This was the title of the fourth annual symposium, held by ACTION Ontario, the not-for-profit organization I chair, on Monday, November 7, 2011, and webcast throughout Ontario. Living “well” when you hurt, sounds very much like an oxymoron. How, in the name of God, do you live well when you have unrelenting pain that robs you of the many things in life that “normal” people can do, such as having a family, working as a productive member of the society and enjoy life? I am here to assure you that it can be done.
First, when you, as pain sufferer, must claim ownership of your pain and decide you will navigate your “own ship” – with the help of professionals, of course. Regardless, you are still the captain. The symposium was fully organized and run by chronic pain sufferers. More specifically, it was organized by people who suffer from neuropathic pain arising from damage or dysfunction of the nervous system. It spoke to all pain patients – regardless of the source. The principles are all the same.
Living with chronic pain and managing it requires skills and the good news is that they can be learned. During the symposium patients and different professionals presented an array of therapies and/or skills that have been found to benefit pain sufferers. Not everything works for everyone. There does, however, exist a veritable “buffet” of options and skills, that pain sufferers can use. Here is a sample of such techniques:
Humour therapy. Laughter is said to prolong life and has been shown to provide numerous benefits. A stress management/humour consultant, trained as a clown, has taken her “art” to hospitals, institutions and gatherings, provoking laughter and teaching its benefits. To summarize, she said that humour can be learned and provides healing while it enhances creativity, flexibility and resourcefulness. Laughter reduces stress, prevents burnout, increases communication and provides lots of positive changes in the human body such as reduction in blood pressure, reduction in stress hormones, release of endorphins (the body’s own pain killers) and the list goes on and on. For those interested, check www.lightenupproductions.ca <http://www.lightenupproductions.ca/> .
Mindfulness Meditation. The concept was first created by Dr. Kabat Zinn several years ago and relates to “awareness by paying attention to the moment”. Jon Kabat Zinn opened up the first stress reduction clinic in Mass Med Centre almost 4 decades ago. He taught that when people are stressed, they have four options: change the situation; get out of it; change our response to stress or stay stressed out and miserable! Pain is a form of mental and physical stress. Scientific studies over the past few years have shown that indeed practicing Mindfulness Based Stress reduction (MBSR) is associated with a reduction of pain, decrease in negative body image, mood improvement, decreased medication consumption and increased self-esteem. If you learn the technique (taught in groups once a week for several weeks running by trained therapists) and continue practicing it at home, the effects are sustained for years
Tai Chi. This is an ancient Chinese technique that involves low impact exercises performed in a slow methodical fashion. It is suitable for able bodied patients as well as people with disabilities. The technique has been shown to provide muscle relaxation, increase bone density and reduce pain while increasing function and quality of life. A recent study on patients with chronic widespread pain (often called fibromyalgia) was published in a serious medical journal and confirmed indeed the positive results in those who practice consistently.
Acupuncture. This is another ancient Chinese technique that involves the insertion of very slim needles in points on the mody (which actually correspond to the sites from which little nerves exit through the skin). It has been shown in many studies to relieve pain, relax muscles and improve functionality.
In the examples provided above I’ve outlined of techniques that are not drug-based or surgical. In general, how does one learn and apply self-management skills? Self-management can be taught. There are courses out there that teach “core skills” such as problem solving; decision-making; efficient use of resources; creating proper partnerships with health care providers, and taking action to affect change. These courses are based on adult learning principles and promote “self efficacy”, not only knowing what to do, but believing in your ability to organize and integrate multiple skills in order to control day to day situations. Studies have shown the positive results of self-management training programs.
A pioneer in our country is Dr. Sandra LeFort, a trained nurse who did her PhD many years ago at McGill University on the subject of self-management. She then promoted a community-based Chronic Pain Self-Management Program, which is now taught in many parts of Canada, USA, Denmark in Europe, and just started been applied in Australia. Dr. Lefort has received several awards for her pioneering work in this field. The fruits of her efforts have enlightened the lives of many people with chronic pain. For more information on Dr. Lefort, log into http://patienteducation.stanford.edu <http://patienteducation.stanford.edu/> and check out the Chronic Pain Self-Management Program (CPSMP).
Additionally, please visit Action Ontario (www.actionontario.ca <http://www.actionontario.ca/> ). Information about the symposium we just had and agencies currently offering CPSMP in 5 or more Canadian provinces, will be posted shortly. Additionally, for those of you who suffer from chronic pain or have a loved one with chronic pain should turn on your TVs Saturday, November 19, 2011, 10:30 am (wherever you are, local time), to watch the Chronic Pain video for Canadian Health & Family with Dr. Marla Shapiro on CTV. The video was shot in my hospital.
It is worth listening just to hear one of my patient’s stories. She is a lovely woman whose serious painful neurological condition from birth was not diagnosed until she was 46 years old. Pain robbed her of her life until proper a diagnosis was made, leading to five surgeries! Today, my patient is not free of pain but has taken control of her life (by combining helpful partnerships with health providers, medications and lots of self-management techniques) and she successfully leads ACTION’s patient group, to ensure the patient voice is heard in our healthcare system and in any discussion of healthcare reform. Her inspiring story needs to be heard.
Angela Mailis Gagnon, MD, MSc, FRCPC(PhysMed)
Director, Comprehensive Pain Program,
Senior Investigator, Krembil Neuroscience Centre
Toronto Western Hospital,
Chair ACTION Ontario www.actionontario.ca