Extreme weather conditions can be difficult for people with M.E. and we’re in for a hot week! The illness affects our temperature regulation, with 87% of the respondents to Action for M.E.’s 2006 ‘M.E. – More Than You Know’ survey reporting having these problems[1].
I realise this article is quite long, so if you have difficulty reading and want to go straight to the advice I’ve summarised, click here.
Last summer I couldn’t be out in the sun for more than 5 minutes without a migraine starting, so I spent the majority of the summer months staying indoors with the curtains drawn, with a fan and an ice pack wrapped in a wet flannel to keep cool, and only occasional visits outside for very short periods. This summer I seem to be able to tolerate both the heat and the sun more, which goes along with my general improvement in symptoms since this time last year. I still need to be really careful and follow the advice so that I don’t get carried away and get worse again.
In addition to feeling all “hot and bothered”, excess sweating and dehydration can be more of a problem. Certain medication, such as amitriptyline, can add to this because of its antimuscarinic/anticholinergic side effects[2]. This means that this medication affects the autonomic nervous system and some of the body’s functions that help with regulation, such as sweating. Don’t stop taking your medication though – talk to a pharmacist or your GP about coping with side effects. If you’ve tried everything and still find the side effects intolerable, speak to your GP or specialist about possible alternatives but bear in mind that these effects are also part of M.E. so aren’t entirely down to medication side effects.
The bright sunshine can be painful to the eyes (photophobia) and can trigger migraines in some[3]. Others with the illness may find that their skin burns more easily, so to avoid burning, use suncream regularly or cover up. Many people with M.E. have low vitamin D. There’s some debate over whether this is due to us staying indoors a lot and therefore not manufacturing enough vitamin D in sunlight or there being a more direct relationship between vitamin D deficiency and the disease[4], which is discussed in this blog post. It’s important to try to get some sunshine on bare skin if possible, even in very short bursts, putting sun cream on, covering up or going indoors well before the time it takes for you to start to burn[5] or feel unwell, avoiding the hottest time of 11am-3pm[6]. More information about how to get your vitamin D is available on the NHS Choices website.
The heat can also trigger or worsen symptoms such as palpitations, breathing difficulties and orthostatic intolerance[1], so make sure you have your reliever inhaler to hand if you use one, drink plenty of fluids (including replacement of salts if you’re sweating buckets like I do) and use the general advice for coping with hot weather on the NHS Choices website
I’ve summarised some of these tips below[1,6,7,8]:
- Avoid going out in the hottest time of the day, which is 11am-3pm
- Drink plenty of fluids to replace what you lose but avoid tea, coffee and alcohol. Also use salt replacements such as sport drinks containing sodium, potassium and glucose, or rehydration solution such as Dioralyte, if you sweat a lot. Salts help the body absorb water from the gut, so without them it’s hard to stay hydrated.
- Wear light and loose clothing
- Shut south-facing curtains in the daytime or stay in north-facing rooms, or in the shaded outside
- Keep windows shut during the day and open them in the cool evenings and at night
- If your bedroom is too hot at night consider sleeping downstairs where it might be cooler
- Use an electric fan
- Splash yourself with cool water as this encourages heat loss via water evaporation. I’ve found using a pump-action bottle of body mist that’s kept in the fridge really refreshing in a similar way – Emily
- Use an ice pack wrapped in a tea towel or wet flannel as a “cold water bottle”
The NHS Choices page also advises to seek medical help if symptoms such as breathlessness, chest pain, confusion, weakness, dizziness or cramps get worse or don’t go away[6].
What have you found helpful for coping with the heat? Please leave your tips for others in the comment section below.
References
1 Pinching A. Action for M.E. | Dear Doctor | Temperature control. Action for M.E. 2015. http://www.actionforme.org.uk/get-informed/publications/interaction-magazine/read-selected-ia-articles/dear-doctor/temperature-control (accessed 30 Jun 2015).
2 NICE. 4.3.1 Tricyclic and related antidepressant drugs. British National Formulary. 2015. http://www.evidence.nhs.uk/formulary/bnf/current/4-central-nervous-system/43-antidepressant-drugs/431-tricyclic-and-related-antidepressant-drugs (accessed 30 Jun 2015).
3 NHS England. Migraine – Causes – NHS Choices. NHS Choices. 2015. http://www.nhs.uk/Conditions/Migraine/Pages/Causes.aspx (accessed 30 Jun 2015).
4 Whiteley P. Questioning Answers: Vitamin D deficiency and Chronic Fatigue Syndrome. Questioning-answers.blogspot.co.uk. 2012. http://questioning-answers.blogspot.co.uk/2012/10/vitamin-d-deficiency-and-chronic-fatigue-syndrome.html (accessed 30 Jun 2015).
5 NHS England. Vitamin D and sunlight – Live Well – NHS Choices. NHS Choices. 2015. http://www.nhs.uk/Livewell/Summerhealth/Pages/vitamin-D-sunlight.aspx (accessed 30 Jun 2015).
6 NHS England. Heatwave: be prepared – Live Well – NHS Choices. NHS Choices. 2015. http://www.nhs.uk/Livewell/Summerhealth/Pages/Heatwave.aspx (accessed 30 Jun 2015).
7 Action for M.E. Controlling symptoms | Hot and bothered. InterAction 2014 Summer;87(38). http://www.actionforme.org.uk/get-informed/publications/interaction-magazine/read-selected-ia-articles/treatments/controlling-symptoms/hot-and-bothered (accessed 30 Jun 2015).
8 NHS England. Dehydration – Treatment – NHS Choices. NHS Choices. 2015. http://www.nhs.uk/Conditions/Dehydration/Pages/Treatment.aspx (accessed 1 Jul 2015).
A Prescription for M.E. 
Great blog. You must have spent many a late night on this one Em.
I don’t have a garden with my ground floor flat, which was fine when I was less able than I am now, but I do miss it.
However, the temperature intolerance remains a big factor for me and summer’s are pants. Literally! It’s ‘pan-time’ or ‘no-pants’ 🙂
Windows open, curtains closed, oscilating fan on, feet up on the sofa, and as few clothes as possible – depending on whether I am expecting a delivery or not (been caught out on many an occasion!) 🙂
Very necessary to have net curtains up at the windows: but my home, my rules! 🙂
And I am just waiting delivery of a cooling neck-scarf, as recommended to me in a similar conversation we were having on MEA Facebook. Was £5 I think and is claimed to do the business.
Hot drinks? I know. When I was younger I thought older people were mad, but now… a cup of tea can be as refreshing as a cold can of pop or juice.
Am just recovering from small explosion in the fridge – so word of warning: don’t let your fridges get too cold so as to freeze drinks in cans. They do ‘pop’ 🙂
Russ x
LikeLiked by 1 person
Excellent advice, Russ and thanks for commenting. That cool neck scarf sounds just the ticket right now! I suppose a normal wheat bag cooled in the fridge would do, or using the “cold water bottle” around your neck. I used to have a fan but it burnt out! What use is that?! 😀
LikeLike
I think most wheat bags can be put in the freezer (wrapped in a plastic bag) as well
LikeLiked by 1 person
Good tip, thanks, Liz 🙂
LikeLike
This is packed full of good advice, many thanks.
LikeLiked by 2 people
Thanks, Henry, I’m glad it’s of use. Hope you’re coping with the heat and humidity 🙂
LikeLike
Hallo again (I seem to only comment on temperature-related threads, but heyo, the big thing that EDS and ME have in common is the temperature intolerance in both directions).
Stuff I’ve found that works on a budget-
– Dioralyte. Keep a sachet in your pocket, can be added to tap water to make up rehydration salts according to packet instructions.
– 6tsp of sugar and half a tsp of salt into a litre of water is a good and free substitute (Usefully, that’s six cafe sachets of sugar and one cafe sachet of salt, which is very portable). Both are so much less headache-inducing than straight cold water.
– Tinfoil blanket. Folds up small enough (if it’s unused) and although primarily designed to keep heat in, also reflects the heat off. Emergency-level stuff, and not ideal, but if you’re stuck out in the field and the alternative is being cooked, it’ll buy you time whilst someone finds you water or phones an ambulance. Approx £2 on Ebay, technically reusable, but trying to fold one back down after use is a complete pain. Their big strength is that they fold down to about the size of a wallet, so you can put one in a coat pocket and never take it out until you need it.
– At risk of sounding like I’m always advertising British Army Surplus – Headovers. The genuine issue one is a tube of knitted merino wool, or a silk blend, about two foot long and the circumference of a head. Soak it in cold water, stick it around your neck, or folded around like a balaclava, or on your head like a patka, or even around your thigh like a legwarmer, and it’ll keep the heat off and even protect from sunburn a bit. About £6, but will put up with whatever you throw at them for literally decades, and can be darned to make them last longer. Only come in dark green, but can be dyed with indigo or henna to get black or a coppery colour.
– In a similar vein, a shemagh is a good lightweight scarf (About a metre square, soft tight-woven cotton) which will keep the sun off when dry and be amazingly cooling when wet. And if you buy the pale brown one, they can be dyed to match basically any outfit with normal Dylon.
– Think about where your arteries get closest to the skin; Inner thigh, top of the foot, inner wrist, surface of the neck, and big expanses of very vascular muscle: Upper back, thigh, buttocks, upper chest. Apply cold there to get it to spread the furthest.
LikeLiked by 1 person
Some great tips, Percy, as usual. Thanks very much 🙂
LikeLike