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What are the signs and symptoms of EDS?

Research and medical history of patients with EDS are showing that Ehlers-Danlos Syndrome is a multi-systemic condition. That means that each type of EDS can affect multiple systems in the body, and there is an enormous spectrum of signs and symptoms that can present. There are also various comorbid conditions that are associated with Ehlers-Danlos Syndrome. However, a good majority of those with EDS have some joint and skin involvement that can be noted clinically – see examples below.

Joints:

– Joint hypermobility (I.e., Joints that move outside the normal range of motion. However, joint hypermobility is not always apparent in all joints, such as the pelvis).

– Loose/unstable joints (I.e., Causing clumsiness, lack of innate sense of balance or coordination, ankle instability, shoulders that seem to roll forward & more).

– Prone to dislocations and subluxations

– Joint pain

– Early onset of osteoarthritis.

Skin:

– Bruises easily

– Fragile skin (I.e. tears easily)

– Stretch Marks

– Soft velvet-like skin

– Skin hyperextensibility (can be stretched and then seems to snap back into position)

– Severe or unusual scarring

– Poor wound healing or wounds heal slowly

– Molluscoid Pseudo Tumors (fleshy lesions associated with scars over pressure areas, such as knees and elbows)

Additional Signs and Symptoms:

– Musculoskeletal pain that can be chronic and debilitating (i.e., Muscle Spasms and Fibromyalgia like pain)

– Growing pains and early onset of musculoskeletal pain

– Various & chronic gastrointestinal issues

– Chronic Fatigue

– Cognitive issues (I.e., ADD, ADHD, “Brain Fog,” learning disabilities, Autism & more)

– Chronic headaches & migraines

– Arterial and organ fragility or rupture (usually associated with the Vascular Type)

– Scoliosis

– Allergies of various kind (I.e. Food, insect, seasonal, skin, medications & more)

– Scleral fragility (white of the eye)

– Poor muscle tone

– Mitral valve prolapse & other cardiac issues (I.e. Arrhythmias)

– Gum disease

– Chronic Pelvic Pain, pregnancy-related complications & misc. Gynecological issues in women (I.e. Pelvic Floor Instability, Pelvic Congestion Syndrome, Interstitial Cystitis & more)

– Vision issues (I.e. Strabismus, Amblyopia & more)

– POTS & other Autonomic Dysfunction issues

– Auto-Immune Issues

– Sensory issues, such as Sensory Processing Disorder (also can be related to Cognitive issues)

Ehlers-Danlos Support UK provides a great explanation of EDS and why there are such varying degrees of severity and symptoms in those with EDS:

“Each type of EDS is defined as a distinct problem in making or using one of the types of collagen. Collagen is what the body uses to provide strength and elasticity to tissue; normal collagen is a strong protein that allows tissue to be stretched but not beyond its limit, and then safely returns that tissue to normal. Collagen is found throughout the body, and EDS are a structural problem. An analogy: If one builds a house with bad materials, with cheap nails or only half the wood required, problems will arise. Some problems are more likely to show up than others, but because the bad or missing materials are everywhere and not necessarily visible, one can be surprised where some problems occur.

It is much the same thing with EDS and collagen. The collagen with which a person with EDS is built is not structured the way it should be, or only part of it is produced. With a badly built or processed collagen, the tissue that relies on it can be pulled beyond normal limits and thus be damaged. Collagen is the most abundant protein in the body and types of collagen can be found almost anywhere: in skin, muscles, tendons and ligaments, blood vessels, organs, gums, eyes, and so on.

The problems resulting from one’s body being built out of a protein that behaves unreliably can be widespread, in a wide range of severities, and show up in places that seem unrelated until the underlying connection to EDS is recognized.”

How is EDS diagnosed?

To diagnose Ehlers-Danlos Syndrome/Joint Hypermobility, physicians use the Beighton Score to assess joint hypermobility; however, a high Beighton score by itself does not mean that an individual has an Ehlers-Danlos Syndrome. Other symptoms and signs also need to be present, which is why physicians also incorporate The Brighton Criteria.

Also, if someone scores lower on Beighton Score, they should be assessed further because hypermobility can be present at some sites that are not counted in the Beighton score. For example, the pelvis, hips, jaw (I.e., TMJ), neck (cervical spine), shoulders, mid (thoracic) spine, lower spine (lumbar), hips, ankles, and feet.

To learn more about how Ehlers-Danlos Syndrome is diagnosed, go here and to learn more about the different signs and symptoms of Ehlers-Danlos Syndrome/Hypermobility Syndrome, see links below.

Additional links: 

– Ehlers-Danlos National Foundation (EDNF) – “What is EDS?”

– Hypermobility Association – “Help & Advice” page

– Ehlers-Danlos Support UK – “Types of EDS” page