There are many approaches to help lessen pain. Nonetheless, pain can be a real cause of stress and fatigue for people with a bleeding disorder. But by having ways to limit and control pain, you can gain confidence in managing a bleeding episode and the pain it may cause.
This section of Step Up covers:
What Impacts Pain?
Pain is an unpleasant physical and emotional experience. Pain is influenced by many individual biological, psychological, and social factors. Pain can be difficult to manage because each person feels and responds to pain in their own unique way. In other words, pain is a subjective experience.
- The extent of illness or injury
- The presence of other illnesses or conditions
- Genetics—the heredity traits and variations in humans
- Anxiety, fear, guilt, anger, depression
- Thinking the pain is due to something worse than it actually is
- Feeling helpless to manage pain
- How others close to you react to the pain
- The work environment or demands
- Access to medical care
- Cultural beliefs
Types of Pain
In general, people with bleeding disorders experience:
- Acute pain: short-term pain, often from an acute bleeding episode or after surgery
- Chronic or persistent pain: long-term pain, often from repeated bleeding episodes.
If allowed to go untreated or inadequately treated, pain can lead to more serious consequences. It can keep you from having fun with family and friends, learning in school and university, being effective at your job, and getting a good night’s sleep. It can have an emotional, financial, academic, and spiritual impact on everyone involved and can lead to feelings of helplessness and hopelessness.
Pain Assessment
Assessing your level of pain can be difficult because pain is always a subjective experience. Pain may be impacted by emotions, fear, stress, and anxiety. Often health care providers will use methods to help patients describe how much pain they have. One commonly used tool is a pain scale. There are many different types of pain scales. You might be asked to rate your pain on a scale from 1 to 10, with 1 being no pain and 10 being the worst pain you can imagine. Some health care providers might use pictures of different faces from a relaxed face scaled up to a picture of a face of a person crying. Other health care providers might have you fill out a survey. The survey will help identify how your pain is affecting your day-to-day life.
Pain Checklist
The following questions may help determine if pain caused by your bleeding disorder is affecting your daily life. Ask your health care provider or Hemophilia Treatment Center (HTC) team for help if you feel that your pain is disrupting your daily life.
- Are you often unable to participate in your favorite activities?
- Do you have difficulty sleeping?
- Do you have to stay home or in bed?
- Have you lost your appetite?
- Have you recently experienced a change in your mobility?
- Are you using crutches or a wheelchair?
- Are you often upset, short-tempered, or easily irritated by minor issues?
- Do you cry easily—sometimes not even knowing why?
- Do you generally feel sad or overwhelmed?
- Do you feel hopeless or like no one understands how you feel?
- Are you falling behind in school?
- Are you having trouble concentrating in class or on your assignments?
- Do you need to take frequent breaks while doing your assignments?
- Do you often have to cancel your plans with friends?
- Are you often alone?
- Have you isolated yourself from friends and family?
Pain Management
The first step to treating your pain is deciding if your pain is due to a bleed. If you suspect a bleed, take your bleeding disorder medication as prescribed. But note that sometimes people with bleeding disorders mistakenly treat chronic pain with their bleeding disorder’s medication. If unsure, take your medication as prescribed. But if your pain does not improve, it may be due to a cause other than a bleed.
Treat your child’s acute pain by the acronym P.R.I.C.E.: Protect, Rest, Ice, Compression, and Elevation.
- Protect. Your child should not be using or bear any weight on the affected body part. You can help them by using a splint or brace. If your child’s leg is injured, crutches can be helpful.
- Rest. Have your child avoid using the affected body part for 24 to 48 hours. If a bleed is suspected, you can continue to use the splint or brace to limit movement and further bleeding. Crutches can be helpful if the injury is in the leg.
- Ice. Apply ice to your child’s affected body part. Ice narrows blood vessels and works to reduce pain and swelling.
- Compression. Apply elastic bandages to your child’s affected body part. Compression works to reduce swelling and prevent further bleeding.
- Elevation. Keep your child’s affected body part raised or elevated above their heart. Elevation reduces swelling.
If you want more information about P.R.I.C.E., please go to this P.R.I.C.E. handout.
Physical Therapy
Physical Therapy aids in managing acute and chronic pain. Your physical therapist will establish an individualized treatment plan based on your pain management needs. Some of the activities can include pain education, manual therapy, myofascial release, therapeutic and corrective exercises, kinesio taping, orthotics, braces and splinting, or ergonomic and functional movement changes. Your physical therapist can also provide transcutaneous electrical nerve stimulation (TENS). During TENS, low-voltage electrical current is passed through the skin to stimulate nerves. This stimulation, which is not painful, is thought to mask pain signals. If appropriate, your physical therapist can also recommend TENS units for you to use at home.
Psychosocial
Sometimes the experience of pain can be influenced by underlying psychological (affecting the mind or behavior) or social issues. These can be addressed through specific treatments, such as cognitive behavior therapy, mindfulness, or acceptance therapy. There are also treatment options available for pain associated with infusions and injections, as these are often accompanied by needle fear and phobia. The social worker and/or psychologist at your HTC will be able to either provide pain management treatments or connect you with an appropriate healthcare provider in the community. Your social worker may also be able to help you navigate any barriers to receiving the pain management treatment you need.
The pharmacologic management of pain is the treatment of pain using a drug or non-food substance. This type of pain management includes over the counter (OTC) products, such as acetaminophen (Tylenol®), as well as prescribed medications. As a person with a bleeding disorder, you should not take aspirin, which can interfere with blood clotting. You also need to be careful with nonsteroidal anti-inflammatory drugs (NSAIDs), such as ibuprofen or naproxen. These drugs can also interfere with the blood’s ability to clot. Your health care provider may prescribe non-opioid pain medication. One example is Celebrex®, which is a COX-2 inhibitor safe for people with bleeding disorders. Opioids must be prescribed and monitored by a licensed physician.
Complementary and Alternative (CAM) pain management includes a broad range of methods, such as mind-body techniques and natural products. Many of these methods have not been widely researched. It is not fully known how well these methods work for people with bleeding disorders. However, they are often used in combination with more established pain management approaches and might aid in easing your pain.
Remember to always check with your health care provider before beginning any CAM therapy. This is especially important when considering taking any herbal remedy. Many herbs negatively interact with other medications, and directly affect the blood’s ability to clot.
