Tips on Coping with CRPS

Complex Regional Pain Syndrome can be terrifying for young people. Not only are you in intense pain, but you also face unique challenges that many adults do not. CRPS can affect your daily lives; here are some examples of how:

• You may miss school and be forced to catch up on schoolwork.
• You may need help to participate in hobbies you enjoy or after-school clubs.
• You may find people at school who don't understand; they may comment or say you are making it up.
• You have multiple doctors and hospital appointments, and what they tell you may be challenging to understand.
• You might feel lonely because you cannot see your friends as much.
• You might worry about the future and how you will manage at college/university or in a full-time job.
• When you're sad, it feels like there's no one to talk to and that no one understands your problems or the pain that you are going through.
   

Flare Box

You can fill this unique box with all the things that help you get through a flare-up, whether that be an iPad, music, hot water bottles or chocolate. Every box will look different - it is about what works for you.

You can keep this box close to your bed to be easily accessible when your CRPS symptoms flare up.

Warmth

People with CRPS syndrome often find relief from heat; they can use a hot water bottle, heat pad, or heated blanket. This is especially helpful in the winter months.

Ensure you use these items safely and avoid applying extreme heat directly on your skin.

Pacing

Pacing helps patients manage their activity levels and take breaks when needed. You may plan extra rest ahead of strenuous activities or busy days.

You can break your tasks into smaller chunks. Someone with Complex Regional Pain Syndrome is unlikely to complete a task in one day.

For example:

• Fold a few laundry items at a time.
• Do the preparation for meals, like chopping or measuring, the day before cooking
• Instead of doing all your chores in one day, do one task per day.

Talking

It can be heartbreaking for your family to witness your struggle with CRPS pain. They may feel powerless due to their inability to help you.

Try to talk to your family, and tell them what they can do to help you. This can not only offer you the support that you need, but it can also help them to feel like they are making a difference.

Routine

People diagnosed with CRPS can no longer partake in their daily routines due to chronic pain.

This is why alternative routines often provide an anchor to build up all of your daily activities. A consistent pattern is essential when caring for yourself, spending time with loved ones, and enjoying your hobbies. It helps with your overall well-being.

Sleep

Sleep is an essential part of life and contributes to us feeling well both physically and mentally. A dysfunctional sleep pattern can worsen your pain, and you can get trapped in a cycle of inadequate sleep and chronic pain.

Here are some tips for getting a better night's sleep:

• Do not force yourself to go to sleep; this will only make your body more alert. If you can not sleep after trying for 30 minutes, then get up and do a calm, peaceful activity before returning to bed when you become sleepy.
• Consider a calming pre-sleep routine, utilise stress-relief methods, or go for a dip in the tub. You could even indulge in a hot decaffeinated beverage to unwind.
• Allow yourself time earlier in the day to focus on what is worrying you or causing you stress. Worrying and overthinking can interrupt sleep and keep you awake at night.
• Keep your bedroom at a suitable temperature and ensure it is quiet and dark. Essential oils such as lavender can also help.
• Avoid doing other things in bed, such as watching television or listening to music. This can help your brain associate your bed with sleeping.
• Keep a routine sleep pattern by going to sleep and waking up at the same time each day. This can help form a routine so your body knows when to sleep.
• Try to reduce or stop napping during the day. This will also help your body fall asleep and stay asleep longer at night.
• Get regular exercise and natural light during the day to improve your sleep at night.
   

• Try to attend school as regularly as possible; it can take time to catch up once you fall behind.
• Maintaining friendships is incredibly important for your personal growth. Find things you can do together, including less moving around or going to their house instead of going out.
• Have a member of staff that you can confide in if you have any problems.
• Ask your school to provide work for the days you cannot attend, preventing you from falling behind.
• Ask for extra time to complete exams or assignments.
• Bullying is unacceptable. If someone is teasing, gossiping, or purposely bumping into you, it's important to let someone know.
• Let your school know of any assistive equipment you may need to help you access school.
• Ask your parents to talk to your school about your condition and help your school understand how it impacts you daily. Consider asking your school to complete an IHP (Independent Healthcare Plan) to help identify strategies for when you are struggling and what your school/teachers can do to support you to achieve the best in school.

• Join a support group: When you are with other young people with CRPS syndrome or chronic pain, they understand what you're going through. They can share tips and strategies or answer any questions you may have. Sharing your experience with others who understand can help you feel less alone and isolated.
• Counselling: Feeling sad, angry, anxious or frustrated by your condition is to be expected. Talking therapies such as counselling can help you manage the many emotions you are experiencing and learn ways to process these emotions. Counsellors are also skilled in relaxation techniques and breathing exercises which can help to keep your body calm which in turn helps to lower your pain levels.
• Burning Nights has a free online counselling service for adults and children. Click here to learn more and add your name to the waiting list.