Written by Christina Price, PT for the RSDSA blog.
I am a physical therapist, working on 28 years of practice in Colorado. My first memory of seeing a patient well past the first stages of CRPS was about 24 years ago. She was a middle-aged woman who had injured her foot and ankle, presenting post operatively for physical therapy. She refused to look at her foot, and certainly was not going to touch or massage the area. She clung to her crutches as she handed over the orders for full weight bearing, mobility and strengthening, but refused to even place her foot on the floor. She had presented with a bare foot, the skin was shiny and she was severely hypersensitive to touch all the way up to the knee. Her toes were swollen and white and she could not move them more than a few millimeters with great effort and pain. This was my first inkling that we were in for a long haul together.
Since that time, there have been many such patients, in different stages of the process, but none have pulled at my heart the way the teens and pre-teens have. After the crying, the screaming, the compromising and the eventual mutual understanding of what needed to be done, the vast majority of them go on to lead normal lives. Family support (but not family presence during treatment), counseling for the patient and their family members by a family counselor familiar with this issue, and physicians who also understand the needs of these patients makes the PT’s job a little easier. There are no short cuts, and no fancy techniques or equipment to get you over the really difficult hurdles. Building mutual trust is paramount. The patient and their family members have to trust in what you are doing.
We have found that diversionary techniques work extremely well to redirect the brain and nervous system during desensitization and movement work. We have our patients count backwards by 3’s, list the states alphabetically, recite recipes, or read out loud from a book of jokes. It is important to set goals, always monitoring how long they tolerated something, or how many reps they did, and challenging them to continuously move forward. They have to beat their times or their prior number of reps, or they complete another full set of exercises to make up for it when they do not. We always set the goal with the patient, allowing room for compromise (and allowing the patient a sense of having some control) while still moving forward. Follow through at home is vital, and, without it there is little hope for moving back toward full functional return.
Being the person these patients dread seeing can be draining unless you maintain your perspective and can show yourself and your patient that it is because of their dedication to the program that they are indeed moving forward. We do not ask about pain numbers on a pain scale. Their numbers are not on the pain scale. The focus needs to be on functionality. The pain will come down once the body part is a functional part of the body again, and not before. The PT who can see past the pain and who can lead the patient through a program focused on functional return, is an integral part of the treatment process for these patients.