10/01/2025
LOVE THIS! This is a major contributor to the challenges of working with EDS folks-there’s a lot of different systems affected. One of the best ways I’ve seen to help is to look for and work with the nervous system dysregulation / acute needs first. Where are the fires and why. Put them out and see what’s left to work with/on! Many health challenges are very well managed when the dysautonomia is managed!
October is Dysautonomia Awareness Month!
Many people with Ehlers-Danlos syndrome (EDS) or hypermobility spectrum disorder (HSD) also have a type of dysautonomia. There are different types of dysautonomia with different symptoms.
Dysautonomia, also called autonomic dysfunction, is a group of disorders that affect the autonomic nervous system.
People with EDS and HSD most commonly have a form of orthostatic intolerance. “Orthostasis” means to stand upright, so orthostatic intolerance refers to symptoms that occur due to standing up or being upright.
The two most common types of orthostatic intolerance are:
1️⃣ Orthostatic hypotension (OH) — low blood pressure on being upright.
2️⃣ Postural orthostatic tachycardia syndrome (POTS) — an abnormal increase in heart rate when standing without a drop in blood pressure.
Symptoms of dysautonomia include:
● Tachycardia (fast heart rate)
● Palpitations (feeling the heart racing or pounding)
● Hypotension (low blood pressure)
● Lightheadedness
● Presyncope (a sense of being about to faint)
● Syncope (fainting)
● Blurred vision
😶🌫️Brain fog (problems with concentration and memory)
● Headaches
● Chest pain
● Shakiness
💤Chronic fatigue
● Exercise intolerance and feeling worse after exercise
● Swelling and/or discoloration of the legs after standing for short periods of time
● Cold, discolored hands and feet
● Temperature dysregulation
🥵Sweating
● Sleep disturbance
● Gastrointestinal issues
● Nausea
🚽Bladder dysfunction
Click the link to learn more about dysautonomia, how it's diagnosed, and management strategies to help: https://www.ehlers-danlos.com/dysautonomia/
