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10 Tips for Surviving Fibromyalgia in the Summer

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Do your fibromyalgia symptoms seem to get worse in the summer months or anytime you get really hot? Does your fibromyalgia pain increase when you get overheated? Are you less able to tolerate warmer temperatures now than before you developed fibromyalgia? If you answered “yes” to any or all of these questions, you’re not alone. Fibromyalgia and heat intolerance often go hand-in-hand.

Fibromyalgia causes us to be hypersensitive to a wide variety of stimuli. Best known for our hypersensitivity to pain, people with fibromyalgia can also be highly sensitive to chemicals, noise, bright lights, smells and yes, even temperature. A 2011 study at the University of Wisconsin-Madison confirmed that people with fibromyalgia had significantly increased sensitivities to many types of stimuli in the environment.

Fibromyalgia and Heat

Because we mostly tend to hear about people with fibromyalgia being sensitive to cold weather, I used to think I was odd because heat bothers me so much. But as I looked into it further, I learned I wasn’t that unusual after all. Most people with fibromyalgia tend to fall into one of three temperature-related categories:

  • hypersensitive to cold
  • hypersensitive to heat
  • hypersensitive to extremes of both cold and heat.

I’m definitely in the heat-sensitive category. Cold weather doesn’t really bother me. In fact, I’m usually at my best when the weather turns cold. But when the temperature goes above 70º, I get uncomfortable; when it goes above 75º, I’m downright miserable.

What I experience is much more than the kind of discomfort the average person feels when they get too warm. I feel like I’m being suffocated and am fighting for my life. It feels like every tissue in my body swells and it takes great effort just to breathe. My skin turns bright red––especially on my face, neck and chest. My allodynia (feeling pain from non-painful stimuli) goes into overdrive. Anything touching my skin, including my clothing, becomes very painful. I start getting lightheaded, can’t think clearly and generally just can’t function on any meaningful level.

Unfortunately, once I’ve gotten overheated, just cooling off is not enough to get me back to “noormal.” At best, it takes several hours before I start feeling halfway decent. If I’ve gotten seriously overheated for a significant period of time, it can take anywhere from several days to several weeks for me to fully recover.

It may sound strange, but sensitivity to heat has been the most life-limiting of all my fibromyalgia symptoms. As bad as the pain and fatigue can be, it’s the heat intolerance that keeps me virtually tied to my home where I can control the temperature.

Research on Fibromyalgia and Heat Intolerance

A great deal of research has been done on other fibromyalgia symptoms like pain, fatigue and sleep problems, but very few studies have focused on our hypersensitivity to heat and cold. There was, however, one very interesting 2008 study, published in the journal Pain, that compared heat and cold thresholds in women with fibromyalgia and healthy controls. They conducted five consecutive trials with each group, increasing the heat and/or decreasing the cold each time. Not unexpectedly, they found that the fibromyalgia group experienced pain at lower thresholds than the healthy group. But what surprised the researchers was that while the healthy group was able to adapt to the temperature changes and tolerate higher/lower temperatures as they progressed through the trials, the fibromyalgia group actually became more sensitive to the temperature changes and experienced pain at even lower thresholds.

There are a few theories as to what might be causing us to be hypersensitive to heat and cold, such as thyroid problems, autonomic nervous system dysfunction or excessive arteriole–venule shunts found in the palms of fibromyalgia patients that help control blood flow and thermoregulation. But as yet there has not been enough research done to even come close to pinpointing the cause.

As slow as the medical community has been to recognize that temperature regulation is a problem for people with fibromyalgia, they’ve been even slower to do anything about it. There are no fibromyalgia treatments that address our hypersensitivity to heat (or cold). Therefore, we’re left to fend for ourselves and do the best we can to try to find ways to cool off when summer temperatures soar.

10 Tips to Help You Stay Cool

Because getting overheated affects me so badly, I’ve spent years searching out and fine-tuning ways to keep cool. Following are the 10 most helpful tips I’ve found:

  1. Stay hydrated. People with fibromyalgia tend to get dehydrated easily, so keep a cold drink––preferably water––handy to sip on throughout the day.
  2. Avoid alcohol. It can cause you to lose body fluids more quickly and also tends to make you feel warmer.
  3. Wear loose-fitting clothes made of lightweight, breathable fabrics. Try to stick to lighter colored clothing. Although dark colors may be more slimming for your appearance, they also absorb more heat.
  4. Even if your home is air conditioned, having a fan––ceiling or otherwise––in the room will help it feel cooler. This has the added bonus of helping to reduce your electric bill since you don’t have to set the thermostat quite as low.
  5. Soaking your feet in cool water (not ice water) can help cool you off.
  6. For those times when it feels like your whole body is about to burst into flames, taking a cool bath or shower can help you cool down quickly.
  7. Try using a cold pack or an ice bag. You can make your own ice bag by putting a few ice cubes in a plastic bag. Wrap the bag with a soft cloth and apply to whatever parts of your body are the warmest. I generally move it around so no one spot gets too cold.
  8. I always keep a small 8 oz. bottle of water in the freezer. Whenever I have to go out in hot weather, I put the frozen water bottle in a small insulated pouch that fits into my handbag. Then if I find myself in a situation where I’m getting too warm, I have my makeshift cold pack handy to help me cool down.
  9. You can purchase small, handheld, battery-operated fans that are handy to keep in the car or carry with you when you go out in case you’re starting to get uncomfortably warm. Many are inexpensive and some have the added option of filling them with water so the fan sprays a fine mist that will cool you down even more.
  10. Before you go anywhere in the summer months, take a few minutes to plan ahead. If there’s any chance you may find yourself stuck somewhere that is too hot for you, be sure you take your cold drink, ice pack, handheld fan––whatever you need to keep yourself as comfortable as possible.

Are you hypersensitive to heat? If so, please share how it makes you feel, how it affects your life and/or any tips you’ve found that help you stay cool.


Karen Lee Richards is ProHealth’s Editor-in-Chief. A fibromyalgia patient herself, she co-founded the nonprofit organization now known as the National Fibromyalgia Association (NFA) in 1997 and served as its vice-president for eight years. She was also the executive editor of Fibromyalgia AWARE magazine. After leaving the NFA, Karen served as the Guide to Fibromyalgia and Chronic Fatigue Syndrome for the New York Times website About.com, then worked for eight years as the Chronic Pain Health Guide for The HealthCentral Network before coming to ProHealth. To learn more about Karen, see “Meet Karen Lee Richards.”


Resources:

Wilbarger JL, Cook DB. Multisensory hypersensitivity in women with fibromyalgia: Implications for well being and intervention. Arch Phys Med Rehabil. 2011 Apr; 92(4): 653–656. doi: 10.1016/j.apmr.2010.10.029

Smith BW, Tooley EM, et al. Habituation and sensitization to heat and cold pain in women with fibromyalgia and healthy controls. Pain. 2008 Dec;140(3):420-8. doi: 10.1016/j.pain.2008.09.018.

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One thought on “10 Tips for Surviving Fibromyalgia in the Summer”

  1. LLee27 says:

    Dear Karen,

    I have not officially been diagnosed with FM, rather ME/CFIDS; although I occasionally have small,isolated FM pain attacks and pronounced imbalance problems. However, am overly- sensitive to heat or should I say humidity — can’t breath and get chest pain. Have had extensive heart and lung checks and nothing shows up. I deduce it is swelling/inflammation. Any thoughts?

    Have already adopted most of your suggestions for keeping cool and it’s nice to know am not alone! LL

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