Hey everyone! First time posting so I hope I’ve done it correctly. I’m shannen I’m 26 and a few months ago I was finally diagnosed with EM. The summer is here and I’m finding my flares unbearable, especially at night. I’ve woken up multiple times with my feet and legs up to my knees burning. I’m hoping maybe someone has tips for sleeping in this heat, bedding,
Cooling pads etc. What have you tried and what works best for you? I’m aware what works for some won’t for others, but I’m willing to try it all.
Try to sleep with at least some covers and avoid fans while sleeping, the rebound flares from the cold fans and cooling pads to the hot weather will make you further inactive when you rebound when going outside. When it comes to outdoor activities, Birkenstocks are wonderful. They’re open, have good arch support, and go well with everything. Do what you can, don’t stress about the rest but definitely try to get outside when you can, it’s great for mental health.
I’m only months new to this but at first I was using room temp foot soaks and cold water cloths, I’ve since found that fans are the best way to remove the heat from the feet (with elevation), but it is difficult to sleep as yet. We’ve always kept the house cold so I have that going for me. Haven’t been able to sleep with covers on my feet for weeks, that’s probably the toughest thing to get used to as far as sleeping. But the fan has been the key difference maker for flareups for me.
I also put a fan on low, few covers and open window. I have been taking 10 mgof amitriptyline nightly and 0.1mg ofClonidine when I feel a flare coming on.it has really helped, now [quote=“Shannmaria, post:1, topic:5571, full:true”]
Hey everyone! First time posting so I hope I’ve done it correctly. I’m shannen I’m 26 and a few months ago I was finally diagnosed with EM. The summer is here and I’m finding my flares unbearable, especially at night. I’ve woken up multiple times with my feet and legs up to my knees burning. I’m hoping maybe someone has tips for sleeping in this heat, bedding,
Cooling pads etc. What have you tried and what works best for you? I’m aware what works for some won’t for others, but I’m willing to try it all.
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I only have burning hands, the foot problem has disappeared. I know the misery of not sleeping and intense burning though but am now able to sleep thru the nights. My doctor and I kept researching and trying different meds until I got the right ones. Good luck to you
Hi I take one aspirin a night and that seems to help , simple but effective was already on lyrica and fluoxetine but aspirin helps a lot. Hope this helps.
Does elevation work you? For my hands, i propped them up on little pillows on either side of me so they were just above my heart, it would help a lot when I went to sleep…
How high is the pillow? I reversed how slept, and had my feet up 50 degrees at night, over the headboard, and that extra height really helped. I’ve come down since then, but that did help to sleep.
It’s above heart level when I lay down. Maybe not High enough, because I do find laying with my feet high up against the wall helps allot more during the day if I flare, but it’s not a position I could sleep in as I tend to roll over. EM is enough of a burden without an added injury. lol
Hi there…I was diagnosed a year ago August. Thank God for this site…it helped me and prepared me. Aspirin has helped me so much to start….and a year later…I’m still on it. Then I went through other meds ….because not one drug fits all….and that was difficult. I am taking Elavil now…and even though I still get flares( weather/ stress/ activities) …I’m sticking to this med. Cool wash cloths and keeping your feet and legs elevated truly helps. You will get through this. One day at a time.
