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Pain crises in sickle cell disease

ON THIS PAGE:
Pain is part of living with sickle cell disease
What causes pain crises?
Avoiding pain where possible
Managing a pain crisis at home
Managing chronic pain

Pain crises in sickle cell disease

Pain is the most common symptom of sickle cell disease and can be short-term (acute) or long-term (chronic).1 If you are living with sickle cell disease, you probably experience pain frequently.1

For this reason, we would like to show you what causes acute pain crises and chronic pain and how you can tackle or prevent them.

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Pain is part of living with sickle cell disease

Acute, severe pain, which appears suddenly, is the most common complication of sickle cell disease.1 However, you may also suffer (in addition) from persistent (chronic) pain.1,2 The pain may affect certain areas of the body more frequently according to age. Babies and toddlers often develop painful swelling in the fingers and toes, while older children and adults are more likely to experience pain in their ribs and thighs, for example.1-3

How long a pain crisis lasts and how often they occur is different in each person with sickle cell disease.1,2

What causes pain in sickle cell disease?

Pain crises are caused by blocked blood vessels 4

The sickle-shaped blood cells that are characteristic in people with sickle cell disease struggle to move through the blood vessels.4 If they stick together, then they build up to form clots in the blood vessels.4

These deposits can become so large that the blood is no longer able to flow through the veins unobstructed, and the veins become blocked.4 When blood flow is restricted, parts of the body are no longer supplied with enough oxygen, which causes tissue damage and pain.4

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Avoiding pain where possible

Medicines and certain behaviours can help

Pain and pain crises can be reduced.1,2 Your doctor and other people with your disease can give you tips on specific measures you can take. For example, there are medicines that can help to reduce the number of pain crises.1,2 However, medication is not your only option!

Pain can also be triggered by external factors such as overexertion, dehydration, or even the weather.5

Examples of how you can prevent pain crises:1,2,5

  • Drink enough fluids and maintain a healthy diet
  • Avoid extreme temperatures
  • Get enough rest and perhaps use a relaxation technique that suits you

It is important to balance the risk of pain crises and the desire to do exercise that you enjoy and that is good for you.1,2,5 However, some types of sport are not suitable for people with sickle cell disease.1,2,5 For this reason, you need to be careful about the types of activity you choose to do. Having said that, people with sickle cell disease can and should stay active - and ideally have fun in the process!5 The "Physical activity" page describes the benefits of staying active.

Pain management

Managing a pain crisis at home

Sometimes, you will be able to manage pain crises yourself at home.1,6 Your treatment team and other people with sickle cell disease will be able to give you some tips on how to do this. You should keep talking to them about this.1

What you can do yourself at home:

  • Over-the-counter painkillers recommended by your doctor can help you to manage the pain.6
  • Try to relax, e.g., using massages or autogenic training.6
  • Keep warm,6 but remember to avoid excessive heat5.
  • Make sure you are drinking enough!6
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Severe pain crises must be treated at the hospital

Pain crises can sometimes be very severe. If you are having a pain crisis and are unable to manage it on your own, you should go to a hospital,1 where your pain can be treated more effectively.1 You will also be monitored there, and should any complications occur, you will receive the right treatment immediately.1 It is important for the doctors at the hospital to know that you have sickle cell disease so that you can receive the best possible treatment. It is therefore very helpful if you have information about your ongoing treatments with you. It may also be useful to have your doctor write a letter that you can show at the hospital. It is definitely advisable to draw up a plan with your doctor, which tells you what to do in unusual pain situations. In the event of an emergency, you should always dial 112.

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Keeping a diary can help you understand what can trigger your pain and what helps you during a crisis. A well-being diary like this is the perfect place to make personal notes.

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Managing chronic pain

When pain persists for three months or more, it is referred to as "chronic pain".7

Some people with sickle cell disease even have constant pain.1,2 If you suffer from chronic pain, you will certainly already be receiving treatment for this from your doctor. In addition, there are strategies that you can implement yourself to make life with chronic pain easier.

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  • Get to know and listen to your body: in what situations does pain occur or become more severe?
  • Avoid smoking and drinking alcohol.5
  • Try out additional pain management methods, such as relaxation techniques, massages and physical activity.5 This could also give you a feeling of control because you are taking the management of your disease into your own hands.
  • Build yourself a social network that provides you with positive support. This might consist of your family, friends or other people living with sickle cell disease. These people can raise your spirits when you are not feeling good.

In addition to the strategies for chronic pain, methods used to manage acute pain crises may also be helpful.1,2,5 Your doctor will certainly be able to advise you on which strategies will be most effective in managing your pain.

Chronic pain can have a significant impact on your mental health; many people with sickle cell disease who have chronic pain can suffer from depression.8

Talk to your doctor if you feel that your disease is impacting your mental health.

Your treatment team will be able to advise you and refer you to a psychologist, where necessary.1 Find out here what you yourself can do to support your mental health.

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Even though pain may be part of life with sickle cell disease, there are methods that can be used to manage it more effectively.1 And there are lots of things you can do yourself to help!

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Resource hub:
  • Top tips for self-management
  • Your wellbeing diary
  • Set targets that work for you
  • Get the most out of your medical appointments
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The website Realtalk! Sichelzellkrankheit is intended to support you with as many questions as possible about sickle cell disease.