This heat is killing me!

Joined
Jun 7, 2021
Messages
14
Reason
DX FIBRO
Diagnosis
05/2021
Country
US
State
OR
I used to LOVE the heat. I lived in Las Vegas for 4 years and had no issue with the summers. I grew up in Washington State and was always the penguin that hated the cold.
This summer, however, I have noticed that anything over mid-70's and I feel like my skin is on fire and my body starts aching. It was so bad last night I wanted to cry. Arms, legs, neck aching horribly.
Has anyone found a good solution besides squirreling away indoors?
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
1,508
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
Unfortunately, the heat we are experiencing in many places is not a one-off or something that will go away. In fact, since it is due to irreversible climate change we can only expect it to continue and in fact to get much worse in the ears to come.

There's nothing you can do about the weather, so I don't think there's any solution besides staying indoors when it is too warm for you. Make sure you also drink a lot of water. Do you have air conditioning?

Where I live we are accustomed to high temperatures, so even though it is getting hotter I am OK with it, although my air conditioning bill is a bit higher.

You might consult your doctor, in case it could possibly be caused medically, or be treated in some way. If I found myself suddenly intolerant of heat, I would investigate it medically first.

Other than that.......plan a move to Alaska? It's a nice place to live, I hear.
Although it is warming up there as well, I haven't heard of any heat waves there yet.
 

Jemima

Very helpful member
Joined
Jul 30, 2020
Messages
508
Reason
DX FIBRO
Diagnosis
11/2019
Country
PT
I used to LOVE the heat. I lived in Las Vegas for 4 years and had no issue with the summers. I grew up in Washington State and was always the penguin that hated the cold.
This summer, however, I have noticed that anything over mid-70's and I feel like my skin is on fire and my body starts aching. It was so bad last night I wanted to cry. Arms, legs, neck aching horribly.
Has anyone found a good solution besides squirreling away indoors?
Hi purplechicken,

I'm so sorry the heat is effecting you so much. That sounds really difficult 😣

I've been much more sensitive to heat since my fibro got going - used to love it, like you, too! Here in central Portugal, high summer brings temperatures well over 100°F (high-30s °C) and heat waves that can push over 115°F (mid/high-40s °C) which I've found incredibly difficult in recent years. The heat drains my energy, makes me ache, and stops me thinking clearly or sleeping - which in turn leads to big-ass pain flares.

The only tactics that I've found helpful are staying insanely hydrated, ice water, wearing hats, cold shower, wet cloth on the neck, and staying out of the sun as much as possible when the heat is really cranking. Air movement also seems to help, so fans are good.

If you come up with any other helpful tactics, I'd love to hear them - it's certainly a challenge!
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
1,508
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
There are cool scarves. You can buy them or you can make your own. Basically it is a neck scarf, long enough to go around your neck and tie, that has water absorbent manufactured crystals inside. These can be purchased online or you can get the crystals yourself at garden supply places. You just make the scarf wide enough to sew the crystals inside it, then leave the ends flat so they will tie. You soak it in water until the crystals swell up and put it around your neck. It will evaporate very slowly, and may go a long way toward keeping your body temperature down.
If you look up "how to make a cooling neck wrap" on YouTube there's a video on how to make them.

There's also a water-absorbing fabric you can buy that does the same thing. It's a synthetic that feels more like plastic than fabric. Don't know what it is called.
 

Jemima

Very helpful member
Joined
Jul 30, 2020
Messages
508
Reason
DX FIBRO
Diagnosis
11/2019
Country
PT
There are cool scarves. You can buy them or you can make your own. Basically it is a neck scarf, long enough to go around your neck and tie, that has water absorbent manufactured crystals inside. These can be purchased online or you can get the crystals yourself at garden supply places. You just make the scarf wide enough to sew the crystals inside it, then leave the ends flat so they will tie. You soak it in water until the crystals swell up and put it around your neck. It will evaporate very slowly, and may go a long way toward keeping your body temperature down.
If you look up "how to make a cooling neck wrap" on YouTube there's a video on how to make them.

There's also a water-absorbing fabric you can buy that does the same thing. It's a synthetic that feels more like plastic than fabric. Don't know what it is called.
Love this! Top tip :cool:
 

Dusty1957

Active member
Joined
Dec 26, 2020
Messages
43
Reason
DX CP
Diagnosis
00/0000
Country
US
State
WI
I used to LOVE the heat. I lived in Las Vegas for 4 years and had no issue with the summers. I grew up in Washington State and was always the penguin that hated the cold.
This summer, however, I have noticed that anything over mid-70's and I feel like my skin is on fire and my body starts aching. It was so bad last night I wanted to cry. Arms, legs, neck aching horribly.
Has anyone found a good solution besides squirreling away indoors?
I am bothered more by cold. However, one thing that is weird is that when there is so much sunshine, I feel bad, when it gets dark, I am much better. I am not well at all, but can tell the difference of feeling better at night. Is this weird??
 

Jemima

Very helpful member
Joined
Jul 30, 2020
Messages
508
Reason
DX FIBRO
Diagnosis
11/2019
Country
PT
I am bothered more by cold. However, one thing that is weird is that when there is so much sunshine, I feel bad, when it gets dark, I am much better. I am not well at all, but can tell the difference of feeling better at night. Is this weird??
Some sites I've read tie light sensitivity - or photosensitivity - to fibro. I know that I struggle with bright lights now. Being in the bright sun without shades can feel overwhelming, and I find night driving much more difficult than I used to. Dusty, do you think it could be to do with the brightness, perhaps combined with specific temperature sensitivity? That sounds very frustrating.
 

Jemima

Very helpful member
Joined
Jul 30, 2020
Messages
508
Reason
DX FIBRO
Diagnosis
11/2019
Country
PT
Hi all,

I've just been reading about allodynia in relation to another thread here in the forum, and found some info RE a form of allodynia that specifically pertains to heat sensitivity. Perhaps that might be relevant to you both?

From the website Living Smarter With Fibromyalgia:
Thermal Allodynia: The body overreacts when exposed to heat or cold. For instance, an ice cube barely touching the skin can cause extreme pain or a sunny day can lead to unbearable discomfort on the skin even without a sunburn.
...

Someone with an extreme sensitivity to heat may need to avoid hot showers or staying outdoors in the heat for too long.

Perhaps worth exploring further 🌷
 

JayCS

Very helpful member
Joined
Sep 5, 2020
Messages
654
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
I prefer staying indoors a lot, outdoors for short stints is OK tho, as long as it's not too windy, cos that's even worse for me than hot or cold. Since fibro my Raynaud has got worse, so I usually have several (up to 4) pairs of socks on even in the summer, or at least with me so I can put them on if I'm not in the direct sun. All year I wear layered clothing and special extras like "rain legs" for my thighs with me in my rucksack.
Luckily my wife has become very heat sensitive and has also always been very diligent about keeping all windows closed and blackout or at least plissé blinds down in all rooms, sunshades over the windows on the sunny side, our balcony. And then as soon as/if the temperature goes down at night, to tear everything open.
Apart from that like Jemima says a short cold shower regularly (20 seconds'll do) or cold washing at least my arms under the tap, if possible legs etc. with a flannel/wash cloth. Just have to watch my sensitive skin if it's too often, so I gently pat it dry. As I think it was sunkacola'd add 'cold' isn't really possible if you live in the desert where even the cold water gets heated up.
Oh, and in Germany we have the luxury of cool cellars in most houses. When I studied I went down there, since I was less heat and more cold tolerant when I was younger.
Specific acupressure points helped get my body temperature back to normal after fibro had made me extremely cold intolerant, (achy).
 
Last edited:

aclarkwhitman

New member
Joined
Jul 24, 2021
Messages
9
Reason
DX FIBRO
Diagnosis
04/2014
Country
US
State
GA
I have this too with the bright lights and the driving at night. It’s awful. And I am very sensitive to the heat as well since my diagnosis.
 

DebMarPir

Active member
Joined
Jul 10, 2021
Messages
38
Reason
Undiagnosed
Diagnosis
00/0000
Country
US
State
PA
Two of my doctors believe I have fibro, but the main one wants a third to confirm. If it helps, I have also read that people with fibro can be more heat or cold sensitive. I have been complaining of heat since my perimenopause, then menopause hit, about ten years ago. I recently went off the hormones and found it made absolutely no difference anymore. So I think my temperature gauge is stuck!
 

Dusty1957

Active member
Joined
Dec 26, 2020
Messages
43
Reason
DX CP
Diagnosis
00/0000
Country
US
State
WI
Can't stand heat (especially with humidity). I have also noticed Daylight is bad, night time better). Weird
 
Top