[Feature image: Yes that is me sweating like I\’ve run a marathon. No I didn\’t]

People living with fibromyalgia have described how the often overlooked and embarrassing symptom of temperature dysregulation negatively impacts their day to day life, in a survey conducted by this blog – The Invisible F.

Temperature dysregulation refers to the body’s inability to maintain a normal temperature, resulting in patients feeling too hot or cold, despite no changes to the surrounding temperature. 

Many fibromyalgia patients struggle in silence with temperature dysregulation but the shocking lack of research into fibromyalgia, and lack of attention and support from the medical fraternity and mainstream media mean that we’re far behind in the search for a cure and relief for fibromyalgia-related symptoms.

[bctt tweet=\”56 of the 58 respondents said they struggle with regulating their body temperature, for example, sweating excessively, and feeling cold when it\’s hot outside, or feeling hot when it\’s cold outside. \” username=\”AliApow\”]

You may be wondering what’s so bad about not being able to regulate your body temperature. This is why research is needed. I struggle with it massively and I wanted to find out if other fibromyalgia patients also struggle, to what extent and how they deal with it.

In July I published a survey through my blog The Invisible F, asking people with fibromyalgia to share their experiences. 58 people from around the world responded.

Here’s what I found out.

All 58 respondents had a fibromyalgia diagnosis. 57 of them were women. Their ages ranged from 18 to 64.

56 of the 58 respondents said they struggle with regulating their body temperature, for example, sweating excessively, and feeling cold when it\’s hot outside, or feeling hot when it\’s cold outside.

Symptoms

72 percent of the respondents said they sweat excessively during a particular time of the day.

Nearly 57 percent said they feel hot when the surrounding environment is cold, while half said they struggle with their body temperature changing too rapidly.

Half of all respondents said various parts of their bodies felt both hot and cold.

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When asked which symptoms affected them the most 62 percent cited sweating excessively during a particular time of the day; while 6 percent said they were unsure of whether they were hot or cold.

The second most commonly experienced symptom was body temperature changing too rapidly – in 36 percent of those who answered. 

Impact

I asked the survey participants how temperature dysregulation problems/symptoms like excessive sweating affect them on a daily basis.

62 percent of respondents said the symptoms make them feel unwell, while 58 percent said their self confidence is affected.

48 percent said they have to constantly change their clothes because they become drenched in sweat or uncomfortable temperature wise, while  

60 percent said they always had to be prepared to add or remove extra layers of clothing when out. 

34 percent of respondents said that people stared at them in public because they sweat excessively.

Read the respondent\’s own thoughts below (click on the plus sign) to see how this seemingly harmless symptom affects us.

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I’m very familiar with glaring stares from people while I’m out because of excessive sweating, even in cold temperatures (winter included). As soon as I mop myself up, beads of sweat reappear almost instantly. It is highly embarrassing especially in social situations, when my clothes too are drenched  in sweat like I’ve run a marathon. 

I asked the respondents how they cope with the problems caused by temperature dysregulation. They cited a mix of things like carrying portable fans, wearing layers of clothing and adapting to what their bodies need, staying hydrated and wearing special anti-perspirant deodorant (right now I use Triple Dry). 

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To close the survey I asked the participants to share anything more on how the problem affects them.

Some of the responses really stood out for me because they captured the wide-ranging impact that a symptom so seemingly insignificant can have on patients (including their mental health), when the underlying condition is disbelieved, downplayed and ignored by segments of society.  Some of these are highlighted below in the drop down menu.

[bctt tweet=\”“People don’t understand how miserable it is to feel hot all the time. It hurts my body inside and out” \” username=\”AliApow\”]

[bctt tweet=\”“Change of seasons is really difficult because my body can\’t keep up with the back and forth temperatures from day to day. It scares me sometimes knowing that my body isn\’t able to manage something so basic”\” username=\”AliApow\”]

[bctt tweet=\”“It\’s just so embarrassing interacting with people, whilst my hair is dripping wet and plastered to my face”\” username=\”AliApow\”]

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Hopefully sharing this little research sheds some light on what we with fibromyalgia experience on a day to day basis. As I’m writing this, I am dripping with beads of sweat (it is 14 degrees celcius outside) despite my feet and hands being extremely cold. 

I too use most of the methods mentioned by the respondents to manage as best as I can. I always carry a washcloth, and pack deodorant and/or wipes when I leave the house. It is sad that on top of dealing with debilitating pain, fatigue and a slew of other symptoms, we must also grapple with yet another symptom that contributes to us feeling unwell.

I\’d like to thank everyone who took time to answer my little survey so we can shed light on how this fibromyalgia symptom affects us. Hopefully it will help to raise awareness.

I leave you with a comment from one of the respondents: “Know that you are not alone.”

Gentle hugs x