06 May Rules for Living with a Child with Chronic Pain
Function First Pain Second
The overall goal of chronic pain management is to improve functioning! This means functioning in all aspects of life, school, social, physical and family. We measure improvement by improvement in functioning, days of school attended; decreased stress at home, improved mood, fewer missed social events, and ease in doing the things in your life that you want to do.
Pain makes you want to curl up in a ball and heal. Chronic pain makes you want to do that all the time. The more you give in to your chronic pain the more it will control you. Don’t let it, fight back little by little. Every time you do even the slightest thing that your pain tells you, you can’t, your brain has to figure out how to turn down your pain enough to make it happen. The more you exercise the pain control part of your brain, the better at it you get.
Pain control is a tool to improve functioning but not the goal. Therapies that improve pain but decrease functioning are usually counterproductive.
Mom & Dad: Don’t Ask How They Feel
The general concept is that the brain of someone with chronic pain is already paying too much attention to the nerve signals from their body. They don’t need you to remind them that they feel terrible. If you really think about it, you know that they are not feeling well when you look at them. As the goal of chronic pain therapy is to focus on function keep you questions in terms of function not feeling. You can ask “Is there anything you need from me?” This question makes the person think about their needs not how they are feeling.
Sleep is Key
Your nervous system needs deep sleep to recover from the stress of the day. Without good sleep your system becomes more sensitive. Keeping your sleep clean is essential
1. Going to bed the same time and waking the same time each day.
2. Only sleeping in your bed and not doing anything else (homework, eating . . ).
3. Turning off all electronics 1 – 2 hours before going to bed.
You are made mostly of water. Drinking plenty of water reduces fatigue, improves muscle function, and reduces headaches. You know that you have had enough to drink if your urine is light colored (given you are not taking large doses of B vitamins then it will be neon yellow).
Go to School
The question is not, weather you can go to school or not, but how much school can you get through today. The more a child or teen with chronic pain attends school the more likely they are to do well over time. Although it can be annoying and stressful, with modification it can be good distraction to get you out of your own head.
Move Your Body
Walking, biking or swimming are all examples of non-impact aerobic exercise. This type of movement can improve mood, improve sleep and lessen pain. This is also often the most difficult thing to do when you are in chronic pain. Figure out what you can do even if it is 5 minutes or less and start there. Gradually increase and your nervous system figures out how to tolerate it. The goal is to be exercising at a level where you are breathing hard and breaking a sweat without losing the ability to have a conversation. Physical therapy can often help get you started but it is up to you to keep the ball rolling.