friends putting hands on top of each other for support

How Social Support Has Helped Me Through My Erythromelalgia Diagnosis


In February 2016, I was at work sitting at my desk when I felt this horrible burning pain in the extremities of my feet. My extremities were bright red, stinging and burning. Previously, I thought it was a horrible bug bite, but then I noticed it was spreading on both of my feet. I made an appointment with my primary care doctor who ran some blood work and referred me to a rheumatologist.

The pain persisted and began to worsen. My feet became so sensitive that the weight of a bed sheet would force me to tears. I was sleeping with ice packs on my feet and I couldn’t wear close-toed shoes. I remember walking around a store and the pain being so severe that I ran out of a store and into a grocery store just to grab a bag of frozen peas to put on my burning feet. After two weeks of tears, calling out of work and canceling plans I finally got an appointment with the rheumatologist who diagnosed me with primary erythromelalgia (EM): a rare and incurable disorder.

EM is a neurovascular disorder that involves the dysfunctional narrowing and widening of blood vessels. The cause of EM is unknown and the majority of people report that the onset is sporadic. Most individuals describe the disorder as severe burning pain, redness and increased temperatures of the extremities and some people, including myself, get blisters.

EM is unique in that it is a bilateral disorder, affecting the right and left side of the body. People with EM report that they must be in cool rooms, have ice on their feet or keep cool air blowing on the irritated skin. Most people are affected in their feet, but some people experience this pain in their legs, hands and even their face. A vast majority of people diagnosed with EM are unable to work and often become depressed or isolated. Some even die by suicide because of this disorder. Doctors have found that some people find relief using anti-depressants, gabapentin, aspirin and calcium antagonists. Unfortunately, everyone reacts differently to the medication and many people find no relief at all.

After my diagnosis, I attempted to try several treatments with no relief. Before the diagnosis, I was an active distance runner. Running miles and miles was my personal self-care. However, after my diagnosis I wasn’t even able to walk outside in 72-degree weather unless my feet were submerged in ice water. I started feeling depressed and I just wanted to be alone. I felt bad constantly saying, “Sorry I can’t go out because of my feet.” Sometimes I would even make plans, but always cancel the day of because my feet were flaring up too bad. I started talking to my doctor about filling out disability forms because I was in too much pain to be at work. I was grieving the loss of my life and making myself anxious about the future. I have never felt so alone in my life.

Then, one day I stumbled upon a support group for people with EM. The group is very small. People from all around the world shared their stories, their successes and their disappointments. I remember my first post. I was crying and opening up about my personal experience. The next day there were several comments. So many people were optimistic and gave me great advice on how to manage friends, talk to family about the diagnosis and much more. There was one woman who with EM in her feet and legs. Her EM is so severe that for years she has soaked her feet and legs in ice buckets every day. She just went to the doctor and they are talking about amputating her legs because she is starting to get ulcers from the constant damage to her skin, and yet she still had words of encouragement. I thought, “Wow! She could be sitting here like me crying, but she wakes up every day and lives her life.” She is one of my heroes, and most importantly, she was the hope and encouragement I was looking for in this time of need.

The support group was the place where I found hope, connection and strength. I have yet to find any medication that makes me feel as good as social support – especially my online support group. We constantly uplift one another, and when one of us are down, we listen and let the other person know it’s OK to be sad. That has been some of the best advice from my support group. With all the doctors, medications and more, to this day a dose of social support is by far the best medication.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via Jacob Ammentorp Lund.

TOPICS
JOIN THE CONVERSATION

Related to Erythromelalgia

Why I Fundraise for Erythromelalgia After My Daughter's Diagnosis

By: Kristin Hooper I advocate and fundraise for erythromelalgia. My daughter is beautiful. She is 16 years old. She loves chilling with her friends, playing rugby, listening to music and her baby sister, Hailey. It is hard to believe that only five months ago she was a happy, healthy teenager who was studying hard at [...]
girl sitting on pier looking at water

What 'Chronic' Truly Means to a Chronically Ill Person

I miss the moments when I didn’t have to force a smile. I miss the times when I didn’t have to pretend I felt fine while out in public, only to get into my car and cry in silence. I miss feeling carefree and making plans without a moment’s hesitation. Ultimately, I miss the “me” [...]

The 'Hidden Victims' of My Rare Illness

Kimberly and her husband, Rob Nobody is prepared to be diagnosed with a rare illness. It almost seems like one moment, life is normal, and then everything is ripped away. Life is never the same again. Between the unanswered questions, the repeated trips to the doctors and the illness, the person seems to wander aimlessly [...]
teacher smiles with former student and two dogs

When One of My Students Noticed I Was Having a Flare-Up

As someone with a rare disease such as erythromelalgia, you sometimes become consumed with the misery of the pain. I’m a high school teacher and I am still trying to work full-time, which can be very challenging. I am so determined not to let this disease beat me, but there are days. Oh, there are days that [...]