I have had chronic pain for over 17 years. Everything I write about in this column comes from personal experience, discussions with other people in pain and the scientific literature.
I have been to hell and back many times, and know the challenges of living with chronic pain and all of its side effects, including insomnia and depression. I created the PainExhibit.com to educate others about pain and I also write journal articles on issues often not addressed by others.
This essay offers suggestions on how people with chronic pain may improve the quality of their lives. It is not intended to be the be-all and end-all on the subject. I am not a physician nor have I had any formal medical education. Always consult a physician about medical treatment as this column is not intended to replace the advice of your healthcare provider.
According to the Institute of Medicine, 100 million American adults are affected by chronic pain. In addition, systematic reviews have demonstrated that every type of medical intervention provides inadequate relief and the most one can expect is a 30% reduction in pain.
Pain treatment in America has failed and physicians remain unable to manage it effectively. Yet, the medical cost of this failure is approximately $280 billion per year. Providers of medical services and products are making billions of dollars while people with pain continue to suffer.
If failure pays so well, why make any changes?
Industry money has degraded just about every aspect of medicine, including pain medicine, to the point that ethical doctors have no idea the information they receive as “treatment guidelines” may have little to do with science and everything to do with money. Physician associations are often complicit in this perversion of medicine and Congress is also responsible, as they have allowed the pharmaceutical industry to advertise directly to the consumer.
This has created a society where taking drugs is not only acceptable but encouraged. People with pain may be led to believe that drugs are the answer, when in many cases they cause more problems than they solve.
The use of opioid pain medication to treat non-cancer, chronic pain remains controversial. Unfortunately, it is difficult to get objective information about these drugs. On one side there are the anti-drug groups and a cadre of journalists who politicize prescription opioid abuse and overdose deaths. The other side is influenced by the drug industry.
The “War on Drugs” has had a negative impact on access to prescription pain relievers for people with chronic pain. In 2009, approximately 15,000 people died from an overdose of prescription opioid pain relievers. To keep things in perspective, in that same year the number of alcohol-induced deaths was 24,518. That number excludes deaths from alcohol liver disease, accidents and homicides. Tobacco kills an estimated 450,000 Americans each year.
According to the Centers for Disease Control and Prevention, in 2007 approximately 9 million people were using opioids on a long-term basis for medical reasons. Another 5 million were using them non-medically.
Opioid pain medications can help many with chronic pain, especially those with cancer pain. However, studies suggest that even those with cancer pain receive inadequate treatment.
There is a portion of those with non-cancer, chronic pain that may benefit from daily opioid therapy and they should have access to these medications. Physicians for these patients should not have to worry about being prosecuted for prescribing an appropriate dose – which in some cases may be a large dose for those with intractable pain.
However, people benefiting from daily opioids may be a minority of those with non-cancer, chronic pain. Using opioids every day presents a number of difficult problems and these may include tolerance, hyperalgesia, physical dependence, and psychological addiction.
Tolerance for a drug means an individual must continue to increase the dose to obtain a similar level of pain control. Some people develop tolerance rapidly. Opioid-induced hyperalgesia may be defined as worsening pain as a result of long-term opioid use. That means one’s pain medication can actually worsen the pain when used too often. Physical dependence is inevitable for those taking pain relievers daily and this translates into one going through withdrawals when the drug is substantially decreased or stopped. Opioid withdrawals can be very difficult, to say the least. The cause of addiction remains poorly understood and can occur with daily and infrequent drug use.
Addicts with chronic pain can be treated successfully with opioids under the guidance of a qualified physician. In treating chronic non-cancer pain, opioids may be most effective when used primarily for acute pain episodes but not for long-term daily use. Once again, a portion of those with non-cancer pain may benefit from taking opioids every day and they should have access to these drugs.
The majority of physicians who treat chronic pain do one thing very well and that is to write prescriptions, if not for opioids then for other types of drugs. Arthur Lipman, PharmD, editor of the Journal of Pain & Palliative Care Pharmacotherapy, once wrote “but all drugs are poisons.” This statement could not be more true. Any type of drug may be of limited value and many have unpleasant or intolerable side effects. On the other hand, every person is different and if certain medications improve one’s quality of life then they should be utilized.
If an individual has been using prescription drugs for many years, including opioids, it may be difficult to determine if they are actually beneficial. Taking an extended break from these medications may be appropriate. Once the brain and body adapt to life without drugs one can better evaluate if they are truly needed. People should always seek a physician’s advice before decreasing or discontinuing medications, since withdrawals from some drugs may be life threatening.
What are people with chronic pain supposed to do?
The first step is self-efficacy. This is accepting the fact no healthcare provider or anyone else is going to save you from your pain. Ultimately, it is up to you to learn how to manage your life with pain. This may be the most difficult thing for people to accept, but it is also the most important.
In addition, there is a good reason not to be too dependent upon your physician or our healthcare system. Modern medicine is the third leading cause of death in America.
Mourning the loss of how you used to be and learning to accept your new reality are emotionally painful but important. Pain and suffering may decrease over time and individuals should maintain a sense of hope that things can improve. Treating yourself gently and having self-love, acceptance and forgiveness is essential. This takes time and is difficult work but provides great benefits. The assistance of a therapist or member of the clergy may help.
People with pain have a tendency to isolate themselves. Humans need other humans and it’s important to avoid isolation and make every attempt to be around other people. Having a pet can also be very beneficial. In addition, the pursuit of a spiritual path can be of great value. Attending a house of worship can help prevent isolation and meet one’s spiritual needs. Reading inspirational books and meditating can decrease pain and suffering.
Being in nature is important and may provide a necessary boost. Agnostics and atheists will benefit from nature and meditation and these may be effective substitutes for other religious or spiritual pursuits. The key is to find things which inspire you.
Having a sense of gratitude and volunteering to help others will make you feel better. Gratitude involves being able to appreciate what you have, as opposed to focusing on what you don’t have. It is not uncommon for friends and family to misunderstand your pain and some may abandon you. Maintaining relationships with those who are empathetic is important. A hug and human touch can be more effective than any pill. In addition, having a focus in life and setting and achieving realistic goals are necessary. It’s important to keep busy since having too much time to think about and feel your pain can make it worse.
Exercise is very important. People with chronic pain tend to be afraid to move since they worry about exacerbating their pain. But a sedentary lifestyle will only make pain worse. The assistance of a physical therapist may be a good place to begin. Starting slowly and taking baby steps is important. It is not unusual for some exercise to temporarily worsen your pain but then it may reduce it. You will have to be patient and experiment to see what works. You should consult with your physician prior to making any changes.
If you are worried about your drug or alcohol use or feel you may have issues with addiction it is imperative to seek help. One study suggested that close to 50% of our population has addictive behaviors. There is no shame in asking for help and it can be provided by a physician and a 12-step recovery program.
Living with pain is difficult but people can have a high quality of life, regardless. Daily drug use and an overreliance on healthcare providers may have a negative impact on many with chronic pain. Self-efficacy and maintaining a sense of hope may improve your life — along with not isolating yourself and pursuing a spiritual path. Having gratitude, helping others, maintaining personal relationships and working towards realistic goals will benefit you.
“Life begins on the other side of despair.” – Jean-Paul Sartre
Mark Collen has had chronic pain for over 17 years and now advocates for others with pain. He is also an artist and founder of the PainExhibit.com.
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