Changes in Physical Health

Changes in Physical Health

Many people with CF report feeling stronger and more energetic with modulators, which can make it easier to be active and enjoy new routines. More energy can feel amazing but also overwhelming. Some people push themselves too hard and crash later, while others feel guilty for needing to rest even when they look well.

It’s not always clear how much is too much, what side effects to expect, or how to adapt nutrition when your body works differently. Balancing energy, stamina, and rest takes practice and time.

Recognising When You’re Sick

CF infections and inflammation can sometimes be present with little or no obvious symptoms, meaning waiting until you feel clearly unwell can risk missing the window when treatments work best. With better health and fewer baseline symptoms, some people say it’s harder to tell when they’re getting sick, especially when things feel normal most of the time. That’s why learning to tune into subtle changes, and sticking with regular, preventive therapies, is so important to help stop infections from taking hold.

Learning the New Signals Your Body Gives You

As your baseline improves, the sign that something’s “off” might be smaller or harder to notice. You might not get the same changes in cough, chest pain, or breathlessness that used to tell you something was wrong. At first, it might be difficult to detect your new unwell symptoms, as these may be different to pre-modulator. Research shows that on modulators, cough and sputum production may reduce and exacerbations can present with milder or atypical symptoms, meaning relying solely on how you feel can become riskier.

It is important to listen to your body and try to pay attention to subtle signs of an exacerbation which might include:

• A change in your baseline cough
• Coughing with exercise
• Getting puffed doing things that didn’t tire you before
• More mucus than usual, or a change in colour/texture
• Needing more rest or finding it hard to concentrate
• Changes in energy or sleep
• Feeling a bit “off” or run-down
• Mood changes or low motivation
• Decreased appetite
• Slight unexplained weight changes

Tip: You know your body best, so if something feels “not quite right”, trust that instinct. Acting early can help you avoid setbacks or more serious illness. Remember to check in with your team if something doesn’t feel right, even if the symptoms are very subtle. It is better to check and be reassured, then let small symptoms linger that may be something that needs investigating.

Nutrition

The “New” CF Diet

As health and medications improve outcomes for a lot of people with CF, we are seeing better absorption of nutrients and changes in body shape and composition. As a result, we have seen a shift amongst CF dietitians away from the legacy CF diet of high fat, high calorie, high salt foods, historically recommended to compensate for malabsorption and increased energy needs.

The consensus internationally is to prioritise dietary quality to support long-term cardiovascular and metabolic health. This modern approach encourages a balanced and nutrient-dense diet in line with the Australian Guide to Healthy Eating, including:

• Fruit and vegetables
• Whole grains and legumes
• Lean proteins, dairy and alternatives
• Being mindful of foods high in sugar and fat

For more information on the CF diet, click here.

Navigating Nutritional Changes

Adjusting to changes in appetite and nutritional recommendations can be a significant shift for many people with CF. After years of relying on specific foods to meet energy needs and support health, it’s understandable that a change in diet types can be challenging as people explore new nutritional needs.

People with CF taking Trikafta may experience some weight gain and body composition changes, even with reduced calorie and fat intake. This reflects how modulator therapy can change the body’s nutritional needs, and many people find they need to adjust their food intake and enzyme dosage, which can take time and support to get right. There may also be new, unexpected side effects like bloating or abdominal discomfort that need to be considered. For adolescents who have grown up on the traditional high-calorie “legacy” CF diet, these changes can be particularly challenging, and parents may also find it difficult to adjust to a different nutritional approach after years of reinforcing high energy intake.

Modulator therapy may also influence requirements for salt and vitamin supplementation. These changes are highly individual and depend on factors such as lung function, pancreatic status, physical activity, and overall health. Feeling unsure or unsettled while navigating these changes is completely normal. Working closely with your CF dietitian and multidisciplinary team can help you find a balance that supports energy, digestion, and wellbeing.

Changes in weight or body composition are a common and often welcome outcome of modulator therapy, as improved nutritional status is linked to better lung health and overall functioning. At the same time, these changes can raise new challenges for some people, including body image concerns or uncertainty about what “healthy” looks like now.

As health improves, some people may notice a higher weight than they were accustomed to before modulators. While this can support lung function, it may also bring attention to other health markers that were not previously a focus, such as cholesterol levels, blood pressure, or insulin regulation. A balanced, individualised approach that considers both physical and emotional wellbeing is key.

This doesn’t mean aiming for a “perfect” weight or focusing on the number on the scale. Instead, the emphasis is on supporting overall health through balanced nutrition, enjoyable movement, and stress management, regardless of changes in body size. This is often referred to as a weight-neutral approach, which focuses on health behaviours, quality of life, and long-term wellbeing rather than weight alone.

More information can be found on nutrition here.

A Weight-Neutral Approach

Everyone’s body is different and that’s something to respect, not fix. A weight-neutral approach is all about supporting your overall wellbeing, no matter your body size or shape. It focuses on how you feel, move, and nourish yourself, rather than the number on the scale.

For people with CF, this mindset can make a big difference:

• Weight has probably been tracked closely since you were little, which can shape how you see your body and food.
• You might find it freeing to focus on strength, energy, and feeling good instead of how you look.
• Shifting to this approach can build confidence, reduce stress, and help you feel more connected to your body’s purpose.

A weight-neutral approach doesn’t mean pretending everyone is healthy at every size, and it’s not “anti–weight loss.” It just means health is about more than weight.  

Research shows that focusing on healthy habits, not weight, can actually lead to better outcomes, like lower cholesterol, improved diet quality, more physical activity, and higher self-esteem, even without losing weight. Click here to read more on exercising with CF.

Tip: You don’t have to navigate these shifts alone. Tracking your body’s changes, pacing your energy, and leaning on your care team can help you feel more confident in this new landscape.

Body Image

Weight changes are a normal part of life with CF, especially with modulators or improved health. You might notice your body looks or feels different, clothes fit differently, or people comment on your appearance. These shifts can be confronting, even when they reflect progress.

A focus on weight can influence confidence and self-esteem. Research has shown that adolescent girls with CF often report having significantly lower self-esteem and body image scores compared with their non-CF peers. However, body image concerns are not limited to girls. Clinicians are reporting increasing concerns about body image and disordered eating behaviours among adolescent boys with CF, particularly in relation to weight gain and body composition changes. When weight gain does not align with expectations around muscle or physical appearance, this can lead to distress and, in some cases, unhealthy patterns such as excessive exercise, rigid calorie tracking, or restrictive eating.

Many people with CF experience ups and downs in how they relate to their body over time. You’re not alone if your relationship with your body feels complicated. Many people with CF describe feeling proud of their body one day and frustrated the next, and both can be true. Feeling uncomfortable doesn’t mean you’re ungrateful for your health; it just means you’re human.

Ways to Build a Healthier Body Relationship

Living with CF adds extra layers to body image. Between weigh-ins, bloating, feeding tubes, port scars, and eating differently from friends, your body has been through a lot. It deserves respect for everything it’s done to get you here.

Here are a few ways to support a healthier relationship with your body:

Talk about it

Opening up to someone who understands CF, like a psychologist, social worker, dietitian, or peer can help you make sense of mixed feelings. Body image concerns are common in CF, and talking about them doesn’t make you ungrateful or vain. It can also help to let your care team know whether you feel comfortable discussing weight or if you’d prefer those conversations to be handled differently. Having a say in how weight is talked about can make these discussions feel safer and more supportive.

Focus on what your body does, not just how it looks

Every breath, meal, or physio session is a reminder of what your body is capable of. Trust in its function and strength, not just its appearance.

Remember that your journey is different

People with CF experience body changes at different times and in different ways. You may gain or lose weight faster or notice shifts in your shape due to treatments. These changes don’t make you less valid or less attractive.

Limit comparisons

It can be hard when your friends’ bodies don’t go through the same ups and downs. Try to keep perspective; your body has fought through things others can’t see.

Support and Resources

If you’re finding body image or eating difficult, there’s help available:

• Butterfly Foundation: Free helpline, online chat, and information on body image and eating concerns
• Body Kind: Practical tips for building body confidence
• CF Trust: Body Image and Cystic Fibrosis: Real stories and CF-specific advice
• The Body Positive and Be Nourished: Programs promoting self-compassion and body trust

Watch: Dove Real Beauty Sketches – not CF-specific, but a good reminder that how we see ourselves often differs from how others see us.