Temperature Sensitivity in Fibromyalgia & Chronic Fatigue Syndrome: Beating the Heat
Temperature sensitivity is on the symptoms lists for both fibromyalgia and chronic fatigue syndrome. Some of us are especially sensitive to cold, while for others heat is the worst. Some of us have problems with both.
As things heat up outside, my hands and feet puff up and ache, and I tend to overheat and have trouble cooling down. I frequently soak my feet in cool water (but not too cold -- that makes them hurt, too!) Last summer, I discovered some great products that help cool the body, thanks to an article from About.com Multiple Sclerosis Guide Julie Stachowiak: Top 10 MS Cooling Products.
I try to dress in lightweight, natural fibers in the summer, and I keep extra layers or a change of clothes handy, especially in the evening. Are you temperature sensitive? What helps you stay cool in hot weather? Take the poll, and leave a comment below!
Comments
I am always hot. I work in a big bakery, at the cool end of the building. In winter it’s below zero outside and I have to have the fan and aircon on. In summer it can be 45 degrees Celsius outside and I have to have a bucket of iced water and a cloth to wet myself down, or I’m sure I’d pass out.
I cannot tolerate either heat or cold. Cold causes me fever and several myofascial pain which can last for weeks after just minutes of cold exposure (even with five layers of clothing). Heat makes me worn out and can trigger a life-threatening adrenal crisis.
Luckily I’ve been somewhat helped by baclofen, a muscle relaxant which has some temperature-stabilizing properties (and also helps the trigger points).
My aunt (my mom’s sister), my mom and I all three have fibromyalgia. I have also been diagnosed with chronic fatigue syndrome.
My aunt and I are EXTREMELY sensitive to heat. Heat makes both of us terribly sick. We run ceiling fans even in the winters (she lives in FL and I live in the central South). I try to keep the temp in my house at a constant 68 – 70 degrees year round…above that I get deathly sick.
My mom on the other hand can’t tolerate the cold and wears long sleeves even where it 90+ outside. My aunt and I nearly pass out when we go in her house! She keeps her house at 78 degrees.
If it’s over 55 I am too hot. I wear cotton clothes and natural fibers. I frequently wipe my wrists and ankles with cool water, and or mist my hair and let it evaporate. I use a cuddle-ewe pad all year round, it seems to keep me cool in smmer and warm in winter. If I get too overheated, I take a warm shower then turn the water cooler. My doctor says that for some of us in the heat the blood vessels expand so as to expose more blood to cooling air. This leads to dizziness and headaches and other things so the best thing to do is cool down and contract the blood vessels gently. Humidity really makes me ill, and I try and make sure I drink a LOT of water and stay hydrated.
I have a very narrow comfort zone. Below 50 and my hands and feet are like slabs of meat in a cooler – such a pretty array of colors, too. Above 75 I go into heat prostration. Every bit of me throbs, swells and sweats. I get headaches easily above 75, too.
I’m always running hot from the knees up and cold from the knees down. So, I dress appropriately – half warm and half cool. Sometimes in bed at night, I lie almost naked from the knees up, with a heating pad on my feet and piles of covers.
I am very sensitive to any extreme temperatures, but I do much worse in the heat. I cannot garden nor do outside activities for any long period of time. I pace myself in everthing when it comes to doing outside anything in the heat. Also extreme cold is very difficult for me. I am a native floridian who has had to live in Maine for over 5 years now due to not being able to tolerate Miami Heat!
I miss home ofwhich I will return this summer for my kids sake 
but I need all the prayers I can get to make it through the heat I will have to deal with. All our family & support is in Florida & its my kids turn now to flourish, so I want to be close to them even if I have to suffer some heat! Thanks for your site! love, Ana
I’m sensitive to both ! The worst part of it…I live in the Southern Nevada desert and my air conditioning on my SUV isn’t working this year ! Can’t afford to fix it either. This means trying to run errands really early, or at night. Biggest problem, I don’t see to well to drive at night ……UGH !!
I feel better in the heat. Cold or constantly fluctuating temperatures make me feel horrible! I get migraines when the temperatures constantly go up and down. Unless I’m having a hot flash, I’d rather be out in the heat. Even our air conditioning is set at 76 degrees. Any colder and I’d have to bundle up.
edward 29, we are almost the same!
My feet get cold when I sleep, so I need to put a comforter on them, even in the summer. However, I can not stand to sleep in socks! Go figure.
I never understood this pnenomenon. I am hot, I am sweating, but my legs and upper arms are cold! When everyone is grabbing for a sweatshirt, I don’t want one. However, if I were out in that weather for an extended period, the cold would hit and I would be in pain. It is so weird, and I have NOT been able to figure this out!!!!
How can I have hot and cold spots all over my body and be sweaty at the same time???!!!!! If I do get very chilled the consequence for me is achey joints.
I am going to look at one of those vests in the related article. I do very poorly in the heat, but need to take my kids outside!!!
I am usually hot. I know we should raise the temp of the a/c in the summer but I just can’t. I keep the house cool, sleep with a ceiling fan on and big fan on a stand going. I also go in the pool before bed. I feel really sick if I have to go out in the heat and the humidity is really bad here in Southern Ontario.
The humidity makes me extremely ill. I live in Orlando and the humidity is horrible here. It is especially bad on days when the rain is going to begin but hasn’t started yet. I feel fatigued, my eyes swell and my throat tightens. I can get bad headaches, I feel dizzy and nauseous and have no idea why the humidity does this to me.
I’m sensitive to both. When I move from a cool spot to a heat spot, I always feel nausea. In a bat physical condition, I vomit.
But in Japan, temperature sensitivity is not a symptom of fibromyalgia or CFS. So, doctors determine that I’m not a CFS patient.
Are there people who have temperature sensitivity like me, and is a CFS patient?
The heat and humidity make me extremely ill. I have noticed it more this summer, but we live in central Texas where the 100+ temps started in early June.
I get dizzy, nauseated, headaches, and hurt all over.
We’re building a house and living in a travel trailer so keeping cool AND staying sane is a challenge.
There’s really not much to do in the RV and I have to come in after about 10-11 in the morning.
I drink a lot of fluids…mostly water, and I’ve found that adding a little apple cider vinegar to the water is a good thirst quincher as well as just being all around good for you.
Pain pill and muscle relaxers!!!! And Rest!
Any other ideas would be welcomed…