Rising Out of Pain
By Diana Reynolds Roome
Beto Telleria is on fire with pain. Not only does he feel pain most of the time, he’s also burning with determination to help others in the same situation.
In a succinct expression of his philosophy, a phoenix rising from ashes is the logo of For Those in Pain, Inc., a nonprofit community service organization founded by Telleria in 1994.
Dedicated to helping people alleviate and manage pain, the organization has grown within limits imposed only by Telleria’s energy. His creativity and commitment seem boundless. Among the services offered at the center are free biweekly education and support classes at four different locations around the Bay Area. One-on-one counseling and a referral service help people negotiate inevitable medical, legal, insurance and employment complications, as well as family adjustments.
The small Mountain View office houses a library with books, articles, and audio and videotapes. The first annual For Those in Pain conference will take place this fall at the Mountain View headquarters of Alza Corporation, which is co-sponsoring the event with El Camino Hospital’s Pain Committee.
But Telleria is mostly aware of how much more needs to be done. Since 1996 he has been slowed down by the effects of a severe accident that damaged his spinal cord and landed him in a device called a halo – essentially a cage screwed into the skull that stabilizes the neck while the spine heals.
“God has clearly placed me into this wild ride of an internship,” says Telleria, referring to a history of learning from his own pain, starting with severe headaches after an injury in college, and including a ruptured appendix and two spinal injuries. “But if you know it from first-hand experience, you have an edge of insight into the pain of others.”
One thing Telleria knows first-hand is that acute and chronic pain are totally different realities.
“With acute pain, you can duke it out alone. Chronic pain has to be dealt with in the context of relationships. When it’s bad enough for long enough, it infiltrates every nook and cranny of your life – love, work, play.” When pain creates great economic burdens, Telleria adds, lives often disintegrate. “A John Wayne attitude doesn’t work real well. That’s why our motto is ‘From solitude to community,'” he explained.
FTIP classes help participants learn to accept their limits and manage their pain, rather than letting it manage them, says Shannon Walker, a member of the group who had to give up her job as a radio reporter and news anchor after her life was shattered at age 27 by a rare genetic connective tissue disorder.
“Chronic pain grates on your spirit and sucks the energy out of your soul. I know I must face the pain and the limitations it imposes on my life. Yet at the same time it helps to remember I’m not my disease, I’m not my hip, back and neck pain,” Walker said in characterizing the support she derives from FTIP.
“This is not a moan and groan session,” agrees Elizabeth Mersereau, who started attending El Camino’s FTIP pain management class after an attack of shingles became chronic herpes zoster, a condition that produces pain like a constant toothache in the head and face. “But it’s helpful to know others in the same situation. You learn from them, too.”
Talking and listening are a central part of the pain management program at El Camino Hospital.
“People tell us their stories,” says Reverend Mary Ellen Garnier, whose chaplaincy team visits every patient at El Camino. “We try to be a listening ear that isn’t judgmental.”
Most people come here with pain, says Lynne McCoy, clinical manager for medical services and a clinical nurse specialist in pain. “Some kinds are easier to take care of, like a fracture—we know that hurts. Pain medication usually works with acute pain, but chronic pain needs varied interventions.”
Since 1997, El Camino has had an interdisciplinary pain management committee with representatives from almost all departments of the hospital. If one method of alleviating a patient’s pain doesn’t work, a number of approaches will be tried. Alternatives range from heat and ice therapy to hypnotherapy, music and massage. For many of these treatments, the hospital refers patients to other resources in the community.
“We let patients know it’s their right to have pain continually assessed and addressed,” says McCoy. Generally, patients are asked to assess their pain on a scale of 1 to 10, or using the Wong-Baker FACES Pain Rating Scale, a graphics tool that transcends age and language barriers by helping people identify their own discomfort levels.
Last week, El Camino Hospital was accredited by the Joint Commission on Accreditation of Healthcare Organizations, which recently standardized pain assessment and treatment procedures. Pain is now measured as the fifth vital sign, along with pulse, blood pressure, temperature and respiration. This helps diagnose its presence in patients who are unable or unwilling to communicate it.
“Sometimes a patient isn’t acknowledging their pain or sharing it,”says McCoy. (According to a recent Gallup poll on pain in America, 64 percent of pain sufferers see a doctor only when they cannot stand the pain any longer.) “They might have grown up with the message that they should work through pain, or that their doctor will take care of it. They’re not acting as an advocate for themselves. But a patient needs to work with the nurse and physician to find a solution.”
While there is concern about patients who under-report pain, reported pain has not always been adequately treated by America’s healthcare systems.
“Pain is often discounted,” says Walker, who suffered severe depression and subsequent anorexia after her diagnosis. “I wouldn’t have gotten so ill if I’d had good pain support. I was told [by another Bay Area hospital] that nothing in my tests or X-rays backed up what I was telling them. And though they didn’t say it, I could see in their faces that they were thinking it must all be in my mind.”
According to the Gallup survey, four out of 10 adults say they experience pain on a daily basis. For some, it’s a passing discomfort; for others, it is a condition that completely changes their lives.
“Pain for you and pain for me can be very different,” says Garnier. “We need to trust people when they say they have pain.”
Pain retards healing and must be taken seriously, whatever its source. Yet doctors are sometimes reluctant to use narcotic drugs in severe cases, even though research studies show no correlation between their use in properly controlled medical settings and subsequent addiction. According to a recent study at the National Institutes for Health, untreated pain, especially early in life, can permanently rewire the nerve circuits, making the patient more susceptible to chronic pain later.
“We have a neurological pain memory,” says Telleria. “If you’ve suffered too long, pain can be burned into your nervous system.”
Pain that is established is also much more difficult to control. Mountain View chiropractor Linda Paris-Bell, D.C., has noticed an increase in repetitive strain injury (RSI) in recent years. Individuals seek treatment for acute pain after a fall, but with chronic pain such as tendonitis or backache, they often ignore it until it becomes intolerable, she says. “Then many people don’t just want to take medications to control pain; they want to get the problem fixed.”
Because such injuries threaten people’s ability to continue doing their jobs, Paris-Bell works with companies to educate employees about taking care of their bodies and preventing pain in a multitude of different working situations, from keyboarding to driving buses.
There is a wide range of resources for pain management, including physiotherapy, physiatry, pain psychology, chiropractic, acupuncture, osteopathy, Feldenkreis, massage, yoga, relaxation techniques, training in self-hypnosis, meditation and biofeedback. Exercise in warm water can be very beneficial, and both the YMCA and the Community Association for Rehabilitation offer pain therapy in heated pools.
For Those in Pain is there to help people come to terms with that loss, and build a good life based on the new circumstances.
“The me who I was is dead,” says Walker, who used to hike and go ballroom dancing. “It’s like having a whole new life, and it’s still hard for me to accept sometimes.”
“Most people don’t know that the phoenix in ancient myth set himself on fire,” says Telleria. “One of the hardest things for those who live with chronic pain to do is to accept that they may never be the same again. You have to make the choice to leave the old you behind. You’re not going to rise again until you put your old self away.” For more information about For Those in Pain, Inc., call 968.2323 or email. FTIP Pain Management and Support Classes take place at El Camino Hospital the first and third Wednesday of the month from 1:30 to 3 p.m. For information, call 1-800-216-5556. For details about other classes in the Bay Area, see www.forthoseinpain.org. (https://uspainfoundation.org/?)
(from Mountain View Voice – Friday, June 08, 2001