For the last 3 weeks my lips and tongue have been on fire . I went to the dermo and every lab came back normal . She gave me hydrocortisone but is not helping at all.
It’s soooooo painful !
Hi Robyn3,
I have experienced burning on my lips, ears, jaw and cheeks. I have also had a couple of episodes where my throat burned terribly. Not my tongue though. At times, my face was so swollen and red, it was assumed it was an allergic reaction. I also thought I had Bell’s Palsy during one episode that was severe and included severe burning of my outer ear and jaw. Thankfully, those episodes lasted no more than a couple of hours. The throat and lips can last all day though. Are you being treated? I am still bouncing to different doctors seeking someone who will treat me for EM.
Thank you! I am not sure if it’s EM or what! Sad to know it is possible for it to go anywhere on your body. I thought it was only my feet! Thank you so much for responding . Take care! Are you in the us or “across the pond?”
The good news is, my burning has been mild over the last couple of weeks. I’m hoping it is going away. But, I fear it won’t. Assuming it is just EM and not something else (I’ve been diagnosed with angioedema, but I’m not sure about that), from what I’ve read, it most commonly only effects the feet and hands. some people get it in other areas as well. I am in the U.S. Near Philadelphia.
I am happy the burning has been mild. Let’s hope it stays that way! Thank you again for responding to my question. My doctor is quite sure it is an allergic reaction to restalyn. I got filler in my lips. Apparently, people with our affliction shouldn’t put foreign stuff in our bodies! Darn!!!
Also, Dr Marisa Chang is the neurologist who diagnosed my EM. She is awesome and tries all the things mayo does. I know she is far from you but might be worth a trip out to Southern California (summer time too!!!)
Robyn,
I’m sorry I am just seeing this. I thought the site gives notification when there’s a response, but perhaps I don’t have it set right. A trip to California is more exciting than Minnesota in winter! (I had called Mayo and the earliest I could get in would be January)… I hope your lips are better? I’m starting to burn more today… boohoo! I even have scaly, cracked dry skin on my wrists/forearm (from the heat, I guess?) I knew it was too good to be true! I have an appointment in a few weeks with a guy in PA. who has worked with Erythromelalgia in relation to Autonomic Nervous System Disorders. We will see what transpires.
I am just figuring out the site too! I also have a recommendation for Dr Simon in Kalamazoo mi if that is closer. Super long story but he is sooo awesome and can get your diagnosis. Now also knows the docs at mayo and that is why I was able to get a July appointment . If you are interested let me know and I will give you his info. If you want to see dr Chang in Santa Monica I will give you her info. You can always call me too! 1-408-■■■■■■■■
Hang in there girl!!!
Robyn
Thank you, Robyn! I may decide to take a trip to one of those doctors if I can’t find someone closer to home. Doesn’t hurt that I love Santa Monica! Thank you so much!
You’ve had B6 level checked?? B6 will burn tongue, hard palate, throat into the lungs and it is not constant…but can be. You do not have to take B6 supplements to become toxic. Just a thought…
Thank you! I will get it checked!