People living with MG are often confused about how much exercise is appropriate given the fact that physicians often caution that exercise can produce weakness and that rest provides the return of strength. Some patients interpret this information by assuming that any exercise other than the activities of daily living is detrimental to the disease process and will actually make their MG symptoms worse.
While the phrase, “better safe than sorry” comes to mind, it is not true that all exercise should be avoided. In fact, Myasthenia Gravis itself tends to produce a change in the muscle which is very similar to atrophy. Regular, moderate exercise can combat atrophy. Beneficial exercise is repetitive and done in a way that stops short of muscle fatigue. The key is to do something both pleasant and not stressful which will help keep weight down and reaffirm the positive, emotional feelings you attain through a regular individualized exercise program.
COPING WITH HEAT & EXERTION
Excessive heat can bring on muscle weakness as well as other MG symptoms. So, if you’ve always enjoyed the beach, the best time to go is to watch the sun go down and take pleasure in the array of colors filling the sky and reflecting on the water. Although initially a hot shower, whirlpool bath, hot tub or sauna feels great, they will leave you depleted and wiped out for the day. Even coping with the radical change in temperature when walking from your air-conditioned home or store to your car can cause you weakness. Don’t underestimate the debilitating potential of heat! If you have to be outside in the heat for an extensive amount of time, bring along a small cooler with freezer cold packs inside, so you can grab one when needed and place it on the back of your neck or on the inside of your wrists to help cool you down. If you like to garden, do it in the early morning hours before the sun has a chance to intensify. If you can afford it, better to pay someone to do the heavy work, like mulching, raking, mowing.
Coping with heat is challenging, but exposure to very cold temperatures can be as well. Exertion from shoveling snow and extended walking in snow can bring on weakness or other symptoms as well. Like they say…..”Everything in moderation!.”
NUTRITION, CHEWING & SWALLOWING
Like they say….you are what you eat and this is especially true when you have a chronic disease. Making poor food choices can result in nutritional deficiences which in turn can cause fatigue. Since MG can already cause fluctuating muscle weakness, it would be advantageous to choose a healthy diet with foods from the five food groups, avoid fats, sweets and salt and moderate portion size. In other words, try to be as healthy as you can.
If you’re experiencing weakness in your jaw and you have chewing and swallowing difficulties, try to plan your meals when your strength is optimal. Eat slowly and rest between bites if necessary. Try eating your main meal of the day in the afternoon, when your strength is greater or instead of regular size meals, try eating five or six smaller meals. If you are taking anticholinergic drugs like Mestinon, eat your meal about an hour after taking your medication.
Throat weakness may allow partially chewed food to get lodged in your airway and cause you to cough or choke while eating. It is advisable for family members and friends to take a class on how to perform the Heimlich maneuver so that if you wind up in trouble with a piece of food stuck in your airway and coughing won’t dislodge it, you’ve got a backup plan. In times of extreme weakness, you might have trouble swallowing your medication or even your own saliva. If you are having these kinds of difficulties, inform your MG physician immediately so that treatment modifications can be considered.
If you are having difficultly with eating and drinking, prepare foods in a way that makes them soft, tender and easy to chew and swallow. Chop, mash or puree foods. Moisten dry foods with liquid. While eating, take sips of liquid to soften foods in your mouth and help prevent solids from sticking in your throut. When eating sit upright in a chair and tilt your head forward. Avoid distractions while you eat and don’t talk and eat at the same time. If you continue to have problems with eating, evaluations by a nutritionist and a speech language pathologist may be helpful.
Medicines like Mestinon can cause cramping and diarrhea. If this is a problem, check with your doctor to see if the dose of medicine needs to be reduced or if s/he wants to add any medicines to help control the diarrhea. Don’t take over-the-counter antidiarrheal drugs without first consulting your doctor. If diarrhea persists, avoid foods that aggravate this condition, such as greasy, spicy foods and dairy products. Coffee, teas and chocolate contain a stimulant that can make diarrhea worse. Diarrhea can cause fluid and mineral loss, so try to choose foods that are easily digestible but are rich in minerals like potassium and as always, drink lots of water. When taking steroid medicines like Prednisone for an extended period of time, bone thinning can result, so it’s important to have adequate amounts of calcium and vitamin D in your daily diet. Steriod use can also cause fluid retention, so it’s important to reduce sodium and increase potassium in your diet. Avoid salt, smoked and cured meats, canned food, pickled products and salty snacks.
(partial information was taken from MGFA handout materials)
Muscle cramps seem to be a common problem among MG patients. MG & MUSCLE CRAMPS CLICK HERE