Support for People with CRPS

By Phyliss Shanken, MA

I wrote an article about my personal experience with CRPS that appeared in ADVANCE for Physical Therapists and for Occupational Therapists in 1993. In response to that article, I received phone calls from CRPS sufferers who wanted to talk, who felt isolated and confused about this disease.

I have spent hours on the phone listening, supporting, and giving guidance on ways to deal with CRPS. As a result, I have been sharing my ideas on how to cope with chronic and acute physical and emotional pain.

If those who responded to my last article are representative of CRPS sufferers in general, then we can assume that you had symptoms of CRPS well before you were diagnosed. You probably saw an orthopedic surgeon, a family doctor, a rheumatologist, or a neurologist, and not necessarily in that order. And at first when you eventually learned of the diagnosis, you were probably relieved because finally there was a name for your suffering. Then you assumed that the crazy feeling you had begun to experience, as well as the doubting looks you had been getting from loved ones, could finally be put aside.

You felt dependent on people who didn’t seem to know all that much. You craved information, and hung onto your doctor’s, physical or occupational therapist’s, every word. Yet you didn’t want to hear what you feared was the truth. Maybe you finally found an CRPS specialist who told you to learn to live with it. Somehow, you had not developed the skills you needed to “live with it.” You were overwhelmed. You felt immobilized because this problem erupted without warning: You are innocently living your life and then, Boom! Out of control.

This is the first phase of the predictable life stages that occur with any crisis or change, according to Roger Gould, MD, who wrote Transformations [New York: Simon & Schuster, 1979]. He calls this phase immobilization: Internally, you were stamping your feet, saying, “I don’t want to have to handle this. It’s not fair.”

The next stage is minimization: “Now I have a name for it, so I’ll be okay.” We need this stage so that we can build a “cocoon” around us to help us build up our resources for the long road ahead.

As you moved out of the denial phase, you may have experienced depression, which is based on the reality that you have no way out of this, and coping with it is just asking too much. You feel “down” and unable to move on.

Then you shifted into the frustration phase, acknowledging that you have CRPS and don’t have the ability to change it. There’s an old Chinese proverb: “When you have a disease, do not try to cure it. Find your center and allow for healing.” Or, as Bill Moyers says, “Healing is possible even when cure is not.” When you face the emotional pain of being told you have CRPS and the physical pain of this disease that makes you feel so out of control, try to allow for healing without trying too hard to control that which is uncontrollable.

When you get into the center of pain, when you relax and allow the sensations to take you over, it doesn’t hurt so much. Pain is actually resistance. Bracing yourself merely magnifies the pain. Therefore, try to investigate the pain rather than attempting to eliminate it. Is the pain sharp or dull? Cold or hot? Suppose you could draw the pain? What colors would you use?

Flow with your feelings. Here are some guidelines:

Position yourself to embrace the disease. Even though it may not be true, assume that you will have CRPS for the rest of your life. This resignation may work to prevent you from having to fight so hard against the realities of physical and emotional pain. When you let go and stop fighting, often pain subsides, and CRPS feeds on pain. Isn’t it ironic? It is by assuming that you won’t get better, that you have the best chance to get better. Work through all the aspects of CRPS so that you redefine yourself. “I am a person who lives with certain kinds of sensations, whereas other people don’t have them. I’ll have good days and bad days, but I’ll handle it. I will try to make myself as comfortable as possible and seek out ingenious ways to survive. I will be proud of these creative solutions to a heretofore uncontrollable situation as I define and take charge of the areas where I do have control.”

Some of the solutions might be ways to use pillows to prop your affected limbs, ways to use the TENS unit so it’s not too conspicuous, wearing gloves or using heating pads- whatever works.

Give up what you can’t control. The diagnosis is here, the swelling is visible and not matter how hard you stare at it, and it won’t go away, so perhaps you ought to stop focusing on it. In fact, your morbid fascination with how your affected area looks might cause more trouble.

As much as possible, forget you have this disease in the sense that you need to make your response to CRPS a way of life. Try not to think of yourself as an invalid. Share with people who love you so that you can be nurtured, but try not to milk it too much.

When I say try not to focus on the pain and forget you have this disease, I recognize the contradiction. This means accepting the reality of your disease, then working on letting go of all the resistance, protest and hysteria that impedes your ability to submit to, yet take charge of this crisis in your life. You can’t let go of the feelings until you allow yourself to feel them. Much of what I have said fits into the final stages of Dr. Gould’s sequences of change. Eventually, you get to acceptance of reality. You can now say, “I have CRPS.” Then you ask, “Now, how am I going to live with this disease?”

This is the testing phase. “I wonder what it will be like now that I have to use a cane to walk?”

The next phase is searching for meaning. “Now that I have accepted that I have CRPS and I’m learning ways to deal with it I want to see how to make sense out of why this happened to me and how it will affect my view of myself. Maybe I’ll write a book about it to help other people. Maybe I’ll start a support group. Other people have handled this; I guess I can, too. I will have a unique way of handling it.”

The last phase is internalization, when you incorporate the change into your behavior and your perception of the world, the point where you have worked through the conflict. You no longer have to concentrate, test, question or marvel over your condition. Instead of feeling defective because of CRPS, you can now say, “I need special aids to make myself comfortable. I am unique in that way.”

Please consider psychotherapy–it can help in terms of adjusting to the stress of this disease, learning why you might have resistance to coping with pain, and other problems that may erupt in your life as a result of the isolation and rejection by others.

You may have had some problems before the CRPS that are now coming to the fore. Your personality may be the type that inhibits healing. Perhaps you haven’t been tested like this before. Your coping mechanisms aren’t working the way they used to. Look for other areas in your life where you have difficulty giving up control.

It’s okay to be angry, but then you need to move on and take joy in the way you’ve adjusted to the situation. If you remain stuck in the angry, frustrated, self-pity place, then you should consider psychotherapy.

In general, those who can accept the fact that all is not lost if things don’t go their way are most likely to reach the internalization stage. By understanding the process you go through when faced with any crisis, you can say, “I’m depressed right now. This is where I need to be at the moment so I can work through all the feelings I am to experience and eventually I can go back to living a normal life.” The more you allow yourself to flow with the inevitable emotions involved in change, the more your self-assurance emerges and the greater your ability to confront unavoidable stresses of life, including CRPS.

Phyliss Shanken is a licensed psychologist in Pennsylvania and Director of Psychological Services of INTROSPECT in Montgomery County in Colmar, Pennsylvania, a psychological/psychiatric practice facility. She also maintains a private psychotherapy practice. For more information about Phyliss Shanken,click here.