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Hidradenitis suppurativa (HS) doesn’t just affect how your skin looks — it also affects how it feels. Pain is one of the most common symptoms of HS. Although pain is often linked to inflamed abscesses or ruptured wounds, some people also experience sharp, stabbing pain that feels like being poked with needles. Others may notice unpredictable numbness or tingling.
Pain can lower your quality of life, take a toll on your mental health, and lead to long-term use of pain medications, including opioids.
Some people with HS develop neuropathic (nerve-related) pain and sensitivity, which can make even the light touch of clothing cause discomfort and distress. Unusual sensations like burning, pins and needles, or sudden changes in how your skin senses temperature or pressure can also occur.
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Members of myHSteam have described their own nerve pain. “It’s worse when I get a cyst,” one member said. “My legs and feet will hurt and burn, and I can’t sleep at all.”
If you’re living with these symptoms, you may be experiencing HS-related neuropathy. Here’s what that means and what you can do to manage it.
Neuropathy is a type of pain that stems from damage to the nerves or brain. This relatively common condition affects from 5 percent to 7 percent of the general population ages 45 and older.
There are many possible causes of neuropathy. One of the most common is uncontrolled type 2 diabetes, in which high blood sugar damages nerves over time. Other causes include:
Most people have experienced brief, temporary neuropathy. If you’ve ever had your leg “fall asleep” after sitting too long, then you know what neuropathy feels like — numbness followed by a sensation of needles poking you as blood flow returns. Within a few minutes, the feeling fades.
For people with HS, neuropathy can be different. The tingling, burning, or stabbing sensation may come on without warning — and moving around doesn’t make it go away. In some cases, the pain is severe enough to interfere with daily life. “My feet are so numb and tingling,” one myHSteam member wrote.
People with HS have described “shooting” or “blinding” pain, as well as stinging, burning, and itchiness. Neuropathy can also cause problems with balance and coordination, especially if it affects the feet or hands.
Recent research suggests that neuropathic pain is fairly common in people with HS. A 2020 study looked at neuropathic pain in 110 people with active HS. The results showed that 30 percent of participants experienced “likely neuropathic pain” and 29 percent had “possible neuropathic pain.”
Another small study involving 20 people with HS explored types of nerve-related sensations. Half of the participants reported pain caused by light touch. Many also experienced a loss of normal sensation:
The connection between neuropathic pain and HS isn’t fully understood, but researchers believe inflammation may play a role. One theory is that the same inflammation that leads to painful lesions could damage nearby nerve fibers.
If you’re living with HS, it’s important to tell your dermatologist about new symptoms, including pain or unusual sensations. In some cases, neuropathy may be temporary. For example, nerve pain following surgery or from an infected lesion may improve as your body heals.
Other health conditions that commonly occur alongside HS, such as diabetes or obesity, can also raise your risk of neuropathy. Getting a full evaluation that includes blood tests and neurological exams can help uncover other factors that might be contributing to chronic pain and neuropathy.
People with HS may experience more than one type of pain. Effective treatment often involves a combination of approaches. Pain management strategies may include:
Your healthcare provider can work with you to find solutions that fit your needs and improve your quality of life.
Managing your HS is a key part of managing your pain. Many HS medications aim to reduce the inflammation that leads to painful lesions that often appear in the armpits, buttocks, groin, and inner thighs.
People with moderate to severe HS may benefit from biologic medications, which can help calm the immune system and lower inflammation throughout the body. Biologics help prevent HS flare-ups and can make symptoms feel more manageable.
Only your healthcare provider can tell you what types of exercise are safe for your specific health needs, but in general, physical activity can boost both your mental and physical health.
One member of myHSteam shared how they get motivated to move: “What I did was pick exercises that I enjoy doing and set a small goal with low reps of each. I did them first thing every morning. I do a set number of reps of each exercise. I choose numbers that connect to my loved ones, so it’s an added motivator.”
Studies suggest that most people with neuropathy can benefit from staying active. Exercise may help:
Ideally, aim for 30 to 45 minutes of exercise a day. Choose a type of activity you enjoy, such as walking, dancing, or working out at the gym — and every little bit counts. Even 10 minutes at a time can help you get into a routine and make a meaningful difference in the long run.
On myHSteam, people share their experiences with hidradenitis suppurativa, get advice, and find support from others who understand life with HS.
Do you experience nerve pain? Let others know in the comments below.
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