My wife was diagnosed with McArdles disease a few years back. A glycogen storing disease. We started riding not long after she was diagnosed. Her motto is:"If you don't use it, you lose it". when we ride, after about 2-3 miles she feels like her muscles are like very tight rubber bands.
We then have to stop or ride very slowly for about 5 minutes then she is ready to go! From what I gather, she has to let her body switch over to fat metabolism?. Is there anyone who either has the same diagnosis or has any tips to help with the dreaded 2-3 mile muscle brick wall?
Just a quick note...after she stops for 5 minutes and then gets back on the bike, she can go and go and go with no problem! The 5 minute stops are a bother to her during club or charity rides.
Interesting, I would suggest a 2/3mile warm up before starting out on her main cycle. Howerver she could also take a very high in glucose drink that will enable her body access to the glucose immediatly, when she starts to tire should should simply be able to slow down for a while.
What sort of level of cycling activity does she partake in?
The reason I ask is that anaerobic activity in a McArdles patient which leads to severe fixed contractures and myoglobinuria from muscle breakdown can lead to acute renal failure.
Carrerahill, you are correct about the renal failure. before she was diagnosed she went into renal failure after jumping on a trampoline for 5 minutes. She never thaught that she would be able to cycle 25miles up to 60 miles. Our cycling just started out on short rides around the block a few times. Then in a short time we were doing 10 miles 2-3 times a week. Then we started doing charity rides 25 miles being the shortest and 60 the longest.(Hybrid bike)
Now we are doing 25 miles twice a week and 10 to 15 miles the other days. she now has a road bike and is like a little kid!lol! She has met a few poeple with the disease and they were very inactive. Cycling has given her more confidence about her physical limitations. Now if I could just get her to cut down on the coffee!😄
My wife was diagnosed with McArdles disease a few years back. A glycogen storing disease. We started riding not long after she was diagnosed. Her motto is:"If you don't use it, you lose it". when we ride, after about 2-3 miles she feels like her muscles are like very tight rubber bands.
We then have to stop or ride very slowly for about 5 minutes then she is ready to go! From what I gather, she has to let her body switch over to fat metabolism?. Is there anyone who either has the same diagnosis or has any tips to help with the dreaded 2-3 mile muscle brick wall?
Just a quick note...after she stops for 5 minutes and then gets back on the bike, she can go and go and go with no problem! The 5 minute stops are a bother to her during club or charity rides.
I have McArdles disease and what your wife is experiencing is call the second wind phenomenon, and I'm afraid there's no way around it for someone with McArdles disease, but the fitter you are your body becomes more efficent in the using the second wind phenomenon, what your wife is experiencing is similar to the bonk before the second wind kicks in. www.phosphorylase.wordpress.com
I also suffer from McArdle’s, and what your wife is experiencing is called the second wind phenomenon, the fitter you are the more efficient your body becomes in kicking into it, some people have to stop when the muscle tightness and pain starts whereas some just have to slow down for the second wind to start, once it starts most sufferers can go on what seems forever, I love walking and cycling, I find it hard to keep up with my wife when going out for a walk but when the second wind kicks in she finds it hard to keep up with me. I love cycling also but I go at a leisurely pace knowing my limitations. Prior to the start of exercising it is recommended by some authorities to consume an energy drink. If you suffer from myoglobinuria (dark brown urine) make sure you drink plenty of water to flush your kidney's out.
Mcardles....Thank you for responding! When were you diagnosed with McArdles? When my wife and I went to Miami for her muscle biopsy, the doctors had a pretty good Idea that it was Mcardles from what she was describing to them. They were explaining that any rigorous excersize can throw her into renal failure. The way they described it made us think that she would lead a fairly sedintary life(walking to the mailbox,to the car,etc..). She was discouraged after talking with the doctors and after meeting a few people with the disease. The cycling lifestyle has changed her life! She has a much more positive outlook on life and has more confidence in her abilities physically. I do have a question for ya...are you on a special diet? She was on Adkins for a while but soon fell victim to the carbs!😄 I do notice that if she gains a few extra pounds, it affects her significantly!! Right now she is a little over(10lbs) her ideal weight for her height, but looks fit and in good shape!
Mcardles, just read your personal story! Thanks for sharing! So you were basically on the Adkins diet? Her diet is fairly healthy but I do worry about her fluid intake! She is a huge coffee drinker!!:eek: Is that a bad thing for her?
Mcardles....Thank you for responding! When were you diagnosed with McArdles? When my wife and I went to Miami for her muscle biopsy, the doctors had a pretty good Idea that it was Mcardles from what she was describing to them. They were explaining that any rigorous excersize can throw her into renal failure. The way they described it made us think that she would lead a fairly sedintary life(walking to the mailbox,to the car,etc..). She was discouraged after talking with the doctors and after meeting a few people with the disease. The cycling lifestyle has changed her life! She has a much more positive outlook on life and has more confidence in her abilities physically. I do have a question for ya...are you on a special diet? She was on Adkins for a while but soon fell victim to the carbs!😄 I do notice that if she gains a few extra pounds, it affects her significantly!! Right now she is a little over(10lbs) her ideal weight for her height, but looks fit and in good shape! Waiting for the second wind!!😉
I was diagnosed in 1991 but I had been running back to and fro to the doctors as long as I can remember with muscle pain and stiffness and even with a few bouts of myoglobinuria which they couldn’t get to the bottom of until they found out that my CK was sky high. I think that remaining positive about McArdle’s is half the battle and the other half is knowing your limitations so that you don’t cause damage to your muscle’s. Being overweight is a handicap to people with McArdle’s because if you think about carrying dumbbell weights with you all day long that would give you some perspective, that is why Lance Armstrong and Bradley Wiggins and other cyclists have shed any weight that they don’t need so that they can climb the mountains, extra weight slows you down and tires you out, though getting rid of spare weight is easier said than done. I’m not on a special diet but I try to eat food that burns through my system slowly such as pasta and rice dishes (basmati rice) and lean sources of protein such as fish and chicken. I also take a B6 supplement because the missing enzyme muscle phosphorylase is a carrier for B6. Another big problem for people with McArdle’s disease is dehydration, so it is of the utmost importance to avoid anything that causes dehydration, I went through a phase when I was sweating a lot and started to suffer many bouts of myoglobinuria during one hot British summer a few years back and my neurologist explained to me that it was the dehydration that was causing it. So keeping hydrated with an electrolyte drink may help if you think you are dehydrated but you need to mind the calories in the glucose drinks. On the Livestrong website there is a very good diet section called “Calorie Tracker” and “Daily Plate” Anaerobic activity is a muscle killer and causes the damage but aerobic activity is great for the muscles, within your limitations of course. Hope this of some help.
My wife was diagnosed with McArdles disease a few years back. A glycogen storing disease. We started riding not long after she was diagnosed. Her motto is:"If you don't use it, you lose it". when we ride, after about 2-3 miles she feels like her muscles are like very tight rubber bands.
We then have to stop or ride very slowly for about 5 minutes then she is ready to go! From what I gather, she has to let her body switch over to fat metabolism?. Is there anyone who either has the same diagnosis or has any tips to help with the dreaded 2-3 mile muscle brick wall?
Just a quick note...after she stops for 5 minutes and then gets back on the bike, she can go and go and go with no problem! The 5 minute stops are a bother to her during club or charity rides.
Kudos to your wife for pursuing fitness despite the illness. It will only help her. I'm pretty convinced that exercise improves almost everything that ails us.
Denny,Thanks...oddly enough, she says she feels better after a good ride! As long as she doesn't push herself too hard, she feels like cycling is a huge benefit! I am on a Hybrid bike and she is on a road bike and she has to wait for me most of the time! lol! Like McArdles said...once she gets her second wind, she is off to the races!!! I always start faster but she always finnishes faster.
I also have McArdles and am a very keen cyclist. Two days ago I completed an 87 mile cycle event in 5hours 30mins. I could have done another one the next day easily. For me it is one of the best forms of exercise for people with this condition. No getting away from that early pain though. I find it can take me 10 miles before I've really warmed up. After that it's fine...apart from the hills...though the more I do the easier they get. I fully understand your wife's enthusiasm for cycling. It's great when you find a sport that you can actually do with this condition. I believe the only way to stay on top of McArdles is to do very regular aerobic exercise...every day for at least an hour.
Glad your wife has discovered that as well. If she has any tips for getting up those steep hills...please let me know:-)
secondwind, thanks for the post! Are you on any special diet to help with the disease? What are your favorite pre and post ride meals? What have you found that helps you as far as warm up and cool down goes?
secondwind, thanks for the post! Are you on any special diet to help with the disease? What are your favorite pre and post ride meals? What have you found that helps you as far as warm up and cool down goes?
No, not on any special diet. I just try and keep to a reasonably healthy diet. The main thing I find is to not over eat. If I do then I feel sluggish and it can be quite dificult to get a good second wind. I used to eat quite a high protein diet as that was the recommended diet for those with McArdles but this has been pretty much discredited now. What I eat pre-ride depends on the time of day. If I'm out early in the morning I eat nothing. The second wind comes much quicker for me in the morning on an empty stomach. On a big ride I take a high glucose drink with me and drink it throughout the ride especially coming up to hills. It seems to help. I also munch on a few energy bars. Following a big ride I take a protein shake as it's supposed to help muscle recovery. I also crave salty food which means I should probably be taking more salts during the ride. I don't do any warm up as I take the first few miles very easy anyway. For cool down I always try and keep my legs moving for a while...walking stretching etc. Helps prevent the cramps which are not specificly McArdles related.
Hope this helps...any more questions I'm glad to help.
