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Re: Exercise Routines

Sue,

That's really a shame that your doctor gave you misinformation and scared you away from exercising. It is true that we often don't make the adaptive Type IIB fibers that help with strengthening of the muscles when they are stressed, but you couldn't have bulky muscles with MC if they didn't regenerate!

You definitely need a gentle exercise program that will help you regain muscle mass, but you may also need something to increase your testosterone levels. I take 5 mg of DHEA every day which can be converted into various hormones. The level tends to drop considerably in your 50s. It's also important to get enough protein to build muscles. There's a supplement called Acetyl-L-Carnitine that can help with the pain and the muscle development. It is found mostly in meat, so if you don't have much in your diet, it can be an importatn supplement.

If your joints are extremely lax you may want to see a rheumatologist to find out if you have Ehlers-Danlos Syndrome Hypermobility Type. That runs in my family and it is a defect in the connective tissue so that the joints are unstable. Keeping the muscles strong helps to some extent.

Swimming is great, but it is not weight-bearing and will not help with osteoporosis prevention. Have you had a DEXA scan? Studies have shown that even light weights (2-4 pounds) are enough to keep the bones strong. You can drape a sock filled with rice over your foot while you're watching TV at night and raise your leg up and down, then do the same with your arms. Water walking can give an isometric workout to your lower body if you move fast enough.

The pain you're feeling is probably from deconditioning and joint deterioration, not from the MC alone. I suspect there are some nutritional deficiencies contributing.

There is a DVD that I really like called Y-Dan. If you do a search you'll find it online. It's a form of Tai-Chi and is an excellent, low-stress workout that will help you get your circulation built back up to help feed the muscles.

I would say to ask for a script for PT, but so many physical therapists are clueless about MC and how to exercise carefully so that we don't tear muscles and cause more pain. I think you can get back in shape on your own :-)

Jan

Type of Myotonia: Thomsen's

Country: USA

Re: Exercise Routines

Thanks for the info, Jan. I am going to look into (and start) the suppliments that you suggested. I do eat a lot of meat, as I have 2 teenage boys that are still growing.
I was already thinking about the rheumatologist as my hands (fingers) have been swelling quite a bit lately. And I will order the Y-Dan today! I have also been having balance issues (probably from the lack of exercise) and this would help.
I am so very thankful for your help over the years, Jan. You always have an answer for me!

Type of Myotonia: Beckers

Country: USA

Re: Exercise Routines

Sue,

Like Jenna mentioned, you may have another issue related to muscles going on. I have something called a mitochondrial disease that runs through my dad's family (the MC is on my mother's side). It affects muscle development because it changes how the cells function.

Here is a link to a website on myopathies. It mentions that scar tissue often replaces muscle cells and they atrophy. Sometimes this is caused by a mutation causing an enzyme deficiency.

Myopathies - The Dana Foundation

There are a couple of major centers that specifically deal with muscle diseases. One of the best is the Cleveland Clinic. There are also clinics in Alabama, Texas, and California. Let me know if you'd like more information for further testing.

Jan

Type of Myotonia: Thomsen's

Country: USA

Re: Exercise Routines

Sue:

I would ask your doctors how they determined that your muscles don't degenerate, especially if you are confirmed to have Becker MC and not myotonic muscular dystrophy. While there are some studies which have observed that some individuals with certain MC causing mutations, appear to have some muscle atrophy, at least one study has called the existence of atrophic MC into question because individuals were not simultaneously tested for myotonic muscular dystrophy, and some individuals have been found to be positive for myotonia congenita causing mutations, as well as myotonic muscular dystrophy when they were tested for both.

I was tested for both MC and myotonic muscular dystrophy, and I only tested positive for MC. None the less, I do struggle with muscle weakness and muscle stamina issues, to the extent that I've wondered if I might have something else going on, but there's a fairly high likelihood that it is from the MC.

I've lost a significant amount of muscle mass over the years, which might be why I'm not locking up nearly as bad as I used to, but I struggle physically with fairly mundane tasks because my upper body muscles fatigue so quickly, and I have a hard time enjoying myself at places like Disneyland....I usually feel like I've done a week of hard labor at a prison camp in Siberia by the end of the day when I go. My upper back and shoulder muscles cramp up badly and my whole trunk and torso burn.

But, I can build muscle. I have to do this slowly and carefully. If I start out with weights that are above 50%-60% of my maximum lift abilities, then I will lose strength. I have to start with the lightest weights I can do about 10-15 reps with and still only approach the edge of fatigue. Meaning I could probably actually do 30-40 reps with these weights before I have to stop.

I increase the number of reps when things get easier, and only increase the weight, in the smallest possible increments, once I'm up to 25 reps or so. With the new weight I drop back down to 10-15 reps depending.

What I'm probably doing is ensuring I don't break down muscle faster than I can repair it.

But I only seem to increase my strength as far as lifting goes. I don't seem to increase my stamina in my torso and trunk muscles, and apparently I have trouble isolating certain muscle groups...probably the really weak ones. I don't seem to be able to build much in the way of strength in my pecs. Rather, my deltoids tend to take over the lifting when I try to work that area. Even when I could do 25lb dumbells on the incline deltoid press, I still had trouble doing things like dishes and laundry because I didn't have the muscular stamina in my lower torso to support the weight of my arms above a certain level for more than a few minutes without fatiguing certain muscle groups.

Type of Myotonia: Becker

Country: USA

Re: Exercise Routines

I meant regenerate, not degenerate. I didn't catch that in time to correct it.

Type of Myotonia: Becker

Country: USA

Re: Exercise Routines

Interesting info on the myotonic dystrophy. Never thought about having more than 1 thing going on.
My Dr. took a biopsy of the thigh muscle and said that there was scar tissue instead of regenerating cells in that sample. So he thought that the muscle just dies when torn instead of building back up. So he warned me not to do too much exercise.
But after not exercising the last few years, (since being retired I don't get the work out like when I was a letter carrier) I can see a dramatic muscle loss. There can't be any more loss than this, so I might as well try working out slowly, as you suggested.
Today is a new day and I am going for it! I really appreciate your help, Jenna. Have a great day and take care!

Type of Myotonia: Beckers

Country: USA

Re: Exercise Routines

Sue:

Was your final diagnosis made by genetic testing?

I don't know what scar tissue in a muscle biopsy would indicate. I had a biopsy which came back normal, but I did insist they take it from my leg where I had more myotonia, rather than my arm, where I have more weakness....I didn't want to lose my precious arm muscle :-) In my legs, I had plenty to spare.

Type of Myotonia: Becker

Country: USA

Re: Exercise Routines

>I have a bit of an aversion to doing any weights with my legs because I'm worried increased strength/muscle will mean increased myotonia, and I don't want to lose the mobility I have.

My legs hurt the least when I was doing the most serious body-building-type lower body weights.

Like you, I have less strength and less pain in my upper body, both.

Type of Myotonia: Thomsen's

Country: USA

Re: Exercise Routines

Stretching does NOT help MC contractions, in my experience, and can actually worsen them. You have to force the muscle to shorten, relieve the cramp, and then stretch the uncramped muscle. Stretching the cramped muscle will make it cramp harder.

That said, EXERCISE is the best thing you can do for the condition! The size of your muscles is NOT associated with the severity of symptoms. Hypertrophy is in itself harmless. Exercise moderately every day, and you will be in the least pain.

Type of Myotonia: Thomsen's

Country: USA