Pain in beta thalassaemia
If you’re living with beta thalassaemia, there’s a chance you may experience pain.1 This may be short lived (acute) or may last longer to become chronic pain.1
Because pain is not visible and people may just cope with it on their own, it hasn’t always got the attention it deserves in beta
If you have transfusion-dependent beta thalassaemia you are more likely to live with pain, but some people with non-transfusion-dependent beta thalassaemia have also reported pain.1,2 Whatever type of beta thalassaemia you have, letting your healthcare team know about any pain you have is important to make sure you get support for managing it.
Here, we look at what might cause pain and how to manage it.
Some people with transfusion-dependent beta thalassaemia may have lower bone density or osteoporosis and changes to the skeleton (like scoliosis, where the spine is curved), which can cause pain.1
As people get older, they may be more likely to have worse pain that lasts for longer than when they were younger.1,2
The source of pain might not be easy to find but if you let your healthcare team know about any pain you have, they can help you find a way to manage it.1
How to manage pain
- Taking over-the-counter painkillers (check with your doctor which ones you should take and how often)
- Exercising regularly (see our section on keeping active for inspiration)
- Eating well and getting all the nutrients you need (you’ll find an overview of what a healthy diet looks like in beta thalassaemia here)
- Relaxation techniques such as deep breathing, or progressive muscle relaxation
- Physical therapy that aims to increase your muscle strength and movement
- Acupuncture and massage
You may have found other ways to manage pain too. Just remember that some pain could be a sign you need immediate care – so always get pain checked out by your healthcare
Aisha, living with beta thalassaemia major in the UK
Chronic pain management
For some people with beta thalassaemia, the pain doesn’t go away. If pain persists for three months or longer, it is referred to as “chronic pain”.2 Chronic pain can begin to interfere with other parts of your life but finding ways to manage it can
All the options listed may help with chronic pain. But you may also feel the need for more support. This might include counselling, for
You might also need to make some adjustments at work that help you manage your pain.1 See our section on Moving forward at work to get to know your rights when asking for adjustments in your workplace.
Having the support of others can help when managing chronic pain. Connecting with others going through a similar experience could help. Try our community page to find groups and organisations that connect you with others living with beta thalassaemia.
Living with chronic pain can be difficult and can often affects a person’s mental
You can find out more about how beta thalassaemia may affect your mental health here.
Take steps to manage your pain
Pain may be part of your beta thalassaemia but there are steps you can take to manage it. Finding ways to manage your pain can help you find the balance between managing beta thalassaemia and living your life.
If you want to know more about how you can manage your pain, talk to your healthcare team. Together, you can find a way forward.
Resource Hub
Our downloadable tools and guides will help you manage your life with beta thalassaemia
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