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Anyone who has ever experienced pain knows that pain has an effect on all aspects of your  life. It can affect your sleep, your ability to work, or your ability to attend school. Daily pain can affect you emotionally, to the point where you feel bad all the time and don’t want to hang out with friends. It can also affect your mood negatively, leading to depression or anxiety.

In order to treat pain, you should explore your own concerns about adequate pain management. There are several potential barriers that should be explored within yourself as you navigate through healthcare to obtain pain management.  Your own previous personal experiences of pain can “color” your current beliefs about pain management. Frequently in U.S. culture, boys are encouraged to “be tough,” and that “big boys don’t cry,” which can be the beginning of how you  show your pain from a bleed.

Many people worry about the potential harmful effects of any oral pain medicines, and would rather “tough it out.” These effects could include feeling drowsy when starting a new medication, possible nausea, constipation, and feeling like the medication could make you feel cloudy and make it hard to function.

Side effects can be managed by communicating with your provider, so that dosage adjustments or timing of medications can be made.  Many people don’t like to take any pain medication for fear of addiction.  Addiction is a neurobiological condition where someone craves the drug and continues to take it for reasons other than for pain, despite knowing that it may cause harm.

Understanding addiction can better help you understand how to take your medication responsibly.  Talk to your pain provider about these concerns. Many people may “tough it out” and save their pain medication for when they really need it, or feel that having hemophilia is just part of having to endure pain.   And many people fear taking any pain medication, and worry about what others may think of them, including their family, friends, and co-workers.  Some people may have pressure from family telling them they should not be taking pain medication because that makes them a ‘drug addict.’  This is not true. 

Pain is a physical response to an actual injury or change within your body. It is the body’s signal, telling us that something is wrong.Your job as the person experiencing pain is to talk with your provider and share your issues of pain and your concerns about treating it, so that you can work together as a team to improve your health and manage your pain.

Principles of Pain Management

  1. Have a comprehensive plan
  2. Explore the emotional and cognitive aspects of pain and pain management
  3. Listen to your body
  4. Pain is frequently undertreated, so explore those issues
  5. Individualize treatment for pain
  6. Set realistic and functional goals to reduce and manage pain
  7. Anticipate pain and treat it
  8. Patients should participate in pain management with their provider
  9. Incorporate a multimodal approach–do not just use oral pain medication, but other strategies such as relaxation, biofeedback, and stress reduction
  10. A multidisciplinary team approach assists in exploring all issues related to pain

As you are sitting down, reading this article, and realizing that yes, you have pain, think about your own experiences. What issues are you concerned about that may affect your ability to obtain appropriate pain management? Talk to your provider and work together towards a plan that works best for you.

Angela Lambing is a nurse practitioner for the past 21 years, working as the hemophilia nurse coordinator at Henry Ford Health system for the past 11 years.  Her passions in hemophilia care are focusing on the aging issues in hemophilia and pain. She has participated in research,  lectured and  authored many articles related to the hemophilia pain experience.


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