I’ve been living with chronic pain for more than a decade.

It began in 2009 with nerve damage after emergency groin surgery. Four years later, I fell and hit my head. That fall led to a constant headache, a whistling sound in my ear, back and hip pain, tingling and numbness in my hands and feet, electrical shocks in my legs, muscle soreness, and random pain and burning sensations throughout my body. Years later, after numerous doctor visits and tests, I was diagnosed with fibromyalgia, tinnitus, neuropathy, chronic fatigue, and depression.

I had a hard time adjusting to the pain. I let my symptoms control me. My quality of life suffered along with my physical conditioning.

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Here are five things I wish I had known earlier in this journey, much of which I learned while attending a three-week outpatient program at the Mayo Clinic Pain Rehabilitation Center in 2012 and again in 2018. Each of these would have made my journey easier and might help others living with chronic pain.

Pain isn’t just physical. Chronic pain clearly affects the body, but it also affects emotions, relationships, and the mind. It can cause anxiety and depression which, in turn, can make pain worse.

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At work, I couldn’t handle the stress. I had trouble concentrating, missed deadlines, and made mistakes. At home, I didn’t sleep well and was irritable. I was plagued by negative thoughts like, “Do I want to live like this the rest of my life?” When I reluctantly quit my job at the recommendation of my doctors, I lost more than a regular paycheck and valuable benefits like health insurance and retirement savings: I also lost a sense of self-purpose and self-worth.

As I came to understand the connection between pain and emotional issues, I included mental health care as part of my pain management program to help control my mood and manage stress.

Pain isn’t always curable. Medical professionals don’t have all the answers, nor do they always have cures. There is no magic pill or intervention that makes chronic pain disappear. Sadly, some people with chronic pain may never be pain free again.

To try to relieve my pain, I’ve bounced between all types of health care providers: primary care physicians, pain specialists, rheumatologists, neurologists, audiologists, physical therapists, surgeons, and psychiatrists. I’ve been through X-rays, ultrasounds, MRIs, CT scans, and all sorts of other diagnostic tests. I’ve taken opioid painkillers, non-opioid painkillers, vitamins, and herbs; attended professional lectures; spent countless hours searching the internet; and even had surgery. Some of these helped relieve my pain, some didn’t, and some even made things worse. Meanwhile, they all cost me time and money and delayed my pain rehabilitation.

Not all pain means harm. We learn at an early age that touching something hot hurts. But the presence of pain doesn’t always mean danger.

There are two types of pain: acute and chronic. Acute pain is the body’s normal response to tissue damage or injury and needs immediate medical treatment. It heals and generally lasts less than three months. Chronic pain is an abnormal response and doesn’t improve with time. It can occur in the absence of tissue damage and persist long after the body heals. It changes how nerves and the brain process pain, as misfiring nerve signals continue to tell the body it hurts.

By being able to tell the difference between new acute pain and chronic pain, I have changed how I react to chronic pain by not being so guarded or worried about it.

Change thinking, change life. Thoughts, feelings, and behaviors are connected. Chronic pain makes it easy to feel distressed, to give up and become a victim. “Woe is me,” “life isn’t fair,” and other unhelpful thoughts increase one’s focus on pain and can make it worse. It fosters anger, frustration, and hopelessness. And it leads to what experts’ call pain catastrophizing — an exaggerated negative response toward actual or anticipated pain.

I did my share of catastrophizing. When my symptoms first started, all I could think about was how much I hurt and if the suffering would ever end. I even journaled symptoms and rated my pain each day so I could share with my doctors what I was experiencing. I became overwhelmed.

Move on. If chronic pain doesn’t mean more harm and there aren’t any magical medical answers, what’s left to do? Accept the pain as the “new normal,” adapt to it, and learn how to manage it. Of course, that’s easier said than done.

Here are some of the tools I have found helpful to calm the body and mind and make it easier to function include:

  • Reduce pain behaviors. The body’s natural physical, vocal, and verbal reactions to pain, such as rubbing, wincing, groaning, limiting activity, and complaining, fuel anxiety and intensify pain. I try to avoid these behaviors so as not to draw attention to my pain.
  • It’s harder to hurt when you don’t think about it. I often use watching a funny movie, listening to music, talking to a friend, or doing some other social activity to focus on something other than the pain.
  • Exercise. While it may seem counterintuitive, movement helps reduce pain and improves conditioning. I try to walk each day even though my body hurts.
  • People with chronic pain often do too much when they are having good days and not enough when they are having bad days. I have learned limits and try to pace myself so I don’t worsen my symptoms.
  • Why make things harder than what they are? Techniques like good body mechanics make activities easier, not harder. Heavy lifting, for example, makes my pain worse. So instead of carrying a heavy load in one trip, I divide it into lighter loads and make multiple trips.
  • Pain and tension can form a viscous circle. Muscles tighten and put pressure on nerves resulting in even more pain. I do deep breathing and muscle relaxation exercises to help reduce tension.

In loss, there is gain

Though my losses to chronic pain over the last decade have been steep, I have also gained much through the experience. I gained a new respect for myself, knowing I am in control of the pain instead of the pain controlling me. I gained new friendships. And I am gaining new purpose in helping others manage their own pain. I have set a new course for my journey.

Tom Bowen oversees the Facebook group Chronic Pain Champions — No Whining Allowed. He can be reached at tombowen@q.com.

  • You say in the comments (back before you seemingly gave up on responding to people who don’t agree with you) that you don’t intend to preach or to demonize, but you’re a writer – you of all people should know that what you “intend” with your work barely matters, b/c most readers will not (like me) be digging through the comments to see what you have to say for yourself. If something is obviously being misread by a huge number of people, it means you did not do your job of effectively communicating where you stand. If you really think you’re being misunderstood by everyone who has a problem with what you say, then edit your article so that your true intentions are effectively communicated to your readership. Especially when that readership is a largely traumatized and abused population.

    • I think what the writer simply doesn’t get is that there is a group of chronic pain patients that very little of what he suggests will help. I’ve been an RN for 20 years . 10 of that time spent in hospice . I am an expert at pain and symptom management. I ,as well as my son, have chronic pain. These issues developed because bones and discs and ligaments etc…. that ,due to injury and disease, just won’t work the way they are supposed to. We’ve both had surgery to help correct the problem . I’ve had at least 6 and my son has had 11. Our bodies are not going to ever be ok. We have done everything possible to help ourselves get out of pain . Opioids are our lifesaving medication. Without them we wouldn’t be able to get out of bed. As it is I can maintain a home for us in a safe neighborhood. What irks me is that the writer didn’t say something to chronic pain patients like us. This article could have addressed those of us that will not be helped by anything before we take our pain meds so we can first get out of bed. It feels like he is calling me stupid because I don’t know to do anything other than take a pill . I could write you a care plan that has 10 things in it prior to ever taking a pill … and for many that would work . Not so for me or my son . Seems like these days people like the writer think they know what’s best for everyone. There are 250 million chronic pain patients that take opioids . I’m sure every one of them would give up their meds if anything else worked . I know both my son and I would . The writer does us a disservice and is hurtful when we are not treated as people with intelligence and knowledge concerning our own diseases and injuries and how to live with them.

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