CPPS Resources (Karl Boyken)

CPPS Resources

General Resources by Order of Usefulness, with Comments

There Is No Silver Bullet

The one change I've made that has helped me the most with my chronic pain condition was to give up. I had to quit looking for a cure, quit looking for a way to fix myself, in order to get better. It was the key that opened the door to wellness. The search for the diagnosis, the cure, left me frustrated, dejected, and still in pain. It gradually dawned on me that my condition probably is the result of many contributing factors, many of them related to physical, emotional and mental habits that are not diagnosable or curable in any conventional sense. My case, like every case of chronic pain, 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, in the order of perceived effectiveness, are the most beneficial resources I've discovered to date.

The Stanford Protocol

The Stanford Protocol for treatment of chronic pelvic pain was developed at the Stanford University Department of Urology. The single most important step I took toward healing was to buy and read the book A Headache in the Pelvis, by David Wise and Robert Anderson, which outlines the protocol. The protocol involves 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.

Trigger Point Massage

Self-administered trigger point massage is the most effective method I've found so far for managing chronic pelvic pain. The Trigger Point Therapy Workbook, by Clair Davies, is the resource for trigger point massage. 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 built up my massage routine slowly, adding in different muscles one at a time. Trying to add in too many new massages or stretches 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.

Body Movement and Use, and Paradoxical Relaxation

I have found that the way I habitually move and sit and stand has contributed to my chronic pain condition. The book Senses Wide Open, by Johanna Putnoi, first opened my eyes to the interaction between mind and body. A few years ago, I took some introductory lessons in the Alexander Technique

I've been seeing Rachelle Tsachor, a local movement therapist, and have had excellent results. For one thing, 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. It's 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. She also has done Alexander Technique work with me. Instead of focusing on the "correct" way to move, I'm now concentrating on ease of movement.

Conscious relaxation seems to me to be related to body movement and use. Consciously relaxing while experiencing discomfort or pain--paradoxical relaxation--is a central technique of the Stanford Protocol. People commonly will tense muscles in response to pain. 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.

Stretching

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.

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. Sometimes I still get carried away and overdo, and then I pay the price the next couple of days. But I know that if I back away and treat my body with respect, the pain will pass.

Meditation and Mindfulness

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. The 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. In the guise of paradoxical relaxation, it plays a big part in the Stanford Protocol. Meditation goes hand-in-hand with mindfulness, and in fact, the University of Massachusetts mindfulness program includes meditation.

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 and tapes and CDs.

Chiropracty

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.

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've recently been taking Tai Chi lessons from Don Arenz, which also seems to be helping.

Heat, Ultrasound and Medication

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 and NSAIDs have some serious drawbacks.

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.

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.