Is it advisable to do exercise when affected by Febrile infection-related epilepsy syndrome - FIRES? Which activities would you suggest and how intense should they be?

Physical activity is generally recommended for individuals recovering from Febrile infection-related epilepsy syndrome (FIRES), provided it is approached with extreme caution and under direct medical supervision. While exercise can help rebuild strength and improve mood, it must be carefully paced to avoid triggers like physical exhaustion or overheating, which can exacerbate seizure thresholds in those with Febrile infection-related epilepsy syndrome.

Is exercise safe for those living with FIRES?

For patients navigating the aftermath of Febrile infection-related epilepsy syndrome, exercise is not contraindicated, but it must be personalized. Because FIRES often results in significant physical deconditioning and neurological fatigue, any return to activity should be gradual. Exercise can be highly beneficial for cardiovascular health, bone density, and emotional well-being, but the intensity must remain low to moderate to prevent metabolic stress.

What types of activities are recommended for FIRES patients?

When starting an exercise program after a diagnosis of Febrile infection-related epilepsy syndrome, prioritize low-impact, supervised movements. Activities that are safer include:

• Gentle walking: Best performed in a climate-controlled environment to avoid overheating.


• Restorative Yoga: Focuses on flexibility and breathwork without high-intensity cardiovascular strain.


• Supervised Physical Therapy: Targeted strengthening exercises to address muscle atrophy caused by prolonged hospitalization.


• Stationary recumbent cycling: Provides a stable, seated position to minimize fall risks.

Which activities should be approached with caution?

Due to the unpredictable nature of seizure activity in Febrile infection-related epilepsy syndrome, certain activities carry higher risks. Avoid contact sports, swimming alone, heavy weightlifting, or any activity performed at high altitudes or in extreme heat. Always ensure that someone is aware of your activity level and that you have a safety plan in place should a seizure occur during exercise.

How can you safely adapt exercise on difficult days?

Listen to your body's signals. If you are experiencing increased seizure frequency or heightened fatigue, use "pacing strategies" such as shortening your session, reducing resistance, or opting for light stretching instead of aerobic movement. Consistency is more important than intensity when managing the long-term recovery from Febrile infection-related epilepsy syndrome.

Next steps

• Consult your neurologist to receive formal medical clearance before starting any exercise routine.


• Request a referral to a physical therapist who has experience working with patients recovering from complex neurological conditions.


• Connect with the 65 members of our DiseaseMaps community to discuss how others manage physical activity while living with FIRES.

Medical disclaimer: This information is for educational purposes only and does not replace professional medical advice, diagnosis, or treatment.

References

• NIH Genetic and Rare Diseases Information Center (GARD)


• Orphanet: Febrile infection-related epilepsy syndrome (ORPHA:261399)


• The NORSE Institute (New-Onset Refractory Status Epilepticus and FIRES)


• Epilepsy Foundation: Managing Exercise and Epilepsy