How does high temperatures affect you?

[Judie P]

Hi all.  I am in Northern California where the weather is no less than 100 degrees for the past 3 days and will continue through next Thursday.  When I am in the heat, my systemic symptoms seem to get worse.  Sometimes my legs get stiff and feel heavy, and I get more digestive issues.  Anyone else have a problem with high temps?  Today was 107 and the humidity here is extremely low, so very dry (we don't get rain during this time of the year).

[sixty]

The heat positively oppresses me and I can't really do anything except sit.  I'm lucky I have AC now tho.  It never used to bother me that much, but it's either age or Sjogrens.  I know of others having the same issues.  My aches and pains don't really change that much tho, it's mostly just lack of energy and more fatigue.  Today I did notice more stiffness than normal in this heat.  I live up west of Seattle and it was 90 today.

[meirish]

It saps all my strength. I have to stay out of the weather and I live in Minnesota where the humidity is high. It is high now and the driveway is damp all day. Looks like it has rained and it is the humidity keeping it so damp.

I really doubt that there is anyone with an autoimmune disease who isn't bothered by the heat of summer. It is very common. I can do a very simple task and the water runs off my head. Soon we will be complaining about the cold. Actually, I have myasthenia gravis also and the heat makes my weakness even worse so I do better in the winter.

My neurologists says in summer all her myasthenia patients get worse because of the weather and need their steroids increased. Always something that keeps us on our toes. Don't you just sit down in your recliner sometimes and collapse. I am so thankful for my chair as it helps me rest and re cooperate a little.

Try putting a wet wash cloth around the back and side of your neck. This will dry out fast with low humidity and it helps cool your body and your brain off. When I was working on the floor as a nurse all of us would do this in hot weather. This was the only way we could keep working in the heat..even with A/C. Good luck. meirish

[araminta]

In the UK we've had some hot and very humid weather this summer, I have found it almost intolerable.   Unable to sleep so feeling even more tired than usual.   

[snoweye]

My 2 hot cents...

Pre SS I was king of the sauna however since symptoms started in 2015/2016, I have really struggled with hot weather.I believe the heat caused my second major flare up of symptoms in 2017.

However I pleased to report that this year I have coped quite well with the heatwave in the UK. Partly due to symptom improvement and partly due to various strategies.

Throughout the heatwave I was taking 2 cold baths a day and the effect on body temperature (at least in my case) lasts for several hours. There can be risks to this so not something I really recommend. With cold water you need to accustom yourself gradually.

If you can afford it, AC would be a more sensible option. AC can dry out the air, which is not good for us, however I believe you can buy AC units with built in humidifiers.

Another option, a product that I just discovered lately is a "cooling vest". Look it up on Amazon.

Wet t-shirts work too.  Do a quick rinse cycle in the washing machine, spin as normal, then put on.

[Carebear]

Ugh.  Even in Western Canada we've had terrible weather.  One day cold, windy  thunderstorms and trenching rain. Next day over 30 degrees Celsius, staying a few days. Then back to dark, windy wetness. 

The heat for me is deadly.  It saps my energy. And I forget to come inside,  I come close to getting heat stroke.  It comes on quickly. Once that hits me I'm down for the rest of the day. I need to stop living in denial!

Thankfully way up north where I live, our heat warning days are far and few between.  Not like many of you folks.

[Carolina]

I think most of us with Immune System Disorders suffer from temperature dysregulation.  For me it is sensitivity to heat, I cannot abide the temperature to be set above 72-73 in our apartment.  I don't spend much time outside, especially now when most days are well over 90 degrees.

Thank goodness for Central AC.

There are also neck cooling wraps:
Evaporative: 
https://smile.amazon.com/Ergodyne-Chill-Its-6602-Evaporative-Cooling/dp/B001B5I57I/ref=sr_1_11?crid=RH1S45ACAZBN&dchild=1&keywords=neck+cooling+wraps&qid=1597669116&sprefix=neck+cool%2Caps%2C166&sr=8-11

Ice:
https://smile.amazon.com/Icy-Cools-Ice-Bandana-Black/dp/B000PGQ9U4/ref=sr_1_28?crid=RH1S45ACAZBN&dchild=1&keywords=neck+cooling+wraps&qid=1597669225&sprefix=neck+cool%2Caps%2C166&sr=8-28

My normal body temperature is about 87 degrees, and yet high temperatures are hard for me to bear.  Go figure.

I do believe some people with temperature dysregulation also find very cold weather taxing, as well.

Regards, Elaine

[Robi5]

For me I’ve found that I do better in hotter weather, but to a reasonable degree.  Also since being on Plaquinil I’ve done significantly better with joint pain in the heat.  I’m actually much worse in the winter, and even now on a beautiful summer day, I’m thinking of how I’m going to get through another Canadian NorthWest winter and deal with my Raynauds.  I have to work outside, and I‘ve been almost in tears (I would have tears if I could produce them lol) because of the nerve pain in my hands when it gets below freezing. 

So it seems its different for all of us.  I’m a forty y/o man, so probably changes some things.

[araminta]

^ That sounds terrible, is there no way you could do indoor work in winter?   Or move somewhere warmer?

[Robi5]

Thanks Araminta for your kindness.

My wife is dual citizen of US and Canada, so it would be easy for her.  I?m Canadian only, and Vancouver is already the most temperate of the cities up North (identical weather to Seattle for reference).

The winters are not bad here actually, but the raynauds that so many of us are afflicted with cuts us off at the knees so to speak.  I?ve been trying different kinds of handwarmers, but they don?t help once my hands go numb.  I have to be very proactive with them.

I?m just trying to stay in the present and enjoy it, as the temperature here is very mild at this time.  Trying to push the worries away until the time comes

Was also thinking more about what the OP said and my past experiences.  Excessive heat, yes, it does make me feel very very bad, especially pre-Plaq.  I?ve found that not staying in AC on the heatwave days makes the Chronic Fatigue worse.

[araminta]

I understand what you say about living in the present, we just make things worse for ourselves when we start obsessing and panicking about our problems.   I think mindfuness of the present is important for our mental health and our physical health.

However it's maybe also worth thinking (calmly!) about possible options for the longer term, given that the Raynauds is an ongoing problem.

[Deb 27]

Judie, I feel much worse in the summer with the heat. My joints hurt more and the fatigue is worse. We've got a long way here for cooler weather!!!

[jazzlover]

For sure. I've always hated the heat. I grew up in Texas where it's hot about 9 months of the year. Now I'm in SW Missouri and it's only hot about 3 months of the year. Whew!!

I prefer temps around 70-75, but that's in a dream world !!

AC is my friend.

Hope you will escape the fires that are going around in CA. I would die from the smoke. Just awful!!