Autoimmune conditions and hot weather
June 1, 2022 9:39 PM   Subscribe

I have fibromyalgia and it's in the mid 80's and I'm useless and everything is hell. More inside.

YANMD. Fellow fibro / autoimmune disease sufferers, is there anything that helps lessen the burden of hot weather?

I know the obvious stuff like drinking cold drinks, staying in shade, etc. I only have a window a/c but am using that and staying near it, and I'm only going out when necessary.

Even if I don't actually feel hot in the moment, my body is in so much pain, all kinds of pain. And my brain is past foggy and is just mush. Im not getting anything done but also not resting well.

Got some relief from drinking aloe vera juice and covering myself with Biofreeze, but this is still a nightmare, and it'll stay this hot here in VA for a while.

I am on a very tight budget and can't buy other a/c.

I don't just want to feel cooler; I want to lessen the impact of the heat on my pain and fatigue.

I am open-minded to other remedies and will run things past my doctor.

Any of you have tips?
posted by mermaidcafe to Health & Fitness (19 answers total) 4 users marked this as a favorite
Are quick, cold showers possible? Ice packs on the back of your neck?
posted by Threeve at 9:57 PM on June 1, 2022

Best answer: Sorry that I can't recommend anything for your pain specifically, but I can tell you how I've successfully cooled rooms without air conditioning. I've hacked together things resembling a DIY swamp cooler, which is basically blowing air (from a fan) across or through a wet cloth.

You have to be careful if you use this long term, to avoid mold in the cloth or in the area, but it doesn't really make the room damper. It does a remarkable job of cooling the room, though.

When I've tried it, I've also found a way to put ice gel containers and/or other frozen things in front of the fan in addition to the wet cloth.

If you Google [DIY swamp cooler] you'll find more elaborate setups than I used, but they might be worthwhile for you.
posted by amtho at 10:01 PM on June 1, 2022

Best answer: A cheap swamp cooler works in dry climates like the western US. It is unlikely to work, and may even make things worse, in the humid eastern US. I would do some research before spending any money.
posted by caek at 10:45 PM on June 1, 2022 [6 favorites]

Best answer: Can you soak your feet in cool water? A filled plastic tub with an ice pack floating in it can stay cool for a surprisingly long time. Set it up where you spend your time sitting, and lay out a towel next to it so it’s easy to dry your feet right away. If carrying a filled tub is difficult, use a smaller pitcher to bring water to it.

Growing up in Texas, the best way I learned to bring my perceived temperature down was keeping a damp towel on the back of my neck. Something about the evaporation and the cooling on that particular part of the spine with all the nerves? I don’t know, but it’s served me well. You could get a sacrificial bag of frozen peas and wrap it in a wet towel that you sling around your neck, so there is some weight to keep it in place. Just break it up with a few whacks after it freezes into a solid chunk again. Way cheaper than fancy gel cold packs.

Check the filter on your AC. Poor air quality means allergens means inflammation means pain. Check around for a used air purifier and buy new filters for it, if you can budget for it. Talk to your doctor about antihistamines and seasonally specific allergy treatments. It’s hot, but consider wearing a mask most of the time, maybe just a thin surgical mask, but it will still help filter allergens.

Of course hydrate yourself. There’s a reason sweet tea is a thing in the South. Get water bottles and put them within arms reach of yourself in places you normally are. Bedside, near the couch, desk, kitchen, etc. Go around and top them up before bed or every morning. You could also try to have a pitcher of something desirable in the fridge all the time. I like some of those little water flavor squeezy things, often the store brands are the best/least gross, and you only need like one squeeze for many cups of water to make it into a flavored drink and not plain water. Really easy to keep around. If aloe vera juice helped, maybe you need more magnesium and calcium? I think those are the ones that help with muscle aches, anyway. Talk to your doctor about supplements or things you can drink or eat that might help. Oh, and put bananas in the freezer and eat them with a spoon. That’s not to hydrate you, it’s just a treat because you deserve it.
posted by Mizu at 11:30 PM on June 1, 2022 [1 favorite]

Response by poster: I imagine a lot of my pain is from the heat worsening inflammation and eating/ drinking anti inflammatory foods would be a good idea. Turmeric, ginger, berries, tart cherry should all be good.

I maxed out the Aleve dose today and I'm not sure it helped that much; I try to avoid ibuprofen.

Any recs for inflammation?
posted by mermaidcafe at 12:05 AM on June 2, 2022

Best answer: Hey, I also have a medical condition that's considerably worsened by heat and live in a place with shitty summers and no real A/C. When I lived in an attic studio (Jesus) during our first couple massive heatwaves, I'd keep an old-fashioned rubber hot water bottle in the fridge all day, take it out when I went to bed and then hold it against my abdomen. It worked pretty well to cool off, maybe due to blood flow?

Again, did this mostly when I went to bed in order to fall asleep, but you could buy a few cheap ones and rotate them out throughout the day I imagine. I also second cold foot baths, sometimes I'd combine that with the cold water bottle before bed and it was really helpful.

Sorry you're dealing with this, it fucking sucks.
posted by peakes at 12:46 AM on June 2, 2022 [1 favorite]

Best answer: Any recs for inflammation?

If you start looking into anti-inflammatory diets you get into some pretty annoying weeds with people trying to sell you lots of things and a whole bunch of unsubstantiated claims. What’s pretty clear is that eating a majority of less-processed foods, high in fiber and an array of nutrients, is best. There’s also a good amount of evidence showing that walnuts and olive oil are helpful, and that fatty fish have a lot of benefits because of their healthy fats. Luckily, sardines and other tinned fishes are great sources of these nutrients so you don’t need to be living on the coast to enjoy them, and they can be gotten fairly cheaply and stored easily. Look for different kinds of tinned seafood at international markets for great prices and interesting flavors. Mackerel is wonderful with sautéed vegetables and brown rice, sardines are great with lemon and capers, canned salmon is perfect for a salad.

If any of your pain is from digestive distress, you could try iced ginger or fennel tea. I know someone who swears by them both, though fennel is the only one that I notice a difference from. But if you enjoy a flavor of herbal tea go ahead and have a bunch of it because either way you’re getting more water.

I try to always have a few different types of nuts, always raw and unsalted. That way I can just grab a handful for a little snack, or I can make my own nut mix and feel super fancy, or toast them and add to whatever I’m cooking. Walnuts are the ones that apparently help the most with inflammation, but most nuts have at least some of those good fats. I avoid salted roasted nuts because that’s extra stuff I don’t need and it covers up the flavors I actually enjoy. You can keep them in the fridge if you’re worried about them spoiling in the heat.
posted by Mizu at 1:22 AM on June 2, 2022 [1 favorite]

For me personally, my fibro handles hot summers much better if I eat a very low carb diet consisting mostly of vegetables, nuts/seeds, eggs, and plant fats. This may not be doable for you depending on budget and energy, just putting in my own experience.

The submerging your feet in cold water thing is great for me too. And if you have the fridge space, seconding iced herbal teas (holding a cold drink helps me almost as much as drinking it) and the cold hot-water bottle sounds brilliant, I’ll be trying that this summer.
posted by cabbage raccoon at 3:08 AM on June 2, 2022 [2 favorites]

Feet in cold water = fabulous! But try drinking room-temperature beverages. It seems counterintuitive but can improve hydration and sweating, which thus cools you down. There are also cooling breathing techniques that you can try -- just have a bit of a google.
posted by bwonder2 at 4:34 AM on June 2, 2022

When I lived without air conditioning, we used to fill spray bottles with a mist setting with water and spray ourselves with it. Drugstores usually have these types of bottles.

You can also wet and freeze washcloths to cool yourself off with.
posted by FencingGal at 4:47 AM on June 2, 2022

Here's my holy grail of temp control! It's a wearable cooling (and heating) device called an Embr Wave. It's not cheap but it's definitely less expensive than an AC and the associated electricity costs. It's been life changing for my mom who has suffered from hot flashes for 20 years since menopause. I got her one for mothers day a few years back and she hasn't had issues since. It tricks your body into thinking it's cooler (or warmer, depending on the setting) by cooling or heating the inside of your wrist. I tried it myself and it works shockingly well. Highly recommend.
posted by ananci at 5:03 AM on June 2, 2022 [6 favorites]

Best answer: I also have an autoimmune disease (MS) and get wiped out by the heat. Lots of good suggestions above. Here's my go-to list:

  • Taking a short cold shower. This can have an immediate, almost miraculous effect, especially on heat-induced brain fog.

  • I keep a shoulder wrap heating/cooling pad in the freezer, and just take it out and wear it.

  • Wiping down the back of my neck and head with a cold wash cloth.

  • I beta tested the Embr device mentioned above. It was interested, but I decided not to buy it. Might be worth a shot, though.

  • Running my wrists under cold water. I learned this one at camp as a kid. You have lots of blood flowing through your wrists and the arteries are near the surface. So this is a good spot to apply the cold.

  • Good luck with this!
    posted by Winnie the Proust at 7:14 AM on June 2, 2022 [1 favorite]

    Best answer: My autoimmune conditions are worse in the cold, and I am in hot weather 75% of the year (which I enjoy and prefer). But here's what helps my inflammation:

    + Activate the parasympathetic nervous system response: vagal toning exercises, lavender essential oil, box breathing.

    + Golden milk (animal or vegan milk + turmeric + honey/maple syrup) is great for sore joints from inflammation. Add some black pepper to help with absorption.

    + CBD lotion on joints

    + Stretching, gentle yoga

    Other cooling ideas:
    + Peppermint oil is cooling (But it can also be drying. Avoid if you also have Sjogrens.). Peppermint tea over ice might be a nice way to cool down.

    + Sheetali breath is meant to have a cooling effect on the body. There's lots of instructional videos online.

    In my experience it's not just the temperature but the big change that triggers a flare. The body is kind of in shock. It happens for any extreme change in the weather whether it be temp, barometric pressure, humidity. So for me, water and stretching helps my body "process" the extreme adjustment a little more efficiently. I've no idea if there is any clinical science behind what I'm saying but that's been my personal experience.
    posted by crunchy potato at 8:00 AM on June 2, 2022 [3 favorites]

    One additional detail about the cold showers. In my case, it's sufficient just to stick my head into the cold shower for about a minute. This is much easier -- don't have to take all my clothes off, don't have to deal with the discomfort of cold water all over my body. If I just lean over and stick my head and neck into the cold water, it does the trick.
    posted by Winnie the Proust at 8:05 AM on June 2, 2022 [1 favorite]

    You may want to look into cooling pain-relief patches such as Salonpas with menthol--the same idea as Biofreeze, but the cooling effect will last significantly longer and you can slap them just on areas you want to target. I LOVE those suckers!
    posted by epj at 9:09 AM on June 2, 2022

    Agreeing that just getting your head and neck under some cold water is sufficient to cool down. Sometimes I just have a small tub of cold water and dump it over my head while I'm at the sink.

    I don't have an autoimmune condition (as far as I know) but I do get horrible brain fog type muzziness in the heat and cooling down my neck and wrists (cold packs, holding a cold drink against my body, quick cold water rinse, etc) has helped me in the ways that others have described here.
    posted by spamandkimchi at 9:49 AM on June 2, 2022

    I got a deep-ish kiddie pool. In addition to cooling my whole body, the cool water relieves some of my joint pain. A cool bath would do the same.

    I picked up a used air conditioner in great condition last year for $40. Given what a huge effect this has on your life, it's worth keeping your eyes open to see if you can swing it. You may also be able to maximize the effect of the one you have by curtaining off the area around it.
    posted by metasarah at 11:19 AM on June 2, 2022 [1 favorite]

    ... just here for the advice, really. (Me = in Oregon, one AC, upstairs apartment in the metro, already miserable on the warm days, and dreading the thought of it getting anywhere close to last year's 115).

    I suspect with where you're located, part of the problem is humidity? Humidity has always been a problem for me, and my tolerance for it's gotten a lot lower the last couple years.

    The whole towel over a fan trick works wonders if you're not dealing with high humidity - or if the need to filter wildfire smoke from the air is a higher priority.

    Fans. The more air movement, the better, even in addition to the AC. We're in a 760 or so sq ft upstairs apartment, have three ceiling fans, three round vortex-style fans, and at least three other smaller fans... and I'm still contemplating more.

    In the past, I've moved my mattress to the floor. I've soaked my top sheet and put it and only it covering me in bed. I've covered windows with blackout curtains, heavy blankets, and even aluminum foil. (Which honestly worked best, but my landlord here would have an utter cow.)

    One thing we do year-round to help control rooms with different temps, but still allow pets through, is to hang blankets (usually just 2.5-3 yards of inexpensive fleece we got on sale from Joann's, no modifications necessary) across the doorway. Currently, we have sticky hooks with a cheap curtain rod that they're just looped over. Since there's a preschooler in the house that tends to knock them down, we've added a couple binder clips to each to make the blanket a bit more fall-proof. That allows us to say, have an imaginary "door" at the end of the hallway where there's no door. (I've discovered that the plastic mushroom velcro tape (like what Command sells as picture frame hangers) is really cheap on Amazon, and that's my new favorite tool, so I have blinds closed and fleece blankets attached over some windows with that, already.

    Oh, yeah. And I have no freaking idea what else I'm going to do this year, because I already feel so much worse than last year at the same time. (I really did not still want to be in this apartment by now.)
    posted by stormyteal at 12:17 PM on June 2, 2022

    I have a poorly diagnosed autoimmune/ inflammatory condition that is better in warm weather. Eliminating dairy was very helpful in reducing inflammation.

    I don't have AC at all. To stay cool, I have a fan pointed at me, and use a mister if that's not quite enough. Moving air cools you by helping sweat evaporate. Keep your desk near the AC. Stay hydrated; I like weak iced tea with lots of ice. I wash my hair and let it air dry, which will be less helpful not that I've cut it shorter, but still useful. Open windows at night, then get up early and close them, and close drapes to keep the sun out. If you have 2 floors, open 1 window down stairs and 1 window upstairs. Hot air will rise and exit; my stairs are always breezy this way. I run a dehumidifier in the basement, and that helps a bit.

    No ice cream for me because it's dairy, but I routinely freeze lemonade, limeade, or OJ to have as slush, or make some kind of lower-sugar fruit ice. Cold food is cooling. Spicy food can be cooling because it promotes sweating, so lots of Indian dishes for me, or spicy salsa.

    Exercise helps me with brain fog. I take a nightly walk with the dog; she can be off-leash when there's no traffic in my neighborhood, and we can play and I can train her. With chronic illness and pain, it's really hard to maintain muscle strength and conditioning, but also really important; this is a huge struggle for many people I know with chronic conditions.
    posted by theora55 at 1:25 PM on June 2, 2022

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