EDS Flare Ups

Ehlers-Danlos Syndrome (EDS) presents unique challenges, especially during flare-ups, which are periods of intensified symptoms. These episodes can range from joint pain to fatigue and digestive issues, deeply affecting daily life and emotional well-being. Understanding what causes EDS flare-ups and how to manage them can be transformative in living with this condition.

What is an Ehlers-Danlos Flare-Up?

An EDS flare-up is typically a temporary increase in symptoms that may vary significantly from one person to another. Because Ehlers-Danlos Syndrome affects connective tissue throughout the body, flare-ups can feel like a widespread increase in symptom severity. This means symptoms can emerge in various areas, such as the joints, gastrointestinal system, and even the nervous system. Flare-ups may last from a day to several weeks, depending on individual triggers and management strategies.

Common Symptoms of EDS Flare-Ups

During an EDS flare-up, individuals may experience:

• Increased Pain: Musculoskeletal pain intensifies, often with muscle spasms and joint discomfort.
• Joint Instability: Flare-ups can lead to more frequent joint dislocations or subluxations, with symptoms like sudden pain, joint locking, and a sensation of looseness.
• Fatigue and Brain Fog: Severe fatigue and cognitive difficulties, sometimes called “brain fog,” are common symptoms of EDS flare-ups.
• Digestive Issues: Symptoms such as acid reflux, constipation, or irritable bowel syndrome (IBS) often worsen during flare-ups. Some may even experience the discomfort of gastroparesis flare-ups, which is a slowing of stomach emptying.
• Neurological Symptoms: Headaches, dizziness, and heightened pain sensitivity are also frequently reported during these flare-ups.

What Causes EDS Flare-Ups?

What triggers EDS flare-ups? Many factors can contribute to the onset of an EDS flare-up, including:

• Physical Overexertion: Strenuous activities or staying in one position for too long can strain connective tissues, leading to hypermobility flare-up symptoms.
• Weather Changes: Shifts in barometric pressure, temperature, or humidity are known to affect joint pain and stiffness, often leading to flare-ups due to weather.
• Hormonal Fluctuations: Hormonal changes, such as those during menstruation, pregnancy, or menopause, may increase joint laxity and pain. Individuals may wonder how long hormone-related flare-ups can persist.
• Stress: Both physical and psychological stress can worsen EDS symptoms, likely due to heightened muscle tension and inflammation. Stress is also closely linked to nervous system activity, often contributing to flare-ups.
• Sleep Disturbances: Poor sleep often correlates with increased pain and fatigue, creating a vicious cycle of EDS pain worse at night.
• Co-Occurring Conditions: Conditions such as dysautonomia, Mast Cell Activation Syndrome (MCAS), and Postural Orthostatic Tachycardia Syndrome (POTS) often accompany EDS, each with its potential for triggering flares. A POTS flare-up may involve dizziness, heart palpitations, or fainting, adding complexity to managing EDS.

Managing EDS Flare-Ups

Learning how to get through an EDS flare-up can help reduce the frequency and severity of symptoms. Here are some tried-and-true strategies for managing EDS flares:

Pain and Symptom Management

• Medication: Over-the-counter or prescribed medications, including NSAIDs, may help with pain. However, some individuals with EDS may find pain flare-ups after fever or illnesses.
• Topical Treatments: Creams containing magnesium or CBD can offer localized relief for muscle tension or inflammation.
• Icing and Heat Therapy: Alternating hot and cold applications can help manage inflammation and soothe muscle tension.

Physical Therapy and Gentle Exercise

• Low-Impact Movements: Gentle exercises, such as stretching, yoga, or swimming, help maintain joint stability without overexertion, reducing symptoms of EDS flare-ups.
• Movement Breaks: Taking regular breaks to stretch and adjust posture can prevent stiffness and pain associated with prolonged sitting.
• Strengthening Exercises: Gradual muscle strengthening under a physical therapist’s guidance can improve stability, which may reduce flare frequency.

Sleep Hygiene and Rest

• Prioritize Sleep: Quality sleep is essential for symptom management. Sleep disruptions are linked with symptom severity, especially for those who find EDS pain worse at night.
• Proactive Rest: Building rest periods into your day can help reduce the intensity of flare-ups.

Dietary Adjustments

• Hydration and Electrolytes: Proper hydration, with electrolyte supplements if necessary, is essential for managing symptoms like fatigue and dizziness, particularly for those experiencing POTS syndrome flare-ups.
• Anti-Inflammatory Diet: Incorporating anti-inflammatory foods, such as leafy greens and omega-3-rich sources, may help reduce systemic inflammation.

Mindfulness and Stress Reduction

• Mindfulness Practices: Techniques such as meditation, breathing exercises, and body scanning can reduce stress, which may ease physical symptoms.
• Self-Compassion: Self-compassion practices, like reframing negative thoughts and avoiding self-blame, can help manage the emotional toll of flare-ups.

Building a Support System

Managing EDS often requires a team effort. Healthcare providers familiar with EDS and related conditions can make a significant difference. Support groups, whether in person or online, provide valuable emotional support and practical tips.

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Living with EDS: Long-Term Management

Managing EDS over the long term involves an individualized approach. Regular, gentle movement can maintain muscle tone and flexibility, while practicing self-compassion and setting realistic goals can support mental well-being. Pacing activities throughout the day prevents overexertion, and open communication with loved ones about limitations can help prevent unnecessary stress and over-commitment.

Conclusion

While EDS flare-ups are often unavoidable, understanding their triggers and implementing proactive management strategies can help reduce their impact. Building a toolkit of effective coping strategies—whether physical, emotional, or practical—empowers individuals to take charge of their health and improves quality of life, fostering resilience in living with EDS.

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FAQ: Common Questions About EDS Flare-Ups

• What does an EDS flare-up feel like? An EDS flare-up can feel like a “body-wide escalation of symptoms,” where various symptoms intensify, such as joint pain, fatigue, dizziness, and digestive issues. The experience varies but often feels overwhelming and affects multiple body systems simultaneously.
• How long do EDS flare-ups last? The duration of a flare-up depends on the individual and their triggers. Some flares may last a day, while others can continue for several weeks. Triggers like hormonal fluctuations, physical stress, or illness may affect the length and severity of a flare.
• How long do EDS flare-ups last due to hormones? Hormonal changes, like those during menstruation, pregnancy, or menopause, can impact EDS symptoms, often leading to flare-ups that vary in duration. These hormone-related flare-ups may last a few days to several weeks, depending on the individual and any additional triggers. People who live with PMDD may experience extreme flare up associated with the menstrual cycle.
• What does a subluxation feel like in EDS? Subluxations, or partial joint dislocations, are common in EDS. They are often described as a sudden, sharp pain with a feeling of joint looseness or instability. Subluxations can become more frequent and pronounced during flare-ups due to increased laxity in connective tissues.
• What causes EDS flare-ups? Flare-ups can be triggered by various factors, including physical exertion, hormonal changes, stress, poor sleep, or weather changes. Co-occurring conditions like POTS or MCAS can also contribute to EDS flare-ups.
• How does hypermobility cause fatigue? Hypermobility can lead to fatigue because the muscles surrounding hypermobile joints must work harder to maintain stability. Over time, this extra effort can contribute to both physical and mental exhaustion.
• What can I do to manage an EDS flare-up? Managing a flare-up involves a combination of pain management, gentle movement, proper rest, hydration, and stress reduction techniques. Building a personal toolkit for flare-ups, like mindfulness practices and movement routines, can help.
• How does a POTS flare-up affect those with EDS? A POTS flare-up can lead to symptoms like dizziness, heart palpitations, and fainting spells, often triggered by dehydration, heat, or prolonged standing. For those with EDS, POTS symptoms can compound existing issues, making flares more challenging to manage.
• What can I do to prevent EDS flare-ups? Prevention includes pacing activities, maintaining a healthy diet, staying hydrated, practicing good sleep hygiene, and engaging in gentle, regular exercise to strengthen supporting muscles. Recognizing personal triggers is essential to avoid or minimize flare-ups.

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References:

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3. Seneviratne, S. L., Maitland, A., & Afrin, L. (2017). "Mast Cell Disorders in Ehlers–Danlos Syndrome." American Journal of Medical Genetics Part C: Seminars in Medical Genetics, 175C(1), 226–236. DOI: 10.1002/ajmg.c.31555​
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5. Henderson, F. C., Austin, C., Benzel, E., Bolognese, P., Ellenbogen, R., Francomano, C., ... & Voermans, N. (2017). "Neurological and spinal manifestations of the Ehlers-Danlos syndromes." American Journal of Medical Genetics Part C: Seminars in Medical Genetics, 175C(1), 195–211. DOI: 10.1002/ajmg.c.31551​
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