I. Introduction

In HS, pain has a major impact on quality of life. Pain is a significant cause of suffering for individuals living with HS. HS pain can be caused by acute flares, or by damage from long-standing disease.

Surveys have shown that pain from HS is more severe than pain from other inflammatory skin diseases like eczema or psoriasis. And pain itself has a greater impact on overall wellbeing than disease severity, as measured using standard clinical staging scales, including Hurley stage. Many people living with HS, however, feel that their overall wellbeing and pain are not addressed adequately by healthcare providers.

The goal of this chapter is to provide you, the patient, with knowledge and tools that may improve your overall understanding of HS pain, common pain management strategies, and to help you better communicate with your healthcare teams.

II. Types of HS Pain

There are different kinds of pain in HS which may require different treatments. Understanding the different kinds of pain from HS and learning how to describe your pain may help you receive more effective treatment.

There are two major types of pain from HS: nociceptive and neuropathic pain. Nociceptive pain may be caused by flares of painful skin lesions. Common words used to describe this type of pain are “throbbing,” “aching,” or “gnawing.” Neuropathic pain is caused by nerve damage or changes in parts of the brain responsible for sensing pain. Neuropathic pain is often described as “burning,” “electric,” or “shooting.” There is ongoing research to study which types of pain are more common in people with HS.

Figure 20.1 includes common words people with HS have used to describe their pain. In this figure, the most commonly used terms appear largest in size. Finding the right words to describe your pain is important because different treatments may be recommended for different kinds of pain.

Figure 20.1 Words Used to Describe HS Pain by People With HS Created using data presented in Nielsen 2020 et al.

III. Communicating About Your Pain

Though finding the right medications may take time, it is important to work with your dermatologist to come up with an effective treatment plan. Finding an effective treatment plan may involve trying different medications to see which one works best for you. During this time, it is important to stick with the treatment plan for long enough to judge if it is really working. It is also important to tell your provider whether or not you are satisfied with the results. Many medications used to treat HS take three to four months of regular use before you will see the greatest improvement.

HS may also worsen over time. Your dermatologist will want to see you regularly to understand how you are doing, and to adjust your HS medications if needed. Though changing medications and taking time from work to attend visits can be difficult, it is important to remember that better treatment of your HS can also reduce your pain.

Your dermatologist may work with a team of other healthcare professionals to manage your HS pain. This may include your primary care provider, mental health professionals, pain management specialists, palliative care providers, or a clinical pharmacist. Table 20.1 highlights the role these providers may play in treating your HS. Working with these providers to develop a pain management plan is important, and may decrease the need for urgent care or emergency room visits. You, however, are the most important member of the care team. Communicating your symptoms and describing your pain are critical to ensuring they are addressed and properly treated. Please also see Chapter 13 for more information regarding multidisciplinary care.

Many people with HS have difficulty communicating details about their pain. Table 20.2 includes details that may help you communicate with your healthcare providers. If your HS pain is a concern, you should make sure to bring it up to healthcare providers during your visits.

IV. Managing HS Pain

There are many ways to manage HS pain.

The most important factor in reducing progression of HS pain is better control of the disease. Therefore, pain management begins with optimal disease control.

Though finding the right medications may take time, it is important to work with your dermatologist to come up with an effective treatment plan. Finding an effective treatment plan may involve trying different medications to see which one works best for you. During this time, it is important to stick with the treatment plan for long enough to judge if it is really working. It is also important to tell your provider whether or not you are satisfied
with the results. Many medications used to treat HS take three to four months of regular use before you will see the greatest improvement.

HS may also worsen over time. Your dermatologist will want to see you regularly to understand how you are doing, and to adjust your HS medications if needed. Though changing medications and taking time from work to attend visits can be difficult, it is important to remember that better treatment of your HS can also reduce your pain.

Your dermatologist may work with a team of healthcare professionals to manage your HS pain. This may include your primary care provider, mental health professionals, pain management specialists, palliative care providers, or a clinical pharmacist. Table 20.1 highlights the role these providers may play in treating your HS. Working with these providers to develop a pain management plan is important, and may decrease the need for urgent care or emergency room visits. You, however, are the most important member of the care team. Communicating your symptoms and describing your pain are critical to ensuring they are addressed and properly treated. Please also see Chapter 13 for more information regarding multidisciplinary care.

Acute pain may be treated with medications or procedures. Examples of medications used to treat acute pain include ibuprofen (Advil®) and acetaminophen (Tylenol®). Other treatments for acute HS pain include steroid injections into actively flaring sites and lancing swollen abscesses

(a procedure called “incision and drainage”). Many people with HS have also found relief with home-based strategies like applying warm or cool compresses to the skin or applying over the-counter menthol ointments (for example, Vick’s VapoRub®). When applying warm or cool compresses, avoid using very hot or very cold temperatures, as these may cause skin damage. Skin affected by HS is often less sensitive to temperatures compared to unaffected skin; using heating pads or putting ice directly on affected areas may damage the skin.

Although its use for HS has not been studied, topical use of cannabidiol (CBD) oil or cream is sometimes used to help relieve pain and discomfort. CBD is a chemical that is found in marijuana and hemp plants. It does not cause a “high” feeling; this is caused by a different chemical called tetrahydrocannabinol (THC). As none of the over-the-counter CBD products (hemp) have been approved by the FDA, there is no regulation of their purity or dosage. Do not apply these products to open wounds unless directed.

Treating chronic pain often requires combining multiple strategies, which may include the use of long-term medications. When using medications for a long period, it is important to consider their long-term effects. All medications, prescription or over-the-counter, can have side effects.

Because of possible side effects or your other existing health conditions, it is important to stick to the dosage and frequency instructions on medication labels, or as instructed by your doctor. When you need higher doses of over-the-counter medications or if you require prescriptions to properly address your pain, your healthcare team will help decide what amounts are safe. Paying close attention to warnings is important, and your doctor or pharmacist can help. It is important to discuss all medications you are taking with your healthcare team, even if they do not require a prescription. Table 20.3 describes important safety precautions when taking pain medications.

To know what to expect, you may want to ask your medical team how quickly your pain medications will begin working. If the medicines do not work within the expected time, you should tell your healthcare provider so they can make changes to the plan that meet your pain needs. Table 20.4 lists common types of pain medications and highlights safety precautions. This list is not exhaustive and we recommend discussing safety of all medications with your healthcare team.

In addition to medications and procedures, there are other strategies that may help reduce

pain from HS. These include psychotherapy to manage anxiety or depression known to worsen pain, as well as deep breathing, acupuncture, and mindfulness techniques.

Anxiety, depression, and feelings of distress often occur with HS pain and are important to address. Pain from HS may also cause feelings of distress, hopelessness, or sadness. These feelings and diagnoses may worsen pain. Working with a mental health professional or taking certain medications used to treat anxiety or depression may help your pain.

V. Developing a Pain Plan

People living with HS should work with their medical team to develop a pain management plan. Pain management plans are individualized plans that patients develop together with their providers to encourage shared decision making and address chronic and acute pain needs.

The chronic pain plan includes medications and strategies for dealing with long-term pain from HS, and may include medications, psychotherapy, and complementary strategies as discussed above. The acute pain management plan may involve procedures like steroid injections to active areas, drainage of unopened abscesses, as well as short courses of medications. The plan should include names of medications, safe doses, and guidance concerning how long the medications should be used. Table 20.5 includes suggested components of an individualized pain management plan that you may want to discuss with your provider.

You may work with any trusted member of your medical team (like your primary care provider or palliative care specialist) to develop an individualized pain management plan include input from your dermatologist and be shared with all members of your treatment team.

HS pain does not have to control your life. And we hope that the information in this chapter will help you work with your medical team to achieve better pain control.