the Townsend Letter for Doctors & Patients
Can We Do About Pain?
by Lois Berry
(excerpted from her book Cancer Saved My Life)
|Order this issue!|
I am a longtime survivor of cancer and what I have learned about living through that experience has enriched my life in many ways. In the book, Cancer Saved My Life, I tell my story about breast cancer which metastasized to the bone. I share my personal journey through the illness and subsequent recovery from it. I wrote this book because I wanted to share the knowledge I gained about such things as dealing with stress, forgiveness, spiritual renewal and the healing power of prayer. For me, and I believe for others, these things can add to a happier and more joyful life for everyone, not just cancer patients.
A discussion of pain is a difficult subject because there are many degrees of pain. Our ability to tolerate pain is different and our experiences vary.
Acute pain is a signal to the body that it has been damaged in some way. It is any physical pain with a discernible cause. A simple example would be hitting your thumb with a hammer. Chronic pain is persistent and constant. It may be in just one specific area or it may be the kind of pain that manifests itself in many areas of the body.
Pain that we know is temporary from surgery or an injury can be dealt with effectively with pain medication. However, long term use of medications is not advisable nor does it solve the problem. I have had pain of varying intensity over the years so I can speak from experience.
Years ago I had excruciating pain from a disc that slipped in and out in the lower part of my back. There would be long periods when I was pain free. Then, there came a time when it became so bad that I had trouble functioning. I know what it's like to get up in the morning wondering how I would get through the day. I did take pain medications at that time when the pain became unbearable. However, they were a mixed blessing because although they lessened the pain they made me feel sluggish and depressed and they did not solve the problem.
X-rays did not reveal what was causing the pain so my doctor tried everything. I wore a brace, went to an osteopath and even had traction in the hospital in an attempt to realign my spine. Nothing worked and I finally had a myelogram. This is a procedure where the spinal fluid is withdrawn and a dye is injected into the spine. An X-ray film showed that the disc had ruptured and the pieces were pressing on the nerves in my lower back. Successful surgery was performed, my spine was fused to my tailbone with screws and I was finally pain free. So in this case, medical intervention solved my problem.
Another time I was rear-ended in an automobile accident that resulted in pain in my head and down my arm. Medical tests showed that I had a partially herniated disc in my neck and a bone chip. The neurosurgeon wanted to operate and told me terrible things that could happen if I did not have surgery. One of the things I remember distinctly is that he said I could become paralyzed. My decision was not to risk surgery without trying other things. This was what I call manageable pain because it didn't incapacitate me, but it was persistent.
After going to several physical therapists that were not able to help me, I found a therapist who practiced myofacial therapy which is a different kind of procedure. The therapist finds and uses trigger points in the body to effect healing. It was amazingly effective for me.
I feel very fortunate not to have had much pain with my cancer. I experienced a brief period of pain and discomfort from the radical mastectomy after my breast cancer, but had none with the bone cancer. My oncologist did not believe me at first and said it would be difficult to treat me if I minimized my pain. I did finally convince him that except for a sharp twinge once in awhile I was really pain free. I attribute this to my mental attitude and the fact that through spiritual intervention I had no fear. Due to the lack of pain and the fact that my treatment had no side effects, I came through my cancer experience feeling very well.
Other cancer patients are not so fortunate and the ones I have been privileged to know learned to deal with their pain in many ways. They were neither passive nor long-suffering patients. They tried many different things such as, acupuncture, relaxation techniques, biofeedback, exercise, and, for many, the power of prayer. They also went to a support group to learn about what worked for other patients. The camaraderie in that group helped tremendously with the mental attitude of the patients who attended. It really helps to know that you are not alone.
Chronic pain is a different problem altogether. An experience I had with pain about a year and a half ago gave me a new respect for people whose pain is unrelenting and unending. I had been in very good health for many years when I had a sudden onset of pain all over my body. It was in my arms, hands, shoulders, hips and legs. I cannot tolerate most pain medications so I had very little relief. It was like being healthy one day and an invalid the next. It began in October and by January I was in a wheelchair because the pain was so severe I couldn't walk. My doctor was as mystified as I was until a specialist diagnosed my problem as PMR (Polymyalgia Rheumatica). I don't know whether that diagnosis was correct, but I reluctantly agreed to take a low dose of prednisone. I say ‘reluctantly' because I do not like to take drugs and I also knew that there were possible side effects from this one. I believe this helped, but it still doesn't explain why the pain was completely gone in the next two months. I used the wheelchair for just three weeks, then a cane and finally the day came that I could say I was pain free.
I prayed a lot for healing and I believe those prayers were answered. It was a humbling experience and it gave me a new respect for people who have chronic pain. We need to learn something from every experience in our lives and I think I did. Why did it happen? I don't know, but recovering from that episode of pain gave me a renewed appreciation for my life and filled me with joy.
I cannot even imagine the agony of being in pain every day of one's life. I recently read a book The Chronic Pain Workbook by Ellen Mohr Catalano, M.A. that explains that this type of pain is seldom cured. Rather, the patient must learn to control the pain rather then let it control him. Chronic pain affects every aspect of the patient's life. Often the person suffering such pain feels that family and friends do not understand. Family and work relationships suffer and this, in turn, causes depression. The author believes new strategies involve working with the whole person and not just the symptoms. Pills are replaced with skills such as stress management, self-hypnosis, biofeedback, exercise; anything that brings about relaxation. When you are in constant pain your whole body is tense and that causes more pain.
The best book I have read on this subject is Chronic Pain: Taking Command of Our Healing by Wm. R.B. Anderson, PhD with Jesse F. Taylor, PhD. Anderson says, "Unfortunately, the Medical Establishment is slow to expand its range of theories in the search for effective treatments…while many doctors will, informally, admit that emotional effects are important in healing, they are hesitant to give professional credence to procedures which treat emotions in order to heal physical illness.”
The authors believe that emotional trauma lies at the base of most chronic pain. The ideas presented in this book are not offered as an alternative to successful therapy. Rather, they are offered as an aid to hasten healing. Our belief systems collected over a lifetime are not arrived at consciously. In fact, many of them are buried deep in our subconscious mind. From my own experience, I know that treating just the disease is not enough. It is a joint effort between patient and doctor.
There have been extensive studies on endorphins and their role in controlling pain. Endorphins are chemicals secreted by the body that are natural painkillers. Production is unpredictable and not everyone produces the same amount of endorphins under each circumstance. It has been proven that stress and fear reduces the amount of this chemical that is produced. So, it would seem like common sense to work toward relieving the stress and fear in your life in an effort to boost your body's healing capabilities.
I talked to a friend who has been suffering with pain for years. His illness has been diagnosed as fibromyalgia or chronic myofacial pain syndrome. This is an incurable condition that produces pain in the fibrous muscle tissue. Over the years that he has been afflicted with this disease, he has tried almost everything that medical science and alternative medicine has to offer. The following is what he said in his search for healing. "My most severe chronic pain began in January, 1996 with pronounced pain at the end of my rib cage. I do not know what the trigger (or cause) for this onset of pain can be attributed to. Trauma, of one sort or another, has been mentioned in literature as a cause but some pain specialists discount this notion. I guess my initial painful episodes were the result of emotional stress.
"I was referred to a doctor who specializes in Rheumatology/ Osteoporosis/ and Fibromyalgia diagnosis and treatments. Mainstream doctors are sympathetic if they have studied or been exposed to the new evidence and AMA diagnostic procedures.
"Through the years my symptoms and pain levels have varied. Conventional and non-conventional medicine have been used, none with much success. My treatments have included acupuncture, physical therapy, biofeedback, and some counseling. I have not gone to a pain clinic.
"I have attempted to resolve a personal problem by moving and living by myself. Since then, my stress level has been reduced and thus my pain levels and frequencies of flare periods have diminished greatly. I have stopped taking long-term medications such as Neurontin and Vioxx.
"I finally realized I had a drinking problem and am now in treatment. I do feel much better since I stopped drinking. However, as I write this I am in a flared condition with increased pain and I have no idea what triggered this episode. These episodes are much like the onset of the flu, but without the stomach distress, nausea or head cold symptoms. A lot of generalized pain in the muscles and joints is typical.
"Most of this condition, or a great deal of it, may be induced by weather changes or emotional stress. At least these two seem to affect me with regularity and predictable results.”
One of my daughters had to have surgery for a suspicious growth on her ovary. The surgeon would not know until after the operation whether it was cancer or a benign cyst. She was very fortunate that it turned out to be the latter. The most remarkable thing, however, was how she handled the pain. Growing up she was very fearful of any kind of pain even if it was a minor thing like a shot.
She stayed with me after her surgery and I was amazed at how quickly she recovered with a minimum of pain. I asked her how she accomplished that and this is what she said: "Several things helped me deal with the pain of my surgery. I read Dr. Bernie Siegel's book Love, Medicine and Miracles and it gave me hope. I followed my oncologist's suggestions on getting in shape before the surgery, which helped me recover without any problems. I also was pretty good at following his instructions such as limitations after surgery. I think trusting my medical team (including nurses) was very important to me.
"Siegel's book suggested that I could ask the doctors to talk to me during surgery. It would be like hypnotic suggestion. I asked the anesthesiologist to talk to me about how I did not smoke and had no fear of pain. I had no compulsion to smoke after surgery and I had been afraid that would be a problem.
"While I was in the hospital, my surgeon lectured me because I was not taking the pain medication as regularly scheduled. My response to him was it was because I was in no pain.
"I have no doubt that for me a lot of previous pain was caused by fear. Clearly, when a person is afraid they tense up and, as a result, have more pain. Relaxing is part of the key. But to me, it was a miracle that this one suggestion during surgery took away the fear of pain for me and, as a result, the pain itself.”
I asked a nurse friend to give me her observations on how pain is handled in a hospital setting by both nurses and doctors. She sees pain on a daily basis and this is what she said: "Almost without exception, the patients I deal with have pain at one point or another. Many discovered they were ill because the pain started and others have pain after they have surgery. As nurses, we assess the entire patient at the start of each shift, reviewing each system such as cardiovascular, respiratory, nutrition, etc., including a ‘system' of comfort. We view comfort as an important part of the patient's well-being and over the past few years have focused on improving our assessment skills and also helping the patient identify and define their pain.
"We evaluate the location, duration, aggravating factors and intensity (scale of 0-no pain to 10-unbearable pain), so that as different staff tend to the patient, we have a more consistent process for evaluating the pain. That being said, the process for achieving acceptable patient comfort becomes a gray area because pain is very different to different people. Another system we assess is psychological and of course one's sense of self, loss of power over one's own body and one's experiences with pain in the past (his own or that observed) can all greatly influence one's perception of one's own pain.
"Although it may not be correct, the medical profession's general first line of offense against pain is medication, There are safe standards for pain medication doses and doctors generally order a range for the patient and have the nurse use her judgment on what may work for the patient, then adjust accordingly. I find that I assess the patient, taking in his information about his pain, then observe his non-verbal behavior as well as listen to his other concerns.
"Many times solving other concerns can decrease the pain level and thus require less medication, usually a narcotic. This is where the psychosocial aspect comes in, watching family interactions, observing the timing of the pain medication request (when the patient is alone, frightened) or even comparing or competing with a roommate. Two patients with similar surgeries and assumed similar pain can have very different levels of pain based on many of these factors. Something as simple as repositioning, changing temperature, backrubs, quiet, helping the patient understand the reason for the pain or staying a few extra minutes in the room can decrease the patient's pain. Yet, we as nurses are at times rushed and may find medication the most available and convenient answer. We are working on that!
"I think doctors try to keep their patients comfortable with medications, but when what they have ordered doesn't work, nurses often are the ones to suggest alternate medications, dosages, etc. and become the patient's advocate for comfort. Because we are with the patient so much more, we have a better sense of what else might work. Most doctors seem sensitive to the patient's discomfort, but don't feel the urgency for change since they are not with the patient.
"For chronic pain situations, there are Pain Clinics at most major medical centers to which doctors will refer difficult cases. I would say that these cases are considered troublesome by doctors (and many nurses) and we probably do not appreciate all the factors that are involved in the patient's pain and these types of patients get labeled as drug-dependent, psychologically weaker and imbalanced.
"This is an area we all need to work on. it is hard to empathize with a patient who says he is having horrible pain, yet is on immense amounts of drugs, far greater than most patients in similar circumstances would require, and often his non-verbal behavior does not demonstrate intense pain. We have to remember, however, that this type of patient has REAL PAIN within his own perception and he needs help dealing with it and overpowering it. This actually goes for all patients and their pain.
"Some patients do deal with pain better than others. One interesting observation that I have discovered is that elderly people seem to deal with pain in a more accepting manner. Men and women seem to deal about the same. The difference is mostly based on a person's personality, their own perception of what pain is all about, their sense of being part of their healing process and the support they have within the family circle.”
The following comments are the observations of a caregiver. Although she has never been in pain except during childbirth, she has had to deal with pain in varying degrees of severity with her husband and children. She told me that she thinks pain is a very personal thing. Individuals seem to have different tolerances and handle it differently.
She feels that mind and emotions play a big part. She believes that control is a major issue. Being able to let go and know you are not in control of your life helps with getting rid of pain. In childbirth, learning how to relax is key, in her opinion. When she was delivering her first child, she remembers how the girl next to her screamed for hours until she finally asked the nurse if this person was going to have her baby soon. The nurse replied, "You are a lot farther along than she is.”
Any of you who have children, has probably noticed that they have different tolerances to pain. I know I did. It seemed that one child didn't feel pain as acutely as another. This caregiver shares the reactions of her children. One would be hysterical with a slight injury while another would hardly react. She felt that in addition to the pain their emotional makeup was different.
When her husband became ill, it was a long time before he received a diagnosis of cancer, but he was in pain. He had severe headaches and went to a clinic that specializes in this disorder. They used biofeedback along with other techniques in an effort to get to the bottom of his stress level. The patient knew something was terribly wrong and it manifested itself in headaches and also painful backaches. What is interesting is that when he knew he had cancer the headaches and backaches disappeared.
This caregiver doesn't give doctors very high marks in dealing with a patient's pain. Their solution is just to give medicine without trying to find the cause. From her experience, she says it is important to take as little medication as possible in the beginning because long term, as you have to increase the dosage, it might not work as well. Doctors should be looking carefully for side effects and allergic reactions.
As the nurse stated, when pain is beyond the control of the doctor, he will often suggest going to a pain clinic. This caregiver feels that pain clinics, however, are only as good as the patient attending. If the patient doesn't listen and cooperate, they cannot be successful.
The most helpful role of the caregiver is to do research so she will be knowledgeable about her patient's illness and to be an advocate for that person. One of the things this caregiver mentioned was the need to be aggressive in reaching doctors; not allowing the patient to go too long without help. Also, it is important to monitor medicine intake and to encourage consistency. She found that if her husband skipped taking medications prescribed by his doctor, the consequences were serious.
As an advocate when her husband was in severe pain because she had done research, she was able to persuade his doctor to perform spinal nerve blocks. At the time, they were really helpful and necessary, but had never been suggested by the attending physician. She felt good about being the one able to get him this help.
When a member of the family has a serious illness, it is hard on everyone and the caregiver tries to keep a balance. In this particular instance, there were many months when the children could not have their friends come to their house because their father needed absolute quiet. The patient becomes the primary concern and everyone suffers to some degree.
Looking back, this particular caregiver said, "I guess what I would do differently is to be more sensitive and aware of what was going on. I would watch mood swings and language more. There is a lot of emotional pain associated with physical pain and if I had dealt more with the emotional pain, it could have helped the physical pain.”
There are many natural remedies suggested for pain. If you are interested in exploring that possibility I would suggest that you find books on that subject at your library. Since most natural products are harmless, there is no reason not to try them.
Lois Berry, author, has released her personal story of tragedy and triumph in her first book Cancer Saved My Life.
Berry tells the story of dealing with cancer, not once, but twice. She was diagnosed with breast cancer in 1969, and had a radical mastectomy. Four years later, the cancer returned, this time in her pelvic area. The title of the book bares witness to its content which is bound by a buoyant story of overcoming the odds and gaining spiritual peace and physical well being. As a "survivor” she speaks regularly to cancer support groups and counsels with individuals in the midst of coping with the disease. She has also completed her second book, The Doctor Who Dared to be Different, a biography of her oncologist, the late Dr. Glenn Warner. Berry believes he saved her life by going outside of standard medical practice and dealing with the mind and soul as well as the body. Her current book reflects much of what she learned from his work with her as a patient.
The book is published by iUniverse.com, and is available through Amazon, Barnes & Noble and Island Books (Mercer Island, WA, 800-432-1640). For further information, contact the author at: firstname.lastname@example.org
our pre-2001 archives for
further information. Older issues of the printed magazine are also indexed
for your convenience.
© 1983-2002 Townsend Letter for Doctors & Patients
All rights reserved.
Web site by Sandy Hershelman Designs
|February 22, 2003|