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  1. #1
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    Default McArdles Disease

    Hi everyone, new guy here. Forgive me if this post is in the wrong place, I have been looking around and figured this was a pretty good spot for it. Also forgive me if this post runs a little long.

    First off, there seems to be a lot of good information on this site. That is why I came here to post a question for everyone as there seem to be smart, knowledgeable members here that could help me out with my situation.

    I used to lift from the age of 12 until 24 and then I got married and kids started and it slowed me down some. I was always in shape and loved the gym. Then one day when I was 28, I got injured at work and went into renal failure. After many test and a biopsy, it was learned I have a rare disease called "McArdle's Disease".

    http://mcardlesdisease.org/

    McArdle’s Disease is a rare metabolic disease affecting skeletal muscle. It is also known as Type V glycogen storage disease.

    For three years while trying to diagnose me, I was to lift no more than a fork. Long story short, I am now 46 and a fat ass. Over the past two years, after being pretty much completely dormant, I started walking and lifting light weight again. I have to go slow because if I push myself I will get crazy sore and send myself into renal failure again. I seem to go home sore a lot these days.

    So I guess my question is, is there anyone here that is familiar with my disease or willing to read up on it to help me get back to a healthier me with some guidance? I have talked to many people in my area but none know anything about it. I would love to find someone who also has this issue and learned how to deal with it and is able keep a good body. I don't seem to making any gains.

    Thanks for any info.

  2. #2
    Managing Dir., Rx Muscle Forums Curt James's Avatar
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    I've never heard of that disease. Great post, but I certainly wouldn't wish McCardle's on anyone.

    Looking at that link you provided...

    McArdle’s disease is a rare muscle disease affecting approximately 1 in 100,000 people. Because their muscles cannot properly metabolize energy, individuals with McArdle’s disease may experience fatigue and failure during strenuous activities like jogging, swimming or even walking. These episodes can result in painful cramping injuries that require medical attention. McArdle’s disease is an inherited condition, and is caused by a missing or non-functioning enzyme needed to make glucose for energy.

    There's also this:

    A “second wind” phenomenon has been clinically observed in which people with McArdle’s disease are able to maintain moderate physical activity such as jogging or walking after a warm-up period, assuming they do not experience hypoglycemia. This warm-up may also reduce the risk of injury to the affected muscle groups through increased circulation, heart rate, and hormonal factors.

    People with McArdle’s disease who are middle-aged or older may be at increased risk for injury, but it is not clear whether this is simply the natural result of decreased activity and aging, or if it is indeed specific to McArdle’s disease. There are mixed reports about the progression of McArdle’s disease symptoms through adulthood, and the medical community would benefit from more clinical studies on the effects of McArdle’s disease throughout the life span.

    One thing that is certain is that individuals with McArdle’s disease for the most part seem very able to live active and healthy lives, and continue participate in all kinds of physical activities.

    I love Google and tried search string McCardle's and bodybuilding.

    Found a thread that included a man also with this condition:

    For those of you who don't know the disease and want to help, this is what I know of it;

    1. There is this thing called the "second wind" symptom, which means that for the first 8-10 minutes of exercise, I am more injury prone because this is the period where muscles try to use the glycogen stores. After these 8-10 minutes, the muscles begin to use fuels delivered from the bloodstream instead of the glycogen in the muscle, which makes it easier to exercise and makes me less injury prone.

    2. If my ATP reservoir is depleted, it's bad. Once the ATP is gone, my body will actually start breaking down the proteins in my muscles to use as fuel instead, which releases toxins into the bloodstream which can be very dangerous. Most people can replenish their ATP both anaerobically and aerobically, but this disease only allows me to replenish my ATP aerobically.

    3. There is something called the 6 second rule which is essentially this: while doing something incredibly strenuous (AKA lifting heavy weights) the energy stored in your muscles will be depleted completely after about 10 seconds. So the 6 second rule states that if you have to do something strenuous (they mostly recommend not to do anything strenuous at all), you count out 6 seconds, stop whatever you are doing, and rest for a bit. Studies have shown that your ATP recovers in about 3 minutes so this would probably be the backbone of any routine; 6-ish seconds of lifting followed by 3-ish minutes of rest until i lift again.

    4. Isometric exercises are bad because they interrupt the bloodflow while the muscle is contracted.

    5. Flexibility is a huge boon when dealing with this disease, as is aerobic exercise (since blood flow is my only method of restoring ATP to the muscles). They recommend 45 minutes of aerobic exercise at least 5 times a week, which is actually something I've avoided in the past because my goals were to increase strength and muscle size.

    6. Sugar before a workout will help maximize the amount of energy that can be sent to my muscles via my bloodstream. B6 has also been shown to help reduce muscle fatigue. Other supplements I'm very wary of because I'm not sure how they would react with the disease, including but not limited to creatine and L-glutamine.

    7. A normal bulk and cut would probably not be the greatest idea because the larger the ratio is between the amount of fat on my body vs the amount of muscle puts more strain on those muscles which could be bad.

    And that's really all I know. Like I said, I'm not even sure if Hypertrophy or Strength Gains are possible with this disease, and if they are, a program of 6 seconds sets followed by 3 minutes of rest would probably be the way to go, but I just wanted to see if there was anyone else who had knowledge of the disease and could offer some guidance.

    From https://forum.bodybuilding.com/showt...hp?t=155379983

    There's nothing much there, really, but maybe you can send a friend request to that member. That thread is from July 2013. Perhaps he's compiled some good information he'd be willing to share.

    What kind of referral can you get from your family doctor? There has to be a specialist out there somewhere. :-/ Best of luck!

  3. #3
    OLYMPIAN doubleogordo's Avatar
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    Can also caused by eating McDonalds

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    Have you looked into going on strict ketogenic diet?
    Doing searches in PubMed may prove useful.

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    Hey thank you for taking time to search this for me, I will see what I can do with that info.

    Unfortunately there is no cure and nothing can be done for relief. I mean I guess when there is a flare up one could take pain medication but I choose not to. Medical Marijuana would help for pain but I work in a field that does not allow that.

    As for diet, the internet is a great tool and yet a curse. Seems like there are opinions on everything from keto to atkins to carb diets.. There are forums for people with McArdles but most people on there are people who do well to walk from their house to the car. Not many people who actively lift or do cardio.

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