Heat waves are awful for many of us with fibromyalgia or chronic fatigue syndrome, because our body's homeostasis (regulation system) generally doesn't work well. We heat up too much, and we can't cool down.
I've written frequently about our need to cool our bodies, but I recently learned that I'd overlooked one aspect of it - when you're really hot, being too aggressive about cooling off can cause its own set of problems!
In a region that rarely sees 100 degrees, we recently had several days in a row of 100+ temperatures. I got badly overheated at a wedding reception where the air conditioning had decided not to function. When I got home, it was straight to the bathtub, where I ran some cold water to soak my feet in. I was distracted, so I didn't test the water. I just ran a couple inches of straight cold and then plunged my feet in.
The shock of that extreme cold on my hot, puffy, achy feet was agonizing! They jerked back so fast that I nearly fell off the side of the tub. My whole body tensed up and went into full fight-or-flight adrenaline mode.
Most of us know the consequences of that: dizziness, disorientation, pain spikes, hammering heart, panic, nausea and other symptoms are all possible. They're usually followed by a crash, with some combination of fatigue, brain fog and pain hitting hard.
What I realized is that I usually take things much more slowly and carefully, but I'd never really thought about it. I know now that I need to pay attention and not deliver this kind of shock to my system.
For ways to keep yourself cool or cool off when you need it, see:
What does the heat do to you? How do you keep cool? Leave your comments below!
NEWSLETTER | FORUM | BIO | TWITTER | FACEBOOK
- Temperature Sensitivity in FMS & ME/CFS
- Excessive Sweating in FMS & ME/CFS
- What to Keep in Your Purse
Photo © Darryl Leniuk/Getty Images
My favourite new weapon is a tilly cobber – cools the jugular vein down which really helps. Its just some water retaining granules in a cotton scarf, but fantastic to wear on hot days.
Sorry for your shock and pain. I am having a terrible day for myself, today. Hurting all over and taking my meds. Went to a class, no one else turned up, I guess it got canceled and I didn’t get the call.
Just hate it when I do all I can to be well and still have days like this, just stretched out in my bed suffering. This disease should go to hell, it’s of no use here.
Sorry, just a hard day with high humidity and a weak body. Tomorrow I have my busiest day and I if I feel like this, won’t be able to function at all. Disappointing a lot of people, myself mostly.
I have a really hard time with heat or cold,if I sweat at all I break out in hives & my doctor told me I was allergic to my own sweat years before I was diagnosed with fibro. so I can’t go outside & sweat at all in the summer nor can I over dress nor can I shovel snow in the winter (can’t anyway now due to bulging disks in spine) but I have suffered with this for years & I find to cool myself down I use a ice pack wrapped in think cloth hold it to my wrist veins (it just helps me) or the back of my neck or I use a cold wet wash cloth same manner (sometimes I must go outside) and I sweat
also I want to thank you for these informative stories you & others tell of your illnesses for I thought for years I was the only person alive felt or had problems (aches,pains,heat or cold problems,dizzy,fog,ect) not that I wished any of these things on any of you just that Im happy Im not imagining my problems 
We are having drought with the heat here and every evening, I have to go out and water my garden. Here is a good tip: Every few minutes, spray your hands and feet with the hose to cool off while you’re working. Set it for “mist” if you can, that feels the best and won’t shock you. I have Raynauds and was concerned this wouldn’t work for me but it has- no pain and it helps keep me from over-heating.
Adrienne, sorry for your bathtub shock and thanks for the warning!!
I have been insufferably living with fibromyalgia now for about 3 years, plus diabetes and hypothyroidism. “Giggles” It still never amazes me when my family and friends ask me ” Why are you so tired, hot and cranky?” A little dysfunctional humor there
I lived in Texas most of my life and recently moved to Tennessee about a yr ago. I think I may have accidentally pulled a heat wave with me as temperatures have soared well over a hundred this year. I discovered and awesome little device recently at Dollar Tree, battery operated hand held fan! One stays in my purse, one in my non air conditioned vehicle console. They are literally a life or two saver, since I am still kickin and so are the people around me. I also have a mist spray bottle fan in the back for extreme situations from a sporting good store. Slap on a baby wipe to the back of the neck and turn on the hand held!
several showers, lots of water and fruit, light clothing. when outside I wear a large brim hat, carry Vitamin water and wear sunscreen.
Adrienne, I hope you don’t mind me going off-topic here but the following, from the above article, really hit home, “My whole body tensed up and went into full fight-or-flight adrenaline mode.Most of us know the consequences of that: dizziness, disorientation, pain spikes, hammering heart, panic, nausea and other symptoms are all possible. They’re usually followed by a crash, with some combination of fatigue, brain fog and pain hitting hard.”
I seem to experience these types of things in varying degrees every time I am in a stressful situation or caught off-guard by a situation. Although most would say it was normal, the problem for me is it happens in EVERY time of stress or unexpectedness. A worry about not getting my work done, the unexpected arrival of company, an unexpected noise … what is little to others triggers an unexpected, unwanted and totally undesirable ‘adrenalin rush’ and/or symptoms that feel like I have been suddenly hit by a virus of some sort. When it is happening I try my best to recognize it, acknowledge it, and try to diffuse it (ie: breathing, self-talk, distraction, even at times admonishing myself “oh for pete’s sake, suck it up princess”) but, no matter how aware I am that this tends to happen, I can’t stop it from happening.
Am I alone in this? Do you (or anyone else) have any information about this part of Fibromyalgia … or is it a personal ‘quirk’ that has nothing to do with Fibro at all? FYI – I was diagnosed with FM about 10 years ago, have a good doctor and have had a host of treatment options/treatments and information. However, I never really thought about this particular reaction to things until I read the above article. Now I am curious as to whether there is a connection or it is just ‘all in my head’. Feedback from anyone, on either side of the fence, would be greatly appreciated!
Hi all, The flight or fight response is with a lot of fibro sufferers. My daughter attends a Bowen Therapist who has taught her ways to alleviate /handle the situation using tapping technique on certain body points, which has been very effective for her. She feels her Bowen Therapist has been the most helpful treatment for her Fibro. Just thought you might be interested. Patsy (The Mum)
Something I recently discovered that really helps is menthol spray (Perform and Icy Hot both make this….the Icy Hot version is not the same stuff as their other topical formulas)…..it comes out very wet, but dries fairly quickly and lasts a long time….feels like wearing ice, esp if you add wet hair and/or a fan …..one thing to remember, though, is not to leave the actual can in a hot car or direct sunlight or any other really hot location (it’s pressurized and not supposed to be exposed to extreme heat)
another thing that helps is this:
http://www.polar-products.com/index.php?p=view_product&product_id=3
I have tried other cooling products, including other things from this company and they didn’t help me much at all, but even though this doesn’t feel like it is all that cool to the touch, it really does help cool me down…..it’s a waist band that is filled with crystals that turn into a gel when soaked in water……they draw the heat away from the body
Hi all!
I have been diagnoised with fibermyalgia, and hypothryroidism for 17 years now , 6 years ago I was diagnoised with neurocardiogenic syncope and 5 years ago with diabetes…and along the way I have been diagnoised with several other ailments. I too suffer from hot and cold…either one will set my fibromyalgia off…the way I keep cool is by getting a wet rag cold with water, put it on my forehead, put a soft cold compress on the back of my neck and lay in front of a fan…it cools me slowly so as to not shock my body. The only time I have trouble in the winter is if the furnace is set above 72 and I can no longer wear long sleeves. (I live in California. To another name, I too suffer from this fight or flight when stressed. I tend to end up taking to my bed, because I expend so much energy that I fatigue quickly. I tried cognitive behavior therapy but that did not work well for me, and I have tried meditation, which has helped some, but what has worked most for me is when I pray. Each person has their own belief and rightfully so, but I mention it because it is what works for me. Hang in there…some days will be better and some will not…I have come to accept that. It makes living much nicer.
Hello all,
I have been diagnoised with fibermyalgia, and hypothryroidism for 17 years now , 6 years ago I was diagnoised with neurocardiogenic syncope and 5 years ago with diabetes…and along the way I have been diagnoised with several other ailments. I too suffer from both hot and cold. Although I am rarely cold. When too hot, I get a soft gel cold compress; wrapped in a towel, and put it on the back of my neck while laying down in front of a fan. I also take a wash cloth and get it wet with cold water for my forehead. This prevents me from getting the shock of too cold to the body. To another name, I do the same when I am stressed. I usually go to bed quickly because I expend so much energy that I quickly fatigue. I have tried cognitive behaivor therapy, but that did not work for me. I also have tried meditation concentrating on my breathing, but it doesn;t alway work. What I have found to be the best for me is to pray. Not everyone believes the same so take it as it is. I have learned to accept what the illnesses are and what my limitations are…that has made life much more enjoyable.
Thank you Adrienne!! My family says “It’s not hot,” even when it IS hot! hah! But I’m waaay hotter than they are and now I know why. It’s that aloydynia (sp). I wear my up in a French twist all summer, and it helps A LOT. Cool blouses with no neck. Lukewarm showers. Anyhow, THANK YOU FOR THIS ARTICLE! (This is my first time posting here.
)
Hi, I have always been a hot person but since fibro I have cooled down considerably which seems backwards to the normal woman (I am in my mid 40′s when I am suppose to be starting hot flashes)
Anyway, now I struggle with hot and cold (I live in Wisconsin and we get both extremes pretty much every year). But I find I get colder much easier which is a welcome change but still never know from minute to minute if I will be cold or hot. I have tried to learn to bring layers of clothes with me wherever I got. Thanks for the flight/fight conversation as well – it is helpful for me to know because in my own little world amongest the living I go through this and wasn’t sure what was happening. Thanks for sharing everyone – I am right now at the point of overwhelmed with this life with fibro. But that with pass and I will go on living (or not really living sometimes) with the disease from hell. 
I have FM, CFS, and hypothyroidism. I have done much better all around since my thyroid treatment started.
Last Fall, I started working at a dry-cleaners, of all places. I would not have been able to work at all 2 years ago, but I’m weathering it pretty well.
I is HOT in here, and humid too. Nearly every day over 90, not accounting for humidity.
I drink a LOT of water 2-3q and include a lot of unrefined salt. I think this has kept me going. The sea salt helps replace electrolytes. I have had no dizziness or headaches, although I can get pretty cranky at night.
We do have AC at home but don’t keep it down too low. I think the contrast would be worse than anything.
I REALLY CAN’T STAND 2 B IN AIR CONDITIONER 4 LONG PERIODS SO I USE FANS AND OPEN WINDOWS 4 CROSS BREEZE BUT I HAVE FOUND THAT AROUND 3 – 4 PM WHEN IT GETS REALLY HOT I TAKE A SEMI COOL SHOWER ONCE MY HAIR IS WET I TEND 2 STAY COOLED OFF
I was diagnosed with fibromyalgia/cfs almost a year ago and I find that I quickly get headaches, nausea and my other symptoms become more intense when it’s hot out, especially when the humidity is up as well.
I was forced to quit my job in late summer of last year (I was a machine operator) because I worked in building without A/C and the heat/humidity resulted in breathing difficulty so severe that my doctor thought I might be having a heart attack.
I have so much I want to say about sweating, but in a brain fog and don’t know if I will make any sense of it all. First thing is that I am really sorry Adrienne about your mishap with the cold water. Just like you, I cannot handle moving fast. Monday I cleaned the kitchen and bathroom floors, but before starting I got one of my hubby’s hankies, wrapped ice cubes in it and then put it around my neck. Helped some, but still was dripping sweat. Sat down in front of the fan to cool off. Then in the afternoon I went to the workshop with hubby to get into some totes with keepsakes in them. Did not even get a tote out, IMMEDIATE sweat, nausea, dizziness etc. This is Saturday and I am still stuffering, pushed myself right into a HUGE flare. Since 2006 I had been telling my doctor about these excessive sweats and she would change this med or take me off one; in November of 2010 she said to me in a snippy reply, “well my other fibro patients don’t sweat”. Wow, she deflated me with that comment. I stayed with her, but I started educating her. Every visit she would get printed info on sweating/fibro. Last November she got a copy of the criteria (printed in Journal of Internal Medicine) for FM/ME/CFS. Every since then, she has listened to ME and has lots more time for ME, our relationship has completely changed.
KIM………My daughter has Lupus and Fibro, she is always cold, so you are not alone. The only time I am cold is after a HUGE sweating smell.
ADRIENNE……..I love all of your articles.
I have been using this method to cool down for years. When I am overly heated, I run a cold tap water and put the inside of both wrists, one at a time under the running flow. I can’t explain the thought behind this, nor any scientific jargon that explains why this cools me down, but cools me down very slowly. All I know is that it works.
I’ve been lucky enough to have air conditioning for the last few years, but I learned a nifty trick on a trip to India that I’d used before that. Not much to it, really — just wrap yourself in a wet sheet. You can get head-to-toe coverage if you need it, or just wrap your legs or your upper torso, whatever. Works like a charm.
Second to that is showering with your clothes on. You don’t have to soak them, you can just get them a little wet. Or, you can just wet the front and not the back. Works on the same principle, but you don’t have to mess with a sheet.
Remember to stay hydrated! There are hydration formula recipes online that use table salt, honey, etc. I find these are much more helpful that the oversweetened soda they’re calling hydration drinks these days (the exception might be unsweetened pedialyte, but the homemade recipe is a lot cheaper!)
I’ve been lucky enough to have air conditioning for the last few years, but I learned a nifty trick on a trip to India that I’d used before that. Not much to it, really — just wrap yourself in a wet sheet. You can get head-to-toe coverage if you need it, or just wrap your legs or your upper torso, whatever. Works like a charm.
Second to that is showering with your clothes on. You don’t have to soak them, you can just get them a little wet. Or, you can just wet the front and not the back. Works on the same principle, but you don’t have to mess with a sheet.
Remember to stay hydrated! There are hydration formula recipes online that use table salt, honey, etc. I find these are much more helpful than the oversweetened soda they’re calling hydration drinks these days (the exception might be unsweetened pedialyte, but the homemade recipe is a lot cheaper!)
Hi, I have the fight or flight symptoms often when people yell,too much noise,when I first start work I shake and feel awful for about 45 minutes until I can settle down. Thesymptoms start on my way to work and at work I try my best tohide them. I have had fibro for 32 years and the chronic fatigue began about 10 years into fibro. I have severe problems with heat and with cold when extreme and use some of the methods talked about. In The winter I always keep 2 blankets in my car in case of a breakdown. In the summer I rarely go outside in the afternoon and my son installed air conditioning for me. Adrienne I had a similar experience after getting too cold and stepped into a hot bathtub. It was horrible. Good luck everyone!
Like al of you, I am very sensitive to heat, always have been. But the sweating is somethingI never did – until FM. Also, some of the meds I’m on (for bi-polar disorder, hypothyroidism and fibro), require me to limit the amount of time I can spend in the sun. The best and least complicated method I use is to always keep a few gelpaks in the fridge and use them, wrapped in a pillowcase, on the wrists, between my breasts, on the inner thighs, and my feet. I move the paks around so that one site doesn’t get overcold. Of course, throwing off all clothes, if possible, is a must, as is sitting about 5 feet from fan. Hang on in there.
I have nothing to add to the above suggestion re: heat.
Re: :fight/fight which sounds like when I become very sensitive to everything. For me it seems to be connected to having done too much so my nervous system is overloaded. I try to stay within my limits of energy output & this seems to work.
what a curse we bare. I have to put a cd from kelly howell
healing meditation from brain sync to help me every morning.
I was put on zoloft that me me so dizzy I couldn’t walk.
I’m also diabetic and have diverticulites. There are days I wish
I would die. When is fibro being treated as a serious disease?
usually I have trouble going to sleep if I feel too warm, so I wet a washcloth and run it all over my body. In the summer I keep a small fan going and after the cool off with the wash cloth; I feel very relaxed with the air running.
I used to cope with hot weather pretty well until I got CFIDS in 1995. It got much worse when I went through menopause six years later. Now I really dread the summer heat and humidity. I live in NYC which also has very poor air quality, and alot of concrete which radiates heat. Sometimes I stay inside in the a/c for three days at a time during heat waves.
A cobber is best used in areas of low humidity, say, the desert. It is not very useful in humid areas. I did alot of research last year on “cooling vests” and “cooling clothing.” I got a variety of clothing from Polar Products which use cold packs which you keep in the freezer when not in use. Actually the only part of it I generally use is the neck cooler. You put cold packs in the cooler, which is a strip of strong nylon fabric, and adjust it to your size around your neck. The cold lasts about an hour when you are outside in the heat.
There are a variety of companies which make similar products.
My husband and myself now argue alot about what feels too hot or too cold inside. I am almost always too warm and he is cold. Haven’t figured that one out yet.
Heya i_m for the primary time here. I came across this board
and I in finding It really helpful & it helped me out much.
I’m hoping to offer something back and help others such as you helped me.
Besides suffering from fibromyalgia, I am in the throes of menopause and the hot flashes are terrible. I bought an “Arctic Chill Towel” which helps cool me down without adverse affects. It is a large micrfibre cloth that is hard when dry, but becomes soft when wet. When shaken it cools to about 20% cooler than the surrounding air. When I am too hot because of working outside or from a “blushing moment”, I simply shake the cloth and apply in turns to me neck and arms. Almost instant, blessed relief! I highly recommend everyone get one, or even just a smaller micrfibre “super-absorbant cloth”.