Sickle cell disease: Letting your body adjust to activity

PDF download is not available for Arabic and Urdu languages at this time. Please use the browser print function instead

Learn about creating an activity plan that helps you build up your activity level over time, how to know if you've done too much activity and what to do if you don't feel you have enough energy to be active.

Key points

  • Sometimes, you may experience discomfort if your muscles need to get used to doing certain activities. Other times, discomfort during or activity may signal a pain flare. Your health-care team can help you learn which pain messages to pay attention to.
  • Building up your activity level over time can make you less likely to have pain flares after you exercise.
  • Being active, even when you are tired, can help you stay alert during the day and fall asleep faster and have better quality sleep at night.
  • Use a gentle approach to creating your activity plan and follow the plan consistently to reach your goals.

It's normal to feel some discomfort during and after activity. You might feel the discomfort as muscle tightness, muscle ache or fatigue. Self-management strategies such as stretching, breathing exercises, positive self-talk ("I can do this!") and appropriate rest and nutrition can help you function well after activity.

Sometimes your muscles just need to get used to doing certain activities. Whey they do, the discomfort goes away. You will know this if you can return to your baseline or usual level of functioning within 24 hours. Other times, the aches and pains may be signaling a pain flare. You know your body best. If you believe you are experiencing the beginning of a sickle cell pain flare, make sure to use your pain management skills.

You might not always get the right balance of activity and rest; everyone overdoes it once in a while. Remember that no one is looking for perfection. If you have a special occasion or big game that is important to you and you know you will likely feel a little bad the next day, then plan some extra stretching or resting before and after. Over time, you can build up your activity level. If you do this, you will be less likely to have pain flares after you exercise.

How do I know if I have done too much activity?

Blue, bean-shaped Copey character in martial arts uniform, standing in front of broken wood on cinder blocks

One of the most important parts of managing pain is learning how to tell the difference between the pain that means potential harm and the pain that does not. This is one of the hardest things for teens with sickle cell disease to find out, especially because pain may be different for each person.

We know that we process pain differently as pain persists, and that you cannot always rely on pain signals to tell you if your body is safe or not.

Your health-care team can help you learn which pain messages to pay attention to during and after activities. One of the important questions to consider is, “Was I able to function the next day?”

What if I don't feel able to start an activity?

You may not feel confident that you can do regular activity. Your pain may increase when you do certain activities, or you may never feel that you have enough energy. Ask for help from your health-care team if you are struggling to develop an activity plan.

Daytime activity and sleep

People who don’t sleep well during the night are often tired and fatigued during the day. These people often don’t have enough energy to be active during the day, and so they choose to do very little exercise or other activity.

Some people believe that when they are sleepy, they need to save their energy by not exercising, and that this will help them make it through the day.

The opposite is true: You need to spend energy (be active) to make energy!

Being active (for example, going for a walk), even when you are tired, has several benefits. You will typically fall asleep faster, have better quality sleep and stay asleep longer.

The more active you are, the easier it is to stay alert and be less sleepy during the day.

Progressing to the next level

Your approach to your graded activity plan is exactly that—yours. When you use a gentle approach, any goal can be broken down and achieved if you are willing to follow your plan consistently over the long-term.

If you are feeling amazing and like you can walk for longer than your goal time—don’t! Stick to your plan. If you are feeling lousy and that you can’t carry out your daily goal—try it anyway! That is why gentle small goals are so important.

Last updated: January 16th 2024