Too hot, too cold - Fibromyalgia and temperature regulation

Because I've had Fibromyalgia and ME for nearly 10 years now, I don't tend to talk about it very much on my blog. Because I feel like I vent about a number of things my health woes seem like a step too far. But someone reminded me recently that talking about it helps people understand illnesses that are not very well understood. (Thank you Vicky!) I'm going to try to talk about my health (mental and physical) every couple of weeks ongoing.

too-hot-too-cold-fibromyalgia-temperature-regulation // www.xloveleahx.co.uk
People with Fibromyalgia will often have trouble regulating their temperature, which means we tend to veer from too hot to too cold and back again with very little just right.

There are dozens of different symptoms to Fibro and not everyone will get the same ones - it's kinda like the world's crappiest lottery. A common symptom of Fibro and other chronic illnesses, though, is a wonky internal thermometer.

On bank holiday Monday James and I went for a walk in some local woodland. It was very humid day, so I was sweating easily, even under the cover of the trees. We walked for about 30 minutes at a gentle pace as there's still some instability to the ankle I sprained. The air was so moist it felt like I was breathing in soup and I was looking forward to getting home to cool down. We got back and within a couple of minutes of inactivity I was freezing cold, shivering and covered in goosebumps. This lasted a couple of hours, then I felt too hot for a short while, followed by another period of huddling up under my blanket. I've always got a blanket within reach as my temperature is always up and down no matter the time of year. It takes me hours to get to sleep at night as one minute I'm too hot, the next too cold. I flip the duvet on and off me so many times if I was hooked up to the National Grid I'd create as much energy as a wind turbine. 😝

Leaving the house is generally fraught with anxiety, especially if I'm going out for the whole day. I never know what to wear. At the very least I have a large scarf in my bag so I can warm up, and I've also started carrying a folding hand fan around with me in case I get too hot. If I'm with James I can take a choice of clothes with me in the car, but when I'm on foot and carrying a bag around it's anyone's guess what to include. The 'Goldilocks zone' for me - the perfect temperature - seems to sit between 15-20 degrees C, but even that is subject to change. I can pick up a chill that'll last for hours on a hot day with a cool breeze. I suffer in really hot weather and I suffer in really cold weather. There isn't a lot of the time when my body is happy with the temperature. It's one of many Fibromyalgia symptoms that makes life challenging for me.

Here's a very interesting article which explains some of the science behind Fibromyalgia and the struggle to regulate temperature.

Thanks for reading. Leah xoxo

19 comments

  1. I do think we need to talk about our illnesses more. People need to understand what it's like. Yeah we may look ok but we don't feel it.

    I hate this. One minute I'm sweating and the next I'm shivering. It's weird though cause when I'm too hot and sweat my skin is usually cool to the touch.
    Xx

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    1. We definitely need to talk about it. I always worry about people thinking I'm a moany old cow, but I shouldn't feel like that because there are so many people who need to feel less alone.

      I get that too - boiling hot, but clammy to the touch. It's very odd just how much goes wrong with Fibromyalgia. xx

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    2. That's why I started doing more posts on chronic illness although I don't have as much reach as other bloggers. But at least I'm putting it out there to hopefully help others.
      Xx

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  2. Ever since I became ill, I've struggled with my body temperature, too. I'm almost always roasting hot, even during the Winter when it's dropped below freezing. I have my ceiling fan on high all year round, and can often go out in Winter in a dress with just a cropped cardi over it! It's ridiculous. I get over-heated really easily so when I'm out and about, I just feel like a sweaty mess, and sometimes I get so overheated in shops, restaurants, venues etc I start feeling nauseated. My Mum reckons it's similar to hot flashes. Now and then I go the other way and get deathly cold, and can't get myself warm again, but I'm usually too hot. I never had a problem with my body temperature before I developed chronic pain, so when I got diagnosed with fibro last year, I was relieved to finally have a reason for it, but having a faulty internal thermostat still sucks! I could definitely do without it. I completely sympathise with you for having to live with it. I also agree it's important to talk about illnesses to help people understand them more, so definitely keep writing about it! xx

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    1. How did I miss that you'd got diagnosed too?! Congrats on getting an answer but commiserations on joining the club.

      I mostly tend to be hot too, but when it's very cold and windy I can get a chill that lasts all day. I have to be so careful. It's funny because even in winter I rarely do my coat up. I remember James and I going to a beach in January and I had no gloves and my coat open and it turned out with windchill it was about -6!! I might not have felt it then but I did later. ;) I'm always asking James "Is it hot/cold or is it just me?" as I never know any more.

      I'm going to try to talk about things more often. After being diagnosed with joint hypermobility last year that made a LOT of sense out of my long history of sprains and injuries so I'll talk about that next. xx

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  3. Hi Leah, My problem is how my body reacts to the weather/temperatures. I've mentioned before how dampness can make my body try to twist me into a human pretzel. It's utterly horrible. Oddly enough when I was younger I felt cold all the time. I mean seriously, all the time. I would be the one wearing a jumper with a cardigan on top on a hot summers day :) The older I get through I seem to be going in the opposite direction :/ It's more about the weight of things though. If I could get away with it I'd walk about naked to avoid the pain caused by the weight of clothes on my bones (scary thought! Not happening! I'd trip over my boobs for a start, God was too generous and I don't have actual legs, more long-ish ankles lol) I'm sorry I've been missing honey, life is messing with me it really is. I'm starting to feel as if I should just dig a hole and hide out for the rest of the year. Arthritis is winning lately and I just recently lost a dear friend at work too, we'd worked together for almost 11 years and we were buds. It's so not fair. I've cried a few times but I know it hasn't hit me properly yet. It's hard to keep up my usual happy, smiley mask I wear for the world but I've done it for so many years it's become a coping mechanism. Move along world nothing to see here, just a happy smiley person. Good grief! Enough of my moans :/ Anyway, I'll try to give myself a shake honey and be around more often. Huggles always xxx

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    1. Oh hell, I'm sorry about your friend. Did they die? Never apologise for being missing, it' hard enough dealing with our own stuff sometimes without taking on other people's stuff too. When you're trying to survive that's what happens and it's OK. I'm sorry the RA has been making your life a misery. I know what you mean about clothes. There are some fabrics I can't bear to ear. I basically live for soft jersey and cotton fabrics. Everything else is too rough or too heavy same for shoes too. That's why I live in my Skechers - they're so comfortable and they're virtually weightless too. Have you got any? Big hugs. xxx

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  4. Hi Leah, I’m glad you are talking about it too. I’d never heard of fibromyalgia before reading your blog, so I’m glad you are raising awareness xxxxx

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    1. Thanks Christy! I hope you're enjoying having Guy back home and he's full of beans after his travels. xxxxx

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  5. Before I finally got to a neurologist, I was thinking I either had fibro or MS. I run cold/hot and have chronic pain from waist to toes. I get stabbing jolts in my legs and general numbness. It ended up being nerves in my neck. The test for that involved shooting my legs with electric shocks that hurt so bad I cried. It just sucks that there are no answers for people who suffer with pain 24/7. The side effects of the drugs they offer are more horrible than the pain.

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    1. Ouch, those tests sound terrible! I know what you mean about the medication they put you on, too. They put me on an anti-epileptic for the pain and it was horrible. Most of the drugs they've ever given me I've stopped taking. The only 'cure' for my chronic pain is to do less, live a smaller life. I'm so sorry you have this crap too.

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  6. Keep talking about your illness, I have a colleague with fibro and through you I understand some of his issues. I also have been able to help him, as he was only diagnosed late last year. XOXO

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    1. That's good to hear. I hope he's OK to carry on working. Doctors say it's not progressive, but that's a load of bullshit, frankly. Mine has gotten worse year on year and it has done the same for many of my friends. If he has great support in his life like you and others he'll be able to face whatever changes come his way. xxxx

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  7. Ty for posting this - I have a holding diagnosis for Fibro and am waiting to see the consultant to see if we are adding rheumatiod arthritis to that too so I'm all new to learning about it all. You and I seem to be temperature twins for the sweet spot we are comfortable in.

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    1. I hope you get your answers soon. <3 I remember my 4 years of being undiagnosed and it was horrible to have so much wrong without an official reason.

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  8. You should talk about your illness if you feel it appropriate. I can't relate but I imagine that it normalises it, if that's the right word. It's comforting to know someone else in the world feels the same way.

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    1. Thanks lovely. <3 Yeah, normalising it is good, both for me (so I stop beating myself up for not being superwoman) and for others who are struggling, too.

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  9. Thankyou for sharing this post :) I also struggle with temperature sensitivity because of my fibro. I get hot and flustered so easily and it makes me feel drained of energy and fatigued as a result. It happens to me a lot too at night when I'm trying to get to sleep. It's been stressful in the past when I've been the only one in the car or in a room that is so hot that I felt like I'm gonna melt and everyone else is fine so no one wants to open the window to let some cool air in. It's really frustrating how quick I can go from being fine to too hot! x

    Sarah | Raiin Monkey

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    1. Thanks Sarah. I was just on a caravan holiday and my hubby and I shared a tiny twin bed room which was hell on boiling hot days. I had to explain to him that the air was so moist it was literally hurting my chest and he could hear me wheezing because of it. I had the window open with no covers on while he was under the duvet, haha. I always have a blanket with me in case I get too cold because I can't always control the environment. As you say, if other people aren't feeling hot or cold you have to lump it. xx

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