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For people living with sickle cell disease (SCD), pain can sometimes be severe, unpredictable, and disruptive to daily life. That’s why some people opt for a holistic approach to pain management that includes complementary therapies.
Some complementary approaches may help ease pain, support overall well-being, or help you feel more in control. However, they should be used alongside, not instead of, the treatment recommended by your healthcare team.
That said, not every complementary approach is helpful or safe, and what works for one person may not work for another. Here are some complementary approaches that may be useful in building your personalized pain action plan.
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As you know, having SCD causes you pain that’s complex and not easily resolved. That’s why you may need more tools in your arsenal to support your well-being. Here are some complementary therapies that may help you address the needs that are most important to you.
Mind-body strategies are at the top of the list of ways to complement treatments that don’t require more pills or injections. Mind-body strategies allow you to take control of your thoughts and relax your body.
In fact, one small study of 70 people found that learning mindfulness techniques could potentially support mental health and reduce pain, anxiety, and depression in people with SCD. Here are some mind-body strategies you may want to try:
The idea of moving around may be overwhelming. But physical activity may be helpful. It may improve your blood flow and could potentially improve your strength and flexibility — all key components in reducing pain when it occurs. Here are some movement strategies that may help.
Other strategies may also help, but some are more invasive or need more research. Talk with your healthcare team before trying them to make sure they’re safe and fit your treatment plan. Here are some to consider:
Some people with SCD have found that taking L-glutamine can be helpful. This amino acid, which is either sold as a supplement or prescribed by your healthcare team as the medication Endari, may be able to reduce the number of pain crises you experience. Your healthcare team can let you know how best to take it.
When you have SCD, it’s also possible to develop some nutritional deficiencies, such as being low in zinc or fatty acids. In fact, some early research shows taking zinc or fatty acids may be helpful, especially for kids.
For instance, one study found that taking zinc improved growth and reduced infections in kids with SCD. Meanwhile, other studies suggest that taking omega-3 fatty acids could potentially reduce sickle cell pain and pain crises in kids.
There are other supplements being researched, like the use of curcumin, coenzyme Q10 (CoQ10), and arginine. But most of the research has been conducted in mice or is limited. More research is needed before these supplements can be recommended as safe options.
Finding ways to feel more comfortable and manage the challenges of sickle cell disease is a deeply personal experience. What feels helpful and supportive for one person may not be the same for someone else.
This scenario particularly applies to dietary supplements. Some people will have positive experiences taking dietary supplements while others might experience complications or setbacks. The key is practicing caution and involving your healthcare team from the start.
It’s important to be aware that some supplements may be marketed as natural products or have labels indicating they’re made from natural sources. But natural doesn’t automatically mean they’re safe for you.
For instance, herbal and other dietary supplements don’t have to be approved by the U.S. Food and Drug Administration (FDA) before being sold to the public. This means there’s no way to know for sure if they’re safe, do what they say they will, or contain what they’re supposed to.
Sometimes supplements will also have potentially harmful ingredients or the company will mislabel their product. This can lead to allergic reactions, serious complications, and even emergency room visits.
Some companies will promise a cure or make false claims about what their product can do. Being aware that this deception exists will help you make wise choices and prevent you from delaying treatment. Here are some signs of a scam or potentially harmful product.
Some nutritional supplements may also cause adverse side effects like GI issues or general discomfort, while others may cause serious harm to your body. For instance, the kava plant is often used for anxiety, but scientists have found it may be associated with liver damage.
The National Center for Complementary and Integrative Health offers a database of herbs and botanicals that you can reference before trying a supplement. It’s also a good idea to talk to your healthcare team before trying something new.
Some supplements might even interfere with your current medications. So it’s generally a good idea to make sure you know how they may interact when taken together. Your healthcare team or a pharmacist can answer any questions you have.
If you find a supplement that eases your symptoms, let your healthcare team know. They can help make sure it doesn’t interfere with your prescription medications or other treatments.
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