Hello. I have EM on my hands. I live in a hot climate and of course it is summer as well. I often have trouble cooking, showering, driving (hot car) and sleeping. Any tips or tricks to make any of these things easier would be greatly appreciated. Does anyone use gloves? I don’ know if it would help.
Hi Akkami.
Those are all such a challenge for me too and I don't live in a hot climate! I will try and give you tips on things I have done to help cope.
I have had to sacrifice some healthier eating to manage but I do what I can do. I eat a lot more frozen food these days and use the microwave a lot more. If I am going to try and cook I do my cooking early in the day before the house gets warmer then just warm up dinner that evening in microwave. Any kind of chopping , prep work that takes standing for a time I gather things up and sit at a table to do my prep work. Bring Fans into the kitchen. I take breaks and ask for help if I can't finish. Sometimes I think I can do it but before I am done I just can't go on and at that point I ask for help and my husband finishes for me. If the oven is causing your home to get too warm and you have someone to help that other person can cook on a grill outside to keep the temp down in the house.
Showering is always difficult. I am disabled and don't go out much but when I have to I make sure to shower the night before because It causes such flaring I can't do anything else afterward. Then when I have to go somewhere I am not starting off already flaring. Try to keep the water temp cool but no too cold. I wish there was a way to make the water feel as if it was the same temp as the air so there would be no change at all because any temperature change can hurt.
Driving.... I put a sun protector up in the windshield to keep the temp down. I turn on my AC in the car about 10 minutes before I have to go and take the FOB off my key ring so I can keep it running and lock it again before I go back in the house while it cools.
Sleeping. Even with my AC on I still have to sleep with a fan on and my feet elevated and I only sleep under a sheet if I can. I use two sheets so my hands can stay out but at a comfortable position by my side not up sticking out. I lay one sheet from my waist down then the other on my top half up to my neck. Then my hands can stay out where the two sheets meet in the middle. I have been meaning to sew something together with openings for my hands and knees to stay out because my hands , feet , knees and face are my worst areas.
I myself wouldn't put gloves on I would think that would just warm them more and make them worse unless they were soaked in cool water I suppose.
Every thing I do is in short increments followed by rest somewhere cool. Chilli pads help when you wrap the burning area in them. I have also thought of making a pair of gloves and booties out of the chilli pad material. I have a lot of things I mean to do! HA! If and when I make theses things I will be sure to post weather they work or not.
I hope some of this may be of help to you.
Take care,
Alina
Thank You Alina. I appreciate the tips.
No problem. I hope some of it helps you.
Hello Akkami, I am truly sorry for all those EMers living in places with very hot temperatures. I know how lucky I am.
It is fascinating how different we all are. My EM is in my feet, a flare will rapidly spread to the tops of my legs, my hands but not my arms, and my face. Elevation doesn’t work for me. I have to elevate so high that I cannot maintain it and the second my arms or legs descend so does the flare return. Lying or sitting propped up in bed will quickly result in a flare. I burn though my feet look fine and the redness then manifests the moment that I put my feet to the floor. Once that has happened I need to walk about on a cold floor until my feet are cold enough to try again. I wear a tee shirt at night and that’s it and no bed covers, not even a light sheet, below my waist, just a thin fleecy piece of material over my shoulders, being careful not to touch my neck or my face will flare - swollen nose, burning ears,sweaty scalp. When it’s cold I sleep under a home-made frame which has the bed covers over the top of it. Fans for hot nights but I have to be careful as I have Raynauds and a Raynauds attack will probably trigger a flare.
As for gloves - the physiotherapist gave me compression gloves at one time and they controlled any swelling but boy were they hot!
Driving I have the air con directed at hands and feet as I am sure we all do. Air con in a car over here in England is quite gentle which suits me fine.
If I have to cook, and I avoid it if I can, or shower or do anything requiring energy, I do it first thing in the morning when I don’t often flare. I can’t sit for any length of time and have to keep moving or the bit of floor under my feet gets too warm. I avoid sunshine too and pull down the blinds as soon as the sun shines on any window.
I don’t think I have suggested anything useful not mentioned by Alina and dkel. I just wanted to emphasize how different we are and what’s good for one is no darn good for another.
best wishes
Hi, I have the most burning in my feet and I ordered the Chilly Towels that you wet and shake and they get cold and I wrap my feet in them. They help a lot. Pulsetvdirect.com. I think thats it, if not let me know and I will get it. They have 3 sizes. I got the mini for my feet. Take care and God Bless!
Hi Akkami ,I would suggest that you look around what Amazon.com has to offer. They have a lot of things for cooling the whole body down (cooling pads in all kinds of sizes) or just for body parts,including hands. They have hand wraps or wrist wraps with a velcro closure that you keep in the freezer, actually meant for people with sport injuries. The hand wraps keep your fingers free from what I have seen. They look like you could cook and drive wearing them. EM in my hands isn't very bad yet, I am doing o.k. without anything during the day but I bought *Mittens* for the evenings/nights when EM increases in pain from Relaxwraps.com - they are real soft to stick your hands in and fall asleep. Good luck
Hi Akkami,
I flare mostly in my feet but when my hands flare aspirin helps me. I get relief within 5 to 10 minutes. If you can take aspirin, give it a try!
Thanks everyone. Great suggestions and links. I really appreciate it.
compression socks help me tremendously - reducing the amount of swelling. I wear 30-40mg when i go to events at night. Jobst brand is what I have found to be the best.
Hi Akkami,
I have tried arthritic gloves and compression gloves. Both help reduce the pressure in your hands but as soon as you take them off you will flare 10xs greater than before you used them. Also, yes, Alina is correct is her assumption that the gloves will get too warm in a matter of minutes. There was absolutely no benefits to either of the gloves.
I also do as Alina does, keep activities limited, keep cool. I have to confess I have used an ice pack on occasion for relief or run cold water over my hands because sometimes I get to my breaking point and need any form of relief. This EM has not been good for my eating habits as well. I tend not to eat because of the pain to prepare fresh food. I have given thought to a caregiver, they do have them (and some insurance plans cover it) to help with housework and cooking, etc. My children will be grown soon and I want them to have their lives and now I have to think of how I am going to get by on my own. Honestly, it's a scary thought.
I very much wish I had good news and tips for you. Oh, a last minute thought, the same theory as with elevating your feet, you can hold your hands-arms above your head for a few minutes. I find myself doing it just to keep the flares from getting worse. I'm really not sure if it helps it could all be in my head because I want it to work.
Best wishes, Kay
Thanks everyone. I ordered some of those gloves that stay cool at night. We'll see how that goes I guess. Elevating my hands does help but sleeping like that can be tough becasue my hands fall asleep in the middel of the night. I appreciate the suggestions.
Hi, this one isn't exactly EM-related but might help those wanting to use a laptop in comfy positions whilst keeping it cool:
http://gizmodo.com/298740/thankos-usb-powered-laptop-fan-stand
I sure could have used one when I had glandular fever and needed to work. Has anyone tried them?
Take care!