For those living with chronic pain, there is little relief

CEDAR RAPIDS — A car accident in 2011 has left Brooke Ralston wandering through a complicated maze. One that has been filled with pain, doctors visits and treatments.

She once ran marathons and triathlons but the accident, which caused nerve damage and chronic neck pain, has left her sensitive to sound and light, has trouble concentrating, can't sit in a single spot for too long, and has lost much of her energy.

Even household chores can be difficult to complete some days, she said.

'I kept thinking the pain would go away, that we'd find a treatment that would work,' she said. 'It's a big loss of identity.'

About 100 million Americans live with chronic pain, according to American Academy of Pain Medicine — that's more than those living with diabetes, heart disease and cancer combined.

Chronic pain, or pain lasting more than three months, can be the result of an injury, a surgery gone wrong, or an illness or disease, experts said, and it can present itself as back pain, neck pain, migraines, nerve pain or spinal pain, among other forms.

'When you've got a headache, even for 30 minutes, you can't think until it subsides,' said Dr. Stan Mathew, a physiatrist at UnityPoint Health-St. Luke's Hospital.

Now imagine that pain lingering and never subsiding. It seeps into your everyday life, he said, and can affect mental health as well as physical health.

It's important to put together a team, including physicians, physical therapists and psychiatrists as well as search for alternative ways to deal with pain either through, stretching, breathing techniques or acupuncture.

Mathew works with patients to find the root cause of the pain and tries to alleviate it safely.

The pain can be isolating, Ralston, 33, explained, she no longer works full time, and if she's having a particularly hard day, she may have cancel plans at the last moment with friends.

'I've lost friendships and relationships,' she said, 'with people who are not understanding.'

That's because she looks whole and healthy on the outside, she said. And there have been plenty of times when people have had difficulty understanding what she's going through.

'I've learned to keep things in,' Ralston said. 'I don't want people to view me as weak. I know I'm really strong.'

She's a single mom, and her five-year-old daughter, Rosilyn, is the most important thing in her life, she said. Ralston works hard to be active for her daughter, even when she's not feeling up to it.

'She's too young to see me in pain,' she said.

Ralston swims and teaches therapeutic yoga a few times each week — both build strength, support her pain management, and help heal her mind and body. She recently started receiving acupuncture treatments, about which she is hopeful.

'I have my moments, but it gets very hard,' she said.

She also meets with a bimonthly support group at Mercy Medical Center lead by Dr. Luke Hansen, a psychologist who provides assessment, evaluation and treatment to chronic-pain patients.

'By the time I see patients, they're already tired.' Hansen said, explaining they've often tried different ways to manage pain including medication, injections, physical therapy and other means.

They often become discouraged after not receiving clear cut answers from physicians, he said, and can get frustrated being passed from one doctor to another.

'They're struggling to come to terms with how much pain they will live with,' he said.

Hansen works with patients on a number of issues, including sleep, diet, coping skills and mindfulness techniques.

'We work on acceptance and how to remain grateful for what's still working, what their new normal is,' he said.

Patients experience a good deal of grief, he added, because their pain can, in a sense, cause them to lose their identities — it can prevent them from doing things they love such as riding their bikes, it forces many out of work and onto disability — which adds to their frustration — and it can make being intimate with a spouse or partner difficult.

'I have one patient whose wife left,' he said. 'She wanted more — to travel, to do things that weren't happening because he wasn't able.'

'The hardest part'

The loss of intimacy with his wife is the hardest part for Bob Schneider, 64.

Putting pressure on his hands and feet causes him to feel as if he's touching a 'hot griddle,' he said. It makes it hard to sleep because even the brush of a sheet causes him pain. He often sleeps in the living room on a recliner, with his feet hanging over the edge, he said.

The edges of paper feel as if they are slicing into his fingers, which makes reading — a favorite hobby of his — almost impossible.

'But the very hardest part — it hurts to hold my wife,' he said.

Several years ago, doctors at the Mayo Clinic diagnosed him with autoimmune autonomic neuropathy, which means his body is fighting itself and the nerves that control involuntary bodily functions, such as the heart and lungs, are damaged and degenerating.

'My body translates pressure as pain,' he said.

The diagnosis came after years going from specialist to specialist and not many answers.

'Specialists kept saying, 'It's not my area, and I can't do anymore,'' he said.

His pain has forced him to adapt, whether that means reading his favorite books on an e-reader or altering the way he walks or eats.

Now he is focusing on quality of life and dealing with the pain, visiting different pain doctors and trying different drugs. He works with Mercy's Hansen and attends the biweekly group session, which he said allows him to take off the 'cloak of normalcy' and talk about his pain and his struggles.

'People don't understand what it's like to live like that,' Schneider said. 'It never gets better. And in my case, it's slowly getting worse.'