Hi guys,
I came here via this old thread: Mitochondrial Myopathy and resistance training
I also have a congenital muscle disease. Differentials are either a very untypical non-dystrophic myotonia or mito. Previous lab and exercise tests mostly seem to point towards a milder form of mito though.
I’m 51, afab, and still don’t have an absolute diagnosis thanks to moving internationally too often, and lots of burying head in the sand periods. I am able to exercise though, and I do on and off for 25 years, including about 10 years of trying to run. Main symptoms are muscle stiffness and burning pain when repeating movements, generally just a feeling that gravity is a lot higher for me than for others. I have very hypertrophic lower legs, and gain muscle quickly overall.
My body is a bit weird. Exercise tests show my heartrate when running must be waaaay above the point only glycogen is used, and likely around or above the anaerobic threshold. And so I duly hit the wall after 43 minutes. Unless it’s one of those rare moments where my muscles feel miserable as always, yet I keep on going without bonking and the only thing that makes me stop is pain in my feet from putting them flat down and not rolling them off because too tight muscles. I really wish there was a way to figure out what substrate my body uses then. I tentatively think lactate as I have some very odd lactate anomalies, both high and low depending on how I exercise.
My lactate clearance seems to be pretty good anyway, and my body seems to recover quickly. My strength routine currently is 5x5 each bench, squat, row, deadlift or romanian, overhead press and biceps curl (lost a biceps tendon in an accident). I am not able to lift heavier or progress faster when only doing 3 exercises, thus I might as well pack everything into one. I can’t get full on heavy anyway due to a somewhat improvised bedroom setup and being so prone to accidents that I don’t get through a week without a minor catastrophe, while living alone. Actually, this is my secret super power, because if I do bodyweight, I also don’t manage more than 5-6 reps. My muscle problem is clearly not one of strength or stamina, but of repeated contractions, followed by super fast recovery. What annoys me, is that I’m apparently training for hypertrophy, not so much for strength. Maybe I need to reduce the volume further. On the other hand I enjoy doing this, and training exactly this way also benefits my energy levels in everyday life, and it makes running a bit easier.
Anyway, waiting for an appointment in genetics in a local university hospital. And then back to neuromuscular specialist to discuss how to go on.
