Unintentional Weight Loss in Multiple Sclerosis: Key Causes and Expert Management Tips

Experiencing unexpected weight changes after an MS diagnosis is not uncommon. Weight fluctuations, including unintentional weight loss, are significant concerns for many individuals with multiple sclerosis (MS). Understanding the underlying causes is crucial for managing your weight and overall well-being. This guide provides a practical roadmap to healthy weight management tailored to the unique challenges faced by those living with MS, exploring the various factors contributing to these changes and offering expert-backed strategies to help maintain a healthy weight.

The Complex Relationship Between MS and Weight

Multiple sclerosis affects everyone differently. Weight gain often receives more attention, but unintentional weight loss is a significant concern for many individuals with MS. Weight changes are one of the more common side effects of multiple sclerosis. Depending on the symptoms of those affected, both weight gain and weight loss can occur. Factors that can influence weight include fatigue, depression, muscle weakness, physical inactivity, or medication.

Factors Contributing to Weight Loss in MS

Several factors can contribute to weight loss in MS:

Fatigue: Overwhelming tiredness (fatigue) can significantly reduce physical activity, leading to lower calorie expenditure. It can also make even the thought of preparing and eating food feel daunting. Most people with MS will report fatigue at some point during their disease course, and for many, it is their most debilitating symptom. Multiple sclerosis-associated fatigue is not a feeling of tiredness or sleepiness. It is defined as a significant lack of physical and/or mental energy that interferes with daily activities, including work. It is often described as a “pervasive exhaustion.” To conserve energy, people with MS will skip exercise or choose not to cook healthy meals, which could lead to weight gain over time.
Depression and Anxiety: These are frequent companions to MS and can significantly impact appetite and eating habits. You might find yourself eating less, even if unintentionally. People with MS commonly experience depression and anxiety, which can impact how one functions and their overall quality of life. When left untreated, depression and anxiety can impact sleep, cognitive function, fatigue, and pain, as well as other MS symptoms. As a result, it can be very difficult to incorporate exercise and physical activity into one’s routine, leading to a sedentary lifestyle, which is often associated with weight gain. Additionally, many people cope with difficult emotions by overeating. Loss of motivation is common for those who suffer from mood disorders, which can make it very challenging to take care of basic needs like meal planning, grocery shopping, preparing food, as well as eating.
Pain: Chronic pain, a common symptom of MS, can suppress appetite and make the simple act of preparing meals a considerable effort. Studies report that 2/3 of people with MS may experience some type of pain. Musculoskeletal or joint pain can occur in people with MS secondary to muscle weakness, gait challenges, balance problems, spasticity, or muscle tightness. Neuropathic pain, or the feeling of burning or tingling, is another common type of pain people with MS can experience. People with MS can also experience spasticity pain, which can be described as muscle tightness/spasms or abnormal jerky movements.
Medication Side Effects: Some MS medications can affect appetite, metabolism, or digestive function, potentially leading to weight loss. Others may cause weight gain, and the effects vary considerably between individuals. Some medications can also cause weight loss. Antidepressants such as bupropion can have a stimulating effect. They increase energy consumption, which can lead to weight loss if the diet and activity level remain the same.
Dysphagia (Swallowing Difficulties): Difficulty swallowing can make adequate nutrition intake challenging, resulting in weight loss. The effort required to eat can be exhausting. Multiple sclerosis can affect the muscles that are active during swallowing. As a result, swallowing disorders (dysphagia) can occur, making it difficult to swallow solid and liquid food. As a result, those affected reduce their food intake.
Disease Activity: Increased disease activity can impact energy levels and appetite, resulting in weight changes.

Taking Control: A Step-by-Step Guide to Healthy Weight Management

Managing your weight effectively with MS requires a holistic approach that addresses multiple factors simultaneously. It's not a quick fix but a sustainable lifestyle change. Here's a practical plan:

Consult Your Healthcare Team: This is the foundational step. Partner with your neurologist and a registered dietitian (RD) to create a personalized plan that considers your specific symptoms and needs. They can assess your overall health and potentially identify any underlying medical conditions.

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Develop a Personalized Nutrition Plan: Your RD will guide you in creating a nutritionally balanced meal plan. This plan should factor in any swallowing difficulties (dysphagia) or other challenges you may face. Small, frequent meals might be more manageable than large ones. Focus on nutrient-dense foods to maximize caloric intake. Depending on the origin and severity of the weight loss, it can help to eat smaller meals throughout the day. Planning your meals and cooking large servings so you can have easily reheatable food may also help, especially when you don’t feel like cooking. It can help you avoid skipping meals.
Incorporate Gentle Exercise: Physical activity is vital, but moderation is key. A physical therapist can design a safe and effective exercise program based on your energy levels. Think short walks, water aerobics, or chair yoga-activities that are manageable and enjoyable. Light, regular physical activity normally helps to reduce weight. This also includes activities in the garden or a simple walk. As this can be difficult at times due to the accompanying symptoms of multiple sclerosis, it is important to avoid overexertion. The right amount of exercise depends on the normal activity level: For patients who are very inactive in everyday life, short walks can be a start, which can be extended over time. As some of the accompanying symptoms of multiple sclerosis (e.g., fatigue) can be influenced by the level of activity, it is advisable to discuss weight reduction with the doctor treating you in advance. They know you holistically and can best assess a weight loss strategy that is right for you.
Manage Medication Side Effects: Work closely with your neurologist to manage any medication side effects that might influence your weight or appetite. They may adjust medications or suggest alternatives. Open communication is essential. If you notice any changes or side effects of a therapy, you should discuss these with your doctor. There may be alternatives that you tolerate better.
Address Mental Health: If depression or anxiety are impacting your appetite or overall well-being, seek professional help. Therapy, medication, or both can significantly improve your mental and physical health.
Track Your Food Intake: A food diary can provide valuable insights into your eating habits, helping you make conscious, informed choices. It's about awareness, not restriction.

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Prioritize Sleep: Aim for 7-9 hours of quality sleep nightly. Adequate sleep regulates appetite and restores energy levels. In addition, people with MS can have sleep disturbances which can lead to poor sleep quality and worsen fatigue. Poor sleep quality and disturbances have both been associated with weight gain independent of fatigue. Pain, spasticity, urinary frequency, and mood disorders can also lead to poor sleep quality. People with MS-associated fatigue may take naps during the day, which could also contribute to poor sleep quality at bedtime.

Long-Term Strategies for Sustainable Weight Management

Maintaining a healthy weight with MS is an ongoing process requiring consistent effort and monitoring. Here are some long-term strategies:

Regular Check-ups: Schedule regular follow-up appointments with your healthcare team to track your progress and adjust your plan as needed. Your plan should always be discussed with your doctor so that you don't put too much strain on yourself and, in the worst case, worsen your symptoms. Changing your weight should also be a long-term goal. Small changes that are maintained are more effective than large ones that are discarded after a short time.
Seek Support: Consider joining a support group to connect with others facing similar challenges. Sharing experiences and receiving mutual support can make a significant difference.
Practice Self-Compassion: Recognize that it’s a journey, not a race. Celebrate small victories and don't get discouraged by setbacks.

Dietary Considerations and Nutritional Deficiencies

Adjusting diet may also have positive effects on the course of the disease, as research indicated positive effects of an anti-inflammatory diet for patients with multiple sclerosis.

Foods that should be avoided are:

Highly processed foods
Foods with added sugar
Saturated fats
Excessive salt
Fried foods
Sweets
Sweetened drinks

Foods that should be consumed more often are:

Fruit and vegetables
Wholemeal products, oatmeal, and unhulled rice
Nuts, beans, and seeds
Vegetable proteins, legumes
Fish for omega-3 fatty acids
Water/unsweetened teas

Healthy alternatives should also be considered for snacks and in-between meals: Sliced fruit and vegetables instead of sugary baked goods, nuts, yogurt, or wholemeal crackers can satisfy small hunger pangs in between meals. Changing your diet often sounds like a big task. It's important to make a start and build up new habits step by step - and even a piece of dark chocolate is sometimes okay.

Being underweight may be a sign of nutritional deficiencies. Talk with a healthcare professional if you’re losing weight over time. You may need to change medications or try another treatment. People with MS may need to supplement with certain nutrients to maintain healthy levels. Increasing dietary intake of folate, magnesium, and iron may also be helpful. More research needs to be done, but it may be worth consulting your doctor or dietician for advice.

Lifestyle Interventions

There are a variety of lifestyle interventions that can help people with MS maintain a healthy weight. There is no specific diet for MS, but following a healthy eating pattern can help manage daily symptoms and reduce weight gain. Focus on limiting processed foods that are high in sugar and sodium and prioritize eating a wide variety of whole foods like fruits, vegetables, whole grains, legumes, and lean proteins. Also, practice mindful eating, when you listen to your body’s hunger cues, you are less likely to overeat or eat when you are not actually hungry.

Exercise can also improve symptoms like fatigue and cognitive function in addition to helping maintain a healthy weight. A combination of aerobic exercise and strength training is most ideal. Aerobic activities like walking, biking, and swimming burns calories, and weight training builds muscles. Increasing muscle mass improves one’s basil metabolic rate, meaning they burn more calories throughout the day even at rest. Aim for 150 minutes of moderate activity each week.

Managing stress is also critical in achieving and maintaining a healthy weight. When the body is under stress, it releases a hormone called cortisol, which can impact one’s weight in a variety of ways. Cortisol can increase appetite, promote fat storage, slow down one’s metabolism, and disrupt sleep. Deep breathing, medication, and exercise are all great ways to help manage stress.

When to Seek Immediate Medical Attention

Sudden and significant weight loss can sometimes indicate a more serious underlying problem. Contact your doctor immediately if you experience:

Rapid, unexplained weight loss.
Weight loss accompanied by other concerning symptoms (fatigue, fever, changes in bowel habits, etc.).

The Link Between Rapid Weight Loss and MS Onset: A Note of Caution

Some neurological complications such as polyneuropathy and optic neuropathy that are common in MS have been observed in consequential severe weight loss (WL) after bariatric surgery. Presented cases had experienced intended and intensive WL (mean of WL was 8.8 kg/month overall) in the closest time to expression of MS symptoms. They all had a history of obesity and made concerted efforts to reduce their weight with disordered and abnormal WL diets. It is considered that severe or rapid WL with intensive food intake restriction may be etiologic or accelerating factor for MS due to nutritional deficiencies.

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