a distorted pair of feet stand on a distorted scale, showing the disorienting struggle with weight loss.

The Unspoken Battle of Weight Loss

When many people with myasthenia gravis (MG) talk about their struggle with weight, they often talk about weight gain. Weight gain is a common side effect of prednisone.

It is often associated with "moon face," facial swelling that causes the face to look puffy and round.1 When I was on higher doses of prednisone (60 mg) and while tapering down I definitely experienced this. However, as I reached 10 mg per day and continued tapering, this quickly faded and a new problem arose.

Tapering down prednisone

As I tapered down my prednisone dosage, some of my symptoms would come back as my body was trying to adjust. Swallowing became more and more difficult.

My fatigue settled in like a cloud over my head, taunting me all day. I had no energy to cook, and when I did eat, it was so difficult I often stopped after a few bites. I would go to bed hungry, too tired to try to find something to eat.

Because of the strict diet, I was adhering to, I cut out carbohydrates, dairy, and processed foods. This made it even more difficult to find food that I could eat. I was caught between worries of eating the wrong foods and eating at all.

Because my swallowing muscles were so weak, I experienced what I think was constant belching. It was like my throat muscles couldn't handle the food I was eating and kept pushing it back up. Sometimes when trying to drink water, it would come out of my nose.

Focusing on weight gain

My weight spiraled down and I felt helpless as eating became more difficult and unappetizing. I bought protein powder and tried to make high caloric healthy smoothies, adding avocado for more healthy fats. However, the grittiness of the powder still made it difficult to get down.

Every time I stepped on the scale the number dropped, all the way down to 93 pounds. I had not been that light since junior high. The lighter I became, the more fatigued and faint I felt. My family felt unsure of how to help me.

After finally finding the right treatment, my body started to recover. My swallowing became easier, and I was able to eat more. However, I realized that I had developed a fear of food. I was worried that if I ate the wrong foods, it would trigger flares in my body.

Enjoying food again

What turned everything around was when I started focusing on joy and fulfillment. For so long, I lived in desperation. For 2 years I solely focused on getting through each day. With the demands of 2 toddlers and my failing body, all I could do was try to survive.

Now that my health and energy were restored, I had to rewire my thinking. What if I could eat just to enjoy food? I started trying foods that I used to love. I savored meals as I ate them, grateful that I could eat with ease. Finally, I learned to listen to my body to figure out what foods were right for me rather than adhering to a formula.

Prepared for the future

Finding this community has led to gaining many insights and resources. If this were to happen in the future, I now have the resources to empower those around me. I plan to put together a list of MG-friendly recipes and restaurants and have that on hand for family and friends who want to help.

If you find yourself in a similar situation, I encourage you to reach out for help. Work with your doctor to find a more effective treatment and rally your community to help you get through.

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This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Myasthenia-Gravis.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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