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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 [email protected].

  • Wow. This article was incredibly hurtful to me. As you can probably tell from *many* of these comments, this kind of trite advice may be helpful for people with more mild issues, but obviously a great number of us are in *far* too much agony for your words to do anything other than make us furious/feel unheard yet again/feel like failures. People in our horrible situation do *not* need more pain. I hope you will read this and actually think some, instead of just getting very defensive, as I have seen. A disclaimer on the article could actually be very helpful, but I highly doubt you’ll ever do that. What a shame.

  • Honestly it’s lucky you can move, for me any movement I make sends my joint out, I have had almost everything I have ever loved striped away from me and am only 16 years old.

  • I bet this is one of those hypnotist sympathizers. Total BS page. Try living with aura migraines everyday that never lets up. The aura part of the migraine is what keeps the pain coming back. I’ve done everything in my power to try and get back up on my feet and work. However, the pain is so bad sometimes that it takes all of my energy away only 5 to 10 minutes after waking up from a good night’s sleep. Nobody understands so it’s best not to explain to anyone, but here I am. Worthless, useless and powerless. Thanks for the shame.

  • I would just like to say that everyone needs to be understanding with each other in their comments because everybody’s body and mind reacts differently. I have been in chronic pain for 14 years now I am 39 years old and I have been through a lot in my life and I am at a point where I’ve been running in vicious circles and they just keep prescribing medications and the pain is so debilitating that it has taking a toll on me physically and now mentally I am a very strong minded strong willed person and I’ve always been able to pick myself up and carry-on but this past year I was hospitalized twice and because of the physical pain and The way the medications affect me I have not been able to work for two months now although I do still have my job I could go work for three hours they’re willing to work with me and I can’t even do that and I don’t even know how I’m going to pay for my medications, rent, utilities, food, etc. i’m literally about to be homeless And knowing all that in my head I still can’t function at work it’s the pain and the medications affect me so I am not able to work and I can’t drive and it also takes a toll on your loved ones and you begin to feel like a burden no one is making me feel like a burden I have been on my own since I was 14 years old and have been supporting myself financially and of course I’m trying to get disability I have worked for 26 years on the books I have paid into disability and it’s a hard thing for me to except but if I have disability and that check coming in and I don’t have insurance at the moment and I think once you get disability you get medicaid in the state of Georgia I need to research that The pain is so excruciating and debilitating that now I understand why people get desperate and commit suicide I think suicide is a very selfish act I have always felt that way strongly and I never thought that I would even think this way the easiest way to put it is when a animal is suffering in pain and they get put down that’s the point I’m at it’s like please just put me down donate my body to science but I am not going to give up! Please if anyone out there is having thoughts of hurting themselves I understand why you are having those thoughts but please remember you’re still breathing and alive for a reason otherwise God would take you God still wants you here you still have work to do for God I am at the end of my rope and it helps to read about other people situations other people situations I never thought that I would ever have thoughts of wanting to put myself down and it’s just due to the amount of physical pain that I am in. Also this is the first time I have ever made a comment only thing I have ever commented on is on Facebook and I’m not the type of person that gets on Facebook every day….. Please don’t give up!!!

  • Thank you for this! It was very inspirational. I have a friend who suffers from chronic pain – who is much better now (thanks to the efforts of the doctors at pain-recovery.com), I’m definitely going to make hum read this blog T

  • I know you mean well, but wow. Feel free to change places with me at any time. I’ve been fortunate enough to have an intrathecal pain pump that kept me relatively sane for the last decade, and I say lucky, because I wasn’t just cut off cold when all the opioid hysteria started. Now, the pumping isn’t working much, and I’m scared. I’m glad you found relief for you, but maybe your pain is nothing like mine, or the next person’s or the next.

  • This is very helpful.some stuff you mentioned i have applied but there is more i could do and even though i do good a lot of the time there are times i get lazy with things.but you hit home with so many things.one thing i do try to do always.i try to stau positive and i try to encourage others.no matter how im doing and that helps me to.you have been very informative and uplifting.so right on sll of this
    Appreciate yoi and god bless.

  • Thank you for your comments ReeseS. I read the last comment about the physician that walks 10 miles a day or some such thing … he has No idea the horrible struggle my disabled son lives with each and every moment of the day . I feel bad for his patients . As a hospice RN I’ve run into more doctors that have little knowledge of what their patients daily lives are actually like . If they did the response wouldn’t be to talk about how his life is so full and how he walks 10 miles on his day off and only works 4 days a week . It make me furious . My son was a medic waiting for the fire academy when he injured his back…he deserves to have pain medicine that helps his pain . If he can then manage to walk around the damn block , he’d be grateful . However now pain docs are all about alternative treatments . Most disabled people have NO money for those treatments . Give them their pain meds and then fight to get alternative treatments paid for by insurances . Doctors that have no real clue about pain or pain patients lives should not be in the business of treating pain . My advice instead of listening to a podcast would be to do some bedside doctoring and SEE how they live . Then you will know how to treat them .

  • I am a Pain Management Physician MD, who is very interested in alternative treatments. Thanks very much for your posting. I agree with everything you wrote and will try to incorporate into my practice. I have been walking my two dogs about 10 miles on my days off work about 4 days a week. What keeps me going is listening to podcasts. I listened to a Pain Management podcast today, that I believe you would be very interested in. The Podcast is called “Invisibilia” and the episode is called “The 5th Vital Sign”.

    • This episode had serious issues. By suggesting a narrowly-focused program for one specific condition is treatment for “chronic pain” in general, this episode effectively encourages medically inappropriate treatment of patients with unrelated conditions.

      After negative feedback on this episode from patients and the medical community, NPR responded that the episode “was not meant to serve as a commentary on all chronic pain experiences.” Yet the journalist presented this story as “a key to the opioid crisis,” implying exactly that generalization.

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