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Thread: neurogenic rosacea -- my battle.

  1. #21
    Senior Member laser_cat's Avatar
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    PS Territorial pissing contest I was referring to -

    "
    To the Editor:*I enjoyed reading the excellent reviews of the many causes of cutaneous flushing by Sadeghian et*al.1,*2*One cause of facial flushing mentioned is*erythromelalgia. I write to suggest that the term*erythromelalgiabe restricted to patients with additional flushing of their feet and/or hands.
    I am frequently asked to examine patients who have severe facial flushing and have been given a diagnosis of facial*erythromelalgia*for many reasons: most often because the flushing is severe and painful, the condition is recalcitrant to treatment, or the patient has often used ice or iced water to relieve the discomfort. If patients have facial flushing in isolation though, I do not think that the term*facial erythromelalgia*should be used. The term*erythromelalgiashould be reserved for patients who additionally have red, hot, painful flushing of the hands and feet; patients may report involvement of the face.
    Essentially, painful facial flushing has a panoply of causes and is most often physiologic, whereas flushing of the hands and feet (erythromelalgia) often involves the face, is highly unusual, and denotes a unique*pain syndrome. Broad use of the term*facial*erythromelalgia*may also lead to neglecting all the factors that can cause flushing, as detailed in the review.1,*2
    "

    from:


    Mark D.P. Davis
    Facial erythromelalgia?
    Journal of the American Academy of Dermatology, Volume 78, Issue 5, May 2018, Pages e127
    Last edited by laser_cat; 17th July 2018 at 06:11 PM.

  2. #22
    Senior Member laser_cat's Avatar
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    "
    To the Editor:*A few predominantly facial cases of potential*erythromelalgiahave been described, but these appear to be exceedingly rare.1,*2,*3,*4*In 1 of the case reports, the condition was mistaken for other dermatologic conditions (rosacea and contact dermatitis) for years until the patient developed symptoms of erythromelalgia elsewhere.1*Another case report highlights the importance of keeping this in the*differential diagnosis*to avoid confusion with dermatologic*connective tissue disorders*that involve the face.2*As more information is published, we look forward to learning more about this entity and other*pain syndromes.
    "

    JAAD online
    Reply to: “Facial erythromelalgia?”
    Author links open overlay panelAzeenSadeghianMDaHaileyRouhanaMDbBrittanyOswa ld-StumpfMDaErinBohMD, PhDa
    a
    Dermatology Department, Tulane University, New Orleans, Louisiana
    b
    Dermatology Department, Louisiana State University, New Orleans, Louisiana

    ... I am glad the New Orleans authors stuck to their guns + made the points they did, when Mark Davis is one of the experts on EM.
    Last edited by laser_cat; 17th July 2018 at 06:11 PM.

  3. #23
    Senior Member Brady Barrows's Avatar
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    Lizzy,
    I read this entire thread and was moved to write you to commend your spirit of investigation and volunteering to let others know what you are going through. I have added Amlodipine (very low dose) to my post on Prescription and Non Prescription Flushing Avoidance. I also added a link to your struggle in my post on Neurgenic Rosacea. So when your doc "thinks of [your] case, he puts it in the category of traditional EM" in post no 4 in this thread, does this mean that EM is your diagnosis and not Neurogenic Rosacea? And thanks for posting in RF and helping others with a significant number of helpful posts.
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  4. #24
    Senior Member laser_cat's Avatar
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    Quote Originally Posted by Brady Barrows View Post
    Lizzy,
    I read this entire thread and was moved to write you to commend your spirit of investigation and volunteering to let others know what you are going through. I have added Amlodipine (very low dose) to my post on Prescription and Non Prescription Flushing Avoidance. I also added a link to your struggle in my post on Neurgenic Rosacea. So when your doc "thinks of [your] case, he puts it in the category of traditional EM" in post no 4 in this thread, does this mean that EM is your diagnosis and not Neurogenic Rosacea? And thanks for posting in RF and helping others with a significant number of helpful posts.
    Hi Brady, Thanks for your kind words Let me return the compliment around though, and say how awesome I think your passion is to promote rosacea awareness!

    To answer your q - No formal diagnosis of EM. Initially I did not pay attention to my actual diagnosis, because it seemed more like an insurance game than anything else (since root cause is otherwise unknown). I've gone back and looked through my docs' medical notes, and I have diagnoses of : neurogenic rosacea, neurogenic pain, vasomotor flushing, dysesthesia (I think to get some meds like lyrica? covered), hyperhidrosis (not really a problem, just to get the botox covered), small fiber neuropathy, disorder of autonomic nervous system. I was trying to say that, my sense is this doc seems to informally put me/his other neurogenic rosacea cases in the same category of the feet EM (that he has experience with), just in how he makes sense of symptoms and treating people. I might be reading between the lines a bit, but I don't think so, because I am neurotic enough to audio record all my doc appts and dissect to them again later :P In his medical notes, he does use the term "erythromelalgia" (as in, "to treat her erythromelalgia symptoms ..") but I do not have that formal diagnosis.

    Treatments involve trial and error with the same meds in the end. However, diagnosis might be a factor in how difficult it would be to apply for disability.

    Best,

    Lizzy

    (edit - i do have facial erythromelalgia diagnosis. I am not sure when that happened. When I stopped bringing it up to doctors? hah)
    Last edited by laser_cat; 24th March 2020 at 05:59 PM.

  5. #25
    Senior Member Brady Barrows's Avatar
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    Quote Originally Posted by laser_cat View Post
    Of interest to flushers, might be the woman in Fig 1. Oaklander has said in a lecture of hers I watched (when I’m stressed, I research obsessively :p ) that “idiopathic is latin for 'we are idiots'. if a doctor ever tells you that you have idiopathic anything, just say no.” ;)
    I love your sense of humor. Actually, the etiology of idiopathic is "from the New Latin idiopathia (primary disease), from the Greek idiopatheia, from idio-, from idios (one's own, personal) + -patheia, -pathic (feeling, suffering)." Medical Definition of Idiopathic, MedicalNet.com

    An idiopathic disease is simply "any disease that is of uncertain or unknown origin." Rosacea is idiopathic.

    Thanks for clarifying your diagnosis for me. I think you are spot on and let's keep neurogenic rosacea since that is the name of this thread and the RRDi is the only non profit organization for rosacea that recognizes neurogenic rosacea as a rosacea variant.
    Last edited by Brady Barrows; 18th July 2018 at 08:08 AM.
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  6. #26
    Senior Member laser_cat's Avatar
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    Quote Originally Posted by Brady Barrows View Post
    I love your sense of humor. Actually, the etiology of idiopathic is "from the New Latin idiopathia (primary disease), from the Greek idiopatheia, from idio-, from idios (one's own, personal) + -patheia, -pathic (feeling, suffering)." Medical Definition of Idiopathic, MedicalNet.com

    An idiopathic disease is simply "any disease that is of uncertain or unknown origin." Rosacea is idiopathic.

    Thanks for clarifying your diagnosis for me. I think you are spot on and let's keep neurogenic rosacea since that is the name of this thread and the RRDi is the only non profit organization for rosacea that recognizes neurogenic rosacea as a rosacea variant.
    Hi Brady,

    Yes I'd agree. To be clear most of this thread is me brainstorming and trying to find a way to make sense of things! There is not much medical literature on neurogenic rosacea and more on other conditions with potentially similar pathophysiology. Even with a diagnosis of "neurogenic" rosacea, I think the idea that the nerve involvement is at least as integral as the blood vessels, is something that is unfortunately lost on MOST doctors I've seen (except for pain management docs and my neurogenic rosacea derm). I usually talk to different rotating residents before my doc appts (at large teaching hospitals), and there is always some initial confusion when they realize I am trying to treat the pain/burning from my neurogenic rosacea ("So .... why did you have the lidocaine iv? For the .... neurogenic rosacea?"). It feels very disorienting if not completely invalidating, to have a chronic pain condition, and not have that evident in that diagnosis (why I think I was later given a diagnosis of "neurogenic pain" ... but I don't really know anymore!). However, the idea that neurogenic rosacea is a chronic pain condition, was in fact the intent of my "neurogenic rosacea" derm (who helped define that subtype).

    I do think the line between neurogenic rosacea and EM is blurry, especially when there are documented cases of facial burning/flushing being followed by the development of hand burning/flushing years later for example, and it is only then that the EM diagnosis is formally given. Whether this suggests similar pathophysiology, maybe, but definitely more information/research is needed.

    I wonder how many people out there who are experiencing disabling facial/trunk/hand flushing/burning, would also test positive for non-length dependent small fiber neuroathy, just as most people with EM test positive for length dependent small fiber neuropathy, and if this could change their treatment paths for the better.

    I like Oaklander's tongue-in-cheek translation better ;)
    Last edited by laser_cat; 18th July 2018 at 06:58 PM.

  7. #27
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    That is quite a journey. It's really inspiring, in that you just have to keep looking, keep working towards your best result. Thanks for sharing this.

  8. #28
    Senior Member laser_cat's Avatar
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    Quote Originally Posted by RebeccaBrowne View Post
    That is quite a journey. It's really inspiring, in that you just have to keep looking, keep working towards your best result. Thanks for sharing this.
    Thanks Rebecca, I believe there is always hope

  9. #29
    Senior Member Brady Barrows's Avatar
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    In my post on Rosacea Theories Revisited I mention the Trigeminal sensory malfunction theory which links the inflammation of rosacea with the the trigeminal nerve which is responsible for sensation in the face that "can result in craniofacial pain, including migraine, temporomandibular joint pain, and trigeminal nerve pain." This may be related since the nervous system has been implicated with rosacea for some time now, i.e., a paper in 2004 explains, "We're clear that blood vessels are dilated but don't know if that comes first or later." As you have pointed out in this thread, the nervous system is obviously involved since they regulate the vessels so the vascular theory is subserviant to the nervous system. There is so much we know about rosacea which shows how much we don't know about rosacea.
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  10. #30
    Senior Member laser_cat's Avatar
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    Quote Originally Posted by Brady Barrows View Post
    In my post on Rosacea Theories Revisited I mention the Trigeminal sensory malfunction theory which links the inflammation of rosacea with the the trigeminal nerve which is responsible for sensation in the face that "can result in craniofacial pain, including migraine, temporomandibular joint pain, and trigeminal nerve pain." This may be related since the nervous system has been implicated with rosacea for some time now, i.e., a paper in 2004 explains, "We're clear that blood vessels are dilated but don't know if that comes first or later." As you have pointed out in this thread, the nervous system is obviously involved since they regulate the vessels so the vascular theory is subserviant to the nervous system. There is so much we know about rosacea which shows how much we don't know about rosacea.
    Awesome, thanks for pointing that out here!

    By the way, there is a new anti-CGRP drug Aimovig (for migraine) that just came out in the US a few months ago. I've brought it up to my pain docs before (I am also prone to migraine), and they seem game to try but we ended up moving in the direction of lidocaine iv's. However, I am keeping an eye out in other groups for whether Aimovig proves helpful for co-existing pain conditions on top of migraine. If I even have a headache, it's like it compounds the flushing/burning symptoms of neurogenic rosacea. It's sorta interesting, if it weren't so maddening haha.

    In an age where technology is super advanced/impactful in some areas (virtual reality, cryptocurrencies, and of course the 360 degree selfie :p) I'm amazed at how little is known about some of these medical conditions conditions (you'd think they can just ... look in there and figure it out lol). I think neurogenic rosacea is too new and too rare for randomized controlled trials to take place yet. I'm hoping that while we wait for them, these groups/forums/social media/irosacea/etc can pool together information and patient experiences, so that people can feel more in charge of their health (how annoying this is for doctors, I'm not sure :p) and less alone.

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