Guest post: What It’s like Living with Erythromelalgia by Jordyn
Hi, my name is Jordyn and I have many different chronic illnesses. However today, I want to talk about one of the rarer ones in hopes of bringing awareness to it.
I am living with Erythromelalgia and no, I don’t know how to pronounce it either. This condition has been present in my life for 8 years now, ever since the beginning of my chronic illness journey.
The Science Behind Erythromelalgia
Erythromelalgia is a rare vascular peripheral pain syndrome. The blood vessels in the arms and legs are blocked several times throughout the day. Scientists don’t know why this blocking occurs, but it causes some severe problems.
The surrounding nerves become inflamed and sensitive due to this. My hands, for example, will turn red during an attack. This is because of the surge of oxygenated blood that flows back into said hand when the veins unblock. I happen to have the primary type of Erythromelalgia. Meaning that I have a genetic mutation that is causing this disorder. I don’t understand exactly how it works, but it has something to do with how salt reacts in your cells.
What It’s like Living with Erythromelalgia
Now that you know more about the science behind my condition, let me tell you how it affects me. The worst symptom that comes with Erythromelalgia is the burning pain. In the middle of a flare, my arms/hands and legs/feet are on fire. I cannot walk, hold my phone, or even have a slight breeze blowing over me. The pain is too great. It is also one of the reasons that I am homebound. I can never predict when a flare-up will come, even though I am on preventative medication. Erythromelalgia leaves me unable to work or go out to do fun things.
This condition is affected by heat and exercise, so in the summer, the pain gets worse. It intensifies my heat intolerance caused by POTS and severely limits my ability to move. Every day is a struggle. I never know how I am going to feel or what is going to happen. As I mentioned previously, Erythromelalgia makes my nerves hypersensitive, so if I am flared with a different condition, this will flare too.
Family and Erythromelalgia
Most of my family does not believe that I suffer from Erythromelalgia, let alone any chronic illness that I have. Similarly, with friends, I am mostly deserted. Even the two friends who live in the same town, I interact with them more online than I do in person. The complications of being homebound, and sometimes bedbound, makes it difficult for me to be a “normal” 21-year-old. Romantically, I have never been able to date. I became sick at 14 years old and had to transition to online school. I then became mostly homebound shortly after. So, it has mostly affected me in that sense.
My mom is my caretaker. She handles all of my doctor’s appointments, medication refills, and other similar things that my body makes me incapable of doing. Most days I am sitting on the couch, barely able to move. She helps me in so many different ways that it is hard to list them all. However, I do know that It wouldn’t be possible for me to survive without my mom whilst having this cruel condition. She fought for me long before I could stand up for myself and is a huge reason why I am dedicated to helping others today.
What I Wish I Knew Before Developing Erythromelalgia
If I could know one thing about this condition before I developed it, I would want to know how painful it is. Having Erythromelalgia is insanely gruelling. Especially with the opioid crisis going on in America right now. Opioid medication is the only thing that will stop a flare. Even with a diagnosis, the medicine is hard to obtain. With this illness we suffer. The suicide rate is extremely high and you feel like you’re suffering for no purpose. Without proper doctor knowledge, people go years without treatment, doing things to manage the pain that actually worsen the disease. My hope in talking about my disease is that it will spread awareness of it. I don’t want others to go through the torture I did.