A bit about me. I have systemic sclerosis, connective tissue disease and sclerosis. Hypovitaminosis and cerebral ataxia. I’m being investigated for fibromyalgia and I wondered if any of you lovely people have problems with temperature regulation. I’m really struggling and when the temperature goes up or down my body just goes crazy. I shiver like it’s freezing when everyone around me says “ it’s a little cold, but not that cold “ and I shiver so much it’s painful. Then opposite, if everyone says it’s nice and warm, I’m sweating and my head pounds and my whole body is hot!
Written by
peppa
To view profiles and participate in discussions please or .
Hi Peppa, yes I do struggle with my temperatures, when it's cold I am in chronic pain all over and have to wrap myself up to keep warm. And when it's hot I struggle as again I am in pain. Hope this helps. We all here try and help each other
Yes, I always say my body thermometer has only two settings sweltering or freezing, nothing in between. I tend to wear layers so I can either peel them off or put them on. I used to adore winter and now I dread it and as for the very hot weather I cope very badly with it.x
I have the same problem with my temperature. I am either burning up or freezing cold. Have been like this for years. Have give mentioning this to the GP as they just seem to ignore me when I mention it.
Yes I have this & I really struggle in summer. One of my earliest symptoms which started many years ago. My doctor just shrugged her shoulders so I've stopped mentioning it. I have cfs/me & fibromyalgia.
You described my broken body thermostat spot on! Virtually hyperthermia freezing or about to self-combust with overheating. Nothing in the middle. It really disrupts my life!
Me too 🙋♀️, it really flipping annoying 🙄. I used to love the summer now I dread it as I get overheated often. I prefer dealing with being too cold and heating myself up then trying to cool down. Even on a lovely spring day everyone around me is experiencing a lovely warm sun were I feel like the sun is crazy hot 🔥 🥵. My favourite seasons are definitely spring and autumn just because I cope better with the weather. I feel hot alot of the time so even in the cold winter days I can actually feel OK as it cools me down lol. I don’t get on with medication so not sure if any helps in that department?? Fibromyalgia really is a complicated beast.
Yes, me too. My husband has given up asking why l am stood outside when it's cold & the heating is on in the living room. Then when it's sunny outside my work colleagues ask why I'm wearing gloves to walk home. My thermostat has broken altogether . Thanks fibro.!! 🥵🥶
I keep a spray water bottle in the fridge for when I have overheated. Spray my feet as they suffer badly and my face and neck then sit in front of a fan.
Yes there will be many members on this site who understand your symptoms. I had this problem for many years and when explaining my symptoms to my GP who said 🙃 I am not sure what that can be. However I pushed to get my symptoms confirmed by a fibromyalgia consultant in London at the Royal college hospital who confirmed that my temperature issues were linked to my illness. I became very embarrassed about my situation because others could see me sweating my skin was clanny and damp feelings throughout my body. I would sit on a chair and once standing up the chair would be wet especially if the chair was plastic.
He told me to take vitamins to support my Inflammatory condition and immune system.
I take magnesium and vitamin D and Zine and vitamin C and vitamin E which does help but didn't stop them all together.
My temperature goes very low and like you I feel very cold 🥶 and then very hot.
He told me to look at my diet and change things which could make me feel worse.
He advised me to check all side effects of the drugs I took for other illnesses I suffered from. And he was correct as a couple created Temperature changes which has now been reviewed and given different medication to support me.
There are many books and information you should read to research your symptoms as we are all do very different with our symptoms at times.
My advise to you would be look at your lifestyle and write down how many temperatures changes you have and show this to your doctor. Request blood tests to confirm if there any changes when these temperatures changes happen. Write down how many flare-ups you have. Looking back at the pattern of this illness has helped my GP understand my life pattern of pain and feeling unwell which has helped me to understand some small changes can make a difference.
I had to consider
My mattress and pressure points
Change my diet
Eat vegetables and strawberries 🍓/blueberries and peppers /banana/beetroot is so good for you and so on. A lot more protein in my diet
Drink more water.
Change to drinking red brush tea because of the benefits of this tea.
Drugs /painkillers (,took myself off them )now use a ten machine for pain.
Listened to CD understanding how pain works with the brain.
Lost weight
Manged my tasks throughput the day.
Reviewed my shoes and the clothing to keep cool .
Started chair 💺 exercise to relax my muscles and ease pain. Stretching exercises throughout the day
My temperature has got better however not gone completely.
I suggest you look at the research into symptoms of fibromyalgia as we are all very different even though it's the same illness.
Good luck ,it's good to understand this illness and the changes that could help you. 🙂 stay safe. Xxx
Absolutely yes! Thermostat is totally kapoot, or wts for short. I cope so much better with cold, really dread summer now when I used to love lounging in the sun with a book.
Sweating is, well, whoever said women don't sweat they perspire (something like that lol) they've obviously never met a fibro woman 🥵 Places I never even knew you could sweat from 😳
Just want too Welcome you too the forum , yep from my own experiences and reading here we can struggle with temperature control , one of the joys of Fibro 🤣xx
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Low temperature 
Cold feet and cold 'pain'?
my body temperature seems to be out of wack ... im either extremely hot or freezing cold
Hot 
extreme body temperature changes
