About EDS

Ehlers-Danlos syndromes (EDS) are a group of inherited genetic conditions that cause hypermobility as well as many other symptoms. They are often misdiagnosed or undiagnosed for many years. There are 13 types of EDS, most of which are rare but hypermobile EDS (hEDS) is the most common type and relatively common. Some people may have the hypermobility symptoms and other symptoms like pain but do not meet the full criteria for hEDS and are diagnosed with what is called Hypermobility spectrum disorder (HSD) which is treated the same way as hEDS. hEDS is a mult-gene disorder unlike the rarer types of EDS and therefore does not have a specific blood test to confirm the diagnosis, it is a clinical diagnosis.

Although the exact biomarkers and poorly understood, hEDS is thought to involve mitochondrial dysfunction (how our cells make energy) and may also involve endocannabinoid system dysfunction, an overarching neuroregulatory system in the brain and body which would explain the symptoms of fatigue most people with EDS experience.

Symptoms

People with hEDS may have:

• joint hypermobility
  loose, unstable joints that dislocate easily
• joint pain and clicking
• Generalized pain in the body that can move around
• extreme tiredness (fatigue)
• skin that bruises easily
• digestive problems, such as heartburn and constipation
• dizziness and an increased heart rate after standing up including POTs syndrome
• problems with internal organs
• problems with bladder control

Signs of hEDS

The Beighton score is normally used for assessment of hypermobility syndrome and looks for pains in knees, finger, hips and elbows and one or more of the following:

• The wrist and thumb can be moved downward in a manner that the thumb touches the forearm.
• The little fingers can be extended back over 90 degrees.
• When standing, the knees are abnormally bowed backward (hyperextended) when viewed from the side.
• When fully extended, the arms bend further than normal.
• When bending at the waist, with the knees straight, you can put palms flat on the floor.

How Holistic Treatment Helps EDS

While there is no cure for hEDS, a holistic approach is key to reducing pain and fatigue and brainfog that can be extremely debilitating, since hEDS does not simply make you ‘more flexible.’ Digestive issues and bladder problems can also be problematic and many people have been diagnosed with IBS but actually have hEDS causing these symptoms.

A holistic personalized treatment plan includes novel botanical medicines to quickly improve pain, fatigue and brainfog as well as help support more restorative sleep. Nutritional and functional medicine focusing on the gut-brain axis to reduce digestive issues, food intolerances and associated symptoms like POTS can help heal and improve long term quality of life free from debilitating symptoms.

A functional restoration programme with an hEDS physiotherapist that is tailored to your body is also helpful for maintaining strength and reducing hypermobility that can cause more pain and biomechanical issues and novel botanical medicines can reduce pain and fatigue and increase exercise tolerance to allow you to add this to your treatment plan successfully.