Warm Weather Survival With Fibromyalgia and ME/CFS

Warm or hot weather can be taxing for those of us with fibromyalgia (FMS) and chronic fatigue syndrome (ME/CFS), even when temperatures are extreme enough to bother most people. You may find yourself overheated, sweating profusely, with your hands and feet puffing up and your pain and fatigue going through the roof.

So what's behind this symptom? Why does heat bother us and cause so many symptoms to kick up?

Cold drink on a hot day
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First of all, it's because many of us have temperature sensitivities to either heat, cold or both. We have a larger physiological response to temperature than other people.

We don't know a lot about this symptom at the moment, but we know enough to suspect that it's the result of dysfunction in our autonomic nervous system, which is the part of the nervous system that deals with homeostasis.

"Homeostasis" means that the body tries to keep itself stable and regulated in certain ways. Your heart beats at a certain speed, you breathe in and out at a certain speed, your internal temperature stays within certain parameters, etc.

In these conditions, though, homeostasis doesn't seem to do a very good job of some things. So, basically, our bodies just don't regulate temperature properly. The result is that we tend to be more affected by our surroundings than healthy people are.

This isn't a symptom that's easy to treat. In fact, none of our common treatments even attempt to target it. That means we have to learn to manage it on our own. We need to figure out how to cool ourselves down when we overheat, but even more importantly, we need to keep ourselves from getting too hot in the first place.

Preventing Heat Problems

The best ways to keep from getting too hot are pretty obvious: keep your environment cool and stay inside when the temperature is too high for comfort. However, those techniques aren't always possible and could keep you from doing a lot of things you enjoy.

For those times when you can't avoid the heat, keeping yourself cool takes some forethought and preparation. Some good ways include:

  • Sticking to cold food and drinks
  • Using an umbrella for shade
  • Wearing a visor instead of a hat (so your body heat can dissipate through your head instead of being trapped there)
  • Wearing loose-fitting clothes made of breathable fabrics
  • Avoiding hot baths or showers, or rinsing with cool water before getting out
  • Avoiding hair-styling products that use heat, such as blow dryers or flat irons

Some people with these conditions find that showers are a bad idea, due to the heat and several other factors.

You probably have to limit your activity levels anyway due to your illness, but take special care to limit how active you are in a warm environment.

Cooling Off

When you do get overheated, you'll likely feel better if you can cool yourself off right away. We tend to have a harder time with this than other people, as well.

When you're at home, you might be helped by things like ice packs, cold compresses or washcloths, or soaking your feet in cool water.

You'll want to be able to cool down when you're away from home, as well, and that can take some extra preparation.

Some ideas include:

  • Carrying a cooler with ice, ice packs, and cold drinks
  • Running cold water over your hands and/or splashing it on your face
  • Keeping cooling products on hand
  • Wearing layers
  • Wearing sandals or slip-on shoes that don't require socks

However, we can face a special problem when it comes to these cooling methods. If cold items are too cold for you to tolerate, they may cause a spike in pain or other symptoms. That's due to a symptom called thermal allodynia.

A Special Problem: Allodynia

Allodynia is a type of pain that comes from something that wouldn't normally be painful. With thermal allodynia, temperatures that don't damage tissues or even bother healthy people may cause extreme pain in us.

That means an ice pack on a hot forehead may be a bad idea. Try gentler methods, like a cold washcloth, so you don't shock your system.

You may also have to worry about mechanical allodynia, which is pain from something moving across the skin, and that can include air.

That means a fan or air conditioner blowing right on you may trigger significant amounts of pain, as well. If you can't help but be in the path of blowing air, you might be helped by covering your skin with a light fabric.

A Word From Verywell

Many people who have trouble with overheating may have the opposite problem of getting too cold. It's important to learn about keeping yourself warm as well as the underlying symptom of temperature sensitivity.

The more you understand what's going on in your body, the more you're able to compensate for these kinds of problems. It may seem overwhelming at first, but if you work to develop good habits, all this will eventually become second nature.

10 Sources
Verywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read our editorial process to learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.
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By Adrienne Dellwo
Adrienne Dellwo is an experienced journalist who was diagnosed with fibromyalgia and has written extensively on the topic.