Short answer · Medically reviewed summary · Last updated: 2026-04-06
The primary clinical manifestations of Ehlers-Danlos syndromes (EDS) include joint hypermobility, skin hyperextensibility, and generalized tissue fragility, though symptoms vary significantly depending on the specific subtype. Common Clinical Features As a physician who has treated many patients with Ehlers-Danlos, I have observed that while the presentation is heterogeneous, most individuals experience musculoskeletal pain and recurrent joint subluxations. Skin in many Ehlers-Danlos patients is often soft, velvety, and prone to abnormal scarring or easy bruising.
36 people with Ehlers Danlos have shared their first-person experience on this question at DiseaseMaps.
Which are the symptoms of Ehlers Danlos?
Symptoms of Ehlers Danlos reported by real patients, from the most common to the most limiting, plus a medically reviewed summary with sources.
The primary clinical manifestations of Ehlers-Danlos syndromes (EDS) include joint hypermobility, skin hyperextensibility, and generalized tissue fragility, though symptoms vary significantly depending on the specific subtype.
Common Clinical Features
As a physician who has treated many patients with Ehlers-Danlos, I have observed that while the presentation is heterogeneous, most individuals experience musculoskeletal pain and recurrent joint subluxations. Skin in many Ehlers-Danlos patients is often soft, velvety, and prone to abnormal scarring or easy bruising. Early warning signs that warrant investigation include a history of "clumsiness" due to proprioceptive deficits, chronic fatigue, and joints that seem to "pop" or shift out of place during routine activities.
Symptom Variability and Daily Impact
The severity of Ehlers-Danlos is highly individual; one patient may have mild joint laxity, while another may face severe, debilitating chronic pain and orthostatic intolerance. Symptoms that most significantly impact daily quality of life include chronic fatigue, widespread musculoskeletal pain, and gastrointestinal dysmotility. Over time, the cumulative toll of joint instability can lead to early-onset osteoarthritis and increased physical limitations.
When to Seek Urgent Care
While many symptoms of Ehlers-Danlos are managed chronically, immediate medical attention is required for signs of vascular complications, such as sudden, unexplained severe abdominal, chest, or back pain, which could indicate a vascular rupture—a rare but life-threatening event primarily associated with the vascular subtype of Ehlers-Danlos. Additionally, sudden neurological deficits or severe, persistent headaches should always be evaluated promptly to rule out complications like cervical instability or intracranial hypotension.
Progression
The clinical course of Ehlers-Danlos is not always linear. While joint hypermobility may appear to decrease with age due to muscle stiffness and fibrosis, the associated chronic pain and systemic fatigue often become more pronounced, requiring proactive, multidisciplinary management strategies.
Medical Disclaimer: This information is for educational purposes only and does not constitute medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.
References
- NIH Genetic and Rare Diseases Information Center (GARD)
- Orphanet: The portal for rare diseases and orphan drugs
- The Ehlers-Danlos Society
- OMIM (Online Mendelian Inheritance in Man)
Posted Apr 11, 2017 by Montana 1670
Posted May 10, 2017 by April 100
Posted May 10, 2017 by stairphobe 3070
Posted May 25, 2017 by Maria 2051
Posted May 26, 2017 by Stephanie 800
Posted May 27, 2017 by Jude 2050
Posted May 27, 2017 by Ashley 950
The symptoms of these conditions can be debilitating. Chronic Fatigue is perhaps the 'worst' symptom in as much as it can be completely debilitating and severely limiting quality of life. Many EDS sufferers experience chronic fatigue without any diagnosis (or investigation) of comorbid neurological conditions and it is generally considered to be a symptom of EDS.
In addition, many with EDS suffer with POTS (Postural Orthostatic Intolerance) which some consider the worst symptom (subject to the intensity and frequency experienced).
The reality is that there is no way to give a comprehensive response to this question given the highly subjective and individualised nature of symptoms that differ from individual to individual.
Posted May 27, 2017 by Jay 201
Posted May 28, 2017 by Celi 2000
Posted May 31, 2017 by KathrynOConnor 2200
Learning to work with EDS ans MCAD has become my life.
Posted Aug 30, 2017 by Brenda 102
Posted Aug 30, 2017 by Jennifer Sanders 122
Posted Aug 31, 2017 by Jess Knowles 150
Posted Aug 31, 2017 by Lexie 100
Posted Sep 15, 2017 by Phyllis 150
Posted Sep 27, 2017 by Lbond94 4100
Posted Oct 6, 2017 by Amy 100
Posted Oct 6, 2017 by Sasha 2050
Posted Oct 6, 2017 by Zara 300
Bowel issues
Exhaustion
Posted Oct 7, 2017 by Sharon 7050
Posted Oct 7, 2017 by Brittany 500
Posted Oct 25, 2017 by Dolores 3050
loose joints (sublux, dislocations)
Arthritis
Muscle weakness
Profound fatigue
Skin folds on the eyes
Growths on pressure areas
Autonomic Dysfunction (Dysautonomia / POTS)
Pain
Mast Cell Disorders
Connective Tissue breakdown (Soft skin, tissue breakdown, tendon and ligament issues)
Hypermobile organs and veins
Bleeding issues (Von Willebrand)
Autism Spectrum
Autoimmune
Scoliosis
Occult Tethered Cord
Chiari Malformation
Anxiety
Dental issues
Fragile tissue
The first symptoms I would get rid of (the top three and the most debilitating)
Chronic Pain
Autonomic Dysfunction
Mast Cell Reactions
I do not wish to add milder symptoms in their place as I feel they should be completly removed all together.
However, since they can not be I would replace
Chronic Pain with typical pain from an overworked muscle as an example- that can heal (pain that has an end)
Or
proper knowledge and education of what pain is, types of pain, how each type is supposed to feel, what can be done to ease the type of pain you have, What NORMAL pain feels like to others - a goal to train the mind towards...so when a doctor asks where does it hurt', or 'describe your pain to me' a person with EDS can do that properly. As well - our own pain scale that we can show our doctors so they can follow and put in our files.
Posted May 11, 2018 by Izzy 600
Migrañas
Dolores articulares
Problema de visión
Dolores en los huesos
Deficiencia de las vitaminas más q nada la vitamina d
Fatiga
Problemas de espalda
Problemas de corazón
Taquicardia
Posted Jul 6, 2018 by Estefania 1150
Posted Mar 21, 2019 by pianocat_61 1400
Posted Sep 29, 2019 by Amy 13500
Joint hypermobility; loose/unstable joints which are prone to frequent dislocations and/or subluxations; joint pain; hyperextensible joints (they move beyond the joint’s normal range); early onset of osteoarthritis.
Soft velvety-like skin; variable skin hyper-extensibility; fragile skin that tears or bruises easily (bruising may be severe); severe scarring; slow and poor wound healing; development of molluscoid pseudo tumors (fleshy lesions associated with scars over pressure areas).
There are some symptoms that are more common in one type than the others. These can include:
Chronic, early onset, debilitating musculoskeletal pain (usually associated with the Hypermobility Type); arterial/intestinal/uterine fragility or rupture (usually associated with the Vascular Type); scoliosis at birth and scleral fragility (associated with the Kyphoscoliosis Type); poor muscle tone (associated with the Arthrochalasia Type); mitral valve prolapse; and gum disease.
Posted Mar 11, 2020 by MegTheMariner 1870
Most limiting: The fragility of the body causing injury, combined with slow healing leading to pain.
Symptoms to get rid of: Pain and slow healing. If either were gone it wouldn't be as bad.
Posted May 12, 2020 by Alex 3551
Posted Nov 19, 2021 by NuNu 2550
Posted Nov 28, 2022 by Taiy rinaldi-bull 600
Posted Mar 25, 2017 by Paula Lopez 1151
Fatigue
The dislocation/subluxation
Posted Aug 16, 2017 by Apolline 1205
The tiredness is virtually permanent
Posted Aug 17, 2017 by Sandrine 1790
Posted Aug 30, 2017 by Leilane 200
Joint pain
Muscle pain
Disorders proprioceptive
Sleep disorders
Parasthesies
Difficulties respiratory
Posted Aug 30, 2017 by Ehos 1050
Instability joint.
Heart problems and in internal organs.
Posted Aug 30, 2017 by Kayla Rarine 2000
