New/Confused/Gathering Info

I hope hope for my friend to take this over once we get a firm diagnosis.

It started with his ears. They went so red hot. At times they are really warm and almost, if not, sweating. Sometimes they will really hurt and other times just pulsate. Pulsating head is common. Dizziness and facial pain followed. Light redness covers the face. It burns hot at times. He feels like it’s in his sinus. Is that possible? My friend also claims to feel almost an electric feeling in face and nerves in head. It seems to have progressed. The hands ache more than burn but will burn. Hurts to use them and light redness on fore arms during flares. Pins and needles with legs more than burning. Deep ache and cramps in legs can come and go. Feet begin to burn after walking too much. Bottoms will be brigt red but nothing like the ears. The upper chest has bright red always - goes to the shoulder. That hurts when the neck is burning. The neck can be really bad. Goes from behind the ears to the neck and its a deep pain. Like muscle. Voice changes. I’m sorry to be all over the place. I will tighten this up. He was reacently tested for neuronal anto-bodies and high a level on a specific test. I think it mainly has to do with cancers and automatic issues. I am not clear at all. I don’t have many pictures.

Hello Edward.

It is so kind of you to search for help for your friend. This does sound as if it could very well be EM. The electric feelings , cramping and aching are common sensations that can accompany the burning. You can have it all over as it sounds like your friend has. Has he tried cooling the burning areas ? If it is all over he could benefit from cooling his whole environment with AC if possible. I get it all over my body and have found significant relief by keeping my house between 58 and 63 degrees. He will have to experiment with temperatures to find what works best for him. If he is like myself he will still get flares of burning especially with activity even in cold environments but they should be less frequent.

I hope this helps some.

No problem Edward. I’ll be back on in a few minutes when I am back on my computer so I can see the pictures better. I’m on my phone now.
I’ll be back in a flash!

Hello Edward. I took a look at the pictures and you can definitely see the redness. I know they are probably much worse in person. I know my pictures never do my examples justice.

As far as my opinion goes this could be EM then again it may not as well. There are other conditions that could cause this redness . One good test is does the skin feel warm when this happens. does it get better when cooled and worse with warmth , stress and or activity? Has your friend spoken to a doctor about the possibility of EM?

Dearest Edward,

Just eyeballed your photos and can clearly make out pretty widespread livido, which is a common symptom in EM. However, I agree with Alina that (a) photos fail to offer true representation of a flare, (b) red flares/livido can be seen in many differential diagnoses such as chronic regional pain syndrome, peripheral neuropathy, hives/allergy etc. As your friend is currently under medical care for their autonomic problems it would be prudent to raise all concerns immediately. If this is EM, an official diagnosis would open the portal to firstline treatments- in the case of EM these tend to be gabapentin, aspirin, effexor.

Whilst the pathophysiologic mechanisms of erythromelalgia are poorly understood types of abnormalities observed include vascular, neurophysiologic, and autonomic function. It is not uncommon for EM'ers to develop increasing autonomic dysfunction e.g. digestive issues, sweat, blood pressure etc. prior to presenting the classic EM lobster flares. EM can best be described as a 'heat allergy' - heat induces a flare (although cold can also induce in severe cases). Are your friends flares triggered by heat?If you and your friend could look under our toolbox under information for new members you will find lots of information, video and research that may help you in terms of examining possible EM symptomology.

Neuronal antibodies- are you referring to a paraneoplastic neurological disorder? Do you mean your friend has symptoms such as difficulty with balance, difficulty swallowing, loss of muscle tone, slurred speech, memory loss, vision problems, sleep disturbances. Is your friend receiving any treatment or medication?

I am so terribly sorry your friend is in so much pain. But we often forget how very distressing it is for loved ones watching from the sidelines- bless you ! Please let us know how best we can support you- research articles, links, Dr's names from our directory, for example.

Thinking of you both

God bless


Hi Edward. I read in your previous post how you’re not sure if it can effect most of his body. If you go to my page and look at the pictures you will find it can effect most of the body. I’m not sure if I have every part of the body that is effected by EM in my pictures but I’m sure there are enough different body parts burning that you will get v the picture. … get the picture! Ha! That wasn’t on purpose I swear :slight_smile:
It sounds as if heat definitely makes him worse. I’m not sure if I missed you saying so but has he tried cooling the areas effected? Fan , chilli pad , Chillow …Chillow is perfect because it’s a cooling pillow …great for his ears. He can also try and spritz water on then have fan on if the fan alone isn’t enough. I think I mentioned before just cooling the whole house as cold as you can get it. Hopefully you he has air conditioning. If your friend tries any of these tactics will you be sure to let us know how it went. We are all here to help each other and it’s always great to hear someone has been helped.
Please let him know we are all here for him and you of course. I can’t say it enough. . You are such a good friend.

Hi Edward,

EM affects most of my body - different parts in diferent flares. My neck too, can be the most painful part of my body in a bad flare. It will also hurt, ( increased sore burning feeling), when I turn my head. During my worst flares my hair moving on the skin of my neck can feel like it is msking tiny little cuts into my skin - sort of like paper cuts. Although my sister cut my hair yesterday in a far too short bob (not an attractive look on me or really anybody). I was regretting the haircut until I realized that my hair cant brush against my skin on my neck -anymore so that's a problem solved for my worst flares, hopefully.

Clothing on that area is a miserable experience.

my pain description has changed in regard to bad flares clothing still feels like it is sandpapering my skin but elsewhere it is a 'chinese burn' type of burning. Like my skin is being twisted a bit and is burning.

I also get the pressure redness when leaning on something. I will also have the red ear and half face redness where my head has been lying on the pillow. I also will get it in places where one part of my body rests on another. For example, when I uncross my legs after sitting I will have red blotches that are hotter to touch then the rest of me, those blotches will feel smoother than the rest of my skin and will be very slightly raised. This has been mistaken for urticaria a number of times and I'm not convinced that this particular pressure redness isnt urticaria. I have just restarted cyproheptadine and I think that if it is urticaria as well as EM then the urticaria might improve with the cyproheptadine.

I think you mentioned your friend had autonomic problems? I have POTS, a form of dysautonomia - dysfunction of the autonomic nervous system. The vascular specialist who disgnosed me with POTS, diagnosed EM at my first consultation with him. According to the letter he sent back to the referring doctor, I had given a clear discription of erthyromelalgia at my first appointment with him. I didnt now there were such illnesses as POTS and EM before I saw him.

Sometimes I can be bright red and burning, sometimes just pink and stil burning just as badly as when I am red. And I can have burning when there is no redness too.

When I read your first post I thought your friend and I had similarities in regards to redness, where it happens, how it looks. But perhaps my descriptions will be actually different from the way your friend looks when flaring and how he feels. I am really tired at the moment and my concentrstion is bad and I was unable to study your post to closely. Its a bad night and I am finding it hard to read and concentrate. Excuse me, if I misunderstood your descriptions of your friends symptoms. And excuse all types. This small samsung tablet I am using makes it hard to type.

welcome to the forum. :)