How do you describe EM to friends, family and that specialist?

Hi Guys,

Saw this interesting blog on the Mayo Clinic website. It got me wondering how everyone describes EM to their family , friends, and that elusive EM aware Dr

God bless


Great find Mads! Interesting thing he mentioned is that patients use ice too much causing frostbite and skin damage. I saw this doctor at the mayo and unfortunately was not aware of his thoughts until I was gone and later saw my records. I do have visible changes is my feet from prolonged episodes of pernio in my feet that just happen and actually started happening before my EM by a few months and continues to happen as I know there are others here that go back and forth between the two ( Raynaud's /EM). This isn't because of excessive use of ice as a matter of fact I have rarely used ice as a cooling method. My records indicate he believes my Raynaud's/Pernio/Levido reticularis are caused by my excessive cooling methods. I have no idea how to make this more well known but it is a little worrisome that one of the worlds best doctors for EM isn't aware of the connection for a lot of us between the two opposite extremes.

I guess all I can say is if you are going to see him or any other doctor for tat matter and you have both problems please make a point of making your doctors aware of both problems and bring the Raynaud's part up again to keep it as part of the equation. I know for most of us it is the least of our problems compared to EM so it is easy to forget about when seeing the doctors but it is still a very important piece of the puzzle for those of us that it happens to. As Mads asked..... how would we explain our EM? I wish I could go back in time when I saw this doctor and explain it better including that aspect so he could have a better understanding especially being that he is the one so many people go to see for help.

Now to make a long post longer! How would I describe my EM. I know everyone's EM is different so this is just one story. It is like they all have their own personality of sorts! I want to say it controls my life but I don't like the way that feels. I am still in control but I have had to seriously change the decisions I make in life because of this. I have EM over most of my body only sparing my trunk for some reason but it does effect my upper chest. It rarely effects my whole body at the same time thank you god! It usually effects a few body parts at a time for a few months at a time mixing it up usually including my hands and feet at all times but my arms , legs , face , scalp ,tongue , and vagina come and go. Within that it can be anything from an uncomfortable warmth to severe burning as if I am being burned alive with this extreme pressure like a turbulent whitewater feeling of electrified needles attempting to make my hand, feet and sometimes knees explode!

I have tried a array of meds to help with pain with little effect. What helps the most is keeping in a cool environment but not too cool!!!! because my problem with the opposite Raynaud's /pernio /levido reticularis. It is difficult to manage because it happens all over so I can't just go somewhere and bring something to cool my problem area becauseI have too many problem areas! I spend 99 percent of my time at home where I do find relief at least during the day. If I don't move around too much and keep my legs up in my recliner in a 60 ish degree room I can avoid a great deal of pain. At night for some reason all bets are off! There is no temp that is cold enough. I can be shivering and still I burn! No sense in that because I burn anyway so I just go with it as I know you are all too familiar with. I dream of being comfortable some day. A nice comfy warm. I must stay just uncomfortably cold not freezing but not cozy if I accidently get comfortable for more than a minute or two the burning begins.

There are a few stores I can go into for 5-10 minutes on my good days. Mainly the grocery stores as they tend to be cooler but if I over stay I pay for it. I do most of my shopping now online. I am so grateful to live in the days of the internet! In the summer I can't leave my house at all after 10 am because just the few steps in the heat to the car is too much.

There is a serious change in social life. I can't tolerate room temperatures that others choose so no more going out to dinner or friends houses. Most people have stopped coming by my home as well because it is just too cold in here for them. Don't get me wrong I still have my true friends and family that come by they just know to dress warm!

Every little thing is a challenge now. I must admit I am not able to shower every day. That is always a difficult and painful ordeal. Sometimes I can't get to bed because I am faring too bad and the thought of walking to the bedroom when I can just stay in my recliner to sleep is just too much. As you all know it multiplies significantly when you lower your feet and try to walk.

I am passed one of the hardest parts of this condition which is not knowing what it is and not having a diagnosis. Emotionally I am in good spirits 95% of the time. My heart goes out to those that are still fighting the fight. Those that are still being told they are crazy by their doctors or family members. It isn't a physical part of this condition but a very real part of this condition. Hang in there and don't take your crazy for an answer!

My dream is of course to totally cured but I am shooting for the ability to sit in a 70 degree room. Go out to dinner , sit in other peoples houses. Wear normal clothes and my favorite shoes!. Once I get that I will shoot for more.

Sorry to be so long winded. Keep in mind even if I made it sound sort of terrible ( IT IS SORT OF TERRIBLE!) I do have long periods during the day resting in my AC home with very little pain. It isn't as if I am suffering in agony all of the time. That would only happen if I tried to go outside. :)

I know others Don't have it quite so extensively and I am sure they will post too but I just wanted to say just incase they didn't that it isn't so extreme for everyone and there are some that have more difficult cases.

Take care,



You are AMAZING,Mads! Whatever answer I’m looking for, you have it. My family just DOESNT GET IT! I burn every day! It usually starts getting bad midday. I try to get everything I need to do, done by noon. My family envited me to dinner tomorrow. I’ve told my sis-in-law countless times about my EM and I guess they just think I’m a drama queen. I’ve just sent her several web sites by emai THIS MORNING hoping she’ll finally GET what I’m talking about. I’ll also text her a photo of my red hot palms today. It’s SO FRUSTRATING! Pain is embarrassing. At least to me-having to explain it over and over. ARGH!!!

Dear Alina, I am so touched by your story. My EM started in the palms of my hands over the last month or the burning has started up my arms. I’ve started electrical shocks down the sciatic nerves in my legs and into the soles of my feet. Last night a flare started there but the burn only lasted an hour or so. From noon on, I know I’m going to be out of commission every day. Friends and family just don’t GET IT ! It’s personally embarrassing to repeatedly explain I’m in pain. Your story is so relatable to me. I also do a lot of my errands on line. I go to the grocery store & drug store once a week and early in the day. My pain is majorly in my palms and just holding the car steering wheel can start a flare. I hope you have a really COOL day. Patricia

I give them the link to NORD (National Organization for Rare Diseases ) and, let them read about it for themselves.

I unfortunately have not been diagnosed yet, but anxiously awaiting an appointment with new specialist. I don’t have daily flare ups, I flare up for 3-5 months at a time. With severe swelling, blistering and eventually split open feet. One of the symptoms besides the burning that really grabbed my attention upon findingthis group was the nighttime horror that every person here can relate to. It’s always worse at night. I literally feel like I took a leisurely steel through a campfire. When this first started a few years back I went to the hospital emergency looking for answers and some treatment and a doctor actually did x rays of my feet thinking it was some type of infection or chemical burn that had gone into my bones. He was looking for what they call forth degree burn in the bone. Then it will heal up all nasty and more scarred with every flare and I get a couple months with very little burning to build myself back up to face down the next flare up. The first couple of years it only flared up once a year in the early summer, now is a couple times a year. Thankful is not full time, I at least get those few months off to enjoy life with my 4 kids who try so hard to be understanding

Natalia, I’m sure I might have asked you this before has a dermatologist looked at (or biopsied) your swollen, blistered and split skin on your feet? This sounds similar to the psoriasis that I get on my feet. And am I remembering correctly that you also have an inflammatory arthropathy? I have psoriatic arthritis myself and this all sounds horribly familiar. Just throwing another possible option out there to consider. JulesG

Sorry I haven’t replied sooner. I’ve had a little trouble navigating this new site. Yes I’ve had two biopsies done and the dermatologist said they were inconclusive. My dermatologist has now referred me to a dermatologist/rhumatologist who also did a long stint in hemotology I already have one of each of those but they don’t work together. They are all working on separate things and won’t risk bruising each others ego’s . I go to see this guy in Dec. So hopefully with only one cook in the kitchen, we might get somewhere. I also do have psoriasis on my scalp and it feels nothing like my feet except the extreem itching. My feet burn so bad it feels like I poured hot oil on my feet. I’m not even positively sure what this is, but after so many doctors throwing their hands up and years of pain I had to search for answers myself. This em is the closest I could find to fitting with what I experience. I honestly hope they find something else in December. Something with a cure, or at least something more treatable because frankly I’m terrified of this condition. Every flare is worse than the last and in between I fear for the next. They think I’ve developed fibromyalgia from having the severe pain for such long periods at a time. Thankfully I’m only expediency very mild itching and burning in the evenings right now when I’ve been on my feet allot. This time last year I was blistered and unable to walk and literally on fire.

Also I forgot to include that the burning and itching starts from deep inside. Kindof like my bones are burning then these welts start rising almost like hives but they don’t move around. It’s almost like the blisters start deep in my feet below my skin and slowly burn their way through the layers until they are big fluid filled blisters. This process takes about two to three months some of them start later some spots don’t actually blister. The last flare up I couldn’t wear shoes for 5 months.

Just thinking about your blisters. Do they ever break your skin? The reason I ask is that this happens to me, but they do break the skin and then I end up with ulcers. Well I say I end up with ulcers but not anymore. It took years to find out the cause of my EM but I think at long last they have. The doctors kept saying my ulcers were caused by poor circulation for a long them. I have rheumatoid arthritis and in August I had wrist drop and my rheumatologist thought I might have rheumatoid vasculitis, which would cause the ulcers and my EM. I have had two infusions of Rituximab which was originally used for cancer, but is now approved for vasculitis. The difference is incredible. My ulcers are improving rapidly and my EM is nothing like as bad as it was. Unfortunately just before the infusions I had to have my right leg amputated as some of the ulcers had turned to gangrene if only they had found out earlier my right leg would probably have been saved. Of course this might not be what you have but as you are going to a rheumatologist I just wondered if they suspected it.

Hi I am fairly new to EM diagnosed couple of months ago but had the symptoms for over a year now. I have tried several medications that haven’t worked, currently on sertraline 100mg. I suffer with redness and burning in my hands, feet and also on my face, shoulders and arms, I suffer with pins and needles, pain when walking, pain when I’m to warm, I constantly feel like my body is over heating and my skin is being burnt, it becomes very itchy which I then scratch and my skin blisters and breaks. I wake up everyday with pain in my hands and feet and it can take me a while to get moving, sometimes my hands look like claws, to painful to open up. I was referred to community dermatologist to be told they do not treat patients with EM so it’s back to my GP. I do not know much about EM, it’s prognosis, how I will cope if it becomes worse, I enjoy holidays in the sun, but not sure how this will affect me now. My medication reduces the amount of hot sweats I have but does nothing for the pain or burning. My main problem at the moment is my skin because it’s blistering my arms look quite scabby, also I keep getting un explained bruising does anybody else get this, if so do you know what causes it or how I can treat it x

I’m doing my own research for a cure myself as I am convinced after a lot of research already that there really isn’t much help out there. You have to be your own advocate and know what you are talking about. This is how I now explain. It’s quick and easy to understand.

If you run a marathon or even if you are in an accident, your fight flight response is what it kind of is. So you ran a marathon and your body can go into severe hyperthermia and your body must cast off heat quickly. In seconds the blood can flow up to 32x normal. This mechanism is build so that it saves our lives. But with EM at 65-70 degrees the body reacts with hyperthermia mechanism in nervous system that regulates blood flow dysfunctions. It unleashes reaction as if the temp was 120 degrees. With EM our regulator sort of speak is turned off.

I got this explained by Dr. Cohen’s research and notes. It’s the best I can explain to people and I sum it nicely and short. They then understand.

I get blistering as well and have been told recently that is not “typical” of em. But then again also from what I hear there is not allot that is typical of any em case except the burning. Speaking of the burning, I used to practicaly worship the sun. I actually just moved down to a place by the ocean so I could enjoy it more a few years ago. I still love the sun, but unfortunately from afar now. When I’m flared up summer is hell for me.

Dear Ray, how bout " My Body is ON FIRE!"? FIRE FIRE FIRE!
One day I fantasized running around my house stark naked yelling FIRE FIRE FIRE! I’d of course be taken to the loony bin & get no treatment at all. So I have to get gel packs out of the freezer and strategically place them around my hot bod. Patricia
PS: Your note was old but I felt for you and hope you’ve vastly improved since then.