CPPS Resources (Karl Boyken)

CPPS Resources

Like every case of chronic pain, mine is unique, but I'm also pretty sure that I am not entirely atypical. So, it's likely that others who have chronic pain might be able to benefit from my experience. If you suffer from chronic pain, I hope that something that has helped me will also help you. Here are the most important resources I've discovered to date.

Standard Western Medicine

When my pain condition appeared, first, I saw my doctor. He, and the urologist he referred me to, ruled out any serious or easily treatable condition. My urologist told me that the cause of my condition is not understood, and that there was no treatment he could offer. I was relieved to know that I was basically healthy, but I realized I was going to have to find my own way through my pain problem without much help from the medical profession.

The Stanford Protocol

The Stanford Protocol for treatment of chronic pelvic pain was developed at the Stanford University Department of Urology. The protocol was the starting point for healing my pain condition. The book A Headache in the Pelvis, by David Wise and Robert Anderson, outlines the protocol: self-administered trigger point massage, stretching, and paradoxical relaxation. The department offers a six-day clinic for patients who have chronic pelvic pain, where patients are taught the protocol. In the back of my mind, I kept open the option of going to the clinic as a treatment of last resort, but I was able to glean everything I needed from the book.

Self-Administered Trigger Point Massage

Self-administered trigger point massage is the most effective method I've found so far for managing chronic pelvic pain. If I were to do only one practice to treat my pain, this would be it. The Trigger Point Therapy Workbook, by Clair Davies, is the most complete layperson's resource I've found for trigger point massage. The Trigger-Point Self-Care Manual, by Donna Finando, has very helpful illustrations and is a good supplement to Davies's book. The Pressure Positive Company sells the Knobble and the Backnobber, and the Thera Cane Company sells the Thera Cane, all tools I use during my daily trigger point massage routine--along with a tennis ball.

I've found that approaching massage as an exploration of my muscles, rather than as a treatment or a fix, produces the best results. I've built up my massage routine slowly, adding in different muscles one at a time. Trying to add in too many new massages at the same time can lead to confusion if the new routine seems to be leading toward pain instead of wholeness. The first couple of days with a new muscle massage can be uncomfortable. But generally, by the end of the first week, I can tell whether I'm benefiting. If I feel I'm not benefiting, I discard the new massage.

Meditation and Mindfulness

Many of the other practices and techniques I've explored to deal with chronic pain involve mindfulness, to some degree. Meditation helps cultivate mindfulness, and it also helps reduce stress that can contribute to chronic pain. Even before my chronic pelvic pain symptoms appeared, I'd practiced meditation for many years, and I'd been trying to cultivate mindfulness via the teachings of Pema Chodron. Knowing that mindfulness was also used medically for chronic pain, I took the Mindfulness-Based Stress Reduction program at The University of Iowa Hospitals and Clinics. This mindfulness and meditation program is modeled after the one created by Jon Kabat-Zinn at the Center for Mindfulness in Medicine, Health Care, and Society at the University of Massachusetts Medical School.

Mindfulness helps me deal with pelvic pain when it arises, it helps me recognize anxiety and stress that contribute to muscle tension, and it helps me release longtime habits of holding tension in areas of my body. Paradoxical relaxation, which plays a big part in the Stanford Protocol, seems to me to assume some kind of mindfulness.

The Center for Mindfulness has a global directory of mindfulness programs. Jon Kabat-Zinn has written the excellent book Full Catastrophe Living, which outlines the basic program he developed at the Center for Mindfulness. A person could possibly do the whole program on their own, based on this book. There are many other resources on meditation and mindfulness, lots of books, tapes, CDs, and programs.

Paradoxical Relaxation, and Ease of Body Movement and Use

I have found that the way I habitually move and sit and stand has contributed to my chronic pain condition. Consciously relaxing while experiencing discomfort or pain--paradoxical relaxation--is a central technique of the Stanford Protocol. In paradoxical relaxation, when I become aware of pain or discomfort, or of the muscular tension resulting from pain, I consciously invite my muscles to relax. Mindfulness is a component of paradoxical relaxation; I cannot relax if I'm not aware I'm in pain or am tense.

Several years ago, I read the book Senses Wide Open, by Johanna Putnoi, and it opened my eyes to the interaction between mind and body. A couple years later, I took some introductory lessons in the Alexander Technique, a means of teaching people how to more easily and efficiently move and use their bodies. After my chronic pain condition cropped up, I began seeing Rachelle Palnick Tsachor, a local movement therapist. Rachelle is trained in Laban Movement Analysis, Somatic Movement Education and Therapy, and the Alexander Technique. Rachelle pointed out that most chairs are too low for me, which causes my hamstrings to shorten while I sit. I got a new chair at work, a Safco Highland mid-range chair, which has made a big difference. Rachelle also helped me with my stretching routine. Some of the stretches I'd been doing weren't doing what I thought they were doing. She showed me some new stretches that are more effective.

The Alexander Technique work Rachelle has done with me has had the biggest impact on my pain condition. I discovered that my sense of how I use my body was wrong, and I've been learning how to undo and release the inefficient body habits I've acquired throughout my life. There are several good books available about the Alexander Technique, such as Missy Vineyard's How You Stand, How You Move, How You Live and Michael Gelb's Body Learning. But it would be difficult to get much benefit from the Alexander Technique without a teacher. Body use is habitual, and it would be very difficult for someone to discover their own patterns of misuse without a trained teacher.

Stretching and Yoga

For me, stretching and yoga are two-edged swords. If I stretch or do a yoga pose mindfully, slowly, accepting my body as it is, paying attention to any tightening anywhere in my body, then they are very useful tools. If I am aggressive, with some idea of producing a specific result or an image of how my body should function, then I invariably overstretch something and have to deal with more pain for several days. But even when I overdo, stretches and yoga poses are learning experiences.

As with massage, I've gradually built up my stretching routine, adding in one new stretch at a time. With each stretch, I back off whenever I feel tension building anywhere in my body. The best stretches I've found are very passive, demanding very little muscular activity in any part of my body. Rachelle Tsachor, my movement therapist, has been the best resource for stretching that I've found. Several stretches I'd been using were not stretching the muscles I thought they were stretching, and I also learned how to stretch in a more passive, let-go kind of way. Bob Anderson's book, Stretching, has also been very helpful, as has Bruce Thomson's EasyVigour web site. I've also found a number of good stretches at ExRx. Whatever the source of the stretches I use, I've had to be very gentle with them and have had to do them while listening intently to my whole body.

I used to have a daily yoga practice and went to yoga lessons weekly, at the Classical Yoga Center. But I quit doing yoga when my pain condition arose. I've only recently begun going to yoga classes again, at Heartland Yoga. It's hard for me to do yoga nonaggressively when I'm in a yoga studio, alongside other yoga students and led by a yoga instructor. That probably says more about me than about yoga.

Qi Gong and Tai Chi

Years ago, a friend gave me the book Opening the Energy Gates of Your Body, by Bruce Frantzis. The dissolving qi exercise presented in this book has been extremely valuable for me. Nights when I am awake with pain and the ibuprofen doesn't work, dissolving qi always gives me great relief. Whether or not there's anything to the idea of qi--nonphysical life energy--it works for me. I'm also taking Tai Chi lessons from Don Arenz. Tai chi seems to me to be similar to the Alexander Technique in some respects, such as head top suspended, or emptying the nonweight-bearing leg. Even though I do tai chi in a studio with other students and a teacher, I don't have the same problem with becoming aggressive toward myself that I do with yoga.

Counseling and EMDR

Chronic pain and urinary symptoms sometimes made me feel anxious, frustrated, angry, depressed, isolated, and ashamed. Also, it seemed to me that at least some of the bodily tension that contributed to my chronic pain condition might be due to patterns of holding or repressing anger or other emotions. And the fact that my symptoms appeared around the time that my wife and I became empty nesters also made me wonder whether there was some psychological component to my condition. So, I saw a counselor for awhile, Susan Fisher at the Counseling Center of Iowa City.

In A Headache in the Pelvis, Wise and Anderson recommend eye movement desensitization and reprocessing (EMDR) as a method to work with the mental and emotional aspects of chronic pelvic pain. Susan happened to be an EMDR practitioner, so besides more traditional counseling techniques, we tried EMDR. I know that EMDR is somewhat controversial, but the therapy did bring up some issues that seemed related to my condition, and the technique did seem to defuse or resolve them to some degree.

Inspiration

Pema Chodron is a Buddhist nun who teaches practices to develop mindful compassion. Her books, especially Start Where You Are,When Things Fall Apart, and The Wisdom of No Escape, help me be present with the pain, anxiety, and hopelessness that can arise from chronic pelvic pain. Her mindfulness techniques also have helped me see how the way I react to events in my life can contribute to muscle tension and pain. But beyond that, her writing helps me accept myself exactly as I am--the perfect antidote to the feeling of brokeness that accompanies chronic pelvic pain.

Rachel Naomi Remen is a doctor who has brought spirituality into the practice of medicine. Her books Kitchen Table Wisdom and My Grandfather's Blessings contain stories of how people can find peace, hope and a type of healing when confronted with great pain or even death. Simply reading a story or two now and then has had a deep effect on how I look at my own condition.

Chiropracty, Massage and Healing Touch

I've been fortunate to have found a good chiropracter, Dr. Kyle Deden. Kyle listens to me and has a good knowledge of soft-tissue conditions and issues along with his expertise in joint problems. His insights and comments have helped me learn about what's going on with my body and have pointed me in useful directions for self-treatment. Massage has been helpful. I've seen three massage therapists: Kristin Bergman, Patrick Yoeger, and Jason Auer-Sears. If only I could afford to have a massage every day! I also received a couple of healing touch treatments from Jacqueline Phillips via the Healing Touch Spiritual Ministry program at Trinity Episcopal Church in Iowa City. The treatments provided some temporary pain relief.

Heat, Ultrasound, Medication and Supplements

Hot baths, hot showers, and a heating pad all gave temporary relief, and I still often use a heating pad or a hot shower with a pulse-massage showerhead after I stretch. The ultrasound treatments I received during physical therapy were very effective in the short term. I've taken ibuprofen at night, and it helps to take the edge off of the worst pain. But generally, I try to avoid nonsteroidal anti-inflammatory drugs (NSAIDs) as much as possible. I have also tried baclofen, a muscle relaxer, at night, and it seems to help. I received two steroid injections, courtesy of Dr. Timothy Maves, which helped for a couple of weeks. They peeled back some of the pain, which gave me some insights into exactly which muscles might be most effectively massaged. All these therapies are only short-term bandaids, not real remedies, and steroids, NSAIDs, and baclofen have some serious drawbacks. I've also tried curcurmin, derived from turmeric, which has anti-inflammatory properties. I haven't noticed any impact on my pain condition, though.