Triggers besides exercise and heat?

I'm wondering if anyone has found they have triggers besides heat and exercise?

I've found my most reliable trigger is if I get angry. I joke about it because it's kind of like the Incredible Hulk. If I get angry, I immediately flare. Always. Fortunately, I don't get angry often. Also, anything that provokes the "fight or flight" response seems to cause it. If there is a commotion or panic, that provokes a flare.

I think it happens because both circumstances cause an increase in blood pressure. Because the reverse (lower blood pressure) seems to improve it.

Case in point – during a phlebotomy last year, I briefly passed out. I hadn't drank enough water or eaten anything prior. When my blood pressure crashed, my knees (which had been red) went completely white (as did the rest of me). Once the nurses stabilized my blood pressure, the redness slowly came back.

I've also found if I only get a few hours sleep, my symptoms are worse. Once I get proper rest, symptoms stabilize. I think that could also be related to blood pressure, which rises when an individual is sleep deprived.

Has anyone else experienced similar circumstances or found other direct triggers besides heat and exercise?

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Hi there.. I have had symptoms for 10 years.. progressed more rapidly over the last 3 years. Heat is my #1 trigger, Emotional stress (anger and sadness) mainly anger.. lol but yeah I think your pretty much describing alot of us.. at least from what Ive read. I only started researching this a year ago. I have noticed that when I get good sleep (which is rear) and its cool outside and no stress or worries I have less problems...

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Hi carterdk - heat and exercise are my primary triggers but I also have a tendency to flare if I am feeling stressed or anxious. It’s definitely motivation to stay calm.

Hi
Yes stress can trigger it and it is better to have low blood pressure mine has gone up a little I have mexalintine and it made it worse I hope it is not perminant any other ideas

For me staying cool is super important. 68 degrees is good. I also will flare if I get quickly stressed of angry. Also stay away from alcohol, and sugar, both of those will trigger flares in me. Peace.

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I'm new to this but my initial onset was while I was exercising. I noticed that the heat, exercising, and warm (not hot) showers are triggers too. Its definitely worse for me in the evenings. My office is always cold and my blood pressure runs low so that problems helps. My Dr suggested an aspirin a day. I also noticed Celebrex (an anti-inflammatory) has helped. When I take one, I only take a low dose aspirin. I'm not sure if the aspirin has helped or if my issues are not consistent. I read that some people get attacks and others are consistent.

I've identified lots of triggers. The top 4 triggers for me are:

1) Heat (of course)

2) Caffeine = Equally as bad a trigger as heat!! With caffeine sometimes I flare within the first hour or 2, typically this is with 60mg or more, but consuming any amount of caffeine produces an after affect, which is far more intense flaring, the skin gets hotter, feels tighter, and even looks angrier than normal. I'm guessing once the vasoconstriction effects of caffeine wear off, the blood vessels dilate, exaggerating flaring? Just a theory.

3) Alcohol - I'm always only 1/2 a drink away from lighting up like a Christmas tree, lol

4) Lack of sleep

Sleep is a big one for me. I've only had EM for 2 years now, but prior to my EM surfacing, I had been struggling with insomnia for an entire year. I was averaging 4-5 hours a night, some nights I'd get as little as 3 hours. A whole year of that and BAM, full blown EM. Once I realized my sleep played a huge role in the severity of my flares I made it my number 1 priority to SLEEP. I still struggle with this and have to take a number of supplements to help aid me in falling asleep, I stick with mostly natural stuff now. I've tried lots of different medications at this point, but the side effects were almost never worth it and nothing, I mean NOTHING, took away the burning fire that was my hands, knees, elbows, and feet. Even the bridge of my nose will flare and light up like Rudolph, which actually used to be much worse before I started taking Celebrex. During a flare, the inside of my nose would swell to the point that I would struggle to breath while I was merely sitting, this happened every single day, at least once, but usually numerous times, it became quite debilitating, not to mention highly annoying. Luckily Celebrex has almost entirely eliminated the breathing episodes, exempting when I lift weights or do other strenuous exercise so I have to be careful then because if I push too hard I'll end up feeling like I got punched in the face afterwards...fun-times I tell ya! Lol

So back to sleep...I now average 7 to 9 hours per night and while the severity of my flares have improved, it's far from miraculous. Sleep quality is still an issue, I flare the worst from 6pm on, peak 'burn time' is approx. 1 to 3 a.m. at night and, as you all are likely well aware, it's hell trying to sleep when your whole body feels like its burning. Ooohh the irony; try to get more sleep to avoid flaring, but flaring is the reason you can't seem to get more sleep :::sighs:::

Other triggers for me are:

staying up later than my normal bed time (sleep again)
dehydration seems to play a factor

standing for 10 or more minutes in the evening

over using my hands typing during the day time

stress (fight or flight) or an intense emotional reaction

mild or moderate activity even if I manage to stay cool my feet and hands will usually flare

moderate to intense exercise with the lovely aforementioned swelling of my inner nose and difficulty breathing

The most stable my symptoms have been since their onset was this last winter 2015/2016. I eliminated caffeine, rarely drank alcohol, got more sleep, and as long as it was below 50 outside and 63 or under in the house my EM stayed fairly mild. I still flared but it was much more mild, and far more tolerable. It's May now and I live in Southern Texas...I know, worst place EVER to be suffering from EM. I find myself constantly day dreaming about moving to Alaska and living in an Igloo where I'd hug my icehouse nightly and sleep like I was dead...

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I hadn't thought of taking aspirin daily on top of the Celebrex...I worry about taking that many blood thinners at once, but with summer about to start, I'm feeling a little desperate so I may give this a try.

Michele said:

I'm new to this but my initial onset was while I was exercising. I noticed that the heat, exercising, and warm (not hot) showers are triggers too. Its definitely worse for me in the evenings. My office is always cold and my blood pressure runs low so that problems helps. My Dr suggested an aspirin a day. I also noticed Celebrex (an anti-inflammatory) has helped. When I take one, I only take a low dose aspirin. I'm not sure if the aspirin has helped or if my issues are not consistent. I read that some people get attacks and others are consistent.

Mention it to your Dr. It’s can’t hurt to ask. I don’t take Celebrex daily, but the Dr suggested on days that I do, to only take a low dose (baby aspirin) once a day.

I’m very new to having flare ups but, I am a high level stress type person and I think that makes things worse. Since this has all started in the past month I’ve noticed I’m more emotional than usual as well. I have insomnia as well so reading about the sleep issues really hit home.

Hello all. Just a little input on the low dose aspirin. Taking it should not be counterproductive, but if your doctor is knew to this the aspirin is always the first thing to try. The idea behind it is if you have an underlying condition that can be remedied by taking the aspirin, then the EM will subside. My doctor tried this approach with me first as well. I did not have the underlying blood disease so the aspirin did nothing to help the EM.

Keep in mind that for most people this is a process of elimination. Don’t quickly loose heart! You will find the correct mixture of meds to help. I highly recommend keeping a diary of symptoms, triggers, and meds used. I look at this as a battle and I intend to be victorious. So every small victory I celebrate! I focus on the good things in my life that I have some control over. Things like love, joy, peace, kindness, relationships. Peace!

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Hi

You are so right we can easily fall into dispare I am there now but!!!

Will still fight going to see doc Monday as I have been in the house for a week and that is

Not like me make sure you find a good doc that will work with you and right everything down that happens to you good and bad and research as much as you can there is a lot out there . The doc I have is doing that and sends me info got to love him , he is 73 will not be working for long I dread that day . Keep moving as much as poss as my lovely dad would say to me keep eating and moving

Stay positive

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Should have said lovely dads

As far as the aspirin goes, if you are not told to take it by your Dr., please don’t. Like Ibuprofen, aspirin thins the blood and prevents clots from forming. Although the National Organization for Rare Diseases states they know of no reason that erythromelalgia begins, they have found many people diagnosed to have undiagnosed red blood cell disorders, or have a family history of such. As aspirin effects the consistency of your rbc, it’s probably best to ask your Dr. If using it to manage pain is right for you.

Spicey foods alcohol also tigger flares . Does anyone experience numb toes and hands with EM ?
Even filling my nails would hurt .

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I’ve noticed filing my toe nails has become fairly uncomfortable, just on the smaller toes though, and it only started after the EM surfaced. I don’t however suffer from regular numbness in my hands or feet though.

Responding to Flame’s Comment:
"Spicey foods alcohol also tigger flares . Does anyone experience numb toes and hands with EM ?
Even filling my nails would hurt . "

I am wondering if numbness is EM or something else

Anyone else have any numbness . I am now at the point that the flares are consistant can not really go anywhere now I hope doc and I can find something to help very scared

Thanks Elizabeth

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I think friction or pressure on the affected body parts can trigger my EM. My hand(s) flare from petting my dog, who has coarse, curly fur (Bichon Frise); so that’s why I think maybe it’s friction. Petting a smooth/soft-furred animal doesn’t trigger my EM. As far as pressure, I think that because I almost always flare on the side of my face and often the ear I sleep on. I suppose it could be heat triggering it, though. But, then again, the rougher my pillowcase, the more easily it’s triggered (I try to buy soft, high thread-count pillowcases for this reason).

My triggers (in addition to temperature and exercise) are:

sugar consumption, lack of sleep, and bright incandescent light and natural sunlight.

I have no problem with florescent lights.

Unlike many people with EM, I’m fine with spicy food (as long as it’s cold) and coffee.

Alcohol and low normal potassium levels. Also I’m allergic to dairy…so naturally I want to eat it and when I do, I have some issues. Hope to be helpful…