Heat Intolerance in Fibromyalgia & Chronic Fatigue Syndrome

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Last Updated on March 8, 2024 by melissanreynolds

I’ve shared about experiencing heat intolerance in fibromyalgia and chronic fatigue syndrome. Especially on my Instagram while in Singapore.

heat intolerance and fibromyalgia

I went from an average of 18 degrees at home to 31 degrees, with high humidity. And man it was hard.

But even summer in Auckland, New Zealand can get difficult for me. It’s so pernicious that some days you don’t even realise that’s why you’re feeling so terrible. In the days around Christmas 2023 it was hot and humid. I was so unwell each afternoon and evening. Lethargy, nausea, exhaustion, thirst that water couldn’t quench and a headache were the mainstays.

In this brief article, I want to share what heat intolerance is, what the symptoms are and how to manage it. Because it took me so many years to tease out all of the things I was experiencing and what the triggers were. So if heat is a trigger for you, I hope this helps.

So what is heat intolerance?

It’s an unusual sensitivity to heat.

It can occur in conditions where the nervous system is dysregulated, like fibromyalgia and chronic fatigue syndrome.

What are the symptoms?

  • Fatigue
  • Headache
  • Dizziness
  • Nausea
  • Sensitivity to temperature changes (I shivered when entering air conditioned spaces!)
  • Orthostatic intolerance (high heart rate)
  • Hands and feet swelling

Essentially many fibromyalgia and CFS symptoms may feel worse if you are intolerant to heat and exposed to it.

Why you should manage it carefully?

Because those who are heat intolerant may also experience heat exhaustion, heat stroke, heat syncope (fainting), and more.

My heart rate rises in the heat and stays high for some time, when it finally subsides my chest hurts.

The effects of exposure to heat is the same as overdoing it in any other capacity – increased symptoms for some time afterward.

heat intolerance and fibromyalgia

How to manage heat intolerance?

  • Avoid heat exposure where possible
  • Use a portable fan
  • Cover yourself, big hat and light clothing
  • Hydrate (electrolytes, no alcohol)
  • Make smart choices about exposure- for example I only went to Singapore because I knew I’d have an air-conditioned room and I wouldn’t be responsible for my children
  • Keep your regular self-care and symptom management plans aggressively (read more about my game changing pain management plan here).
  • Listen to your body. Adhere to crash days

I’ve seen some recommendations for special cloths that you wet in the morning and are meant to stay cool that you can use on your neck. Some people recommend compression wear, but I would find that adding insult to injury in the heat. The stay dry/cooling tops didn’t work so well for me in Singapore, but for the end of season price I paid it was worth the experiment.

How do you manage heat intolerance?

My learning from Singapore (and a hot summer at home)

I need to do much better about protecting myself. Put on the air conditioning!! Sometimes I slide into feeling unwell that I don’t quite realise it’s happened. So being mindful is key.

Staying hydrated is not only a regular battle, but an all out war during the heat. When I find the water is simply not quenching my thirst I add salt or electrolytes and that helps a little. But once the heat has started to get me, it’s hard turn the ship around.

I’ve also decided I will refrain from traveling to hot places until I have the orthostatic intolerance under better control (at a minimum). We would like to go to Japan one day and the Spring and Autumn periods are not only meant to be beautiful but very temperate. Removing the constant headaches, swelling legs and hands and dizziness would go a long way to ensuring I enjoy myself and can manage the rest of the pressures on one with chronic illness when traveling.

My family hopes to do some more travel now the children are a little older. But I will have to assess each destination and trip as I go.

heat intolerance and fibromyalgia

Further reading for you

https://www.verywellhealth.com/warm-weather-survival-715599#:~:text=Warm%20or%20hot%20weather%20can,fatigue%20going%20through%20the%20roof.

https://www.medicalnewstoday.com/articles/325232#symptoms

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