Does anyone find the need for direct heat? I have real temperature control problems but daily find myself craving the hot blast of a fan heater on me. At time’s when I’m especially not good, it can be almost like a craving/ addiction.
Sometimes it’s because if I have this” inner” cold feeling and I have to get into a hot sweat to stabilise.
Sometimes it’s like it helps to relax me and is soothing.
I now have to have a portable radiator on all night ( chaser then having whole house central heating on all night) but if I’m in a worse phase I can wake up cold, then immediately in a hot sweat. I know the only thing that will help me settle is to sit in front of a fan heater and then go back to bed with a heat pad.
Irony is when I move around I get super hot.
It can make going out difficult also as have to take all these layers and different clothes. I rarely go to other people’s houses but it would be hard for me as I can’t control the temperature. Likewise I don’t stay on hotels but if I did on a very rare occasion, it’d have to be something where you can control the room temperature with a room thermostat eg premier inn. You don’t get this on a more characterful hotel.
I find I’m generally better temperature wise in super hot Mediterranean summer heat but it has to be at least 27 in day and warm nights.
I know it is one of the symptoms of CFS poor temperature control but I sense it’s not perhaps such a common one?
Be interesting to hear if anyone else experiences this?
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winter2013
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I also have issues regulating my body temperature - I’m the one always wearing at least two more layers than anybody else in the room (and still feeling cold!).
It’s also fairly common to find me snuggled, fully dressed under 13.5 tog duvet on the sofa in the living room of an evening - with the central heating also on (I find the duvet is cheaper and more practical than a fan heater...😉).
I solved the night time warmth issue by using an electric under blanket for about 8 months of the year. I love it - as I can actually get out of bed in a morning feeling normal.
Btw, Last time I went away (which was at Christmas), the electric blanket went too!
Hi Regalbirdy I am always cold and have hot water bottle on my feet (sometimes move behind my head) and an electric blanket which I can control on and off. I also have hairdryer by my bed because I also suffer from hyperhidrosis (excessive sweating) so need the hairdryer to blast myself with heat and to dry around my neck and chest. I have towels tucked down my front and behind my neck and on a cold or bad night need to change my clothes several times a night. That's just the night. In the daytime, it's often worse, it's a nightmare going out anywhere because I need to have 5 changes of clothes (that would be if I'm out for several hours which is rare and travelling). Change of clothes for me = vest, underlay beneath my jumper, leggings and sometimes outer trousers. I also need the heating on to dry my clothes. In the summer it's much better, less sweating, nice warmth and clothes can dry in the sun anyway and there are fewer of them (well, once the temperature hits the 70s!)
I've been told that the HH is part of dysautonomia where the ANS is malfunctioning.
I bought a Delonghi oil filled electric radiator for the bedroom and I sometimes need a hot water bottle as well as wearing gloves and socks in bed. I get attacks of going very cold which can last hours. Then suddenly, and often in the middle of the night, I'm red hot and have to get up.
In addition to ME/CFS, I've been diagnosed with Reynauds disease and have really poor circulation where my hands go white. I have to wear gloves a lot.
Yes hot water bottle, sometimes socks, electric blanket often, and hairdryer by my bed. I have hyperhidrosis which means I sweat excessively but even more when it's cold. In the daytime, it's often worse, it's a nightmare going out anywhere because I need to have lots of changes of clothes . The hyperhidrosis just means I am walking around in wet clothes and it's super distressing and uncomfortable. In the summer it's much better, less sweating, nice warmth and clothes can dry in the sun anyway and there are fewer of them (well, once the temperature hits the 70s!)
I've been told that the HH is part of dysautonomia where the ANS is malfunctioning.
I also suffer with poor temperature control but at the other end of the spectrum. I sleep with a fan on even in this cold weather as I overheat quickly and this makes me feel worse. Bedroom windows open all day/night. To others my room is freezing but for me it's the only place the temperature feels right. Strange how we are all affected in our own little way and find things to help us manage x
That is me all over! I am always cold and have hot water bottle on my feet (sometimes move behind my head) and an electric blanket which I can control on and off. I also have hairdryer by my bed because I also suffer from hyperhidrosis (excessive sweating) so need the hairdryer to blast myself with heat and to dry around my neck and chest. I have towels tucked down my front and behind my neck and on a cold or bad night need to change my clothes several times a night. That's just the night. In the daytime, it's often worse, it's a nightmare going out anywhere because I need to have 5 changes of clothes (that would be if I'm out for several hours which is rare and travelling). Change of clothes for me = vest, underlay beneath my jumper, leggings and sometimes outer trousers. The hyperhidrosis just means I am walking around in wet clothes and it's super distressing and uncomfortable. People just look at me oddly, but I have got changing down to a fine art and have done it in public places because it's easier than sitting on a toilet which is really uncomfortable and they never have anywhere to hang my clothes. I also need the heating on to dry my clothes. In the summer it's much better, less sweating, nice warmth and clothes can dry in the sun anyway and there are fewer of them (well, once the temperature hits the 70s!)
I've been told that the HH is part of dysautonomia where the ANS is malfunctioning.
Thanks for replying foggy and horrid for you but at least I’m not alone!! I find it hard enough going out but this clothes issue / temperature control makes it so much worse! Like you I’m better when weather is warm and stable x
Yes it's reassuring to know we're not alone, horrid though it is. I would have responded sooner except I've only just found the ME forum. Sudden changes of temperature affect me to. But yes, roll on summer! x
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