Story about Erythromelalgia .

The end of my career and social life

Dec 12, 2017

By: wen

Year Condition Began: 2012


I first began noticing problems with heat in 2010 but it wasn't until 2012 that it became a really big issue for me, so much so I was unable to work or socialise with family and friends any more as I was in so much pain. My cheeks swelled and became very inflamed. They were a deep red/purple colour and extremely painful. I had no idea what was wrong with me. I was referred to a dermatologist who diagnosed me with rosacea. However, I became so bad I ended up in hospital as the doctors thought I had erysipelas, a serious bacterial skin infection, which of course turned out not to be the case. For the next two years I went all over the country looking for some one, a doctor, to help me. I met many weird and not so wonderful doctors during that time who suggested various treatments. Some, like laser, made things much much worse. I became so bad that I was no longer recognisable. I had solid edemas on my cheeks and ulcer/blister like sores that were excruciating. I was desperate. I was eventually referred to prof chu at Hammersmith hospital in london. He didn't really know what was going on with my face but he put me on a combo of drugs that literally changed my life. The flaring calmed down and my skin began to slowly heal. My tolerance to heat has gone up somewhat too. It hasn't been a cure but I now have half my life back. I still can't work but I can go out and about during the day now. Night time is still a challenge for me unfortunately but compared to how it was my flares are mild.

Know someone who should read this story? Share it

0 comments

Login or register to leave a comment


Latest progress of Erythromelalgia

What are the latest advances in Erythromelalgia?

Erythromelalgia advice

Which advice would you give to someone who has just been diagnosed wit...

Do I have Erythromelalgia?

How do I know if I have Erythromelalgia?

History of Erythromelalgia

What is the history of Erythromelalgia?

Erythromelalgia causes

Which are the causes of Erythromelalgia?

ICD9 and ICD10 codes of Erythromelalgia

ICD10 code of Erythromelalgia and ICD9 code

Is Erythromelalgia hereditary?

Is Erythromelalgia hereditary?

Erythromelalgia prognosis

Erythromelalgia prognosis