Cold Survival With Fibromyalgia & Chronic Fatigue Syndrome

Doing you have trouble staying warm because of fibromyalgia (FMS) or chronic fatigue syndrome (ME/CFS)? Do you dread the cold?

Temperature sensitivity is a common symptom of these conditions. When cold temperatures are a problem for you, it can make the winter months a real battle—and make overly air-conditioned spaces difficult, too, which makes it a year-long problem. With a little planning, though, you may be able to alleviate the worst of what the cold does to you.

Getting chilled is a problem for a couple of reasons:

1. We can have a really hard time warming up
2. It can lead to flares of other symptoms 

We're starting to see some research on this symptom, which may lead to treatments down the road, and we do have some idea why we have a problem dealing with the cold. (Many people with these conditions have problems tolerating heat, as well.)

Cold sensitivity in these conditions is so broadly accepted by the medical community that it's frequently used in studies to trigger a pain response, and yes, we are shown to react more to it than healthy people. In fact, in a 2015 Belgian study on skin temperature changes in FMS, researchers noted lower tolerance to cold and a more extreme drop in temperature when exposed to near-freezing water.

Why Do We Get So Cold?

Many researchers believe these illnesses involve something called dysautonomia, which means dysregulation of the autonomic nervous system. That's what controls our homeostasis, which keeps things like our heart rate, digestion, and body temperature within normal parameters.

In dysautonomia, these automatic functions can be askew, and in many of us with FMS and ME/CFS that's highly apparent in our body temperature.

When a healthy person's feet get cold, for example, the autonomic nervous system kicks into action, re-directing the flow of blood to warm up the area. As long as the situation isn't extreme, the body should be able to overcome the effect of the environment.

Because of dysautonomia, though, when someone with FMS or ME/CFS gets chilled feet, the body isn't able to adapt properly, so the feet stay cold. Even putting on thick socks may not help warm them up. The environment has a greater impact on the body that it should.

In some people, this problem may be severe enough to warrant its own diagnosis—Raynaud's syndrome. In that condition, hands and feet can become so cold that they turn blue and the tissues may become damaged. That sets it apart from FMS and ME/CFS, which don't involve the color change and tissue damage.

When pain is directly related to being cold but no tissue damage is occurring, it's called thermal allodynia. When the cold acts as a trigger for widespread pain in areas that aren't cold, or triggers a cascade of other symptoms … well, that's just how FMS and ME/CFS tend to work. It's just part of having a hypersensitive nervous system.

Preventing Problems With Cold

So far, we don't have widely recognized treatments aimed at regulating our temperature and alleviating cold-related symptoms, but we do have one small study suggesting something called Waon therapy for ME/CFS.

Waon therapy is a Japanese practice that involves soothing and warming the body. In the study, ten people with ME/CFS sat in a sauna for 15 minutes and then laid under a blanket, outside the sauna, for half an hour. They weren't specifically looking at temperature sensitivity, but researchers observed an improvement in fatigue, mood, and performance after therapy.

While this was a small, preliminary study, it shows that heat may be beneficial for people with this condition and provides a starting point for those wondering how to improve symptoms, including the tendency to get chilled.

Short of spending lots of time in a sauna, though, we need to find ways to manage these symptoms on our own. The best way is to prevent yourself from getting overly cold.

If you work, go to school, or otherwise spend time in a place that's frequently cold, you may need to keep an extra sweater handy. On the job, you can ask for reasonable accommodation, which could mean moving your workstation to a warmer area of the building or away from windows or vents.

Warming Up

No matter how careful you are, you're likely to get chilled from time to time. Once the cold sets in, it can be hard to shake.

When your body can't get itself warmed up, you may need to find an outside heat source, such as:

• A hot bath or shower
• Hot water bottle
• Heating products, such as battery-operated socks or mittens
• Electric blankets
• Heating pads, rice bags, or similar microwavable products

Be careful, though! You don't want to burn yourself or trigger heat-related symptoms by trying to warm up too fast, or with something that is too hot. Go slowly and carefully.