I look at the calendar and see that May is almost over and summer is upon us. For most people this means fun. Fun at the zoo, baseball field or pool. For me, summer means pain.
Last year, after a small knee injury, I began to notice a redness on that knee. With this redness came a burning pain that brought tears to my eyes. Soon, this redness would not only appear in that knee, but in both of my feet as well.
I went to the doctor for a follow-up on my knee injury and explained the symptoms. He had never heard of anything like it, and said we should “keep an eye on it.” As the days got warmer, the pain got worse and spread quickly. My husband was getting more and more concerned. He was doing research and found a YouTube video of a woman with the same symptoms. This is how I first found out I had a rare disease called erythromelalgia. I am one in 100,000.
Erythromelalgia is a rare disease where my blood vessels expand too much when I am overheated, over-stressed or just overdoing it. My skin will turn red and swell, causing a very strong burning pain. So as you can imagine, the heat of summer can cause a pain so bad it brings me to tears.
As summer nears, I am saddened by the thought of not being able to take my two children to the zoo without an excruciating amount of pain. To do this in the middle of summer, I will most likely have to be on pain medication and be in a wheelchair.
I am not writing this for sympathy. I am not writing this for personal attention. I am writing this for awareness. There are so many people out there who are like me. We have a disease that is so rare that the only people who understand live miles away. I am so grateful for the Facebook group for people with erythromelalgia. Even if we don’t have answers, it is just nice to know I am not alone.
I thank God for all I have. Two beautiful children, a supportive husband and a supportive group of friends. No, they don’t understand the pain, but they are there for me when I need them.
If I can reach just one person who is still on the search for a diagnosis, I will consider this a victory.
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Thinkstock photo via AndrisBarbans.
Hello! I have a rare disease called Erythromelalgia. I also have Raynaud's Phenomenon and Sensory neuropathy. I want to raise awareness for Erythromelalgia and share my daily struggles.
kayla-beeney