Living with hidradenitis suppurativa (HS) can mean dealing with pain, stress, and worry about symptoms getting worse. The good news is, there are things you can do starting today to make a difference and support your physical and mental health. Here are five approaches that can make living with HS more comfortable and less challenging.
Like everyone else, people with HS can benefit from living a healthy lifestyle. Although HS is not caused by diet or other personal choices, making healthy lifestyle changes may significantly improve HS symptoms. It can be hard to change habits of many years, but working toward a healthier lifestyle is worth it to control HS and feel better.
- Maintaining a healthy weight can help reduce the severity of HS symptoms. One study followed 383 people who received bariatric surgery for obesity. Among the participants, 45 were found to have HS. Two years after weight loss, the number of participants who reported having HS symptoms decreased by 35 percent.1 A weight loss of more than 15 percent is associated with significant reduction in severity of HS symptoms.1 Losing weight can also reduce friction where skin rubs together on the body, which can lead to reduction in irritation of the skin. You may also sweat less if you lose weight – sweat can be an irritant that causes HS flare-ups.2
- Giving up smoking is another lifestyle change that may improve symptoms of HS. While the exact impact of tobacco use on HS requires more investigation, a retrospective study of 50 million Americans' medical records found that smokers were almost twice as likely to be diagnosed with HS than nonsmokers.3 Some studies have found that smoking is associated with more severe symptoms.4
- The pain associated with HS can interfere with exercise, making it harder to lose weight. Sweating and friction, common during most types of exercise, can also contribute to HS flares. It is important to find a type of exercise you can do consistently that is comfortable for you. Swimming improves pain for some people with HS, and also helps them stay in shape.2
- Dietary changes have helped some people who have HS. One small study of 47 people with HS showed that 83 percent who gave up dairy, processed sugar, and flour had reduced symptoms of HS.5 An even smaller study monitored 12 people being treated for HS who avoided beer and foods containing wheat or brewer’s yeast. Within a year, all 12 saw their HS symptoms clear.5
- Zinc supplements taken daily may help modulate your immune system.5 Always ask your doctor before you begin taking a new supplement. Some supplements may cause problems with medications you are taking. It is possible to overdose on some supplements, so ask your doctor how much you should be taking.
Add a comment below: What lifestyle changes have made a difference with your HS?
There are several simple tactics to avoid triggers that can cause breakouts of hidradenitis suppurativa.
HS can affect emotional health, impacting one’s career, intimate relationships, and social life. The stress associated with HS can also trigger more flare-ups, which feed into the cycle of lowered self-esteem, body image issues, and possible depression.8 It is just as important for people with HS to take care of their psychological health as their skin. There are many approaches to managing stress and improving mental and emotional health.
- Speak to your doctor about symptoms of anxiety and depression. Antidepressant medications are effective for many people.
- Traditional psychotherapy, or talk therapy, can benefit people with HS, and sometimes can be used as an alternative to medication for depression.
- Cognitive behavioral therapy (CBT) is one kind of talk therapy and may be done one-on-one or in groups with family members or with people who have similar issues. CBT is focused on developing mental strategies for coping with and reducing perception of pain.9
- Meditation can induce a sense of calm and balance, which benefits both emotional and physical health. Meditation can also be practiced outside the home, including a doctor’s office or other public places when stress relief is needed.10
- HS support groups, either in person or online like myHSteam, are helpful in letting people with HS openly discuss their frustrations, share their experiences in dealing with HS, and band together to advocate for themselves.8 The non-profit HS Support Group also publishes a series of books entitled “I Will Not Hide” that showcase the personal stories of people living with HS. Sharing these books with friends and family may help them understand the challenges of living with HS.
Read more about other health conditions associated with hidradenitis suppurativa in What is HS?
Add a comment below: How do you manage stress?
Some people with HS experience daily pain. For others, pain is limited to days when HS is more active. It is also common to have pain as a result of surgical procedures for HS.
- Your doctor or nurse will teach you how to properly dress and care for open lesions and other HS-related wounds at home. Follow their directions consistently to help with healing and prevent infections.
- Applying a wet, warm washcloth, teabag or other sort of compress can help reduce swelling and ease pain. Keep the compress on for about 10 minutes at a time.4
- Over-the-counter pain medication can help with pain and inflammation.9 Always check with your doctor before taking new medication.
- Ask your doctor about prescription topical medications if over-the-counter medications don’t help with pain.9
It is important to find a dermatologist familiar with treating HS. Regular flare-ups, which are common, can lead to deep scarring and the formation of sinus tracts.7 Complications of HS can include chronic infection, joint pain, and severe swelling called lymphodema.7 There may also be higher risk of skin cancer associated with severe, long-term HS.7
Seeing a dermatologist for regular skin checks can help catch skin conditions early, before symptoms become severe. Ask your dermatologist how often you should return for skin checks and what you do during a hidradenitis suppurativa flare.
References- Kromann, Charles B.; Ibler, Kristina S.; Kristiansen, Viggo B.; & Jemec, Gregor B. E. (2014). The Influence of Body Weight on the Prevalence and Severity Of Hidradenitis Suppurativa. Department of Dermatology, Roskilde Hospital, Health Sciences faculty; University of Copenhagen, Roskilde; and Department of Surgical Gastroenterology, Hvidovre Hospital, Hvidovre, Denmark. Retrieved at https://www.medicaljournals.se/acta/content/html/10.2340/00015555-1800. Accessed May 2019.
- Lee, R. (1987, 1989, 1999, 2002, 2012). “Hidradenitis Suppurativa,” National Organization for Rare Disorders (NORD). Retrieved at https://rarediseases.org/rare-diseases/hidradenitis-suppurativa/. Accessed May 2019.
- Garg, A., Papagermanos, V., Midura, M., & Strunk, A. (2018). Incidence of hidradenitis suppurativa among tobacco smokers: A population-based retrospective analysis in the U.S.A. British Journal of Dermatology,178(3). doi:10.1111/bjd.16391
- “Hidradenitis suppurativa diagnosis and treatment.” Mayo Clinic. https://www.mayoclinic.org/diseases-conditions/hidradenitis-suppurativa/diagnosis-treatment/drc-20352311. Accessed May 2019.
- Alikhan, Ali, et al. “North American Clinical Management Guidelines for Hidradenitis Suppurativa: A Publication from the United States and Canadian Hidradenitis Suppurativa Foundations.” Journal of the American Academy of Dermatology, vol. 81, no. 1, 2019, pp. 76–90., doi:10.1016/j.jaad.2019.02.067.
- “Hidradenitis suppurativa: Tips for Managing.” American Academy of Dermatology Association. https://www.aad.org/public/diseases/painful-skin-joints/hidradenitis-suppurativa#tips. Accessed May 2019.
- Authored by Dr. Harding, Mary; reviewed by Dr. Cox, John (2016). “Hidradenitis Suppurativa.” The Information Standard. Retrieved at https://patient.info/skin-conditions/hidradenitis-suppurativa-leaflet. Accessed April 2019.
- Gill, Liza; Williams, Melissa; & Hamzavi, Iltefat (2014). Update on hidradenitis suppurativa: connecting the tracts. National Center for Biotechnology Information, U.S. National Library of Medicine. Retrieved at https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4278191/. Accessed May 2019.
- “Managing Pain in Patients with Hidradenitis Suppurativa (HS).” Hidradenitis Suppurativa Foundation. https://www.hs-foundation.org/wound-care-nutrition/managing-pain-hs/. Accessed May 2019.
- “Meditation: A simple, fast way to reduce stress.” Mayo Clinic. https://www.mayoclinic.org/tests-procedures/meditation/in-depth/meditation/art-20045858. Accessed May 2019.Accessed May 2019.
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Interesting article for all sufferers.
Just know that you are not alone.
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