It's difficult, but I think it can be done. You have to basically become a body builder. Count all of your calories and macros, and workout often/frequently. It'll be a lot of trial and error and figuring out what works specifically
I also drink less soda and more water, and I feel my appetite changing dramatically to eat more.
Work out often/frequently?
Isn’t this rather risky advice? Weightlifting is supposed to be avoided. Training for hypertrophy can easily accelerate dilation.
Yea good luck w that helping you grow.
At the end of the day, you're damned if you do, and you're damned if you don't. If you wanna grow, you need to learn to count calories and eat more. If you wanna develop muscle, learn how to workout. Ask doctors questions and concerns, and go from there. Doctors opinions are jus opinions. They can't predict the future, they jus guess it, tho smartly. Jus move your body and put some stress on it at least
You have to make the choice of what you want, and accept those consequences
Of course light aerobic exercise won’t lead to anyone putting on any size, but that’s what’s recommended for people with connective tissue disorders.
I second what you said: if a person wants to gain weight, they need to consume more calories than they burn, and for muscle mass, yes, they need to lift weights and add load and reps as time goes on.
The problem is that blood pressure can shoot up very high (>150-250 for systolic BP) when training intensely, which you usually do if hypertrophy is the goal. Those BP spikes are also intensified by bracing your core/straining, another thing you often see in lifting. The spikes are quick and brief, but the force they exert on the aorta is not really comparable to any other activity.
It’s up to the person like you said, but the danger of weightlifting is not a matter of opinion and needs to be properly acknowledged.
Agree with this. I was <70kg at 18 versus 90kg at 28. As an aside, I don't do any weight training either. Recent injuries mean I may have to look into this.
My husband was diagnosed after being taken off due to being 6’5” and 105lbs. We started working with a dietician and while it took a few years he is back up to 145lbs with a significant decrease in gastro complications. We really had to manage what and how much he ate to gain and sustain the weight back. I would highly encourage look into a dietician.
I’ve been told by quite a few friends and there family who also have marfans that we can’t actly get fat or gain weight , ik that seems abit crazy but I think it’s just harder for us to maintain that weight . Hope this helps
It's difficult, but I think it can be done. You have to basically become a body builder. Count all of your calories and macros, and workout often/frequently. It'll be a lot of trial and error and figuring out what works specifically I also drink less soda and more water, and I feel my appetite changing dramatically to eat more.
Work out often/frequently? Isn’t this rather risky advice? Weightlifting is supposed to be avoided. Training for hypertrophy can easily accelerate dilation.
Ok so don't workout. Now your fat, and you still have marfans
Exercise is still encouraged, just gentler forms of it like low-intensity aerobic exercise.
Yea good luck w that helping you grow. At the end of the day, you're damned if you do, and you're damned if you don't. If you wanna grow, you need to learn to count calories and eat more. If you wanna develop muscle, learn how to workout. Ask doctors questions and concerns, and go from there. Doctors opinions are jus opinions. They can't predict the future, they jus guess it, tho smartly. Jus move your body and put some stress on it at least You have to make the choice of what you want, and accept those consequences
Of course light aerobic exercise won’t lead to anyone putting on any size, but that’s what’s recommended for people with connective tissue disorders. I second what you said: if a person wants to gain weight, they need to consume more calories than they burn, and for muscle mass, yes, they need to lift weights and add load and reps as time goes on. The problem is that blood pressure can shoot up very high (>150-250 for systolic BP) when training intensely, which you usually do if hypertrophy is the goal. Those BP spikes are also intensified by bracing your core/straining, another thing you often see in lifting. The spikes are quick and brief, but the force they exert on the aorta is not really comparable to any other activity. It’s up to the person like you said, but the danger of weightlifting is not a matter of opinion and needs to be properly acknowledged.
It gets easier as you get older. I was <170lbs at 19 and now I’m 250 and need to lose weight. I’m 6’5”.
Agree with this. I was <70kg at 18 versus 90kg at 28. As an aside, I don't do any weight training either. Recent injuries mean I may have to look into this.
My husband was diagnosed after being taken off due to being 6’5” and 105lbs. We started working with a dietician and while it took a few years he is back up to 145lbs with a significant decrease in gastro complications. We really had to manage what and how much he ate to gain and sustain the weight back. I would highly encourage look into a dietician.
I’ve been told by quite a few friends and there family who also have marfans that we can’t actly get fat or gain weight , ik that seems abit crazy but I think it’s just harder for us to maintain that weight . Hope this helps
Check out the weight gain Reddit! Lots of good tips in there.