Hello!
I had to start using a fan all night on my feet this summer which helped a lot. I live somewhere in the Pacific Northwest in the US and it cools down quite well in the summer evenings so I was able to open my windows at night and with my fan on my feet did well. But, now it’s very cold at night and into the low 30s. I keep my bedroom at around 61 degrees. Sometimes it gets to 62 degrees. If I let it get any warmer then my hands and face will flare. I still need a fan on my feet all night. My problem is that I sleep on my side with a body pillow due to trouble with my lower back. The cold air is good on my feet except for wind burn but it creeps up my legs and all up into my covers. I’m fighting it several times a night to try to keep the air out because I get very cold & can’t sleep. My husband has tried to help me by building something over my bed to put the fan on top so the air is coming directly down over my feet but it still doesn’t work. We’re trying to come up with another idea. Do any of you have the same problem and have found something that works? Also, just for information, my husband & I don’t sleep in the same bed or room. So, anything that works would not bother him. Please help!
Thank you!
Miss Patti
Hi!
I wanted to try to help you. I live in the US in NYC. I need to keep my bedroom at about 62 also. I use an A/C in fan only but as for the fan- this is what I have done. I too have to have a fan blowing on my feet all night -my EM is in my feet (toes and soles) and lower legs. So I have a large standing fan from a company called Vornado. It has 5 speeds. I put it on the opposite side of the room above the head of my bed and I let it blow across the room angled at my feet and lower legs. So it doesn’t blow against any other part of my body. I have to leave feet and legs uncovered. I pull up the legs of my PJs and e pose them but then I have throw blankets which I use on the top part of my body. I don’t get into the bed anymore I sleep on top with blankets- actually I use a fleece throw and I just wrap it around the top of my body - hips up to my shoulders.
Do you understand this description? I hope I explained it clearly. This way the wind from the fan doesn’t get under anything that you are trying to use to cover the rest of you to stay warm.
I wish you all the best.
Jordy
Hi Jordy!
Thank you so much for your reply. It sounds like you have it set up nice. It sounds like a good idea! I’m going to try something like that. Thanks, again!
Miss Patti
Hi
At night I take large square cold packs rapped in pillow cases and put flat on the bed where my feet are and keep them on all night it works I have to make sure the feet are really cold before going to sleep . I also have burning in all,of my body worse at night so I use the cold packs on some parts of the body to help sometimes I make myself so cold o get the chills happens a lot .
Hope this helps I also sleep on my own because of this .
Hi Patti,
Check out the wearable sleeping bag called a Selk Bag. I have one that I bought on Amazon with zip off feet. I also wear some calf warmers I made out of old jacket sleeves. I cut the sleeves off of a fleece jacket and an old leather jacket from the thrift store. Sometimes when I am getting dressed for bed I just think ‘this is ridiculous, how has my life come to this’…but hey, best not to go there! At least I have found a way to keep my feet cool and body warm. I live in Minnesota and I keep the window cracked open all winter. I hope this helps. The burning feet are bad enough, you don’t need to be cold all night on top of it!
Hi flame,
Thank you for your response! That sounds like a good idea. The only thing I have found with cold packs is that they don’t last very long & then I will get hotter due to being next to plastic that isn’t cold. Do you have that problem or have you found cold packs that are different? Thanks for your help!
Miss Patti
Flame said:
Hi
At night I take large square cold packs rapped in pillow cases and put flat on the bed where my feet are and keep them on all night it works I have to make sure the feet are really cold before going to sleep . I also have burning in all,of my body worse at night so I use the cold packs on some parts of the body to help sometimes I make myself so cold o get the chills happens a lot .
Hope this helps I also sleep on my own because of this .
Hi Liz,
Thank you for your response! Wow! I’ve never heard of the Selk bag. I will check it out on Amazon. But, that’s a clever idea that you came up with about the jacket sleeves! I think I’m going to try that, too. It’s a real bummer about what we all have to do at night just to get some sleep! I keep a window cracked at night, also but it’s just not enough for my feet. I have to have the fan on them all night…sometimes I wonder if it’s because my feet are accustomed to it now. I don’t know how I would be able to stop it. Anyway, I appreciate your help!
Liz Sheppard said:
Hi Patti,
Check out the wearable sleeping bag called a Selk Bag. I have one that I bought on Amazon with zip off feet. I also wear some calf warmers I made out of old jacket sleeves. I cut the sleeves off of a fleece jacket and an old leather jacket from the thrift store. Sometimes when I am getting dressed for bed I just think ‘this is ridiculous, how has my life come to this’…but hey, best not to go there! At least I have found a way to keep my feet cool and body warm. I live in Minnesota and I keep the window cracked open all winter. I hope this helps. The burning feet are bad enough, you don’t need to be cold all night on top of it!
Hi I take a few of the pack to bed some are really frozen
I case I need them during the night wrap pillow cases or tea towels so the plastic does not touch our skin good luck
Miss Patti said:
Hi flame,
Thank you for your response! That sounds like a good idea. The only thing I have found with cold packs is that they don’t last very long & then I will get hotter due to being next to plastic that isn’t cold. Do you have that problem or have you found cold packs that are different? Thanks for your help!
Miss Patti
Flame said:Hi
At night I take large square cold packs rapped in pillow cases and put flat on the bed where my feet are and keep them on all night it works I have to make sure the feet are really cold before going to sleep . I also have burning in all,of my body worse at night so I use the cold packs on some parts of the body to help sometimes I make myself so cold o get the chills happens a lot .
Hope this helps I also sleep on my own because of this .
Swamp cooler based portable chill box deployed in nursing home. See details below. But we don't use this at home although with enough space a chill box would be a good option for some attached to a room AC. Have three tubes, one return tube going to a cardboard enclosed feet box that fits over the front of the AC unit. That would allow air flow and temperature control to be controlled from the AC unit and have a relatively sealed system. Blankets can cover the top of the opening of your plastic chill box and keep the area where the feet are relatively cool. An EB ICE cooler can be also used and the cooler pad can be inside the box. The EB ICE chill pad uses water flowing through it for contact cooling.
My mom wraps herself in a kind of mummy like cocoon. She wraps her legs with towels or small blankets, or sometimes just wraps them with the warm flannel PJ's. Sometimes she will tape a towel or towels with tape around her legs to prevent air from flowing up the legs. Also she may tape her legs together in towels to immobilize movement a bit, in case they shake or move while she is sleeping and could cause her to wake up from a restless movement. This prevents the air from fans from flowing up and she wraps one or more than one blanket around the calf of her leg and is covered with a blanket and even a thin white bedsheet (as if she is dead). A thin sheet covers her face.
The wrapping procedure can take quite a bit of time, but she seems to have plenty of time. The best thing we could do would be to have a bed that is adjustable and allows her to sit up in bed and raise her feet, that hasn't happened yet. She also has a windshield we created for the front cold living room. That acts as a shield and she has a side shield as well to keep cold air from chilling her upper body which is also warmed with heating pads as well which are covered by towels. So we warm her body but chill her feet. It takes her 3 hours to get out and go back into the chair with the windshield setup if she goes to the bathroom from the setup in the living room. It might be as fast as 30 to 45 minutes, but the routine can often take three hours, which is ridiculous by any standard. Imagine spending 9 hours of your day for restroom breaks. Obviously it's better to have faster ways to wrap up, and it's also better if you can safely cool your feet in a "chill box" which is more energy efficient and allows others to be in the room while you are in a more normal room environment. I have bad nerves in my ears that ache in cold air and with cold air blowing in the room, it causes my ears to ache, to be around my mom. So the chilling of the air and entire room can make socialization with the person with EM more difficult.
She has a set of tubes to supply air, and uses a thin sheet which covers her face at night. My father sleeps in the same bed, but sleeps in a sleeping bag. He actually doesn't zip it up and his feet have socks on them and his feet are actually out of his sleeping bag exposed to the cold 60 degree room. Four small fans blow cold air over my mother's feet. She has sand bag like warmers that can be warmed up in a microwave and we warm up a pair of them each night. She also at times has "hot packs" that can be reactivated and use exothermic heat. This are activated by snapping a small metal disk inside the pack. The hot packs have a salt and vinegar water solution in them. They are boiled in water to prepare them at night. My mom fights the heat in her feet with cold room air, but has to fight the cold air to keep the rest of her body warm. HotZ reusable hand warmers are the brand we have used. We use the small round orange ones and the small green square hand warmers. It takes some time to prepare them in boiling water on a stove, so we have about a dozen of them and she may use one or two per night to ward off the cold under her blankets in bed.
When she is not in a room that is chilled down to the better 58 to 60 degree temperature, she will use ice water in a container on the floor. When her feet are not elevated in a cold room she will use ice water or cold water immersion and at times remove her feet and have them on a foot stool. This gives some chilling relief. For ice water immersion she will often have Epson salts in the water to avoid skin issues from long immersion.
There are other ways to chill the feet as well. We use cold ice packs. We also have used in the past an EB ice cooler, which was used in a nursing home actually for a couple of days and I created a "chill box" to chill her feet in a nursing home. The EB ICE cooler is available "used" on the internet. It uses an ice water pump that flows to a pad that has water flowing in and out of the pad. The pad will cool anything that touches it. The EB ICE cooler was made by a company that was sued however and went out of business. Someone got frostbite and had major foot damage from it and won something like 17 million bucks which got rid of that solution. The "chill box" is a large box, a large plastic container that has four inch aluminum vent dryer pipe attached to it. Ideally one could create a box that attached to an air conditioner and have a feet to the box and from the box go back to the box on the air conditioner. This would allow the circulation of cold air to cool the feet when they are in the large plastic box. A pillow would rest in the box and your feet would be on the pillow. A thin blanket or towel could be draped over the opening of the box to keep the cold air inside the box.
This would allow the chilling of the feet alone while sleeping or sitting in a room, which is more energy efficient. Fears of over chilling the feet however could be one drawback to chilling a small area. Think of the box as a kind of design that they would use to heat newborn babies who are born prematurely, but it would be a box for your feet.
I have created two test boxes and never used the one that would hook up to the window AC unit at home. Because it takes up to much space and I had resistance from my parents in using it. I created a "portable" version of the box using the same 4 inch tubes and had holes in the bottom of the tubes to allow water to flow out into two buckets one for each side tube. The tubes would be filled with a handful of ice and they would have ice cubes in the tubes. The ice would melt and be in the bottom of the tubes. The tubes were elevated (i used a salad drainer in a bucket to have the tubes elevated above the bottom of the bucket they were drooped down into. The tubes were like a U attached to the sides of the box and to a couple of chairs where the air was flowing into the box via two fans blowing into the tubes. Put some ice in the tubes, maybe a handful and they would cool the feet for maybe 30 minutes. This of course worked better than ice packs at the time in the nursing home because our room temperature in the nursing home was 88 to 92 degrees, HELL on earth there. The box worked as a kind of swamp cooler, but had some design flaws in it which might have to be addressed for a portable one. First there was a limit on how much ice you could put into it, because the ice would melt and form a kind of block to the air flow. A water dam like block, like your plumbing pipes have. Second you can add ice by hand, for the ice version of this which is more portable, but the ice melts and you have to drain the buckets and there is a limit to the amount of ice you could have for a portable chilling box. The EB Ice Cooler in contrast will last about 4 hours before you have to refill it, with direct cooling via ice water. I think a better system would have a different cooler design instead of a tube. The design would use ice trays from a refrigerator and the trays would hold the ice cubes intact in the ice trays and be attached to the box or the tubes as a kind of box which would allow air to flow over the ice trays but melted ice would stay in the trays of ice. This would allow less fuss and no need to empty the water, because the ice cubes would just turn to water and could be returned to the ice box to refreeze.
The portable chill box that is a swamp cooler is better for low energy and portable use, but the box is large. It would work well for example in a RV when traveling because the fans to run the unit take a little bit of power to move air through the tubes to the chill box. The A/C version would be better for long term use at home, because you have a Window AC unit available. An RV version might work with air hoses flowing to the box from the AC vents of the vehicle as well, but you'd have to make an adapter.
Hope these ideas help a little bit. I'm attaching an image of the chill box in the nursing home if I can find it here.
Here is the wild setup that evolved over time in the living room.
Shields are used to block the wind. Mom even uses towels wrapped up to keep some of the cold air off the lower legs so most of the direct air that is cold blows on her feet. The windshield allows her to watch TV and she uses an Ipad mini to watch movies as well for entertainment distractions.
21-IMG_2294toPost.jpg (546 KB)
Wow! Thank you so much for sharing all this information. Up until now, I had planned on throwing myself off a bridge if I reached the point of needing to be in a nursing home. No joke. Those places really are hotter than hell!
I will be looking at integrating you cooling boxes into my own “sleep system”.
Do take a look at the Selk Bags (mentioned in earlier post) for you mom. Or maybe for your dad in that cold bedroom!
Miss Patti, I had the same problem trying to sleep. I sleep with a pair of light pants on that are cinched at the ankle plus an “upside down sock” over top of the pants. Let me explain…I bought a pair of the fuzzy, warm higher socks at the Dollar Tree for a buck, cut the tip of toe off n put it on upside down so that the stretchy elastic end is down by my ankle n the end I cut is pulled up my shin. Sometimes I just want the tips of my toes out n other times I have my entire foot out. Either way, it keeps my legs warm from the draft of the pedistal fan I use every night. I hope u can understand how I did it n that it helps.
Watchman, thank you so much for your awesome reply! When I saw the picture of your mom my heart broke for her. I also have the flaring & burning 24/7 of my feet. I’ve had it for 16 years. It wasn’t always that way. Just every year my feet would progressively get worse. My feet are a little different because they also swell. My right foot is worse than my left foot & it’s coming up my legs. Also…though…I have begun to flare on my chest, up my neck, my face, ears, & whole head. So, I have to be careful about getting covers up too close to my face. Also, my hands have been flaring as long as my feet so I have to be careful to keep them cool. Mostly, I have to stay cold all the time which is hard but otherwise my hands, face etc. will start. But, your cooler for the feet is a great idea. In fact, my husband had come up with an idea very similar to it. Now showing him your picture he knows what more to do. I’ve always wondered what I would do if I ended up in the hospital…now I know there’s help! My husband was in the hospital 2 times last year & it was a horrible experience for me to go & visit him because it was too hot for me. May I ask how old your mother is? Has she tried any prescriptions or supplements to try to get help? I went on the website called MedicationSense.com that Dr Cohen has. He has EM himself. He has listed a lot of things to try. My doctor agreed to help me using Dr Cohen’s list. So, I’m hoping I might find some relief. I’m on magnesium right now. I can no longer walk anywhere anymore so I have a powered scooter. I’m 63 yrs old. You are a good son to your mother. Thank you again, for your input & ideas.
Hi Kimberly, Thank you for your reply! The socks are a great idea. I’m going to try it. I understand how you explained it. Thanks, again!
Kimberly said:
Miss Patti, I had the same problem trying to sleep. I sleep with a pair of light pants on that are cinched at the ankle plus an “upside down sock” over top of the pants. Let me explain…I bought a pair of the fuzzy, warm higher socks at the Dollar Tree for a buck, cut the tip of toe off n put it on upside down so that the stretchy elastic end is down by my ankle n the end I cut is pulled up my shin. Sometimes I just want the tips of my toes out n other times I have my entire foot out. Either way, it keeps my legs warm from the draft of the pedistal fan I use every night. I hope u can understand how I did it n that it helps.
Sorry about the slow reply in this thread.
My mom is 76 years old.
My father is 91.
When a couple is in their older years, you'd expect that the younger mate would be helping the older mate, but in our case EM saddled my father with a huge work load. He has basically had the energy and capability to work like a man 20 years younger. A lot of people from the WW2 generation are able to work hard on tasks, perhaps a trait of the "greatest generation". For a long time many would say my father seems a lot younger than his actual age. But about 2 years ago, his health went down hill with his own health problem (something that was like Pseudo Gout, but wasn't that actually) and he was almost out of action as much as mom until he had a "full" recovery. Now he moves around a lot and has less energy reserve a lot more like others who are his age. It was like he aged from a typical 70 year old to a 90 year old overnight. I'm 54. I live at home with them and help them out. I took an early retirement and one of the big reasons was to help them out more because of my father's advanced age and my mom needing so much help.
Liz Sheppard said:
Wow! Thank you so much for sharing all this information. Up until now, I had planned on throwing myself off a bridge if I reached the point of needing to be in a nursing home. No joke. Those places really are hotter than hell!
I will be looking at integrating you cooling boxes into my own "sleep system".
Do take a look at the Selk Bags (mentioned in earlier post) for you mom. Or maybe for your dad in that cold bedroom!
Hi Miss_Patti, I have brought two nail polish dryers, and use them for my feet. Work wonders. I spray my feet with water mist then put my feet in under the fans. Brilliant outcome.
Hi MultiRus, Thank you so much for your reply! That DOES sound like a brilliant idea that I may have to try. 
I used to have great success using a fan at night unfortunately now it doesn’t help. I have had one leg amputated so that one isn’t a problem not, but the other is bandaged and so the cooling fan doesn’t get to it.
I am so sorry about your leg can I ask why you had it amputated . I have heard of some people doing that because the EM was so bad .
The reason it was amputated is that I so many ulcers on my foot and leg that were getting worse. They said if they didn’t do it I would become seriously ill. I have them on my other leg, but thankfully they are improving.
I have recently been diagnosed has having rheumatoid vasculitis which will be the cause of my EM as well. The good thing is I have no pain in the remainder of my leg, but I wouldn’t suggest it as a way of getting pain relief.