Whether you're cold all the time, hot all the time, or fluctuate between too cold and too hot, you're experiencing the common fibromyalgia and chronic fatigue syndrome symptom of temperature sensitivity. What's this symptom like? What makes it worse? What helps? Share Your Story
Hot all the time
- I too have Fibro/CFS and am always hot. This summer has been awful hot,humid and rain. The rain kills me ,some days I can't walk. My clothes also hurt at times. I only wear cotton and I pay a laundry service to pick up and drop off my clothes . They put 3x the normal amount of silk touch downy. I am going to an endocrinologist about the heat reaction. I went through menopause at 42, I'm 50 now and take estrogen and its still hot. I sleep on a towel. I wish they would hurry up and find a cure for this,at least now they believe it is neurological.I spend my summer in y hospital bed w/ the a/c set at 63. It's an awful.
- —Guest bambi
- I can't take the cold but often get chilled. As for the cold or heat my feet are my thermostat if my feet get cold I can't warm up. If They are too warm I start stripping down. I have even Walked straight into a shower with all my clothes on just to get cooled down. When I exercise I have to have a cool towel around the back of my neck or I over heat fast. When I can't cool down I can't function. I feel dead weight frm the shoulders down. Isn't life great?
- —Guest Roberta
i use claritin
- In regard to the cold exposure sensitivity. I break out in hives when exposed to cold temperature and have almost died once from it. For many years numerous medications were tried. I find for years now , Claritin or generic version 10 mgs a day works wonders for me, no side effects either. Once in a great while I might get a hive or two under extreme cold, but it is hard to believe how simple this is to stop 99.99% of the problems. I have stopped it several times just to see what happens and sure enough, HIVEs again after 2 days without it. I do have fibromyalgia and have for years.
- —Guest marie
I felt like I was crazy.....
- I so felt like I was losing my mind! I never told anyone about my pain. I didn't know how to explain it without sounding crazy or at least weird .I finally went to the doctor and told her about my strange pains and freezing all the time. I stay so cold all the time. I don't get along with winter very well so during the winter I stay hugged up to the wood stove. In the summer I have some sensitivity to the heat but still can freeze in the hottest months . Sometimes I get the strangest pains i my legs they kinda run and if I touch something cold or go out into the cold OMGoodness it hurts so bad. Another of my symptoms are parts of my feet will get this really cold pain shooting through and then it feels as something liquid is running down my foot. i of course have the shoulder and neck/back pain too. I do thank you very much this has helped some to ease my worries that other people have some of the same symptoms.
- —Guest maddchick
A treatment for cold sensitivity
- By accident I discovered that my cold sensitivity is hugely dependent on low blood volume/low blood pressure/insufficient electrolytes.
I found this by accident when I was having a very bad flare of CFS and also very bad diarrhea, so I was dehydrated; I was in Austria so I had access to medical grade electrolyte solutions, which are much stronger than Pedialyte etc. which is available here.
It made me less cold, and less prone to the Raynauds symptoms (nail beds turning purple, lips turning blueish, skin getting colder and colder). When I start getting cold for "no reason" (e.g. it's not cold where I am), taking an electrolyte mix helps A LOT… and pretty fast, too, in 10-15 minutes or less.
Taking electrolytes ALSO made me MUCH better when it came to standing up, lifting my arms above my head, moving around… because apparently a lot of my fatigue was due to low blood pressure drops (POTS, postural orthostatic tachycardia syndrome) AND low-salt.
- —Guest Amy
- I have suffered from being too hot, along with excessive sweating, since perimenopause began 12 years ago. I sweat from my head, face and scalp. Can't wear makeup or any kind of hairstyle. I just let my hair grow long enough to pull it up. The medical term for what I have is called hyperhidrosis of the face and scalp. My mother had it, as did my brother and my older sister has it. Since they were never diagnosed with fibro, I have no idea if mine is associated with it or not. All I know is it is MISERABLE! I need air blowing on me at all times. Carry a portable fan with me. I freeze friends out. In the winter I don't even have to turn my heater on in the car most days. I've tried Botox injections in the scalp, a special kind of antiperspirant called Drysol and a medicine called Rubinol. None worked. So what do we do about it? I'm tired of looking like a drowned rat!
- —Guest Marilyn
hot,cold and so on!
- I have been suffering from lack of temp control for a long time. after many test and docs i discover my answer here. Why dont my docs know these things? Im seeing the best neurologist for MS and fibro. NAMASTE'
- —Guest redhigheels
- I can't stand the heat lately. I get very hot even just walking through the house. It's when I sit down I sweat so bad, it's actually dripping down my face, getting in my eyes and mouth. What could that be from?
- —Guest Deftziz
diagnosed with hypothermia in harare zim
- I suffer fms spring was supposed to have come in what was for me ,not others, a very cold winter I did some cold water washing -half way through the morning I developed an icy chest- my wife made me a hot water bottle which I cluchted to my chest all day and propped up in bed all night -next day I went to the doctor who was surprised saying it was hypothermia -spent some hours in a closed car in the sun which was too hot for my wife to get into though I could only feel vague tinglings in my skin -thats how I came out of it and started drinking hot drinks etc -symptoms started again yesterday so I put on many layers an sat in front of a blow heater till I had warmed up till now did not know the link between fm and cold sensitivity -thanks for the enlightenment
- —Guest Adrian Maasdorp
air temperature change
- I thought i was the only too as this symptom was not in any of my material. It is very painful for me to take my robe off to shower. So much so i tend to skip it. another symptom is related as well. When i am moved emotional story. The pilo election of arm hair is very painful it feel like a low voltage charge.
- —Guest Julie
sensitive to both heat and cold
- my biggest problem is that I do not sweat anymore and cannot seem to get help with that. have to be very careful with being outdoors with recent heat wave. But wonder how many others have same problem with not sweating. It does not matter so much what time of year I can get too cold in summer and too hot in winter; so hard to know what to do with both problems. any suggestions
- —Guest skypeople
- I feel that the weather change makes my arthritis more painful rather than the fibro, I have found that rain is the worst.I live in Tasmania, where we have huge frosts in the north, inland a bit, and cold is BAD for me, too, for fibro and especially arthritis, of which I have osteo-arthritis and rheumatoid, from neck to toes. Have been a sufferer of fibrimyalgia for years, and am on a large amount of lyrica for that, it does help, now I am on that larger dose. Love to all my fellow sufferers. xo
- —Guest Isabel
- I can tell just one degree difference in my home. If it's off a degree, either way, I am too hot or too cold. Also, if I move around the house at all, I heat up and start to sweat. When I sit down to cool off, I soon get too cold. Any change in the weather makes me hurt. I try to stay inside when it's very cold or very hot.
- —Guest nancyjean
- im 23 Somtimes im very cold then within minutes im very hot what going on with me?
extreme tempeture of the body
- as far as i can remeber my feet are stone cold to the point they turn purple and hurt so bad, and then some days there so red and hot ready to boil an egg on them, i can still here my mum telling me off thinking i had chill blades in my toes and to put socks and clothes on..... i am like everyone else who cant stand clothes i am 27yrs old and i strip everybit of clothes off and if its a little bit cold i but a thin nightie on so thin its see threw, its become a joke in my family the fact i never keep my clothes on when at home, in the hotter days i get that hot i sweat when no one else is its so embarrassing... but know i dont feel like a alien since i have just discovered others like me!!!!!!!!!!!
- —Guest amneh