Managing sleep and fatigue with epidermolysis bullosa

Due to the nature of epidermolysis bullosa (EB) and the constant forming and healing of blisters, it’s very likely that people living with EB will struggle with sleep and fatigue at some point in their life.

EB blisters at all stages are painful and uncomfortable. This can prevent sound and consistent sleep, which is very detrimental to quality of life overall.

The blistering and healing process, which is in constant cycle for people with EB, can also contribute to feelings of fatigue as the body is using its resources to heal wounds. This often leaves people in energy deficits and impacts their ability to carry out daily tasks.

When combined, these factors can have a significant impact on people with EB and how they live their life, although this can vary depending on the severity of individual cases. Fatigue and lack of sleep can have a big impact on other aspects of physical and mental health, so it’s important to make sure you’re aware of all the support you can access.

Our EB Community Support Team is always here to help however we can with practical and emotional support. If you’re struggling with emotional wellbeing, you can also have a look at the support resources on our website.

Sleeping with EB

We know that sleep plays a crucial role in the body’s ability to heal itself, but in the case of individuals with EB, some commonly reported barriers to sound sleep include pain, itch and excessive sweating.

Our website has more guidance about managing pain and itch, including resources on improving stress and sleep tips for people with EB. EB symptoms are more severe in warm conditions, so aids like fans, cooling pillows, breathable bedding and pyjamas can all improve quality of sleep and comfort. This is where our EB Community Support Team can help with support grants, that offer items to help you live better with EB.

Stress can also have a significant impact on the ability to sleep soundly, whether it’s stress due to EB or any other issues. Our EB Community Support Team are on hand to support our members with issues like benefits, housing, advocacy and other EB related topics, so you can both get the help you need and manage any stress you may be dealing with.

Managing fatigue with EB

Fatigue is extreme tiredness and exhaustion which impacts energy, as well as the ability to carry out tasks and focus. Most people experience fatigue in short spells but in people with EB, since their skin is constantly in a cycle of blistering and healing, their experience of fatigue can be ongoing and affect their overall quality of life.

There are also studies that link EB, especially in more severe cases, with Anaemia (iron deficiency) which causes chronic fatigue among other symptoms. 

If fatigue management is something you feel you need support with, this can be requested through your specialist EB team or GP. We have guidance on how you can access this specialist healthcare if you aren’t already under the care of one of the EB teams.

• Health professionals like occupational therapists, physiotherapists, and dieticians can also provide services which can support people with EB to improve their quality of life while living with fatigue.
• Occupational therapists can provide aids, adaptations and alternative methods of completing daily tasks which can reduce the amount of energy needed for day to day living. They can help you prioritise how you use your energy throughout the day (known as pacing), which can be helpful for people with long-term fatigue plan ahead for more challenging days to minimise its impact on them.
• Physiotherapists can provide exercises or equipment to improve strength and mobility, which over time can build up stamina and reduce fatigue from daily living.
• Dieticians can provide nutritional support for people with EB who are more likely to struggle with managing their weight or have nutritional deficiencies and ensure you’re meeting your nutritional needs. They can also prescribe supplements to improve EB related fatigue by fuelling your body to cope with the additional strain of constant blistering and healing.

We’ve also put together some tasty EB-friendly recipes from EB dieticians, to ensure the nutritional benefits can help people living with EB.

Extra resources

“Fatigue management and pacing: Information leaflet for families, children and young people with epidermolysis bullosa” – A leaflet from the EB team at Birmingham Women’s and Children’s Hospital, full of information and suggestions to help you better manage fatigue.

Page published: October 2024
Last review date: March 2025
Next review date: March 2026