Hypermobile EDS as yet has no identified distinctive cause; it evolves over time. The “hypermobility” phase (the first years of life) involves contortionism and propensity for sprains and dislocations; pain, often limited to lower limbs, also with fine motor or repetitive tasks; easy fatiguability may be a feature, together with voiding dysfunction. The “pain” phase (starting 2nd to 4th decade of life) includes more widespread and progressively worsening musculoskeletal pain, pelvic pain in women, and headache; exacerbation of fatigue; and is often associated with additional complaints. The “stiffness” phase (observed in a few adults and elderly only) results in general reduction of joint mobility; significant reduction in functionality due to disabling symptoms of pain and fatigue, and limitations from reduced muscle mass and weakness, prior injuries, and arthritis. The clinical description of hEDS in the medical literature has expanded considerably to include more features, such as chronic pain, chronic fatigue, Dysautonomia, Mast Cell Activation Syndrome, Hypoglycemia, anxiety, and more.

ehlers-danlos.com

What are the Symptoms:

• constant subluxations and dislocations (joint laxity i.e. loose joints)
• Orthostatic intolerance (Dysautonomia)
• significant lightheadedness on standing, due to a slowed response by their circulatory system to compensation against blood pressure and flow changes with shifts in body position
• Bowel disorders especially functional dyspepsia (indigestion) and irritable bowel syndrome
• poor strength of collagen
• skin hyper-extensibility
• muscle pains and fatigue
• slow healing wounds
• fragile blood vessels
• TMJ- sore jaw/ pain with chewing
• serious nausea
• ganglion cysts i.e. rounded hard lumps in the wrists
• Gastroparesis
• Pelvis and Bladder Dysfunction
• Fatigue conditions
• Mast Cell Activation Syndrome
• Stiff joints and muscles/ joints that click
• Insomnia and unrefreshing sleep
• RSIs (Repetition Strain Injuries)

from rheumatologist Professor Rodney Grahame, healthline.com, ehlers-danlos.com, and rarediseases.org

Age and severity of onset vary quite widely from very mild (almost undetectable) to quite severe – from one individual to the next. Also, this genetic disorder can appear to skip a generation or a mutation can arise spontaneously, lending to the diagnostic confusion. Though some lucky people never have a major problem, all super-flexible people should take care and try to check so as to avoid any permanent injuries or dislocations over time. You can be fine one day, and then suddenly start to sublux or dislocate one or more joints more permanently, as well as developing arthritis in such loose joints. This is part of the reason it takes more than 10 years, on average, to be diagnosed…. since patients present with such a widely varying constellation of seemingly unrelated symptoms – everything from myopia to IBS, TMJ, hernias, migraines, low blood pressure, hemorrhoids and flat feet – until a doctor realizes the common collagen “thread” running through them all. EDS is often accompanied by symptoms of dysautonomia (low BP, poor temp regulation, Raynaud’s) to some degree, and may include POTS (postural orthostatic tachycardia syndrome) or NMH (neurally mediated hypotension),  poor temperature regulation or GI motility issues.

chronicpainpartners.com