Great infographic on icing/heat therapy for pain
I am just like Alina Delp. My feet react the same way now to cold & I get Pernio. They can be burning 1 minute & 2 mins later they can be freezing. This just started winter of 2013 & I have suffered with Pernio this winter since last November. And they can start out freezing when I go to bed & a half hour later they are burning. Then it takes sometimes up to 3 hours to get them to stop burning. I go thru this almost every night. Also, one foot can be burning & the other foot freezing. And /or one half of foot can be burning & other half can be freezing! I’ve had EM for 15 years. Since the beginning it has progressed & gotten worse each year. This winter it went to my face. I do try to control using ice but it’s the only thing that works for me. I also now have neuropathy & am on Gabapentin. But, when my feet are hot they act like I’m not on gabapentin at all. I can’t go anywhere except to a restaurant & I bring my bottle of ice. Otherwise if I go shopping I have to use an electric cart. I just started doing that last week. It’s embarrassing. Well, will go now. I am so glad that I found this site!
Such a strange condition Miss Patti. If I didn’t experience this myself it would be hard to believe! I know how you feel regarding the electric cart . I fought this too . I’m glad you moved passed the embarrassment. You do what you have to in order to live the most life you can. Those nights you described with burning and freezing are the worst. What I wouldn’t give to just be comfortable for a little while.
I’m sorry this has moved to your face. Mine has as well. It can get so challenging when it is all over and bouncing around from freezing to burning and back again. It is as if you live walking a temperature tightrope day in and day out…never ending balancing.
I don’t mean to sound negative it’s just crazy to read how others such as yourself not only have this but the crazy version of it too.
I hope your tightrope is stable enough and you find some comfort Miss Patti.
Miss Patti and Alina, do your ears feel as if they have closed up when you flare? My hearing diminishes and it’s quite disorientating. My head is the only part of me which never freezes.
I haven’t noticed that with my ears. I have tinnitus so something’s always going on in my ears! But, my face just started flaring this winter. It’s only happened 5 times & it went down my neck on to my chest. If it acts like my feet & hands it will continue to get worse…but I hope not! I’ve been living with EM of my hands & feet for 15 years. Hope you have a good day!
You don’t sound negative to me! It’s just the reality of it all. It’s nice to meet someone who can identify with what I live with. I wish for comfort a lot & I will wish for comfort for you as well!
Alina Delp said:
Such a strange condition Miss Patti. If I didn’t experience this myself it would be hard to believe! I know how you feel regarding the electric cart . I fought this too . I’m glad you moved passed the embarrassment. You do what you have to in order to live the most life you can. Those nights you described with burning and freezing are the worst. What I wouldn’t give to just be comfortable for a little while.
I’m sorry this has moved to your face. Mine has as well. It can get so challenging when it is all over and bouncing around from freezing to burning and back again. It is as if you live walking a temperature tightrope day in and day out…never ending balancing.
I don’t mean to sound negative it’s just crazy to read how others such as yourself not only have this but the crazy version of it too.
I hope your tightrope is stable enough and you find some comfort Miss Patti.
My ears don’t plug up Nel but like miss Patti I I get tinnitus too. Not so disorienting but annoying for sure.
I am so used to the low roaring in my ears that I am shocked on occasion when it suddenly stops and I can hear normally again. No wonder I get grumbled at for having the TV up too loud.
Okay here’s our take in ice for mom’s condition but she only has a bad case ornament burning only condition of EM without any other condition like raynards.
Mom can use ice packs but often hasn’t them covered. She uses ice in ice water or cold ice packs or ice pack substitutes like blue peas in ice pack bags frozen. Mom does not directly place ice packs on her skin. In water she may put cubes of ice to chill down the water to be as low as 40 degrees F… Flir One images show cold around perhaps a six to a dozen ice cubs floating in cold water foot bath. She only chills the feet now, not ankles anymore that was an early treatment for her during the first year or so onset of em.
Having the feet wet with water draws more heat out than AC can because water is a denser medium. She recovered in ten minutes from a very severe flare, using an EB chiller and ice packs. So ICE and cold water can help stop a bad flare and restore functionality lost. Mom thought in retrospect that the ice was on her body for hours in the ER but it was only for about ten minutes. With any cold therapy with ice water, wet cold socks, or AC there is a risk of frostbite. so the EM patient may be at risk. But for mom’s condition she can handle three times more chilling than a normal person. If I put a big tray of ice cubes like a dozen into a small dish pan of water with not much cold water in it. And handle it much better than a normal person would. This because her flares are like a heat engine and will heat up the water. If she is in very cold water or AC for a long time she may sense her feet are to cold and to frozen.
She only had one occasion of pre frostbite with blood blisters from frost bite threatening in 16 years and a lot of air chilling and a lot of water chilling, but we were not using ice for maybe seven or more years. We returned to ice for the freedom of being away from as much air conditioning so it’s allowed quick chilling and less wrapping from AC chilling the patient and the rest of us in the room.
Ice and water can attack the feet. They can destroy the toenails, it’s important to note using ice is freezing the nerves actually what em patients are literally doing is performing a kind of temporary nerve block in a sense within cold ice to calm down the nerves. When I realized that I was able to articulate that diagnostic nerve blocks for EM make sense in a way because it’s just a kind of three hour ice replacement by medication rather than typical environmental chilling.
Ice and cold chilling are not bad and are actually a requirement at times Ron stop severe pain which no opiod level would likely solve. It freezes out the pain but has risks which have been mentioned here.
Most patients are smart enough to take it easy and realize the side effects of ice for their feet. For a severe case like my mom has only environmental chilling canhelp with some flares. Nothing in the standard set of pain killers including opiods and not even fentynl 50mg, 75mg or higher pain patches can stop the flare. (She is at the 50mg level down from the 75mg of years ago.) Her EM isn’t a monster compared to opiod pills. A dose to bring down that flare pain without conventional opiods will kill her before we’d get relief.
Mom almost got frostbite once in the past 16 years, but not from ice in water. Never from that. But she could have done it if she’s did major ice chilling. We are only using maybe 4 ice cubes per foot in chill water or I will use ice packs in old socks to chill the feet. Emergency cooling may use a direct pack of ice but she wears diabetic socks much of the time now, so that moderates some of the cold.
Water can and likely will cause some skin damage and may be a infection risk so it’s looked down on by doctors and foot doctors may worry about infection risk and start acting to preserve the skin from an infection. They act more afraid of a skin infection than EM. So you may lose your toenails from water immersion or some drugs.
A Neurologist told me. . .
To reduce the infection risk: add a small amount of peroxide to the water bath. That will keep germs at bay. Or Epsom salts can be used. We received this information from mom’s neurologist and it helped keep infection at bay.
Mom took a pill or cream that really messed up her toenails and caused them to fall off. She blames a drug from a doctor(md) she visited. She lost most of her toenails from a topical drug, not ice water immersion.
This of course is our experience. If you’re tired and groffy or just having fun in a rare car drive with cold feet they may be nearly frozen and you won’t realize it, that’s can become a risk and problem that can lead to pre-frostbite. Mom’s hand it from over an hour off AC from a car vent norm realizing she was on the ac for to long.
So be careful out there.
My mom’s condition isn’t such that he her feet feel fine if the skin temps isn’t 72 degree f. Or maybe 80 to 85f. What’s normal for her skin at 95 degrees for example shouldn’t be normal but can cause severe pain.
Some rarely drug treatments may help more, but these have more risks. Ketamine creams, or some other treatment should may be as good as a nerve block or cold ice therapy.
The most important thing is to no overdo chilling of the feet, but for more EM patients chilling is more of a Godsend than a risk.