Hidradenitis suppurativa (HS) causes pain that can be difficult to treat. In fact, pain is one of the top three symptoms reported by myHSteam members, along with depression and recurring skin lesions.
In addition to the acute pain of HS lesions, HS can cause chronic pain throughout the body, even when inflammation is under control. Cognitive behavioral therapy (CBT), a type of talk therapy, may help some people with HS manage their chronic pain.
HS is more than just a skin disease — it is an inflammatory disease that can affect the entire body. Pain from HS can be debilitating and disabling, and it’s a frequent cause of emergency room visits in people with HS.
Pain is more complex than it may seem. Although it feels like we experience pain in different parts of our body, pain actually comes from the brain. The brain processes sensory input (stimuli) and interprets it, resulting in feelings of pain.
Over time, chronic pain can essentially “rewire” your brain. It may make you more sensitive to pain, creating a self-perpetuating cycle of worsening pain. This complex cycle makes managing chronic pain difficult.
Unfortunately, some members of myHSteam have been afraid to bring up pain relief with their doctors for fear of judgment or getting the wrong prescription. “I know there is an opioid epidemic, and if you so much as say ‘pain’ to most doctors, they just mark ‘drug-seeking’ in your chart, and no medical professionals will ever take that patient seriously again,” said one member. “But once I read that serious pain is a documented problem, especially with the worst cases, I felt more comfortable mentioning the problem. It was really debilitating pain. I couldn’t sit, and I was too scared to mention it.”
Another member said, “I’ve taken so much ibuprofen I can no longer take it because it bumps my blood pressure way up. I’ve had doctors prescribe antidepressants for pain management.”
CBT is a type of therapy that can make a real difference in your quality of life with HS. In some cases, CBT techniques can replace or reduce pain medications. Other times, they work with pain medication for better control of pain symptoms.
CBT helps people identify and reframe negative self-talk. Unlike other types of psychotherapy (like psychoanalysis), CBT works on solving problems today without going too far into your background or history. Through a series of sessions, a trained therapist will encourage you to talk about your issues and express your feelings and beliefs. Through this process, the therapist will help you uncover inaccurate or harmful ways of thinking about yourself and your life.
Next, the therapist will coach you through reshaping your thoughts to develop a more positive mindset. You’ll learn a new way of talking to yourself and thinking about your experiences. You’ll also learn other strategies, like relaxation techniques. The therapist will provide homework or activities you can do outside of the session to keep making progress.
CBT is a structured, goal-oriented program that’s intended to be relatively short term. If you can’t attend in-person counseling, virtual options can be effective alternatives. CBT can be offered in a group setting or as one-on-one sessions.
Other psychological therapies — such as mindfulness-based stress reduction — can also help you manage pain and emotional distress from HS. Acceptance and commitment therapy, which is closely related to CBT, is another therapy that can help you better manage chronic pain and emotional or psychological problems.
You can ask your primary care provider or dermatologist for a CBT referral to help with your HS-related pain. You may also be able to find qualified CBT providers through your insurance company or a website like Psychology Today.
CBT can help you manage chronic pain from HS as well as depression, anxiety, and other problems that might accompany it. Although CBT can’t make the pain from HS go away, it may improve your outlook and ability to cope. CBT helps people focus on the present rather than the past, so they can deal with their current symptoms rather than becoming depressed or overwhelmed by past experiences.
HS can place a huge psychological burden on people. A negative self-image, embarrassment, and shame can all dramatically affect the quality of life and mental health of those living with HS.
CBT is not always effective for all individuals. Still, it has few — if any — drawbacks. It may reduce your need for pain medications like opioids, which can be abused. CBT can also reduce your need for long-term treatment with nonsteroidal anti-inflammatory drugs such as ibuprofen, which can have negative effects on the liver and kidneys.
Chronic pain, depression, and anxiety are serious comorbidities of HS that can lead to dangerous consequences, such as suicide. Seeking proper treatment — like medication, therapy, or both — can help you manage your condition physically and emotionally.
Members of myHSteam have shared how mental health counseling has benefited them. “By seeking help in the form of talk therapy for myself, I learned that I have low-level depression and anger. This is largely due to hidradenitis, but other major life events factor in as well,” one member shared. “I’m not helplessly controlled by this but more aware and better able to combat its effects. Finding the strength to admit the need for help, seeking it, and then making healthy adjustments in thinking and behavior is well worthwhile.”
“I personally find it helpful to purge my frustrations and concerns in therapy,” another member commented. “I’ve been going to therapy for six years now and always will as long as I have this disease.”
“I am currently seeing a chronic pain psychologist and have group sessions every Wednesday,” another member wrote.
On myHSteam, the social network for people and their loved ones living with hidradenitis suppurativa, more than 26,000 members come together to ask questions, give advice, and share their stories with others who understand.
Are you living with hidradenitis suppurativa? What has helped you manage pain? Share your experience in the comments below, or start a conversation by posting on your Activities page.