Tips on Coping with CRPS

CRPS can be especially scary for young people. Not only are you feeling a lot of pain, but you are also facing unique challenges that adults do not.

• You miss some school and have to catch up.
• You may struggle participating in hobbies you enjoy or after-school clubs.
• You may find people at school don't understand, they may make comments or say youre making it up.
• You have all these doctors and hospital appointments and what they tell you may be difficult to understand.
• You might start to feel lonely because you're not able to see your friends as much.
• You might start worry about the future and how youre going to manage at college/university or in a job.
• You feel like you have no one that understands what you are going through or the pain you are in.

Flare Box
Have a box next to your bed or somewhere easily accessible for flare ups. Fill this box with all the things that help you get through a flare up, whether that be an ipad, music, hot water bottles or chocolate, everyones box will look different its about what works for you,

Warmth
Many people with CRPS report getting relief from heat, whether that be a hot water bottle, a heat pad or heated blanket. especially during the winter months, but make sure you use these safely and dont apply extreme heat directly on your skin.

Pacing
Pacing is a self-management strategy for activity. Patients who pace well are active when able, and rest when tired. You may plan extra rest ahead of strenuous activities or busy days. Break down the activities you need to do into smaller manageable chunks, it's very rare an entire task has to be fulfilled all at once.

• 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 chore per day.

Talking
Seeing you in pain everyday can be really difficult for you loved ones, family members can often feel helpless and frustrated that they can't take your pain away. Try to keep talking with you family, tell them what they can do to help you, let them know when you are struggling. This can not only offer you support but can also help them to feel like they are supporting you. 

Routine
Many people with CRPS have gone from engaging in daily routines to no longer being able to due to the non-stop pain they were experiencing. However, routines often provide an anchor to build all your daily activities from. Having a routine can ensure you continue to do the important things for your own physical and mental wellbeing such as self care, socialising with friends and family hobbies.

Sleep
Sleep is an essential part of life and contributes to us feeling well both physically and mentally. Having a poor quality sleep can increase your pain levels and you can get stuck in a vicious cycle of poor sleep, higher pain, poor sleep. Here are some tips for getting a better nights sleep.

• Don't force yourself to sleep, this will only make your body more alert. If you can not sleep after trying for 30 minutes get up and do a calm, peaceful activity and return to bed when you become sleepy.
• Try a relaxing bedtime routine, try relaxation techniques, a soak in the bath or a warm caffeine free drink to help your body relax.
• Try to allow time earlier in the day to focus on what is worrying you or causing you stress. Worrying and overthinking can really interrupt sleep and keep you awake at night.
• Try to keep your bedroom at a good temperature and make sure its calm, quiet and dark, essential oils such as lvendar can also help with this.
• Try to avoid doing other things in bed such as watching television, listening to music, this can help your brain associate your bed with sleeping.
• Go to bed at the same time everyday and try to get up at the same time everday, this can help form a routine so your body knows when to sleep.
• Try to reduce or stop daytime napping, this can help your body to fall asleep and stay asleep for longer at night.
• Make sure you are getting regular exercise and regular exposure to natural light during the day, light exposure and exercise can help promote a better nights sleep.

• Try to attend school as regularly as you can, once you fall behind it can be really difficult to catch up.
• Maintaing frienships is incredibly important, find things that you can still do together whether that is activities that involve less moving around or going to their house instead of going out.
• Have a member of staff that you can talk to or go to if you are having any problems.
• Ask your school to provide work for the days you really can't attend, this can help you to not fall behind.
• Ask for extra time to complete exams, or assignments.
• Bullying is not okay, if someone or a group of people are making fun of you, spreading rumours about you, intentially knocking into you, you need to tell someone.
• Let your school know of any assistive equipment you need to help you access school.
• Ask your parents to talk to your school about your condition, help your school to understand your condition and how it impacts you on a daily basis. Consider asking your school to complete an IHP (Independant Healthcare Plan) which can help to identify strategies for when you are struggling and things 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 who have CRPS or chronic pain, they understand what you're going through. They may be able to share tips and strategies or answer any questions you may have. Sharing your experience with others who understand can often help you feel less alone and isolated.
• Counselling. feeling sad, angry, anxious or frustrated by your condition is normal. talking therapies such as counselling can really help you to manage the many emotions you are experiencing as well as learning ways to process these emotions. Many 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, to find out more and add your name to the waiting list click here.