My lactate levels are always high, too. It helps to use buffers so I drink a water with baking soda and take Acetyl-L-Carnitine and L-Histidine.

Studies have documented elevated lactate in myotonic muscular dystrophy, but I don't think I've seen any on myotonia congenita. However it is likely some of the same cause and effect. Here is one study that mentions it in MMD:

CoQ10 and Lactate Levels in Myotonic Dystrophy

We seem to have more stiffness in the fast twitch / white fiber muscles like quads, calves, abs and biceps. We likely don't store glycogen in those muscles as well as a normal person so we have to get past the anaerobic phase to aerobic for better fuel utilization. Because those first few minutes are so uncomfortable, many people avoid exercise. And even then, as soon as we stop, the whole process starts over again.

It's important to work slowly when you're doing weight training instead of doing ballistic moves. It also helps to reduce reps and sets. If you feel a burn, definitely stop because our muscles don't make adaptive Type IIB fibers, or if they do, they atrophy right away. So to keep from damaging muscle cells and getting elevated CPK levels, we have to go at a slower pace and watch our tolerance.

Strength is not correlated with muscle size for us because of the electrolyte shifts. We can be very strong one minute, but if potassium shifts too much to the extracellular space it's like someone pulls the plug and we can become very weak in seconds. This is extremely dangerous if you're doing bench work with weights. Always use a spotter, even if you think you're okay.

I have not tried CoQ10 on a daily basis. That might be worth experimenting with to see if it helps reduce lactate. I eat a very high phosphorus diet and that helps me with endurance. The mainstay is skim milk, especially before and after a workout. Whey doesn't seem to do quite the same thing for me but it is a good source of phosphorus.

The other thing that really helps me is a low glycemic index diet. If I can keep my insulin levels steady, that really affects my muscles. In fact if I avoid sugar and high potassium foods I hardly notice the myotonia.

You might try sipping water with baking soda added during your workout (doesn't take very much) to see if that helps with your lactate levels. Energy drinks and some of the electrolyte replacement drinks are not usually helpful for us because of the added potassium. However drinks with Taurine added do seem to be good because that stabilizes ion channels that affect myotonia.

It can take quite a bit of experimenting to find what works best for you, but once you get a regiment it's worth it.

Jan

Type of Myotonia: Thomsen's

Country: US

Thanks Jan for the useful information,

But when you get your lactate levels lower with the help of baking soda for example, then does it result in better endurance also?

Or should we use higher lactate level figures as a benchmark for determining anaerobic zone if it's typical for us to have more lactate?

Björn

Country: Norway

The baking soda helps more with burning and cramping. What really helps me with endurance is the Acetyl-L-Carnitine and a high phosphorus diet. Because our muscles are firing constantly, even at rest, we have a much higher requirement for ATP than a normal person. I haven't noticed any benefit from creatine.

We had a product in the US called Phos Fuel that was just sodium phosphate, but I haven't seen it for a while. Most endurance supplements contain potassium as well as glycine and glutamic acid. All of them worsen myotonia for me. My nephrologist said that skim milk is the best for me to keep up phosphorus levels.

It's important not to use too much bicarbonate. I only put about 1/8 tsp (about 1/2 ml) in a liter of water. Something else that might help is a little magnesium. Again, a lot is not good, but smaller amounts (200-500mg per day) can reduce lactate levels and improve endurance. The best form is magnesium citrate.

Jan

Type of Myotonia: Thomsen's

Country: US