| Exercise Many of my friends have recommended I try to exercise on a regular basis. Surprisingly, moderate exercise has actually helped and allowed me to better manage the symptoms of McArdle’s Syndrome. The only exercise I can tolerate is short walks with several periods of rest along the way. I find walking to be very refreshing. Walking like most other things must go through my cost benefit analysis. How much pain and agony will this put me through? Do I feel up to walking? Can I stop and rest along the way? Many days I’d like to go for a walk but my body tells me the adverse physical consequences would far outweigh any benefit I would receive. So, like many other things in my life I simply must quietly set my dreams aside and pray for a better day. Sleeping Most of the severe cramping accompanying McArdle’s Syndrome occurs while I’m at rest. Sleep depravation has become a way of life for me. Carefully managing how I lay in bed, how I place my arms, how I position my legs even how I place my head on the pillow is very important. I sleep prepared to jump out of bed on a seconds notice to deal with the sudden onset of severe muscle cramping. Oxygen therapy (PRN) combined with Continuous Positive Air Pressure (CPAP) respiration has significantly reduced the incidence of muscle cramping during my resting hours. I also take Duragesic Fentanyl (a powerful narcotic), Gabapentin, Methocarbamol, Potassium Chloride and Diclofenac to help manage the symptoms of GSD Type V. Sugar Eating something sweet often helps me recover from the fatigue I feel after mild to moderate physical exertion. I usually feel better in a matter of 3 to 5 minutes after eating a piece or two of sweet candy. Warm weather / Cold weather The extremes of temperature severely exacerbate the adverse affect of McArdle’s Syndrome. Cold weather brings on the worst symptoms of McArdle’s Syndrome. Muscle cramping, pain, soreness, and weakness, are amplified by cold weather. During warm weather I must maintain proper hydration. Moderate to extreme physical exertion can bring on the most unpleasant consequences of McArdle’s Syndrome. Muscle fatigue, cramping, and physical exhaustion are just a few of the penalties I’ve paid for lengthy exposure to warm weather. Diet Recommendations run the gambit when it comes to what should I eat. I’ve found that a balanced diet does me the most good. Reducing the amount of salt in my diet and increasing my fluid intake has helped reduce the most severe symptoms. Avoiding complex carbohydrates i.e. bread, pasta, pretzels, pastries etc. is a real plus for me. Fresh vegetables, salads, meat, fish, and sweet deserts like fresh fruit etc. appear to do me the most good. No two people are alike. If you have been diagnosed with McArdle’s Syndrome it’s important you discuss your nutritional needs with your doctor. |
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