Pain experienced because of XLH varies from person to person and over time, but drug treatments and other therapies can help you cope.
Drugs alone are not usually the answer, partly because their usefulness has to be balanced against side effects. If you can describe pain well, both to health professionals and those around you, there is more chance it can be managed.
Keeping a pain diary has lots of benefits, it lets you share with your doctor details about your symptoms, which you may otherwise forget.
Describing Pain
If you can describe pain well, both to health professionals and those around you, there is more chance it can be managed.
Musculoskeletal pain is the pain in muscles and joints that comes from living with the stresses and strains XLH places on the body. It can be acute (starts suddenly, but then gets better or goes away) or chronic (ongoing, long-term pain that never completely goes away).
You may be asked to rate the intensity of pain on a ten-point scale, where 1 is negligible and 10 is overwhelming. Try to record if there are specific activities or movements that trigger pain episodes.
To find out more about how Exercise and Physiotherapy can help with pain
Other Treatments and Therapies to Consider
Analgesic painkillers: Drugs like paracetamol, aspirin, ibuprofen, and codeine can help control pain. Opioids such as tramadol are occasionally used for acute pain.
Transcutaneous Electrical Nerve Stimulation (TENS) This is a way of providing short-term pain relief that involves a small, battery-operated machine. Stimulation of the nerves can disrupt pain signals going to your brain and spinal cord and can relax your muscles.
Acupuncture You can get acupuncture through some GP surgeries, pain clinics and physiotherapists. It comes from ancient Chinese medicine, and involves sticking fine needles into specific points on your body. This makes your body release its own natural pain killers. You can use acupuncture to treat migraines and musculoskeletal problems like back pain.
Hypnotherapy A professional hypnotherapist can lead you into a deeply relaxed or ‘hypnotised’ state and suggest how you can improve how you feel when you come out of it. You can’t normally get hypnotherapy on the NHS. Find qualified, insured hypnotherapists who are registered with a professional body here
Chiropractic A registered practitioner (chiropractor) uses their hands to help relieve problems with your bones, muscles and joints.
Osteopathy A registered practitioner (osteopath) uses their hands to move, stretch and massage your muscles and joints.
Massage and reflexology (where pressure is put on specific areas or ‘zones’ of your feet and hands) can both be effective at releasing tension in muscles and associated pain.
Pain clinics: specialise in helping you find ways of coping, managing and adapting to living with pain. They’ll help you lessen its impact on your quality of life.
Occupational therapy: there may be adjustments that can be made to your living or working space that help to reduce pain. Ask your employer for an assessment.
Mindfulness meditation offers a different way of approaching and thinking about your pain. There’s a special eight-week programme called ‘mindfulness-based stress reduction’ for people with chronic pain. It’s taught by instructors in hospitals. There’s a free online version (with audio meditation tracks that you can follow) here
Cognitive Behavioural Therapy (CBT) is a talking therapy, sometimes available on the NHS. You can get it on a one-to-one basis with a professional psychotherapist, or participate in a group or online. CBT is now frequently recommended to manage chronic pain and fatigue. Because pain affects thoughts, feelings, behaviours and physical reactions, CBT works with the idea that these are closely connected and influence each another. You can find a list of registered therapists through the Association of Psychotherapists.