Ehlers-Danlos Syndrome (EDS) is a group of inherited disorders affecting connective tissue, which provides structure and support to skin, joints, and organs. These conditions arise from genetic defects that impair the production or processing of collagen, the body’s most abundant protein. For most individuals living with EDS, chronic, persistent pain is a defining symptom that significantly impacts daily life. This discomfort is complex, arising from mechanical failure and altered pain signaling pathways.
The Underlying Cause: Pain from Joint Instability
The primary source of chronic pain in EDS stems from the collagen defect, which makes connective tissues abnormally lax. Ligaments and tendons are overly flexible and fail to provide adequate stability, resulting in chronic joint instability. This causes bones to frequently shift or move beyond their normal range of motion.
The constant laxity forces surrounding muscles to work overtime to stabilize the loose joints, leading to muscle fatigue and tension. This ongoing mechanical strain generates continuous microtrauma to soft tissues, including joint capsules and tendons. The resulting irritation creates a chronic, low-grade inflammatory response that generates persistent pain signals. This discomfort is often felt deep within the body, localized around mobile joints like the shoulders, hips, and knees.
Types of Chronic Pain Sensation
The daily experience of EDS pain is a combination of sensations, often categorized into musculoskeletal and neuropathic types. Musculoskeletal pain is the most commonly reported experience, manifesting as a deep, constant ache or throbbing sensation in the muscles and joints. Patients describe muscles as perpetually strained, stiff, or knotted, related to the compensatory effort required to maintain joint stability.
This discomfort can migrate across the body, causing general tenderness and easy fatigability. Neuropathic pain is distinct and arises from irritation or compression of the nerves. Unstable joints or discs can intermittently pinch a nerve, leading to sensations described as burning, electrical shocks, or shooting pain. Numbness or tingling (paresthesia) may also occur, indicating nerve involvement where pain is generated by abnormal signaling within the nervous system.
Acute Pain Events: Subluxations and Dislocations
In contrast to the daily chronic ache, acute pain in EDS is sudden, sharp, and intense, associated with a specific joint event. These events include subluxations (a joint partially slipping out of place) and full dislocations (bones completely separating from the joint socket). The sensation at the moment of injury is often described as tearing, popping, or grinding, followed by blinding, high-intensity pain.
The immediate pain results from sudden trauma to the joint capsule, ligaments, and surrounding soft tissues as the bone displaces. A subluxation can be just as painful as a full dislocation because joint components are forcefully stretched and damaged before the bone snaps back or is repositioned. This acute pain is episodic but can leave increased soreness and inflammation, adding to the chronic pain burden following the event.
Systemic Pain and Associated Sensitivities
Beyond immediate joint issues, many people with EDS experience widespread, systemic pain involving a heightened sensitivity of the nervous system. This phenomenon, known as central sensitization, means the body’s pain alarm system is essentially turned up too high. As a result, non-painful stimuli, such as light touch or temperature changes, can be perceived as painful, a condition called allodynia.
This generalized hypersensitivity is compounded by the frequent overlap of EDS with other chronic pain conditions, such as Fibromyalgia. This co-occurrence can lead to widespread, persistent tenderness across the body, sometimes described as feeling constantly “flu-like” or bruised. Intractable head and neck pain, including chronic migraines, are also a common part of the systemic pain experience, often linked to structural instability in the cervical spine. This overall burden adds a significant layer to the daily pain felt by individuals with EDS.