The connection between EDS/HSD, hydration and movement

Let’s start by looking at the body. On a cellular level, the body has around 4 types of cells: neural, muscular, epithelial and connective. Ehlers Danlos Syndrome (EDS) and Hypermobility Spectrum Disorder (HSD) are disorders affecting the connective tissue of the body. 

Connective tissue is everywhere; it’s interwoven and connected throughout the entire body. It is used to form the basal layer of skin, surrounds the muscles and organs and offers a scaffolding-like structure for bones and cartilage. It is also used to create a substance entirely from connective tissue called fascia, which, much like Spiderman’s web, helps to envelop and hold all the parts of our body together. 

The primary structural protein of connective tissue is called collagen. When there is a variation in the genetic composition of the collagen, this can result in a laxity of the connective tissue. 

We often associate this laxity of connective tissue with hypermobile joints. However, this laxity has a greater impact. If you imagine a hair tie for example, the more stretched the elastic of the hair tie becomes, the less hold it has on the hair. The same can be said in regards to the hold or support of not only our body’s joints but also our body’s systemic structure. 

We know that connective tissue is a web that surrounds not only our musculoskeletal system, but all our other bodily systems as well. When the hold our connective tissue has on the systems of the body is compromised, we start to see the impacts of the interconnected web at play, with other co-morbidities and symptoms often presenting alongside hypermobile joints. 

This means we see impacts and changes to our gastrointestinal, neural and autonomic nervous systems, muscular and immune systems as well as impacts to our sleep and mental health. 

How does this relate to hydration and movement?

The hypermobile nature of joints and blood vessels that we see in EDS and HSD often results in an altered function of systems. When there is too much stretch of the blood vessel structure, and we start to move, the blood vessels struggle to maintain blood pressure as the blood starts to pool towards the lower body. This blood pooling can then result in an onset of symptoms such as brain fog, light-headedness and dizziness, to name a few. 

Similarly, when the body registers heat brought on by environmental factors or exercise, the vessels in our body will dilate; allowing for the release of heat through convection and sweat. When there is a disruption to our autonomic nervous system, the body’s thermoregulation abilities can be impacted, making it difficult to regulate temperature. 

In a body where the autonomic nervous system may be compromised, we may see an increase in symptoms such as swelling, dizziness, fatigue, joint pain, air hunger, flushing, headaches and flare-ups in hot and humid environments. This is due to the inability to thermoregulate and the loss of sodium and hydration through sweat. 

How does hydration help?

We know that the body needs water to function properly. Sometimes, when our body has a difficult time holding on to that water, we need a little extra help in the form of sodium. 

Sodium promotes an increase in our blood volume; reducing the effects of brain fog, dizziness, lightheadedness and headaches. Additionally, the increase in fluid intake encourages a flushing of our body’s toxins as well as promoting joint lubrication, helping to reduce joint pain. 

When we increase our fluid intake, the body is more receptive to movement. When we increase our movement, the hypermobile body receives more support and stabilisation which in turn, helps to circulate the blood and oxygen around our body, reducing debilitating symptom onset. 

With that in mind, here are a few ways in which we can help support and build movement autonomy whilst maintaining hydration.

The first steps to receiving movement

1 - Hydration is key

 When we move or exercise the body, we lose water through sweat and breath. Staying hydrated is very important to ensure we are replenishing what the body loses. 

Why is this important? Water allows the blood to continue to flow around the body, delivering oxygen to our organs. Due to the multi-systemic nature of EDS and the common occurrence of other adjacent conditions such as Postural Orthostatic Tachychardia Syndrome (POTS), being mindful of our hydration intake throughout the day can be game changing. 

A few ways you can encourage more hydration throughout the day include:

• Carrying a water bottle with you wherever you go. This can help you track your intake. Aim for 2-3L of water a day. 

• Keeping a full water bottle on the nightstand when going to bed. This’ll help ward off orthostatic symptoms in the morning. 

• Using an insulated water bottle to keep the water cold throughout the day. 

• Considering your electrolyte intake under the guidance of medical professionals. If needed, electrolyte supplements such as Sodii are a wonderful way of supporting the body’s sodium stores. 

2 - Practice Setting Limits

Fatigue is often associated with symptomatic joint hypermobility. Muscles tend to fatigue faster in an EDS/HSD individual due to having to work overtime to try and support the joint where laxity of connective tissue is present. 

When we are experiencing persistent fatigue, this can start to diminish the energy stores and mental capacity, making exercise and movement feel that extra bit harder. Finding ways to help manage this fatigue is paramount in enabling the body to maintain a consistency and movement adherence without pushing too far and experiencing a flare-up in symptoms.

What can help? Pacing is a wonderful energy conservation strategy that helps to manage our load distribution throughout the day. There are many pacing strategies one can implement to help reduce overload or manage symptoms, so it’s important to find strategies that resonate with you. 

Here are a few examples to offer guidance in developing a pacing toolkit:

• Filtering in short and long breaks throughout the day to help break up the heavier loaded activities.

• Identifying your energy use. An activity diary can be helpful in recognising what loads take up the most energy and whether there is an opportunity to ‘cushion’ these loads with moments of rest. This allows us to find the best time for movement in our days. 

• Modifying or reducing overstimulation in your environment.

• Setting timers throughout the day for rest reminders and hydration breaks. Sometimes we don’t register signals in the body that tell us we need water; timers can ensure we stay hydrated throughout the day.

3 - Building awareness of our body’s cues

The autonomic nervous system is the part of our nervous system which controls many functions within our body, including heart rate, digestion and breathing. This system reacts to perceived input and will act accordingly so as to maintain a sense of homeostasis. 

In an EDS/HSD body, where there is laxity to the connective tissue around the joints or organs of the body, the sensory information being processed can be disrupted. This may result in altered proprioception and altered perception of our internal cues which can all affect our movement capacity.  

What can help? Here are a few strategies that may help support the body through movement:

• Elevating the head to help with orthostatic symptoms.

• Exercising with compression garments to help promote blood flow and reduce the possible occurrence of blood pooling.

• Electrolytes, water and salty snacks available to have before, during and after exercise to help with managing hydration and blood volume. Be guided by a dietitian or your GP as to what quantities are recommended.

• Using props during exercise to offer the body support, reduce muscle gripping and promote muscle awareness in movement. 

• Having a cold compress or positioning yourself near the air conditioning particularly in hot environments. 

• Using braces where necessary to support the joints and provide some pain relief. Be guided by your physiotherapist in the use of these braces. 

• Taking your time through movement - there is no rush! Move at your own pace.

Movement should be a really joyful experience, though sometimes we need a little more support for our bodies to create a more nutritious movement experience. Understanding our bodies and how hydration, pacing and movement set up can improve capacity is a positive first step in creating more movement autonomy.

References

Fu, Q. & Levine, B.D. (2018). ‘Exercise and non-pharmacological treatment of POTS’. Autonomic Neuroscience: Basic and Clinical. 215(2018). 20-27. Doi: 10.1016/j.autneu.2018.07.001

Lau, D.H., Fedorowski, A., Raj, S.R., Schild, C., Raj, V., Boris, J.R., Kavi, L., Seeley, M., & Gallagher, C. (2026). ‘Postural Orthostatic Tachycardia Syndrome: A state of the art review’. Heart, Lung and Circulation. https://doi.org/10.1016/j.hlc.2025.09.004

Smith, C. (2017). Understanding hypermobile ehlers danlos syndrome and hypermobility spectrum disorder. UK: Redcliff-House Publications