Symptom Sound-Off: Fibromyalgia, Chronic Fatigue Syndrome & Summer Heat

I hate the heat I was diagnosed with fibromyalgia and costochondritis 2yrs ago although the doctor thinks I have been suffering undiagnosed for at least 6 yrs. The heat makes me really poorly it makes my ankles,legs and hands swell and the pain in my chest caused by the costo is unbearable. I can hardly walk and my moods are unbearable I know a lot of sufferers have it worse in the winter by I pray for the winter to be 12 months of the year because it makes living with these chronic illnesses slightly more bearable. Gentle ((hugs)) to all x

I have fibro and RA, and I have my worst symptoms during hot, humid weather. I feel like I’m living in a different body when it’s cooler. I hope we actually have a winter here in Georgia this year!

I’ve had me/cfs for about 14 years. As time has passed, my symptoms have changed slightly. I still have the ‘old faithfuls’ like unrefreshing sleep, some fatigue and post-exertional malaise. But …

Recently, my symptoms have revolved more around disturbances in my autonomic nervous system. Among these is a lowered ability to regulate my body temperature. I don’t know if my internal temperature actually rises, but I’ll certainly feel all the symptoms of serious heat exhaustion. I also tend to get red in the face and sort of “puff up.” It’s apparent enough that people notice and ask questions, or suggest I get some care (lay down, etc.)

For me, hot, humid summers are much harder to handle than winters. While I certainly feel the cold and the discomfort it brings, warming up seems much easier than cooling down.

The irony? Total strangers, friends and acquaintances are quite sympathetic, but my live-in boyfriend of over four years always makes me feel like I’m malingering. (Apparently he’s the only one allowed to get sick, feel pain, or have a bad day.) As you might suspect, this has been a huge added stressor, and you know how we love to have more stress in our lives!

My solution to my boyfriend’s insensitivity is perhaps a bit more extreme: I’m moving into a new apartment, and I’m getting a new boyfriend. Seriously. I recommend it.

Heat = misery. Plain and simple. This summer has been nasty. I’m tired of being swollen, hot and plain miserable. My brain fog is much worse and I feel like I can’t think, let alone function. My head feels “heavy”.

Thankfully we have AC and I don’t move out of the house unless absolutely necessary. Today we had a drop in temps and my head already feels better. I was even able to go grocery shopping this morning.

I too enjoy winter months. You can dress for it at least!

Lately I blame the heat issue on menopause (not there yet, but I’m 50) but I’ve had heat issues since my early 30′s and it’s awful. I’m usually sweating all the time and feeling miserable. Yesterday it was so hot that by 4pm I couldn’t stand it and lied down to rest and fell asleep till 12 midnight. This morning my husband was upset cause I didn’t eat dinner with him. He’s very healthy and he gets up very early. He tries to understand but it’s hard for him and everyone else. I have a persistent headache and just plain feel lousy. I was diagnosed with fibro 6 years ago but I’ve had symptoms for about 20. Sending good thoughts and gentle hugs to those like me, with a chronic illness like fibro.

Good for you Barb on the boyfriend thing. We have enough problems without having to put up with some insensitive soul making our lives more miserable. I also hate hot weather! I just get so drained and the sweating drives me nuts! I’ll take cool weather any day!!

I DETEST SUMMER! Where I live summer temps are regularly over 100-110. Its miserable. I feel miserable. I so look forward to fall and cooler/colder weather. Im ready to summer im Barrow, Alaska!!!

Summers have always been worse for me but not especially my FM. I have CSF and vestibular problems (complete loss of balance in one side, oscillopsia – a neurological vision problem) and fluctuations in weather cause my balance to be worse which causes CSF to be worse which causes FM to be worse. So, needless to say, I am really restricted in the hot, humid summers we have and essentially housebound except on the occasional “better” day.

Others have mentioned, especially Barb, having problems with regulation of body temps. Even simple tasks like putting a quick meal together leaves me with wringing wet hair, especially around my neck. I went through menopause several years ago and know what those hot flashes feel like…this is not the same. Just minimal movement even in a very cool place causes the red face, wet hair, etc.

I found online a “Polar towel” that helps somewhat as long as you keep it wet with cool water or hold it under a fan for a few minutes then use it around your neck again. That may help some of you who have the same problem.

We are having storms all around today so I am feeling pretty down with the vestibular symptoms (feeling like I’m in a salad spinner), exhausted because a couple days ago I pushed too much and am still experiencing the post-exertional fatigue symptoms. Had to have my mother go to the grocery for me today. She is 81. I should be taking care of her…I’m so tired of being dependent on others, tired of being tired, tired of canceling even doctor’s appointments because I am too exhausted to get dressed to get there, tired of not knowing from one hour to the next how the weather is going to affect all my health issues. I know there are others who are experiencing multiple health issues along with FM and feel the same way I do.

Thanks for letting me vent. I needed it today.

I dread the summers…our house is too big and old to air condition, so we put a window unit in one room where I can go when it’s unbearable, which it has been this summer. Aside from suffering the same symptoms others have mentioned, I get a really nasty rash, starts on my scalp, covers my face, and sometimes moves down my body. It’s tiny, but incredibly painful and itchty. Anyone else suffer from it? My dermatologist can’t identify it, put it down as rosacea, but I only get it in the summer. Bring on the cold weather!!!!!!!!!!!!!!!!!!!!!

On the one hand, I feel like weather doesn’t really affect my fibromyalgia (which I’ve had for thirty years). That is, hot or cold, neither one makes me more well or more ill symptom-wise. Other things do that, and I’ve mostly figured those out over the years (knock on wood). BUT, when I get cold, I really, really have a hard time getting warm again. I can tell that’s a fibro thing (and my rheumatologist agrees). Likewise, when I get too hot, I really, really have a difficult time cooling down at my core. (I live in an area where temps are regularly 100…but 105-110 this week!) The extra heat will actually make my heart rate increase a great deal for about half an hour (which my rheumatologist says is due to the heat causing a release of toxins which the fibro makes the body unable to process well). Same thing happens if my shower’s too hot! Live and learn!

It’s so nice to be able to vent to someone who understands! Summers are killer for me. I tell people I have reverse SAD as they seem to understand that better than trying to explain the heat intolerance issues of my FMS and Hashimoto’s Disease. My pain is increased, my mood deteriorates, I can’t sleep, I can’t think, daily headaches, my productivity at work is shot, etc.
Most people around here cannot wait for the summer (it’s so cloudy and gray in the Pacific Northwest most of the year) and they worship the bright sunny days and hot air — it just baffles them that I could possibly be in pain when they’re happy.

Thanks, that felt good. Everyone here just hang on and know that Autumn is coming!!

Yes, I’ve got the swelling going on. It’s really bad this year for some reason. I’ve had fibro since I was a kid, but wasn’t diagnosed until about 12 yrs ago. (I’m 51). The cold weather makes me ache, but this hot weather is making me soooo tired. I’d hate to see what I’d be like without a/c. I’ve been in a flare-up for two weeks now. I actually felt a little better this morning, but went to the grocery store. Now I’m spent.
I sweat all the time-even sorting out my daughter’s pills for the week makes me sweat. Sometimes even taking a shower makes me sweat!!!Unfortunately, both my daughters have fibro and they are miserable, too. I hate this disease!
I’m grateful that my hubby understands (most of the time). It’s very hard to be around people who don’t know how awful you feel.
Gentle {{hugs}} to everybody.

My fatigue is much worse, as well as, swelling in my face, hands, legs and feet. Of course, the swelling makes the pain in my legs and feet worse as well. I also have trigeminal neuralgia, and the headaches seem to be worse in the summer with the heat and constant showers that pop up just enough to make it even more humid.

I use Wellbutrin which helps with the fatigue and keep rice packs in the freezer that I can wrap around my shoulders or lay on my forehead – that seems to help cool me also.

I am quite fortunate I live in the northwest and our summers aren’t extreme. It is more of a humid air so that is not so great with the excess sweating. I actually prefer late spring early summer time.( I do the best then.) not too hot not too cold. I have found after 6 years of this disease that now, when I am over heated and come someplace with a/c I will not cool down the core but my body makes my hands, fingers, feet, toes and shins freeze!? bone chillling cold! I am perplexed as to how to be comfortable in any environment. Socks and pants on to keep them warm a tank top with a airy sweater( to keep the wind from touching me) and a towel handy to wipe the sweat that is pouring down my body! AAAAAHHHH. I too am sick and tired of being sick and tired! I hate asking for help and relying on others to get done what I need done…it never ends here with our 4 little children and a husband that has no clue, he truly thinks I should just “fight thru it”lol I know others have had to hear that one! gentle hugs and wishes for a median climate..lol

Sorry but i am só glad i read i am not allone!
I never thought it is part of the FM!
When I tell people that I love spring and autumn and not the hot summer days, they looked at me asking them selfs if I am joking…No, I am not! When I was young and healthy I was happy on a hot beach…laying in the sun! And now?
I am sitting in the shade, laying down, doing nothing. very tired, feeling I’ll.
If I had to do something my face get very red, wet.
Sweat is running of my body…
I sit in front of a AC until my skin is cold, but inside I am boiling!
And that inside overheated feeling stay’s.
My hands and feet are swollen…The cooling-system of my inner body can’t handle this anymore! I wish you well from The Netherlands!

Last week we were the hottst city in the nation. We had 110-114 degrees ALL week and have had 100 + ALL summer.
I’m miserable. cannot breathe the super heated air and the heat drains all energy out of me and makes me nauseated……..Come on fall!

I despise summer! Especially this one because it has been unrelenting heat until today! Only 58 degrees and rainy! The rain makes me a bit achy but I will take it any time over heat. Just walking around the store can get me overheated and then I start sweating and my hands get puffy, my face gets red too. I have had fm/cfs for nearly 35 years and it’s gotten worse! Bring on fall!!!

22 C is my peak temp for being mostly comfortable, 24 C is when I start to feel sickly. Swelling of hands feet and face, general malaise, overall miserable and can’t function so well. The warmer it gets the worse I feel. I live in Ontario Canada, thankfully our super hot weather is limited to 60 days but then it gets really really cold for a very long time. I hate wearing the bulky winter gear but even then it’s not always enough to keep me warm. I just don’t transition well from the heated indoors to the super cold out doors. I suppose I’m really only happy in spring and fall.

Contrary to the majority here, I don’t mind summer’s heat – perhaps because where I am it only lasts 2-3 months and the sunshine and ability to be outdoors so much lifts my spirits! What has bothered me this summer is the humidity, a rarity in these parts. I find it oppressive and it saps all the energy I can muster right out of me. I have spent some time in the winter in Phoenix and, despite the high temps (90-100F), I felt great overall – low pain, increased alertness and energy. So I have come to the conclusion that as long as the heat comes with sunshine and not high humidity, my body seems to like it.

I too hate the summer, the heat and humidity keep me trapped in my house. People are so callus, they know how I feel yet they keep asking me to visit to sit outside! I would feel like I was dying with the sweating and chills and the cramps, I feel like I’m whining when I turn down invites so I am pretty isolated in the summer. I love autumn and even winter (to a degree) LOL. However, after so many years I feel I should be used to all this but I am always blindsided. It is so frustrating!!!!

Living in Toronto, this past summer has been horrible, and I find the damp cold winters to be even worse. The cold physically hurts. The heat and humidity is oppressive. My pain is my constant companion and sleep is a distance oasis, I can never reach.

I have been suffering from Fibro since a car accident in 2001 and was diagnosed with Arthritis last year. Together, I can’t get a break. To add insult to injury, I developed Opioid Induced Hyperalgesia, which basically means that opiate based medications have the reverse effect on me and increase my pain level (substantiated when I was quickly weened from those types of medications, overall pain became more localized). This adds to my belief that there is a connection between these auto-immune disorders and chemicals in our environment in addition to a genetic predisposition.

Anyone else want to set up a Fibro community in a country with a tepid climate?

Remember to live in the moment, give yourself permission to do something nice for yourself, keep cool and never give up hope or trying to find what works for you.

Chest pain and a suffocating feeling in the heat-standing up is worse than sitting. Yes, autonomic dysfunction reigns. I’m cold all the time inside buildings, can’t warm up even in summer, yet outside can’t tolerate the heat. When my husband keeps the AC low, I’ve slept with hooded sweatshirt, gloves and multiple blankets even though it’s summer. Ditto the previous poster-Hashimoto’s, fibro, orthostatic hypotension, etc.

Hi Guys,
am i the only one that loves the heat? yes it makes me sweat,which is horrible,and i find it very hard to sleep at night,but being out in the sun,is about the only thing that helps warm my bones right through,i still get my pain and tirderness and other sytoms in summer,but they are so much worse in the winter i get frozen to the bone when its cold and its pure agaony,just being in the sun,makes me feel so much better and a real mood enhancer,guess it all the vitamin D,feel sorry fro all you guys that really suffer in the summer.

Either heat or cold bothers me about equally. When I was first diagnosed I discovered I was affected greatly by the weather and set myself to find what particular weather pattern(s) were bothering me so I could plan my life according to weather perdictions at least but after more than a year of studying my flares and weather patterns I discovered that change, not a specific pattern was the culprit and whether a change would affect me or not was very random but for one blindingly accurate predictor. I live 35 miles from the Gulf of Mexico and once a tropical storm or hurricane gets fully into the Gulf I can almost pinpoint the location without a weather map. The closer it gets the worse I hurt. The up side is that about a week after it passes is almost blissful for me even when it leaves everything around me a wreck and my stress hormones (another predictor for me) are at full blast! On a side note I have always wondered if adrineline may play a part in those cases.

Besides the general misery of our hot weather in the Ozarks, I have had way too many hot flashes lately. I’m just one big sweaty mess! And to make it worse, if I sit in the sun too long I get physically ill!

I will also normally have a flare up in the summer. I’m having a really bad one right now. My only hope is that it will go away when the weather goes into fall.

I to am looking forward to fall and winter! The only way I can stand the heat and humidity is to be somewhere where I can get in the water. Being outside when it’s so hot and humid ( I live in VA) is impossible. I feel like my body starts to swell and feel like I could pass out. I need to be in the AC!!!!! Plus the brain fog kicks in. I sweat when I get out of the shower in the morning even with the AC on. Thank God I have a husband that understands. He has seen my go from being okay in the ac in the morning and going outside. He says my face drains of color and I just look bad. This is when I crank the ac in the car and move the vents so the hit me. I also get rashes from the heat. Does anyone have problems with yeast rashes under their breasts and where your underwear hits the crease on your legs and thighs? I had to get script for this which is 50 dollars a pop. Oh how I can’t wait for fall. Maybe with the way the season seem to come earlier we can all have some relief from this hot summer! I’m hopeful.

the heat just adds to my chronic fatigue. i have problems with dizziness and feeling faint. any extremes bother me so it’s not just the heat but also the cold. i live in albuquerque and we get both. the humidity isn’t so much of a problem here altho we do have a rainy season. i’m also going thru serious problems with losing weight and i’m going in for an upper endoscopy as well as another colonoscopy to hopefully find out what’s wrong with me. i’m scared half to death. it’s always something. i would just love to feel healthy for a week to remind me what it’s like. i’m not the same person i use to be. i don’t feel joy very often even tho i have so much to be grateful for. i know it could all be much worse. i’m not stupid. just very ill. there’s so much mis-information. my doctor tries to ease my pain but he’s so damn busy. i often feel so alone. i worry too much about myself and others. i stay in a lot due to the intense heat. but soon enough i’ll be dealing with trying to get ready for cooler weather. it’s never great. fall is my best season. i wish we all could find the relief we need from these damn diseases. a great nite sleep would be more than welcome. no one likes a constant complainer. i try not to talk much about my battles. i need support and help. i know we all need that. gentle hugs and good wishes to all of you in this battle. i pray for peace.

The heat this year has bothered me more than usual since the fibromyalgia diagnosis in April of this year. The fibro fog is worse, my hands, arms, legs and feet swell and I feel crumby most of the time. I continue to work full time but some days are very hard on me. I stay inside on the hot days with the fans or a/c. This condition makes it hard to lead a normal life.
Take care, everyone. I hope the winter brings a bit of relief.

I’m in Texas and each year is hot and difficult. I don’t have a car so I use the bus and walk a lot. I helped a friend but from working in the heat I ended up with a flare and had to stop. We were in 106-108 heat in the sun.
For the rashes underarms and wherever skin touches skin – I put on antiperspirant then corn starch. My problem areas are on the skin of the ribs below my breasts and on the underside of the breasts themselves. I also have a fat belly and I put this where the skin touches. I also get horrible rashes unless I use that combination on the inner thighs too.
I followed some tips from here about post shower cooling using a fan. I like how that works, but I have to move the fan some as I get too chilled from it.I also don’t use soap – I have been using Bonner’s as shampoo and body cleanser so I don’t get chemical reactions and too much drying.

Wow, ask us to complain and look at us go!! (Thanks for the opportunity) Usually I am only affected by cold but not this summer. I can’t stand it and have insisted the ac remain on 24/7. That is unheard of for me, and it was just two months ago I was insisting to my husband to turn it off because I was chilled. I am miserable, have increased headaches, and feel like I’m in someone elses skin. I already have skin sensitivities, like most of us, and clothing will soon be optional in my home! I live in GA which is known for it’s hot, humid summers but I reside in the mountains and we are always ten degrees or so cooler than everyone else. This year that doesn’t seem to matter to my FM/CFS. I’m not ready to wish for winter because I’ll be commenting again on how bad I feel. Just when I think I have a handle on things and have a “routine”, something changes and I have to adjust to something new. Thanks for the vent and….stay cool!

I guess I’m more like Becky….I have CFS/FMS and I prefer the heat — to a certain point — more than the cold, wet winters we get in Vancouver, Canada. My husband bought me a heating blanket that I use a lot in the winter, and it helps! I too get the excessive sweating on my forehead, pain, discomfort from swollen ankles, feet, hands in the heat, but the winters are worst for me. We went to Mexico in April, when it was still cold and wet here, and I felt such a difference in my pain levels. I could cool down in the pool or ocean and I made a point of not sitting in the sun to avoid overheating. It’s like I’ve seen it written many a times, we all have to find what works for us…I am still trying to wrap my mind around
not being able to return to my job, because I simply can’t function well enough to be an efficient and reliable employee! I’m 48 and have been working since I was 16. The financial strain on it’s own is enough to make the pain worse!!! I’m about 9 months into my diagnosis and am still really having a hard time accepting all of this.

There, I complained. Thanks for listening
Wishing better health and happiness to you all!

I too have noticed that I can’t handle the heat like I could before being diagnosed with fibromyalgia. I live in Louisiana and the temperatures have been in the upper 90′s to 100′s and that means the humidity makes it even hotter(at least 10 to 15 more degrees). I have sweating, hot flashes, and swelling in my hands and feet. I haven’t been able to wear my wedding rings and others rings for months now. And I love my jewelry. It won’t cool off down here until Thanksgiving or later.

I am so sensitive to temperature that a one degree increase can send me into a feverish foggy fit. The guy at work thinks it is a game to turn up the ac at work to 73..72 is my max. So Monday when I started to get sweaty feverish foggy and a headache…sure enough 73.. it ended up a bad flare and sent me home by noon and crying by the next day from the pain. So tomorrow I will check the thermostat before I sit down…there may have to be tape involved…

Usually the weather here in San Diego is just right especially in the part of town where I live but the summer heat and humidity has been doing a number on me lately. I tend to get migraines easily, my energy is depleted and I’m highly irritable. Then to top it off I’m taking this shot called lupron to prevent me from having a monthly cycle so my body thinks its I have no reproductive organs and now I have hot flashes often. But hopefully I can soon take something to make the hot flashes go away…then great more meds.

Cold has become my intense enemy, whereas heat allows me to function on a normal level. I feel winter creeping in and it reminds of the decreased level I’ll soon have to return to.

Fibromyalgia and CFS will always continue to amaze me. There may be a set of symptoms all sufferers share, but there is such variety in between those, too. It causes my mind to try to take these disparate pieces and find how they all fit together. My illness has become my biggest puzzle to solve.

To all those suffering this summer, may this winter bring you the relief you need.

This heat just wears me out! I am already tired all the time, but the heat just makes me want to stay in and not come out til winter. Here lately I have been sweating so much more. And this fibro fog, I have to figure out what day of the week it is when I wake up in the morning. I want to blame all this on something other than fibro

Most of my CFIDS/FM friends prefer summer and feel cold all through winter. I am the opposite — although I love the increased daylight in summer and being able to wear less clothing when I have to go out, I really hate the heat and humidity of this season. Here in NYC, we also have very dirty air and “ozone alerts.” A lot of “normal” people have breathing problems and allergies and respiratory infections here in the summer.

I think I mentioned on this site that I have a bunch of cooling items from Polar Products — they rely on gel products that you keep in the freezer and put into special clothing, where they stay cool for about an hour out in the heat. The one I use the most is an item you tie around your neck — just a suggestion so you don’t need to start out spending a lot of money on all the clothing items they offer.

When I wear skirts or dresses, I wear a “split-slip,” or culottes, made of silk, so my thighs don’t rub together. Nylon ones will just make you sweat, don’t bother with those. The silk ones are not that expensive, around $20. I also sometimes use what’s called a “bra liner” for that sweating between and under the breasts. It’s a cotton-polyester item that you put under the front of your bra, and it soaks up a lot of the sweat that would normally be irritating you there. Of course you have to wash it out each time you use it, so it’s good to have a few.

I have a recurring itchy scalp condition that my dermatologist diagnosed as “discoid lupus.” It’s NOT regular lupus; I don’t know why it has that name. He prescribes a liquid for it — generic name 60 ml fluocinonide topical solution 0.05%.

Other than that, folks, I use all the air conditioning I need. I too live in an old house that is very inefficient to air condition. But I can’t manage without it. Carry on till Fall, folks.

I never realized it was the heat that made me swell so much,especially my face( to the point I could scare children).I am planning a trip to see Grand kids. Its a long flight and I will be totally exhaused when i get there. Last time I swelled so bad from feet to hips I worried I would have a stroke.I refuse to let this disease rule me.I live everyday for my hubby and kids.They will have GOOD memories of me,not fibro. God helps me when I overdue which is too often. I dont want people to know I am sick.

I live in Phoenix, so the heat is something I deal with for a good portion of the year. Now that university is back in session, I am forced to spend a significant amount of time walking outside in the 105+ weather. By the time I get home at night I am sore all over and physically exhausted. Which isn’t helpful when I still have things to do around the house and assignments to complete. I can also tell when we are going to get a thunderstorm, the difference in humidity makes me feel like I have the flu. I am thankful for air conditioning, without it I would be in a flare the size of Texas!

i live in canada i have seen a # of Doctors and i have never heard one say anything about a protacal to manage the chronic fatigue illness or its symptoms can anyone help me

The heat is almost unbearable, and I’m 35 years old! Does anyone else get red hands and feet from anything over 70 degrees?

I am extremely sensitive to atmosphere changes. Here comes the rain, and I know because my head is heavy, vision is confusing, breathing s a bit labored and I am SO TIRED. SIGH.