Ehlers-Danlos Syndromes (EDS) encompass a group of inherited disorders that affect connective tissues, which provide support and structure throughout the body. These tissues are found in skin, joints, blood vessels, and organs. An “EDS flare-up” describes a period when an individual experiences a notable intensification or emergence of symptoms beyond their usual baseline. This experience varies considerably among individuals due to the widespread nature of connective tissue in the body.
Key Physical Sensations During a Flare-Up
EDS flare-ups often bring significant physical discomfort. Pain can manifest as a deep, gnawing sensation or a twisting feeling in limbs. It may migrate across the body and intensify. Some also experience “fire skin,” a burning sensation.
Joint instability becomes more pronounced, leading to increased subluxations (partial dislocations) or dislocations. This can result in sudden, sharp pain, a feeling of joint looseness, or the joint locking. Muscles may also experience spasms or cramping, feeling like they are seizing up or vacuum-sealed. This muscle effort to maintain stability in loose joints contributes to weakness and fatigue. Additionally, fragile skin may show increased bruising or be more susceptible to tearing.
Non-Physical Symptoms and Systemic Impact
Beyond physical sensations, EDS flare-ups often bring non-physical and systemic symptoms that affect daily life. Profound fatigue is common, described as comprehensive exhaustion rather than typical tiredness. This deep fatigue can compromise cognitive function, making even simple tasks feel monumental.
Cognitive dysfunction, or “brain fog,” is another non-physical symptom. This mental cloudiness can involve difficulty concentrating, impaired memory, slower thinking, and trouble recalling words. Gastrointestinal issues are also intensified, including nausea, abdominal pain, acid reflux, constipation, or worsening irritable bowel syndrome (IBS) symptoms. Some individuals may experience gastroparesis, a slowing of stomach emptying.
Autonomic dysfunction, affecting involuntary bodily functions, can also worsen. Symptoms may include lightheadedness, dizziness, a rapid heart rate (palpitations), and problems with temperature regulation. Exercise intolerance is common, as dysautonomia can limit physical capacity. These systemic impacts reduce an individual’s ability to function and affect their well-being.
Understanding Flare-Up Duration and Triggers
The duration of an EDS flare-up varies, lasting from days to weeks or even months. Symptom intensity often correlates with flare duration, with more severe symptoms leading to longer periods. Recovery time is also influenced by how effectively management strategies are employed.
Many factors can trigger an EDS flare-up, though these are highly individual. Physical overexertion or prolonged static postures are common culprits, as is mental or emotional stress. Illnesses, such as infections or viral conditions, can also precipitate a flare.
Environmental factors like weather or barometric pressure changes are reported triggers for some. Hormonal fluctuations, particularly during menstrual cycles, pregnancy, or menopause, can increase joint laxity and intensify symptoms. Lack of quality sleep is another frequent trigger, often leading to increased pain and fatigue. Co-occurring conditions, such as Postural Orthostatic Tachycardia Syndrome (POTS) or Mast Cell Activation Syndrome (MCAS), can also drive flare-ups.
When to Consult a Healthcare Professional
Seek medical attention during an EDS flare-up if new or significantly worsening symptoms arise. This includes a sudden increase in severe pain that is unmanageable or different from typical pain. Signs of infection, such as fever accompanied by localized redness, swelling, or warmth, warrant prompt medical evaluation.
Any significant neurological symptoms, such as sudden weakness, numbness, tingling, or loss of control in a limb, should be addressed by a healthcare professional. Persistent high fever, uncontrolled vomiting, or diarrhea that could lead to dehydration are also reasons to seek medical care. Any symptom causing considerable concern, severe functional impairment, or deviating significantly from previous flare experiences should prompt communication with an EDS-knowledgeable care team.