Patients with chronic pain give advice
Barby Ingle was 29 when a van crashed into the back of her car and pain became the central feature of her life. Then after the crash, doctors diagnosed Barby with an auto-immune disease that robbed her of her ability to do the work she loved as a cheerleading and dance coach and bound her to her bed for seven years.
Marine veteran Norman Hanley suffered from injuries as well as osteoarthritis and fibromyalgia, which at times became unbearable. His opiate medication made him “feel like a zombie.”
Barby and Norman are far from alone in their daily pain; one in five Americans live with chronic pain. It’s a crisis that has fueled an epidemic of social isolation, depression, financial hardships, job loss, and opioid use and overdose.
Eventually, by taking control of the treatment regimens that sometimes created more problems than solutions in their experience, both Barby and Norman began to learn how to manage their pain. Norman, 43, found relief through electromagnetic pulses, and now rarely takes opiates, using them only as a last resort.
Barby discovered other treatments eased her pain without causing the brain fog she felt when she was taking an opioid.
“I’m finding ways to manage and maintain, to live a life that has a purpose versus being alive just to suffer,” said Barby, who is 46 now and lives with her husband in San Tan Valley.
Barby’s family started the International Pain Foundation, which she manages, to help others learn from her journey. Norman formed and manages the site, Menforfibromyalgia.com, as a resource for men diagnosed with fibromyalgia, a disorder that causes widespread musculoskeletal pain. Here are their top tips for other chronic pain sufferers:
Be Your Own Advocate
Barby considers herself and her primary-care doctor the heads of her medical team. He ensures that all her treatments are safe, and together they make decisions about her care. Norman says communicating with providers is key.
“‘Here’s info I learned. I want to be part of my own medical treatment,’” Norman said, giving an example of how to start that conversation. “If a doctor is not willing to listen, you have to find a new doctor because you can’t get well in that situation.”
Describe Your Pain
“It took me three years to learn that the better you describe your pain, the better care you’re going to get,” Barby said. When she told doctors she felt like she was on fire, they diagnosed RSD (Reflex Sympathetic Dystrophy), known for its burning pain.
Do Your Own Research
Norman researched possible treatments and medication side effects, leading him to eliminate or reduce several medications. He advises others to dig deeper than WebMD and don’t be afraid to ask questions from providers and support group members. Barby encourages people to try a variety of treatments as advised by your doctor, because you never know what will work.
Find Positive Support
Barby said she leans on close family and friends, avoiding negative people, and online interactions. Norman sought out in-person and online support groups, which boosted his spirits, reminded him he was not alone and that, “It is okay to not be okay,” he said.
Take Simple Action
- Incorporate a mindfulness or meditation practice to help breathe through pain flares.
- Experiment with short periods of light, stretching yoga.
- Increase your water intake (can ease headaches).
- Prioritize your time so you have energy for what you want to do.
- Have your partner/spouse attend physical therapy and massage sessions to learn techniques they can assist you with at home.
- Talk to a therapist or spiritual leader about the emotional effects of chronic pain.
- Get tips from the health department for chronic pain relief on our website.