Nutrition and Myositis

Adapted from a presentation to the Myositis Support Group

Myositis is the name for a group of rare conditions in which some of the main symptoms are weak, painful, or aching muscles and fatigue after walking or standing. While there is no specific diet for myositis, eating the right foods can help ensure you are feeling your best.

An assortment of nutritious foods on a cutting board.

It is important to eat a balanced diet that focuses on fruits and vegetables, whole grains, and lean proteins with an emphasis on fatty fish.

Maintaining a balanced diet

Fruits and vegetables

These contain fiber and antioxidants (a group of nutrients that fight free radicals, which can damage cells). They are also an excellent sources of vitamin C and vitamin A. Fresh or frozen varieties (without sauces) are both preferred. If canned fruits and vegetables are consumed, choose low-salt, low-sugar preparations, and make sure to rinse them off before eating. Intake of dried fruit and fruit juice should be limited due to their high sugar content. Aim to have one serving of fruit OR vegetable OR both per meal. A single serving is equal to ½ cup of cooked vegetables or fruit, or one cup of raw vegetables or fruit.

Grains

Choose whole grains, such as brown and wild rice, whole wheat bread, whole wheat pasta, rye, oats, quinoa, and barley. They are a low-fat source of fiber and energy. Whole grains also provide a good supply of folate, vitamin B6 and vitamin B2, selenium, and zinc. It is recommended to eat at least three servings of whole grains a day

Meat, fish, and poultry

Choose lean proteins such as eggs, skinless poultry, lean ground chicken/turkey, fish, lean meats (beef tenderloin, 90/10 ground beef, veal, lamb, pork tenderloin). As far as cooking preparations: broiling, baking, roasting, poaching, or grilling are better options over frying. Meat, fish, and poultry are also excellent sources of zinc, B vitamins, and iron. The recommendation of protein depends on a variety of factors such as activity level and weight, but on average a sedentary man should eat around 56 grams of protein per day and the average woman should consume around 46 grams of protein per day.

Beans, nuts, and seeds

A good source of plant-based protein as well as high in fiber. They provide vitamin E and selenium. Choose unsalted nuts/seeds and their butters (peanut, almond, cashew, walnut, pumpkin seed, sunflower seed etc.). Dried beans/legumes are preferred. If using canned, choose the low sodium option and make sure to drain and rinse. Soy products like tofu, tempeh, and edamame are also great sources of plant-based protein.

Dairy products

These are the richest source of calcium − an essential mineral that builds bone and muscle. They also provide zinc, B vitamins, vitamin D, and selenium. Individuals who avoid dairy may choose from lactose-free milk, soy milk, almond milk and other plant-based dairy products that provide calcium. The goal is to consume three servings of dairy products or dairy substitutes per day.

Healthier fats

Good fats come mainly from vegetables, nuts, seeds, and fish. One type of healthy fat is called “monounsaturated fats.” Olive oil, peanut oil, canola oil, avocados, and most nuts, as well as high-oleic safflower and sunflower oils are examples of monounsaturated fats. Try to limit solid fats, such as butter, stick margarine, shortening, and lard as they may contribute to heart disease.

Omega-3s

These are important as they may reduce inflammation. Good sources include fatty fish (salmon, mackerel, anchovies, sardines, and herring), avocados, ground flaxseed, chia seeds, hemp hearts, walnuts, pecans, canola oil, walnut oil, and flaxseed oil.

Addressing swallowing difficulties

Swallowing difficulty (dysphagia) occur in approximately one-third of people with myositis. Patients with these symptoms should consult their physician especially if:

  • Swallowing is painful.
  • You feel that food is “stuck.”
  • You have heartburn.
  • You cough often when swallowing solids or liquids.
  • You have low-grade fevers.
  • You find it difficult to finish meals.
  • You find that your meals are taking longer.
  • You find that you lose interest in eating.

Swallowing difficulties may be caused by dry mouth and/or muscle weakness. This can lead to complications, such as aspiration pneumonia (food getting stuck in the lungs), inadequate nutrition, weight loss, and dehydration.

After consultation with your physician, it may be recommended to go for certain tests to further investigate your swallow. You also might be referred to a speech pathologist, who can provide personalized strategies to help you manage your swallowing difficulties

Modifying your diet may also be helpful. Some people with myositis find that dry crumbly foods, such as crackers, dry cereal, chips and muffins are harder to eat. Be sure to speak with your healthcare professional about what works best for you, as what works well for one person, may not work for others. There are also strategies that can be recommended to help you continue to eat your favorite foods.

Your medical team may recommend:

  • soft foods that are easier to swallow
  • moist foods
  • drinking fluids in between bites of food
  • choosing blended soups and smoothies
  • keeping a log to determine which foods work best

Maintaining diet and proper nutrition when you have swallowing difficulties

Patients with swallowing difficulties may find it challenging to follow a balanced diet and get the proper nutrition. Here are some tips:

Ways to increase protein

  • Blend nuts/seeds or tofu into smoothies. Nut/seed butter can also be stirred into yogurt or hot cereals making them less sticky and easier to swallow.
  • Puree beans/lentils or soy products and add to soups/stews or sauces.
  • Hummus is a great option to add both calories and protein and can be spread onto breads or crackers making them easier to tolerate.
  • Yogurt, especially Greek yogurt, can be added to hot cereals, smoothies, soups, sauces, and dips to increase the protein content.

Ways to increase calories

  • Add healthy fats, such as nuts/seeds or avocados into smoothies or shakes. They can also be blended into sauces or soups to increase nutrient density.
  • Use full fat-Greek yogurt, avocado or tahini (sesame seed paste) in place of mayonnaise for tuna, egg, chicken, or chickpea salads. These softer salads may also be easier to tolerate.
  • Ways to increase fruits/vegetables intake:
  • Cook vegetables until easily mashed with a fork. Blend softened vegetables into smoothies, soups, or sauces
  • Fruits can be blended into a smoothie or just pureed and eaten like an applesauce
  • Season foods with spices that are rich in antioxidants, such as cinnamon, turmeric, and ginger.

To help manage weight loss, it may be recommended to incorporate a high calorie, high protein oral nutritional supplements, such as Boost® or Ensure® or using fortifiers like Carnation® Instant Breakfast in smoothies. If severe weight loss is a concern, your doctor may recommend tube-feeding

Medications and side effects

Many medicines that are taken for myositis, including corticosteroids, nonsteroidal anti-inflammatory agents (NSAIDS), intravenous immunoglobulin (IVIG), and immunosuppressants (methotrexate, azathioprine, and cyclophosphamide), may have undesirable side effects. In some cases, nutritional/dietary measures can help lessen these side effects. (Learn more by reading Guidelines to Help Reduce the Side Effects of NSAIDs.)

Here are some nutrition suggestions for patients who take specific medications:

Corticosteroids

These medication act as powerful anti-inflammatory and immunosuppressive agents but also increase the risk of developing other conditions, such as type 2 diabetes, high blood pressure, heart disease, and obesity. Be mindful of these nutrients when taking corticosteroids:

  • Calcium and vitamin D: Corticosteroids can cause or worsen osteoporosis, a disease in which bones become fragile and more likely to break. Consuming adequate calcium daily is important for bone health. Vitamin D helps the body absorb the calcium, so having your blood levels of vitamin D checked and taking a supplement as indicated will be helpful in bone health. Examples of calcium containing foods are dark green, leafy vegetables (spinach, broccoli, collard greens), milk, cheese, and yogurt or calcium supplements that contain Vitamin D.
  • Sodium: Corticosteroids can elevate blood pressure, so limiting sodium may be important. If you are experiencing fluid retention that causes swelling (edema), you should lower the amount of salt and sodium-containing foods you eat; in particular, processed foods should be avoided.
  • Fat: Corticosteroids can also elevate cholesterol and lipids, so watching intake of processed/fried foods, fatty meats can help decrease risk of heart related issues.
  • Sugar: Corticosteroids can cause an increase in blood sugars. To help keep blood sugars stable it is important to limit intake of concentrated sweets (desserts, juice, regular soda, other sugar-sweetened beverages).

Intravenous immunoglobulin (IVIG)

This may have side effects, the most common of which may include headaches, chills, dizziness, fever, nausea and vomiting, increased blood pressure and fatigue. To maintain proper nutrition during treatment, prepare foods that you can tolerate in advance, or, if possible, consider getting help with food shopping and meal preparation. Maintaining adequate hydration is also important during IVIG infusions.

Immunosuppressants

Sun-sensitivity is associated with these drugs. It is important to have your doctor check your vitamin D levels, regardless of sun exposure, as vitamin D deficiency is very common. In addition, you may need increase your intake of folic acid, which can be found in dark leafy green vegetables, beans, nuts, whole grains, and seafood. Immunosuppressants may cause nausea, fatigue, fever, stomach pain, and associated decreased appetite, try to consume small frequent meals that are easy to digest.

Anti-inflammatories

Stomach irritation can occur when taking aspirin or NSAIDs (ibuprofen, naproxen, celecoxib). Avoid taking on an empty stomach. When taking NSAIDs, you may need to steer clear of supplements that can act as blood thinners such as vitamin E and fish oils.

Vitamins, minerals, and supplements

While vitamins, minerals and supplements may be helpful for some people with myositis, it is important to consult your physician before starting any supplements as they can interact with medications. Unlike drugs, these products are not regulated by the FDA. There is also a lack of solid evidence/research to conclusively determine the effectiveness of many supplements

In general, consuming a well-balanced diet is recommended and then using supplements to support getting what your diet may be lacking. Here are some of the supplements that may provide some benefit:

Creatine

This is studied in muscle diseases, and it is thought to build muscle. This supplement is found naturally in meat and fish, though cooking slightly decreases the level. High doses have been found to harm the kidneys; however, these findings involve the long-term use of creatine in athletes. Consultation is advised if considering creatine supplementation.

Fish oil

Fish oil may play a role in chronic heart and autoimmune disease by reducing inflammation. Fish oils contain large amounts of Omega-3s, EPA and DHA. Caution should be taken when using fish oils. Speak to your physician if you are taking fish oil and if surgery is planned or if taking blood thinners.

Calcium and vitamin D

These have bone-building nutrients that may help to prevent or slow down the progress of osteoporosis. In addition to dairy products, calcium can be found in wild salmon and sardines (with bones), enriched/fortified soy milk and nut-based milks, shitake mushrooms, broccoli, kale, and fortified breakfast cereals. The body can only absorb 500 mg to 600 mg of calcium at a time, so it is recommended to take two supplements spread apart, like morning and night. The amount of vitamin D an individual needs per day varies from person to person and should be discussed with the individual’s physician

Coenzyme Q10(CoQ10)

Lower levels of this enzyme have been found in people with muscle diseases, but lack of research makes it difficult to know what the benefits of supplements are for people with myositis.

Glucosamine

This is thought to play a role in cartilage, ligament, tendon, and muscle repair and used in combination with chondroitin to reduce joint pain in arthritis. However, there is a lack of research and evidence that this can help people with myositis.

Summary

Eat a diverse diet with all the major food groups. Focus on filling up your plate with fruits and vegetables, choosing whole grains and lean proteins with emphasis on fatty fish for optimal health. Consuming a balanced diet may help reduce some of the effects of myositis, prevent nutritional deficiencies, aid in reducing side effects of medicines and treatments, maintain a healthy weight, and overall contribute to feeling better.

Authors

Sotiria Everett, MS, RD, CDN, CSSD
Clinical Nutritionist
Department of Food and Nutrition Services

Summary by
Suzan Fischbein, LCSW
Myositis Support Group Coordinator

Reviewed and updated 2022 by
Danna Raphael, RD, CDN
Clinical Nutritionist
Department of Food and Nutrition Services

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