I’m not a doctor nor do I play one on TV, but I do sometimes play one on Google. And due to recent events, I feel like my Ph.D. in Googling just changed and possibly saved my life.

In honor of rare disease day, I’m finally sharing my story of something I’ve been going through for over a year now. I’ve never been someone who likes sharing what they’re going through while they’re going through it. However, I have a feeling this may be something I’ll be going through for a while.

For the longest time I’ve had the strongest heat intolerance and over the past five years or so it’s only become worse. I’ve always told people that when I get too hot, I feel as if my whole body is shutting down. I feel weak, tired, short of breath, and generally just don’t function as well. Though my inability to tolerate heat has always been an annoyance and inconvenience, I didn’t think much of it until my body began to react to heat in such a severe way. 

Last year I developed a mysterious condition that would always occur whenever my body temperature even slightly increased. This condition would cause my right hand & fingers to periodically turn bright red, hot, & literally feel as if they are on fire. I can’t even explain the amount of blazing heat I feel during one of these episodes. But not only will my hand get hot & red, my fingers often swell, my fingertips also have sharp shooting pain, and my hand itself will often get shaky, numb & tingly.

These flareups are also sometimes accompanied by a headache, dizziness, sudden tiredness, or just temporary loss of cognitive function. And though the flares started with just my right hand, it’s now occurring in my left hand, toes, & even sometimes my knees. The only thing that helps relieve the pain is to be in a cool environment and to cool down with ice or cold water. To sum it up, it has not been fun and has affected my daily life in many ways.

Until recently, I didn’t even have a name for this bizarre & painful condition. I went to my doctor numerous times for it but he didn’t have any idea what it was or how to treat it. He asked the logical questions such as if I had come into contact with any chemicals at work or if I was using a new lotion. I told him no but it was difficult explaining to him the amount of pain and burning I was experiencing from this.

I remember one appointment I told my doctor that I felt as if “Neurons in my body were misfiring”. I’m not sure if this statement made me more or less believable, but it somehow was the best way to explain how I felt. But despite my pictures and descriptions, we couldn’t come to a diagnosis and I always left my appointments feeling defeated and just hoping this condition would disappear as mysteriously as it appeared. There were days when I questioned my sanity and wondered if my anxiety had the power to cause this extreme and bizarre reaction in my body.

As months went on and the pain and burning from this continually got worse and happened more frequently, I became more confused and concerned as to what this was and what was causing it. Finally, one day while aggressively Googling my symptoms, I stumbled upon a picture from a tweet that gave me answers. The condition that has been terrorizing me for over a year is called erythromelalgia. 

Erythromelalgia (also known as Man on Fire Disease) is a rare neurovascular condition that causes burning pain in the feet, hands, face, ears or other parts of the body. Heat, stress, exercise, alcohol, and spicy food are some of the many triggers of this disease. Erythromelalgia is said to affect fewer than 2 out of every 100,000 people. Though EM can exist on its own, it is often caused by other illnesses (autoimmune disorders, small fiber neuropathy, blood cancers, etc). Unfortunately, there is no cure. But there are ways to manage it by avoiding triggers and by treating any underlying conditions. 

erythromelalgia

Once I brought all this information and pictures to my doctor he took one look at it and excitedly yelled, “OMG, that’s it! Damn girl, you just diagnosed yourself!” After a year of silently suffering from this condition, those words were some of the most validating and comforting words I’ve ever heard.  My doctor then proceeded to do a Google search to learn more about a disease he’s never heard of. Erythromelalgia is supposedly so rare that many doctors aren’t trained to recognize it. Thankfully, my doctor was open to my research (aka my late-night Google searches) and confirmed erythromelalgia as my diagnosis. Now, it’s on to the journey of figuring out what’s causing it and creating the best treatment plan. As I’ve had a variety of weird symptoms over the years, I’m hopeful that it’s all going to finally connect and my overall health will improve. 

While I wish the diagnosis process was easier, faster, and less frustrating, I don’t blame my doctor. My experience is a result of a flawed medical system. Sadly, most doctors have limited to no training in recognizing rare diseases. It’s unfortunate that many people suffer from unknown ailments because medical practice tends to focus on well-known and profitable diseases. My doctor even said that erythromelalgia is an “orphan disease” which means that it’s so rare that there isn’t a large enough market to create cures or awareness for it. I’m so thankful for @rollwthepunches on Twitter for sharing her story and her pictures. If I hadn’t seen her tweet I may have never figured out what was going on with my body. 

I’ve learned a lot from this experience and one of the most valuable lessons I’ve learned so far is to have the courage to speak up for yourself. It’s so important to be your own advocate. For a quiet-natured person, I sure can raise hell sometimes. If you’re experiencing mysterious or undiagnosed health problems, I encourage you to do your own research, trust your instincts, and raise hell if you have to. No one knows your body more than you do.