Invisible Rosacea Burning -- White Face but severe burning

[drnase]

Hi group,

Many moderate to severe rosacea sufferers experience burning while they flush. The blood vessels release heat and inflammatory substances that act on sensory nociceptors (pain receptors) and this signals back to your brain........burning. These nerves can then stay activated for quite some time after the flushing is gone.


Now, one of the most frustrating things for rosacea sufferers is experiencing burning sensations chronically without flushing (invisible burning syndrome). We thought in the past that most of this was due to chronically inflammed sensory nerves. But recent evidence indicates that sympathetic nerves in the face "communicate" with sensory neurons in the face. Thus activation of sympathetic nerves during stress, heat, foods, excertion, etc. can selectively activate sympathetic nerves which release norepinephrine onto receptors on sensory neurons and trigger a burning reaction without any visible signs. More frustrating is that low grade constant sympathetic stimulation can result in days/weeks of chronic burning sensations. These are the folks that want to just jump off the largest building they can find.

I will try to get an updated article on Neuropathic Rosacea published and get it submitted to a Neurology based medical journal because they are ideally trained for this ........ but dont know it yet.

I hope at the very least, this helps explain the disorder a little better, make it known that this is "not in your head" and better educate you guys and gals so that you can better educate your physicians.

[snwbdrloco84]

Hi Dr. Nase,

I just have two quick questions for you. After eating certain foods sometimes my face feels warm(usually doesn't last more than a half hour), but when I look in the mirror it is quite pale. Could this warm feeling become a burning sensation over time? Am I doing permanent damage(aggravating the underlying disorder) even though I do not see it yet on my face?

Thanks,
Ray

[drnase]

Ray,

Its only a problem if you snowboard.

Honestly, many can do this for years without a problem. Just watch to see if the intensity or duration increases -- that will be your warnig sign.

Foods are more of a parasympathetic nerve response.

[prryjones]

Hi all,
I don't normally post about my own sxs, but just to add to the data....
Speaking for myself...there seems to be no correlation between my burning sensations and degree of redness. As a matter of fact, many times my worst burning sessions are during stress, but my face is at it's best (pale). Conversely, when my face is at its worst, many times it is cool and feels quite normal.
This is not the case with my ears, however, which only feel "hot" when they are red.
An interesting point is that no one in my family with rosacea (and there are five) has any sensations of burning, hot, pain, etc. Only me. I am also the only one who has used isotretinoin or who has been blistered by IPL txs.
Rosacea is indeed a strange animal.
Perry

[fut]

I'd like to add on to this.

I feel after IPL, the burning is less frequent but the percentage of "invisible burning" situations has increased. Perhaps this shows the fact that, yes, the weak blood vessels are gone but the overactive sympathetic nerve system is still there.

Regards,
George

[Spav]

Fut,

Could be or it could just be the mind playing tricks. Like for example people who loose a hand but can still feel their fingers.

[tobanonymous]

Will IPL help in this situation if there's burning but no redness?

[googoo]

Dear Dr. Nase,
I experience burining sensations without visible signs of flushing or redness. This is the first symptom that I noticed with this disease. My skin was also extremely sensitive. I could not use anything on my face. I saw 3 dermatologist before I finally found one who diagnosed me with rosacea.
Isotretinoin is the only drug that eliminates the burining sensations that I have. Even with this drug, I still have to aoid certain triggers that can exacerbate the burning.

[nataljaoo]

This is good and at the same time scary to read..
I wondered why I feel this constant pain and burning in my face, even if I am pale (veeeery incidental though, am usually red and flushed, snif...).
Reading that there is a scientific explanation for it is great, but I wonder how we can get rid of this depressing pain in the end.
I'm planning new IPL treatments in the US this year, with the Lumenis One machine, and am praying and hoping that it will do something for my rosacea, but what if this neural pain stays after all? It's all so scary and mysterious to me.

best wishes, natalja

[matt]

After my first IPL i still felt like i was flushing and burning even though i wasn't. :(

[googoo]

Natalga,
This is the main concern that I have regarding IPL as a possible treatment for rosacea. I'm also afraid that IPL will exacerbate the neural pain.

[drnase]

In many cases, laser treatment helps Neuropathic burning sensations to a certain extent. Two recent articles published showed that after multiple laser treatments on the face there were decreased numbers of pain fibers. This correlated with decreased subjective pain by the patients.


The key is to keep the energy to moderate levels and perform multipass procedures. The pulsed dye lasers you have to be careful of because much of the heat goes to the skin and can aggravate the nerves. Keep it in the safe zone with energy and it should improve the symptoms.......or at the very least not worsen them.

[nataljaoo]

Hi Dr. Nase,

Good to read that there actually is something we can focus on: moderate energy levels while undergoing IPL. It is sometimes difficult to get a clear image of what this is. For instance: when I got IPL in the UK, the doc said that the 560 filter double pulse from the Quantum machine was veeery moderate and the mildest setting he could use. It went wrong, made not only the flushing, skinsensitivity and overall redness much worse, but also the buring, even when I'm pale. (But it was only one treatment though). Now I've heard from another IPL treater that this actually is a pretty strong setting according to him and that it blasts a lot of heath in the upperskin. He proposes starting with the deeper feedingvessels and only end with this 560 filter when the skin is much more improved and stronger.
Well, you know about these different approaches and posted about it before. Just trying to say it is sometimes difficult to get even a clear image of what moderate energy levels are... But it is so good to hear that moderate treatments won't aggrevate neuropathic burning and most likely will have a positive affect on it!

best wishes, Natalja

[thursday]

I get very confused about terminology - can someone explain please? Dr Nase said:

In many cases, laser treatment helps Neuropathic burning sensations to a certain extent. Two recent articles published showed that after multiple laser treatments on the face there were decreased numbers of pain fibers. This correlated with decreased subjective pain by the patients.

The key is to keep the energy to moderate levels and perform multipass procedures. The pulsed dye lasers you have to be careful of because much of the heat goes to the skin and can aggravate the nerves. Keep it in the safe zone with energy and it should improve the symptoms.......or at the very least not worsen them.

when he says "laser treatments", is that the same thing as IPL or different? When he says "The pulsed dye lasers you have to be careful of ..." is that IPL? I read into this that he is saying lasers are good for the invisible pain flushing and IPL isn't but have I completely misunderstood?

confused

[RachelRose]

I'm not sure if "laser" includes IPL. I am having IPL without laser and I am ever so grateful for what it has done for me. However, it has not helped the neural burning at all. Maybe I need 1064 YAG laser to see if it will help with the burning?

I have two different kinds of burning--sunburning and then this crazy jittery chemical neural burning. It is the latter type that I associate with the nerves. It is in my eyes, my face, my scalp.

I just try to stay calm and breathe. For now, I am running the avoidance plan--don't get too happy, too sad, too mad, etc. because that sets off the burning and I don't want to create permanent damage. This seems to keep the burning to a minimum although like everything else with rosacea it gets worse, not better. Until the cure comes along. Two years tops. Until then I am learning the joys of solitude.

[thursday]

Do you get sunburn even through sunscreen?