Breathing during excerise

emmayes wrote: @Matt: resting does not prevent my muscles getting weak. So using them less at night doesn’t prevent any weakness during the day. I do not have apnea, so it wouldn’t do me any good.

If you have elevated CO2 due to muscle weakness, it's almost definitely because you are retaining CO2 while sleeping - which means your body cannot ventilate properly while asleep. It's incredibly rare to have an elevated CO2 during the day and a normal CO2 level at night. Your muscles are at the most disadvantage while sleeping. The work/cost of breathing is very high and there is a lot of accessory muscle usage. Have you done an in-lab sleep study where they monitored oxygen saturation and carbon dioxide levels?

The Bi-level machine is not a cure, but it does slow the rate of muscle weakness progression. Survival rates and quality of life are greatly increased by using said machines. It also resets the chemoreptors in your brain and the drive for your body to maintain healthy levels of blood gasses.

Why not give it a trial? See if it makes you feel better - there is nothing to lose.

I'm not trying to argue with you in any way, so this is the last I will say regarding this; I just genuinely fear that you are being mismanaged by your physician.

emmayes wrote: Is there anyone using BiPap (or cpap) during activity? Or tried it?
I just cannot imagine it being comfortable. I mean, when you walk or otherwise being active, you breath differently, and with less continue rhythm. Will a bipap be able to help?
I am scared it would only harm me.

People do use a bi-level machine while exercising but I've only seen it done in the home setting and also at pulmonary/cardiac rehabilitation centers. Some people's exercise capacity improves with the addition of pressure support because it assists with ventilation (increases tidal volume for one) and allows for deeper breaths. With a bi-level in most modes such as spontaneous and spontaneous/timed,you control the machine - it does not control you. Usually after a few minutes you develop a breathing pattern. The bi-level device can only help; it can only assist with ventilation. CPAP would be useless.

@Matt, I understand. I did have multiple sleep studies, all came out fine.
I don’t have elevated CO2 during the day by the way! Well, I probably sometimes do but since my muscle weakness is very fluctuating it balances out nicely.
My breathing muscles are really much better when I’m asleep.

My physician, luckily, is great. I have a complex medical case, so I do understand it isn’t easy. That’s why I want to have a big say in what treatment I try.

People do use a bi-level machine while exercising but I've only seen it done in the home setting and also at pulmonary/cardiac rehabilitation centers. Some people's exercise capacity improves with the addition of pressure support because it assists with ventilation (increases tidal volume for one) and allows for deeper breaths. With a bi-level in most modes such as spontaneous and spontaneous/timed,you control the machine - it does not control you. Usually after a few minutes you develop a breathing pattern. The bi-level device can only help; it can only assist with ventilation. CPAP would be useless.

Interesting! So trying won’t harm me.