Testimonials
Living with erythermalgia means confronting a rare, painful, and often invisible disease. This page gives a voice to the people affected, as well as to their loved ones: to share experiences, recognize themselves in others, feel less alone, and create connections.
Every testimony matters. Whether it comes from a patient, a caregiver, or a close relative, it can provide comfort, information, and help raise awareness about the reality of the disease.
✉ Share your story
Do you live with erythermalgia, or do you support a loved one who is affected (spouse, parent, friend, caregiver…)? You can send us your testimonial to help other people and contribute to raising awareness about this rare disease.
You can also, if you wish, simply share the names or contact details of specialists who are familiar with erythermalgia.
💬 Excerpt of an experience
"Before my diagnosis was made, I went through a long period of medical wandering. The pain and redness were constant, and I often had to prove that what I was experiencing was real."
Inès - Patient with facial erythermalgia
👣 Testimonials
Alexandra - Patient with erythromelalgia affecting legs and hands
"I have been living with burning pain in my legs, and sometimes in my hands, since my pregnancy. At first, no one believed me, and some people even mocked me, telling me that 'it was all in my head.' My legs become red, swollen, and the pain is sometimes unbearable, to the point where I feel like I want to cut them off.
Today, I take morphine, 500 mg aspirin, Namuscla, and a cream based on lidocaine and amitriptyline. To relieve my flare-ups, I have put in place many avoidance strategies and a toolbox: I wear compression stockings when I can, elevate my legs, walk barefoot on cold floors regularly, take lukewarm showers, and sleep with a fan.
I am followed at a pain management center, where I was able to try RTMS and TENS sessions, but unfortunately they had no effect on my flare-ups. All classes of medications have also been tried, with very little results.
Every day is a battle, but I keep moving forward, taking care of my son, going to work when I can, and searching for solutions to live with this invisible disease."
Brigitte - Patient living with erythromelalgia of the feet and hands
I have been living with erythromelalgia affecting my feet and hands since 2018. It is associated with neuropathy, restless legs syndrome, osteoarthritis, and crural neuralgia.
On a daily basis, my feet burn intensely, especially when the weather is humid, and the pain can be severe even when walking short distances.
I use a cane or a walker to get around, and I can only wear very soft, flexible shoes. At home, I prefer soft slippers to reduce pressure and discomfort in my feet.
After many medical tests, I was prescribed a compounded cream containing amitriptyline, which helps with neuropathic pain and keeps my skin moisturized. I also take pain-relief and anti-anxiety medications.
I consulted a pain management center and tried a TENS device, which provided immediate relief but caused a painful rebound the following day. I also chose not to proceed with the implantation of a neurostimulator due to the potential risks involved.
I tried 30% CBD oil without benefit, but I have found some temporary relief with magnesium foot baths and gentle exfoliation in the shower.
Despite everything, I try to remain positive. I enjoy reading, listening to music, and appreciating the small pleasures of everyday life.
I want to share my story so that others affected by this condition feel less alone and to help raise awareness of this rare disease.
🌟 Feedback from Healthcare Professionals 🌟
💬 "Thank you for this initiative and congratulations on creating the association!"
🏥 Hôpital Ambroise-Paré – 🩺 Internal Medicine
💬 "Congratulations on this wonderful initiative and for sharing it with us."
🏥 Hôpital Tenon – AP-HP Sorbonne Université – 🩺 Dermatology / Allergology
💬 "I congratulate you on your commitment and dedication."
🏥 CHI Poissy-Saint-Germain – 🩺 Internal Medicine
💬 "Thank you for keeping me informed about the creation of this association."
🏥 Centre Hospitalier Universitaire d'Angers – 🩺 Neurology / Rare Diseases
💬 "We have added your association to our database."
🏢 EURORDIS – Rare Diseases Europe
💬 "Your association has been successfully created and will be visible on the Orphanet website starting next week."
🏢 Orphanet – Rare Diseases Database
"Every piece of feedback matters and helps us raise awareness about this invisible condition — thank you to everyone!"