When Heather Grace started Experiencing pain and numbness in her arm and neck she never imagined that she would be living with chronic pain for the rest of her life. As a busy information technology professional, Heather spent countless hours in front of the computer, and it had taken a toll on her body. She visited several doctors and finally was diagnosed with a soft tissue injury and prescribed physical therapy (PT). “I thought that was it,” Heather explains. “I would do PT, and it would get better. Over the next year, it just got worse and worse.”
Heather’s pain intensified; she had numbness and tingling in both arms, and she was dropping things. Her head felt like it would burst. “I thought my pain was bad at the beginning, but I had no idea it could get as bad as it did,” she says. She continued to visit doctor after doctor to no avail. Finally, after more than two years, she got the magnetic resonance imaging (MRI) scan she had been begging for, and it revealed a bulging disc. “I was jumping for joy because I thought, I’m going to be better because they’re going to fix me,” Heather recalls. Unfortunately, insurance complications—Heather’s injury was a workers’ compensation claim—meant that she would have to jump through an endless series of hoops to get the treatment she needed.
“I never dreamed it would take another five years to actually get the surgery,” she says. “It was an unbearable waiting game; and even when my surgery did happen, it was years too late. It only made my pain worse.”
Today, Heather lives with intractable pain—a level of pain that most people cannot even imagine. Left untreated, her original injury led to severe nerve damage that now affects five discs in her spine. She lives with feelings of “fire” and “ice” and is sensitive to just about any change in her environment. “My pain will never go away. I will be dealing with it for the rest of my life,” Heather explains. “Until it happened to me, I didn’t even know it was possible.”
The Pain Epidemic
Heather’s story may sound extreme, but unfortunately it’s not that unusual. In fact, according to a recent report from the Institute of Medicine, chronic pain affects at least 116 million American adults.1 That’s more than the total number of people affected by heart disease, cancer, and diabetes combined. In other words, we have a chronic pain problem.
Chronic pain is a public health crisis. It costs the nation up to $635 billion per year in medical treatment and lost productivity. More importantly, it costs people—116 million of them—quality of life. Heather knows this all too well. “At one point I was actively considering suicide because I couldn’t continue living in constant, unbearable pain for much longer,” she admits.
Indeed, the impact of chronic pain on quality of life is devastating. Dr. Lynn Webster, MD, FACPM, FASAM, medical director of the Lifetree Clinical Research and Pain Clinic, says that when a patient comes to him for the first time, he tries to simply listen for at least 10 to 15 minutes. “I let them say what they have to say, and then I ask what I can do for them,” he explains. “Usually, there is a period of silence and then they say, ‘All I want is to have my life back.’”
Unfortunately, many people suffering from chronic pain cannot “have their life back”; instead they’re faced with a new life that requires them to live with pain.
Most people perceive pain as a symptom, although chronic pain is a disease in and of itself. When pain is properly treated early, many people can recover and resume their lives. Left untreated, pain can result in nerve damage that never heals—leading to chronic pain. “Rarely are we able to eliminate chronic pain,” Dr. Webster says. “There is not a cure.” Instead individuals with chronic pain must learn to change their expectations and the ways in which they live their lives.
Dr. Webster explains that the brain is a key component of the perception of pain. “Pain is literally a matter of perception,” he says. “All pain is influenced by life experiences and by the cognitive and emotional centers of the brain.
“By professional definition, chronic pain is when someone is experiencing pain persistently or intermittently for more than six months,” Dr. Webster continues. He explains that 25 percent of the population is experiencing chronic pain at any given time. Older people— those over age 65—tend to have longer periods of pain and often permanent pain that they live with for the rest of their lives.
Women and Pain
Women experience chronic pain differently than men. They tend to experience more pain than men, have a lower pain threshold, and more often suffer from conditions that cause chronic pain, such as fibromyalgia, irritable bowel syndrome, and migraines.2
The gender differences in pain experience have been extensively studied. Some research indicates that male and female brains process pain differently. For example, PET (positron emission tomography) scans have indicated that women tend to experience pain in the limbic— or emotional—area of the brain, whereas men tend to experience pain in the frontal cortex, or the intellectual processing center.3,4 This could explain why women tend to describe their pain with more emotion while men report it in a more matter-of-fact way.
Hormonal differences may also play a role in how women experience pain. Some studies indicate that estrogen levels appear to affect the experience of pain. Women tend to experience pain sooner and reach their maximum pain threshold sooner during and around menstruation, indicating that a dip in estrogen levels might make women more vulnerable to pain. There is plenty of conflicting literature on the topic, however, and researchers continue to evaluate the connection.2
Although he acknowledges that it is a generalization, Dr. Webster says that too many physicians perceive complaints from women as dramatic and overstated. “Unfortunately, many physicians tend to think women are more histrionic and blame it on social characteristics more than physical characteristics,” he explains. One way to avoid this bias is to report the pain with as little emotion as possible and be careful not to overstate it. “The one thing that discredits people is when a doctor asks them to rate their pain on a scale of 1 to 10 and they say it’s 15,” explains Dr. Webster. “Then you can’t believe what they say. It is by definition histrionic, and it biases the subsequent discussion.”
Communicating with Your Doctor
So, what is the best way to communicate pain to a doctor? Dr. Webster says it’s important to communicate directly and honestly and to provide both a quantitative and a qualitative description of the pain. In other words, women should describe the intensity level of the pain but also information about how the pain has affected their life.
Micke Brown, BSN, RN, director of communications for the American Pain Foundation (APF), has been a registered nurse for more than 30 years and has more than 15 years of experience as a pain management nurse, program coordinator, educator, and advocate. She likes the pain notebook provided by the APF because it helps patients describe their pain accurately. “It’s not just a 1-to-10 pain scale,” she explains. “That tool is designed to manage only one aspect of pain, which is intensity. There is a lot more to pain than intensity. Do you always have pain? Is it worse at different times of day? How does it interfere with your ability to work, be social, or care for your kids?”
This information helps the physician get a better sense of how the pain is affecting an individual’s ability to function—and is important for guiding treatment strategies.
Treating pain is a nuanced, multifaceted process. It typically requires a combination of treatments— referred to as multimodal treatment—that may include physical therapy, biofeedback, cognitive therapy, medication, exercise, spinal manipulation, and more. Most physicians will use some combination of these strategies to create a pain management plan for a patient. In other words, treatment is not a one-size-fits-all approach. “You have to find the right ingredients to build the right recipe for the individual and attack the pain problem with many different strategies,” Brown explains.
Prescription opioids—such as hydrocodone and oxycodone— may be one component of a pain treatment plan, but they are not without controversy. The drugs can be addictive, and many physicians hesitate to prescribe them. Dr. Webster has long been an advocate for safer prescribing and consumption and has written a book titled Avoiding Opioid Abuse while Managing Pain: A Guide for Practitioners. He worries that we have lost the balance in the discussion about opioids because of the focus on abuse and addiction. “We have millions of people who benefit from these medications and whose lives are improved,” he explains. “It is a tragedy for anybody to be harmed by them, but it is also a tragedy if people are not given access to medications so that their lives can be restored.” He says that the majority of people do not need opioids, but they are helpful for some patients.
Unfortunately, there is a stigma associated with pain medication— partly the result of misinformation and imbalanced media coverage. “That is the hardest part,” Heather admits. “You’re facing this serious chronic illness, and everyone looks at you as if you’re a drug addict, a loser, and a liar. The reality is that nobody with chronic pain wants to take these medications or deal with this, but they want to be better.” For those who need them, opioids can make a huge difference in quality of life—helping people transition from suicidal despair to some semblance of “normal” life.
Because chronic pain is its own disease, it helps to seek a practitioner who is well versed in treating it. Unfortunately, chronic pain is not part of the core curriculum in medical education. As a result, many primary care physicians are undereducated in pain.
Not all pain requires a specialist; however, women who don’t find help with their primary physician are encouraged to find a specialist. Dr. Webster suggests interviewing physicians. “They may need to go to several to find someone they can believe in,” he says. “A good physician in this area will be compassionate and will hear the voice of the individual.”
Brown adds that it is important to arrive prepared for that appointment. “The more information you bring with you, the better off you’re going to be,” she says.
To get the most out of an appointment with a physician, it helps to bring:
- A pain log that includes quantitative and qualitative information about the pain
- Medical records
- A history of pain treatment: what has been tried and whether it helped, hurt, or had no impact
Living with Pain
No one with chronic pain wants to hear that they just need to live with it. While the pain may be incurable, there are treatment options that can help improve quality of life. Brown says that it’s important for women to be active partners in their care. “It’s a mixture of medication management, lifestyle, movement, diet, and more,” she advises. “You may have to change how you do things, but you can’t let the pain drive your life. You have to drive your life instead.”
Heather knows this firsthand. She can’t do many of the things she used to do, but she has found strategies for coping with the pain. She has good days and bad days. Sometimes she sleeps and sometimes she doesn’t. On some days she experiences debilitating pain flares. Most importantly, she spends a lot of time advocating for the rights of people with pain by serving as a volunteer Action Network leader for the American Pain Foundation in California. “If I’m going to spend the rest of my life in pain, the least I can do is help people,” she says. “I don’t want anyone to kill themselves because they can’t get the treatment they need. I was at that crossroads.”
Chronic Pain Resources
The following organizations provide education, support, and other resources for individuals suffering from chronic pain:
How to Talk to Your Doctor About Your Pain
- Be direct, honest, and as unemotional as possible.
- Provide a quantitative description of the pain. For example: “On a scale of 1 to 10, it’s a level 8; and I can’t sleep more than three hours at a time.”
- Provide a qualitative description of the pain. For example: “I can’t deal with my kids without yelling at them. I feel alienated by friends and family. I can no longer do the things I love to do.”
- Ask for strategies for coping with the pain. Most chronic pain is incurable, so it’s better to say: “I need to be able to better deal with my pain” rather than “I want my pain to go away.”
When Someone You Love Is in Pain
It can be hard to understand chronic pain if you haven’t experienced it yourself, but this lack of understanding often exacerbates the pain people are feeling. “When you talk to someone and they don’t understand, it’s devastating,” explains Heather Grace. She says it’s important to provide emotional support to someone in pain. “Just remember that they were your family member, friend, or co-worker long before they had pain, and you knew them and trusted them. So, don’t change your mind about that just because you don’t understand their pain.”
Simla Somturk Wickless, MBA, CHC, CNE, is a holistic health coach and a therapeutic nutritionist who survived debilitating chronic pain and fatigue to successfully overcome fibromyalgia and other chronic health conditions. Today she guides her clients worldwide toward health. If someone you love is in pain, she suggests the following:
Listen. There is nothing you can do to change the pain, but you can help your loved one feel truly heard.
Believe Them. There is a stigma associated with pain, and often people in pain are viewed as dramatic or, worse, liars. It is rare for people to fake chronic pain. If they say they are in pain, they likely are.
Ask Questions. Ask your loved one to rate the pain and describe its impact. Ask him or her to describe the diagnosed condition and then research it more on your own. This will help both of you gain a better understanding of the pain—and each other.
Offer Assistance. Ask how—not if—you can help. And if the answer is “No, thanks,” just be good company.
Have Compassion. It can be unbearable to live with chronic pain—and even worse to feel judged for it. Empathy, kindness, and compassion can help ease suffering and build a bridge of understanding.
Bring Humor and Optimism. Focus conversations on positive topics the person enjoys. Laughter can take one’s mind off the pain and even serve as a temporary painkiller.
Be Respectful of The Unique Situation. Do not push solutions on your loved one just because “it worked for so-and-so.”
Be Understanding. Realize that his or her moods may be affected by the pain, and don’t take sour moods personally.
Show Your Unconditional Love. Simple acts of kindness and love go a long way. Bring flowers or a homemade dish, offer to pick up some groceries or a good book, or give a welcome gift, such as a house-cleaning service gift certificate. Above all, just demonstrate love.
1.Relieving Pain in America: A Blueprint for Transforming, Prevention, Care, Education, and Research. Institute of Medicine of the National Academies website. Available at: http://www.iom.edu/Reports/2011/Relieving-Pain-in-America-A-Blueprint-for-Transforming-Prevention-Care-Education-Research.aspx. Accessed September 22, 2011.
2.Fillingim RB, King CD, Ribeiro-Dasilva MC, Rahim-Williams B, Riley JL 3rd. Sex, gender, and pain: a review of recent clinical and experimental findings. Journal of Pain. 2009;10(5):447-85.
3.Paulson PE, Minoshima S, Morrow TJ, Casey KL. Gender differences in pain perception and patterns of cerebral activation during noxious heat stimulation in humans. Pain. 1998;76 (1-2):223-29.
4.Naliboff BD, Berman S, Chang L, et al. Sex-related differences in IBS patients: central processing of visceral