Top tips for ME/CFS: Coping with heat and hot weather

When memories of cold and wet weather are still fresh in the mind it is a relief to have some dry sunny weather.  However many people with ME and other chronic illnesses already struggle with temperature sensitivities and hot weather can make mann of us feel really ill. All of us can experience problems with prolonged high temperatures.

These simple precautions have been recommended by those who suffer and can help us to make the most of the warm weather and avoid unnecessary discomfort:

Keep out of the heat 

• avoid going out in the hottest part of the day (11am – 3pm)
• reorganise your day so you are more active when it is cooler
• wear a hat when out, use high factor sunscreen
• wear light, loose-fitting clothes, preferably cotton or linen
• cover yourself up – this may actually keep you cooler, especially if the heat is low in humidity.

Indoors

• use the coolest rooms in your home, as much as possible
• lying on the floor might be cooler, as heat rises
• close the curtains in rooms that get a lot of sun
• keep windows closed while the room is cooler than it is outside. Open them when the temperature inside rises, and at night for ventilation.
• water external and internal plants, and spray the ground outside windows with water (avoid creating slip hazards) to help cool the air
• turn off lights and electronic equipment that emit heat even in standby mode.

Stay cool

• take cool showers or baths, and splash yourself several times a day with cold water, particularly your face and the back of your neck
• tie up long hair in a pony tail
• run cold water over your wrists for 10 seconds on each hand. This will reduce your temperature for roughly an hour
• soak your feet in a bucket of cold water. The body radiates heat from the hands, feet, face and ears, so cooling any of these will efficiently cool the body. Kids’ paddling pools are great for adults feet too
• try storing lotions or cosmetic toners in the refrigerator to use on the body, including feet.

Eat & drink

• drink regularly even if you do not feel thirsty – water or fruit juice are best
• try to avoid alcohol, tea and coffee – they might make dehydration worse
• don’t be tempted not to eat – try to eat more cold food, particularly salads and fruit, which contain water
• carry a bottle/ container of water with you. Freeze it first and it will stay cold longer and can also be used to roll on your skin
• eat spicy foods – they make you sweat without actually raising body temperature. Once your skin is damp, you’ll feel cooled by its evaporation.

Cooling aids

• cooling gel pillow – a pillow filled with gel
• migraine relief strips, such as Kool n soothe
• cooling sprays and gels
• keep cool scarf – made with a synthetic microporous material that is activated by water
• fill a spray bottle with water and mist your face or the air around you – commercial ones vary in effectiveness
• put a metal bowl of salted ice in front of a fan, and adjust the fan so that the air is blowing over the ice.
• Or, use one or more 2 litre bottles and fill them mostly full of water (70%) & rock salt (10%). Leave 20% free for expansion. Freeze them, then place them in a large bowl (to catch the drips). Position a fan to blow on them. As the salty ice in the bottles melts, the air cools around them. The fan will blow that air at you. The water & salt in the bottles can be refrozen every night and used again repeatedly.

Some people are at higher risk and might need help

Older age: women over 75 years old appear to be more vulnerable to the effects of heat than older men, possibly due to having fewer sweat glands.

Chronic and severe illness: some conditions affect the way the body copes with heat. Medications that potentially affect renal function, sweating, thermoregulation or electrolyte balance can make people more vulnerable to the effects of heat.

Unable to adapt behaviour: due to mental confusion, mobility limitations, being bed bound, or if very young.

More info:

Public Health Wales: Extreme Hot Weather

VeryWellHealth: Warm weather survival with Fibromyalgia and ME/CFS    Adrienne Dellwo discusses temperature sensitivities and thermal allodynia (pain)

BBC News: How to cool your home in a warming world   Designing homes for rising temperatures

This revised article was first published in ME Voice 3 July 2013