6 Unexpected Symptoms of Summer With Ehlers-Danlos Syndrome and POTS


We all look forward to the summer months. Longer days, warm evenings and a glimpse of the sun if we’re lucky (depending on where you live, of course). We’re bombarded with media images of toned, sun-kissed bodies on the beach or playing sport, laughing, healthy and fit.  But what’s often not considered in the media is for those who may not always relish the sun and heat. For those who have conditions such as Ehlers-Danlos syndrome (EDS) or postural orthostatic tachycardia syndrome (POTS) the summer may hold some dread and even fear.

Here’s some unexpected symptoms of summer you won’t hear about in the glossy magazines:

1. Palpitations – You expect to increase your heart rate if you’ve been exerting yourself, but it can be pretty disconcerting when your heart starts to pound above normal rate when you are simply sitting reading a book. I often find it difficult to even sit in the sun without becoming consciously aware of the heart rapidly beating. When it happens now, I know I need to find a shady place to sit and avoid sitting in direct heat. I’ll never leave the house without water.

2. Headaches – These seem to increase with the heat. Often due to cervico-cranial instability or poor head posture and the malfunctioning of the lower jaw, migraines and headaches are a feature of EDS. The heat puts more pressure on the autonomic nervous system which regulates body temperature and heart rate and it can make heat-related headaches. I’ll never be seen without a hat in the sun to try to alleviate these “heat headaches.” This works both ways – woolen hat for headaches caused by the cold and sunhat for the heat.

3. Dizziness and fainting – the first time I collapsed was while playing tennis in Greece in July some years ago. I had no idea at the time what was happening, but I hit a ball (exertion and rapid movement in the heat) and was then overcome with dizziness that forced me to the floor. A medic soon had my legs elevated while my heart felt like it was going to burst out of my chest. I remember saying to my husband that I didn’t want to die there – that’s how terrified I was. It was following this collapse that I was diagnosed with a floppy valve. This is where the mitral valve in the heart does not close properly – another EDS symptom, which would be exacerbated by the heat.

My solution since then is to choose wisely the times and conditions at which I exercise, and drink plenty of water before to keep hydrated. Dizziness can also affect some people when they stand up from sitting – especially if they are diagnosed with POTS. Take your time when changing position and try doing some ankle circles before you stand, as this will help the blood circulate up the legs.

4. Exhaustion – The heat generally makes everyone feel tired, but if you have a chronic condition this may be exacerbated. It can feel like jet lag and all you can think of is sleep.  One of the related EDS symptoms is chronic fatigue, and the fact that we have to work harder in the heat overwhelms the body. Trying to pace activity where possible and plan rest breaks into the day help me a great deal. The idea of a “siesta” becomes very appealing in the heat.

5. Temperature sensitivity – My family has always laughed because while they are diving and frolicking about in the water, I’m the one who never gets in the swimming pool or sea, no matter how hot it is outside. I can paddle no problem, but going above the waist is a big no. Many people with EDS are sensitive to temperatures, as the change from a hot to a cold environment is often too much for the system to cope with. I have tried wearing sun protection vests to give a little more insulation in the water. I also try to adjust gradually to temperature changes rather than diving in head first.

6. Heat rash – As a child, a doctor told my mum to feed me more salt to prevent this rash that would appear all over my body in the summer. I’m not sure that worked although I know some people use salt sticks now [to treat POTS]. I realize now the rash may have been due to the EDS symptom of delicate, sensitive skin. I still go red quickly in the sun and the rash appears if I wear below 50 SPF sunscreen. EDS skin can be fragile and react quickly to trauma and stress, such as too much sun.

Summer is a wonderful time – I do love the longer and brighter days, but it’s important we are mindful to also manage our chronic conditions to avoid flare-ups. I hope my experiences can help you through the coming months.

Photo via Unsplash


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