gave me Darvocet for the pain I need one pill every 8 hrs so I can walk with a walker.
My Heart Dr. was not the Dr. that put me on the Statin Drugs it was the Dr. that did the surgery.
My Heart Dr. told me he feels my pain in my lower back going into my hips and down my upper legs is from the Statin Drugs.
He told me to get some Ubiquinol Featuring Kaneka's Qh I am on 3 100 mg. pill per day. With Lecithin 1200 mgs each pill 3 2x's a day.
I have been on this 2 week now and starting to get better. But it is very slow, today I started on some Acetyl-L Carnitine 500 mg I take it 30 min's before eating.
I have been helping men I am a Mod. on two forums one for low Testosterone and and one for men's Thyroid.
This is my story I am very worried about this and need all the help I can get.
Last edited by pmgamer18 on Mon Aug 15, 2011 10:56 am; edited 1 time in total
Posted: Sun Sep 26, 2010 12:10 pm Post subject: Should I try Physical Therapy?
I have been unable to walk with out a waker for 6 weeks now been on CoQ10 and
other supplements and doing just a little better. I have lower back,hip and
upper leg pain. When I have good days I can walk a short time with out a
walker. And when I try to do some leg exercising I get more pain.
Will Physical Therapy help when I seen my Family Dr. 4 weeks ago to offer me a
script for this I turned him down I don't feel my pain is a back problem.
Still will Therapy help is there anyone here that can help me.
Thank you so much this is what I was thinking yet my wife and family even my Heart Dr. tell me I need exercise. After heart surgery and being in a coma I never got my legs back. Now I know why it was them Statin Drugs they put me on.
My heart dr. did not put me on the statin drugs and he told me he feels it is my low CoQ10 levels that did this to my hips and legs. Yet he tells me if I don't get exercise I will lose my legs.
It was a week after I seen him I got so bad I could not walk. And I have been off them drugs 8 weeks now.
Do you know how long it takes to get CoQ10 levels back up I am taking 200 mgs 3x's a day.
Somewhere in an article by either Dr. Peter Langsjoen or his father Per, they report that patients in advanced congestive heart failure could not process ordinary (e.g., ubiquinone) CoQ10 to ubiquinol (the form needed) enough to be effective in recooperating heart muscle. To counter this they worked with Kaneka in Japan to develop a chemically stable form of ubiquinol that their patients could take and that was much more effective in raising their CoQ10 levels to therapudic levels. This may apply to you as well. Most major sellers of suppliments stock CoQ10 in ubiquinol form.
I will look for that article and either post link to it or revelant paragraphs.
I have been seeing nice, steady improvents in my most Lipitor-damaged muscles since I started taking Acetyl-L-Carnitine. This biochemical's roll is said to be twofold: 1) essential/important to get lipids from inside cell to inside of mitochondria, where they are used to produce the energy molecule ATP (adenosin trifosfat) and 2) to remove metabolic waste products and other toxic chemicals from mitochondria.
Here is relavent information from elsewhere on this site. Do search on Dr. Peter H. Langsjoen on www.spacedoc.net. There are several entries on Peter.
1.) Supplemental Ubiquinol in Patients with Advanced Congestive Heart Failure
Peter H. Langsjoen - East Texas Medical Center and Trinity Mother Francis Hospital, TX, USA
Alena M. Langsjoen - Coenzyme Q10 Laboratory, Inc., Tyler, TX, USA
Patients with moderately advanced (New York Heart Association class IV) congestive heart failure (CHF), often fail to achieve adequate plasma CoQ10 levels on supplemental ubiquinone at dosages up to 900 mg/day.
These patients often have plasma total CoQ10 levels of less than 2.5 μg/ml and have limited clinical improvement. It is postulated that the intestinal edema in these critically ill patients may impair CoQ10 absorption.
We identified seven patients with advanced CHF (mean ejection fraction (EF) of 22%) with sub-therapeutic plasma CoQ10 levels with mean level of 1.6 μg/ml on an average dose of 450 mg of ubiquinone daily (150-600 mg/day).
All seven of these patients were changed to an average of 580 mg/day of ubiquinol (450-900 mg/day) with follow-up plasma CoQ10 levels, clinical status, and EF measurements by echocardiography.
Mean plasma CoQ10 levels increased from 1.6 μg/ml (0.9-2.0 μg/ml) up to 6.5 μg/ml (2.6-9.3 μg/ml).
Mean EF improved from 22% (10-35%) up to 39% (10-60%) and clinical improvement has been remarkable with NYHA class improving from a mean of IV to a mean of II (I to III).
Ubiquinol has dramatically improved absorption in patients with severe heart failure and the improvement in plasma CoQ10 levels is correlated with both clinical improvement and improvement in measurement of left ventricular function.
Enjoy! And look for more here on this site, including on L-caritine.
I am on Ubiquinol Featuring Kaneka's Qh 200 mgs 3x's a day with meals. And doing Acetyl-L-Carnitine 500 mgs 30 min's before eating 3x's a day. Also my Heart Dr. has me on Lecithin 1200 mgs I take 3 two x's a day.
Today was a very good day I went out to get my teeth cleaned then out for lunch. I used the waker but felt like I did not need it. Now I am home and very tired. Still it looks like I am getting better.
A friend of mine from the web is a Dr.'s assistant and called my yesterday he was at the office doing paper work with the Dr. they both told me it can take up to six months for my body to come back to normal.
I hear times like 6 months, one year, even more to fully recover from statin muscle and ligament damage. This is from folks that have recovered.
After 2 months on same ubiquinol gel caps as you, I increased dosage from 2 to 3 times a day and saw nice increase in performance in work outs and noticable decrease in pain and weakness in left arm.
More recently I have gone to Acetyl-L-Carnitine 500 mg 3 or 4 times daily. Now I am seeing some real decreases in muscle pain and weakness in left arm. I am also seeing nice increases in weights I can handle easily, including with left arm, say from 150 to 175 lbs, 75 to 100 lbs, etc. I am becoming a believer in this suppliment!
Hope your progress is and will continue going same path as mine.
I went in for labs today checking CK and CPK and other things. I do labs every 6 weeks because I am on Hormones like Testosterone.
I asked the Dr. about going to Physical Therapy he said no it can do more damage. He told me to exercise by trying to walk more and doing some leg moves.
He seen the walker I was using and gave me a script for one that has wheels, brakes, seat and a basket for holding things in. I got it it's great I never thought I would be so happy about a new walker. But now I can stand in the shower and sit on the walker to shave.
I go back in two weeks my Dr. said we will see how I am doing and talk about Physical Therapy.
I feel it's getting better and have been told by others that it can take 6 months. I feel good in the morning but by bed time I am in a lot of pain trying to walk or stand up.
I am on Pain pills and will start to cut back on them breaking them in half and try to come off them.
Joined: 03 Sep 2009 Posts: 119 Location: Snoqualmie, Washington
Posted: Mon Oct 04, 2010 11:44 pm Post subject: Physical therapy...
Hi, I have been on this great site for about 14 months now...glad you found us!
You can read my story on "New Member"'s thread that is current...so I won't post it again. You can also look me up and get my other posts, I think.
I have been a physical therapist for forty years. When I developed the neuropathy, pain and extreme fatigue last year, I had been in great shape, and I was totally dismayed. I did attempt to keep up with the deep water aerobics I had loved doing, but was unable due to fatigue and pain. I would get in the water, the pain would start or the fatigue and I would get back out. I could not get my heart in to the aeorbic range within 3 weeks of the onset of the neuropathy. (And I had been in such great shape that my resting heart rate was like 52.)
I am very aware that each one of us is different, so what I am sharing is my own experience...but when you add up all the stories here, I know you will get the picture. Some people recover to resume their earlier activities and some do not. I gave up the water aerobics, the walking and hiking for the better part of a year. Two weeks ago, since I was no longer having pain, only muscle fatigue, I very warily returned to the pool, telling myself I would stop if I had pain or fatigue. I am not even attempting to get into the aerobic range. At the moment, I am just building time in the water, exercising gently and then stretching out afterwards, before leaving the pool. To my delight, I began with ten minutes of exercise tolerance, and as of today, I can tolerate 30 minutes without pain or fatigue. I am very cautiously hopeful, and will deep it up, but will be very vigilant. I am on double the dose of the Neurochondria supplement, which seems to be helping the fatigue.
My muscles are pretty seriously atrophied, so I am also making sure that I am getting a well balanced diet with good sources of protein.
I am just so grateful that the pain is mostly gone that I am willing to be very patient and careful about resuming exercise.
As a therapist myself, I have learned a lot about the effects of statins...and, if I had a patient come to me, I would be very careful...before a year ago, I would have had no idea about the extent that statins can cause neuromuscular damage...and I can tell you that within the body of current articles in PT journals, I haven't seen much on statin damage.
My best advice is to use this site as a jumping off point for educating yourself. You will quickly find that you may know more than many docs or medical professionals.
Oh, and by the way, I went through the entire "vascular" diagnosis process with my leg pain...and my vessels were okay. A couple of varicosities, but nothing to explain the neuropathy.
You will read many stories of people on this site who were in great shape when they began to have statin problems...it is a seriously under-recognized problem.
Take care, go slowly and carefully with your rehab...listen to your body!
Thanks Nancy the supplement your on Neurochondria has all the things in it I am on by my heart Dr. Both my Heart Dr. and Family Dr. told me not to exercise as long as I am in pain.
Right now I am on pain pills every 8 hrs 3 days ago I cut the pills in half. I am OK in the morning but by dinner time the pain is bad.
Thank you for posting to me you gave me some more info about this. So they call what we have
neuropathy. So would meds for fibromyalgia help us like lyrica. My Brother in law as neuropathy in his feel from high sugar his Dr.'s have him on this. I wonder if this would work better then being on pain meds.
I am getting better but it is very slow I can now stand to take a show and go out just got back from getting a hair cut. Yet I can't drive.
I will read your story and your posts I don't have a lot of time I am a mod at Yahoo's group for men with low Testosterone and this keeps me very busy.
I am very worried about this I did some labs last Tue and we checked CK and CPK levels with CoQ10. I pray I don't have damage.
I am glad to learn from a PT that few PTs know much if anything about statin-caused muscle and nerve problems. I have not yet found any indication that a PT would be useful. THANKS!!
I am also someone that used to be in excellent physical condition and greatly enjoyed endurance activities, such as long mountain hikes, many-hours-long cross country ski trips (also in mountains), etc. Now that I am off Lipitor for 4+ months, I have hopes of being able to ski more than 2,0 hours this coming ski season (with 1/2 of that being rests!!). Last season I skiied like a half-dead old man -- which I really was.
My experience with medical professionals, even cardiologists, is as you describe below.
QUOTQ: "My best advice is to use this site as a jumping off point for educating yourself. You will quickly find that you may know more than many docs or medical professionals."
If you have not already, visit *www.statineffects.com, Dr. Bertrice Golumb's site re NIH-funded San Diego Statin Effects Study. Also highly recommend *www.thincs.org, Dr. Uffe Ravenskov's site. Study information available on these two, plus this site, and you can be a real threat to the average cardiologist's sence of superior knowledge abouit statin-nasties.
I went through entire "vascular" examination yesterday morning on both legs, from crouch to toe (literally!!). Although it will be a week or two before I get the QCed and officially interpreted results. It looks like everything is more-or-less OK, maybe even better. SO, looks like I should have made a bet with cardiologist!! Expect to see same conclusion as you.
QUOTE:"Oh, and by the way, I went through the entire "vascular" diagnosis process with my leg pain...and my vessels were okay. A couple of varicosities, but nothing to explain the neuropathy."
Next scheduled cardio-related test for me if full up treadmill stress test to access any potential/possible damage to me heart muscles from Lipitor. I was having symptoms last cross country ski season that I and cardiologist now think could be early warning of congestive heart failure. Cause would be Lipitor's drastic lowering of my bodie's production of CoQ10, perhaps to 50% or less of what it should have been. At moment, I feel much less confident of expected outcome. My treadmill performace is still well below what I would like -- nothing like it was pre-Lipitor.
I like to think that my poor performing heart past ski season was purely because of low CoQ10, caused by Lipitor. My cardiologist gets "scared look" when I push for Lipitor damage, even if gone now.
HOWEVER, tempering my optimism, I still do not have full function return of left arm, especially fine muscle control (bummer that!! -- took two important abilities outta my life!!) and now it looks likely that I have a right leg with residual, Lipitor-caused muscle problems.
Hope I can soon claim a bit of post-graduate on the job training to my cardiologist. Maybe I can even get him to read published reports from San Diego Statin Effects Study.
I still have a lot to learn about this I am a mod. at a Thyroid and a Low Testosterone "Hypogonadism" fourms. This takes up about 6 hrs of my day. If you did a Google search on my nick (pmgamer18) you can get over 13,000 hits.
So but the time I get to read up on this Statin problem I am very tired. I have slow days but not latey.
Today I feel off very weak in my legs and sick to my stomach. I don't know If I eat something that did not agree with me. Or it's the supplements I am taking of this statin problem.
I pray we all get over this or someone figures out how to treat this and fix it.
Joined: 03 Sep 2009 Posts: 119 Location: Snoqualmie, Washington
Posted: Wed Oct 13, 2010 9:49 am Post subject: Thoughts on recovery
Having the reason for your weakness confirmed by the doctors is a victory of sorts. You can read all over this site how many physicians just can't wrap their heads around the possiblity that statins could cause all the problems it does. I changed doctors because my other primary just couldn't believe it, despite all the testing that said my problems were not related to all the things she was sure they did.
So, what to do. I can affirm again what others have told me. Go slowly. Figure out what is helping you and stick with it. Adjust doses of supplements or add or subtract supplements one at a time so you can see what effect the change has. And while you are at it, change one thing at a time in your exercises or activities, so you can figure out what changing that particular thing does or doesn't do for you.
Listen to your body. If I go do water aerobics first thing in the morning, I work until I either get fatigue or pain and then stop, gently stretch and get out. I am not trying to break world records in the pool, nor am I yet able to actually make my work-out aerobic. Yesterday, I needed to vacuum the house, which was exercise enough. Today I have to do yard work. No pool either day.
As a PT, I would have to say, concerning my own recovery...most of what I know about exercise physiology is written for folks whose neuromuscular systems work normally, beginning at a cellular level. If statins have damaged the physiology of neuromuscular function, beginning at the sub-nuclear level of the mitochondria, then how to procede with therapy is basically an experiment.
Before statins, I could push my exercise regimen with predictable results. Working at an aerobic pace, my muscles would strengthen predictably, my lungs would respond, and my heart would strengthen and the heart rate would go down. At the point of the statin crisis, I was in great shape, my resting heart rate had gone down to 50.
Now, I am wary. If I do "too much," and I am not always sure of what is "too much," I may pay with a return of the neuropathic pain, or I have more than the old amount of muscle soreness, and also, now I am also experiencing tendon pain, especially near the attachments to the bones. I also wonder about changes in the ligaments, as I have, at times, felt as if I have tweaked a joint, with resulting swelling in the joint.
None of this matches other diagnoses that I have worked with in over 40 years. I have a sister who has had chronic fatigue syndrome for nearly twenty years. There are many similarities, but I believe there are differences, too.
So, go patiently and deliberately forward, learning what works for you. Learn all you can about statin damage. You will teach your doctors!
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