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Adrienne Dellwo

Temperature Sensitivity in Fibromyalgia & Chronic Fatigue Syndrome: Beating the Heat

By June 8, 2009

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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!

June 8, 2009 at 2:05 am
(1) Stuart says:

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.

June 8, 2009 at 4:50 am
(2) Maija Haavisto says:

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).

January 28, 2011 at 8:37 am
(3) may says:

I also have extreme intolerance to either heat or cold… haven’t gotten any help from my doctors so far… who prescribed baclofen to you? I am hoping to find a doctor who is familiar with treating temperature change intolerance, any suggestions on how to go about finding one?

February 9, 2011 at 6:42 pm
(4) leslie says:

did u ever find a doctor

June 8, 2009 at 8:58 am
(5) Bamasteelmagnolia says:

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.

June 12, 2009 at 3:28 pm
(6) Mummylady says:

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.

June 12, 2009 at 3:42 pm
(7) Gail says:

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.

June 12, 2009 at 4:27 pm
(8) edwards29 says:

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.

June 12, 2009 at 6:24 pm
(9) Ana Cornell says:

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

June 13, 2009 at 5:38 am
(10) Andrea says:

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 !!

June 16, 2009 at 12:13 pm
(11) Anita says:

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.

June 17, 2009 at 1:33 am
(12) Valetudinarian says:

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!!!

June 18, 2009 at 8:02 pm
(13) Donna says:

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.

July 3, 2009 at 11:49 am
(14) krystal says:

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.

July 15, 2009 at 5:58 pm
(15) Nagai Tomoki in JPN. says:

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?

July 19, 2009 at 5:40 pm
(16) scottiesgal says:

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…

April 29, 2011 at 5:22 pm
(17) Jesuis says:

I became allergic to cold spontaneously when I was 28 yrs. old. Hives, urticaria and angioedema. I am now 53. In the last 5 years or so, I’ve become increasingly intolerant of heat and humidity… mostly humidity. I start sweating and can’t stop until I get into a more moderate environment. I also feel nauseous and dizzy.

I have some autoimmune problems that my rheumatologist will not put a name on. I’ve had joint problems since I was 16, have had lumbar fusion and knee replacement. I am in chronic pain, and I never know what will hurt next. But I think my worst symptoms are cold and heat intolerance!! I have lived in CT all my life but feel I need to move to Southern California. I built my house to accommodate my needs, but I am still miserable because of this limitation. Luckily my kids are grown, but I am a woman alone and I need to find a way to take care of myself. I often feel it’s not worth it.

May 12, 2011 at 6:07 pm
(18) Mindy says:

I am sensitive to both cold and heat. But the heat seems to be worse because I find it is easier to warm up than to cool off. The Heat gives me really bad headaches and makes me feel sick to my stomach. The high and low pressures coming in are a problem for me too. Especially if they are large systems approaching. I will be laid up in bed from days before storm hits to a couple of days while storm is moving out.

My body flips from cold to hot all the time too. Even in winter I will need to open a window when it will be 30 and below. Then I wake up all cold and will need to turn the heater way up. It is weird.

May 27, 2011 at 8:53 pm
(19) Spookiesmom says:

I finally got the dx of fibro from my pain doc. Who sent me to this site. Finally, a lot of things make sense. So my feet can feel like block ice. My skin is cool to touch, but they feel like I’ve run barefoot in snow. They hurt from the coldness. In winter I use a heating pad. And I sweat, more than I ever did. And just for more funzies, I’m diabetic, when I start to crash, the first symptom is sweating. Lucky me! I’m dreading hurricane season, just the rainy season makes me want to live in Phoenix.

Great site, thanks

July 20, 2011 at 2:36 pm
(20) Kathleen says:

I was so glad to read this. My body has been swelling up and I’ve had pins and needles pain shooting through my body worse than normal. I couldn’t put my shoes on the other day and I couldn’t take my rings, which are normally very loose, off my finger. The swelling was what had me concerned so I’ve increased my water intake. Glad to hear it’s just another symptom of yet another trigger, extreme heat!

July 28, 2011 at 3:57 pm
(21) Linda says:

The heat of this summer is really taking its toll. What I find strange is I don’t seem to be able to deal with heat and humidity weather wise, but I wrap my body with heat wraps to loosen the muscles and stop the pain and that makes me feel better.

August 26, 2011 at 4:44 pm
(22) Shelley says:

I was just diagnosed with Fibromyalgia after a horrible flareup of pain. Seems that I have had this for many years and just not diagnosed. I work in a prison and must walk 1-3 miles a day in the weather. We believe the trigger was the excessive heat wave. I had pain last year but brushed it off. Cold does not affect me, but heat and humidity do. I also have problems with excessive sweating, lower than normal body temperature, and in the winter if I layer too much you can literally see the steam pouring out of my clothing. The diagnosis is somewhat of a relief because it explains all the other ailments I’ve been dealing with for 17+ years.

November 22, 2011 at 3:45 pm
(23) Kevin b says:

I don’t know what I may have but when I walk to work (40 mins walk) I sweat from my forehead and drips it is very upsetting I get out of the shower and my forehead is sweating yet again it always seems to sweat at the most awkward times I sweat ehen it’s snowing outside and people just think I must be really fat and unhealthy :(

April 23, 2012 at 4:00 am
(24) Daphne Wallace says:

Oh, my gosh- today, I noticed that half my face was red, the other white- this is bad, meaning that I have an autonomic problem! It was 80 degress, but I was in my husbands hot garage, then five minutes in a storage container, then pulled a couple of weeds, walking out to the back of my house. I got very ill like aI was going to throw up when I got into my car, which I had rollled down the windows, starting the car with fan on before-hand even. The AC saved me! I had a black T-shirt and thick baggy jeans on before that- NOT GOOD! I needed to have a thin cotton shirt and shorts, and a wide-brimmed hat on, which I thought about and skipped on. forgetting a baseball hat, too. Planning is important, and plenty of fluids- NO Coffee on hot days, I would say. At night, keep your hands and shoulders warm- especially if it is winter, or it is going to rain, because the barometric pressure change makes my hands and feet Very achy, and they keep locking up.

April 23, 2012 at 4:24 am
(25) Daphne Wallace says:

I just now realized, that if I put a pillow between my legs on a winter night, after being chilled slightly while on the computer that my legs start to cramp up, and jerk! My ankles continually have to be snapped out of contorting pain! The coldness of the pillow sucks all of the warmth OUT of my legs! I have to also wear high warm socks.
BUT- after reading some comments like this, maybe we need to see if there is a problem also with a bad back- like a pinched nerve that makes our feet cold, as well. Not as much circulation to the legs. I do have a terrible back, with numb feet, from that.

May 21, 2012 at 5:16 am
(26) MysticalG says:

Heat makes me crabby, especially direct sunlight. Living in Hawaii, this is difficult and my kids never understand why I hate going to the beach. If I had to work in the sun, I would be the biggest B… in the world simply because of how miserable it would literally make me feel, completely painful! I’m so thankful that I’ve now run into a group of people who can relate to that somewhat. All this time I just thought I was cranky!

June 4, 2012 at 9:00 am
(27) Kimberly Raiser says:

I went searching on the internet for overheating. I can’t even carry a few boxes around outside. I can’t cut the grass, even in gorgeous weather. I overheat to the point of heat exhaustion. My face turns red like i have a bad sunburn, then I end up with a migraine. I didn’t think it was my fibro, it only started in the last two and a half years. It’s been awful….Sweating…oh yeah…big time

Most doctors don’t even know what to do with us, or the typical fibro symptoms.

June 7, 2012 at 3:56 am
(28) Amanda says:

I have Cold Urticaria also and cannot stand the winter months. They are torture for me. Itching, hives, aches pains the lot.

I love the heat because of this, however when I get too hot I start feeling really tired and nauseous, and often get headaches. It is hard to cool down as if I get too cool, I break out in hives. Air-con is terrible for me but the heat is exhausting and sickening. Anything I do leaves me feeling over-exerted and sick. Only once in a blue moon I may find some energy to do something, but then by the end of the day I have had it.

I either feel sick, exhausted or both after being out shopping and in great pain after standing up (even in the kitchen when I am cooking dinner) for approx. 30 min. I am not happy that you all have to go through it also, but it is good to have someone to relate to.

June 20, 2012 at 11:16 am
(29) Candi says:

I was just recently diagnosed with fibromyalgia and suffer both heat and cold sensitivity! I live in Wisconsin, so i’m doomed! The bitter Winters make me hurt down to the bone and nothing takes the chill away. I’ve been in bed erasing 3 layers, covered in 4 comforters, and still cold! Sometimes I feel like I can’t get my body temperature comfortable and literally have sat with just one arm in a sweater and the other bare. Both in, I feel hot, but both out and I feel cold! With summer hitting now i’m noticing heat sensitivity. Its been 90 degrees and really humid, and even 5 minutes outside makes me nauseous, dizzy, and stats a headache

June 20, 2012 at 11:24 am
(30) Candi says:

I also wanted to mention that I always was a heat freak, my entire life! Up until this fibro kicked in a year ago. I use to be comfortable in Jeans and hoodies in 90 degree heat and never felt sick. People use to think I was crazy lol, and now they think its nuts that my body had changed so much! Heat intolerance is a killer, but the light sensitivity (primarily fluorescent lights) is a far worse symptom that had stripped my life. I can’t work indoors with the lighting, so wanted to career change to horticulture. Clearly I can’t work outdoors now either with this heat sensitivity! What’s next?

July 14, 2012 at 4:03 pm
(31) Ark Rotarl says:

I’ve been trying to seek medical assistance for some 5 or 6 years now regarding my undiagnosed case of FMS and possible, related joint issues. I toss and turn a lot at night due the aches and pains associated with the condition a lot, but within the past two months, I can’t rest much at all and I’m losing sleep because of my temperature sensitivity to heat. Making any physical contact I make when I lay down with my significant other is alarmingly uncomfortable due to the transfer of heat. I feel like I have to have a fan blowing on me at all hours just to sleep! We keep our apartment at 68 degrees at night, but it just doesn’t seem to be enough. It’s bad enough I have some form of hyperhidrosis, so by midnight, I look like I just got out of the shower for how drenched I am in sweat.

September 1, 2012 at 7:25 pm
(32) Kazto says:

I have fibro and hyper excitation of the central nervous system. I can’t stand the heat as I get horrendous myofacial neuralgia and migraines. The cold makes my muscles spasm constantly and any changes in the weather make me feel like I am getting the flu :-( living in Britain at the moment is awful because the weather is more unpredictable than ever this year, I now have a lovely red, peeling nose from the constant flu symptoms and can barely walk or sleep for the pain :-/

November 23, 2012 at 8:50 pm
(33) Tracy Doyle says:

I have extreme sensitivity to cold, all my muscles tense up and I shiver uncontroablly, especially in the grocery store in the summer when the air conditioning is on, I also tried to do aquafit classes, but the water is too cold and my muscles tense up :(

February 8, 2013 at 11:46 am
(34) jayne57cat says:

Damn this hot/cold sensitivity!
At one time I cuddled up to my soon to be hubby in bed…. not these days, he feels like a radiator that I have to stay away from :_(((
My body is like some weird temperature jigsaw. Feet cold but feel ok to me, knee to ankle mottled and often cold but when hot ouch! Thighs and tummy often feel warm to me but to touch is usually cold. It is when this core feels like a fridge, and suddenly, the only way to get warm is to get in a bath. You can guess the next… great until I get out, then I cant get dry cos of sweating. Its as though someone throws a switch and zap its full burning uncontrolable fire.
Im going to try some of the med suggestions and hope.

June 13, 2013 at 11:17 am
(35) Geena says:

I am 16 and I was recently diagnosed with fibro, now that I know the pieces have started to come together. I did competitive marching band in the summer in 100+ weather while doing highly intensive excersice. THere were many days that I had to leave from a bad migraine. I also get rashes in cold weather. Please give me advice to control my fibro!

July 10, 2013 at 4:57 pm
(36) Marran says:

Hi adrennia
Thank you so much for telling me about this excessive sweating I have ME/ Fibromaligy but I never realised that this was a symptom,I could cry for at least I know now I’m not alone.I have suffered with this sweating for years. I feel so unhygienic and I get so embarrassed when I’m talking to someone and thie sweat is rolling down my face I feel as if I have a fountain on top off my head with this happens with the slightest excursion and also if I’m nervous talking to anyone I’m not familiar with
One thing I do find helps is a product called bactroban it a spay and you spray it all over your body but apply it to your face with a cotton pad avoiding your eyes it is supposed to reverse the sweat glands making the sweat go out off your kidneys instead.Ive tried it and my face and body does feel drier i apply it every night. One negative point about the people who sends it out they take weeks for an order to come even when you pay 5delivery charge.Another tip I’m trying at the moment is a frozen hot water bottle. You pour in cold water and then let it freeze for 24hours also have an alternitive one and this gives you a lovely cool pillow that you can keep turning through the night I did feel like going on dragons den with this idea but then thought na il not bother I really would sweat then ha ha hope this helps some one out there as we really are one big family x

December 7, 2013 at 8:33 am
(37) Jack says:

To Geena,
Try avoiding processed foods, meat, cheese, eggs, processed food like canned food, processed flour (bread & Pasta Noodles). Go organic when possible.
The chemicals they use in the food industry are dangerous for consumption. For one example, ranchers use a lot of anti-biotics. They like it especially because they know it cause excess weight on cows. More money at market!
It gets passed on to us when we eat it. Hence excess weight of America.
There has been a recent study that shows that the chemicals used in foods finds a new home in and around our joints, tendons, ligaments.
I suspect that is the actual cause of Fibro.
You are young enough to change your eating habits. It was very hard for me when I became a vegan at 62.
To everyone else: Thanks for helping to describe what I am feeling now for some 30 years.

March 31, 2014 at 5:33 pm
(38) RROO says:

I use to work with fibromyalgia and causes. There are many: My philosophy is to start with simple remedies and if those don’t work then go to the next level, so on, and so forth. Your body has to have water, gas, and oil in order to flush cells and to get things moving along. What would prevent your blood and fluids from moving one place to another? Not enough water, inflammation, thick blood, thick fluids, The Chinese say life is in the blood. There not kidding. Think about what is happening on a cellular level.What is happening on a social level?Stress, what is happening in the environment? Pest control, perfume hairspray, car fumes, cigerettes, etc.. Now add stress back. Now you have tight muscles that have trapped toxins added to the foods that you cant digest or absorb. What doesn’t get digested or absorbed gets stuck in soft tissues. Inorganic calcium. Synthetic anything doesn’t get absorbed. That no fat cheese is one ion away from plastic. Think about what is going in your body along with environmental toxins that the liver has to detox but cant because its over loaded. Combine all that with stress filled tense body muscles. You have to be your own private investigator when it comes to fibromyalgia. Low serotonin can cause a lot of pain also. Did you go on a carbohydrate diet? what are meds or over counter products that lower serotonin ? And yes, I bet there is a virus,parasite or bacteria that is involved with fibromyalgia .When we find rotten garbage there usually is all of the above and probably more.So why go on this long exhaustive search and test to find what it is? Just cover all your bases… all of them, but not with meds…they are synthetic.

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