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.
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. 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. 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, 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 or feel unwell, avoiding the hottest time of 11am-3pm. 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, 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
- 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”
What have you found helpful for coping with the heat? Please leave your tips for others in the comment section below.
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).