One woman shares her drug-free strategies and tips for living with pain.
Pain is a signal from the nervous system that something is wrong in the body. Chronic (ongoing) pain means that you keep getting that natural signal, sometimes for weeks, months or years. This type of pain can be caused by many things, from past injury to long-term illness to psychogenic pain (pain with no obvious physical cause).
No matter how it starts, it's widely recognized that people with ongoing pain have more than physical effects. The mental and emotional side effects can be even more draining and can include stress, depression, hopelessness, feelings of worthlessness, anger, divorce, abandonment by family and friends, and even suicidal tendencies.
Cynthia Toussaint, a former professional ballerina from Los Angeles, California, has lived with chronic pain for the past 30 years caused by a condition known as complex regional pain syndrome. She says her pain feels like she is being doused with gasoline and set on fire. In addition, she has many autoimmune conditions, including chronic fatigue and fibromyalgia. Her pain has left her without a voice for five years, bedridden at times and dependent on a wheelchair for going long distances. And she has had all the stresses and emotions that continual pain brings. She even thought about killing herself. But she chose to live and, over time, has found several ways to cope with the pain.
Currently, her health is better than it has been for most of the past 30 years: She is in remission and only has to use a wheelchair once in a while. She spends time sharing what she has learned as she fights for better treatment of women in pain through a nonprofit organization she founded in 2002, For Grace. Reinventing herself and getting passionately involved in her new work have given her hope and kept her going.
"I'm a very positive person now," Toussaint says, "but I was angry for so long. I lost my identity and didn't know who I was for so many years; I was the ex-ballerina, but after 10 years, I had to give that identity up." Toussaint explains that after 20 years, she also learned to befriend her pain. "It's better that we're allies," she says. "I made peace with it. It was literally the idea of 'I love Cynthia and want the best for Cynthia.' "
What worked for Toussaint
- Giving permission. She allowed herself to grieve for the loss of her former self and worked with a therapist to process the feelings. Narrative therapy, journaling and writing a book about her experience helped Toussaint feel happier about herself and her life.
- Going integrative. She worked with an integrative-medicine doctor (often called naturopaths) in addition to her team of Western-medical physicians and ultimately began making her own choices for care.
- Staying active. Toussaint touts this as the absolute No. 1 most helpful thing in living with pain. Even when all she could do was crawl on the floor, she did it. Now, she continues to do a combination of ballet and Pilates, and she swims to keep moving.
- Using acupuncture and acupressure. She found that these ancient Chinese treatments could provide her with physical and mental peace and relief.
- Practicing mindfulness meditation. "I send out thoughts of loving-kindness and positive energy to all the people who hurt me and doctors who said I was crazy," Toussaint says.
- Working with a pain psychologist. Toussaint is working with a pain psychologist at the University of Southern California Medical Center. The psychologist helps her use self-care techniques, such as deep breathing and deepening her mindfulness meditation. Perhaps the most important tool: Helping Toussaint how to see when she is locked in catastrophic thinking (which chronic pain patients often have) and to break the cycle of that kind of thinking with positive mental cues. Toussaint and her psychologist also plan to try biofeedback to help control her fight or flight response, a main driver in pain perception.
Dr. Beth Darnall, a pain psychologist and assistant professor at Oregon Health & Science University in Portland, works with Toussaint's For Grace organization. In her practice, Dr. Darnall helps patients understand how daily habits and lifestyle choices can add to ongoing pain and how to get rid of them. She has had chronic pain herself. She helps patients understand the direct link between pain and stress.
"I come at it from the perspective of, 'It's critical that we gain an exquisite understanding about how your life stress is functioning. What factors are increasing or contributing to stress in your life?'" Dr. Darnall explains that stress and pain work on similar channels. They come from the same area of the brain. "Stress is a lightning rod that catalyzes the pain experience and actually has the potential to contribute to pain."
Once she considers a patient's lifestyle habits, relationships, work environment and daily choices, she helps the patient figure out exactly what is causes him or her stress and reduces the things that cause the stress, which reduces the ongoing pain. Constantly pushing yourself too hard and going to bed late, for example, can add to your stress and increase your chronic pain, even if you don't realize it. "The curious thing with humans is that we're not good at noticing our own choices and connecting the dots. That's why it can be so helpful to work with a coach or pain psychologist and work as a team," she says.
Just as important, Dr. Darnall says, is teaching people how to strengthen the connection between the body and the mind. "I teach people how to shift their responses—mental, emotional and physiological responses to stress and pain," she says. "Simply by learning to use … [the] mind to their advantage, people can really take control of their pain."
The top thing to know about managing ongoing pain and its stress? You have some control, and you can help ease your own suffering. Even if the pain continues, the suffering you feel because of it can be greatly reduced. "If people truly want to put in the time to make changes in their brain and their body, they can get results, but it does require work," Dr. Darnall says. "It's not a passive endeavor."
Published on March 14, 2012; updated on June 5, 2014.