Flares are a big part of life for individuals living with hidradenitis suppurativa (HS). Members often talk about flares on myHSteam. To understand the experience of a flare, myHSteam read through hundreds of member discussions to learn what it’s like to go through a flare, in order to offer insights for people living with the condition.

Here are some key findings our study revealed.

How People Talk About Flares

People on myHSteam talk about flares in a few different ways, including:

• The actual boil or lesion itself
• The period when their HS is actively bothering them
• The general area where they are having problems

In myHSteam members’ own words:

• “Last week, I just had a flare-up removed in my groin, and I just got another one five days later on the opposite side.”
• “I just got diagnosed with HS today after a severe flare-up (couldn’t leave bed for nine days).”
• “These flares make it so hard to walk or bend. I can wake up in the morning with my skin itching and burning and, within two hours, I have a new cluster of boils, and I know right where the new spots are.”

Members also have very powerful descriptions of the pain associated with HS flare-ups.

• “It is like a hot knife cutting your flesh, day after day.”
• “For me, it’s like having fire inside a bubble trapped under your skin.”
• “I am currently bedridden waiting on a bump to open and drain, and it is at the point where even touching it is excruciating.”

The Flare Cycle Based on myHSteam Members’ Experiences

Members talk about flares as a process. There are steps they often will go through before they feel relief. Not everyone experiences the same symptoms with HS, but they generally follow the same cycle.

Early Indicators of a Flare

Members of myHSteam report that these signs may include an itchy area or a tingling sensation. “I’ve been feeling tingling under the right arm, and finally it has shown its ugly face,” one member shared.

Another wrote, “I seem to notice when a flare-up comes, the skin area seems to be itchy. Not long after that, the swelling starts. Sometimes, it is a tender area.”

Increased Swelling and Inflammation

A localized flare-up in HS, known to members as a boil, lump, or bump, involves a specific area becoming more inflamed and painful over time, showing increased redness, swelling, and other symptoms. The lesions can increase in size drastically. Often with this swelling, members will experience a great deal of pain.

Some myHSteam members wrote:

• “I am praying this flare-up goes away in a few days. It’s been a week with a golf ball under my arm.”
• “I can feel them moving and growing under my skin with each lump and burn.”
• “Feels like it’s burning from the inside out. I’m in relentless pain. I had to call out of work for two days. I just need it to stop for a bit.”

Many people are tempted to try to burst these boils or lesions. “I know it’s not recommended, but I pop them ASAP just for relief. If you haven’t ever had the pain of these monsters, please don’t judge,” one member commented.

Some relieve the pain either with heat or ice. Others will use different topical treatments, such as hydrocortisone or an over-the-counter pain relief cream. Many people find it can be a process of trial and error.

Lesion Bursts

The next step in the cycle is that the boil or lesion will leak or burst. This process can be painful, messy, and smelly at the time, but it leads to relief. One myHSteam member shared, “Today, I am in the middle of a flare-up. The good thing is that I am not in pain. When my lesions drain, my pain decreases. While it is inconvenient to have to wear and change bandages, I feel good about not being in pain.”

Healing

After a lesion bursts, the healing process can begin. How long this takes (and whether the lesion ever fully heals) varies a great deal, depending on the person. Sometimes, they will heal, only for members to have to experience this cycle again.

In members’ own words:

• “I had a flare-up a month ago and still struggle to get rid of the bugger.”
• “I have an open wound on my armpit. It’s been like this for more than three weeks now. Any suggestions on what I can do or take to help it heal?”
• “The flare-up on my breast that refused to go away for seven months finally started to heal this month. After three weeks of promising signs, it came back yesterday. … Frustrating is an understatement.”

Impact on Daily Living

Flares affect many aspects of everyday life, including basic activities, clothing choices, and relationships. Some people talk about trouble sitting or standing due to the location of the flare-up. Others will worry about whether a leaking boil will stain clothing. Still, others talk about how it is painful to go to the bathroom. Many talk about how the pain, the leakage, or the smell make them less inclined to be sexually intimate with someone.

Connect With Others

On myHSteam, the social network for people and their loved ones living with hidradenitis suppurativa, more than 38,000 members come together to ask questions, give advice, and share their stories with others who understand life with HS.

What is the flare-up cycle like for you? Are these descriptions similar to what you experience? Share your thoughts in the comments below, or start a conversation by posting on your Activities page.