Duchenne affects every part of your body. Understanding pain can be tricky, but understanding pain in the context of Duchenne can be especially tricky. This section hopes to help to define, identify, assess, and help manage your pain throughout the lifespan of Duchenne.
Many people try to ignore or deny pain. Pain is the body’s way of letting you know that something is wrong – it is important to recognize and address pain when it occurs.
Managing Pain: Facts to Remember
- Recognize that you are in pain.
- Assess the pain using an age-appropriate scale.
- Alert care providers that you are experiencing pain, providing them with all the information that you have gathered.
- Manage the pain according to your care provider’s instructions.
- Keep your care providers up to date, especially if the pain is changing in character or getting worse.
Understanding Pain and Duchenne
Many people living with Duchenne complain of pain. In a recent study of 55 patients ages 12-18 years old living with Duchenne or spinal muscular atrophy (SMA), 55% complained of mild/moderate, persistent or chronic pain1. Previous studies have reported that 54-80% of patients living with Duchenne suffer from mild to moderate aching pain for more than several hours daily2. Chronic pain has been shown to impact quality of life, psychosocial functioning, and activity3, increasing social isolation and affecting independence and identity4. Clearly, pain is an under-recognized aspect of Duchenne and should be part of every medical evaluation.
Types of Pain
It is important to identify what type of pain you are experiencing. Pain that accompanies Duchenne can generally be described in two ways:
This type of pain comes on suddenly usually as a result of disease, inflammation, or injury. It is usually accompanied by anxiety, fear, and/or emotional distress. Acute pain can go away suddenly or gradually, or it can become chronic pain.
Chronic pain persists over a longer period of time and is less able to be controlled by medical treatments; can be made much worse by environmental and psychological factors; and can impact activities of daily life and quality of life.
Because pain is a subjective sensation and is perceived differently by everyone, it is necessary to develop methods of assessing the different aspects of pain for yourself. You know yourself better than anyone else and this will help you to recognize signs of pain or distress. If you are experiencing pain, it is important to assess that pain. Some questions that you need to ask are:
- Is there pain?
- Where is the pain?
- On a scale of 1-10, with a #10 being the worst pain you have ever had, what number would you rate this pain? (Alternate scales will need to be used for infants, children, or non-verbal persons)
- Infants (0-2 years old) Modified Behavior Pain Scale5
|Facial Expression||Definite positive expression (smiling)||0|
|Slightly negative (grimace)||2|
|Definite negative expression||3|
|Moaning quietly, whimpering||2|
|Rested & relaxed||0|
|Partial movements (squirmy, arching, tensing, clenching)||1|
|Attempting to avoid pain||2|
|Agitation with complex movements involving the head, torso or other limbs; rigidity||3|
- When did this pain start? Is this new pain or pain that you have had before?
- Do you know what might be causing this pain?
- What makes this pain worse? Have you done anything to try to make this pain better? Did it work? If you have had this pain before, what might make this pain better?
Who Can Help Manage Pain?
Depending on the cause of your pain, there are many medical providers that can assist with management.
What Can Cause Pain?
We have engaged the assistance of several experts in Duchenne from across the U.S. to develop the chart below. This chart identifies possible causes of pain/discomfort for children, teens/tweens, and young adults/adults living with Duchenne. It is by no means comprehensive and should never take the place of a medical consultation, but it may give you some clues and places to start in the evaluation of pain.
Download the Pain Chart (PDF) to browse through it (you can also open it in a larger window).
Tips to Help Avoid Pain
- Stay hydrated.
Dehydration is known to aggravate many causes of pain. Dehydration can cause headaches, increase back pain, and can lead to the development of stones in the genitourinary (GU) tract. Drinking water is very important to your health.
- Eat a healthy diet.
Eating a balanced healthy diet will aid in digestion, help to prevent constipation, and will assist in weight management, which may help with some musculoskeletal pain.
- Stay active, flexible, and in proper alignment.
Continuing physical therapy and using AFOs (ankle foot orthoses) will help to keep the body flexible and in proper position/alignment, which will help to prevent pain.
Stress has been demonstrated in many studies to cause or worsen pain in all people. It’s important that you find a way, and some time in each day, to relax. Go outside, play, read a book, listen to music, do simple yoga, or meditate – whatever works for you will help to manage life and pain.
- Spend time together as a family every day.
Spending time together as a family and communicating helps you to be more resilient to stress. As stress worsens pain, you will be helping manage both!
- Make sure you/your child is correctly using appropriate equipment.
Ill-fitting AFOs, not supporting the spine and wheelchairs that are not appropriate in size or support will cause and worsen pain. It is very important to have, and use, equipment that is prescribed. You should also follow up with your physical therapist or rehabilitation doctor regularly in order to maintain proper equipment and assistive devices.
- Get some sleep.
Studies have evaluated the complex link between sleep and pain, showing that each can worsen the other6. It is important, when seeking methods of management, to manage both sleep and pain.
People living with Duchenne should see their pulmonologists and receive pulmonary function tests at least once a year after age 6. Decreased levels of oxygen, either from obstructive sleep apnea or hypoventilation, will result in sleep-disordered breathing which affects sleep. It all works together, so make sure that breathing during sleep is optimized.