Key Considerations - before, during & after exercise from a Pilates Instructor with Dysautanomia
My name is Zoe Doonar and I’m a diploma qualified Pilates instructor who work closely with any.BODY’s Accredited Exercise Physiologists to help women with EDS, POTS+ prioritise movement in their life.
I have EDS (Ehlers Danlos Syndrome) and dysautonomia. EDS is a genetic connective tissue disorder which affects collagen production in the body. This leads to increased laxity within the connective tissue. This involves the whole body including the digestive tract, blood vessels and organs such as the heart, lungs and brain, as well as in ligaments resulting in hypermobility. EDS is different for everyone so it’s best to think of it like a colour wheel, where there is many overlapping and interplaying factors – two people with EDS can present very differently which is why it is such a complex condition.
Having EDS increases the risk for co-morbidities (other chronic conditions) such as POTS, chronic fatigue and MCAS (Mast cell activation syndrome). These conditions fall under the umbrella of dysautonomia. I have learnt so much along my health journey from a variety of health professionals, including Accredited Exercise Physiologists. Movement plays a key role in managing my symptoms, but I 100% understand that the thought of moving when you are in the depth of feeling unwell, can be too much to handle. Below are some things I consider/have learnt to greatly impact my ability to move symptom free.
DISCLAMER – every individual’s experience with POTS+ is different. This is what works for me and is not medical advice.
BEFORE
1. Hydrate!
With POTS, it’s very important to stay hydrated as the body is already working hard to pump blood to the extremities and head. Increasing the blood volume through hydration is one of the best ways to help reduce POTS symptoms during and after exercising. I like to use electrolytes at least 30 minutes before exercising to ensure that I’m sufficiently hydrated. This is usually pretty simple for me as I start drinking these electrolytes very soon after waking everyday which helps control my symptoms for everyday life.
2. Put on compression clothing.
This can vary but I usually wear compression socks at the gym or for any cardio training. This helps the blood circulate back up to the brain to reduce any light-headedness or fatigue. At this stage, my POTS symptoms are pretty manageable with just ankle compression socks, however, if I’m feeling like I need extra support, I wear my knee-high compression socks as well as compression tights. The compression socks also help provide proprioception, which makes movement easier and makes it feel better!
Did you know that health professionals in France, that work with people with EDS tailor make compression garments for their patients to assist with management.
DURING
1. Slowly ease into the movements.
What movements are best for you is best prescribed by an Accredited exercise physiologists. They really do understand the human body so well, and can see what you need! We are here to help guide you through your movement program. For me, exercising is not about going hard or trying to get DOMS. It’s about very slowly building my tolerance to exercise and staying symptom free. So, for the first 5-10 minutes, I’m monitoring how I’m feeling and heart rate. I also like to start in either supine or seated positions to slowly work up to standing. Again, some days I am feeling fine and can start in standing. It’s all about listening to your body’s signals and putting the ego to the side. This can be one of the biggest challenges!
2. Take breaks!
THIS! There is absolutely no shame in resting when you need to. It does not mean you are weak, lazy or not trying hard. POTS is extremely fatiguing and exercising on top of that is something to be proud of in itself! Taking breaks will help manage symptoms and help build endurance through movement which is the overarching goal.
3. Keep hydrating.
I take sips of the electrolyte drink every few minutes so I have a steading flow of liquid in my system. This also forces small breaks throughout the workout which is a plus!
4. Listen to your body.
This is often a learnt skill, and not an inherited skill. When there are times when you have felt so poor its easy to dissociate from your body, however the key to manage symptoms is to listen! As movement professionals we are also here to prompt you, ask the right questions and guide you along the way. POTS symptoms can change without warning and without cause. Remember, you do not have to commit to the whole program/class. If you become symptomatic, there is lots of ‘restful’ things we can do such as calming movements + breathwork (central nervous system down-regulation).
AFTER
1. Calming movements/breathwork (central nervous system downregulation)
A post movement routine is just as important as the workout itself. People with POTS can find it hard to calm the central nervous system. Exercising puts the body into fight/flight mode and it’s important to actively work to flip to the rest/digest mode. This can be done through stretching, breathwork practices or just laying down and taking slow, calming breaths. I like to do all three! As I’m hypermobile, I like to do some dynamic stretches on the floor or trigger pointing areas that I have just worked. I also take this time to bring awareness to my breathing and notice if I need to spend an extra few moments on some mindfulness exercises.
2. Keep hydrating!
You’re probably sick of reading this but keep drinking! Especially if you have perspired during the workout or you start to feel any symptoms coming on.
3. Be kind to yourself…
This might seem like an odd tip but sometimes our conditions hold us back from moving our bodies like we used to or we can get frustrated that we might not have done as much as we set out to do. I was once a professional ballerina. Dancing 8-hour days and doing amazing things with my body. I then went on to teaching dance and Pilates full time and still doing amazing things with my body. When my dysautonomia was at its worst, I couldn’t work, I couldn’t get off the couch, I couldn’t even speak at times as I was so unwell. I recognise how far I have come (with A LOT of hard work) as I am now able to work, exercise and give energy to my clients.
