Cold Survival With Fibromyalgia & Chronic Fatigue Syndrome

Stop Getting Chilled!

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A common symptom of fibromyalgia (FMS) and chronic fatigue syndrome (ME/CFS) is temperature sensitivity. 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. With a little planning, though, you may be able to alleviate the worst of what cold weather means for your illness.

Getting chilled is a problem for a couple of reasons: first, we can have a really hard time warming up; second, 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 face, in a 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, keeping 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 up the feet. 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 tissue may be damaged. That sets it apart from FMS and ME/CFS, which don't involve the color change and tissue damage. If you have Raynaud's symptoms, be sure to talk to your doctor so you can be properly diagnosed and treated.

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.

Some ideas for heading off the chills include:

  • keeping your feet covered during cold weather
  • dressing warmly, especially in layers, because dressing too warmly can trigger the symptom of heat sensitivity in some
  • drinking hot beverages
  • eating hot foods like soup and oatmeal
  • bundling up before going out in the cold
  • warming up your car before you leave home, especially with a remote starter
  • keeping your environment warm
  • having things like blankets and slippers handy

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 work station 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.

Sources:

Brusselmans G, Noqueira H, De Schamphelaere E, Bevulder J, Crombez G. Skin temperature during cold pressor test in fibromyalgia: an evaluation of the autonomic nervous system? Acta anaesthesiologica Belgica. 2015;66(1):19-27.

Soejima Y, et al. Effects of Waon therapy on chronic fatigue syndrome: a pilot study. Internal medicine. 2015;54(3):333-8. doi: 10.2169/internalmedicine.54.3042.

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