Pain Management for Hidradenitis Suppurativa

People who have hidradenitis suppurativa (HS) develop areas of damage, or lesions, on their skin. These bumps may become red and fill with pus. They may burst, drain and resolve, then scar and even come back. In some people, tunnels that drain pus may form in the skin.¹

Pain is common with HS because the disease destroys skin. Pain also happens because the immune system is constantly responding. Inflammation and painful areas filled with pus (abscesses) are typical in people who have HS.^1,2

But there is hope. Pain from HS can be managed.³

How common is pain with HS?

Up to 3 in 4 people with HS experience pain. Many people rank pain as more bothersome than other HS symptoms, including:⁴

• Pus drainage
• Itching
• Appearance
• Smell

People with HS also may find that pain disrupts their sleep. In fact, itching and pain can reduce the quality and length of sleep. This kind of trouble falling or staying asleep on a regular basis is called insomnia.⁵

How severe is pain with HS?

Pain from HS can be severe enough to prompt a visit to an emergency room. Emergency room visits are usually prompted by acute lesions and abscesses. When this happens, about 2 in 5 people with HS rate their pain as a 10 on a 10-point scale.⁶

Because HS happens in cycles, so does the pain. When the lesions are healing, pain may lessen somewhat. But people living with HS may feel chronic mild pain on a daily basis.^6-8

Many factors affect how someone with HS perceives their pain. For example:^3,7,8

• Depression and anxiety can increase sensitivity to pain.
• Women and smokers are more likely to report worse pain.
• Pain is usually reported to be worse when multiple skin areas are affected.
• People with more severe HS disease report worse pain.

What kind of pain happens with HS?

People with HS describe their pain in many ways, such as:⁷

• Shooting
• Itching
• Blinding
• Taut, tight or tugging
• Boring (as in digging)
• Cutting
• Exhausting

How can my doctor help?

Your doctor may recommend either psychological treatments or drug options to manage your pain. A combination of these is often the best approach.³

Psychological treatments

Seeking psychological treatment does not mean that your pain is imagined. Your pain is real. But evidence shows that certain psychological approaches can help people cope with chronic pain.³

Studies show that cognitive behavioral therapy (CBT) can help people learn to use problem-solving skills to reduce emotional distress from physical pain. This may mean exploring the connections between your thoughts, pain, emotions, and behavior.³

Acceptance and commitment therapy is another treatment. It helps people identify their physical pain separately from their emotional or psychological suffering. This type of therapy may be recommended if you have severe chronic pain from HS.³

Drug treatments

Pain-relieving medicines may be used to help manage HS pain. Your doctor may suggest them when therapy aimed to control your HS fails. They may also be used during a specific period of worse symptoms (called a flare).³

Some medicines can be applied directly to your skin. These are called topical agents, and they include:³

• Intralesional triamcinolone
• Diclofenac
• Lidocaine
• Menthol

Other medicines are taken by mouth and work throughout your body to relieve pain. These are called systemic agents. Options that do not contain opioids include:³

• Celecoxib
• Diclofenac
• Ibuprofen
• Naproxen
• Acetaminophen

Additional systemic agents taken by mouth that work against pain caused by nerve damage include:³

• Gabapentin
• Pregabalin
• Duloxetine
• Venlafaxine (also used for depression and anxiety)
• Nortriptyline

Antidepressant drugs are sometimes recommended for people who have HS, chronic pain, and depression. Treating depression can affect how the brain perceives pain and help make it feel more manageable. These agents include:³

• Desipramine
• Amitriptyline

Other things to know

Always remember that you are not alone. You can find other people with this painful disease. Sharing your story and listening to others' stories can help you feel more connected and understood.

Try searching for a local or online support group for chronic pain. Evidence shows that being in a support group can help people with chronic pain feel better.⁹