Living a Healthy Life with Chronic Pain (7 page)

Today most people have access to the Internet. Even if you are not an Internet user, you almost certainly know someone who is. Even if you do not have a computer, you can use one in your local library or ask a friend for help.

The Internet is the fastest-growing source of information today. New information is being added to it every second of every day. The Internet not only offers information about health (or anything else you can imagine), it also provides several ways to interact with people all over the world. For example, someone who has interstitial cystitis, a painful and sometimes embarrassing condition, might find it difficult to find others with the same problem where she or he lives. The Internet can put that person in touch with a whole group of such people; it doesn’t matter whether they are across the street or on the other side of the world.

The good thing about the Internet is that anyone can maintain a website, a Facebook or other social network page, a blog, or a discussion group. That is also the bad thing about the Internet. There are virtually no controls over who is posting information or the accuracy or even safety of what is posted. So although there is a lot of very useful information out there, you may also encounter incorrect or even dangerous information. Therefore, never assume that information found on the Internet is automatically trustworthy. Rather, approach it with skepticism and caution. Ask yourself: Is the author or sponsor of the website clearly identified? Is the author or source reputable? Are credentials listed, and are they verifiable? Is the information contrary to what everyone else seems to be saying about the subject? Does common sense support the information? What is the purpose of the website? Is someone trying to sell you something or win you over to a particular point of view?

One way to analyze the purpose of the website is to examine its URL. The URL is the website’s address on the Internet. You will find it in a bar in the upper-left corner of the computer screen. It will start with the letters http or www. The URL will usually look something like this:

www.patienteducation.stanford.edu
or
www.stanford.edu

At the end of the main part of a U.S.–based website’s URL, you will most commonly see another group of letters preceded by a period: .edu, .org, .gov, or .com. This will give you a clue about the nature of the organization that owns the site. A college or university’s website URL ends in .edu, a nonprofit organization in .org, a governmental agency in .gov, and a commercial organization in .com. The URLs for some of our favorite reliable websites are listed above and at the end of this chapter.

As a general rule of thumb, American sites with URLs ending in .edu, .org, and .gov are fairly trustworthy (although a nonprofit organization can be formed to promote just about anything). Many Canadian-based websites end in .ca, so you will have to investigate whether a site is affiliated with a school, nonprofit organization, government agency, or commercial enterprise. A website with .com in the address may be trying to sell you a product or service. This doesn’t mean that a commercial website can’t be a good source of information or assistance. On the contrary, there are many outstanding commercial sites dedicated to providing high-quality, trustworthy information.

Social networking sites and blogs are exploding on the Internet. These are websites where people with similar interests connect to socialize, discuss issues, or share information. Sites such as Facebook, Blogger, and PatientsLikeMe are currently very popular, but new ones may have emerged by the time this book is published.

These sites enable the average person to communicate easily with others who want to listen to or read what she or he has to say. Some sites, such as Facebook, require users to control who is allowed to read their posts. Others, such as sites hosted through Blogger, are more like personal journals that are open to anyone.

Many such websites have been started by people living with particular health conditions.

These authors are eager to share their experiences. The information and support offered can be valuable, but again, be cautious: some sites can be proposing unproven and dangerous ideas. If you are unsure about something you find on the Internet related to chronic pain, ask your health care provider for his or her opinion.

Yahoo, Google, and other websites offer discussion groups where people can post about just about anything you can imagine. Anyone can start a discussion group about any subject. The groups are run by the people who start them. Given any one health problem, there are probably dozens of discussion groups. You can join groups and partake in the discussions if you wish, or you can just “lurk” (read without interacting). For the person with interstitial cystitis, for example, a discussion group may allow her to connect with people who share her experiences. This may be her only opportunity to talk with someone else with her rare condition. Similarly, for someone with depression associated with chronic lower back pain who finds it difficult to talk with someone face-to-face about his problems, the Internet offers an alternative.

To find discussion groups, go to the Google or Yahoo (or any other) home page and search for a link to “groups.” You may have to create an account with the sponsoring company before you can view or participate in the discussions, but this is quick and free to do. Despite the fact that it is an “account,” you do not have to provide financial information to sign up, nor are you under any obligation to purchase something. An account simply provides you access to the community of online groups hosted there.

Keep in mind that the Internet changes constantly. Our guidelines reflect conditions at the time this book was written. Things may have changed by the time you read this. Becoming an effective resource detective is one of the jobs of a good self-manager. We hope this chapter has given you some ideas about the process of finding resources in your community and beyond. If you find resources that you think we should add to future editions, kindly e-mail them to us at:

[email protected]
.

To learn more about the topics discussed in this chapter, we suggest that you explore the following resources:

• Association of Cancer Online Resources (ACOR):
  www.acor.org
  
• Canadian Institutes of Health Research (CIHR):
  www.cihr.ca
  
• CarePages:
  www.carepages.com
  
• CaringBridge:
  www.caringbridge.org
  
• Center for Advancing Health:
  www.cfah.org
  
• Centers for Disease Control and Prevention (CDC):
  www.cdc.gov
  
• HealthCentral:
  www.healthcentral.com
  
• Mayo Clinic:
  www.mayoclinic.org
  
• MedlinePlus:
  www.nlm.nih.gov/medlineplus
  
• Memorial Sloan Kettering Cancer Center:
  www.mskcc.org
  
• National Cancer Institute:
  www.cancer.gov
  
• National Institutes of Health (NIH):
  www.nih.gov
  
• National Institutes of Health Office of Rare Diseases Research:
  www.rarediseases.info.nih.gov
  
• National Library of Medicine tutorial for evaluating Internet health information:
  www.nlm.nih.gov/medlineplus/evaluatinghealthinformation.html
  
• PatientsLikeMe:
  www.patientslikeme.com
  
• Psych Central:
  psychcentral.com
  
• QuackWatch: Your Guide to Quackery, Health Fraud, and Intelligent Decisions:
  www.quackwatch.org
  
• U.S. Department of Health and Human Services (HHS):
  www.healthfinder.gov
  

C
HRONIC PAIN CONDITIONS ARE ACCOMPANIED
by symptoms. These symptoms are signals from your body that something unusual is happening. In addition to pain itself, symptoms may include fatigue, poor sleep, depression, anger, stress, and memory problems. Usually symptoms cannot be seen by others, can be difficult to describe, and can occur at unexpected times. Although some symptoms are common, the ways in which they affect us are very personal. What’s more, these symptoms can interact with each other. This interaction may worsen existing symptoms and pain and even lead to new symptoms or problems.

Regardless of the causes of symptoms, you can deal with them in similar ways. Again, our self-management tools are the key to success. In this chapter we discuss several common symptoms, their causes, and some of the tools you can use to manage them. There is also a section on how to cope with unemployment. Additional cognitive tools—ways you can use your mind to calm your nervous system and help deal with many of these symptoms—are discussed in
Chapters 5
.

Learning to manage symptoms is very similar to problem solving, discussed in
Chapters 2
. First, identify the symptom you are experiencing. Next, determine why you might be having the symptom at this time. This may sound like a simple process, but it is not always easy.

You may experience many different symptoms, and each symptom may have various causes. The ways in which these symptoms affect your life also differ. All these factors can become very tangled, like the frayed threads of a cloth. To successfully manage symptoms, you need to figure out how to untangle the threads.

One way to approach this is a daily diary or journal. Keeping a journal can be as simple as writing your symptoms on a calendar along with some notes about what you were doing before the symptom started or worsened, as shown in the example in
Figure 4.1
. After a week or two, you may see a pattern. For example, you may notice that on nights when you go out to dinner, you have trouble sleeping. Once you realize that, you become aware that when you go out, you tend to overeat and drink a couple cups of coffee after the meal (something you don’t do at home). Now you know to adjust your behavior in the future to avoid experiencing sleep problems after a night out on the town. Or you may notice that after every time you babysit the grandchildren you experience more pain than usual. This may cause you to consider what kinds of activities you are doing with the grandkids. Can you modify those activities to include a nap for the kids and a rest break for you? Or is it one particular activity that is causing your pain flare-up? Recognizing patterns is the first step in symptom self-management for many people.

As you read this chapter, note that many of the symptoms we discuss have the same causes. Also, note how one symptom can lead to other symptoms. For example, pain may cause you to Dealing with Common Symptomsunconsciously tense your muscles in the area where you are hurting. As a result, you change your posture, and then you are not standing straight and tall. Instead you are stooping a little. This change in posture may change the way you walk. This new way of walking may change your balance, generate a new pain, or cause you to fall. As you gain a better understanding of this cycle of symptoms, you will be able to identify better ways to address them. You may also find ways to prevent or lessen certain symptoms.

Read on to learn what you can do to lessen some of the more common symptoms experienced by people with chronic pain conditions.