I have just been reading about a product called chiliPAD. It is a mattress topper that keeps the body cool in bed. Has anyone tried this product and found it helpful? It sounds good but is expensive and I would be grateful for any advice about this. Many thanks Di
There was another kind of pad called a chill pad of some sort made by an EM suffering person which just had water that evaporated which kept the foot cool but that was a pad that held water and was much more affordable, and home made. I did a quick look up on the device you’re referencing and this device is much more expensive but looks to be interesting and might be worth trying. There are advantages and disadvantages to the approach.
What you’re talking about is a chilling blanket like device with cooling tubes in it. They use garments that are cooling garments that use small fine tubes both in space suits and in nascar clothing to chill down or distribute heat around a suit and keep the wearer more comfortable. People may be in different states of the disease or have different issues.
Some EM suffering patients have types of pain and sensations perhaps early on in the worsening of the syndrome where they can’t even wear socks and may experience a lot of pain from having anything in contact with their feet during a flare, so they may treat their feet very gently and not even be able to stand having a blanket over their feet.
My mom had those issues for perhaps the first 8 or 10 years of her EM. She’s had it since 2002 so we are going on 19 years now. So she often didn’t wear socks and wanted to have really soft fuzzy slippers with a lot of cushioning (not memory foam, which is hard when it’s cold and to dense to be soft for a cold room and patients like mom.) And she had open toed slippers or we cut the ends of the slippers to make them more like open toe slippers and often wore no socks at all. Not even thin socks.
Those people know who they are and having something in contact with their feet during a flare, even thin socks can be a challenge and they may have their feet exposed on the bed, perhaps even on a soft towel or pillow and have fans and air blowing over them. They may use water directly in buckets or small plastic garbage baskets or pans or buckets that can hold cold water and use ice water immersion. Obviously this is for daytime stuff, but water being very cold can be a frostbite threat so doctors often don’t want people to have frostbite threats but that’s a bit off topic. The advantage of water is it can chill and transfer heat 40 times more effective than air, but you must have a interface or means to transmit the heat to the water, so the blanket concept is likely cooling the air under the blanket with convection and acting like a radiator. Maybe it can be away from the feet due to it being a heat sink so the weight of the blanket won’t bother you or it just chills that area. That being said 60 degrees as the lowest temperature is pretty good as a safety measure. It’s cool enough to chill the foot but not damage it from to cold a contact with the foot. It’s probably not even deemed medical device. I wanted to create different options and ways to help my mom who suffers from EM to chill her feet. I thought about chill pad like devices, and astronaut types of boots or something with a sock with hose in it running cold water through it. Even thought about writing NASA to see if they would create something in the name of research but found out some clothing is out there for nascar. Never did try that as mom was against all socks for quite some time. Although she is now able to tolerate socks much more she still uses AC and cold air with small clip on desk fans on the backs of chairs next to her bed blowing air over her feet all night. This means she has four fans and the AC on in the summer and the winter with the room often being 60 degrees.
AIR COOLED CHILL BOX FROM AC or ICE SWAMP COOLER design.
A chill box can also be created a large plastic box with tubes usually 4 inch aluminum vent tubing for driers is a good tube to use and create a chill box out of cardboard taped to the front of a window air conditioner. There is a feed box and a tube that goes to a chill box which can have one or two or three tubes from the AC feed box unit going to a large plastic box which sits on the bed or foot stool and the feet are inside that area which is air conditioned. It will work in rooms that are warmer. One can also use ice and a swamp cooler device with ice in it with air being blown over a swamp cooler, you can simply put the ice inside the tubes and have the water be collected in the tubes as well, but the ice must have air flow from low pressure air through the tubes for this to work and if it melts and you don’t have a catching bucket and holes in the tubes to drain out the water, you can create a water trap that will stop the flow of the air in about an hour or so. So that method the swamp cooler method is more involved with equipment although it could use ice from coolers and low powered fans in a larger camping trailer or RV on the road and have a cool area where you’re feet could be with a low draw on power, as the ice would do the cooling. It would be much cheaper than running a generator when on the road or some AC unit which would be a real challenge for RV. But BACK TO THE CHILLI PAD CONCEPT. There is another couple of ways you can chill you’re feet but some are more dangerous and some caution needs to be applied.
MEDICAL DEVICE THAT IS A CHILL PAD BUT IS OFTEN MORE COLD - only available used on ebay or other sites now .
Sample EB Ice Chill pad on Ebay but this can cause frost bite
One method is to use a device called an EB COOLER which was made by a company as a medical chilling device. This is a full fledged chill pad and can be used for someone feet or back or whatever, but it uses ICE WATER and runs the ice water through a tube system and the pad is a pad that has rubber hoses going to the pad and even a speed and thermostate control. This will really chill you’re feet and can last hours as well. IT will of course cool down an area, but it’s based on contact with you’re feet more as a surface radiator a cold pad. The problem with is is it can get too cold and can be way lower than 60 degrees. It can get so cold that it can cause you to get frostbite or pre-frostbite if you have you’re feet directly on the pad for hours. The CHILLIPAD website I saw on the internet could not cool the feet that low and freeze them and this is actually a good thing for that and makes it safer. Although if you chill you’re feet you may have to warm the other parts of you’re body with long chilling sessions and many with EM know. The EB Cooler was made by a medical company and there were thousands, maybe several thousands of them sold but someone got frostbite in a hospital using one and sued the company and won the lawsuit and they went out of business. There is another cooler device kind of like that but you can still get EB coolers off people on the internet used. I found out about the EB cooler and we tried it as a lady who had back pain and surgery had one and loaned us hers when we were in a bad way stuck in a nursing home place, during 11 days or torture and problems due to an extended hospital stay and a medical nightmare drama scenario I don’t wan to elaborate on. But my mom was stuck in a nursing home under a temporary guardian and the room mate they had in the room had arthritis and was there first and a dear old lady but she needed the heat on and the room was like 90 degrees F in there like a freaking furnace. I had to create a make shift chill box but the swamp cooler thing which worked required ice to be put into the feed tubes every 20 minutes or so. We didn’t have a feed from an AC unit and had to improvise with a swamp cooler device I took into the nursing home. The head nurse at the nursing home gave me high praise and said I should patent it, but I said it was just a swamp cooler and likely was nothing special, but it did work and relieved torture from a horrible short stay during “rehab”. Anyway during that time a nice member of an astronomy club I belong to came by to visit and I told her the challenges we were facing and she being a good Samaritan brought her EB Cooler so we could try it as she didn’t need it for her rehab any more. We ended up buying it off her. But I liked it so much although we don’t use it much I ended up going out on Ebay and buying a couple more used ones just to have backups in case they became scarce and the first one broke down. I could pick them up for about $50. But I think they were like $400 when new. The used ones were fine and worked fine. One can put a light towel or thin cloth over the chilling pad to cool that and reduce the coldness from the pad. The pad can be within a thin towel. The EB pad also had two sides one with the vinyl side which is more like direct access to the chilling action and the other side with a thin layer of insulating like vinyl on it a little less of a thermal heat sink. They still are quite cool and using it with a towel wrapped around it can reduce the threat of cooling. If you have burning foot EM you may find the body is generating a lot of heat and a flare can actually warm up a small heat sink chilling reservoir of cold water or a chilled ice pack. I’ve found in an experiment at home my normal feet can only take about 1/3rd the chilling my mom’s feet can handle. She’s actually like a factory heating machine and can warm up the water. For example in a pan of cold water with six or eight ice cubes and her feet down in the pan of water, she may heat up the water eventually from a 55 or lower water temperature maybe as low as 45 degrees quite cold and colder around the ice cubes as they melt to up to 70 degrees or warmer water, even in a room that is say 60 to 65 degrees. Her flares and foot condition when experiencing flares will warm up the water in the water pan and she will ask for more water or ice cubes, but she doesn’t usually want as many as she used to ask for. So this is her state of a flare.
Mom also used to not want any socks on but now she is used to and like diabetic socks that are thick and give a lot of support and she can tolerate them. She may use or ask us to use a spray bottle with cold water and spray the socks. Her feet are on towels on pillows on a cheap plastic footstool, actually a low stepstool with a pillow taped on it and a towel taped over that. Or a towel lying at the foot of her bed. The towel will keep the water from spraying her feet from getting the mattress wet. She will spray her own feet or ask me to spray them from time to time. But in the daytime she will have a water bath nearby. We also now put foam in the water tray or dish pan we are using for her feet during the day. She likes having soft foam not just water but craves soft foam or thick rugs for her feet. But she won’t always even ask for water now, she may just want a half a dozen ice cubes to be put on the foam and they will dissolve and create cold water and that will perhaps evaporate as well. The coldness and wet foam will chill her feet and she doesn’t ask for a lot of water refills and keep her feet dry. We don’t use a homemade air chill box. I had one in the basement in storage, it may not even be down there, it may be in storage at my storage unit instead. I actually made two of them. I had one for a test but it was to far away from the nursing home so I built a second one after having used the first one as an experiment, but that box saved my mom’s feet from the hell of that place.
If you put water on a pair of socks if you can stand the socks the water of course will get the socks wet and that will chill them and as the water evaporates it will have a chilling effect from evaporative chilling spraying water on the feet also chills them and they stay cooler as it evaporates off the feet. For foot water immersion a little bit of epson salts or a couple tablespoons of Peroxide in the water will help prevent skin infections that might arise from the feet being immersed in the water. But prolonged exposure to water will effect the skins a bit but also might affect the toenails. Although some when they get EM may get it as a result of a fungal infection as well, which was a rare early cause of some cases or was at least reported as such. I don’t know if the fungal infection can cause nerve damage for some, if that is a valid cause for some rare EM conditions. It could also be that people get a fungal infection as a side effect or just on the side when EM was caused by some other thing. Having the feet wet more can cause more fungal growth and sometimes that becomes a concern.
So this is the basics of what we have tried as far as environmental chilling.
Ice water immersion.
Fans and Ac.
Chill Box.
Wet socks.
Spray bottles to spray the socks.
EB chiller
I’ve also used improvised ice packs and cold packs that can be hot or cold packs that you can put in the refrigerator. Using cold ice from an ice machine in a bag of water or a sealed baggie can be a mess. Crushed ice from a hospital cafeteria was used in plastic bags as improvised ice bags for my moms feet while in a hospital stay.
A BIT OF A DIGRESSION HERE - you may want to skip this section this is about hospital stays. . . and trying to plan for those long stays, which may be a challenge.
That stay back in 2014 was a real challenge and nightmare, because our MD didn’t write up chill instructions for any staff for mom’s foot condition and our family had to stay with her 24 hours a day in shifts to do the chilling of her feet and we had only one fan and ice packs to keep her feet chilled during other hospital procedures. Trying to keep a hospital room cold, although they like cold rooms in hospitals to keep germs down, is difficult and getting permission for fans and ice bags or taking in an EB ice cooler device or something is a nightmare for the family because hospitals and the average medical doctor won’t want to chill the feet environmentally nor write orders for it. They are afraid of frostbite. And if you’re going in for a procedure and are there for a long time for a procedure or operation, you will find it’s an extreme challenge for you’re care givers to keep the feet chilled and advocate for the feet and their strange EM needs. The staff of nurses will shift from one nurse and other medical assistants to another and there will be maybe 40 or more people over a long stay that will be you’re nurse or their helper and you’ll be faced with educating all of them and having them look at you and wonder if you are nuts. It’s not that we are nuts, it’s just that this foot condition is nuts and a nutty condition to try to cope with and live with. Most will get it. Some will not. If you are planning on going into a long hospital stay, it’s almost a necessity that you have six helpers or family members to be in shifts as bedside advocates for you’re feet. That if you have extreme problems with EM and flares. And some of the stuff the hospitals want to do for the normal patient may cause drug induced pain flares. blood thinners for example or even potassium. Medication changes away from burning foot pain and nerve medications off label will perhaps be removed during a hospital stay. Those may be challenges to the patient as well. The necessary planning necessary before a planned hospital stay has to be figured out before hand if you want to avoid a massive nightmare in the hospital stay. Best thing to do is avoid them as much as possible.
Thank you for such a comprehensive reply. I will look into your recommendations. Many thanks.
Yes! I bought mine about 6 weeks ago and have loved it! I live in a dorm room at university with no central A/C (it’s in New England) and a strict rule against students bringing their own air conditioners, so I was kind of at a loss with my primary EM. I was having to soak my feet in cool water a few times a night to be able to sleep. I can’t speak to how much it would help if your space was already air conditioned, but I do feel like it helped me in my somewhat unique situation. They have a 90 day money-back guarantee, so my logic was I can always send it back for a refund if it doesn’t work for me. So far, it’s been great. It didn’t solve my EM or anything, obviously, but when A/C wasn’t available it was a pretty decent substitute (and it did keep my bed cold!).
Thank you. I also decided to try one because the company has a 90 day returns policy. It really does work and cools the bed very well, however part of my problem is that although my feet and legs can be burning my body can feel very cold. The chiliPAD cools the whole bed (very efficiently) but I was finding it was just as difficult to sleep even though my feet and legs were more comfortable. Sadly I had to return it. Living in the UK I would probably only be able use it for a couple of months each year. I wish they would make a small version that would just cool my feet and legs. Happily, the company has excellent customer service and accepted my return request. So pleased it has helped you and hope that it continues to make your life a little easier.
This is a rather late reply. But you can still probably find something like an EB cooler on the internet. Make sure it has a functioning chill pad portion although you still may be able to buy aftermarket pads that will work with the devices. They are only about $50 or were when I wrote the earlier post and the ones I bought off Ebay all worked well.
You have mentioned an very obvious thing to those who suffer from EM but others who never saw the disease might be baffled by it. The flare is localized to the feet or hands or (hopefully not for most but for some the nose face or even ears and scalp). Obviously if it’s in the feet well that’s actually easier to cool in a localized manner. One of the biggest problems for my mom is she does need her feet chilled often most of the day and night, but the rest of her body is just a normal as my body and her health for her version of the syndrome is just as healthy as anyone else’s body, maybe even more resilient than many. This being the case the rest of her body doesn’t want to be cooled like her feet. So we have at times done creative things to cool only her feet, but I can tell you the rest of her body is often wrapped up and kept warm often with blankets and there are often fans blowing cold AC air from our house AC window air conditioners over her feet. Small fans with CLAMPS that can be clamped to chairs like kitchen chairs are in her bedroom and four small fans blow cool air over her feet all night. What is wild of course is her feet are exposed well at first they were but sometimes they have wet socks on them which further cool when the air bows over them. The wrapping up of the rest of her body to keep the rest of her body warm is a concern and she knows how much to wrap up with. So she’s literally wearing flannel pajamas all the time with a undershirt below them and often a bra as well. And she will wear a winter hat and have long sleeves on to keep her body warm and have a variety of blankets she may use often small ones. And maybe wrap a blanket like a baby blanket around her legs upper legs down to her knees and tape the blanket around the legs near the knees. Perhaps even put a washcloth in between her knees and tape the entire blanket setup around her legs with masking tape. It’s quite an ordeal and sometimes she claims the tight wrapping of the tape helps reduce the blood flow with a tourniquet like wrapping of the blankets around her feet. So she is literally layering and binding her feet up and her room is ideally 58 to 60 degrees with cold fans blowing over her feet. Now my dad used to constanly sleep in the same bed but not he retreated to another room to avoid the long waking times she has with bed pan activities etc. Which is another challenge. So he stays away from her because she will be up all hours of the night and maybe get 3 hours sleep max per night and want help the rest of the time. How can an older senior who is much older than my mom 14 years older cope with that challenge? The answer is he can’t so he had to find a space to sleep elsewhere. So she is wrapping herself as needed to stay warm. Some may use something like a short summer rated sleeping bag to sleep inside it to stay warm and have their feet chilled in the room. Chilling the entire room seems like a waste of energy and money and it is, believe me. But one thing which my dad said earlier on which made some sense is if the entire room is being chilled it often won’t be chilled much below 60 F because modern AC units won’t push out chilled air below that. The larger volume of a room being chilled means the air will be cold longer in case of a power outage and a small battery backup unit or small generator may run fans while the AC is out and you may be able to use ICE or swamp coolers if you are in an area with a lot of power outages. I’d highly suggest a backup generator for at least part of the house in the summer in case you have a power outage, because the pain of hell may be waiting for you’re feet and you will be at the mercy of some mild or extraordinary use of ice packs. We live in Michigan and there was a 3 day power outage one day some years back maybe a decade ago and our Backup generator was small and acting up and all the generators at the stores were bought out by people. So we were searching for ice as we didn’t have a freezer and stored reserves of ice as a different backup. So we survived with ice packs and somewhat moderate outside temps helped a bit. But we depended on ice bags and fortunately for us my dad was able to talk to someone as a local Meijers store and the manager got a few bags of ice and sold them to my father due to the medical condition while other customers could not get ice for their normal party needs or whatever. So we were fortunate to go through that. I guess we could have used car air conditioners if we had the range of a car and chilled her feet with the AC of the car on a long trip to a place where they might have AC but most of our state was out of power for 3 days when a grid failure cascade happened that affected most of the east coast of the USA and part of Canada. You knew who the “smart survivalists were” but also found many gas stations closed because they didn’t have sufficient generator power to run the entire gas station. My overall point is chilling is a special thing sought and required by those who suffer from more demanding forms of EM which have more flares and more of a chronic severe condition. Our AC units run most of the year both day and night. And warming up of the patient is as much of an issue as chilling the feet. If the entire room is chilled it costs more money. And ironically in my case, I damaged the nerves in my ears when I was in my middle ages, by using Q-tips and digging out ear wax to much. And my ears experienced several ear infections and it was a bad habit I developed and they were from scrathes in the ears from the Q-Tips. So I had a bunch of ear infections. And I was taking anti-biotics with an ear specialist every time to resolve them. Then one day I went in and he looked and told me, I’m sorry you don’t have an ear infection. But my ears were hurting. He said you have damaged your nerves in your ears from the many infections and now you will get Pseudo ear infection pain from the nerves. Get this Ear Infection pain, without the infection, from COLD AIR or cool air blowing over the ear and into the ear. Which means even going in a car with the windows down on a normal day can make my ears ache. So I need to put cotton or even rolled up tissue paper wads in my ears in cold environments to stop ear pain. And so my particular problem is MY MOM wants cool environments and breezes for her feet, but that same environment gives me a severe ear ache so that isolates me from her at times unless I make sure my ears are protected. Such is the problems with EM. The environmental chilling setups can cause more delay and work. And to the average person it can seem crazy and it is, it’s crazy as compensation problems to avoid pain, but that is due to a real need of the patient. And some people are unwilling or to close minded to understand the special needs and pains of others. So those people are immature. And I would further say in my case, I have NO TIME nor desire to go over some explanation and try to prove what is going on to those who doubt what is really happening. Because obviously elderly people can have issues and can have even mental health problems and the coping and isolation can be troublesome. Just because you develop strange home made compensation behaviors to avoid pain doesn’t mean you are mentally ill. But some will want to go there and start saying things like that’s crazy and they have dementia or they are seeking attention, etc. The patient may even have mental health problems, but that doesn’t mean their physical ailments should be ignored. I won’t shoot someone in the head if they have a broken arm but are suffering from a mental health issue, but some want to group anything that is hard that a patient deals with in some basket to dismiss them and of course avoid them maybe out of fear that they have some disease that is “contagious” as well. So isolation is a part of this syndrome if you have a really advanced and difficult version. Sorry for some extra problems I’ve described. Many have a mild form and get some relief and are not as bad as our case and some have even more health issues. So I hope this added information helps some.
Yes people with EM can have localized flares and will require localized chilling. Or the warming of other parts of their body.
Thank you for all this information.