The role of the physical therapist in treating Complex Regional Pain Syndrome (CRPS) or Reflex Sympathetic Dystrophy Syndrome (RSDS)
By Christina Price, PT: http://bodyimagephysicaltherapy.com/physical-therapy-fitness-leadership
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.
I dropped in the middle of my living room floor. Instantly, thriving in pain. crying for an ambulance. There was nothing dramatic going on at the moment. I had some trauma weeks before with a broken/cracked leg. I was not in any pain prior to this.
This was the beginning which until now was a living hell. I learned how to live, to the extent I am alive through ingenuity and perseverance. Today I am told I was fighting a false demon.
The worst suffering I have had has known has been the social persecution. The pain of being caught between the argument that RSD is something that can be cured like the recover from a broken arm or other illness. A recovery scheme that leaves you trapped in a no win rationalization that says if you do not recover it is because you do not will too recover. The Disease doesn’t ever win and you lose. The treatment machine WINS. You are deprived of the the thing that you most want – recognition of your suffering and disease. In the end, you are a BUM or for the more compassionate, one of natures unfortunate week lings. Mostly it evolves into a lack of character on your part. No doctor loses, the medical establishment doesn’t loose. You are challenged with acquiring the will to stop behaving like you are dysfunctional. Brilliant!!! You may commit suicide.
The Anti-RSD forces for decades have been honing and sharpening this rational. They have been dedicated to squashing the very ideal of it. While those weak loser patients go on dying of heart attacks and committing suicide.
It isn’t as though there were many mean spirited individuals out there wanting to see us suffer. They are just ignorant of all the information. The information they lack exists in the form of feelings and you can not transfer feelings easily unless you are a poet and then not even very well.
It’s like Republican arguing with a Democrate. The arguments just get more complex and nuanced with time but there is no resolution. I doubt there ever will be. I think the best we may hope for is a bill of rights protecting each as they demand.
You can’t explain the color red to someone born blind.