Ehlers-Danlos Syndromes (EDS) are inherited disorders affecting connective tissues, which provide support and structure to organs, skin, joints, and blood vessels. An “EDS flare” is a period where symptoms significantly increase or worsen beyond an individual’s typical baseline. This intensification can profoundly affect daily life, presenting a complex array of sensations. Understanding a flare involves recognizing both localized physical sensations and broader systemic impacts.
Core Physical Sensations
During an EDS flare, joint pain often intensifies, presenting as an aching, sharp, or burning sensation deep within the joints. This discomfort is frequently disproportionate to any visible injury, reflecting underlying connective tissue laxity. Joint instability can be profound, with subluxations (partial dislocations) or full dislocations contributing to acute pain and a sense of looseness.
Muscles surrounding unstable joints may become chronically tense and develop knots or spasms, as they attempt to compensate for the lack of structural support. This often manifests as a constant, deep ache, sometimes described as muscles feeling “on fire” or perpetually tight. The body’s widespread connective tissues can also contribute to widespread body aches and tenderness to touch, alongside a pervasive sensation of “looseness” or “fragility.”
Beyond the musculoskeletal system, nerve-related sensations can emerge or worsen during a flare. Individuals might experience numbness, tingling, or burning sensations in various parts of the body. These neuropathic feelings contribute to the overall physical burden.
Systemic Symptoms
An EDS flare extends beyond localized physical sensations, manifesting as a whole-body experience with significant systemic symptoms. Profound fatigue is a hallmark, described as an overwhelming exhaustion that is not alleviated by rest, distinct from normal tiredness, making even simple tasks feel monumental.
Cognitive dysfunction, often called “brain fog,” commonly accompanies flares, creating a mental cloudiness. This involves difficulty concentrating, impaired memory, and slowed processing speed. This mental fatigue can be as debilitating as the physical exhaustion, impacting communication and daily functioning.
Autonomic dysfunction, or dysautonomia, can also intensify, leading to sensations such as heart rate fluctuations, dizziness upon standing, and lightheadedness. Individuals may experience palpitations or nausea. These symptoms can exacerbate feelings of vulnerability and make standing or moving difficult.
Gastrointestinal distress frequently intensifies during a flare, causing feelings of abdominal pain, bloating, and altered bowel habits, ranging from constipation to diarrhea. These digestive issues add to the overall discomfort and can make eating challenging. Other systemic feelings might include heightened sensitivity to light, sound, or touch, along with headaches or a general malaise.
The Unpredictability and Course of a Flare
The experience of an EDS flare is often characterized by its unpredictability, influencing how it feels over time. Flares can begin suddenly, with an abrupt onset of intensified symptoms, or they may build gradually over hours or days. This variability in onset means an individual might wake up feeling “hit by a truck” or experience a slow, creeping escalation of discomfort.
The intensity of symptoms can fluctuate significantly, not only from one flare to another but also within a single flare, varying day by day or even hour by hour. This creates a sense of uncertainty, as the severity of pain, fatigue, or other symptoms can shift unexpectedly. The duration of flares is equally variable, lasting from a few days to several weeks or even months, contributing to a feeling of being trapped in a prolonged period of increased suffering.
A flare represents a significant departure from an individual’s “normal” baseline level of chronic symptoms. It feels like being substantially worse than usual, with typical daily challenges becoming overwhelming obstacles. While specific triggers are not always identifiable, factors like stress, illness, physical overexertion, or even weather changes can initiate a flare, adding to the feeling of vulnerability and a perceived lack of control over one’s body.
Coping with a Flare
Coping with an EDS flare often begins with prioritizing rest and pacing activities to avoid further exacerbating symptoms. Listening to the body’s demands for rest and consciously reducing physical and mental exertion can help manage the heightened discomfort. This involves accepting the need to “give in” to the body’s limitations during these periods.
Symptom management during a flare typically involves general comfort measures. Applying gentle heat or cold to affected areas can provide some relief from muscle and joint pain. Over-the-counter pain relief, if appropriate and approved by a healthcare provider, may also be considered to help manage increased discomfort.
Seeking support from healthcare providers is important for guidance on managing flare symptoms. Connecting with family, friends, or support groups can also provide emotional and practical assistance during these challenging times. Sharing experiences with others who understand can alleviate feelings of isolation.
It is important to recognize when a flare warrants immediate medical attention. Clear guidelines for seeking professional consultation include the development of new, severe symptoms, an inability to manage pain despite self-care measures, or a significant decline in functional abilities. Prompt communication with healthcare professionals ensures appropriate and timely intervention.