Handling pain

You are not alone in dealing with pain that XLH may bring. There are a number of ways to ease XLH-related pain, and professional support is available too.

Pain is a major part of life with XLH. For some, the pain can simply cause mild discomfort, while for others it can stop them in their tracks. 

People with XLH get different types of pain in different parts of their body. Bone and joint pain tend to occur in the lower limbs and back while, in addition to these areas, joint stiffness can affect the shoulders and neck.

Why am I in pain?

There are a number of different reasons why someone with XLH might have pain:

  • Bone pain can be due to soft bones (osteomalacia) stress or insufficiency pseudofractures. 
  • Joint pain tends to be caused by arthritis and enthesopathy. Enthesopathy is a condition involving the area where the ligament attaches to the bone. It could be caused by bone overgrowth where the ligament attaches, or the ligaments themselves might be ‘calcified’ due to a build-up of calcium and phosphate. When enthesopathy occurs in the spine and spinal ligaments it can lead to severe back pain.
  • Bone misalignment (bowed legs or knock-knees) can lead to pain at various locations in the lower limbs.
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Managing pain

Pain can be managed in many different ways. Obviously, there are medicines that can help but there are other options, such as physiotherapy or surgery, which can also help to reduce your discomfort. When you talk to your specialist try to identify the source of your pain. Is it bone pain? Is it joint pain? Is it due to muscle weakness? Also, don’t assume all pain is due to your XLH – there may be some other reason.

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Keep a pain diary

Keeping a pain diary is a really useful way to keep track of how you’re feeling and as a reminder of your symptoms for when you talk with your specialist doctor. The more he or she knows about the type and location of your pain and how often you experience it, the more they can do to help.

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Medicines & painkillers

Research shows that phosphate supplements and calcitriol can reduce bone pain so, if you have symptoms, keep taking your medicines as recommended by your specialist doctor. 

If you have stopped taking your medicines, speak to your specialist as he or she may suggest that you restart treatment. 

Your family doctor or specialist can advise on appropriate medications or prescribe if necessary painkillers such as acetaminophen (also known as paracetamol), and non-steroidal anti-inflammatory drugs (NSAIDs) like ibuprofen. 

Remember to tell your healthcare team if you are taking any non-prescribed medicines – this includes any pharmacy or complementary medicines, such as homeopathy or herbal treatments.

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Non-pharmacological pain management

Pain doesn’t always have to be managed with medicines. There are many ways that may help to reduce pain that are worth considering, such as exercise, physiotherapy, stretching, warm-water exercise, applying heat to sore areas and counseling.  You should consult your healthcare team for advice before engaging in any of these therapies.

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Physiotherapy

Your specialist doctor may recommend, or refer you to, a physiotherapist. It’s important that your physiotherapist is fully aware that you have XLH before you start any treatment, and that they understand the condition’s complexities.

Improving joint stability
Physiotherapy can help reduce pain by improving joint stability and flexibility, and by strengthening your muscles. It can also help you address pain caused by posture or movement. 

Increasing your muscle fitness can help improve the stability of your joints. Take a look at this article on exercise and talk to your healthcare team or a physiotherapist about the type and level of activity that’s right for you.

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Support with pain and your mood

Research suggests that adults who take their medicines (phosphate and vitamin D) regularly tend to have better emotional and mental health than those who do not – although it’s not possible to say whether the treatment is responsible, or whether people who feel better are more likely to take their treatment. 

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Don’t suffer in silence

If pain or lack of mobility is getting you down, talk to your healthcare team for help. They will be able to help you with your mood and address any pain or mobility issues. 

Make sure you talk to someone. It doesn’t have to be formal, although psychological therapy has been shown to help people with all sorts of health conditions manage their long-term pain. 

Tell friends and family what you’re going through, too. Discuss ways in which they can provide both emotional and practical support. Also, you might like to share your experiences with people in the XLH community who can provide advice about pain management. 

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