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Adrienne Dellwo

Dehydration & Heatstroke With Fibromyalgia & Chronic Fatigue Syndrome

By August 16, 2013

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Blog Classic: July 19, 2010

Are you staying cool and hydrated during this hot weather? Those of us with fibromyalgia and chronic fatigue syndrome should take extra precautions to avoid dehydration and heat exhaustion/heat stroke.

Most of us have some form of temperature sensitivity, which can mean that we get overheated easily and our bodies just won't cool down like they should. That's believed to be because of autonomic nervous system dysfunction, or dysautonomia. The autonomic nervous system controls homeostasis -- things like temperature regulation, heart rate, blood pressure, and physical responses to stress. Sure seems to fit, doesn't it?

It's important to know the symptoms of dehydration or heat stroke so you can keep it from getting too bad. Some of them may be hard to distinguish from your regular symptoms. They include:

  • Dizziness
  • Headache
  • Weakness
  • Dark, possibly strong-smelling urine or inability to urinate
  • Dry nose & mouth
  • Nausea & vomiting

Water is great for preventing dehydration, but once you are dehydrated you need something that includes electrolytes, such as:

  • Sports drinks
  • Broth or soup
  • Fruit juices
  • Fruits & vegetables

Staying hydrated can help you avoid heat exhaustion, which can lead to heat stroke. About.com First Aid Guide Rod Brouhard has articles that include symptoms and treatment of both problems:

Also see: Weathering the Heat with Fibromyalgia & Chronic Fatigue Syndrome.

Have you had problems with dehydration, heat exhaustion or heat stroke? Do you take preventative steps? Has it been harder to prevent these things since you've been sick? Leave your comments below!

Learn more or join the conversation!


Photo Darryl Leniuk/Getty Images

July 22, 2010 at 8:00 pm
(1) Kristina says:

HI Adrienne.

I follow you on twitter I am Kissi_krissy. Thanks for all the great info.
I got heat stroke twice in the last 2 weeks at work.
The first sunday I guess I didnt drink or eat enough and had a coffee. First aid brought me to their office. The first aid office was useless as they just had me lay on bed in air conditioning and I had to ask for water which they gave me a little dixie cup. (I think the problem with our disease is that we can look so healthy sometimes and we are just brushed off.)
I laid on the bed then had to go to the bathroom and on the way back started passing out again. Still no water I had to ask for more. I drove home dizzy and scared.

The second weekend I brought sandwich and drank 4, 20 oz bottles of water, drank no coffee when i felt it starting again within 3 hrs of working in a non air-conditioned racetrack.
I snuck into the bathroom to hide and was confused bc I drank sooo much water not sure if i had eaten any of my sandwich yet though.
WHen I felt strong enough went back to my window and pulled the cooler out of my lunch bag and put it in my shirt then grabbed ice and put it into my other waterbottle and rested it on my shoulder and in the back of my shirt (i tucked my pants in to keep it in place and leaned back on it when I could in the chair) and did that the rest of the day.
The first week it happened I could barely get outta bed I was so exhausted. When I got back to work I couldnt even remember how to do my job. Similar to when I got a concusion from a car accident. Weird. Like many of us I have no health insurance so no docs for me.

July 23, 2010 at 4:02 pm
(2) Mummylady says:

I have autonomic nervous system disorder and fibromyalgia. I get overheated VERY easily and then I get dizzy and nauseated. My gp told me that’s because the blood is flowing to my extremities and the vessels are widening in an effort to expose the most blood in an effort to cool off and so not enough blood is going to my brain, etc. Because of the autonomic nervous system disorder, my blood pressure doesn’t equalize if I bend over, stand up or turn too fast–if the blood equilibrium isn’t right, I get sick.
Best remedy is to jump in a slightly cool shower and gradually decrease the temperature to as cold as you can stand it. That shrinks the blood vessels and restores blood equilibrium. If you can’t do that, wet a towel or something in cool water, wipe the insides of your wrist and elbows, the sides of your ankles, and behind your knees. Wipe your neck, forehead, temples, etc. as well.This is where the blood vessels are closest to the surface and will benefit the most from the cooling water. KEEP hydrated. I set the reminder on my Outlook to remind me to drink every half hour.

July 23, 2010 at 11:41 pm
(3) sandylioness says:

Living in Arizona for many years and dealing with high temperatures, this is something I’m very familiar with. Drinking water, cool showers isn’t enough. You have to think about electrolytes. Sport drinks are fine in a pinch if you can have sugar, but when you can’t, it gets trickier. Look for drinks or liquid vitamin supplements that boost magnesium, potassium, calcium, zinc, B vitamins etc and have them on hand for emergencies. I use a powdered mix that I can mix in a water bottle and keep in the fridge for when I need it.

July 24, 2010 at 9:02 pm
(4) weeroo says:

I use a bottled water called Smart Water. Available in the grocery with the bottled waters. It has electrolytes but no sugar. Really helps me function better if I need to be in the heat, I work and function twice as hard/long. I found a lot of the sports drinks has so much sugar and other junk, and this just tastes like clean fresh water. Great stuff!

July 27, 2010 at 1:23 pm
(5) shoshana says:

Thanks everyone for your comments. our summers are way into the 30′s centigrade and I have the symptoms but did not realise that it is heat exhaustion. DUH!!! I dont know if anyone else has this problem, but I have gone off my food and am eating very little unless it is cold – I usually cannot eat anything cold – but only fruit and juices – have to watch the sugar – and mostly filtered water. I was very bad yesterday and my daughter in law immediately gave me lots of water to drink, but i only felt better after a good nights sleep. Thanks Adrienne once again you hav hit the spot with another of my MANY symptoms.

August 1, 2010 at 1:01 pm
(6) Keith M. says:

I initially had what I believe to be a heat episode 6 years ago while playing bball in 95 degree heat. Ever since, I have dealt with autonomic issues ranging from exercise intolerance to headaches to dizziness. Previous to the time of the heat stroke, I had spent a lot of time refinishing furniture. Initially, I thought this was the root cause. However now, I believe the heat stroke may have been the roots to my autonomic mess. Has anybody else experienced this? Another question, any idea on how to encourage repair of your system?

October 25, 2010 at 2:01 am
(7) Mark says:

I have Chronic Fatigue Syndrome, I get good days and bad. I have had it for 11 months now and I am 22 years old. Before I came down with cfs I was very fit now I can’t even go for a 5 minute walk without getting fatigued.

I was out in the sun today because summer has just arrived in New Zealand and I was in the sun for a couple of hours. I have been in bed most of the day because I got heat stroke, I didn’t know sitting in the sun can cause me to end up in bed. I am still learning about the illness that I have.

June 12, 2011 at 3:38 am
(8) Kaitey says:

I live in Southern Arizona, and had a nasty case of heat exhaustion back when my fibro was first really starting to increase in severity. I had a job that required driving short distances between locations in a hot car–it was seldom a long enough trip for the AC to cool down–and pretty soon I was vomiting in a parking lot. I failed to understand, at the time, that you don’t just go back to normal after you hydrate and cool down–I was incredibly sick for four days.

Always carrying water–in the summer a very, very cold drink–and avoiding exposure to temps over 90 for more than a few minutes are key for me. Fibro makes me sweat profusely so I dehydrate very quickly. Even a night of sleep without water and I’ll wake up dehydrated–it’s crucial to keep water by the bed. Staying hydrated and cool is a big challenge with fibro, and takes constant mindfulness.

The medications I take my my skin sun sensitive so I never venture out without sunscreen–I keep it in my purse and in the car so it will always be there when I need it.

July 7, 2013 at 9:08 pm
(9) kirstie says:

Since being diagnosed with fm & cfs had heatstroke a few times never thought about them being related

August 16, 2013 at 6:43 pm
(10) Charlayne says:

I’ve had 4 heat strokes over the last 30+ years, my doc also thinks I’ve had fibro that long. I’ve had to quit going out in the heat of the day and we have horrible air conditioning bills every summer because I have no control on my temperature anymore. Mine is combined with Hashimoto’s Thyroid, that is, in effect, a dead thyroid. I take meds for it but the med doesn’t handle the problem of over heating. I always have water with me when I do go out. It’s truly scary when you can’t think, can’t talk straight, and all you can think is “I’ve got to get small so the sun can’t find me” (which is what I said during two of the episodes). I’ve had to have IVs, wet sheets, and ice packs to get my temperature down.

If you have trouble with heat, please take care and don’t push it. The heat stroke can catch you so very quickly, you may not notice until it is too late.

August 16, 2013 at 8:52 pm
(11) Cathy J says:

My first case of over heating occurred when I was in the second grade, I was the only child in the whole school was over heated that day. Since then, I have been over heated more times than I can count, having grown up on a farm and working in the fields. I am always left with a massive migraine. Sometimes I pass out. I also sweat terribly, and one of the ways I deal with the heat it to wear long pants, long sleeve shirt, cotton scarf around my head and neck and a large hat. The clothes becomes soaked with sweat or I throw water on my clothes so it helps keep my skin cool, and keeping an ice pack on my head under my hat helps. My skin is sun sensitive, so covering up is my protection. I might look odd, but on the farm, no one sees me!

August 16, 2013 at 9:56 pm
(12) Gloria says:

I have never had heatstroke, but am very sensitive to the combination of heat and humidity. It makes me feel very lethargic and uncomfortable. Luckily I am retired and can sit under a ceiling fan for a good part of the really hot days.
Since I had some adrenal/ thyroid issues, I didn’t used to sweat, now I am in a somewhat better place and started to sweat again. However, my electrolytes have never really come back up to a good level and I am often dehydrated because of that. I always add extra salt to my food and even more when it is hot. I am also taking a potassium supplement (as well as cal/mag and many others). I have also used extra salt with my drinks in the past. I think that I will add some salt to my coconut water/ cranberry juice mixture when it is this hot.

August 17, 2013 at 4:12 pm
(13) Dave says:

After a case of severe dehydration caused a trip to the hospital I realized the importance of keeping the fluids up. I’ve been drinking a concoction of about two thirds water a third coconut water and a shot of lime and salt. I try to keep it going all day. The ingredients of coconut water are similar to pedialyte .This is of course no cure. Remember that most of the antidepressant meds come with a heat warning and myself I notice significant increase in sweat. I’ve realized over the years that people with CFS are sort of a “canary in a coal mine” seems like the general good health advice to well people applies triple to us.

August 21, 2013 at 8:48 am
(14) Susie says:

Thanks for all your posts. They are wonderfully informative. It’s such a relief to read that there are other people experiencing the same crazy symptoms as me. My friends are clueless about what I experience, so it’s comforting to know that there are others in the world who understand.

August 25, 2013 at 9:25 pm
(15) Catsam says:

I have not been diagnosed with anything . I will randomly, for no apparent reason start to sweat so badly that it looks as though I stepped out of shower with my clothes on. I take meds for hypothyroidism, high blood pressure,high cholesterol. Been taking med a long time, just started sweating in past year. Any guesses what’s wrong with me?

September 6, 2013 at 4:03 am
(16) http://wynajemkrzesel.mywapblog.com says:

Good post however , I was wondering if you could write
a litte more on this subject? I’d be very
thankful if you could elaborate a little bit further.
Thank you!

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