Phyliss Shanken, M.A.**

Psychologist

Portions of this paper were published in two journals, each journal having edited the paper differently:

Advance For Physical Therapists, Volume 4, No. 39,
September 27, 1993

Advance for Occupational Therapists, Volume 9, No. 40,
October 4, 1993

ABSTRACT

A psychologist who developed RSD after a minor fall, explores the course of the disease, the medical inconsistency of treatment, and the role of the physical therapist. Descriptions are made of the emotional considerations in the experience of pain, loss, disbelief, guilt, anger, and the psychological symptoms of anxiety and depression, as well as the factors involved in the subsequent working through of the crisis through internalization of the physical and emotional realities. Recommendations are made for the health care professional to facilitate the patient's physical and psychological progress.

Reflex Sympathetic Dystrophy: A Personal Perspective by a Psychologist

I know I'm not a crazy person. I'm a mentally fit person, quite capable of handling crises and of helping others to do the same. So how is it that from a minor fall which caused virtually no immediate problem, I developed a physical disease that some people attribute to malingerers, to dependent people, to "screwed up" people?

Mine is a story of inconsistency of medical treatment, of trust and betrayal, of pain and pain management, of groups that profess to be supportive. This is a story of dependency and self-control, of the use of ingenuity in medical treatment, of how listening can help. This is a story of my questioning myself, my reality, my neediness, my wish to just give up and become an invalid, and of course, the ultimate guilt that accompanies those feelings. This is my story of how I learned about RSD and the psychological aspects of the disease.
I feel that the major difference between me and other RSD sufferers may be that I am in touch with my feelings; I can readily label these feelings and take responsibility for them. I present my story for you to draw your own conclusions and generalizations about the psychology of RSD. It is for you to fit the concepts that are intertwined in my story into your work with RSD patients. I am attempting here to vivify the experience for you rather than to merely present you with a list of symptoms. I am deliberately avoiding the use of technical and medical terminology. Instead, I present you with a graphic depiction from a patient's point of view.

First, a little background about me and my supersensitive neurological system. I am the kind of person who is sensitive to all medications. Even an aspirin can give me a high. I have many food allergies and I have sensitivities to certain fabrics against my skin. I recently learned that I may possibly have a heretofore undiagnosed learning disability where I have trouble screening out stimuli that most people can blot out. For example, I am unable to read when there is background music. I have always been sensitive to tags on clothing whereas others probably feel the tags, but don't pay attention to them. When I get a muscle ache in one part of my body, my whole body seems to react with alarm in that I feel exhausted, arthritic, and sick, as if I'm allergic to that pain in the place where the pain originated. When I cut myself, even if it doesn't hurt, I experience a chill that goes from the wound, throughout my body, into my neck and head. In addition, I'm also super sensitive to my feelings. My emotional reactions are often played out through my body. For example, when someone tells me something nostalgic, invariably, I get "goose bumps." Whether happy, sad, or angry, I find my eyes watering. This sensitivity to myself and to others has helped me in my life as a poet and writer as well as in my work as a psychologist. I introduce this profile to you now to suggest that perhaps I'm the kind of person who is vulnerable to a condition such as RSD.

In August of 1991, my husband and I were taking a pleasant hike in the rain forest of Puerto Rico. It rained while we walked, but the rain was warm and embracing as it cooled us from the devastating hot summer air. Suddenly, my feet slipped out from their rightful position and I found myself on the ground in a sitting position with my left arm behind me as it supported me. I heard a crack in my shoulder. I was shaking from the shock of the fall. I was slightly sore in my wrist and three of my fingers. Smiling, I declared to my husband: "How lucky that I didn't break anything. Imagine our spending our vacation in an emergency room!" As I later learned, my sneakers were badly constructed and extremely slippery when wet. It took a long time to return to the car because the path remained almost impossible for me to pass. I walked sideways in order to proceed without falling again. Needless to say, even though other people were sliding a bit, no one had the difficulty I had and I was embarrassed. I was probably in a state of alarm.

There was a week left of vacation and it was fun, but uneventful in terms of catastrophes. About ten days after the accident, when performing certain tasks such as peeling potatoes, I experienced a sharp pain in my wrist. I paid little attention to this. Since I'm usually the last person to go to a doctor, it was out of character for me to consult one. The only reason I did was that a few years ago, my husband had a problem with his thumb and delayed consultation with a doctor who later scolded him for waiting and thereby causing more damage. Remembering that, I thought I might as well check out my "minor" problem.

I went to an orthopedic surgeon in Philadelphia, who upon reading the X-ray, showed me the fluid that was causing swelling that I had not observed by merely looking a my wrist. He said that he couldn't tell whether or not there had been a hairline fracture, but he would treat it as if there were in order to be on the safe side. He prescribed a soft cast.

It was then that all my troubles virtually began. I have since learned that when pain increases after immobilization, this may be diagnostic of RSD. For me, it was the beginning of intense pain and sleepless nights which escalated during the six weeks that I was in the cast. I am not a complainer, but I did call the doctor once and he reminded me that at my second visit, he had forewarned me that I'd have pain that is not commensurate with the injury. "Continue the warm soaks," was his advice.

By my last visit to him, I was in agony. I fully expected him to say that I'd need a hard cast or surgery. I remember my dismay as he said, "Okay, you don't need to wear the gauntlet anymore." I said, "But I'm still in pain." He said, "Yes, and you probably will continue to have pain for a long time, more likely for months rather than weeks." I was sent on my way. I did feel somewhat validated because before that assertion by him, I had begun to feel like a hypochondriac. Who gets a hairline fracture and can't sleep because she's in pain? This was crazy. Am I "milking" this? Can't I take a little pain? What is the matter with me?

I will do my best to describe the pain in retrospect. There was an overall, continuous feeling of heightened sensitivity as if I'd been burned, on the outside. Simultaneously, I felt pressure from the inside that was greater or worse at different times. I would hear myself saying, "Oh no, there it is again! And I could not ascertain how long this pressure would last. It came in waves. I likened it to a feeling of an inner arm or hand, covered by burnt skin. And this inner bone structure would roll around in revolutions like a barrel where the friction would further burn, kind of like a rope burn, from the inside out. Sometimes, I'd feel intense stinging in a finger joint or section of the arm, wrist, or digits. My reddened hand felt sweaty most of the time, but I didn't pay much attention to that. I could not wear a watch without exacerbating the pain which accompanied a tightening sensation. Even the sleeves of my blouse might be irritating. Later, the elbow joint and shoulder presented new scenarios to challenge my coping ability. Then there were general muscle aches and stabbing sensations and jolts and pulsating sensations that seemed to come out of nowhere. "Now what's that?. . Is this a new thing that will plague me?" I believe that the uncertainty and lack of control of these random sensations caused me to brace myself and that probably contributed to furthering the pain. When I realized this, I worked on it and tried to do what I help others to do in pain management. Since pain is actually resistance, by going along with the experience, by taking stock of it from a distance, some relief can be found: Try to describe it --does it pulsate? Is it sharp or dull, hot or cold, and the like? I'd ask myself: If the pain were a picture, what would it look like? Although with the more continuous pain, this process was easier, I tried to extend this method to these maverick "attacks." I was unable to sleep soundly even though I set up pillows in all sorts of mountains and valleys in order to relieve discomfort. I'd be awakened with the realization that in my light sleep, I had been gritting my teeth. I'd sit up, holding my arm by the elbow, kind of caressing it. At one point, someone I knew suggested that I try Elavil to help me to achieve a more sound sleep. Since I'm supersensitive to medication, I took one half the minimum dose. After two days, I developed a drug-induced clinical depression, but I didn't realize it as such. I felt as if I didn't want to move and that there was a haze around me that no one could penetrate. Needless to say, I dropped the Elavil.

Having been discharged from the doctor's office after my six week stint in a soft cast, I was feeling isolated, abandoned, confused, and a little crazy. It was the end of October, 1991, a little over two months after my fall. The pain got progressively worse, but my hand and arm looked almost normal except for some swelling which appeared minimal. I described myself as having one "old" hand and one "young" hand because due to the swelling, the left hand appeared less wrinkled than the right one. And the "good news" was that the nails on my afflicted hand grew very long! I polished them often.

At Thanksgiving, we went on a family vacation and I took my heating pad and my bucket for soaking. By this time, I was unable to lift my arm. I learned later that I had a frozen shoulder. My husband at times had to help me maneuver my dinner because my fingers felt thick; they were hard to move and it hurt to use them. The swelling increased. My hand swelled to at least double. The orthopedic surgeon who was called prescribed ice and elevation and said that now he was convinced that I had Rheumatoid Arthritis and not causalgia as he had originally thought, and I should see a rheumatologist. On my return home, I saw the rheumatologist who said for sure I had RSD and that I should have a bone scan. He also prescribed physical therapy. He then referred me to his associate for what he said would be another opinion. That associate confirmed the diagnosis and told me that I could become extremely debilitated unless I had a ganglion nerve block as soon as possible. He didn't seem to know too much about the actual procedure and made it sound like a routine injection. The way he explained a nerve block was not at all the way I heard it described later by people who actually went through it. Since my husband is a physician, he immediately had issues with my having an invasive procedure. He called the doctor and asked him to recommend the best anesthesiologist who specialized in this procedure. Hours later, the rheumatologist called back and said that upon reading current literature, he thought we should try steroids instead. I was concerned about side effects, but the rheumatologist assured me I'd be off the medication in six weeks, before I'd gain weight. Due to my other medical problems, I checked with my ophthalmologist who said that four to six weeks would not be too long. My internist agreed that steroids would be less invasive and that we could always do the nerve blocks later.

The steroids worked to bring down the swelling and for a number of weeks, the pain lessened. However, I realized that based on the way the medicine was prescribed, I would be on it much longer than he had pledged and I had already gained ten pounds and was showing facial changes. Why had he told me six weeks, when it was already eight weeks with the ending not occurring for at least another four? I began to feel betrayed again. Somewhere in the middle of all this, I bumped into the first doctor who was aghast that I was being treated for RSD. He said: "You don't swell with RSD!" As the prednisone was reduced, the pain returned, but not the excessive swelling.

During all this time, I had been primarily a silent sufferer. In general, this way of coping has been my self-inflicted plight, partially due to the fact that although it probably was not true, our family had dubbed my mother a hypochondriac and my father always claimed that aches and pains were "all in your head." Therefore, it's in my nature to avoid complaining, to almost deny pain, to treat my own physical problems as psychological ones. When it came to the RSD, in no way did I want to burden my family or friends. My pain wasn't real anyway, right? Further reason to keep my mouth shut. But those who know me could tell. I was quiet, not my usual fun loving self who is always up for a good laugh. I'm a highly creative person, yet all creative activity ceased. I had too much else with which to contend. I wasn't writing articles; I wasn't espousing new theories and thoughts; I wasn't showing the compassion I have for life, and so on.

Physical therapy helped with the frozen shoulder, but my fingers were still thick, rigid, and sometimes useless. I was told to keep using my fingers and hand, but this was, of course, an ambivalent endeavor. I found physical therapy to be very painful and I was learning that pain begot pain when it comes to RSD. In the beginning, I had an aversion to being touched. It's difficult to describe. It wasn't just the fear of the therapist's causing me pain. There was another sensation. It was a heightened sense of danger as expressed through the skin, as if my hair on my skin "was standing on end." I guess you could liken it to the way some people feel who have trouble with the sound of chalk squeaking across a blackboard. This reaction can make one feel even more crazy. I for one, found this aversion to go so against my usual nature of wanting to be close to people whom I love or with whom I feel simpatico, that it hurt my view of myself. It made me wonder, "Is this still me?" Furthermore, I'm a "good" patient; it's easy for me to cooperate with a doctor, especially if he or she answers my questions. Here I was being touched, while at the same time, experiencing a knee jerk reaction of wanting to yell out, "Keep your's hands off me!" Upon the suggestion of one of the physical therapists, I was able to desensitize myself by massaging my hands and arm and rubbing various textures against my skin to eventually master this fear that was coming from somewhere other than my psyche.

At any rate, after about eight physical therapy visits, I decided to take over my own treatment. Because I am a resourceful person, and having felt betrayed, I had basically given up on traditional medical help. I felt pushed into creating my own devices for alleviating pain and stretching my physical functioning. I came up with warm soaks, wearing glove liners to keep down the exacerbation of the pain when I was cold, hand warmers that are used by skiers, heating pads placed in my two offices, my bedroom and family room, creative use of pillows combined with different elevations for my hand and/or arm. And when I felt ready to assert myself, I asked my husband to massage my arm which was very effective. Because of the shoulder and elbow impairment, I found one particularly helpful physical therapy device as well as a loosening up of my arm and fingers that helped me through some of the pain.

The idea came to me in the middle of the night during one of my many sleepless struggles. When I was in high school, I had been captain of the majorettes. Even though I hadn't twirled in years, I went into the attic and found my baton which by this time was 34 years old. I developed a set of twirling exercises for myself so that eventually I could work up to a whole routine. This was fun and not so monotonous as other physical exercises. It was creative. It made feel more in charge of my problem and its solution. I felt powerful and fully functional again. Even though this exercise meant that I had to endure even more pain, the pay off was wonderful.

I carried my baton and bucket for soaking and other paraphernalia around with me wherever I went and often had to explain myself to people. Sometimes, these explanations helped me in that I was calling attention to my problem and people asked me questions. Sometimes I enjoyed these questions. I felt less lonely to know that someone was there to listen. Sometimes, I was embarrassed and fidgety, feeling that it was not appropriate to discuss, nor should anyone really care.

I had the most difficulty discussing or calling attention to my problem when I was with my patients. They were curious. Sometimes, I sat in awkward, unusual positions whereas, I customarily exhibit an inner peace that comes through my relaxed, almost motionless, receptive posture. I was now restless. As much as I tried, sometimes I was unable to cover the fact that I was in pain and therefore, I'd think that I was showing a neutral expression, but betrayed myself with a grimace or a deep sigh. My patients sometimes asked about my pain, but I knew that certain patients who may have been afraid to ask, might interpret these gestures as my disapproval or distance from them. When I felt that this was happening, I would ask them if they noticed a difference in me. This was sound psychotherapeutic practice, but by inquiring, I was putting myself into the position of having to explain my behavior to them. You see, there was also an ambivalence about this. I sometimes was fighting with myself because I wanted their sympathy and understanding, but in my position as a therapist, I am trained to be there for the patient, and certainly not to use the patient as my confidante or nurturer. I was in a regressed place and had to do a lot of talking to myself to keep myself on track with my patients.

We all know that when you fight pain, the pain intensifies. So I had to learn to flow with it. The challenge was to continue to feel in charge and not to succumb to the powerlessness because the sense of powerlessness merely contributed to the pain and suffering. At the same time, I needed to be able to let go and allow the disease to take it's course. And the most important factor, was my constantly listening to myself for feelings and thoughts that would shed light on the intrapsychic factors that I felt contributed to either my pain or to the easing of the pain.

I remained doctorless. Then I discovered that there was an RSD support group in the area: After I attended, I confess that I don't know what the group was supposed to have done for me. I finally learned that I was not alone, that millions of people struggle with this not so visible problem. That was helpful. But I also learned that my condition could and probably would get worse, that I could become so debilitated that I'd be wheel chair bound; I might even die as the muscles, joints, and bones in my body were attacked. And even if I did improve, I'd have to be careful for the rest of my life that I didn't injure myself again, even have surgery, because the RSD could flare up again. I learned that, at all costs, I should never undergo the nerve block procedure because it is a frightening, painful and devastating experience, and to top it off, you need to go back at least five times! Even then, it might not work!: No way!

I came to the meeting feeling curious and hopeful. I left the meeting feeling highly anxious, hopeless and asking myself: "Will the worst happen to me?" And because of this urgency, I became much more aware of my physical pain. I knew that I'd never attend another meeting such as this. I also became a bit hysterical in that I came to fear every unusual bump and twist that insulted my body. Once I stubbed my toe and mentally picked the date ten days to two weeks hence. If nothing happened by then, hopefully, the RSD will not have spread. One problem with support groups in general is that since people need their chance to tell their story, they will tell it with all the drama that goes with their nightmarish and lonely experience. On the other hand, afflicted people also need a way to stop catastrophizing and to start taking control. How does a support group strike that necessary balance?

However, since I attended the meeting with my husband, I was relieved that he saw how legitimate my suffering was. Even though he had been supportive, if there had been any doubt, now he would see that I was not imagining or exaggerating the pain. I also felt more capable of intelligently speaking about the problem to others in my life.

One very beneficial result came out of the support group experience. Someone in the group mentioned the TENS unit and how it was sometimes helpful. That person was already talking about his doctors wanting to install a morphine pump, so he wasn't all that enthusiastic. But my husband got very excited about it and "bugged" me until I finally called Bill Campbell, Director of Rehabilitation, here at North Penn Hospital. Bill not only helped me with the TENS. He listened. And listened. And listened... I felt that he really took me seriously. He also talked, and talked and talked as only Bill can do, explaining everything and making RSD a "real" word. This interaction with Bill was, indeed, good medicine. The TENS became one more legitimate way for me to take control of my pain. Although it added yet another gizmo to explain to others, I wore it often during the working hours, hidden under clothing, or I'd save it for the evening when I could look forward to a pain free few hours to relax and feel that I was, at least for a short time, a "normal" person.
I used the TENS for about six months. I once wore it while playing black jack at an Atlantic City casino. I was afraid they'd throw me out, assuming I had a new cheating device. However, since I was losing, I guess the management allowed me "to get away with it!"

As time went on , the TENS became my haven. Aside from it's immediate pain reduction, it also served to lower my stress level when I did have pain. When you know you can do something to alleviate discomfort, somehow the suffering becomes more manageable. I felt more in control. I believe control is an important ingredient in pain management. Gradually, I needed the TENS less and less and my pain subsided and my mobility very slowly returned.

As of today, I have a few remnants of RSD. Two of my fingers are still stiff and tender when I make a fist. My pinky is still a bit frozen. I have a shoulder and/or neck problem that I think is the same as I had when my shoulder first froze. Some days, I still have to remove my watch or ring. Every once in a while, I get a pulsating pain down my pinky and left side of my hand. I still cannot sleep on my left side, lest I wake up in the middle of the night with pain from the shoulder and down the arm. I'm presently exercising to get back my strength in an as yet weakened left arm. I can finally crack my knuckles! I can now, without hesitation, clap my hands! Oh, the things we take for granted!
Before I end, I need to put in a word here about secondary gain. When I began to notice the slight diminution of symptoms, I became aware also of a sense of loss. I had lived each day, using so much energy to cope with this invading enemy, I almost forgot who I was without the pain. I am reminded of some of my patients who suddenly notice that they have given up old, hurtful coping mechanisms for new ways of functioning. Quite often, they cry. They almost cannot tolerate the new state of happiness. It's like being released from prison, or a coma, after many years and the world has changed and you don't fit anymore and you're wearing the wrong clothes. I felt this when I first realized that I was having pain free blocks of time: Where did it go? What do I do now? Who am I ? And believe it or not, I also felt: Bring back the pain. This is too scary. I feel naked without it. Also, during the worst part of the ordeal, there were times I could get into the pain. I felt alive. I received attention. People had to help me. I felt guilty about these longings. I'm not usually very able to ask for help unless I have a bone fide reason such as undergoing surgery So, pain and disease served a purpose. I believe it's part of the regressive pull back to childhood when I had the fantasy that someone would always be around to take care of me.

Some of you are health professionals. I hope you will think about this as you work with your patients. They are not necessarily malingerers. They probably feel guilty for having the problem, but also for having unconscious wishes to stay sick and be nurtured. With understanding and guidance as they face the fear of their "new" life without pain, don't be too hard on them. On the other hand, if the secondary gain accomplished by having had this disease becomes an end in itself, tough measures may be necessary. At the very least, psychotherapy may be in order. Only when a person recognizes the fear over the loss of the disease, as well as the benefits of holding onto the disease, can one move in to the next phase of healing.

I also believe that practitioners and support groups should help to convey a more optimistic attitude about RSD. I think it would help if people said, "When you get better. . ." rather than, "This could get worse. . . " I felt that hopefulness conveyed once, when I asked a question at the support group. I asked, "If my pinky is frozen, is it possible that it will ever unfreeze?" Someone said that she knew someone who did eventually obtain full function of a finger. I remember still, the warm sensation I felt in response to that assurance in the midst of an otherwise terrifying meeting. I think support groups should try to help people go beyond merely telling their horror story and work on ways to take control and share creative solutions for symptom relief.

Throughout my ordeal, it was essential that I go through each stage of adjustment: from being overwhelmed and confused to grieving over the loss of what I once was. I needed to face my anger and "Why Me?" protests. I needed to get depressed and frustrated over not having control. I needed to question my reality and trust myself that I know my own pain as well as the inner resources I possess to help myself through a crisis. I would not have reached this conclusion had I not gone through the sometimes unpleasant emotions I felt. No one can get through this disease and just wake up and say, "I'm fine! I'm going to get through this!" People need to go through a process of change. RSD or not, when it comes to change and crisis, this is my personal philosophy and my professional stance. As is true with physical pain, if we cannot avoid pain. If we try to skirt it, it hurts even more.
Along the way, I needed to talk to family and friends, the ones I could trust, the ones who did not tell me how to feel, but who listened, validated and believed in me to get through this.

I cannot say for sure that it was my willingness to face this challenge by permitting myself the passage through stages of adjustment that got me through my bout with RSD. Of course, I'd like to believe that so I'd be more prepared for possible relapse. The idea of the psychological readiness and responsiveness to coping with crises is something to consider when exploring the psychological ramifications of this devastating disease.

I remember driving along one day in February of 1993, approximately a year and a half after my falling down in the rain forest, and the inner barrel began to roll against my skin from the inside out. It was familiar; I knew the sensation would pass as it had in the last few months. On this day, it was particularly intense, similar to the old days when it was a constant pain. I thought to myself: "This is the last time I will feel this. I believe my body is giving me one last dose --just to say good-bye -- just so I won't forget!" I studied the sensation and worked on finding ways to remember it. It did turn out to be the last time I felt this sensation.

Two months later, Heidi Lipshutz called me to ask if I'd be a speaker here and to bring my baton. I was grateful to myself for having concentrated on that last experience so I would be more helpful to you today.
It's been a long journey. I've learned so much. It helps to talk about it. I thank you for listening.

**Phyliss Shanken, MA is a licensed psychologist in Pennsylvania. She is Director of Psychological Services of INTROSPECT of BuxMont at 2321 North Broad Street, Colmar, Pennsylvania 18915, a psychological/psychiatric private practice facility. In addition, she maintains a private psychotherapy practice at the same address in Colmar, Pennsylvania. Her website is: www.introspectcare.com/phyliss.html There you will find another article on RSD.

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