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Hidradenitis Suppurativa: How to Keep a Symptom Journal

A look at what information to record and some of the key benefits.

Hidradenitis Suppurativa: How to Keep a Symptom Journal

If you’re living with a chronic condition like Hidradenitis Suppurativa (HS), you know how challenging the management of it can be. From figuring out what’s triggering your flares to keeping all of your questions organized, it can be a lot to handle. A symptom journal can help.

What is a symptom journal?
Sometimes referred to as a symptom diary or a symptom log, a symptom journal is a collection of observations you keep about your health—from symptom flares to dietary habits to stress levels and more. It can help provide a snapshot of your HS (and your overall lifestyle) over time. You can bring this with you to your appointment and discuss it with your healthcare provider

A symptom journal can take many different formats. You may decide to write in a notebook, keep a running spreadsheet on a computer, or even use an app. There’s really no single right way to it. The important thing is that you choose a format that fits into your life and that you’ll be able to stick with. You’ll want to date each entry, and if possible, take notes in your symptom journal each day.

What should you include in a symptom journal?
Before you begin, it’s a good idea to ask your healthcare provider which specific pieces of information would be the most useful. Here are some things you might consider including:

  • Symptoms. Take note of when a new flare occurs or if your symptoms seem to get worse or change in some way, and also note the area of the body affected. Conversely, if you see things clearing up, be sure to write that down as well. If you’re using an electronic symptom journal or an app, you may even choose to snap a photo on your phone and include it with your journal entry. The more specific you can be about your symptoms, the better.
  • Medications. There are several medications that your healthcare provider may prescribe to treat HS. Record what times you take each medication.
  • Pain or discomfort levels. Another good habit to get into each day is rating your pain or discomfort levels on a scale of 1 to 5 (with 1 being only the slightest discomfort or virtually none at all). This will provide an important picture for both you and your healthcare provider, and it may help inform your future treatment options.
  • Moods and emotions. Each day, take some time to note how you’re feeling from a mental health perspective. Do you have moments of stress or anxiety? Are you feeling depressed? These could potentially trigger an HS flare or exacerbate symptoms. It’s also important to understand to what degree your HS is affecting your mental and emotional health and if you may require some extra support.
  • Dietary habits. Recording your meals can be a clue in determining if certain foods are affecting your HS or if your overall diet is playing a role.
  • Exercise habits. Be sure to record when you work out, the type of exercise, the duration, and even if you were perspiring a little or a lot. Perspiration can trigger an HS flare, so it will be helpful for you and your healthcare provider to understand if that’s the case for you.
  • Sleep habits. What time are you going to bed and waking up? Are your symptoms so uncomfortable that they’re interrupting your sleep? Any type of information related to your sleep hygiene can be useful for your healthcare provider.
  • Schedule of menstrual cycle. Some women find their HS flares around the onset of their menstrual period. This may be due in part to hormone fluctuations. Recording the date of your period can provide a clue into flare-ups.
  • Questions for your healthcare provider. As questions arise or you start to make some interesting observations, log them in your journal so you’ll have them all in one consolidated place when you speak with your healthcare provider.

What are the specific benefits of a symptom journal?
There are a number of perks to keeping a symptom journal. Here are some of the key benefits:

A better understanding of patterns, trends, and potential triggers. As you continue to record information in your journal, you may begin to see trends over time. By tracking patterns, you and your healthcare provider will begin to gain a better understanding of what may be leading to your symptoms or flares, be it elevated stress, certain foods, or even an extra hot day.
More effective patient-to-provider interactions. One of the many great things about a symptom journal is that it allows you to keep all information in one consolidated place. Taking your journal of notes and questions with you to your appointment can help your healthcare provider have a clearer understanding of your HS—including how your symptoms change over time, how your lifestyle habits may be affecting your flares, and what may or may not be working with your current treatment plan.
An increased sense of control over your HS. The process of recording your symptoms and other key information can help you gain a better understanding of what’s going on with your body. As you discuss your questions with your healthcare provider, you may begin to feel more empowered when it comes to managing your HS.

Medically reviewed in January 2021.

Sources:
Bryan Hodge. "The Use of Symptom Diaries in Outpatient Care." Family Practice Management, 2013. Vol. 20, No. 3.
National Health Service. "Hidradenitis suppurativa (HS)."
National Organization for Rare Disorders. "Hidradenitis Suppurativa."
HS Foundation. "Mental and Emotional Health Support."
Laura Huilaja, Hannu Tiri, et al. "Patients with Hidradenitis Suppurativa Have a High Psychiatric Disease Burden: A Finnish Nationwide Registry Study." Journal of Investigative Dermatology, 2018. Vol. 138.
Mayo Clinic. "Hidradenitis suppurativa and diet: What's recommended?"
Karolina Kaaz, Jacek C Szepietowski and Lukasz Matusiak. "Influence of Itch and Pain on Sleep Quality in Patients with Hidradenitis Suppurativa." Acta Dermato-Venereologica, 2018. Vol. 98, No. 8.
Erin Collier, Vivian Y. Shi, et al. "Special considerations for women with hidradenitis suppurativa." International Journal of Women's Dermatology, 2020. Vol. 6, No. 2.
University of Rochester Medical Center. "Journaling for Mental Health."

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