Here’s some info on how to help your child deal with CRPS while at school. Thanks crpsnetworkaustralia for the tips!
Complex Regional Pain Syndrome (CRPS) is a debilitating condition that is characterised by severe continuous pain, that may be burning, throbbing, stabbing, aching or feel like pins and needles and is considered the highest rated medical pain on the McGill University Pain Index. It rates above the pain felt in labour, cancer pain and above the pain of a traumatic amputation.
Although you may not see any signs of the pain it is very real. One of the most challenging symptoms of this condition is ‘allodynia’- a painful response to non-painful stimuli. The lightest of touches on the area of pain can be excruciating, as can light breezes, wind, sound, water, clothes, air-conditioning, even sunlight.
CRPS is usually precipitated by a trauma, such as an accident, a sprain, fracture or a surgery, but CRPS can also occur after a very trivial incident or immobilisation and, on occasion, can develop spontaneously.
The exact cause of CRPS is unknown, however it is believed that CRPS occurs as a result of damage to, or a malfunction of the nervous system and the immune system at the site of the injury.
Symptoms can include:
• Abnormal Skin Color
• Abnormal Swelling
• Abnormal Hair or Nail Growth
• Allodynia —a painful response to non-painful stimuli
• Decreased Limb Function
• Depression and Anxiety
• Dystonia and Movement Disorders
• Hyperesthesia —increased sensitivity to normal stimuli
• Joint Stiffness
• Lack Of Concentration
• Memory Loss
• Muscle Weakness
• Severe Pain
Students with CRPS may:
• Need extra time to get between classes
• Need permission to move to classes early to avoid being bumped by other students
• Need to use heat pads
• Need time out in the nurse’s office during pain flares
• Need protection from crowded situations to avoid being accidentally bumped
• Require help carrying their books
• Require special seating arrangements to decrease pain
• Require extra time for homework assignments and tests due to effects of CRPS on the limbic system in the brain plus the easy fatiguability of CRPS
• Miss time at school due to appointments
• Have trouble concentrating in class and suffer from memory loss
• Be tired in class due to sleeping problems
• Be at risk of bullying
• Develop depression, anxiety or post-traumatic stress disorder
Students with CRPS may be capable of a physical activity on one day and may not be able to repeat this the next. This is normal with CRPS and should not be considered as malingering. i.e. children can be in and out of a wheelchair throughout their CRPS journey or be capable of walking 5 metres 1 day and is too sore to achieve it the next, or can write one day and the hand be too sore to hold a pen the next etc.
Physical symptoms can wax and wane and doing too much can be as detrimental as not doing enough for children recovering from CRPS. It is important that they learn to pace themselves and they work carefully with their physiotherapist to achieve a good balance.
What should Schools and Teachers Do?
Parents should be encouraged to get an Action Plan from their GP or Specialist outlining the child’s capabilities and what special considerations may be needed for their child to continue their education at school.
•I.E. avoid crowds due to allodynia
•Have time out as needed due to pain flares or fatigue
•Take medications as required
•Space away from wind or cold is required during lunch
Schools should discuss this with the parents and put in place an Individual Support Plan for the student.
You should be aware that the student may miss time due to multi-disciplinary health care appointments as these are scheduled frequently for this disorder. The student may also miss school due to extreme pain or emotional distress.
Never touch the student without asking for permission. Even the lightest of touches can cause extreme physical pain. Students with CRPS are also sensitive to loud noises, so be aware that the intercom, large crowds, and assemblies may even cause pain for students with CRPS. They may also be sensitive to changes in the weather, rain and heat and cold.
You should encourage the student to stay as involved as possible in school and extracurricular activities, especially in areas that they enjoy or are passionate about.