The Challenge Of Living With Chronic Pain

My local newspaper interviewed me about what it's like to live with pain.  This article came out on August 6th, 2008:  It was a huge feature article taking up one whole page! I thought they did a really good job altogether. The editor did make a few mistakes, but we'll have to live with them lol So without further ado, here it is!

Here's the first mistake: next to the photo above it says:
"Cindy sits at her computer, reading posts in http://www.fresh-hope.com, the private pain forum she started online. The forum allows people with chronic pain to speak with others about what they are all going through."
Obviously FH is not just for people who live with pain, only one of the forums is for that.

 The Challenge Of Living With Chronic Pain
New Ipswich woman says internet has become a lifeline for those who are suffering

By Sam Bonacci
Monadnock Ledger-Transcript Staff

Cindy has been living with chronic back pain for 8 years. The 52 year old New Ipswich resident found herself with the never ending pain after an on the job injury damaged disks in her back. Cindy has gone through more medicines than she can recall, numerous surgeries, and much physical therapy. But nothing has taken away the pain.

"It never occurred to me that I wouldn't be fixed", she says.

Cindy has fought for years to find a way to get rid of the pain, until it was made clear by a doctor that this was her new life.

"I'll never forget him saying, "you're done, you'll never work again the rest of your life" The words literally rang in my head and I didn't hear anything else he said."

Cindy has learned to live with the pain that has changed her life. Unable to work, a good day has become one with less pain, not none. The act of getting up in the morning and getting dressed takes determination.

"A good day is one where I only have to use my morphine a few times," says Cindy.

Chronic pain can be very difficult to understand. It differs greatly from the acute pain of an injury such as a broken bone, and can linger for years, even for the rest of a person's life. It's called chronic pain for a reason," says Dr PK Suchdev, the president of Pain Solutions, a practice that deals specifically with treating pain and has an office at the Monadnock Community Hospital. We look at it in many ways like you would look at diabetes and blood pressure...we can control it, but sometimes eliminating it may be an unrealistic expectation."

Chronic pain is defined as any pain lasting more than 3 months. Chronic pain will be experienced by 50% of Americans in the lifetime, he said. People that suffer from chronic pain should not feel they are alone", says Suchdev.

Cindy's pain starts even before she wakes up in the morning. Getting out of bed can be a trying experience that takes her hours.
(another mistake--it doesn't actually take hours lol it just seems like it!)
She cannot work and is limited in the amount of time she can spend away from her home. Everything she does in a day is a matter of gauging how much pain it will cause, and how that will affect the rest of her day and the next. Being at home with chronic pain is nothing like when a healthy person stays home when they are sick.

"My life revolves around pain," says Cindy, adding that just getting dressed is a chore. "The rest of my day is planned around my pain".

It is not just her daily life that the pain affects. Cindy has never been healthy enough to play with any of her grandchildren. They have always had to grow up being told to be careful around her.

(note by me: another mistake: that's not true. I DO play with them, but it's quiet play not running or jumping, somersaults, or rough housing or anything active at all.)

Chronic pain can be caused by a number of things, says Suchdev. It varies from instances where the body is giving misinformation such as phantom limbs in amputees, or where a physical injury such as multiple back injuries, scars, or surgeries, continues to cause pain. Chronic pain can also be related to injuries severe enough that they are not treatable", says Suchdev.

Cindy has gone through a number of treatments, but none of them fully relieved the pain. Even the narcotics she is on now merely dull the pain.

"They relieve the pain to the point where you can deal with it", she says. There are numerous ways that chronic pain can be treated, says Suchdev. Painkillers can be injected. Surgery can be done to burn the lesion specific nerves that provide the pain. Doctors can also implant various devices that can be used to inject relief into the source of the pain. The simplest example would be to place a steroid medication into areas of the spine to reduce swelling," says Suchdev. "Pain is very complex and that is why it has to be treated in a very complex and multidisciplinary manner."

Pain does not only affect the body, but also the mind, he says. There can be problems with family and friends, and there are instances of depression in chronic pain patients.

 caption under second photo reads:
Cindy sits in her kitchen in the house in which she spends most of her days. Although she has put on a smile, she says people living with pain must make a conscious decision to continue smiling and not be gloomy all the time.

Cindy said that although it can be difficult to be happy, it is necessary. "People expect us to be gloomy", she says. "you can afford to be gloomy and down in the dumps for a week , and let people know you don't feel good. But when you are like this for years, that's a choice you have to make. You have to choose what kind of face you are going to put on it. Those of us who learn to live with it, successfully anyway, choose to smile and it actually helps us too, because you feel better when you smile".

The pain and the new lifestyle can create a rift between people with chronic pain and those they used to spend time with. Eventually, people start to come around less often and friends lose touch, says Cindy. "I don't blame them because they're busy just like I used to be," she says.

There's also a stigma that comes along with chronic pain, she says. Some people think that people with pain are drug addicts or may be faking it. People with chronic pain often do not look sick, Cindy says. Someone she knows has even been accosted for using a handicapped parking permits, while others have heard comments while they walk by holding their cane. They may not need it when they walk into a store, said Cindy, but after walking around they will be hurting and relying heavily upon the cane as they come out.

"We want understanding, not pity," says Cindy. "We try not to let it show. We don't want to be different".

Cindy has found solace in an online forum she started at http://www.fresh-hope.com. Through this private forum, she and other people suffering through pain can speak openly about their lives. Cindy says many forum members reveal sides of their life that they may not show even their closest loved ones.
 
"The internet has become a lifeline for lots of us because we are stuck at home, " she says. "The people on fresh-hope are like family to me".

Chronic pain is not just a concern of the patients and their families and friends. The cost of treating chronic pain, says Suchdev is more then the cost of treating AIDS, cancer and heart disease combined. "It's an incredibly expensive and large epidemic in the country, so there's a lot of research being devoted to the treatment of chronic pain,"he says. "Ten or 15 years ago I could have only imagined some of the treatments we have now." The latest research is exploring the connection with phantom limb syndrome.

But Cindy has stopped looking for the next new treatment, although she continues trying different medications and will be returning to physical therapy. She will continue dealing with her pain as she has for the last 8 years, through the support of her family and friends both online and in person. She will carry on with her routine, taking the bad and continuing to live for the good.

"Finally your body will give you a break, only if it's just for an hour. You learn to kind of live for that hour's relief" says Cindy. It's strange. It's a very different way of life.