Cooling tips!

For the shower, I stand in a rubber basket of slightly cool water then sit on a stool for a quick 5 min shower. Yes, I agree to minimize flare a gradual approach is best. My go-to is usually a spray bottle of normal temp and a fan of some sort.

Some people have mixed feeling about compression socks & glovest but I am helped tremondously by them. If I plan to go out in the evening or know I will be having to walk a lot I always wear the compression socks and noticed that even if I feel a flare coming I can usually prevent if I can rest briefly with my legs elevated.

A very convenient method for cooling down in Sydney at the moment - we are having very high humidity (hot air from G20 travelling south Nel :), and causing lots of storms) -is standing in the rain. I dont know why it's more effective than having a cool shower but standing in the rain causes my skin too cool down for sometimes afterwards. Getting caught in the rain is a good thing, for me. Nearly as effective as swimmimg in cool water.

blue

Ha ha blue. My youngest used to love dancing starkers in the rain. Now in Australia, every time I grumble about the freezing temperatures here she says ‘oh how lovely, I wish I was there’ I like walking on the wet grass but our garden is overrun with cats and foxes and I have to tread carefully!

Hi Nel,

It's gonna be a lot hot summer in Australia. I heard on the news that 2014 is the hottest year on record. My response (yeah, I talk back to the radio now as the days are long when they are spent on your own) was, "Ya, think?" It certainly felt like the hottest summer I've ever lived through -- with EM it's hard to tell if it's me or the weather.

Walking on wet grass -- as long as it's not spikey grass -- sounds wonderful. But do tread carefully -- cats and foxes. Cats I get, but foxes sound so exotic -- although I have seen them in the wild in Aus. Imported from Britain when they knew no better.

blue

I talk to the radio/TV but also alarmingly to any electrical gadget and a number of inanimate objects. I try not to do it when my daughter is around because of the funny looks I get.
Hi blue, It has been officially declared the hottest year on record here which of course just means a long warmish summer in your terms. I have lived/travelled in extremely hot places pre-EM and revelled in the sunshine and just can’t imagine how you cope in Australia and the US with EM. I hate air conditioning which we hardly ever encounter here as that quickly freezes me so I would feel permanently very ill.
As for foxes, nasty smelly, dirty things - we are overrun with them in urban England. No longer nocturnal they walk into houses and take food and even attack babies. I can’t leave a door open in Summer unless I have it in my sights as we have a baby in the house. We are allowed to shoot them but I wouldn’t be safe with a gun, I once ‘shot’ myself in the eye with an oddly shaped water ‘pistol’ while attempting to discourage a cat from preying on a bird’s nest and chicks. Sorry cat lovers.
The children used to like running through the garden sprinkler. That could be as effective as Summer rain. I have only encountered spiky grass in Australia. My daughter’s grass is 50% thistles too (and ?% wallaby poo). No gambolling in the altogether on that.
Sorry, way off topic again. I can’t seem to stop myself. Nel

Nell,

The spiky grass -it may be called 'buffalo grass' but I'm not sure -- is the hardiest grass. Horrible stuff to walk on when my feet are flaring, and still not very nice when they aren't. I'm not sure that my feet aren't a little tender all the time. Some homes use grass the same softness as used for turf for lawn bowls and that is a whole other story. I could walk on that and enjoy.

Wise of you to stay away from guns, even the water kind.

All this talk is making me desperate to get out of my concrete jungle apartment into a small cottage surrounded by soft grass, shady trees and garden sprinklers. With a beach just down the road. My dream :)

Brilliant Dragica! I maybe would of though of this for my laptop but I never would of thought of using this on my feet! Thank you so much for sharing this great idea .

Dragica said:

HI folks.

Recently, I discovered a wonderful product (see link below). It's an adjustable laptop cooling product that I use to keep my feet cool. It has two fans--one for each foot. I use it on the floor underneath my desk to rest my feet on while I'm keyboarding at work. It doesn't dry out my feet as much as a regular fan. And if my feet are not flared it will keep them cool for several hours. It's pretty sturdy, but I think I will support the raised position (about 10" high) with a piece of wood to help it deal with the weight of my feet. It only helps if the ambient air isn't too hot, but it's great to get elevation and coolness together along with the right position for keyboarding without strain on back or wrists. It really does a great job cooling a hot laptop. It's perfect for using a laptop on your lap for those of you who have EM in your upper legs, etc.

Keep cool, Dragica

http://www.amazon.com/Portable-Folding-Notebook-Cooling-Adjustable/...

Thank you for the heads up on the ice cream Frostbite.

I think it is important to not only pay attention when you are eating ice cream but all foods and drinks. You never know what you might have a sensitivity to and it may not be one of the typical triggers such as alcohol or spicy food. I always hope i won't have a sensitivity to something I like too much such as ice cream and chocolate!!

There are a dozen or so ways to environmentally chill one's feet.
The quicker and faster ways are more dangerous because they use accellerated chilling methods.
One has to be careful about chilling vs. freezing ones feet. With burning foot syndrome you can freeze the feet perhaps with less danger as it feels good, but you still risk frostbite and damage to the skin
so it's really difficult to promote freezing of a part of the body that is hot without fearing a risk of frostbite.
There are at least a half of dozen ways to chill the feet, these are based on using cold air or water or ice packs basically. One may be able to use aeresol sprays as well, but that's a kind of freon freezing that
I would highly discourage, because a ten or fifteen second extra freezing could cause instant frostbite, which is not good.
First we have the traditional way that people get quick relief and that is by cold water immersion. If you are like my mom and have major pain flares you will look at cold water immersion at first, but have
to be aware of damage that can happen to the skin from prolonged exposure to a wet environment. Cold water baths can be in a tub of water or in our case two small waste baskets that fit her feet one
for each foot. About six or eight ice cubes were placed in the water which extended up to her ankles. She might immerse the feet in water for five minutes or so, sometimes as long as ten minutes.
She would often do this when on the toilet in the bathroom but sometimes in a living room. The mess of having to deal with the water and hauling it into a living room without spilling water makes this
method a challenge. In the bathroom we have ready access to water with a hose from the bathtube. Ice cubes was brought in a small tupperware container from the kitchen.

A benefit of water or ice water chilling over air is water draws away heat much faster than air. If the water is very cold of course it will cause side effects and one of them is overchllling and frostbite issues.
Mom's feet would be numbed almost frostbite and she could walk on them without pain while they were "frozen" but unfortunately this still resulted in pain once they thawed out perhaps. So I don't know
if that's a good long term solution. A better solution might be a chilling which is less harsh using ice packs for a quick chilling but ice packs for long term use need to be covered with an athletic sock to prevent
to harsh a cold from chilling your feet and freezing them. A person with burning foot syndome may have hot feet running a temperature of 100F or more when the rest of their body is colder from a cold
room during a flare, so they can tolerate the ice on the feet a lot more than a normal person can, for a bit longer period of time. Still they can get frostbite. The goal is to chill the foot down to about
70 degrees skin temperature, at least for my mom. Which of course would seem to be freezing to a normal person.

A second way to emergency chill a foot or feet is with ice packs. Ice packs are more of an emergency measure to quickly chill the feet. We use blue bead packs that have artificial peas in them as
ice packs. These can be placed inside a mens athletic sock that is cut in half using the lower portion of the sock and held between the feet.

Long term environmental use will chill with cool air and that is much safer. Where the ice water or ice packs are colder the air method is not as cold 58 to 60F degrees seems optimum. Small fans may blow
air over the feet from a cold room. The cold room may be chilled with air conditioners. We use air conditioners that are window air conditioners both winter and summer. We may prop open a door
slightly to bring in cold air and chill the entire living room and bedroom as well as hallway and bathroom. This means half our small house is chilled for mom's feet. That's uncomforable to live in
for normal people and even for mom's upper body, really any part of the body that doesn't have a hot flare. So she wraps her legs and insulates the rest of her body using a system that has evolved
and is really a kind of nightmare of sorts. I state this because it's so inconvenient and it evolved over time. We have windshields to block air from the fans and actually use heating pads wrapped in towels
and even "hot packs" that can be recharged at times to provide heat to her upper body, hands and other areas that may be hot. At times she feets a hot flash or heat in her head as well and may want
an ice pack for her head at times, which is a normal ice pack that one might use in the home. She may be "too warm" in part of her body, complaining about warmth in her back and may want a long
hot water bottle, a thin one that one might use as a hot water bottle to place on her back but with cold water in it to chill her lazyboy chair. So we have a number of added things and steps. Actually 50
steps or so with all kinds of little wraps and things she has developed with towels being used to slightly tighten around her legs to "keep blood from flowing down" as freely to her feet, etc.

The current chilling of the entire room, allows the use of three fans currently that blow on her feet. We have a "windshield" actually more than one with "windows" built with styrofoam and clear
mylar transparency film used from an Apollo transparency presenter roll. That clear plastic can be used to create a kind of windshield around mom. The use of a lightweight home made windshield
keeps the cold air off her face and allows her to look out and watch TV, etc. It's kind of like a snowmobile wind shield for her chair, but unfortunately with all her other wrapping and unwrapping a restroom break can take three hours, where a box to chill just her feet with air would be much faster.

Because the sun affects her feet maybe due to drug reactions as well, she stays out of the sunlight and this means we often pull the shade in the daytime. A large TV with a camera shows the ouside world as
a kind of picture window on the TV. I may use a remote pan head and wider angle camera, like a Canon Pixia Mini X in the future to give her more views of the outside with a remote control from her
iPad mini.

The windshield and air chilling use a LOT of energy to chill a room. A bonus to this is the floor is cold when she walks on it, but she's often walking on carpet and must, so that just offers general chilling.
A better method that uses less electricity is to use a "chill box" which I've developed to chill my mom's feet as if they are in a box which is chilled. I deployed this in a hellish nursing home we were in for a
short time and the box worked pretty well, proving it could work at home or even in an RV. The box I designed for the house but only tested once uses 4 inch tubes for a dryer which are dryer vent tubes
that are flexible. This aluminum hosing can be used to push air from an air conditioner to a chlll box which is basically a small room you put your feet inside of. A really large tupperware container
can be used as a chill box and it's light enough to be moved from a footstool to a hospital bed. The box ideally would be in one of a couple of configurations. A portable one would use fans and ice.
I say it's portable because it's more portable than one requiring an air conditioner, using only ice and fans means you offload the chilling to a refrigerator or bag of ice you buy on the road. This allows you to
use less energy, just a couple of fans blowing through the tubes that act as a swamp cooler. The tubes have ice put inside them, Maybe 8 ice cubes per side and the tubes are setup to hang down beside
the box, with ice in the bottom of the tubes. The ice cubes are normal sized large cubes from an ice cube tray, not crushed ice. And air flows down via fans though the ice cubes cooling the air.
This causes the cubes to melt and eventually they will turn to water and it will block the lower part of the tubes that hang down like a sink trap with ice in each tube, one on each side of the box.
The tubes will fill with water, so you need small holes in the tubes to drain the water out of the tubes and add more ice as needed. This will result in the tubes haveing to be lifted and placed in some
kind of device like a waste basket or bucket to catch the water. The tubes need to be above the level of the water as it drains down into the buckets. One might use a mesh salad collender or something
to hold up the bottom of the tube above the bottom of the water buckets. This prevents a water trap condition, which woudl block the flow of air. The water buckets have to be emptied.
One might design a system that uses ice that remains in ice trays and melts back into water in the tray in a kind of square pipe that is level where the air flows over it. This would allow the ice to melt
in an ice tray and cool the air as it flows over the ice, but leaves the ice in the same tray and reduce the mess of draining water from a bucket. You might put the ice tray back in the freezer and just rotate
trays during the day as needed.

A better way of course if you have the air conditioner and make an adapter would be to create a box around the front of the air conditioner to feed the tubes. You have a box for the feet and a box
that fits over the front of the air conditioner. This has the advantage of being segmented if you design it correctly and this will alllow a box to fit over the front of the air conditoiner with two types of
pipes flowing from it. First we have a pair of pipes that flows from the exhaust of the air conditoner to the chill box. These two tubes are attached to a segmented vent that mates to the air coditioner.
a third hose from the back of the box flows back to the intact of the air conditioner for recycling the air back. If a box covers the entire air conditioner attached to the tubes the entire thing is enclosed
with blowers, the fans of the AC and a temperature control being the AC controls. This gets rid of a lot of extra parts and uses a three sets of tubes and a box for the feet and one box attached to the AC.

I created a prototype box that fit in front of the air conditioner with cardboard boxes adapted a bit with tape, a real "red green" kind of duct tape hillbilly invention prototype. It proved that the concept
would work and I could create a more permanent better box attachement for the AC after testing this and perhaps even just use a makeshift cardboard box for the AC unit.

This has an advantage of using a box that is big enough for the pillows to be inside it for the feet, the chill box for the feet and an AC that has all the chilling and fan features you need.

A fourth way to chill the feet is by using a chill therapy pad, which is a kind of ice pad and cooler design. This is like an ice pack but lasts much longer. Perhaps four hours or more. You can uses a system
that pumps water into a cold therapy pad, which is a pad with tubing in it for ice water to flow through it. There are used units called EB ICE units out there, but you may need to buy the chill pad for one
if you get one of these off ebay. Be warned that you will need to cover the chill pad and not use it directly on your foot or you will be risking frostbite.

EB Ice units are out there, without the pads often on ebay for about $50. A replacement pad from a different manufacturer is available for about $50.
The EB Ice option I thought would not work very well, becasue mom's feet seem to be sensitive to being touched at times, but the cool pads seem to work well like ice packs but longer lasting.
She may have to have a thin cover like a pillow case over the pad or something thicker depending on your comfort level and chilling level provided. Ice water and ice therapy can be more dangerous than
air chilling so I tend to use these for bad flares and we don't use the ice pads constantly.

Keep in mind cold air of 60 degrees only isolated on your feet will likely not ever cause an EM patient to get frostbite. But if you have an ice pack on your feet and fall asleep, you may get frostbite, so
I really stongly caution against accelerated chilling especially if you're close to sleeping or napping.

AIr conditioner vents in the car if it's a large car will work for your feet if you put your feet on the dash near the AC. Be aware this may only work for a short time, not long term trips unless you monitor it.
My mom has done this a lot put her feet on the air conditioner vents with pillows propping her feet up there for car trips. She did this once for a long time and had her feet chilled and "frozen" and
had a blister that looked like a frostbite blister, which was scary. Because she had her feet on an AC unit for more than an hour which is longer than we normally do this. The foot doctor said, it's not
frostbite, so we dodged a bullet. But it's important to be careful. Just because your foot freezes and is out of pain, doesn't mean you are safe, if you're using accelerated chilling.

I'll post pictures later of these devices. The box is a tupperware like large box, the biggest box that is super light that they sell at a Meijers. These come in Blue, Red and perhaps other colors.
The holes in the chill box were cut using a dremel tool. I put flange connectors on the air conditioner version, but didn't even use those for the portable version. I made the holes slightly undersized so
I could fit the hoses in sideways and they would just fit in the box with a little bit of bending without a flange. Ice being added to a portable chill box tube is a bit of a danger or hazard around electricity
as the fans may be powered by AC, so you have to be aware that the fans are away from the ice and tube when filling the tubes. More ice in the tubes will provide more chilling less ice less and it will all melt
so if you're using the portable one you have to take into account a way to get rid of the water.

There are vent tubes available for "police officers" for their bullet proof vests that can act to cool the officer's vest in a hot day. These hook up to air conditioner vents in a car to push air through a tube.
These tubes might work to funnel cool air to your feet if you don't want the feet to be elevated, but I haven't tried this as my mom's feet need to be elevated and they end up on the dash.

Environmental chilling is half the battle to cope with burning foot syndrome. Pain pills are often not enough. If you ever go to a hospital for any kind of operation and stay there, trust me, the doctors and
staff most likely will be clueless to the needs to chill your feet and will likely be against it because they fear frostbite from cold ice pack therapy. So you will have to come up with a plan and perhaps
even a team of volunteers to chill the foot of the patient. Hopefully you'll be able to go over this with the doctors ahead of time. I knoew we didn't and we suffered greatly from not having a good plan.

Also I want to add thin socks with water on them can be tolerated by some and as the water evaporates the cooling effect can be felt. This used with fans can help and cause longer cooling that just spraying the feet with water.

We spray the feet with water or socks are wetted if socks are used. We use cream and lanocaine. We use a variety of means to chill the feet depending on the need. Unfortunately for mom, her condition is so bad that she is literally in the chilled room with the windshield chair configuration so much, it's like living in an iron lung or something. She never really gets relief enough to be normal and walk around normally as some lucky EM suffers can experience - when their flares decrease. Some EM suffering patients seem to have it much more chronic and severe, like a constant flare that never goes away.

Another interesting thing about her feet, they often act as if they are restless and move on their own without her being aware of them moving. This while she is awake, but not when she's in a deep sleep. I almost wonder if she suffers from a form of "tartive dyskenesia" of the feet, or something equally strange.

My discovery to cool my hot feet is to use an evaporative cooling towel that I found in the camping & sports area at Walmart (Frogg Toggs Chilly Pad cooling towel, 12 x 32”). http://www.froggtoggs.com/cooling/the-chilly-pad.html There are videos on YouTube showing how cool the dampened towel becomes. The Chilly Pad doesn’t need to be snapped to be activated, as the other brand on YouTube does.

I sit down and put both feet on the damp towel on the floor, leaving it as moist as possible, bringing the outside edges over the top of the feet toward the center, tucking it around the inside of each foot, allowing some air space at the toes so that the fan I’ve placed in front of my feet blows on my wrapped feet. I move my feet a bit to find a colder spot from time to time and use a spray bottle of water to remoisten my feet and towel. I have found blessed relief in 10 minutes. This allows me to go back to bed at peace for a few more hours. I’ve discovered that I can keep the flares at bay longer by “icing” my feet just before bedtime.

I also enjoy standing outside my back door on concrete and brick surfaces, barefooted, when I let my dog out at night. It’s a nice treat for my toasty toes!

Tostitoes

Link to Nel's ingenious wine cooler device :)

http://forum.livingwitherythromelalgia.org/forum/topics/six-nights-in-bed-with-a-wine-bottle-cooler

Has anyone tried a donJoy therapeutic ice pad? I used to have a similar one, it hooks up to a ice chest and pumps chilled water through a pad. I am looking at them on eBay they go for about $40 used.

Hi Jon - sparky,

To my knowledge no one has ever mentioned a don joy therapeutic ice pad. Sounds amazing :) Please let us know if you manage to get hold of one - and if it works !

Big hug

This is the unit, but the people that have got over there surgery usually sell them cheap on eBay!
It is also possible to run to wraps off of one cooler, they make a adapter.

http://www.dme-direct.com/media/catalog/product/cache/3/image/9df78eab33525d08d6e5fb8d27136e95/w/r/wrapon-univer_5.jpg

http://www.dme-direct.com/donjoy-iceman-cold-therapy-unit

Oh good question! What I try currently, Is a medium-sized (~13" in diameter) plug in fan that I have on all the time (unless my feet are actually doing well! lol!) and being seated a majority of the time. I'm trying to exercise more - especially with spring break coming up! I got this Neon green battery fan from Home Depot that has chargeable batteries; i STRONGLY recommend this! it's widened the range of what I can do so much! I also recently got this power-scooter thing thats collapsable and light that i love!

Aaanyways, when i have a particularly bad flare-up, I will occasionally cool my feet off with luke-warm water in the shower which helps (but DEFINITELY DONT USE REALLY COLD WATER!! I did that a few years ago and I had a really bad outbreak of blisters all over my feet which I had to be hospitalized for... not worth it). Another thing that I do that helps is just not pushing myself too hard and making them overly cold or hot (easier said than done though :( its a delicate balance). If nothing else, I try to be in a cool room (temperature wise) that gives me an ease of mind.

hope this helped!

~kels

Hi Larsen K.

I too am plugged into fans virtually 24-7. I have a a great battery- operated fan (9") --O2Cool--it's so quiet (can take to a concert or meeting) with 2 speeds--it's made it possible for me to be away from electricity. It takes "D" batteries so it lasts a really long time.

Could you provide a make and model # for the fold-up scooter? I think I may need one as well.

Cheers,


Dragica

FANS-FANS-FANS-FANS

These are the strategies I use to keep my extremities cool:

  • STABLE COOL ENVIRONMENT -- this is the most important--I need 68F or 19C down to 2 degrees cooler, but no more (otherwise causes rebound flares)
  • FANS -- to keep flares at bay (IF room temperature is not too warm this works). I use them almost all of the time. (Any fan by O2Cool--very quiet, good battery-operated ones are a life saver).
  • GEL PACS (from refrigerator NOT freezer) -- when flare is just starting
  • WATER BATH (place feet/hands in plastic baggies and start with tepid water and gradually add cold water until cool, but not really cold) -- used when flare is not responding to fans or cold pacs
  • VISUALIZATION PRACTICE (along with above) -- thinking of cold things--visualizing cool feet
  • TAKE A DRIVE IN CAR with AC -- pretty quickly cools feet that are starting to flare

Hope these help.

Cheers,

Dragica

I like to set the car AC on feet!