For some of the roughly 76.5 million Americans suffering from chronic pain, this is their reality. Pain that may subside but never goes away.
Danville resident Mark Maginn understands this reality. The 59-year-old resident has suffered chronic pain for more than 35 years and is a spokesman for the American Pain Foundation.
"Chronic pain affects more people than diabetes, cancer and heart disease combined," he said. "More than a quarter of Americans age 20 or older are affected by chronic pain of some sort."
Maginn was working as a therapist in Chicago when his long road of chronic pain began. "I was in my 20s and started having pain in disparate parts of my body. Different doctors suggested different diagnoses. This went on for 15 years."
Maginn's case is not the exception. When it comes to chronic pain, it is rare for an immediate cause to be pinned down by doctors. This leads to long periods of frustration for those afflicted.
"Many of us kind of wander in the wilderness of doctors without being treated," he said. "Every case is different but the broad facts remain the same. The doctors have to diagnose a pain they can't isolate and find out what's causing it."
Pain became a constant companion to Maginn, sometimes robbing him of his ability to function.
"I was seeing a client in my office in downtown Chicago when I experienced incredible agony in my back," he recalled. "It was so bad that I couldn't get up off the floor. My client showed up and offered to drive me to the hospital but I called my wife and had her take me."
The pain turned out to be caused by a kidney stone, the first of many that Maginn would suffer over the years. He said doctors tried to remove the stone but were unable to and eventually had to use a device called a lithotriptor to remove it. Lithotripsy is a process by which doctors destroy a kidney or gall stone through the use of tightly focused acoustic waves. Maginn was one of the first to receive the treatment in Chicago.
After years of doctor visits and increasing pain throughout his body, Maginn was diagnosed with arthritis and fibromyalgia. He said he and wife Judie were optimistic that this diagnosis would be the one to bring about an end to years of unanswerable pain. Such was not to be.
"We tried lots of different drugs but none of them were able to manage the pain. I was left with the opinion that I was going to have to learn to live with it," he said.
A turning point in understanding what is wrong with his body came in the late '80s when without warning Maginn experienced partial blindness in his left eye. "I lost my lower and left peripheral vision. It doesn't bother me as much as in the beginning, tripping over furniture and things but now I'm used to it." Maginn compensates for the loss of sight by turning his head slightly to bring the upper range of his vision to bear.
While the loss of part of his sight was a blow, it did have a silver lining. "My blindness led to my Behcet's diagnosis."
The additional symptom led Maginn's doctors to the conclusion that the man was suffering from something called Behcet's Syndrome. It is a rare disorder that causes chronic inflammation of the blood vessels throughout the body and is a gateway condition to a host of other signs and symptoms.
It is most commonly found in the Middle East and Asia, but some cases have been reported in the U.S. The disease is incurable, but doctors say it can lessen with time.
The Behcet's diagnosis, while not giving hope of a permanent loss of pain, at least gave the Maginns a chance at better managing the situation. Maginn has had six surgeries over the years to relieve pain in his joints and has tried a variety of drugs and physical therapies. He said there were other drug options but doctors were leery of prescribing them.
"The DEA frowns on doctors treating people with strong opioids due to concerns about addiction," he explained.
The constant aches gnawing away at muscles and joints soon began to consume other parts of his life as well. "Before I started having pain I played a lot of sports. I played tennis, basketball, golf. I lifted weights. I had to give up all sports."
He described one of the final times that he played tennis. "I was playing in this tournament. I stretched for half an hour. Then I got dressed and wrapped both knees up in ace bandages. After that I went in the steam room for about five minutes. I looked like the Bionic Man on the court."
Maginn's therapy practice was next to fall before the onslaught. The experience of sitting for hours at a time affected his ability to focus on his patients. Pain attacks forced him to miss appointments. At first he cut back his hours, but eventually a day came when he was forced to stop. "I had to give up my profession, couldn't do sports. Couldn't go out to dinner with my wife and son. Every facet of my life was under attack by this pain."
In pain, unable to work, limited in how he could be effective in taking care of their home and his son Russell, now 17, Maginn felt himself entering a dark spiral. "I was depressed, irritable, withdrawn. My wife knew I was in pain but there was nothing that could help me."
Maginn credits his wife Judie with being one of two things which helped him stay grounded when the pain was at its worst. "I think about how lucky I am to be married to Judie. That she took that 'in sickness and in health' vow and stuck with it. And me." He added, "It was so hard for her never knowing what she was going to get when the phone rang."
The other thing which saved him was discovering a passion for writing. "We were living in New York and I took a poetry class. I loved it and took a second course. The guy who taught the course started his own poetry group and I was asked to join." Maginn said the process of writing let him organize his "mental life" and focus outside of himself.
He has since written several poems and is currently working on an autobiography that explains the effect of pain on a person's life. It includes anecdotes of his life prior to the introduction of chronic pain and through several experiences, including time he spent serving as a counselor to emergency services workers at ground zero in the days after Sept. 11.
In the last few years, he has seen some improvement in his situation. A new course of drugs has helped tame the constant fire gnawing at his body. "It showed some effects immediately. I'm still in a lot of pain but it takes away the top levels." Now, he said, he can do things he couldn't do for a long time, like shop, go for walks or go to art fairs with his family.
It was this reduction in pain that also prompted him to look at ways he can help others in similar or worse situations than he. "There is a pain spectrum. I'm not anywhere near the extreme end of that spectrum. There are people with rheumatoid arthritis who can't function at all. I'm a relatively high functioning person for someone who is in chronic pain," he said.
This desire to help others led Maginn to the American Pain Foundation, which named him as California leader of the Power over Pain Action Network. The foundation describes the PoP Action Network as a grassroots network of people living with pain, caregivers and healthcare providers who work in collaboration with other advocates to bring the issue to light, and help seek a cure for chronic pain disorders.
Maginn said the goals of the network are to raise awareness, promote the best legislative pain policy possible, and advance national and state-based education over pain issues. "We want to harness the voices of the millions of people affected by chronic pain and make a nationwide movement of pain advocates," he said.
Maginn knows that his situation isn't a stable one. His disease could worsen, the medications could become less effective. But while he can he wants to help bring attention to this disorder affecting one in every four Americans. "I told them (American Pain Foundation) that I was limited in what I could do. The APF said they will take whatever I can do with them."
This story contains 1497 words.
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