Weird symptoms of Ehlers Danlos Syndrome that people may not recognize

Ehlers-Danlos Syndromes (EDS) are a group of heritable connective tissue disorders, characterized by a variety of symptoms due to the widespread nature of connective tissue in the body. While certain symptoms of EDS are well-documented and can be found through sources like Google, there are less commonly discussed symptoms that might not be as widely known. These include:

1. Neurological Symptoms: Including headaches, migraines, neuropathic pain, and cognitive difficulties such as "brain fog."
2. Dental Issues: Such as a high palate, overcrowded teeth, and periodontal disease.
3. Fatigue: Persistent and debilitating tiredness not related to physical activity levels.
4. Gastrointestinal Problems: Including food intolerances, reflux, and nutrient absorption problems, beyond common issues like irritable bowel syndrome (IBS).
5. Temperature Dysregulation: Difficulty regulating body temperature, leading to excessive sweating or intolerance to heat or cold.
6. Clumsiness: Frequent injuries and clumsiness due to problems with body awareness and spatial orientation.
7. Pelvic Floor Dysfunction: Weak connective tissues in the pelvic area leading to urinary incontinence or prolapse.
8. Non-Cardiac Chest Pain: Chest pain unrelated to heart issues, often leading to misdiagnosis.
9. Voice and Swallowing Difficulties: Various vocal issues or difficulty swallowing, related to connective tissue involvement in the throat and vocal cords.
10. Healing Abnormalities: Slow wound healing and atypical scar formation, known as atrophic scarring.
11. Flat Feet: Common in EDS due to lax tendons, potentially leading to conditions like plantar fasciitis.
12. Flexible Eyeballs: Changes in eye shape during conditions such as pregnancy, indicating potential future eye-related symptoms.
13. Scapula Quirk: Shoulder blades stick out from the back resembling wings in certain yoga poses due to joint flexibility.
14. Dislocated Joints in Everyday Activities: Including incidents like a dislocated shoulder during childhood activities.
15. Fainting Episodes: Collapsing in public due to severe stomachaches or other triggers.
16. Blue Lips and Hands: Symptoms of Raynaud’s disease, causing extremities to respond severely to cold.
17. Fragile Nails: Nails that break easily or bend painfully.
18. Low Blood Pressure: Head rushes due to orthostatic hypotension, necessitating a high salt diet.
19. Cracking Joints: Enjoying the sensation of cracking knuckles and experiencing constant near-cracking sounds in other joints.
20. Digestive Issues: Chronic stomach pain and complications from a young age.
21. Perpetual Fatigue: Chronic tiredness as a significant symptom.
22. Dysautonomia: Disorders of the autonomic nervous system, causing symptoms like difficulty in temperature regulation and increased heart rate upon standing.
23. Blue Sclera: The appearance of a blue ring around the eye due to thin connective tissue.
24. Mast Cell Activation Syndrome (MCAS): Excessive allergic-type responses leading to symptoms like rashes, flushing, and abdominal pain.
25. Irritation From Adhesives: Severe skin reactions to adhesives, leading to rashes or burns.
26. "Bad" Veins: Challenges with IV insertions due to vein fragility, often resulting in blown or collapsing veins.
27. Raynaud’s Syndrome: Narrowing blood vessels leading to reduced blood flow to extremities, causing cold feet, hands, and noses.
28. Soft, Delicate Skin: Exceptionally soft and delicate skin, often giving a youthful appearance.
29. Bruising in Unusual Places: Bruising easily, even from mild pressure or in unusual locations.
30. Hyperextension and Dislocation of Joints in Hands and Fingers: Dislocation or locking of smaller joints like fingers during everyday tasks.

It's important to note that the manifestation of EDS symptoms can vary significantly from person to person, and not all individuals with EDS will experience these less commonly discussed symptoms. Diagnosis and management should always be guided by healthcare professionals familiar with the complexities of EDS.

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Sources:

1. Frontiersin.org: "Uncommon association between vascular Ehlers–Danlos syndrome and ocular complications,"  Frontiers in Medicine, 2023, https://www.frontiersin.org/articles/10.3389/fmed.2023.1089652/full
2. PubMed Central (PMC): Ehlers Danlos Syndrome: An Unusual Presentation You Need to Know about" Amel Karaa, Joan M Stoler, 2013, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3670523/
3. PatientWorthy.com: "12 Things I Had No Idea Were Ehlers-Danlos Syndrome," Author's Name (if available), PatientWorthy, March 28, 2018, https://patientworthy.com/2018/03/28/12-things-i-had-no-idea-were-ehlers-danlos-syndrome-2/