XLH and Sleep

X-linked hypophosphatemia (XLH) is a rare genetic disorder caused by mutations in the PHEX gene that results in the loss of phosphate through the kidneys, affecting patients’ bones and teeth.

Pain and stiffness are known symptoms, and can be severe enough to disturb sleep. A small survey of 18 adults with XLH looked at how the disease affects different aspects of daily life, and six of these 18 patients (30%) reported problems with sleep.

How may XLH affect sleep?

XLH can affect sleep through the chronic pain it causes. Pain can make it difficult to fall asleep, have restful sleep, or prevent sufficient hours of sleep each night.

Pain in XLH can be caused by osteomalacia (soft bones) leading to pseudofractures, calcification of  ligaments (enthesopathy), and bone misalignment, especially of bones in the legs and ankles. A survey study of 232 adult patients and 90 caregivers of children found bone or joint pain reported by 97% of the adults and 80% of children/caregivers.

Treatment schedules can also affect sleep. An analysis of responses from patients and caregivers in the U.K., U.S., and Australia found treatment schedule caused sleep issues, especially for children. Several patients/caregivers reported needing multiple treatments — or needing to take the same medication multiple times each day — with dosing schedules that interrupted sleep.

Having a chronic condition such as XLH can also lead to stress and anxiety as well as depression, all of which are known to work against restful sleep.

Tips to improve sleep

Here are some suggestions for improving sleep quality.

Managing pain

Calcitriol (an active form of vitamin D) and phosphate supplements are seen as ways to ease bone pain and osteomalacia.

Non-steroidal anti-inflammatory drugs (NSAIDs), and injections of medications directly to painful joints can also help.

Low-impact exercise and physiotherapy help to strengthen the muscles, as well as make joints more stable and less prone to pain.

Lowering stress levels

Stress, anxiety, and depression can make it difficult to get sufficient or restful sleep. Patients may benefit by consulting a therapist to learn techniques to help with stress and anxiety, and to promote self-care. People with signs of depression, which can be a serious illness, should talk with a doctor.

Finding a support network that allows you to share experiences with others with XLH, and seek advice, can also help with manage stress.

Practicing mindfulness may also help to relieve stress and anxiety.

Other tips

Talk with your doctor if you or your child is having sleeping problems. They may be able to prescribe a sleep aid or modify treatments that could be interfering with sleep patterns.

Lowering your consumption of caffeine, nicotine, and alcohol, especially in the evening, can also help improve sleep quality.

Having a comfortable mattress may allow for more restful sleep.

Finally, limiting screen time in the hours before bed can help with sleep.

Last updated: Nov. 6, 2020

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XLH News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.