Hypermobile EDS (hEDS)

Common Symptoms Reported

Pain: Widespread, chronic, does not correlate with seemingly “normal” imaging results

Sources of pain: Headache, neck, jaw, wrists, fingers, back, sacroiliac joint, hips, ankles, muscle spasms

Joint hypermobility: Unstable joints, systemic hypermobility, excess range of motion, frequent subluxation/dislocation, elbows “bend the wrong way”, able to do the splits as a child, “hitchhiker’s thumb”, can put palms flat on the floor without bending your knees

Skin manifestations: Soft skin, poor wound healing, abnormal scarring, abnormally stretchy skin, stretch marks, piezogenic papules

GI/Digestion: Constipation, poor motility, multiple food allergies/intolerances, pain with eating

Psychosocial: Disabling anxiety, depression, fear of getting hurt, feel discounted by MDs (experience medical gaslighting), fearful of starting PT because concerned it may flare symptoms, ADD/ADHD, ASD

Social: Socially isolated, can’t keep up with peers, difficulty holding job or going to school, fearful of committing to social outings for fear of needing to rest or not being able to fully participate

Neuro: Headaches, clumsiness, brain fog, unstable cervical spine (CCI/AAI), Chiari malformation, difficulty with word finding, numbness/tingling, tethered cord, dysautonomia, difficulty with temperature regulation

Cardiac: Tachycardia (fast heart rate), palpitations, orthostatic intolerance (dizzy when you stand up), mitral valve prolapse, poor exercise tolerance, low BP, POTS, blood pooling, flushing, Raynaud’s

Vascular: Varicose veins, blood pooling, bleeding disorders

Allergy/immunology: Excessive allergic/mast cell reactions, multiple food/chemical allergies, experience with anaphylaxis

Sleep: Difficulty falling and staying asleep, extreme fatigue, apnea

OB/GYN: Prone to premature labor, pelvic organ prolapse, pelvic pain, incontinence

Poor endurance: Poor exercise tolerance, severe fatigue/CFS, difficulty with self care required, difficulty holding a job or participating in school (requires rest to function)

Misc: Hernias

Here is the worksheet that medical providers will use to help determine if you meet the CLINICAL diagnosis of hEDS: https://ehlers-danlos.com/wp-content/uploads/hEDS-Dx-Criteria-checklist-1.pdf

[Please note: Wendy4Therapy is not a medical doctor and is not licensed to provide an official medical diagnosis. Education provided here is for your information only, and it is expected that you visit a medical practitioner who is licensed to provide a diagnosis for further exploration. Wendy4Therapy can take you through the diagnostic criteria but cannot formally diagnose EDS or related conditions. Please do  not reproduce without permission. This is GENERAL and not intended to be customized for individual patients. Please follow consultation and recommendations of your healthcare provider for specifics to your condition.