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Living with EDS Flare-Ups: Understanding, Coping, and Moving Forward

Writer's picture: Maya IllipseMaya Illipse


Living with Ehlers-Danlos Syndrome (EDS) often feels like walking a tightrope—balancing a daily routine only to be hit by an unexpected flare-up, throwing you off-balance. These flare-ups can feel like sudden storms, bringing pain, fatigue, or even anxiety when everything seemed calm moments before. They serve as a reminder that life with EDS is unpredictable, sometimes feeling beyond our control.


At Paramotion, we understand the complexities of EDS firsthand. Our mission is to help you navigate these challenges with personalized movement therapies designed specifically for EDS and related conditions. Below, we’ll explore why flare-ups happen, how to identify triggers, and effective coping strategies that can help during difficult days.


Why Do Flare-Ups Happen?


Flare-ups involve a temporary increase in symptoms, and for those with EDS, they’re a common reality. While they look different for everyone, flare-ups generally bring more pain, fatigue, or other EDS-related symptoms. Triggers can range from physical and mental stress to hormone shifts (see out post about PMDD) or weather changes (see our post about October slide). Some flare-ups last for days, while others might persist for weeks, but they do eventually settle back to baseline.


Initially, many of us think that flare-ups are solely caused by physical overexertion. However, as many discover, triggers can also include mental strain, emotional stress, major life events, or even something as unpredictable as a change in the weather.

While research is limited on the precise mechanisms behind flare-ups, those living with EDS know these experiences are real and, at times, debilitating.


Identifying Your Triggers


Understanding what brings on a flare-up can help you anticipate and manage them more effectively. For example, common triggers include:


  • Dysautonomia (like Postural Orthostatic Tachycardia Syndrome, or POTS): Triggered by heat, dehydration, or physical exertion

  • Mast Cell Activation Syndrome (MCAS): Triggered by allergens, certain medications, stress, or temperature changes

  • ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome): Symptoms can worsen after physical exertion, known as post-exertional malaise (PEM)

  • Sleep disturbances: Poor sleep can worsen pain, fatigue, and other symptoms

  • Hormonal changes: Many notice symptom increases during menstrual cycles, menopause or postpartum

  • Stress: Physical and emotional stress impact the nervous system and can increase inflammation, exacerbating symptoms


Managing the Emotional Toll of Flare-Ups


Flare-ups don’t just take a physical toll—they can feel frustrating and disheartening. During these moments, it’s easy to feel guilty or even defeated, but it’s crucial to remember that flare-ups are not your fault. Experiencing a flare-up does not mean you’ve regressed or failed; it’s a part of living with a complex condition.


When a flare is looming, the natural reaction may be to question what caused it. However, stressing about it can worsen the symptoms, leading to a negative cycle. Instead, try to respond with kindness. Remind yourself, “This too shall pass,” as Helene, one of our community members, advises. She says, "Flares are disheartening. Even though I know they’re part of life with this condition, I remind myself: this will pass."


Tips for Coping with a Flare-Up


When a flare-up hits, meeting your basic needs is the first priority. Here’s how you can manage:


1. Meet Basic Needs
  • Ensure adequate nutrition, hydration, and rest.

  • Good sleep hygiene is especially vital during a flare-up; prioritize a restful environment and gentle, calming activities before bed.


2. Rest as Needed
  • Proactive rest is essential. Allow yourself recovery time without guilt. Resting is an investment in your well-being.


3. Stay Active, But Gently
  • Gentle movement, even if it’s light stretching or bed exercises, helps maintain blood flow and reduces discomfort.

  • Paramotion’s programs offer gentle, structured activities tailored to help manage EDS/HSD symptoms, ensuring movements that support your body, not stress it.


4. Engage in Sensory Calming Techniques

Managing pain can feel all-consuming, and for many people, sitting still in traditional mindfulness isn’t the ideal approach. Instead, try sensory-focused strategies that can help calm the nervous system while reducing the need for complete stillness:

  • Practice breath-centered movement like gentle stretches, slow-flowing exercises, or yoga poses that keep the body moving while incorporating deep breathing.

  • Engage the senses in grounding activities, such as listening to soothing or rhythmic music, holding a warm drink, using a textured or weighted blanket, or even lighting a favorite candle—anything that helps redirect focus in a comfortable, grounding way.

  • Experiment with mindfulness exercises that resonate, such as short guided meditations, sensory walks, or even apps that focus on reducing stress through mindful movement.


6. Prepare a Flare Toolkit
  • In times of severe pain, it’s easy to forget what brings relief. Keep a list of favorite soothing activities, pain-relief techniques, or self-care practices on your phone so it’s easy to access during flare-ups.


7. Practice Self-Compassion
  • Remind yourself that flare-ups are temporary, and it’s okay to rest. Ask yourself how you’d treat a friend going through this experience and offer yourself the same kindness.


Moving Forward with Paramotion’s Support


Living with EDS is a journey that requires patience and compassion, and at Paramotion, we’re dedicated to supporting your path toward resilience. We provide tailored movement therapies designed for EDS/HSD, and associated conditions like MCAS and POTS, combining science-backed techniques with gentle care. Our goal is to help you manage symptoms, build body awareness, and improve quality of life—through good times and flare-ups alike.

Explore Paramotion’s programs to find gentle, EDS-friendly movement therapies and join a supportive community that understands your journey. We’re here to help you live with more ease, connection, and confidence. Book your Free 15 mn call here!!

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