The pain of it all

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Cari Weaverling keeps up with her two sons, Tony, left, and D.J. Leate as the pair explore Woodland Park. Weaverling suffers with fibromyalgia and has widespread, chronic pain. She exercises, goes to physical therapy and takes pain medication, but still is always tired. “People say they understand. They don’t understand,” she said. “I can’t go out and play with my kids, just kick a ball with my kids. It’s heart-wrenching.” Karen Nichols/Daily Inter Lake

Posted: Monday, April 21, 2008 1:00 am | Updated: 2:21 pm, Mon Jul 13, 2009.

For those in the Flathead who suffer chronically, Kalispell clinic offers treatment, hope for healing

Sam Bussey just rolled his ankle.

The rural Kalispell man was a railroad brake conductor in Wyoming two years ago, just walking on the rocks and gravel that held the track.

His right foot came down wrong.

His ankle twisted - radically hard, 90 degrees to the side.

It was a dime-a-dozen misstep that led to a lifetime of crippling pain.

A ghost-like vise-grip feeling constantly crushes the top and arch of his foot. The inside of his ankle sometime feels like exploding. His brain keeps telling him that a knife is stuck in his shin. His foot is purple and red most of the time.

Sometimes, everything feels like it's on fire - even after four operations.

"I fell pain all the time, but the levels vary in intensity," the 41-year-old former Kalispell businessman said.

When a doctor or nurse asks a patient about pain, the answer is typically described on a scale of 1 to 10.

Bussey's pain floats between 4 and 6, with occasional spikes up to 9. Shortly after his accident, he sometimes hit a 10.

He can't do much except mostly sit at home, and endure, and go stir crazy.

"I always used to think I was a tough guy until this happened. … it sucks. I wouldn't wish it on anybody. It's hard to concentrate," Bussey said.

Some nerves between his ankle and spine won't shut off. They keep going and going and going in a fired-up pain mode - never stopping.

The condition is called reflex sympathetic dystrophy - frequently triggered by a traumatic event to the body for reasons that aren't really understood.

It wrecked Bussey's life.

He can't work. He lives with his parents. He can barely drive, but doesn't want to risk it. He frequently can't fall asleep. He can't even tightly lace up the shoestring on his right tennis shoe.

It's maddening.

He has tried physical therapy, injections into the spine and pain medication. He currently takes 20 to 25 pills of a half dozen prescriptions a day.

Bussey felt alone and guilty because he could tell that others looked at him funny, wondering what in the hell he was complaining about.

Last year, an orthopedic surgeon referred him to the Northwest Spine & Pain Center in Kalispell.

About six months ago, the center provided Bussey with a handheld spinal stimulator that he can hold up to a electronic receiver in his lower back. It can decrease the pain when it gets too intense.

The clinic also supplied him with cautious hope - and the realization he was not alone.

Bussey's goal: Get well enough that he can work again.

Dr. Keith Lara used to be an emergency-room doctor.

The pace was wham-bam-bam-bam.

Stop the bleeding. Stabilize the injuries. Save the lives. Move on to the next patient.

Quick thinking and sure hands counted. Empathy and touchy-feely stuff took a back seat.

Then the 57-year-old doctor ended up in a plane wreck.

Nerve damage turned his right thumb numb and permanently stiffened a couple of fingers. Lara couldn't work effectively in an emergency room any more.

And his hand hurt really badly for a long time - something that rocked Lara out of his world and into the world of chronic pain medicine. He took pain medication and went through physical therapy.

His new world included leaving emergency medicine and joining the Northwest Spine & Pain Center several months ago.

It's a world where he stays with individual patients for many months, instead of saying hello and good-bye in one shift.

Patience became more important than speed. Symptoms and causes became fuzzier. Answers were no longer black-and-white.

Dr. Pam Roberts is one of the physicians at the Northwest Spine & Pain Center.

Roberts, 54, is a family physician who began noticing in 1987 that many women patients had chronic pain symptoms - nonstop tension and headaches - and would not talk about them.

She became fascinated with the subject and explored it, gradually focusing more of her practice on it, moving 18 months ago to the Northwest Spine & Pain Center.

In the human body, pain is a warning system that something is wrong.

Chronic pain means the hurting won't go away after a typical healing period - frequently for reasons that are difficult to find.

Much about chronic pain is a puzzle.

Consequently, chronic pain patients often go from doctor to doctor - searching for answers, or even someone who understands what they are going through, Roberts said.

One result is that patients often end up at the Northwest Spine & Pain Center a long time after their symptoms first appear. The center has worked on speeding up referrals to it.

Until recent years, drugs were the standard procedure to deal with chronic pain.

Now, treatments for chronic pain have branched into combinations of medicine and psychology.

"We have to be holistic in approaching pain," Roberts said. "We are emotional, physical and spiritual beings, and can't really separate that."

Besides doctors and nurses, the Northwest Spine & Pain Center also has a psychologist and social workers.

The psychological aspects need to be treated as aggressively as the medical factors, said David Segerstrom, a licensed clinical social worker at the center.

There are several psychological relaxation techniques - which mostly create mental vacations from pain, taking the mind somewhere else.

Attitude adjustments frequently are needed: learning patience, accepting pain's impacts, knowing that a lifestyle might have to change, and new yardsticks of measuring self-worth might be needed.

No silver bullets exist.

Clear-cut remedies are rare. Mental, physical and medical cures must be mixed and matched. Improvements can take months and years.

"You just chisel away at it," Lara said.

Roberts said: "If they can think of something other than their pain, then we're winning the battle."

Cari Weaverling feels that very few understand what she is going through.

An auto accident hurt her back 14 years ago when she was 17. She had surgery.

And Weaverling, 31, developed fibromyalgia.

Fibromyalgia is a puzzling ailment. No one knows what causes it. Sometimes, the cause could be genetic. Sometimes, a trauma - such as a traffic accident - can trigger it.

Symptoms are widespread chronic pain, ultra-sensitivity to even light touching, and fatigue that sometimes sleep cannot remove.

The American College of Rheumatology says fibromyalgia affects 2 to 4 percent of the population, mostly women.

Roberts was diagnosed with fibromyalgia in 1994. Roberts also suffers from rheumatoid arthritis, an immune disorder that causes a burning pain in joints, and osteoarthritis, which causes moving joints to hurt - all which increased her interest in and empathy for chronic pain patients.

Weaverling constantly hurts all over - some days worse than others. The strongest stabbing pain moves about her body. On the 1-to-10 scale, the pain can range from a 3 to a 10. Doing things is exhausting. Weaverling always is tired.

"Emotionally, it's draining," said the wife and mother of two boys, ages 6 and 7.

"People say they understand. They don't understand. I can't go out and play with my kids, just kick a ball with my kids. It's heart-wrenching," she said.

Weaverling exercises and goes to physical therapy. She takes pain pills, fretting that others will see something wrong with that.

She always wears a fentanyl patch on her body, routinely moving it from one part to another. Fentanyl is a pain-killing drug that enters the body and then the bloodstream.

Weaverling's family moved from Oregon to Evergreen last year, which is when she hooked up with the Northwest Spine & Pain Center.

"They treated me like a human. I wasn't some sort of drug addict. They realized what was happening to me," Weaverling said.

Like Bussey, Weaverling is very cautiously optimistic.

"My ultimate goal is not to be on meds for the rest of my life," she said.

"Chronic pain has a stigma to it because people don't believe it's real," said Dr. Tristan Sophia, the center's psychologist.

Common perceptions of pain are that it will go away, Sophia and Segerstrom said.

The socially acceptable way to deal with pain is to gut it out without much help and without whining. "You're expected to 'cowboy up,'" Segerstrom said.

Chronic pain patients often feel ashamed, isolated with gloomy moods, low energy and poor appetite.

Depression is common, Sophia said.

"They feel they're not being listened to. They feel they're not being believed. There's incredible frustration there. … Everything is affected. They can't think of anything in life but pain," Sophia said.

However, Sophia is aware of only one patient who has apparently given up on getting better. The rest don't expect miracles, but they cling to hope.

Sophia said: "The human spirit is amazing."

An anti-depressant, Cymbalta, recently has neutralized much of the chronic pain that Bill Ludwig endured for about 20 years.

Ludwig, 77, the retired principal of Trinity Lutheran School in Kalispell, has been a diabetic for 40 years.

Twenty years ago, diabetic neuropathy hit Ludwig.

Roughly once a week, intense hammering and throbbing pain would hit the nerves of one of his ankles and feet - alternating between legs.

Each attack would last roughly 24 hours. During an attack, Ludwig couldn't sleep at night. During the day when he was a principal, an attack would lay him up in his office. He and the staff just worked around the attacks.

"You're in such pain, you can't even hold a conversation," Ludwig said.

Nothing but 24 hours of time could stop each attack.

Ludwig and his wife loved to travel - especially to ancient historical sites in Europe, Israel and Syria. The diabetic neuropathy hampered those trips.

"I've been praying for decades: 'Lord, let them come up with something,'" he said.

Then researchers found that the anti-depressant Cymbalta can neutralize pain from diabetic neuropathy.

Ludwig began taking Cymbalta last December.

He still gets an occasional intense pain attack - only now several weeks separate each bout.

"When I went seven weeks without pain, it was paradise."

Reporter John Stang may be reached at 758-4429 or by e-mail at jstang@dailyinterlake.com

Welcome to the discussion.

8 comments:

  • MTMama

    MTMama Posts: 0

    EXPECTANT: I thought of you today when I was reading this article. A gentleman needs a transplant but is being denied a spot on the transplant list due to illicit drug use--medical marijuana.

     
  • MTMama

    MTMama Posts: 0

    There was a link in my post, but it's gone. just google and today's article will come up a few other ones on my 2nd pg that were pretty good.

     
  • MTMama

    MTMama Posts: 0

    Expectant, believe me, those of us who suffer with chronic pain know of medical marijuana. The problem is, not all employers support the idea and can/do fire employees for use. That's just a drop in the bucket of the whole MM mess. Some people are lucky since they can use it and don't have to worry about testing. The interesting thing about MM it does not take much to get relief. A fellow pain sufferer was bedridden by his pain. He takes 4-6 puffs a week and has the pain knocked down a few levels. At least now he can leave his house. He's gone back to college and is working on a science degree. My mom's oncologist also put her on it and it's helping her.

     
  • photoguy

    photoguy Posts: 26

    grasshopper, yes, pain is an indication something is wrong, the problem is, it is not always possible to fix that something that is wrong! Hence these types of services can be a very effective way for people to live a more normal life, pain management is such a wide and diverse situation, due the many variables, it is good to see Doctors take it serious and work to the goal of allowing management of it for people.

     
  • Mrsstorr

    Mrsstorr Posts: 0

    My mom has fibromyalgia and it is not a joke. She is only 48 years old, but might as well be in her late 60's. She used to be very active and always on the go until she was the victim of two car accidents. She uses both medical and homiopathic treatements, gets massages, acuptucture and is taking an array of vitamins and medicines, including a morphine patch. Yet she can barely function through her pain every day. Worst of all is the depression it has caused her. Because she is unable to do very much she has gained a lot of weight which hurts her self-esteem. Plus she has two grandchildren that she cannot play with or pick up and that breaks her heart. With everything medical science can do I cannot believe there are not more treatments for this awful disease.

     
  • mtboat

    mtboat Posts: 3

    I came away from this appreciating life a little more. I have broken nearly everything that can break, and realise now that I 'm not too bad off. There are people in pain far beyond mine.....and that pains me.

     
  • jojo

    jojo Posts: 0

    My husband suffers from a chronic condition which his doctor feels would make him a good candidate for medical marajuana, but because of the FEDERAL position against it, doctors are very cautious in perscribing it. As a result, it is only percribed in the most severe cases. This is not so in CA or other states where Medical Marajuana has been legalized. If anyone has more knowledge on this subject, please let us know.

     
  • Cody

    Cody Posts: 1

    kdjaf

     
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