# Nutrition and diets in FSHD
Nutrition plays a supportive role in facioscapulohumeral muscular dystrophy (FSHD). Because the disease affects muscles and the body requires extra energy and recovery processes, research focuses on substances that can support muscle function or reduce inflammatory processes. Below is what is being investigated and what is known about it.
Antioxidant supplementation
ResearchediPositive results in clinical studies, not yet standard treatment
This concerns vitamins and minerals that can neutralize harmful free radicals in cells: vitamin C, vitamin E, zinc, selenium and similar substances. In FSHD, much oxidative stress occurs in muscle tissue — the body becomes imbalanced between harmful substances and the body's defense against them. Antioxidants can provide counterbalance here.
A 2015 study tested vitamin C, vitamin E, zinc and selenium in patients with FSHD. Participants who received these vitamins and minerals showed improvements in certain markers of muscle exhaustion and oxidative stress, although the differences were modest.
Recently (2026), researchers investigated 'personalized' antioxidant supplementation — adjusted to what the individual body needs. In this study, conducted in practice, patients saw improvement in muscle strength, physical activity and quality of life. This suggests that individual tailoring may provide benefits, but this study is still small and needs to be confirmed.
Risks are known: some antioxidants can interfere with certain medications in high doses or have adverse effects. This should always be discussed with your treating physician or dietitian.
Creatine monohydrate
ResearchediPositive results in clinical studies, not yet standard treatment
Creatine is a natural substance in muscle tissue that helps produce energy. It is also given as a supplement in some muscle diseases. In FSHD, creatine was investigated because it might help muscles retain more strength.
A multicenter study from 2025 tested creatine monohydrate in children with FSHD in a well-designed study (double-blind, placebo-controlled). This is relatively recent, rigorous evidence. Results have yet to be published more fully, but initial signals suggest that creatine may have an effect on motor functions.
Earlier research (2009) also mentioned creatine as a possible supporting substance in neuromuscular disorders. Side effects are generally rare, but fluid retention and kidney function can be affected; this requires supervision.
Protein-rich diet and amino acids
ResearchediPositive results in clinical studies, not yet standard treatment
Muscle tissue depends on proteins and amino acids. In FSHD, muscle loss is progressive, so the body benefits from adequate protein support. Research suggests that patients with FSHD sometimes have mildly undernourished muscles — not necessarily because they eat less, but because their body processes nutrients with difficulty.
A 2023 study examined the nutritional status of FSHD patients. Although not all patients had deficiencies, certain groups were more vulnerable. This calls for regular monitoring.
When someone has difficulty chewing or swallowing (because facial muscles weaken), food intake automatically decreases. In such cases, enriched or pre-chewed food, and sometimes nutrition via a feeding tube, may be necessary. This should be discussed with a dietitian.
Omega-3 fatty acids
ResearchediPositive results in clinical studies, not yet standard treatment
Omega-3 fatty acids (from fish, flaxseed, walnuts) have anti-inflammatory effects. Because inflammatory processes play a role in FSHD muscles, researchers investigated whether omega-3 could relieve symptoms.
A small-scale study (2019) combined flavonoids (plant substances) with omega-3 in a supplement and tested it in muscle diseases including relevant forms of dystrophy. Safety and initial indications of efficacy were observed, but the study was pilot-format — so modest in scope.
Recent research (2025) on nutritional interventions in FSHD emphasizes that omega-3 and other anti-inflammatory dietary choices are promising, but are not yet recommended as standard.
Flavonoids and plant-based substances
ExperimentaliOngoing in study setting, outcome still unknown
Flavonoids are pigments in vegetables, fruits and herbs with anti-inflammatory and antioxidant effects. In FSHD the interest is justified: because the body experiences additional oxidative stress, plant-based substances could theoretically help.
A 2021 review article described promising perspectives for "nutraceuticals" (nutrients with medicinal effects) and plant extracts in FSHD. However, concrete effects have been demonstrated only to a limited extent. Studies are mostly small or in animal models.
Eating plenty of vegetables, fruits and herbs is generally safe and can be part of nutrition, but specific extracts or supplements based on these should be approached with caution — not all combinations have been equally well researched.
Vitamin details: Folic acid
ResearchediPositive results in clinical studies, not yet standard treatment
Folic acid (vitamin B11) plays a role in cell renewal and energy. Research (2023) into gut flora and nutrition suggests that folic acid and certain gut bacteria work together in metabolism. This could be relevant for weight management and muscle composition.
In FSHD this has not been directly investigated, but the biological mechanisms are indications that folic acid is not insignificant — particularly if the diet contains fewer vegetables or if someone has gastrointestinal problems.
Iron
ExperimentaliOngoing in study setting, outcome still unknown
Iron is needed for oxygen transport in muscles. Animal studies (2025) showed that iron supplementation can alleviate certain pathological processes in FSHD models. However, this has not yet been investigated in patients.
Iron supplementation without medical indication can be harmful (iron accumulation in organs), so this requires professional guidance in all circumstances.
Energy requirements and calorie intake
ResearchediPositive results in clinical studies, not yet standard treatment
Research into basal metabolism (2021) showed that adults with FSHD have a variable pattern: some have higher, others lower energy expenditure than healthy peers. This varies per person and is related to how much active muscle tissue remains.
This means there is no standard diet for FSHD — one person may need more calories to maintain weight, another may need less. This requires individual evaluation.
When nutrition is provided via a feeding tube (in case of severe chewing or swallowing difficulties), calorie needs and nutrient composition are carefully adjusted to the individual situation.
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Dietary choices in FSHD are tailored to the individual. Although research shows that antioxidants, creatine and protein are promising, not everything works for everyone, and supplements can interfere with medications or your specific situation. Your healthcare provider or a dietitian specializing in neuromuscular diseases can help you establish a nutritional pattern that suits your body, your disease stage and your treatment. Regular monitoring of nutritional status — especially if chewing or swallowing difficulties arise — prevents malnutrition and supports muscle strength.
_This information never replaces a doctor's judgment. Always discuss your situation with your own healthcare provider._