Facial Erythermalgia

"Before this diagnosis was finally made in 2023, I went through a long period of medical wandering. For four years, my symptoms were interpreted differently: rosacea, hives, couperose, and sometimes even a psychosomatic reaction.

Between 2019 and 2023, I consulted about 30 doctors, searching for answers. In 2023, a doctor finally made the diagnosis: facial erythermalgia. He explained that there were only 5 to 6 known facial cases in France, that there was no established treatment, and that I would, in a way, be my own test subject.

Putting a name to my disease was a relief: I wasn't making it up, I wasn't crazy.

Many doctors had tried treatments thinking they were doing the right thing. I followed heavy protocols, often without real conviction, because something had to be "tried." I was prescribed antibiotics, antihistamines, topical treatments like Rozex or Soolantra, Ivermectin, and even laser sessions. None of these treatments improved my condition. I also tried some alternative medicines: fire cutters, acupuncture, kinesiology.

On the contrary, some caused many side effects: fatigue, discomfort, worsening of symptoms, general imbalance. With each new attempt, hope was reborn, then fell again. This succession of inappropriate treatments left traces, both physical and psychological.

The pain, however, never disappeared. The burns, excessive heat, and redness of my face are still part of my daily life. To try to limit flare-ups, I had to implement many restrictions and adaptations: no duvet or pajamas at night, elimination of hot meals and alcohol, total stop of sports, giving up trips to hot countries, constant vigilance regarding heat, stress, or temperature variations. These adjustments, which may seem trivial, actually represent constant deprivation and permanent adaptation of every moment of life.

This disease has profoundly impacted my emotional life. Living with chronic pain visible on the face weakens self-esteem. You end up doubting yourself, withdrawing, anticipating others' judgment. Facial erythermalgia isolates, slowly but surely.

This illness does not only affect patients; it also deeply impacts their loved ones. My husband has become my caregiver. He accompanies me to every medical appointment, supports me through moments of discouragement, and shares the weight of this journey with me each day. 

Professionally, I had to reduce my activity. My work pace was no longer compatible with the pain, fatigue, and treatments. This reduction is not a comfort choice, but a necessary adaptation to the disease. Yet it remains difficult to explain, because the disability is invisible to others.

Isolation is also fueled by those around you. Many relatives do not genuinely take an interest in the disease. Not out of lack of affection, but because chronic pain is disturbing, or because it is difficult to understand. Hearing regularly "you look fine" or "it's not serious" ends up weighing heavily.

Today, I continue medical follow-up to try to relieve my symptoms, with Carvedilol (beta-blocker – 12.5 mg/day), Venlafaxine (antidepressant – 75 mg/day), 6 synthetic cannabinoid capsules (CBD), and I am currently participating in a trial of rTMS sessions. Heat, combined with some treatments, also causes significant eye dryness, which forces me to use moisturizing drops (Vismed Multi) several times per week.

Some treatments, like Mexiletine or aspirin, did not work for me. Even if the relief remains minimal, I continue to fight so that this disease is better recognized and that one day an effective treatment finally sees the light of day.

It is to give meaning to this journey that I created the association Les Brûlures Invisibles: so that patients are better guided, to avoid years of inappropriate treatments, and to remind everyone that behind redness, there can be intense and disabling pain."