Understanding EDS
The Ehlers-Danlos syndromes (EDS) are a group of hereditary disorders of connective tissue that are varied in the ways they affect the body and in their genetic causes. The underlying issue is the abnormal structure or function of collagen and certain allied connective tissue proteins.
They are generally characterized by joint hypermobility (joints that move further than normal range), joint instability (subluxation [partial separation of the articulating surfaces of a joint]) and dislocations (full separation of the surfaces of a joint), scoliosis, and other joint deformities, skin hyperextensibility (skin that can be stretched further than normal) and abnormal scarring, and other structural weakness such as hernias and organ prolapse through the pelvic floor.
In the rarer types of EDS, there is also weakness of specific tissues that can lead, for example, to major gum and dental disease, eye disease, cardiac valve and aortic root disorders, and life-threatening abdominal organ, uterine, or blood vessel rupture.
Please visit The Ehlers-Danlos Society, which has an excellent primer on EDS that goes into more detail than is provided here.
EDS PSA
EDS looks different in every individual, and each day may be drastically different from the next. Just because someone looks "healthy" or is "successful" does not mean they aren't in pain and struggling. Those of us who live with chronic conditions, such as EDS and its comorbidities, are often pros at hiding and pushing through our pain.
Please believe us when we say "I have brain fog," "I can't walk that far," "I can't sit that long," "I dislocated my finger putting on my pants," "I got whiplash from the wind," "I'm having trouble breathing," "I'm so bloated it hurts," "the doctor mocked me," - or whatever it is that we bravely and vulnerably decide to share with you.
Your response - whether it is filled with or lacking in compassion and empathy - leaves a mark on us, and you have the opportunity to either leave us feeling traumatized and misunderstood or heard and respected.
Signs and Symptoms
Joints
- • Joint pain and deformity
- • Muscle pain
- • Nerve pain
- • Loose/unstable joints
- • Dislocations and/or subluxations and injury
- • Muscle tension and weakness
- • Weakness of the voice box and larynx
- • Hernias
- • Pelvic floor weakness and prolapses
- • Nerve disorders (neuropathy)
- • Chiari
- • Tethered Cord Syndrome
- • Cranio-cervical instability
- • Headaches
- • TMJ
Skin
- • Soft, velvety-like skin
- • Variable skin hyper-extensibility
- • Fragile skin that tears or bruises easily
- • Severe scarring
- • Slow and poor wound healing
- • Development of molluscoid pseudo tumors
Gut
- • Slow/poor motility
- • Nausea
- • Bloating
- • Abdominal pain
- • Poor nutrient absorption
Miscellaneous
- • Fatigue
- • Arterial/intestinal/uterine fragility or rupture
- • Scoliosis at birth and scleral fragility
- • Congenital hip dislocations
- • Poor muscle tone
- • Gum disease
- • Gum recession
- • Autoimmune dysfunction
- • Convergence insufficiency
- • Orthostatic intolerance
- • Sensory processing challenges
- • Brain fog
- • ADHD
What EDS Can Look Like in Real Life
Lifestyle
- • Legs twisted like a pretzel, standing on the tops of toes
- • Sleeping can be difficult and painful because muscles are always tensed
- • Shoulders falling forward, causing difficulty breathing
- • Difficulty swallowing, pills getting lodged in throat
- • Difficulty speaking, losing voice
- • Running and banging into objects, door frames, etc.
- • So many bruises from unknown sources
- • Difficulty building muscle tone
- • Fatigue caused/exacerbated by seemingly nothing
- • Looking 6 months pregnant after eating or drinking water
- • Avoiding handwriting because it hurts
- • Wake up → need to rest → shower → need to rest → etc.
- • Wake up → push through → crash HARD and pay for it
- • Saying "no" to social plans because of injuries, fatigue
- • Discomfort wearing clothes; changing multiple times
Injuries
- • Getting whiplash from the wind
- • Dislocating/subluxing fingers from pulling on pants
- • Getting concussions because of lack of proprioception
- • Spine and other joints shifting during sleep
- • Dislocating shoulder from being walked into
- • Rolling ankles, falling randomly
- • Spinal compression from sitting "too long"
- • Rib subluxations making it harder to breathe
- • Knee cap slipping when walking
- • Rib dislocations from wearing bras
- • Injuring jaw, spine, hips from crying, sneezing, coughing
- • Getting injured carrying bags, backpacks, groceries
- • Eating chewy foods causing jaw to jam or dislocate
Co-Morbidities
Neurological
- • Dysautonomia
- • Postural Orthostatic Tachycardia Syndrome (POTS)
- • Peripheral Neuropathy
Gastroenterological
- • Gastroparesis
- • Small Bowel Dysmotility
- • Median Arcuate Ligament Syndrome (MALS)
- • Irritable Bowel Syndrome
- • Small Intestinal Bacterial Overgrowth (SIBO)
- • Small Intestinal Fungal Overgrowth (SIFO)
Allergy-Immunological
- • Mast Cell Diseases
- • Mast Cell Activation Syndrome
- • Hereditary alpha Tryptasemia
- • Mastocytosis
Miscellaneous
- • Chronic Fatigue Syndrome
- • Osteopenia, Osteoporosis
- • Infection
- • Chiari
- • Tethered Cord Syndrome
- • Convergence insufficiency
- • Sensory Processing Disorder
- • ADHD
Care Team
Click here for a list of recommended practitioners
Primary Care
- • Primary/Family Care Physician
- • Pediatrician
- • Functional/Integrative Medicine Physician
Mind-Body Medicine
- • Psychologist, Psychiatrist
- • Hypnosis Practitioner (with MD, DO, or PhD)
- • Functional/Integrative/Naturopathic Medicine Physician
Physician Specialists
- • Gastroenterologist
- • Allergist-Immunologist
- • Neurologist
- • Cardiologist
- • Rheumatologist
- • Dermatologist
- • Pain Management Specialist
- • Optometrist
- • Ophthalmologist
- • Otolaryngologist (ENT)
- • Dentist
- • Periodontist
- • Orthodontist
- • Environmental Medicine Specialist
- • Neurosurgeon
Pain Management & Bodywork
- • Osteopathic Manipulation Specialist
- • Physical Therapist (Integrative Manual Therapy, dry needling, pelvic floor, vestibular, visceral, etc.)
- • Physiatrist
- • Chiropractor
- • Occupational Therapist
- • Alexander Technique Practitioner
- • Feldenkrais Practitioner
- • Massage Therapist
- • Neuro Performance Specialist
- • Dynamic Neural Retraining Specialist
- • Acupuncturist
- • Orofacial Myofunctional Therapist
Miscellaneous
- • Speech Therapist
- • Voice Coach
- • Nutritionist, Dietician
Management
When living with chronic conditions that require a lot of medical care, it can be hard to feel like we're in control of our bodies and lives. But with intention, we can take back much of that power, live more independently, and feel in charge of our lives again. Below are some tips on managing EDS at home. Stay tuned for blog posts that will provide details about how to use these resources.
- • Learning about the science of pain and working with an appropriate specialist to learn to apply the lessons of pain science to pain management and injury recovery
- • Theragun, Normatec Compression, Infrared sauna, Biomat
- • Acupressure mat, cupping, Gua sha, pelvic wand
- • NuCalm, iBreathe, Insight Timer
- • Tune Up Fitness therapy balls, Yamuna therapy balls, and Yamuna foot wakers
- • Wobble board and Swell balance board
- • Iron Neck, resistance bands, and rebounder (mini trampoline), and bone conduction headphones
- • Barefoot shoes (brands are Vivobarefoot and Xero)
- • Body Braid, braces, finger splints, supportive pillows
- • An adjustable bed frame and a Bearaby weighted blanket
- • Sleep, nutrition, hydration, movement, and stress management techniques
- • Advocacy skills, a growth mindset, boundaries, and community
- • Tongue depressors for tongue exercises and a gallon ziplock bag for bag breathing
- • Accommodations (in school, for exams, and at work)
- • Low Dose Naltrexone
Tips & Tricks
Schedule appointments with your physical therapist/osteopath/chiropractor for right after medical tests, such as colonoscopies, endoscopies, mammograms, MRIs, CT scans, etc. These tests can throw off our alignment and cause injuries, and planning ahead to make sure our tests are followed soon after by bodywork and realignment can make an enormous difference in comfort and recovery.
Related Blog Posts
Real Stories & Practical Tips
Neuro Performance Training Changed My Life
Neuro performance has transformed my life in the best of ways. I began working with my magnificent coach - Steve Madama, a Master Z-Health trainer - a little over a year ago. My health - and life - improved instantly.
Bye Bye Swollen Glands
I struggled with swollen lymph nodes for at least a decade. It was clear to me that the swelling was causing and exacerbating my pain and I also speculated that the swelling was connected to other debilitating symptoms I was experiencing.