Does eczema cause you pain?

Eczema and pain are two complex medical diagnosis. Apparently there’s been a lot of research about the itchiness of eczema, but that people don’t really talk about the pain eczema causes them.

In December, I participated in a very interesting eczema focus group evaluating the relationship between eczema and pain. Principal Investigator Dr. Aaron Secrest explained how “a recent survey of more than 1,000 people with eczema in 34 countries showed that itchiness and pain were the most concerning symptoms to patients.” Secrest continued to say that “we have a reasonable understanding of itchiness with eczema – there is very, very little information on the effects of pain in eczema. In our focus group today, we want to learn how eczema causes itchiness and pain in you or your family member and how this impacts your daily life – both work life and home life.”

Myself, two other women and two men all live with severe eczema. Most of us were married, had experienced eczema since we were very young and had to become our own advocates to treat our eczema over the course of our lives. One shared how she’d previously experienced topical steroid withdrawal. Another participant mentioned she’d was on the new biologic dupixent or dupilumab and that it caused them blurry vision issues, especially at night.

After introductions, we were asked a series of questions about our eczema, asking:

• When do we feel our eczema itching the worst?
• How does our eczema affect our sleep?
• How does our eczema feel in regards to pain?
• How does it affect our relationships?
• Does the itchiness wake us up in the middle of the night or has your partner had to go to another bed to sleep?
• What kinds of unsolicited advice have you received from other individuals that you do not even know?
• How has it affected your mood?

All our responses were similar and fascinating. My eczema is the worst when I’m stressed, when I sweat and whenever I eat something higher in nickel. Most of the time it doesn’t affect my sleep, yet there are times I wake myself up scratching, especially when I’m overheating.

One compared the pain eczema causes her to the feeling of 1,000 paper cuts. Ouch! My eczema often  feels like it’s on fire and literally radiates heat when it’s severely inflamed. Ice and cold compresses help. When I can’t stop itching, I wonder if I look like a surgery patient coming off anesthesia.

All of us had stories about strangers giving us unsolicited advice. One said his father died of skin cancer and at the funeral someone told him to wear sunscreen so he doesn’t get skin cancer. WTF? People can be so cruel. What gives others to audacity to tell us how to treat or deal with our own eczema? There’s so much misunderstanding and shame around eczema. I’ve been told to just use different lotion or that I should cover it up with makeup. Nope. My mood is only affected when others overstep. I can feel embarrassment or shame, but they’re fleeting emotions and I work to overcome them by engaging in self-care.

After introductions, we were asked:

• When do we feel our eczema itching the worst?
• How does our eczema affect our sleep?
• How does our eczema feel in regards to pain?
• How does it affect our relationships?
• Does the itchiness wake us up in the middle of the night or has your partner had to go to another bed to sleep?
• What kinds of unsolicited advice have you received from other individuals that you do not even know?
• How has it affected your mood?

All our responses were totally similar and fascinating. My eczema is the worst when I’m stressed, when I sweat and whenever I eat something higher in nickel. Most of the time it doesn’t affect my sleep, yet there are times I wake myself up scratching, especially when I’m overheating.

One compared the pain eczema causes her to the feeling of 1,000 paper cuts. Ouch! My eczema often  feels like it’s on fire and literally radiates heat when it’s severely inflamed. Ice and cold compresses help. When I can’t stop itching, I wonder if I look like a surgery patient coming off anesthesia.

I feel lucky to have an amazing partner who adores and accepts me. We fell in love 2 years before my systemic nickel allergy diagnosis. She’s always been my strongest advocate. She’s been along for this crazy ride of my 5 day skin patch test in 2009 and when I returned home with a 3 page list of foods I should eliminate from my diet. As a result, our diet changed and my skin improved. Though the low nickel diet has been a miracle treatment, my eczema still reacts. I try to avoid using any prescriptions until it gets really bad. Desonide the prescription I use can thin my skin overtime and can make it more UV light sensitive. Stevie is supportive and aware of all the little things I do throughout the day to avoid nickel to improve my life.

All of us had stories about strangers giving us unsolicited advice. One said his father died of skin cancer and at the funeral someone told him to wear sunscreen so he doesn’t get skin cancer. WTF? People can be so cruel. What gives others to audacity to tell us how to treat or deal with our own eczema? There’s so much misunderstanding and shame around eczema. I’ve been told to just use different lotion or that I should cover it up with makeup. Nope. My mood is only affected when others overstep. I can feel embarrassment or shame, but they’re fleeting emotions and I work to overcome them by engaging in self-care.

What about you or your loved ones? How does your eczema make you both who you are and does it cause you pain? I’d love to hear your story in the comment section below. Thanks in advance for sharing.

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To compensate our time each focus group participant was given a $50.00 gift certificate to a local grocery store at the end of the hour. I haven’t received anything additionally for writing this post.

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Photo by Gabriel Matula on Unsplash.