Managing pain
If you’re living with sickle cell disease, you’ll know that episodes of pain are one of the main symptoms.1,2 This sort of episode is known as an “acute painful crisis”.2 You may also live with ongoing (chronic) pain.2
In this article, we look at what causes painful episodes, how you can manage them, and some strategies to help you cope while living with chronic pain.
Pain and sickle cell disease
Pain is the most prominent complication of sickle cell disease.1,2 It can be short-lived (acute) or last longer and become chronic.1,2
Acute painful episodes are called “acute painful crises” or “pain crises” for short. They typically come on quickly and strong.3
Young children may develop pain in the form of swelling of the fingers and toes.4 But older children and adults often feel the pain in the arms and legs, lower back, or chest.3,4 The pain may stay in one area of the body or migrate to other parts over time.3
How long a pain crisis is and how often these painful episodes occur varies.2
Pain crises are the characteristic hallmark of sickle cell disease.3 But what causes them?
Sickle cell crises are caused by blocked blood vessels
People with sickle cell disease have red blood cells that are sticky and sickle banana shaped.5 These features make them build up inside blood vessels, forming clusters.1,2,5
When the clusters become too big, they can prevent the blood from flowing normally.2 Blood transports oxygen throughout the body. So, when the blood flow is clogged, parts of your body don’t get enough oxygen, which causes pain.1,2
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Pain prevention:
Medications and lifestyle choices
Your healthcare team can provide advice on ways to avoid pain crises, which may include medicines to help reduce the number you have.6 But medication is not the only option. There are steps you can take to help avoid painful episodes.
Pain crises may occur randomly. But they can also be triggered by factors such as too little rest, dehydration, or even the weather.7
Certain lifestyle choices can help you prevent painful episodes. They include7:
- Attending regular check-ups with your healthcare team
- Staying hydrated, i.e., drinking enough water
- Avoiding extreme temperatures (e.g., very cold or very hot/humid climates)
- Getting enough rest and avoiding stress
- Eating healthily
- Avoid alcohol and smoking
It’s also a good idea to avoid very strenuous exercise.7 Living with sickle cell may mean balancing the risk of pain with getting involved in activities you enjoy, such as outdoor sports and fitness. If you would like to know more about being physically active and exercising as a person with sickle cell disease, you might like to check out “Physical activity”.
Pain management:
Steps to help manage an acute crisis at home
- Taking over-the-counter painkillers (check with your healthcare team which ones you should take and how often)
- Drinking plenty of water to stay hydrated
- Keeping warm – take a warm bath or use a heating pad
- Distracting yourself to take your mind off the pain by doing something you enjoy
Going to hospital for a severe pain crisis
Some acute pain episodes can be severe.1,6 If you have an episode of acute pain that is severe, and you are not able to manage it using the steps mentioned above, you may need to go to hospital.1,6
If this happens to you, you can ring your doctor or head to your local A&E. You can also call 999 if you’re not well enough to get to the hospital yourself.6,7
Talk to your healthcare team about what you should do if this happens. If you don’t already have one, together you can make a care plan for managing severe pain episodes. You may want to carry a copy of this with you, to remind you what to do and let others know what treatment and support you need.
At the hospital, the healthcare team can give you the care you need and monitor you for any complications. It can be helpful to take information with you about your sickle cell and any treatments you take to make sure you get the right care.
Keeping a journal can help you work out things that cause your pain and things that help. Your Wellness Journal is a great place to note this down.
Chronic pain management
For some people with sickle cell disease the pain doesn’t go away. If pain persists for three months or longer, it is referred to as “chronic pain”.2
If you’re currently living with chronic pain, you probably have found some strategies with your healthcare team to manage it. In addition, you might also be interested in the following list of self-care strategies that may help you live better with
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Listening to and learning about the body
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Learning about the disease and how it works
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Making healthy lifestyle choices such as avoiding smoking and drinking alcohol
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Using alternative and complementary approaches to pain management such as relaxation techniques, massage, and exercise. Although the clinical benefits of these practices aren’t proven by research, they can help make you feel more in control because engaging in them means you take a more active role in your own care
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Building a social network that may include family, friends, and other people living with sickle cell disease to ensure you have emotional support when feeling poorly or low
Apart from that, everything mentioned above for managing acute pain episodes can also help with living with chronic pain. Keep talking with your healthcare team about ways you can manage your pain.
Finally, living with chronic pain can be difficult and often affects a person’s physical health but it can also affect how you feel.9 And, many people with sickle cell disease who have chronic pain develop depression.9
If you feel like your pain is affecting your psychological health and well-being, talk to your healthcare team. They will be able to advise you and refer you to a psychology specialist if needed.
Pain can be a part of living with SCD, but there are steps you can take to manage it. If you want to know more about strategies of dealing with pain, keep talking to your healthcare team. They will be able to advise you. And remember: You are in control.
- Top tips for self-management
- Your wellness journal
- Setting goals that work for you
- Getting the most out of your healthcare appointments
