Using principles from a trauma treatment method, called Somatic Experiencing, and a new, gentle Physical Therapy method called Sensory-Motor Manual Therapy you can make gains in recovering from RSD/ CRPS pain. Some clients have a full recovery. Some clients have significant but not a full recovery with these methods.
RSD/CRPS stands for Reflex Sympathetic Dystrophy and the newer term is Complex Regional Pain Syndrome. This condition is characterized by a range of pain that at it’s worst can be utterly severe, constant, and debilitating. The pain may be characterized by burning, pressure, sense of a limb being absent but at the same time in severe pain. Typically a person with RSD/CRPS cannot stand for someone to touch the affected area.
Every case is different and must be addressed in it’s own unique way. However, that being said, there are often issues that are common to this condition. One of the common problems is moderate to extreme changes in sensory perception. Also there are changes in muscle control.
A unifying principle in RSD/CRPS is extreme disconnection from the body part(s) affected. This is what drives the amazing range of sensory distortions that are part of this condition. For example it’s not uncommon for someone to feel like they have only 2 or 3 toes or fingers. Body parts may be experienced as being an abnormal size, and like wood. Movement if present may be accompanied by the sensation of not moving and/or inaccuracy in position sense.
In traumatic stress language this is called dissociation. In the field of psychology, the term dissociation tends to refer to a person’s identity or sense of self. A person can become numbed out, have reduced sensations, and disconnect from their relationships. RSD/CRPS is in many ways bodily dissociation of an extreme nature.
Another term for dissociation is a freeze response. We tend to think of a freeze response as a whole body reaction like the deer in the headlights that gets stuck in place. Another example is a turtle burying itself in it’s shell. Imagine though, being a turtle with only one arm or leg stuck in the shell and no way to communicate to the limb to get it back into normal function.
Here’s an example of this situation. I once had a client come to me who had RSD/CRPS in her right arm. She went into a 40 degree below zero freezer at work in everyday clothes and the door stuck and wouldn’t open. With no way to call for help she had to save herself. Recognizing that she’d be dead if she didn’t get out fast she pounded on the door with her right hand until she got free. She didn’t give up and succumb to the inevitable.
She mobilized enormous amounts of energy, like a mom lifting a car off a child, into her arm. That’s a protective reaction in our powerful instinctive arsenal. It’s called a fight response. She fought her way out.
But, the right arm became sacrificial, it was expendable. Her arm became disconnected/dissociated so she could pound away at the door with it. The arm went into a freeze response which is also another powerful part of our instincts that enable us to survive overwhelming situations. Imagine trying to pound a door down with a noodle arm. That wouldn’t work. The arm needed to become somewhat more rigid which involved the muscles tightening on both the bending and straightening sides of all the joints.
In this person’s case, she survived but was left with an arm that was “stuck in the turtle’s shell”. Looking at traumatic stress through the concepts of Somatic Experiencing, we see instinctive protection strategies at work. Treatment includes addressing being stuck in a powerful biologic survival process. It wouldn’t be very smart of our protective systems to give us survival strategies that put us “in the turtle shell” but never gave us an impulse or ability to get back out again.
The built in method for getting back out of a freeze response is another instinctive process we’re capable of, which is called discharging. Normally after an overwhelming threat or experience we will release energy in a variety of ways and go back to normal. A turtle in it’s shell will use it’s senses to determine the coast is clear, it will let go of the retracting pull of it’s muscles and go back to moving about.
Another example we all recognize is the story of the possum who “plays dead” (think freeze). If coyote leaves and possum doesn’t quit playing dead, it will be dead. So possum needs to get itself back to normal. On one hand this seems so natural it isn’t worth thinking about, but for someone with RSD/CRPS these processes are critical to understand and utilize in treatment.
In people, we sometimes don’t go through this discharge process thoroughly, or completely, or at all and can get very stuck in a bad moment in time. This can often be part of the RSD/CRPS problem. Also, some people with RSD/CRPS have had multiple situations earlier in life, that were very overwhelming. This can sensitize someone even more to go into a pattern of freezing. This isn’t true for everyone, but it can be an additional layer of complexity.
Using Sensory-Motor Manual Therapy(SMMT) and Somatic Experiencing(SE) methods, a sense of safe space around a person’s boundary, and eventually into the affected part becomes part of treatment. Words alone aren’t enough. A person needs to restore their ability to sense their environment outside their self and inside their self. They need to be able to feel what is okay, and gradually expand on that to regain access to their built in capacity to discharge any residuals from the bad situation in time that started the RSD/CRPS.
Sensory-Motor Manual Therapy and Somatic Experiencing treatment help shift a person back to normal sensation and normal muscle control using brain body connections in a tolerable, gradual way. This is very complimentary to the two other emerging treatments which are described below. And by the way, I’ll say right here that with RSD/CRPS, I do not start touching patients near or in their pain area!
Two other emerging treatment methods focus on brain body connections. They are more exercise focused and do not incorporate traumatic stress concepts into the programs.
Mirror visual feedback technique (MVF) can be used with RSD/CRPS that is in an arm or leg. A mirror is positioned in such a way that looking into the mirror, you will see the normal limb but it will look to you like you are seeing the painful limb. Movement of the normal side are combined with efforts to move the painful limb. Your brain will register what you see as motion in the side that doesn’t tolerate movement or contact. Another part of mirror therapy incorporates looking at images of an arm or leg in various positions and efforts are made to recognize and mirror the picture.
Mirror therapy is credited with having been initially begun by Dr. V.S. Ramachandran, MD, PhD in 1995, at the University of California in San Diego’s department of psychology.
Another method of treatment involves more direct engagement of the painful limb. Stress Loading was developed by Lois Carlson, Occupational Therapist and H. Watson, MD, and published in 1987. It involves engaging in back and forth scrubbing motion while bearing weight on the limb and secondly carrying weight. This method can clearly help restore use of the limb and decrease pain significantly.
If that sounds painful to you, you are right. Scrub and carry treatment is acknowledged to increase pain initially before it begins to be helpful. Modifications may need to be made for a stiff wrist so that a brush can be held. A person needs to get through an initial increase in swelling and pain. Some people are in such bad shape that they just cannot handle adding pain to their situation even though this treatment has shown positive responses.
The mechanism that enables a scrub/ carry program to help is twofold. Both activities add increasing doses of sensory signals from the disconnected body part back and forth to the brain. Additionally, the scrub activity engages the limb in back and forth motions that help counter the clenching action in the limb.
In some ways the scrubbing is a rudimentary and voluntarily driven mimic of some types of instinctive and involuntarily regulated discharge patterns. When the natural healing properties within the body can be moved through, and engaged, the healing will be more complete. The combination of these methods can help patients who have failed to respond to one alone.
What can we do to help patients that are not yet able to progress treatment with mirror therapy exercises, or the scrub and carry method? Also, RSD/ CRPS sometimes involves the abdomen or the back. Neither of these areas is going to work with mirror therapy or scrub and carry.
Sensory-Motor Manual Therapy also adds in a progressive set of sensory signals. One difference between SMMT and mirror and scrub/carry methods is a whole body approach versus focus primarily on the painful limb. Initially attention is paid to many areas including, thinking patterns, protective reactions to the boundary space around ones self, and re-establishment of clearer sensory processing in the client’s best places before venturing closer to the painful areas.
Sensory-Motor Manual Therapy can be a part of treatment before other methods are tolerated, and can help support the entire process.
All these methods make use of sensation and movement connections in the brain in the pre-motor and motor cortex. Additionally, Somatic Experiencing methods address the threat centers in the deep and instinctive nuclei in the brain. Reacting to threats is linked to the muscle system. Otherwise, we’d just be plants.
We often learn movement by watching movement. There is a whole new class of brain cells that’s being discovered and researched that happen to also be called Mirror Neurons.
These specialized nerve cells enable us to have a personal experience of 3 types of information which are emotion, thought, and movements. We can internally understand the emotions of others. Our empathy in part, comes from our internal signaling and body experience of seeing what others show in their emotional expression. When we see someone smile, our face muscles subtly mirror the smile we see, and we interpret that subtle data as smile/happiness. That’s part of how a mood is contagious. The second type of mirroring is in understanding the thoughts and intentions of others.
The third kind of mirror neuron cells that most concerns us here, is understanding and experiencing movement. When we learn how to do a motion we are often taught by someone who demonstrates it first. When we watch a motion, we subtly make the motion in our muscles and learn by an inside sense of doing even though on the outside we may not be making an observable motion.
This effect is even more powerful if the observed movement is purposeful, and or involves hand to mouth motions. Imagine someone eating an ice cream cone, and you will feel yourself doing it too. This is part of the way that mirror therapy helps the painful limb get going again.
The problem with RSD/CRPS is sometimes the condition has disrupted normal signaling to such a degree, that a person doesn’t have the ability to feel or re-connect the sensations signaled via mirror therapy. So little is registering in the brain from the images, that little progress occurs.
In the situation of newly developing RSD/CRPS which in the general scheme of this condition could be classified as mild, treatment might look like this:
Say for example a person has had a fracture and part of the arm is immobilized with or without surgery. The hand is painful to move and so the person avoids moving it. Weeks go by and the time to begin activity comes. Now the hand and limb are showing signs of RSD/CRPS with swelling, sensation changes, heightened reactivity to any painful stimulus like the necessary stretching that comes with starting Physical Therapy.
Typically the advice is to just get going and make the hand function. Often the thinking is that if the tissues don’t get moving, scar tissue will build up and permanently limit motion and use. In a hyper protective situation like this, there is developing scar tissue that is also being guarded by the muscle system. I think of the muscles as the police. The police say you’re not going to stretch or move and it becomes a battle to get the muscles out of guarding.
I advise establishing recognition of where the transition between “feels normal” and “doesn’t feel right” is at. Then with Sensory-Motor Manual Therapy, sensory signals are specifically added in from the normal area towards the abnormal areas in a gentle respectful approach and retreat pattern. Attention is paid to calming in the person’s whole nervous system as well as the affected area. Touch needs to be progressive and delivered in a completely tolerable way so the touch doesn’t become a further trigger for pain, withdrawl and dissociation.
With Sensory-Motor Manual Therapy, the police action of the muscles is gradually quieted down. Sensation can be explored more from a brain state of curiosity than fear, distress, and pain. This further helps ramp down the hyperactivity of the nervous system and the alarm bells going off in the deep brain centers.
Once the person and their limb is shifted into a calmer state, any use of mirror therapy, or scrub/carry becomes even more effective.
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