Lifestyle Tips to Help You Manage Hidradenitis Suppurativa (HS)

This article is for people who are living with HS and their care partners, or anyone who wants to learn more about HS. The goal of this activity is to help you learn about lifestyle changes that may help manage HS and its symptoms.

You will learn about:

• How living with HS can be different for different people

• Ways to help manage HS and its symptoms

• Lifestyle tips for people who are living with HS

• Working with your doctor and healthcare team and questions you can ask

HS can affect different people differently. Some may have mild symptoms, but for others HS can be severe and greatly affect their quality of life.

HS symptoms can include:

• Itching, burning, discomfort, or pain

• Small, indented areas with blackheads

• Painful, pea-sized lumps under your skin that can last for weeks or months

• Lumps that break open as sores and drain fluid that has an odor and blood

• Tunnels that form under the skin that heal very slowly or not at all

For many people, HS can also have times when symptoms improve (remission) and then get worse again or flare up.

HS can be painful and may limit your physical ability and functioning. It can even affect your daily life and mental well-being. And while there's no cure for HS, there are ways to help you manage it and its symptoms and protect your quality of life.

Together, you and your doctor can make a treatment plan that best fits your individual needs that may include:

• Lifestyle changes

• Wound care and a skincare routine

• Procedures

• Medicines

• Joining a clinical trial

For some people, certain lifestyle changes can help manage HS and its symptoms.

Tips to try can include:

• Avoiding triggers to help prevent flare-ups

• Not smoking

• Maintaining a healthy weight and staying physically active

• Changing your diet

• Keeping your skin cool and treating it gently

• Finding ways to help cope with stress

For some people, flare-ups may be triggered by factors such as weight gain, stress, hormone changes, heat, sweating, and your period. Taking steps to try to prevent flare-ups may help manage HS and its symptoms, so if you have known triggers, try to avoid them. Some triggers, though, can't always be avoided and flare-ups can also sometimes happen without any known or identified cause.

If you smoke, consider quitting, as smoking may make symptoms worse. Quitting may also help reduce flare-ups and keep HS from getting worse. And it can help with other health conditions as well. Talk to your doctor about ways to help you quit.

For some people, being overweight may lead to worse HS symptoms. So staying physically active and maintaining a healthy weight may help manage them. It may also lower your risk for other health conditions. 

Talk to your doctor or a dietitian or nutritionist about your diet. For some people, eating certain foods or drinking alcohol may affect HS and its symptoms, so they may recommend changing your diet or help you make a diet plan.

Before starting any new exercise or diet plan, talk to your healthcare team. They can work with you to find one that meets your individual fitness and nutritional needs.

Keep your skin cool and try to limit sweating. If your doctor recommends applying heat to relieve pain, ask them about the right temperature. HS may also get worse in hot weather, so staying in a cool or shady place may help.

You'll also want to treat your skin gently. Ask your doctor about non-irritating clothing and what you should and shouldn't use on your skin, such as deodorants and antiperspirants, cleansers, moisturizers, powders, sunscreens, and fragrances. Washing your skin gently and patting, not rubbing, it dry may also help.

Living with HS can greatly affect your mental and emotional well-being and quality of life, so finding ways to help cope with stress can be important.

For many people, pain, sores, and other symptoms may lead to feeling self-conscious, isolated, anxious, or depressed. HS can even affect your daily activities, sleep, and sex life.

Be sure to tell your doctor about how HS impacts your daily life and how you're feeling. They can help you find ways to cope with stress, including recommending a counselor, mental well-being professional, or support group.  

Keeping all your medical appointments and having open communication with your doctor and healthcare team can be key. Your doctor may recommend you see a dermatologist, who specializes in treating skin conditions, and other specialists who can help you with pain, diet, and your mental well-being.

HS symptoms can change over time, so seeing your doctor and healthcare team can help you get the proper care and treatment. Be sure to tell them about your symptoms, flare-ups and any triggers, how HS is impacting your daily life, and personal preferences for your treatment plan.

Questions you can ask your doctor and healthcare team about managing HS and its symptoms can include: 

• Are there any lifestyle changes I should make?

• How can I help prevent flare-ups? Are there any triggers I should avoid?

• What type of diet and exercise plan do you recommend?

• What should I use or not use on my skin?

• What treatments are available, and what are their side effects?

• Are there other doctors or specialists I should see?

• What should I do if I start to feel stressed or depressed?

Congratulations!

You have successfully completed the program Lifestyle Tips to Help You Manage Hidradenitis Suppurativa (HS).

HS Foundation

View Additional Materials on this topic that you may find useful:

Hidradenitis Suppurativa

Hidradenitis Suppurativa -- National Institutes of Health

Hidradenitis Suppurativa -- US National Library of Medicine

HS Diagnosis, Treatment, and Steps to Take