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,
Alina