Hello everyone. I just wanted to say how glad I am to have found this site and I hope to gain knowledge from everyone's experiences.
I have very recently been diagnosed with EM, and am still waiting some other test results as well. Had a biopsy done to try to determine if I have an auto-immune disorder or vasculitis as well as the EM.
Follow up with Dr. on Tuesday, and then they are scheduling me for some more tests with more specialists.
So far nothing is alleviating the pain and burning. Have been on Gabapentin for only a week but so far no relief. Hoping it helps as I increase the dosage.
Today has been a particularly bad day...the burning has been non-stop, all over, including my face. Husband is putting the a/c in the bedroom shortly to help me. Had to take a long car ride earlier with the a/c on full blast just to take the edge off. Thinking about doing it again.....
I just wanted to say that I appreciate all of your input and advice, and I wish you all the very best in your own personal fight with this.
I have found sometimes nothing seems to help but cooling the effected areas and in your case your whole body if need be. There are many different treatments that do offer some relief but it’s a trial and error approach as different treatments help different people. I hope you find the right one for you b soon. Hang in there!
Take care,
Alina
I feel for you I really do but hang in there and learn what you can from members here. They are a wonderfully supportive bunch of people.
Bedtime for me here in London UK. I hope the rest of your day goes OK and you get the air con in place in time for the night.
Nel
Thank you both. Just got back from a long ride in the car with the a/c as high as it could go. Hubby just put the a/ in the bedroom and I have it cranking...
Greetings, Betsy, and welcome. I assume you've tried aspirin? If not, you might try it. There's a wide range of opinion about which cases aspirin helps (generally, secondary EM more than primary), and how much to take. But I've had good luck with it, as have many other people. In any case, here's to air conditioning!
Thank you for the welcome. Yes, have been taking 650 milligrams 2 to 3 times a day per the doctor, but have not found any relief from it. Will keep taking it and see what he says at my follow up this Tuesday. Glad you have found some relief from it!
Yes, thank goodness for air conditioing!! Have myself locked in my room with it cranked up to high right now! It was 90 here today and my symptoms were terrible. The a/c is taking the edge off.
I'm only guessing that I may have EM, and certainly don't have the experience and knowledge that the members here have, so anyone please correct me if this is bad advice....
...but when my feet flare up I find some decent relief in wearing wet socks. I work from home, and my symptoms are less severe than many but my feet do flare up from heat/standing, and unfortunately, I am a seamstress and spend half my day standing/cutting fabric, and the other half sitting with my foot on a warm machine pedal. While I love what I do, there are many days my feet flare and I still need to be able to work through it. I was looking into cooling socks, or gel pack booties, and finally thought to try simply putting on wet socks. So far they do provide some relief, and having a fan run at my feet as well does seem to help keep the flare ups at bay.
I have no idea if this is safe or recommended though, so again, please chime in if this is terrible advice.
I can't say with any certainty if wearing wet socks is harmful. I have had to be wet in general to work back when I was still trying to work and haven't had any problems from it. I am sure if you wore wet socks 24/7 it could hurt your feet because the constant wet feet reek havoc on your skin. Think about your skin after spending too long in the water when your skin get wrinkly and soft.
I used to be a flight attendant before I finally had to give it up due to EM. During the 6 months I tried to keep working I had to take drastic measures to tolerate the temps in the airplane. I say tolerate but it was still awful!!! I know most people would say airplanes are often too cold but I worked for a small airline in small aircrafts that just don't have the same air-conditioning and what we did have often wasn't running on the ground between flights.
I would poor water in my shoes and wear a wet cooling vest under my uniform. I would have to poor water down my shirt and in my shoes as they day went on and they dried out. When it got really bad I had to put ice down my shirt. I know I know the ice was a bad idea and when I had to use it by the end of the day my chest would have red bumps all over it. It was that or I couldn't walk and it wasn't every day just when we were flying places particularly hot or the AC wasn't working properly.
Any way after walking around wet 4 days a week for 6 months I haven't suffered any harm. I am in no way saying it's a good idea just that it didn't hurt me. I am so happy I gave up the job and it feels so good to be dry again!!!
Take care,
Alina
violet976 said:
I'm only guessing that I may have EM, and certainly don't have the experience and knowledge that the members here have, so anyone please correct me if this is bad advice....
...but when my feet flare up I find some decent relief in wearing wet socks. I work from home, and my symptoms are less severe than many but my feet do flare up from heat/standing, and unfortunately, I am a seamstress and spend half my day standing/cutting fabric, and the other half sitting with my foot on a warm machine pedal. While I love what I do, there are many days my feet flare and I still need to be able to work through it. I was looking into cooling socks, or gel pack booties, and finally thought to try simply putting on wet socks. So far they do provide some relief, and having a fan run at my feet as well does seem to help keep the flare ups at bay.
I have no idea if this is safe or recommended though, so again, please chime in if this is terrible advice.