The most typical signs and symptoms of hypermobile EDS are the following:
- Joint hypermobility (meaning that your joints are more flexible than normal, what is usually painful) in both large (knees, elbows) and small joints (toes, fingers)
- Constant tiredness
- Joint pain and clicking
- Constipation, heartburn or other digestive issues
- Elastic, soft skin that tends to bruise easily
- Internal organ problems, for example, organ prolapse or mitral valve prolapse
- Joint instability (tendency to dislocate easily)
- Stress incontinence (bladder control issues)
an increased heart rate and dizziness after standing up
- Osteoporosis
- Early-onset osteoarthritis
- Autonomic nervous system dysfunctions
- Increased risk of pregnancy complications
- Increased risk of pelvic prolapse
- Chronic musculoskeletal pain (meaning that it involves both bones and muscles)
- Abnormal scars
- Coinfections (viral and/or bacterial, usually under diagnosed and missed by many medical professionals.)
- Gastroparesis (GI dysfunction)
- Widespread, intense pain
- Chronic bladder infections and pain (Intersticial Cystitis)
- Co-morbidity of other conditions, such as POTS (Postural Orthostatic
Tachycardia Syndrome) and CRPS (Chronic Regional Pain Syndrome)
- Chronic anxiety
Vascular Ehlers-Danlos syndrome is the most common for people who have it in their family history, and the inheritance of this disease is autosomal dominant. People who suffer from it usually have a typical facial appearance, including a thin upper lip, prominent eyes, sunken cheeks, a thin nose, and small earlobes. What is more, they have very fragile blood vessels that sometimes can be clearly visible through the skin (especially on the upper chest and legs). As a result, their skin tends to bruise exceptionally easily.
We have found that for some EDS symptoms to express itself, dysautonomia has to be present. For example, a healthy balanced EDS patient may always be very flexible. They do NOT have to accept a life sentence of chronic pain, however. Dysautonomia is a malfunction (or imbalance) in the Autonomic Nervous System. This is the system that controls your body without you having to consciously think about it. An easy example is taking a walk. Deciding to take a walk is a conscious thought. That is the motor part of the nervous system that we control. However, when our heart rate speeds up while we are walking and our blood pressure rises in order to deal with the demand of oxygen by our muscles, that is the Autonomic Nervous system at work. Our skills lie in bringing balance and strength to the patient’s central nervous system, with a special emphasis on the autonomic nervous system.
I’m not hypermobile - could I still have EDS?
Hypermobile Ehlers-Danlos Syndrome (hEDS) is one of the most challenging conditions to diagnose, and here’s why: there’s no genetic test for hEDS, and not everyone with the condition is hypermobile or shows “classic” symptoms.
However, after working with countless patients dealing with dysautonomia and suspected EDS, we’ve noticed some unmistakable patterns. One surprising clue? The activities you’re naturally drawn to. Gymnasts, dancers, cheerleaders, and ballerinas often have EDS. Male patients often have a natural athletic grace and excel in sports like baseball, swimming, or basketball. These patients are also more prone to chronic injuries from physical trauma—think falls or car accidents—and their recovery is often slower.
EDS patients are often the ones who react poorly to medications. If there’s a side effect or a weird reaction to be had, they’re likely to experience it. Many also report a history of frequent childhood illnesses, GI issues (bloating, acid reflux, IBS, gastroparesis), and food sensitivities.
EDS patients commonly suffer from Mast Cell Activation Syndrome (MCAS). This condition makes mast cells hypersensitive, leading to exaggerated immune responses like histamine release that trigger inflammation and discomfort. They’re also prone to Postural Orthostatic Tachycardia Syndrome (POTS), a condition where standing causes heart rate spikes due to autonomic nervous system dysfunction.
Put simply, EDS is more than a diagnosis—it’s a pattern of symptoms and experiences. And the better we understand these connections, the better equipped we are to help those with this complex condition.