Ehlers-Danlos Syndromes (EDS) are a group of inherited disorders that affect the body’s connective tissues, which provide structure and support to the skin, joints, blood vessels, and organs. A “flare” is a temporary but significant period during which the baseline symptoms of the syndrome intensify severely, often affecting multiple body systems simultaneously. Understanding the subjective experience of an EDS flare means moving beyond the chronic, daily discomfort to the acute, body-wide escalation of symptoms. This escalation profoundly affects daily function.
The Musculoskeletal Pain Experience
The most immediate and overwhelming feeling during an EDS flare is often a drastic increase in musculoskeletal pain. This discomfort is complex and multifaceted, frequently described as feeling disproportionate to any visible injury or strain. The pain can manifest as a deep, relentless ache, often feeling bone-deep or like an internal pressure suggesting severe, rapid-onset arthritis.
Alongside the aching, individuals frequently experience sharp, shooting pain. This sensation results from the constant, involuntary effort of muscles trying to compensate for loose joints. These muscles become overworked and spasm, leading to cramping or seizing up, which feels like a relentless twisting or tightening in the limbs.
The pain is often migratory, moving unpredictably throughout the body and intensifying in different joints or muscle groups. This systemic overload can also lead to a sensation of tissue inflammation and burning, sometimes described as “fire skin.” During a flare, even light touch can cause significant discomfort.
Sensations of Joint Instability
A flare profoundly heightens the mechanical feeling of joint instability, a hallmark of EDS. Joints that are normally hypermobile begin to feel acutely “loose” or “slippery” as the supporting connective tissues become even more lax. This increased laxity leads to a sensation of impending or actual mechanical failure.
Individuals report a sudden, jarring shift, pop, or grinding feeling that signals a partial dislocation, known as a subluxation. These events become more frequent and can be triggered by minimal provocation, such as rolling over in bed or making a small, uncoordinated movement. The joint instability also severely compromises proprioception, which is the body’s sense of where its limbs are in space.
This loss of positional awareness can make movements feel clumsy or uncoordinated, requiring intense mental effort to perform routine tasks like walking or standing. The constant effort required to hold joints in place causes surrounding muscles to fatigue rapidly, leading to noticeable weakness and trembling. This weakness is a consequence of muscles constantly working overtime to provide stability.
Systemic and Autonomic Feelings
A severe EDS flare is not limited to the musculoskeletal system; it is a full-body event involving significant systemic and autonomic distress. One of the most pervasive sensations is profound, all-consuming fatigue, which is distinctly different from simple tiredness. This is often described as a “bone-crushing” or “leaden” exhaustion that compromises all cognitive and physical function, making even simple tasks feel monumental.
Cognitive dysfunction, often called “brain fog,” is a parallel sensation of mental slowness and impairment. This feels like an inability to concentrate, difficulty with word retrieval, and a general mental cloudiness that makes processing information slow and frustrating. This cognitive struggle is a significant part of the overall feeling of being unwell.
Many flares are accompanied by intensified autonomic symptoms, especially those linked to conditions like Postural Orthostatic Tachycardia Syndrome (POTS), which frequently co-occurs with EDS. These sensations include heart palpitations, a rapid heart rate, and dizziness or lightheadedness that worsens upon standing. Gastrointestinal distress also intensifies, often presenting as acute nausea, intense cramping, or severe bloating, reflecting the connective tissue involvement in the digestive tract.
The Trajectory of a Flare
The experience of a flare follows a distinct trajectory, beginning with subtle warning signs that deviate from an individual’s baseline state. These initial feelings might include increased stiffness in certain joints, a sudden drop in energy levels, or the onset of an uncharacteristic headache. For some, a low-grade fever or an increase in minor symptoms like bruising or bloating signals the impending escalation.
Once the flare reaches its peak intensity, the feeling is one of being completely disabled or bedridden. This peak state can last for a highly variable duration, ranging from a few days to several weeks or even months, depending on the severity and the underlying trigger. Triggers can include physical overexertion, hormonal shifts, or an acute illness.
The resolution of a flare is typically a slow process. The feelings of pain and systemic distress gradually dissipate, but this return to baseline is often accompanied by a lingering, deep residual exhaustion. This final stage underscores the systemic toll the flare has taken, requiring time for the body to recover its lost energy and stability.