Pain is a common problem for people with sickle cell disease. It happens when the sickle-shaped red blood cells that cause the condition get stuck in small blood vessels and block blood flow. That can cause a pain episode or crisis to start suddenly, usually in the lower back, arms, legs, chest, and belly. For others, health problems from sickle cell disease can cause pain that lasts longer and become chronic. Controlling pain associated with sickle cell can be difficult and could affect your mental health, causing stress and depression.
But no matter the type of sickle cell pain you have, there are many options that can help you find relief. Talk to your doctor about making a plan to manage your pain.
How to Manage a Pain Crisis
Most of the time, over-the-counter pain medicines like aspirin (Bayer, Bufferin), acetaminophen (Panadol, Tylenol), or ibuprofen (Advil, Motrin,Nuprin) can ease pain from an episode. (People under age 19 should not take aspirin, though.) There are some other things that may help, too:
- Drink water or other fluids when your symptoms start. Staying hydrated can help you head off the worst of an attack.
- Use a heating pad or take a warm bath.
- Try a massage, acupuncture, or relaxation techniques.
- Do something to take your mind off your pain. Watch TV, listen to music, or talk on the phone.
Most people can handle a pain crisis on their own at home. But if the pain doesn’t go away or is severe, you or your child may have to go to the hospital for more treatment. Your doctor may need to give you fluids through an IV, or they may prescribe more powerful painkillers.
Many doctors help people with sickle cell disease come up with a plan to manage pain episodes. It can guide you through specific steps to find pain relief on your own. It can also help other doctors, nurses, or paramedics know how to help you during an emergency. Ask your doctor to help you create one before an attack.
The drugs hydroxyurea (Droxia, Hydrea, Siklos) or voxelotor (Oxbryta), may keep pain episodes from happening as often for children and adults who take it every day. L-glutamine (Endari) may help you have shorter or fewer hospital visits for sickle cell pain. The most recent medication approved by the FDA is a monoclonal antibody called crizanlizumab-tmca (Adakveo). It is the first targeted therapy for SSD. It prevents red blood cell clumping thereby reducing vaso-occlusive crisis (VOC) which can cause pain as well as damage organs. Ask your doctor if either drug is right for you or your child.
Help for Chronic Pain
The long-term effects of sickle cell disease can cause painful problems, especially for adults. For example, poor blood flow can damage bones and joints and cause chronic pain.
To help you with chronic pain, your doctor may prescribe painkillers to take every day. They may also recommend physical therapy or orthopedic devices to support your back or limbs. And in some cases, doctors may recommend surgery to correct a problem that’s hurting you, or temporarily numb a nerve to give you relief.
Find Support for Sickle Cell Pain
Living with sickle cell disease can be hard, especially for children. People who are in pain often may have problems with anxiety and depression. They may feel singled out or left out of things others enjoy because of their condition. These feelings can add to other problems the disease can cause.
If you feel stressed, sad, or overwhelmed, counseling or psychotherapy may be able to help. Talking about your problems with a mental health professional can help you find reliable, healthy ways to handle pain and other challenges of sickle cell disease.
Also, ask your doctor or nurse about support groups where you can connect with other people and families living with sickle cell disease. Together, you can share what life is like with the condition, and get advice on pain relief and other challenges.