This is a question of general curiosity that has not been answered for me by the scientific literature. I know that the frequency of flares for people can range from only a few flares a month to being in constant flare. So, in your day-to-day life, doing what you normally do to manage your EM, how often do you flare?
I'll start: I flare in my feet, knees, hands, and/or face anywhere from 6-10 times per day, mostly in the afternoon and evening.
If I stay in an environment of 74 degrees or less AND keep my stress down, I have very few flares except for the shower. But if the temp is over 74, my feet will always flare and sometimes my hands. When I go grocery shopping, I almost always have to take off my shoes after a period of time. I can be in Wal Mart in a coat and walking around in my stocking feet!
Taking a hot shower or bath is miserable. 99% of my body just loves it except for my feet and hands. I have fibromyalgia so the hot shower feels good to everything except the feet and hands. I have to lay down in front of a fan after a hot shower to cool my feet off. Maybe I need to stand in a bucket of cold water. Might buy me some time on the feet....
I made the mistake of having a cocktail while out to dinner last week. Oh my, my feet and hands flared for 3 days. Up until then, my hands never really flared. I've only been diagnosed for < 2months, so alcohol is definitely off my list!
Mines are a constant! I don’t really get flares my EM is there in some form for 23hrs a day. My EM is only a constant in my feet but I get at least once daily hand flares that can effect both or just the one really depends on what hand can be bothered!
I also get along with my feet, up to knee flares but never thigh. I get ear and face flaring too also my eyes and middle of my back as well.
Twinklee nooo!! Cold water in buckets is a big no-no!! Can cause so much damage. I hands up admit if my feet becomes unbearable which i mostly cope with but if one time I can’t, I se a bucket of cold water for roughly 5min and then put my feet under the fan.
I use a desk fan, place it on the floor next to my feet (left side seems more effective!) and put it up full notch. Fans are safe and ok but cold water - for us - can cause extreme dry, cracked skin and also nerve damage.
I had to completely give up drinking alcohol of any kind. It makes my feet flare even after just a few sips.
MsKim said:
I made the mistake of having a cocktail while out to dinner last week. Oh my, my feet and hands flared for 3 days. Up until then, my hands never really flared. I've only been diagnosed for < 2months, so alcohol is definitely off my list!
I flare in my feet every evening/night without fail. Usually one foot at a time but sometimes, like tonight, both feet. Flares last around 9 hours and begin from about 5pm onwards as a rule.
Warm weather, having to wear flip flops or sandals to go out, or sitting with feet up causes flaring too.
I just started getting symptoms this winter, so I don't know yet what my norm will be. This will be my first spring/summer ... and the past weekend of 80+ temps was really disheartening and frustrating. I'm the outdoorsy, active sort... so I'm really hoping to find ways to treat and control this now that I have a diagnosis.
So far... my flaring depends on the temperature and level of cardio exertion.
Hot baths always trigger if I submerge my hands and feet.
Showers are less predictable.
Hard cardio in 50+ degrees = flaring.
Walking in flip flops in 70+ degrees = flaring.
Rock climbing in 70+ temps = flaring.
Sleeping (I get hot after I fall asleep, think soaking nightsweats) in 65+ degrees = flaring/insomnia.
My flaring tends to clear up pretty quickly if I stop the cardio/exertion or escape the heat.
I have only had this a few months too and it has drastically changed the way I am able to do exercise and work outside for very long. I'm still just trying to work for 2-3 hrs, then rest for an hr, then get at it again.
Hi, I have a question for everyone out there. I don't have an actual diagnosis except for my own personal belief that I have this condition, and the opinion of a cousin who has it and is a dr. My question is basically, what do you consider a flare? For example, I live in west Texas region and while I am not sure how hot it got today, I think it was in the low 90s. I was outside in the shade getting a few things done in the yard but I got so hot (as usual) I thought heat stroke was not out of the question. I have been inside under an evap fan, with the ac turned down to about 65º, and my hands, feet, and face still feel as though they have been burned wiith a curling iron or something. Would this be a flare? I don't mean to sound dumb but I have been dealing with this "hot hands and hot feet" thing since I was about 8 years old. It has gotten much worse, and is occasionally almost disabling, but it is something I have pretty much every day, especially after activities, exposure to heat, or at bedtime.
Early on, my flares would start as a tingling sensation or "buzzing" in my feet. Now it just gets hot and sore off & on throughout the day. When it gets too intense, I stop and rest until it goes away. I am new to this and still learning as it evolves.
Linda, what you're describing sounds flare-like. For me, flares in my feet start as feeling hot; then sharp, exaggerated pins-and-needle feeling; then a burning pain. If I look at them, they'll be bright red. Flares in my hand start as tingling and warmth and throbbing, sort of like when you smash a finger in a door. And once they happen, they last for a while, even if I go inside and cool them off.
During warm weather, I flare daily sometimes just continually in my feet. It is so frequent that I can’t put a number on them. I flare every evening, generally from 5 PM until the wee hours of the morning. As a result I am often sleep deprived. The sheets can’t touch my feet. I only get relief in winter when it falls below 40 degrees F. People think I am crazy to wear flip flops in the winter. The flares in my feet seem constant. My hand flares less often, a few times a day, and they do not last as long, 30 min.- an hour.
Either I’m really lucky, or the doc is wrong, and I have something other than EN, but I’ very lucky that my flares are rare. I can go months in between flares. I tend to flare more in the summer, of course, but once in a while, I’ll get a flare in the winter, usually reactive from Raynauds.