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My Struggle to Cope With RSD

I AM in my early 40’s and work as a full-time volunteer at an office job using a computer. I had surgery on my spine a few years ago, and I thought that I knew what pain was. So when I was to be operated on in January 1994 for a ganglion cyst in the left wrist joint, I expected some pain and discomfort—but nothing I could not handle.

Within the first few weeks after the surgery, which was successful, I began to notice intense pain in my left arm. It was also swelling and becoming discolored. My nails grew long and brittle, and because of the pain, I could not cut them. Sleep was almost impossible. At first, the doctors and the therapist were baffled, but as the symptoms worsened, the surgeon realized that I had RSD (Reflex Sympathetic Dystrophy), also known as Chronic Regional Pain Syndrome. By then, three months had passed since the operation.

What RSD Feels Like

I had never heard of RSD, but I was finding out in my own flesh what it was all about—PAIN. Pain of the worst kind. Never-ending pain in my hand and arm. Pain as my hand swelled to three times its normal size. Pain that was a constant burning sensation. It was like being in a house on fire, and I could not escape. I am not exaggerating! For me, it was the worst and most persistent pain imaginable. There were so many types of pain in various degrees. At times, the pain was like a horde of bees stinging me. Other times, it felt like a vise crushing me and like razor blades cutting into me. I could not even bear to have my long hair touch my skin—when it did, it felt as if thorns were sticking into me. I was desperate for some relief from the agony.

On one occasion I was suffering so much with the constant, violent pain that I even considered amputating my arm in the bathroom. I wondered how many cuts it would take to get rid of this torture. (Later, doctors told me that amputation does not solve the problem.) I felt like a fox in a trap that seeks relief by gnawing off its trapped limb.

Some Relief at Last!

Eventually, as a last resort, I was sent to a pain clinic for treatment. There I met Dr. Mathew Lefkowitz, a pain-management specialist and anesthesiologist who practices in New York, in Brooklyn Heights. He was very compassionate and understanding. The pain clinic became a refuge for me, especially as I began to understand my disease and the treatment.

Dr. Lefkowitz started with a pain-numbing treatment—regular injections into a nerve in my neck, which would temporarily block the nerve messages causing the pain. As he explained it, the pain is triggered by the sympathetic nervous system. This is the brain’s normal protective reaction to injury or surgery. The theory is that this system is supposed to act like a gate. The nerve sensations go through only while the wound is healing. At a certain point, when the brain sends no more nerve impulses, the gate closes and the pain disappears. In RSD, the gate does not close. The sympathetic nervous system never calms down. It continues to act as if there were still an injury at the site. The doctor told me to come to the clinic immediately any time the pain intensified. Thus, I have been on a regular routine of pain-blocking injections for quite a while.

The injections helped me to tolerate physical therapy, which gives a range of motion to the affected limb and is very helpful for this condition. As time went by, I began to do simple tasks, using both arms and hands. It was a positive beginning.

What Can Be the Consequences?

The constant pain affected me in various ways. I wanted to be alone, to get away; but wherever I went, the pain would go with me. So that was no solution. The arm began to feel like a separate entity that was plaguing my life and my marriage. My husband did not even dare to come near me to show affection. He certainly was patient and compassionate. I had become a one-armed wife, incapable of doing anything. Just trying to pick up a sheet of paper with my left hand was agony.

As yet, there is no cure for RSD, although sometimes it goes into spontaneous remission. In the last stages, osteoporosis sets in and the limb atrophies. That is why intensive physiotherapy is so helpful. Fortunately, I am not at that stage.

How I Cope

Although I still have pain, it is not as intense as it was in my worst periods. However, without the injections, I would not be able to bear it. What has helped me to endure? The positive attitude of some doctors, therapists, and friends. I have also learned coping skills. For my self-worth and dignity, I needed to have some normalcy in my life, in spite of my abnormal condition. Being around workmates who gave me support, without pressuring me, convinced me that I could still be productive. I also found, and still do, that soothing music and relaxing breathing exercises help me. One of my favorite things to do is to lie in a comfortable position with a view of the sky and the ever-changing clouds. Then I meditate and travel in my mind to pleasant places. Laughter is always good medicine, as is a positive attitude—and even more so when you know you have the loving support of family and friends. It is essential to realize that RSD does not have to defeat you. Good medical professionals can help you win the battle.

The experience has made me more empathetic toward anyone suffering pain, and I am motivated to help and comfort others. My beliefs have been a big help. I know why this has happened. I am not some specially chosen victim. God is not to blame. Pain is one of the misfortunes of life that can befall anyone. Earnest prayer has been a boon to me. I have faith in God that there will be a time when pain will be no more. I have been helped by sharing that thought with others with whom I have come in contact. Although RSD is still a challenge to me, I am grateful for the improvement that I have felt. (Revelation 21:1-4)—As told by Karen Orf.

[Box on page 22, 23]

A Doctor’s Viewpoint

Awake! interviewed Dr. Lefkowitz for his description of the treatment. He explained: “We handle all kinds of pain, not just RSD. The most common pain ailment is lower-back pain, which often leads to very painful sciatica. While pain is obviously physiological in origin, there are often psychological influences as well.”

Awake!: Can RSD attack all ages and both genders indiscriminately?

Dr. Lefkowitz: Yes, there is no partiality with this disease. However, we cannot foretell who is more likely to be affected. What I do know is that women usually tolerate pain better than men do. They seem to have a higher pain threshold.

Awake!: What treatments do you recommend for pain?

Dr. Lefkowitz: There are various methods we can use, depending on the source and the intensity of the pain. After all, pain means suffering, and we need to alleviate that suffering. In some cases we use nonsteroid pills, such as aspirin, and their variants. In other cases, such as Karen’s, we use a regional nerve-blocking drug. In extreme cases we might use an opiate. The drawback there is that we have to watch out for possible addiction.

Awake!: Is it inevitable that RSD should pass through all the stages of development?

Dr. Lefkowitz: No, it is not. If we can catch the disease at an early stage, we can abort the process. Take Karen, for example. She is in an intermediate stage, and she may not necessarily go into the final stage of limb atrophy.

Awake!: What do you suggest to help a patient cope with the situation?

Dr. Lefkowitz: Precisely what Karen has done. She has tackled her pain at a psychological level by distracting her mind with pleasant thoughts and images. She is also using physical therapy. And I believe that her faith has been a big help. It has helped her to focus on the situation in a positive manner. Yes, I cannot emphasize faith too much.

Awake!: Thank you very much for your time and patience.

[Picture on page 23]

With Dr. Lefkowitz in his clinic