I always say that I can cope with anything during the day if I can only get some sleep at night but in Winter I flare within an hour and a quarter of falling asleep and there is nothing for it but to get up, head downstairs to the freezing kitchen and spend a couple of hours or more walking on the cold tiles until the flare subsides. A week ago I remembered that I had bought some gel bottle coolers. I cut off the tops and bottoms, carefully cut the remainder of the bag in two and placed in the freezer. At bedtime I tied the now frozen pieces to my shins with a piece of material between my skin and the frozen bag piece. Feeling a bit foolish I went to bed, no bedclothes on my legs as usual and when I woke in the small hours (I wake between 4 and 6 times every night) I wasn't flaring and went back to sleep. My daughter knew I had stayed in bed all night because the dishwasher still needed emptying in the morning:)
Tonight will be the 7th night in a row if the bag works its magic again. The bags are cheap to buy and widely available in the US, harder to get hold of here in the UK where perhaps they think it doesn't get hot enough for our wine bottles to warm up and they are probably right.
Wow! Than you for sharing this great tip! I hope you get your 7th night and many more. I remember before I started sleeping in the living room with all of the windows open and fans in them bringing in the cold night air I once tried to sleep on the kitchen floor! Needless to say it didn’t work out too well. The floor is much too hard. At least in the winter with what I do I can sleep ok after I get it cold enough. I still need Chillows for the first hour or two. I actually bundle under a light blanket around 4 am when it gets to be about 40 ISH in here.
Thank you again for sharing Nel.
Isn’t it strange the 4 o clock thing. If it after 3.30am actually I will pull up a fleecy sheet and it feels so lovely to be wrapped in something for a couple of hours before the alarm wakes me. Before 3.30 and I will flare, bottle coolers by then as warm as my legs.
That is funny we both get a little better the same time in the morning! I do the same as I think you have said to as far as generally being better upon waking but burning again if I stay in my recliner ( my bed) too long after waking. I can get up and do something them sit back in it for long periods during the day and as long as I keep my house cold ( the same temp it is when I wake around 58) and I don’t burn. You mentioned I think if you stay in bed too long you burn again too. Logic is that it’s the bedding but as I just mentioned I am in a recliner so it can’t be just that. Very strange.
I tend not to stay in bed in the morning but if I do I am alright if I stay flat but if I sit up I will flare. Also when I get out of bed I flare immediately but when that flare has died down I can if careful remain flare free until mid afternoon. Then the madness starts all over again.
Another good night last night. I am feeling like a new old woman:)
Feeling somewhat deflated. One of them leaked last night (I swear it was the bottle cooler) and the second supply I ordered was a different construction and not suitable. The Amazon review had said they weren’t leak proof. Seems I can order them from China but only by the thousand! Thinking cap back on head.
Oh no! That really stinks Nel. Just when you had it figured out. I am sure if you could come up with a solution once you can do it again. You are always coming up with creative ways to keep from burning such as your bed cradle… that almost sounds like you are a baby sleeping in a cradle !
I bought a cooling pad for my dog, we fought each other for it last summer. Guess I will buy another this summer. It’s pretty good size and was was at a pet store, of course can be found online. P.S. my dog comes running when she sees it and plops right down, works like a charm. I have the slipper socks with gel packs too but they don’t stay cold long enough, my flares can warm them right up.
Hello, I live in inland San Diego and it's just cool now at night (maybe low 50's). During the summer it's terrible. After we turn the air conditioner off (my husband won't go for it at night), my room is about 77 degrees! I've been cutting a lidocane patch in half and wrapping over my toes at night. It helps a little. In the summer I use the gel packs from the drug store that physical therapists use and freeze them. I have so many, I could start my own practice! It's hard to keep them on my feet though. My toes seem the worst so I can't put my feet in a normal position and keep this gel pack on my toes. I don't know what I'm going to do this summer. It's been so unseasonably hot here. But, poor Boston, the other extreme.
Hello All, You all seem like your living my life...Flares then good then flares...However the last few months I developed a
system of stepping in the tub when I wake at night and put the cold water on foot for a minute and it works for the rest of the night...Also if I need to step in the tub once or twice a day---done. Oh, feet do have to be outside the blankets...
Thanks all for the discussion and the tip regarding the cooler Nel.
Not sure if they available here down under but certain I could find something similar.
Heading for 36 deg,C on Thursday. As this was my next appointment day I have cancelled. No way I am able to wear shoes in this sort of heat so have made it for the following Monday. This will give a few extra days to obtain Medical Records from NSW and also for me to finalize my file to take with me!
I am learning my way around the site and I wanted to thank John who wrote so do hope he gets to see this. Thank you John and yes it is very frustrating when you are doubted and disbelieved, but despite all that, we/I have to remain positive and keep plugging away. What other alternative is there in truth.
Also computer shutting down on me - not sure why - a nuisance.
If any person does know of Doctors familiar with EM that reside in Australia, any State, I would be most grateful for their names.
I guess it does not matter where we all are, having the Internet is such a blessing, we may be miles apart but then so close - it is a comfort, A few key strokes away and there is somebody you can relate to.
Roll on Autumn weather and temperatures that are bearable,
I discovered them a couple of years ago. They will last 2-3 hours depending on how bad your flare-up is. I get about 2 hours out of doubling up with extra gels. Like jewels, I have so many gels it's crazy! The best ones are the Nordic Ice that food shippers use. They freeze solid, though so I have to use a towel between them and my feet.
I usually have the worst flare-ups at night. My feet can be just fine before bed but within minutes after lying down, they start to flare. Lately I've had to start soaking them for 30 minutes or so, then use the socks. A few hours later, I have to switch those out for a frozen gel pack. I can't remember the last time I got more than a few hours sleep at a time.
I am still getting through the night without a flare. What is puzzling is that before I started the wine bottle cooler therapy [:)] I would wake every night to the flare in my feet. I would be forced from bed, desperate to relieve the burn and the heat would spread right up my leg and it would take hours to cool my legs, even after my feet had turned to blocks of ice. But I don’t apply my iced coolers to my feet. I try to get my feet as cool as possible before I go to bed as I always have done but tying the coolers to my lower leg seems to stop my feet flaring.
LynnV, that is so kind. Can I do some research and get back to you? Whatever the cost it would be cheaper than buying 1000 of them from China. I may find a seller in the US prepared to post to UK. I am using my back up cooler at the moment and treating it with great care.
I am awake most of the night with the burning pain that intolerable at times i go between the cold cloths n ice packs. Recently it has been nearly constant throughout the day n night at this point in time i am scarlet from my toes all the way by my knees any other suggestions what i can try ?
Flip flops at the gym! I’m a gym rat. It takes soooo long 2 getting ready. First I bring 2 ice bags with ice gels & ice for water bottles that already have lots of ice in them. It keeps my body temp cool. Also a hand fan & a ice cold spray bottle to spritz my legs & feet. Of course I drag it all over the gym. And I never forget my UVA umbrella!! Keeps me cooler when I walk from car into stores. Obviously I have a handicap on my car. PS I do wear flip flops at the gym. Best pair schechers memory foam! Hope I was able to help someone.
Hello All, You all seem like your living my life...Flares then good then flares...However the last few months I developed a
system of stepping in the tub when I wake at night and put the cold water on foot for a minute and it works for the rest of the night...Also if I need to step in the tub once or twice a day---done. Oh, feet do have to be outside the blankets...
