What Are Your Top 3 Ways In Dealing With Flare-Ups?

General
1

Hi Everyone - first post here - my name is Sean, I am 29 and have been dealing with EM flare ups for a little over a year and although I have improved in my ways of handling flare ups wanted to pose the above question in hopes to learn more tips - I've benefited from many of your posts and want to thank you for taking the time to share.

Your top 3 are certainly welcomed and at the same time I am additionally interested in knowing:

  • How you deal with flare ups when you are not at home? Personally, I use a combination of using a spray bottle of room temp water and a fan (office or car) to cool off. This is very effective but limited.
  • Showering is challenging - I've used a stool, flipflops to prevent standing in warm water...etc. - any other tips?
  • What do you folks do with footware - I have to wear dress shoes at times for work and they are like an oven for my feet. Does anyone put something in their shoes to keep the soles cool? Very open to suggestions here...
2

Hi Sean, great to have you with us.

I'm 34 and I've had EM since I was seven. It sounds like you're doing a lot of good things to deal with your flares.

For flare-ups away from home, another member mentioned a fan that you can get on Amazon.com that can be powered by USB or batteries and you can put a wet sponge in it to help even more. As I live in the UK and they won't deliver it here, I am unable to personally vouch for it, unfortunately.

For showering, my shower is actually over the bath, so I kneel down and use the shower-head by hand, rather than leaving it on the wall. I also make a small "dam" with a towel, just at the ankles, so that warm water can't get at my feet from below. That way, the water never touches my feet until I switch to cool water in order to wash them.

I use shoes that are larger than my actual shoe size and put gel insoles in them. I put the insoles in the fridge for a short time, so that they are cool without being really cold. If you have a fridge at work, or if your employer would allow you to use one of the little ones (the kind that take a couple of drinks cans/bottles), you can take extra pairs of insoles to swap over during the day. You could also use the USB fan on your feet as often as possible, such as when you're changing insoles. If you can't change the gel insoles, take them out once they warm up too much, to give your feet room to swell. Having the larger shoe size also allows for your feet to swell. For my sister's wedding, I actually had two pairs of identical shoes apart from one pair being a size larger than the other pair, so that I could change them as my feet became more swollen. Thin silk socks can help, as they allow the heat to escape.

I hope that helps.

3

I have only had this since Feb... but I will contribute too!

I use essential oils. I have a tiny spray bottle that I have mixed cooling oils in with water. The spray bottle is the size of chapstick... so it is easy to use. I can spray the oils on my feet. Doterra has a few oil blends I love. It is always refreshing.

My husband just bought a large tower fan for our room that is near my feet. We also have bought a portable version to bring with us.

I get under the covers at night but fold the covers back off my feet. I know they have special things you can use that make it so the blankets cover your feet but do not touch them.

4

Not at work, flip flops become your best friends year round. Wet wash cloths are my new best friends... soak them so they are slighly damp and cold. Use on your feet when flaring or burning turn the cloth often and fan in the breeze to recool. I often leave them around my ankles which keep my feet cool. Fans love them... every where. Nothing on or touching your feet whenever possible. I use my mom's handicapped shower, use luke warm water, sit out of water as much as possible, she has a hand held shower wand that I can aim away from my feet. Do not soak feet in cold water this can damage your feet. Use cold packs sparingly.

5

Welcome and I also new here, looking for relief.

Flip Flops are my friend. I have given or sold every pair of shoes. There i s no way I could wear socks, shoes, nylons without tearing them off in shreds. :)

Showers are very quick and cool and when I turn off shower I let a little cold water on my feet. Bath once a month, My husband put a stool, I prop my feet, drain water then stand.

I have had to emphasis to be able to get though this.

Bedtime, I have to have a fan on my feet and my feet are not under covers, Sometimes I will use a ice pack to get to sleep.

I was at Dr.s yesterday told me Not to use ice water, he has been in touch with Mayo clinic and that was one thing they had states.

My Dr. has disabled me so I do not have to go into a job.

But I get plenty looks with flip flops in the winter, church, etc,

Hope this helps you some.

6

depends on

how severe the flare/humidity/body temperature/ambient temperature/barometric pressure/ how windy it is/ if i need to walk more/ time of day and MANY other factors

its hard to map out everything but i have all sorts of flares, and each one is dealt with in different ways. When i workout, i flare up, but its much different then a deep flare that makes me not walk, its more of a superficial flare that i can walk with. some flares are like chemical burns, and some sting really badly. Some flares happen if my whole entire body is to cold, and some can happen if my body gets to hot. when i need to walk far, i usually instantly flare up, but i will sit for a few minutes, then after it leaves, i can walk twice as far, then i repeat the process till i can walk a good distance (depending on other factors as well)

for a deep flare (like the chemical burn/ boiling oil) i do this:

lay on back, on the floor

have huge trash can with really cold water next to me

have some kind of moisturizer on feet to prevent ulcers, lotion never works, vasoline is better

dunk my feet in cold water WHILE on the floor so i can have my feet elevated and cold at the same time

the key to getting rid of a bad flare for me is elevation WITH cooling at the same time.

coldshowers sometimes, not so good if its humid and freezing outside. if its really windy out, i wet my shirt and get soaking wet and let the wind chill freeze my whole body

oh and a extra bit of help is taking a huge gabapentin if i know im going to flare (stuck in a hot enviroment for whatever reason)

for everyday flares, i almost always deal with them by using huge jugs of water that are at room temperature (usually just cold enough) and put my feet on them. this way they dont get dried out from the water/ice/wind and my feet are ready to go really quickly

7

If it is a really full on flare I put my feet in thin plastic bin liners and dunk my feet in cold tap water. squeeze air out of the bags round feet. This way you keep your feet dry and they can cool down.

At night I use a fan (all night) but have learnt not to have it too near which in the beginning caused windburn that took ages to heal.

I slap on a thick moisturising cream and then put on thin cotton socks and stick my feet out of the covers and let the fan do the rest. Works for me anyway.

If going out somewhere I am going to sit for a while eg., restaurant. I take gel packs cooled in the fridge beforehand and put them on top of frozen freezer blocks and then wrap them in a thin cloth before putting my feet on them.

Can't help with the footwear bit as i just wear flip flops most of the time.

I have an overbath shower so can fill the bath up with some cold water to stand in before starting to shower and then get clean before the water heats up too much.

8

Sean,

When I shower, I first run about six or eight inches of cold water in the tub. I stand in the cool water and that keeps my feet cool for ten minutes of warm showering.

Richard

9

Because we are both from Scotland I know you can get this… My shower is over my bath as well but I got in contact through social work (I think) to occupational therapists who got me a board seat that attaches over your bath and you just put it on and take it off! I also got a little stool off them, so once I get in the bath for my shower I just sit on the bench board then put my feet on this stool so no water touches them! It has suction pads on the legs so it sticks to the bath grounds! Would be soooo much easier for you (and comfier).



starsmurf said:

Hi Sean, great to have you with us.

I’m 34 and I’ve had EM since I was seven. It sounds like you’re doing a lot of good things to deal with your flares.

For flare-ups away from home, another member mentioned a fan that you can get on Amazon.com that can be powered by USB or batteries and you can put a wet sponge in it to help even more. As I live in the UK and they won’t deliver it here, I am unable to personally vouch for it, unfortunately.

For showering, my shower is actually over the bath, so I kneel down and use the shower-head by hand, rather than leaving it on the wall. I also make a small “dam” with a towel, just at the ankles, so that warm water can’t get at my feet from below. That way, the water never touches my feet until I switch to cool water in order to wash them.

I use shoes that are larger than my actual shoe size and put gel insoles in them. I put the insoles in the fridge for a short time, so that they are cool without being really cold. If you have a fridge at work, or if your employer would allow you to use one of the little ones (the kind that take a couple of drinks cans/bottles), you can take extra pairs of insoles to swap over during the day. You could also use the USB fan on your feet as often as possible, such as when you’re changing insoles. If you can’t change the gel insoles, take them out once they warm up too much, to give your feet room to swell. Having the larger shoe size also allows for your feet to swell. For my sister’s wedding, I actually had two pairs of identical shoes apart from one pair being a size larger than the other pair, so that I could change them as my feet became more swollen. Thin silk socks can help, as they allow the heat to escape.

I hope that helps.

10

Welcome!

I’m 17 and have had this for 6 years now but they reckon I may have had it since I was born! Umm il give you a list of things that help me or help me cope better.

FLARE:
I use a desk fan with good power settings and sit it on the floor next to my feet, if burnings worse I put cold water in a spray tin and scoosh it on my bad areas and with the fan and the cold it’s really good without damaging your feet! … If your flares happen at certain times as I know some peoples do… Put fan on in plenty of time to prevent it. Going out in all kinds of weather it’s. Sandals only for me! and light clothing too as if the rest of the body’s warm, it will eventually reach my tootsies! If you get hand EM, same goes put hands under a fan or place hands on cold surfaces!

BED TIME:
Bed time for EM sufferers is hard for most! Especially getting a flare and trying to sleep through it is real difficult… I put my desk fan on a stool beside my bed, facing my feet… Your probably thinking ‘ahhhh cold’ but it’s not if you wrap up good! - I can’t go under the duvet covers personally as its too thick and I also can’t have it past my knees which is tricky… So what I do is get 3 cosy fleeses and wrap them right round me, wrap them good at knee length and if no cold airs getting in you’ve done it right! Also I find throwing cold water over my face right before bed, keeps me real cool for the time being.

PAIN MEDS:
I have been on Gabapentin and Dihydrocodeine from the start, Gabapentin does nothing for me now as the body builds up a tolerance to it unfortunately, but dihydrocodeine really helps my sore feet and numbs them a little but doesn’t stop burning sadly…
Gabapentin i was on 1200mg, 3x per day
(now its 600mg, 3x per day)
Dihydrocodeine is 2 .60mg, 3x per day

Dihydrocodeine helps me a little when out.

AVOID:
Hot indoors, if your out+walking in hot indoors you can flare like crazy! In your own house Maybe have no heating on? … I avoid socks and trainers and boots as they badly make me flare!! … A lot of people say diet but not everyone’s the same as my diet has nothing nor triggers my flares … Too much exercise like gym workouts (OUCH) … Hot water, it’s obvious I know but I try keep that well away from my feet. Heats everywhere but trying to avoid it does no harm in trying… Just plan days out well.

Hope this helps you in some way! Hope you only have mild EM so it’s not too bad for you as your really lucky you can still work and things, hope that keeps up for you!!. (as I said above to starsmurf that’s what I do shower wise).
I know I’ve went on a lot but thatshow I deal with certain flares at them certain times!

11
  1. I take my portable air conditioner unit when going to the doctor. when in the car the AC is on and have gel packs on the floor. I have not not had shoes on for two years.
  2. Showering I have a pan of cold water in the tub and have my feet in that while I take the shower. The pa of cold water should be right up to the top so the shower hot water runs out the top and the water stays cold. Very quick shower and get those feet out of that cold water. Also I take a spit bath using disposable wash cloth so I don't have to take a real shower as often.
  3. I can not wear shoes so have no tips on this question.
12

Hello everyone.

I have had Em for 4 years now. I cannot walk far due to the flare and pain, which is so debilitating that I really don't venture outside my front door unless absolutely essential.

I deal with the flare by lying on the sofa and having a fan directly blowing on my feet. Sometimes it works sometimes not.

In my bedroom I have an air-conditioner and fan going 24 hours. It has got so bad I cannot even put my heels on the mattress. It looks as if the skin has thinned on my heels too.

Shower, I put the plug in and run some cold water to stand in and then no contact with warm water.

One of my worst condition with Em is my skin is so dry, almost as if the heat inside has burnt the outside. If I try to condition them then I get very bad flare. I also feel incredibly embarrassed as they look like reptiles!!

Shoes, what shoes! Flip flops all year round. I miss my shoes so bad.