Sascha Gallardo - April 1, 2022
You might have never heard of it, much less know anyone who suffers from it because it’s a rare disease.
Only about 1.3 in 100,000 individuals are known to have erythromelalgia [1], also known by the name “man on fire” syndrome.
It makes patients suffer from burning sensations, mostly in their feet, but can also affect other parts of the body like the hands, arms, face, and legs. Other symptoms include redness, pain, and swelling in the affected areas.
The experience of each patient can be very unique. Some of them get mostly mild symptoms like tingling and pins and needles and only once in a while. For others, however, their symptoms are quite debilitating and don’t seem to subside. In some cases, they worsen over time.
The flares can be triggered by a lot of things, which usually involve an increase in body temperature such as exercising, eating spicy food, wearing tight fitting shoes, and taking a hot bath. Aside from these, emotions and stress can also trigger flares.
At present, there is still no cure for erythromelalgia. Patients usually make use of different cooling methods, a popular one of which is submerging their hands or feet in water. It should be kept in mind, however, that this can cause injuries and it is best to seek medical advice before trying.
Other cooling methods include positioning a fan near the feet and placing gel packs in the affected areas.
The different types of medicines also have different effects on patients. While some patients experience regression, some of them do not see any effect from the medications prescribed to them. Others, however, may have experienced improvements, but could not tolerate the side effects. Some of the types of medicines prescribed to patients include painkillers, antidepressants, medicines for blood pressure and epilepsy, and supplements. [2]
Living with erythromelalgia can have a huge impact on a patient’s life. They have to make a lot of adjustments in their day to day activities to manage the symptoms, deal with the pain, and find the treatment that would work for them. It would be a great help for patients if more effective medications would be discovered. Having schools, offices, institutions that are sensitive to their needs would also make significant improvements to their lives.
It may seem a small contribution, but simply sharing information about erythromelalgia and its impact on the lives of patients and their families can lead to more people advocating for them. Share this blog on social media and help spread awareness about erythromelalgia.
NOTES:
[1] NORD (n.d). Erythromelalgia. Erythromelalgia - NORD (National Organization for Rare Disorders)
[2] NHS (n.d). Erythromelalgia. Erythromelalgia - NHS
If you or someone you know is affected by erythromelalgia, we invite you to join our Living with Erythromelalgia community.