Joint Pain

CRIME almost always causes pain. But what about pain that causes crime?
It’s Wednesday, April 22, 2009 and Colin Lindner, 59, is standing before the law in the Magistrates Court at Mount Barker.

The former motor mechanic hasn’t been reckless behind the wheel, hasn’t robbed a bank or raised a hand in anger. But still, he is a law-breaker.

Now Lindner is standing before Magistrate Clynt Johansen in terrible pain, something he endures each day. It’s the pain of fibromyalgia.

The condition has no obvious symptoms, but today, Johansen can see it.

“He had trouble standing up straight, and looking at his face, it was drawn, he was ashen-faced and he was obviously in pain,” Johansen recalls.

But feeling pain is not a crime. Lindner’s offence was that he went looking for relief, and found it in marijuana.  
A DOZEN years ago, Colin Lindner was living what he describes as “just a normal Australian life”. A mechanic, he’d fixed buses for Greyhound Pioneer before setting up an auto repairs workshop at home.
Home is the hilly 33ha farm at Balhannah at the end of Lindners Road - named for his father, who bought the place for a song in 1936.

When he wasn’t stripping engines or replacing clutch plates, Lindner spent time on his favourite hobbies - fishing and music. He played guitar and synthesizer in a local cabaret band.
“Look, my life was just no different than any Australian life,” Lindner, now 60, says.

He’s sitting in his yard, shirtless in the Saturday sun, smoking cigarettes and drinking milk from a coffee mug.

Cows are swishing their tails on a nearby hill and a blue heeler called Jake is yapping madly. “I had a job ... I could do my hobbies, whatever I wanted to do.”
But around 1998, life took a turn that would change all that. It started at work.

“I noticed that, using my hands, my muscles would become really painful when I was stressing them out, you know, especially taking out gearboxes and doing clutch replacements or engine rebuilds or whatever. I just thought it was just a part of pushing yourself a bit hard.”
He also knew that probably wasn’t true. This pain was different. And it wouldn’t go away.

When tests by local GPs could find no cause, he was referred to pain specialist Dr John Graham, who ran more tests and came to the same dead end.
In the meantime, Lindner’s condition was worsening, the intensity of it - “an aching throbbing pain that drives you virtually insane” - so bad he began withdrawing from life, work, his music.

“I just had to pull the plug and say to the guys in the band, ‘look, I’m stretching things here, I mean, I’m using alcohol and I’m drinking excess amounts of alcohol to combat the pain’.
And you’re virtually nearly pissed, just to turn around and perform in front of the public, so I retired from that in 2000.”
In 2003, Lindner was referred to an Adelaide rheumatologist, who eventually gave his mystery ailment a name - fibromyalgia. “I said ‘what the hell’s that? Never heard of it’.”
Most people haven’t. It is a chronic, multi-system illness causing all-over muscle pain, fatigue and disturbed sleep. It is estimated between two and 10 per cent of people have the condition, which can also cause anxiety, depressed mood and joint stiffness. The pain is usually aggravated by physical activity.
The condition can range from mild - where sufferers can live mostly normal lives but a few flights of stairs can seem an insurmountable challenge - to severe, where sufferers are totally incapacitated or bed-ridden, particularly when the condition overlaps with chronic fatigue syndrome.
It can come in extreme forms. Frances Bremer, wife of former US ambassador to Iraq, Paul Bremer, was reportedly in such agonizing pain from fibromyalgia she couldn’t bear to touch the jagged edges of a brown paper bag.

“My clothes began to hurt,” she said. “I would lie in bed and then change from one nightgown to another. It was like my blood was on fire.”
Lindner is grateful his pain isn’t so bad, but his condition is still severe. In the years following the onset, Lindner was forced to close his business and ended up on sickness benefits. Like many sufferers, he found himself on a not-so-merry-go-round of doctors’ appointments, medications and alternative therapies.
One drug worked when nothing else would - OxyContin, an opioid derived from opium, like morphine. Lindner currently takes up to 200mg a day and says he would be “stuffed” without it. “I couldn’t handle the pain,” he admits.
“Just say, for instance, I wanted to mow the lawn, I have to abuse the morphine because the moment I start doing any physical exercise it inflames the muscles. And unless you’ve got enough morphine in your blood stream ... you’ll burst out in about seven out of 10 pain. You’ve just got to hit it with morphine until it backs off.”
Relief comes at a cost. The drug, he says, has a list of side effects “as long as your arm”. He suffers constipation and dehydration and the medication has rotted through all his teeth, top and bottom.
Around 2000, someone suggested cannabis to relieve his pain and keep his opioid intake down. He started growing it. Lindner was smoking the weed regularly when the authorities picked up the scent. On April 19, 2007 they came knocking with a warrant.
By the time they left, they’d recovered three cannabis plants growing hydroponically in Lindner’s house, four plants growing hydroponically in his shed and 12 plants growing in pots in the yard. They also found 1.5kg of dried cannabis in bags.
Prosecutors initially charged Lindner with possession of cannabis for sale or supply. The charge was dropped. “I was doing it for my own purpose,” Lindner insists.
But the law’s the law. And that’s why, on April 22, 2009, Colin Lindner stood in Mount Barker Magistrates court, pleaded guilty to his crimes and waited for Magistrate Johansen to throw the book at him.
But when Johansen looked at Lindner’s face he saw pain, not a criminal. His remarks were measured, even sympathetic. They were also somewhat unguarded, and were picked up by a reporter from the local paper who was in court on the day.
“I think it is fair to say at your age you are unlikely to develop a psychological or psychiatric illness as a result of smoking cannabis,” he said. “You do use cannabis and obviously obtain pain relief from using it. You need medication for your pain.”
He went on.
 “I think Parliament might need to grasp the nettle and make a decision about the use of this type of drug for people in your very difficult situation with pain management difficulties. It is not necessarily only those suffering from this illness but others suffering various types of cancer where they are in constant and sometimes overwhelming pain.
“I say nothing about young people who use this drug for their own personal gratification. My comments are restricted to people with pain management issues.”
But they would not be restricted to the walls of Mount Barker’s Magistrates Court. The story made the local paper and the TV news and went all the way to the office of the former Attorney-General Michael Atkinson.
Legalize marijuana?
Come off the grass, Mr Atkinson told the ABC. “We are not going to allow our anti-drugs system to be breached in this way because once the breach was opened up for so-called medicinal cannabis, it will just lead to cannabis for everyone,” he said.

“Today’s cannabis grown under hydroponic conditions ... blows your brains and causes mental illness.”
No arguments here, Magistrate Johansen tells saweekend, adding he stands by his remarks “even more so” in light of their public airing.
“This more modern cannabis is addictive. It’s also an introductory drug to the harder drugs. That’s all scientific evidence. But where you’ve got someone facing imminent death, through cancer, through any other type of illness or severe on-going pain management issues, I say forget the science, give them the pain relief they need. I mean, isn’t that the human way to do things?”
He’s not alone in his view. So-called medical marijuana is legally available in some European countries and Israel. It is legal in 14 US states, most notably Colorado.

The state capital Denver, with a population smaller than Adelaide, has reportedly become the “cannabis capital” of America, with more “pot shops” than Starbucks, state schools and liquor shops.
In Australia, cannabis remains illegal, although doctors here have acknowledged the potential benefits, while at the same time cautioning about the risks.In 2006, the Australian Medical Association said it considered cannabis “may be of benefit” in HIV and cancer-related wasting and in nausea and vomiting in people undergoing chemotherapy.
But the association said more research was needed to determine the medical benefit of cannabis in neurological disorders such as multiple sclerosis and in “pain unrelieved by conventional treatments”.

Cannabis is thought to have an effect on pain because of the presence of the chemical THC - one of a number of “cannabinoids” in the drug.
“We know now in the spinal cord there are receptors called cannabinoid receptors, marijuana receptors, which down regulate the activity of the pain system,” North Adelaide rheumatologist Dr Richard Kwiatek explains, neither advocating nor condemning the drug.

“So there’s a solid rational scientific basis for why it might work, at least in a proportion of people.”
Some experts say smoking is the most efficient way to deliver THC to the body. But it’s also a harmful one, which is one of the reasons medical pot has been so controversial.

A number of legal, “synthetic” forms have been available for several years and in January there was news of a push by the Royal Melbourne Hospital’s neurology department to trial a liquid marijuana-based mouth spray for the symptoms of MS.
Magistrate Johansen says people in chronic pain should have the freedom to choose cannabis. “In my view, they are people that need some help, they are not criminals. I reflect my sympathetic view in the penalty I impose.”
But sympathy can only soothe so much. When Colin Lindner left the court in 2009, he still had fibromyalgia. He had a black mark against his name, too, and one less method to manage his pain.
Like other chronic, unexplained conditions, fibromyalgia has baffled the best medical brains for decades. The term, which translates as fibrous muscle tissue pain, was coined in 1976 but describes a condition that may have been around for hundreds or thousands of years. Some claim it was described in the Bible and that Charles Darwin and Florence Nightingale were sufferers.
What baffles experts most is the absence of any “organic” cause. Researchers have looked to genetics, viral infection, abnormalities in growth hormones and brain chemicals and physical and emotional trauma as possible triggers - but have found no universal cause.
As a result, the condition has struggled to gain legitimacy and snake-oil salesmen have found a niche with dozens of “miracle cures” on the internet. For years many patients were told the cause of their pain was purely psychological.
But thanks to the efforts of experts like Dr Kwiatek, there has been a shift in thinking towards more rigorous, evidence-based approaches.
“There’s no dispute these people are feeling pain, they’re not making it up,” Dr Kwiatek says. “The dispute is why have they got this pain?”
He has spent more than 20 years trying to find out. In the late 1990s, he led a team at the Queen Elizabeth Hospital that found reduced blood flow in the thalamus and brain stems of women with fibromyalgia.

The results, which excited researchers around the world when they were published internationally in 2000, confirmed previous studies into reduced blood flow in the thalamus.
But the discovery of reduced blood flow to the brain stem, which connects the brain to the spinal cord, was significant and unexpected.

The findings pointed to “under-active” nerve cells in areas where blood flow was reduced. It was valuable proof of some real, physiological defect in sufferers, but vital questions remained.
Was the reduced blood flow a cause, or the response of the chronic pain?
A decade later Dr Kwiatek can answer with some certainty.
“We think the blood flow is reactive of changes of how the brain works; it’s not the cause of the changes, it’s reactive to it.” 
Now, studies are suggesting the cause may lie in glitches which cause sufferers to become “hyper-sensitized”.
Within the body’s nervous system, pain messages are being amplified, like a radio’s volume being turned up. At the same time, some stimuli to the body are being misinterpreted as pain. Sufferers can feel like they would if they’d put their hand over a flame or banged their thumb - even when there’s no fire or hammer.
Dr Kwiatek calls the whole painful scenario a “very intriguing set-up” of the way the circuitry of the central nervous system works. Intriguing, and for now, still a mystery.

“To deal with this group of disorders one has to be comfortable with dealing with uncertainty, medically. It’s not black and white. Unfortunately some of my colleagues have trouble dealing with that.”
JENNY Faulkner will always be grateful Dr Kwiatek has had no such trouble. The Ingle Farm woman has suffered with the condition for more than 20 years and says he saved her life, although he didn’t know it then.
“I was quite suicidal after a work injury because no-one understood what was happening,” she says. “I didn’t ever have a death wish, I never wanted to die, I just didn’t know how to cope with it.”
In the early 1990s, Dr Kwiatek ran an information session through the Arthritis Foundation of SA. Faulkner, overwhelmed by pain and fatigue, saw the ad and went.

“From that day, for me, the lights went on because they began to show me that I wasn’t crazy. I’d been on a medical merry-go-round, 30, 40 different practitioners all saying ‘you’re more healthy than I am’. It had undermined the very foundation of who I was; if this wasn’t real, if you couldn’t have this, what was happening? Was I crazy?”
Faulkner was empowered. She learned to manage her symptoms and began to turn her life around. She got involved with the foundation, helped set up support groups and even wrote her own literature for GPs and sufferers.

“I began to present it and as I presented it, hundreds of people would come,” she says. “As I began to see people around the systems, I realized my story was their story”.
Much of Faulkner’s efforts have been to have fibromyalgia recognized as a multi-system illness, requiring a holistic treatment plan, as with diabetes.

She now works with community organizations as a life skills educator helping sufferers monitor their sleep, diet, medication, work and study habits.
“If I said I had diabetes, people would give me a care plan, they would work with me. Managing any chronic condition is actually the same, 90 per cent of the time.”

She has also been working to combat the blunt prognoses sufferers, particularly the young, are often handed in doctor’s surgeries. She calls it hope.

“You have to give people hope. The negative health message is always ‘you have fibromyalgia. You just go home and you live with it.’ If you don’t know what you’re living with, you can’t live it.’’
TWO years ago, Pamela James of Oakden came to the same conclusion. Then 21, she had been suffering from the condition from the age of 13. 
“I got really bad and I started getting really depressed and I got to a point where I was suicidal,” she says. Like Faulkner, she didn’t want to die, she just didn’t know how to cope with the pain.

“I’m better now. I’ve been seeing a psychologist.” James believes her condition may have been triggered by a traumatic experience as a child.

At 10 she suffered chronic migraines and was “sick all the time” with colds and flu. “Then all of a sudden, in Year 8, I started getting really sick, I had trouble walking stairs and I changed schools,” she says. “In Year 9, I started collapsing all the time and it got to the point where I couldn’t walk.
“It was scary and I basically just dropped off the face of the earth, I didn’t see any of my friends, I was just pretty much in bed for nine months. No-one knew why I left school and no-one knew that I was sick. It wrecked my whole life – everything just collapsed around me.”
James managed to finish Year 12 through an open access college and is now at university. She describes her pain as “stiffness, soreness, aching, burning” and was recently diagnosed with chronic fatigue syndrome which means she needs rest during the day.  
“It stops me from doing a lot of things like housework and going to uni; like I’m at uni but I struggle. And going out with friends and stuff, it stops me doing a lot of that as well because I just get too tired to even talk on the phone.”
But life goes on and James is determined to live it. She has reconnected with old friends through Facebook and complements her pain medication with regular physio- and hydrotherapy.
“Every day is different. But I’ve been pretty good. I’ve got some really supportive friends around me and a supportive boyfriend and it’s easier now. But when I get severe days, and I may have four severe days in a row, by that fourth day, I’ve had enough. And I’ll be teary and I’ll get depressed. But then I just try to think well, at least I’m still alive."
COLIN Lindner faces each painful day with the same determined will to carry on. But it is a worried life. With the pain of his condition and age against him, managing the basics is becoming increasingly difficult. He fears he is “on the doorstep” of constant care.

“But I don’t want constant care,” he insists. “I like my own independence, everybody does.” Yet that independence is already much compromised.

“Gone are the days where you’d plan ahead to do certain things. You can’t because you don’t know what you’re like until you get up the next day. I’ve just got to play it day by day.”
Jake the blue heeler is still yapping like crazy. “Jake, don’t lose the plot. It’s too early yet.”
If you’re suffering from depression and need someone to talk to, call Lifeline Australia on 131114; For more information about Fibromyalgia, contact the Southern Chronic Illness Links Network.
You can read comments on this story at AdelaideNow