The American Chronic Pain Association has issued a list of the basic rights of a chronic pain sufferer. Perhaps one of the most important of them is the right to “do less than you are humanly capable of doing.”

In a culture that celebrates efficiency, maximum productivity, and pushing limits, doing less is a radical concept. But Penney Cowan, executive director of the association, believes it is crucial.

“People with pain tend to be overachievers who don’t listen to what their body is telling them when the pain starts,” says Cowan. “They push themselves until the pain is screaming, instead of stopping when the pain is whimpering.” 

For many, stopping an activity before it’s done may result in a complete reappraisal of how they see themselves.

Andrea Kramer, a back-pain and fibromyalgia sufferer from Montgomery Village, Md., describes herself as “a doer, a pusher, a runner.” But as the reality of her condition set in, she had to adjust to the fact that she “couldn’t do laundry, dishes, lifting, washing a car—it depended upon the level of pain,” says Kramer.

The lurking tendency to overdo it
One problem is that even if pain temporarily sidelines the superachiever, that person’s underlying mindset doesn’t disappear. It just lays low until pain takes a brief vacation. 

Then on a good day the go-getter wants to do as much as possible. “You push, you don’t pace, you overexert,” says Cowan. 

Dan Clauw, MD, director of the Chronic Pain and Fatigue Research Center at the University of Michigan, sees this ebb-and-flow pattern all the time and says it’s not good for pain management. 

“I would suggest that people do the same amount of activity every day so they can even out their peaks and valleys,” says Dr. Clauw. 
Too many bad days in a row can leave a lot undone, making a pain sufferer feel overwhelmed and melancholy. Cowan says chronic pain demands a clear eye for priorities, which is why she suggests that the pain patient make lists. “Set realistic goals for yourself,” she says, “and narrow them down to a point where you’re not going to set yourself up for failure.”

Accepting your limits is critical
Judy, 49, who runs a headache support group in Nashua, N.H., has taken the “right to do less” mantra to heart. But it’s not easy if the price is a less tidy home.

“I’ve lessened expectations on myself over the years,” she explains. “If things don’t get done, they don’t get done. I just can’t get down on myself about them, because it’s a choice between trying to feel well and saying my house has to look absolutely perfect.”

Amanda, 39, a migraine sufferer who attends Judy’s support group, has also learned to pace herself. For example, she cleans early and often, little bits at a time. “My parents are coming in a few weeks, and I’ve already started cleaning because I have no idea how I’m going to feel. So I do things slowly or piecemeal here and there. I’ve learned to work around it.”

People living with chronic pain are often “people pleasers,” according to the American Chronic Pain Association. That means they may dismiss their own needs to assist others, or be hesitant to express their needs and ask that they be met. 

One of the key steps to finding relief and living well is to know your needs and limits and have people meet and respect them. The ACPA acknowledges 15 basic rights to which every pain patient is entitled.

As a person suffering from chronic pain, you have a right to:

1. Act in a way that promotes dignity and self-respect.
2. Be treated with respect.
3. Make mistakes.
4. Do less than you are humanly capable of doing.
5. Change your mind.
6. Ask for what you want.
7. Take time to slow down and think before you act.
8. Ask for information.
9. Ask for help or assistance.
10. Feel good about yourself.
11. Disagree.
12. Not have to explain everything you do and think.
13. Say “no” and not feel guilty.
14. Ask why.
15. Be listened to and taken seriously when expressing your feelings.

(Source: health.com)

Not only can chronic pain feel isolating, sometimes sharing it with friends and family can be worse than keeping it to yourself. Here’s a guide from patients who know about the problems you may encounter with your loved ones and how to handle them.

Help your friends help you

“Chances are your family and friends will react to your pain in one of three ways,” says Jen Singer, 41, a cancer survivor from Kinnelon, N.J. “They’ll want to fix it for you, they’ll wish they didn’t have to know about it, or they’ll want you to suck it up.” 

Singer advises pain sufferers to avoid analyzing friends’ and relatives’ motives and focus on how they can support you. 

“When you’re feeling relatively OK, tell them how you want to be treated when the pain hits,” suggests Singer. “Maybe you want to be left alone. Maybe you need help breathing through it or reaching for your pain meds. They’ll probably be relieved when you let them know—even if you want them to do nothing.”

Understand why it may be difficult for them

Some people just can’t handle a person in pain. “People really don’t want to be around sick people,” says Steven Feinberg, MD, a past president of the American Academy of Pain Medicine. 

“When someone is ill you feel sorry for them. But we’re all busy,” Dr. Feinberg says. “We say we care and things like that but the reality is, except for our immediate family, we don’t want to be reminded of our own mortality.” 

At the same time that friends may be pulling away, you may not have the energy to pull them back. “If you’re in chronic pain, you don’t have the physical strength,” explains Dr. Feinberg. “You’re irritable—and people don’t want to be around you. So you start losing relationships.”

Find ways to work friends in

Shelley Kirkpatrick, 32, of Bellefontaine, Ohio, found that family and friends did stick by her once she helped them understand the limitations that fibromyalgia has put on her socializing. 

“I can’t go with a group of friends to the mall and shop all day anymore,” says Kirkpatrick. “I can’t spend an entire day out in the sunshine on the beach or whatever; I get fatigued.” 

So Kirkpatrick and her friends plan activities around her energy levels. “I may be able to go shopping for half a day instead of a whole day. So we may plan to do shopping in the morning and see a movie in the afternoon, instead of trying to cram everything into one day. We all just kind of work together to get things done.”

If all else fails, be your own best friend

“Many people with chronic pain, myself included, look to others for validation and understanding,” says Rebecca Rengo, 52, a St. Charles, Mo., resident who suffers from several pain conditions, including fibromyalgia, and is the author ofBeyond Chronic Pain. 

“Even people who are very caring and empathetic don’t really know what it’s like, and so instead of wasting time and energy trying to convince other people to understand and validate what you’re doing, give all the support and validation to yourself that you want from other people.”

(Source: health.com)

For people with severe chronic pain like Kelly Young and Teresa Shaffer—both of whom have become patient advocates —coping with agony is a fact of life. Young suffers from rheumatoid arthritis while Shaffer’s pain is linked primarily to another degenerative bone disease.

Chronic pain is one of the most difficult—and common—medical conditions. Estimated to affect 76 million Americans—more than diabetes, cancer and heart disease combined—it accompanies illnesses and injuries ranging from cancer to various forms of arthritis, multiple sclerosis and physical trauma.

Pain is defined as chronic when it persists after an injury or illness has otherwise healed, or when it lasts three months or longer. The experience of pain can vary dramatically, depending in part on whether it is affecting bones, muscles, nerves, joints or skin. Untreated pain can itself become a disease when the brain wrongly signals agony when there is no new injury or discernable other cause. Fibromyalgia— a disease in which pain in joints, muscles and other soft tissues is the primary symptom—is believed to be linked to incorrect signaling in the brain’s pain regions.

Finding a Doctor

The first step to deal with chronic pain is to find a physician or medical team who can accurately diagnose your condition and work with you to lessen pain.

“It’s not easy,” says Shaffer, “You have to find someone [with whom you can] build a relationship of trust and open communication.”

Dr. Russell Portenoy, chairman of pain medicine and palliative care at Beth Israel Medical Center, agrees. “You need to identify someone with a high level of knowledge and competence, good communication skills and a network of professionals with whom they work, someone who has compassion,” he says.

Dr. Paul Christo, director of the multidisciplinary pain fellowship program at Johns Hopkins School of Medicine, also suggests looking for someone who has completed at least a year-long certification in pain management. This information can usually be obtained on the doctor’s website or by asking about his or her qualifications.

Comprehensive Treatment

Experts agree that comprehensive care—which can involve medications, exercise, psychological therapy, massage, physical therapy, injections and complementary treatments, depending on the patient and condition—is essential.

“The reason we now call chronic pain an illness is that we recognize that it is more than just a sensation in the body,” Portenoy says, “It affects your ability to function as a human being, your relationships, your ability to be productive, to think straight.”

Unfortunately, because they have so often been dismissed as having a problem that’s “all in your head,” many people with chronic pain resist considering talk therapy as a part of treatment.

“A lot of people have the misconception that what I’m telling them [when recommending therapy] is that their pain is a figment of their imagination,” Christo says. “That’s not what we mean. Pain has such an emotional component and psychotherapy is extremely useful in terms of helping patients reorganize and rethink how they interpret it and how it affects their lives.”

Says Shaffer, “Pain encompasses the entire person. It’s not just in your leg or back. It encompasses the entire being of who you are and what you can do and don’t do. So physically, mentally psychologically: you have to take care of all of those things.”

The Opioid Question

Although drugs like aspirin, ibuprofen and even some antidepressants can help relieve pain, the most effective medications for most severe pain remain the opioids, likeOxycontin and morphine. Both doctors and patients tend to fear these drugs because of concerns about addiction and overdose.

However, of patients without a prior history of addiction, less than 3 percent of patients who take opioids regularly for pain will become addicted to the drugs, according to a Cochrane review of studies. Opioids are currently under a cloud because of a sharp rise in overdose death and addiction, mostly resulting from misuse by people who aren’t pain patients. The majority of overdoses occur in people who abuse the drugs along with alcohol and depressants like benzodiazepines (for example,Xanax).

Virtually everyone who takes opioids on a daily basis will become physically dependent, however: They will suffer withdrawal if the drugs are not slowly tapered. But that is not the same as addiction, which is defined by craving, negative consequences, reduced ability to function and compulsive drug-related behavior.

Kelly Young avoided opioids for years, relying on high doses of ibuprofen (Advil) and similar drugs. But when the pain became excruciating, her doctor suggested she try anopioid. “I was afraid of side effects,” she says. “One night it was really bad so I took it.” At first, she felt severe dizziness. “But in 30 minutes, the pain started going away and I thought, ‘This is amazing, this is the first time in 4-5 years that I’ve been without pain,’” she says.

To reduce the dizziness, she cut the dose, starting with a liquid usually given to children so that she could find a level that allowed her to be most comfortable. Neither Young nor Shaffer, who also manages her pain with opioids, has ever developed addiction.

Two-Way Trust

Because doctors can lose their licenses or go to prison if they don’t detect addicts who fake pain, patients find themselves in a difficult position when they want to discuss opioid medications. Asking for a drug by name, for example, which might be fine with other conditions, is seen as a “red flag.”

“When you initially go to an appointment, you don’t want to go in there saying I need medication; that’s the worst thing you can do,” Shaffer says. “You want to ask for relief. Explain to the health care provider, ‘This is my life. I can’t get out of bed. I can’t do laundry. I can’t pick up my child. I need quality of life, that’s why I’m here.’”

Shaffer adds, “You have to be upfront and honest and build that relationship of trust with your doctor.”

Shaffer also notes that it is the patients’ responsibility to store opioids in a locked box safely: Many people who abuse and overdose on these medications get them from friends and relatives who do not secure them.

Acceptance and Hope

Shaffer and Young both recommend a mix of realism, mutual support and fighting spirit when it comes to facing pain. Young runs her Rheumatoid Arthritis Warrior website and Shaffer moderates online discussion groups for people in pain at the American Pain Foundation site. Experts agree that support from family, friends and people facing similar problems—so long as there’s some type of social support—is essential.

“You have to accept what your life is going to be, but you don’t have to give up,” says Shaffer, “OK, yes I have pain but that pain doesn’t own me or define who I am today.”