‘Thought I was going crazy’ – fibromyalgia patients on the impact of not being able to regulate their own body temperature

[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.

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. Click To Tweet

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.

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.

I cut my hair very short, as I sweat from my head so badly.   The heat makes me weak and nauseous”

“I’m sick of hearing ‘you can't be cold!!’ Trust me I am cold”

“Constantly applying deodorant because I’m scared I smell bad”

“I blame hot flushes on the menopause because people understand that. It’s too difficult trying to get someone to understand it’s a fibro thing for some reason”

 

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). 

“Less clothing. Cold face cloths. Ice packs”

“Wear lots of layering (clothes)”

“A little fan called O2 Cool… it hangs around my neck and at least gives me some air to my face and neck! I’ve been sweating for years now and thought it was still menopause!! I’m 62”

“I just try to accept it”

“I don't know what to do about it, so I just deal with it unfortunately”

“Change clothes to fit how I feel”

“Usually just deal with it.”

“Always wear cooler clothes winter and summer.  Barely wear a coat in winter.”

“Fans, air cooler, lots of layers, lots of blankets, cold washcloths”

“I try to stay ahead of drastic temperature changes. Or I suffer through it.”

“Heating pads and ice packs. Sometimes my body is cold but my limbs are hot.”

“Just deal with it the best I can. Try to always have a jacket or another layer of some sort.”

“I use 72 hour antiperspirant deodorant.  I wear layers. I make sure there is shade, that I have a fan and an AC available somewhere to recover. My friends and family know I’m sensitive to the heat. I drink lots of water to keep my body cool.”

“Wear different layers of clothes”

“Wear t-shirts & leggings with a cardie on standby. Use small fan and cooling water spray"

“I make sure to drink plenty of fluids so I don’t dehydrate as it can happen easily for me.”

“I always have layers prepared to remove or add, fans are a must”

“I keep my home much cooler than others do. My feet are always cold so I may have on shorts and a tank top but I always have warm socks on.”

“Windows open and ceiling on all year round. Wearing layers when up about. Sometimes I can't cope, I can't sleep, or I feel so sick and shivery I have to sleep under duvet at random times of day”

“I use Lyme deodorant and wipes”

“I have a great fan beside my chair”

“I always dress in layers and make sure I have clothes to change into.”

“I wear light weigh clothing and carry a hand fan”

“Part of life dealing with everyday”

“I find ways to keep cooler with various bedding adapted for cooling. It helps with sleep. Certain pillows, mattress covers, and even though I sleep in the same bed as husband he has a huge comforter and I use sheets or cotton quilts to stay cool”

“I turn A/C down and lay under a fan”

“Try and stay hydrated and I always carry a fan with me”

“For summer, I bought a portable air conditioner to help with my home since we don’t have AC. Also, always applying deodorant, drinking water, and taking electrolytes.”

“I don’t go out in public much”

“I just plan ahead by checking the weather and hope for the best”

"I have clothing for home in several thicknesses so I can change or layer as needed"

“Have a fan near the bed, hot water bottle"

“Layer clothing. Pay attention to how long I've been in the heat. My body won't signal that it's too hot until it's too late."

“I sweat alot so I alway's have to have a hat on or the sweat will be in my eyes. I also make sure I have extra clothes to change into”

“Hot water on feet and hands to defrost. Extra layers on body”

“Constantly adding or removing layers. Carry bottles of water to rehydrate”

“I avoid going out during heat waves, excessive humidity.  I also avoid being outside during extreme cold.  Because I live in an area that experiences extremes both ways I have tons of clothes to suit the weather. Excessive heat and extreme cold increase my pain levels.”

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.

“People don’t understand how miserable it is to feel hot all the time. It hurts my body inside and out” Click To 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” Click To Tweet “It's just so embarrassing interacting with people, whilst my hair is dripping wet and plastered to my face” Click To Tweet

“Thought I was going crazy”

“It's just so embarrassing interacting with people, whilst my hair is dripping wet and plastered to my face”

“I find it gets extreme when I'm in a flare.”

“When you are in a lot of pain but you look well it's hard to get across to people how bad this illness really is. Being cold all the time doesn't help”

“Just makes me feel bad”

“It’s embarrassing. My husband always asks if I’m ok”

“I’m almost never comfortable. Something hurts or I can’t get my temp right, if I do feel comfortable for a few minutes, I tend to fall asleep for a few minutes. Sleeping is hard when you can’t get comfortable body or heat wise. It takes hours to get those two things when I try to sleep.”

“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”

“Honestly, it can make me not want to leave the house. 

“It’s important for people to understand its not hot flashes it's literally that my body cannot regulate its temperature trying to explain that is frustrating”

“Nausea and shivering when too cold, nausea and woozy when too hot. Often the only way to deal is to try and nap, wrap up or strip off layers. Stops ability to sleep in summer due to overheating. Tend to become a hermit when overheating is bad in summer. Can't drive when either extreme hits, so again I avoid going out unless I have too. Less socialising as my hygiene isn't what I want, but not enough spoons to bath, or shower all the time”

“People don’t understand how miserable it is to feel hot all the time. It hurts my body inside and out”

“Overheating makes me feel not just gross, but sick as well”

“Find the best way to get through this, there is no answer for us…unfortunately”

“It’s really embarrassing to have done your hair and makeup and have it all ruined within ten minutes of leaving the house. Or not being able to dry or style your hair bc you are hot after a shower, even a cold one.”

“I imagine it's like playing several characters in a play with constant costume changes, or going back and forth between a sauna and a freezer”

“It’s like a hot flush, a sudden surge of heat. Then feeling cold again, like having a faulty internal"thermostat”

“I'm miserable all the time a I'm too hit all year round and when others are fine

“Wears on the nerves…”

“I think it is probably.the worst aspect of Fibro, the pain and unwell feeling that this temperature regulating causes is so so frustrating”

“Because I have to prepare for extreme temperatures I am an avid weather watcher so I know what to expect days ahead of time.  It’s exhausting preparing for what others just take in stride.”

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

2 Replies to “‘Thought I was going crazy’ – fibromyalgia patients on the impact of not being able to regulate their own body temperature”

  1. I am sitting here in the heat of summer and am quite cold. In fact, I just added another layer of clothing and am still cold. My feet are freezing. If I am reading or watching television I usually must cover up with a blanket, but then later I am so hot I can hardly stand it. I have experienced this most of my life. (I am 68 years old and was diagnosed with fibromyalgia in the mid-1990s when it was still often called fibrositis.)

    1. Thanks for sharing Deb! it really is very frustrating. For a long time I didn’t know that so many others experienced this and I struggled to explain my frustrations to others. Although it’s sad, I am relieved to hear others’ stories and to know that I’m not alone. Side note: I also didn’t know that fibromyalgia was called fibrositis back then! I need to do some research! Hope you’re doing well despite the times we’re living in. xxx

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