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.

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.

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  • Chronic pain is a brain disease, in that a neuroadaptation occurs and pain signals to nociceptors (pain receptors) create a feedback loop. Imaging shows different areas of the brain are activated with acute pain versus chronic pain. Also we can have both at the same time. For example. An injury can cause a skeletal abnormality, e.g. , a leg length discrepancy which causes a contralateral rotation of the pelvic girdle. People experience acute pain every time the stand or walk or sit too long. PLUS, the brain has unregulated nociceptors, creating increased pain sensitivity. Plus chronic causes depression which also results in increased hypersensitivity to pain. Lastly what is needed is individualized treatment by select pain doctors who can prescribe, with impunity, high doses of pain medication based on the patients needs, not what congress deems as appropriate. For many pain patients (Regional pain syndromes or Arachnoiditis, etc…), suicide is the solution. This is madness. Less that 10% of those prescribed opioids for legitimate pain will become addicted. The other, while physically dependent, do not use the meds for euphoria , but rather to enjoy the life they had–if even only for 3-5 hours per day–its something to look forward to. The alternative is bed bound, depressed hopeless people who want to die. New options are Oxytocin and Ketamine nasal spray and rMBS are being developed to reset the pain signal. Until there is anything that works even 75 percent as well as opioids,..we need availability opioids to help these people experience a small portion of their life each day. Without that, hope is lost. And unless you have experienced this kids of severs and chronic pain–you have no idea what its like. None.

  • I got a gastrointestinal issue during Desert Storm, In 1992 I had my first surgery. Thus began my journey with Chronic pain. The nerve bundle under the bottom left rib was destroyed. The second surgery was to correct the problems from the first surgery. This surgery just added to the pain, they destroyed the nerve bundle on the right side of my chest. My third surgery was to fix the problems with the first two surgeries. This failed, the nerve bundle in the center of my chest was completely ripped apart, and my xyphoid process. In total I’ve had 35 major surgeries, over 250 procedures, 3 heart attacks, 5 strokes, A-Fib, problems with my left ventricle, and just last month I was diagnosed with Parkinson’s Disease. The pain is so bad at times I can not get out of bed without help from a roommate. There is very little I can do by myself, sitting, and laying down are the only things I can do comfortably, And I can’t do either of those things for very long. When I walk I lean to the right side, but my head leans toward the left. I was on 20mg of oxycontin 5 times a day, at that point I could even ride my horses. The pain was still there, but I could function somewhat normal, whatever normal is. I have had MRI’s CAT scans, been to 4 pain clinics, both in the Veterans Hospital in Oakland, CA and Phoenix, AZ. Since the opioid crisis started, I get NO pain meds that work. For 5 years I have been so bad I’ve had to be rushed to the hospital, because it hurt so bad I could not take a breath in. I can’t live on my own, and need someone around 24/7 to help me get up, and in case I fall again. I’ve been told by all my doctor, and I have a lot of doctors, That there is no way to cure the pain, and everything we’ve done to try to get somewhat comfortable, or even move hasn’t worked, but still trying new things. I don’t want all the drugs I take, and all I really want is to try to live a decent life. The pain fuels anger. I am the type of person that takes a lot to get me angry. However the last 6 months have been pure Hell for both my roommates, and myself. I get angry at almost anything for any reason. I thank God everyday for my friends and family for their help and understanding. I can’t even stand long enough at the counter to make a sandwich, so cooking is out. Trying to put the pain out of my mind by keeping busy actually helps, and I force myself to walk everyday. It hurts so bad I can’t play with my dogs, but I do that every day. At this point I have literally reached the end of my rope. I will never be pain free, but that doesn’t stop me from doing my best to be me. The doctor at the VA asked me once if I believed in religion? I told her I was born Roman Catholic. She asked if I believe in prayer? I said yes. She asked if I prayed for my health, family etc. I responded that I’d pray, but not for anything she asked. I told her everytime I lay down, when my head hits the pillow, I ask God to please not me wake up. My health has gone so far down hill in the last 5 years, my parents can’t sleep, no matter how good I try to sound on the phone, they’re not buying it. I don’t go to family functions, and at times I can’t even do holiday’s. I can barley get out of the house, and car rides are extreme pain. I have a good outlook on life, and have a very nasty, sarcastic, weird, but funny sense of humor. I enjoy making people laugh. I also keep a good attitude, I don’t complain, and I’m trying to keep up with life, and do as much as I can. I’m a helper according to every one I know. I enjoy helping people in any situation. I’ve let friends live here with their families, at little to no cost, just to help them get on their feet. I also mentor teens who are on the wrong road. I have mentored 27 teens, and in all that time, and all the kids, only 2 relapsed. One now has a family and is doing well. The other, is actually the first person I’ve mentored is having some issues, but I’m still helping him and his family. I met him when he was 14, and now he’s more like the son I never had. So although pain is a huge factor in my life, I do my best to deal with it. I cut way down on what I do, I get out of bed every day just to get up. I can’t lift more than 10lbs but I still try, and with some much needed help, I am getting my strength back, I’m loosing weight again, I walk, and I try to keep my mind busy. When I really hurt I remember breathe in thru the nose, out thru the mouth. It not only helps me breathe thru it, but gives my mind something to think about and it actually works. I am getting a Bio-Wave stimulator, and some nerve blocking meds next week, so I’m hopefull it will help even a little.

    Thank you for reading, and I’m always open for suggestions or just to talk. Again Thank you for reading

  • Having chronic pain is not just a single self-defined condition. As the author clearly states, it is a combination of dysfunctions and breaking it down into the seperate areas is very useful: not to whine and feel sorry for ourselves only. There are stages and the best approach that I’ve found is to address each condition forcefully. That means a complete change of lifestyle.
    This applies to those of us who are never going to become completely pain free, and will have to deal with serious levels of the various coexsisting maladies. As Mr. Bowen succinctly articulated his other numerous side effects, they all become linked together.
    But as has been noted many times, there’s no one approach that suits everyone. We all have different levels of helplessness, anger, depression, concurrent painfulness in our bodies that usually stem from one or more initial injurious damage that cannot be resolved with surgeries or other interventions.
    I’ve had to contend with injury stemming from adolescence and again in my late thirties: incidents which then snowballed into connected other areas. These are knees, lumbar spine, wrists, and my big toes. I’m fast approaching 70yrs of age and have to look forward to bilateral total knee replacements, and further cutting perhaps into my feet and wrists.
    So chronic pain is something that I live with using all the available measures to maintain a productive life. This is not the same career path I had been on. But now finally that I’m old enough to replace the knees (15yrs of full use before they too need to be replaced).
    During my life I’ve remained very active and productive in various ways that I am proud of being able to do. Without understanding physicians, physical and mental therapists, a good medication regime, meditation, and support from family and friends I doubt that things would have been as fruitful. Don’t try to do this all alone.

  • Believe me moving with RA/(Rheumatoid Arthritis) makes it worse not better i would disregard excersing more if you have that ive been told numerous times by my rheumatologist and primary care not to exacerbate the pain like going for a walk itll make worse not better just my2 cents

  • They are driving people to the street for heroin when they don’t treat pain patients and making the problem worse. They know all this and it is being done on purpose to help destroy this country. Welcome to the USA. The greatest country on earth.

    • You are right Margaret . I worry that my son will simply give up or decide to go to the streets . I am trying to get my legislators in Michigan to listen but they simply won’t . Do I have to lose my son before they will care ? He was a medic waiting for the fire academy when his injury occurred . He was doing ok til the CDC guidelines came out . He doesn’t want to be on pain meds but he has tried everything else . I think it’s about the money these states can get from suing drug companies . I wonder if they will really use the money they get from these lawsuits to help addicts ? Also in many states deaths from illegal opioids is still on the rise . How do they explain that ? Prescriptions down , deaths up …only in America . 🤯

  • Tom, I’m glad you found something that works for you. I am curious though about your definition of chronic pain as being some abnormal response. You characterize it as persisting after or without a disease condition. What about chronic intractable disease due to a disease process, such as arthritis, diabetic (or other) neuropathy? You can’t simply think or meditate this pain away. You can try pain avoidance but when minimal daily activities cause excruciating pain avoidance means basically checking out of all of normal daily activities. Or, you can medically treat the pain and the underlying conditions.

    • Thanks Sue.

      Managing chronic pain isn’t easy. What works for one person doesn’t work for everyone.

      Chronic pain doesn’t improve over time and generally lasts longer than three months. I have both arthritis and neuropathy and know how painful they can be.

      I hope I didn’t lead people to think we can think away the pain. That isn’t possible just like no drug or medical intervention is going to magically make the pain go away (hopefully, some day). But the more you focus on the pain, the more you are going it feel it.

      I don’t recommend pain avoidance, It is one of the pain behaviors I mentioned above. Instead, I recommend pain acceptance. Accepting personal responsibility for self-care and has been a good step for me. While we can’t completely stop the pain, we can at least take control of it.

      I did a quick search to see what scientific research there has been with Cognitive Behavioral Therapy (CBT) for arthritic and neuropathic pain. Check out the research links. (https://www.ncbi.nlm.nih.gov/pubmed/9012765)(https://www.sciencedirect.com/science/article/abs/pii/S0025619611602899)

      Best wishes.

    • Managing chronic pain isn’t easy. What works for one person doesn’t work for everyone.

      While we can’t completely stop the pain, we can at least take control of it.

  • It is not accurate to say there are “2 types of pain, acute and chronic.” It is not accurate to say “chronic pain is an abnormal response.”

    There are conditions (not just cancer) that cause repetitive, ongoing tissue injury for an entire lifetime. Long-term pain can be generated by the same mechanisms as acute pain. If tissue injury is continuous (consider flesh-destroying autoimmune disease, or a badly implanted medical device lacerating internal tissue), continuous pain would be a normal, expected response.

    While a variety of strategies can help with all types of pain, it stretches plausibility to imagine lacerated internal tissue causing acute pain on day 89 magically becomes an abnormal brain response on day 91.

  • Thank you. This so absolutely reflects my own experience and the resolutions I have made to come to terms with my condition. It’s good to know I am not alone in my thinking.

  • Imagine your 70 year old mother who has worked hard all her life and has physically worn out her body being told her golden years were going to be spent in bed and in pain. Imagine the reason she is going to die, in intolerable pain, is that she may become addicted to the only medicine that may allow her have any quality of life. Imagine being told your 5 year old child is hurt and requires surgery, but they cannot have 10 pain pills because when they recover they might be an addict and start seeking pain pills. Imagine you have cancer, but because of the opioid crisis you will have to learn to live through the pain. In all these cases the suffering will be worth not getting pain meds, just in case you may become an addict and start hitting the streets for heroin. Oh but if you should get addicted we will see that you get the best care and required medicine (even though it is an opioid). We make sure this countries addicts get the proper care with no repercussions. Does this sound like a bunch of bull that can never happen? Yes it does, but guess what? It is happening every day. Welcome to the USA.

    • honestly, i’ve transcribed for 25 years until my stroke and encountered very few patients in intolerable pain. m if people exercise daily and eat very moderately {about 1200 to 1500kcal does it for me most days when we only walk four mils, but tonight we;re doing 7, so we’ll indulge in ice cream too

    • Trirpichick Wow … I think I will have my 30 yr old who has had 11 lower back surgeries and still has ruptured discs in his thoracic and cervical just take another lap around the block …. I hope you never have to watch your child suffer to the degree I have for the last 13 years . Your comments are hurtful and ignorant to say the least. Do you even know the meaning of intractable pain . My son is in constant, gnawing , stabbing pain … everyday all day. He takes enough meds to be able to fall asleep just to wake up to the same pain. He doesn’t know if he can survive this injury . I will tell him you said to eat right and walk some more … your comments infuriate me and hurt me at the same time . Just wow .

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