Traveling With Chronic Pain? Tips From a Spoonie
Airports Are Big. Flights Are Long. Plan Ahead.
• Purchase your tickets well in advance so you can select your seat – and buy as much comfort as you can afford. Take Business class if you can swing it. If you’re in economy, try to get a seat with extra legroom. And take the window seat. If I can avoid basic economy center seats for the rest of my life, I will.
• Get to the airport early and check your luggage. Even if it’s a carry-on size roller-bag. When I fly by myself, I only carry on the backpack that I can put under the seat in front of me. Managing extra luggage just means additional pain for my hands and wrists.
• Use a wheelchair. When I asked for traveling with chronic pain tips, one of the things my friends and family repeatedly advised was “swallow your pride.” I have a hard time with this. I want to muscle through. But, even in small airports, I find it’s a mistake to think I can muscle through and go without a wheelchair. (And even if I can, I’ve then spent a spoon or two that I might want to save for after I land at my destination!)
The All-Important Carry-on
• Carry on all of your meds. All of them. The drug companies that make my various injectables always have a free travel kit to transport syringes. I’ve never been stopped about my prefilled syringes or my autoinjectors, but I carry a doctor’s note with them just in case. I’ve also never had anyone ask me about my loose supplements, so my favorite way to pack meds is an extra-large pill organizer with everything already counted out and sorted. All of these things have to be in my carry on, because once I had a 24-hour delay between flights and didn’t have access to my pain relievers. I’m never checking them again.
• Try other travel tricks. There are lots of gadgets and do-dads that may or may not make your flights more pleasant. Personally, I am on the fence about my neck pillow. When I’m in the middle seat, I love it. It’s the only way I can sleep. When I’ve been able to plan ahead and get a better seat, then I don’t need it. I prefer to lean against the window with my jacket, and the neck pillow takes up so much room in my carry on, I almost resent it.
I’m also up in the air about compression socks. Some people swear by them. They are uncomfortable to me, and the compression doesn’t help my pain. It’s worth experimenting with, though.
• Don’t forget bath supplies. A long, warm bath is sometimes the best thing for me after traveling with chronic pain.
Once You Get There, Rest.
• If possible, take a full day to rest after you arrive at your destination and again when you return home. When I fly from Atlanta to California, I leave in the morning and make no plans until the following day. It makes me more patient about flight delays, for one thing. But more importantly, the only thing I need to do when I arrive is check in at my hotel and get comfy. I give myself that whole evening to just relax. I order room service. I take a bath. I change into pajamas at 5:30 PM. I go to sleep at 8. It makes me better able to face the next day!
On the other end of the trip, I almost always end up crashing for nearly 24 hours after I get home. At this point, it’s lower stress to just plan for it and let it happen. I feel better afterwards, anyway.
If you would like to discuss what Carolina Pain Scrambler do to help relieve your chronic pain symptoms or receive more information on our treatment process, please do not hesitate to call us at 864-520-5011 or you can email us at firstname.lastname@example.org
What is your relationship to your chronic pain? At first thought, it seems like an odd question. But, if we stop to reflect on it, couldn’t we have a relationship to pain? Don’t you already have one?
The Merriam-Webster Dictionary (n.d.) defines the word ‘relationship’ as “the way in which two or more people, groups, countries, etc., talk to, behave toward, and deal with each other.” We usually think about relationships as applying to people, such as our spouses, children, family, or enemies, but we also have relationships to non-human beings, such as God and pets, and even inanimate things, such as our work, our children’s schools, our own alma maters, our country, or nature. We also have relationships to things that are somewhere in between, such as our bodies. Might we not have a relationship to chronic pain?
Let’s look at a number of different possible relationships to chronic pain. We’ll simply try to take an inventory of different relationships without judging whether they are good or bad or better or worse than any of the others. Our only goals for taking this inventory are to see how people relate to chronic pain and to see how different people relate to chronic pain differently.
Chronic pain as something that we must get rid of
In the acute medical model of healthcare, we often treat pain as something that we must get rid of. It’s a bad thing. It’s so bad, in fact, that we might unquestionably go to great lengths and almost all costs to get rid of it. As healthcare providers and as patients, we try one therapy after another, one procedure after another, and one medication after another.
All this healthcare hardly ever requires justification: our relationship to pain is such that it is something, which is assumedly bad — so bad, in fact, that we must get rid of it.
Chronic pain as something that we fight against
Indeed, pain is something that we declare war on. For after all, it is often thought of as fighting us. It’s stabbing, piercing, jolting, burning, and pounding. It’s like hand-to-hand combat, but it’s our hand, or arm, or leg, or neck or low back that’s fighting us. Our bodies have turned against us and the pain is insidious and relentless. It’s taken our life away. Our relationship to pain in such instances is one of fighting and war. Like any people under siege, we vow to maintain hope by never giving up the fight.
Chronic pain as something that imprisons us
Patients commonly tell me that they wish the painful part of their body could just be cut off. When you think about it, there’s something very primitive about this wish. It brings connotations of what an animal might do when caught in a steel jaw trap: it chews its limb off.
Pain can indeed capture our attention and ensnare us. We might find ourselves entertaining doing most anything in order to become pain-free. Our relationship to pain at such times is one of having been taken prisoner. Having lost our abilities to move about freely, we have to stay at home and rest day after day. Our sentence: house arrest.
Chronic pain as a mechanical problem that requires a fix
We can also think of pain as a mechanical problem for which there must be some type of fix. Both providers and patients can relate to pain in this way. Spine surgeons and interventional pain physicians commonly conceptualize back pain as ‘mechanical back pain.’ A common explanation for sciatica is that a disc in the low back has ‘slipped’ or ‘ruptured’ and is now ‘pinching’ the nerve that extends down the leg. It brings connotations of a car engine part slipping out of place or breaking altogether and is now pinching some important cable or hose. In a procedure called a ‘discectomy,’ a spine surgeon attempts to free the pinched nerve by scraping away the part of the disc that’s impinging the nerve. Interventional pain physicians attempt to temporarily reduce the inflammation around the ‘pinched’ nerve with epidural steroid injections. They might also attempt to temporarily deaden the nerve altogether with a rhizotomy (i.e., a radiofrequency neuroablation procedure, or what is called a ‘nerve burning’ procedure).
Chronic pain as something that is the result of a long-lasting injury
We can also relate to chronic pain as something that is the result of a long-lasting injury. In conditions that are acute, such as a bone fracture, pain occurs and we think of it as the result of the underlying acute injury. In such cases, we tend to react to the pain by staying home and resting. Commonly, people think of and react to chronic pain in similar ways. Even if it has been years since the onset of the initial injury that started the pain, we can think of the original condition as remaining unhealed (or even getting worse) and continuing to cause the chronic pain.
As such, we might remain concerned about making the underlying injury worse and engage in behaviors that we think will prevent harm. Similar to what we might do with acute injuries, we might stay home and rest. We also avoid activities that we think have a chance of making the underlying injury worse. In these ways, we tend to think of the pain that occurs with activities as a sign that we are in fact making the underlying problem worse.
Chronic pain as an illness
Sometimes, people with chronic pain think of themselves as ill. Their relationship to pain is one of illness even in cases of chronic pain that started with an injury or had no identifiable cause. They hear explanations for back pain, such as ‘degenerative disc disease,’ and understandably think of themselves as having a disease. People with headaches too can often refer to themselves as ‘being ill with a headache.’ Conceptualizations of chronic pain as an illness naturally lead to the above behaviors that we do when ill: we stay home and rest. Frequently, pain relievers subsequently get referred to as ‘medicines,’ a term that has connotations of something one takes to cure an illness.
Chronic pain as something that is alarming
In all the above ways of relating to pain, there is a common element: it’s that chronic pain is alarming. Whether it is war or imprisonment or a mechanical problem or an injury or illness, pain is an object of concern. It’s not only bad; it is bad enough to do something about it. In other words, it impels us to act like a fire alarm. Such alarms are emotionally distressing. We become concerned and aroused with some degree of fear. We can also cry when in pain. We don’t jump up and down for joy. Rather, we are emotionally distressed while in pain. As such, pain is alarming.
Differing relationships to chronic pain
As is clear, different people can have different relationships to chronic pain and an individual might have different relationships to his or her pain at different times in life. Moreover, this inventory of possible relationships is not exhaustive. There are more relationships that we could describe.
The point is important to remember because when you are in one of these relationships to pain they seem obviously accurate to the situation at hand. It’s hard, for instance, to recognize that it is just one perspective that you might take on pain when you are in one of these relationships. It can be hard to understand how someone might have a different relationship to his or her chronic pain. For instance, one might say, “Of course, you are going fight against the pain… Who wouldn’t?” The relationship to pain as alarming and something that must be gotten rid of seems so obviously true. What the inventory makes clear, though, is that each relationship is but one perspective and that it is possible to have different perspectives that you can take on your pain.
Are there other relationships to chronic pain? Ones that are very different than the above?
Sometimes people with chronic pain have none of the above relationships to pain and are, in fact, not very alarmed by their chronic pain. Rather than fighting against it, they have made peace with it. They are no longer alarmed by it and instead have learned to live with it.
Some people with chronic pain treat their pain like a noisy neighbor next door or in the apartment above. They once tried to get the neighbors to quiet down, but were unsuccessful and so have come to accept that they must learn to live with them. While the neighbors are still noisy, they no longer allow the neighbors to occupy too much of their time and attention. They still hear their neighbors but they then move on with the rest of their day.
Many people with chronic pain have a similar relationship to their pain. They are no longer alarmed by their pain. It’s there, but they realize that there’s not much they can do about it. So, ‘why fight it?’ they might ask. Instead, they move on with their day and get busy with other things. Of course, they would rather not have it, if they had a choice. But, they recognize that they don’t and so accept it. Part of acceptance is that they are just not that alarmed by pain anymore.
Their relationships to chronic pain involve understanding pain as something that is not alarming. They see chronic pain as part of life – the bad, along with the good, that we just have to put up with.
Now, what might that look like?
Chronic pain as a stable condition
Some people with chronic pain see their pain as a stable condition that doesn’t have any bearing on whether they are healthy or not. They might think of it or refer to it as ‘my old war injury’ or ‘my trick knee’ or ‘my old high school football injury’ or ‘my bad back’ or the like. The connotation in these ways of thinking about pain is that chronic pain is an old condition that isn’t going anywhere. That is to say, it’s stable and not going to get much better or much worse. In its familiarity, there’s not much cause for concern. While they may have seen a healthcare provider initially, a long time ago, there’s no need now to get it checked out. They know what it is and know that it is stable.
Notice too that people like who I’m describing tend not to view chronic pain as a health problem. They don’t see themselves as ill or unhealthy or in need of healthcare because of it. It’s a condition that they put up with. We all have things about our bodies that we don’t like or are bothersome, but we don’t feel any strong need to do anything about it because they are not indicators of an illness or poor health. Sometimes, it can be really big things, such as an old spinal cord injury that led to a paralysis. We don’t consider people in wheelchairs as ill. Paralysis is a stable condition that you live with. It is not an indicator of illness. Some people with chronic pain might see chronic pain in a similar way – it’s a stable condition that doesn’t lead to considering oneself as ill or unhealthy or in need of healthcare.
In these ways, they relate to chronic pain in ways that have taken the sense of alarm out of being in pain. As such, it makes it easier to put up with and they move on with their lives. The ‘bad back’ or the ‘trick knee’ or ‘the old war injury’ comes along for the ride, of course, but it is relegated to the background of their life. It is not a daily cause for much concern.
Chronic pain as part of growing old
Some people with chronic pain relate to their pain as something that just happens to most of us at some point in life. [They are not too far from the truth, in this regard. Anywhere between 20-30% of the general population haschronic pain and the percentages increase as we get older (Andersson, 1999; Manchikanti, et al., 2009; Toblin, et al., 2011.)] In this way, it’s not cause for much concern. It’s not unusual or startling. It’s an expected part of life and so it is not especially alarming. “Things are gonna hurt,” they might say with a certain amount of acceptance. Now, they might do things to manage pain, such as staying active, exercising, pacing themselves, and not doing any one thing for too long of a time. At the end of the day, though, they accept it and have made a place for it in their life.
Chronic pain as a broken check-engine light
A common cognitive behavioral intervention in chronic pain rehabilitation is to teach patients to relate to their chronic pain as a broken dashboard check-engine light. It goes something like the following. Acute pain is like a working check-engine light. When it comes on, it signals or warns us that something is wrong in the engine. As a result, we become mildly alarmed, pull over, and bring the car to the mechanic.
Acute pain has a similar function. It’s a danger signal that warns us that something is wrong in the body. As result, we become alarmed, stop what we are doing (i.e., pull over, as it were), and go see a healthcare provider.
Chronic pain is like a check-engine light that’s broken and remains stuck in the on-position. It doesn’t serve any useful function. The nerves are chronically reactive but they are not signaling any corresponding problem in the body (i.e., engine). Even if it is signaling some underlying problem, there isn’t much you can do about it. So, the check-engine light – the chronic pain – remains lit.
What if you had a check-engine light that remained lit up, but your mechanic says that, while there is a problem in the engine, its basically not fixable. He adds that as long as you drive reasonably, such as not driving a hundred miles an hour, it’s safe to drive. He concludes that you should just ignore the check-engine light and learn to drive with it on. You don’t have to become alarmed by it, pull over or bring the car in every time it comes on or remains on. Now, you are no longer alarmed by it and you know that the car is safe to drive as long as you are reasonable about it. After awhile, you may not notice it as much. The check-engine light remains on, but it doesn’t capture your attention as much any more.
Similarly, for most people with chronic pain, it’s safe to keep living life and engage in your normal activities as long as you are reasonable about what you do. With such reassurance from your healthcare provider, you can learn to ignore the pain, relegate it to the background, and not be concerned by it. You don’t have to pull over, as it were, and seek healthcare. You’ve had it checked out and your providers tell you that you should stay active.
The metaphor of the check-engine light takes the alarm out of pain. You still have it. The light is still on when you look at your dashboard, but it is not cause for alarm. So, you keep driving, or living life, engaged in your normal activities, as long as you are reasonable about it.
Some people with chronic pain relate to their pain as if it is a check-engine light that is broken. It provides no useful information. So, they keep living life despite it.
Chronic pain as something you get up and get out of the house for
As we described above, some people with chronic pain relate to pain as an injury or an illness and as such they react to pain as something for which they should stay home and rest. Other people with chronic pain, however, relate to their pain in almost the exact opposite way. When they have a bad pain day, they think to themselves, ‘I got to get up and get out of the house and go do something!’ They tend to think that, if they don’t get out of the house and get busy, all they’ll do is think about how much pain they’re in and how hard life is. In other words, they know they don’t cope very well when they don’t stay actively engaged in the activities of life. As such, they do the exact opposite of those who stay and rest: they get up and get out of the house!
This relationship to pain tends to involve continuing to work despite having chronic pain. For people who relate to pain in this manner, work is not something that one does after they get pain adequately managed; instead, work is a form of pain management. Work helps them to cope with pain. It allows them to get out of the house, structure their day, be involved with others, feel productive, feel good about themselves, and reduces financial stress. All these things buffer their pain by helping them to cope and all of it makes up for any added pain that they may have by being active. Contrariwise, they think that staying home and resting makes them not cope very well. It gets too depressing, for instance, if they don’t have anything else besides pain to hold their attention. They end up feeling unproductive and socially isolated.
Chronic pain as a barometer of what else is going on in life
Some people with chronic pain see their pain as a barometer for what’s happening in their life and how well they are managing it. While they might recognize that they will always have some baseline level of pain due to the medical aspects of their condition, they also understand that the overt fluctuations of pain – whether for the better or worse – are due to how well they are managing the stress in their lives. For instance, they notice that they are having more frequent headaches recently. Rather than understanding it as progression of an illness, they identify that the more frequent headaches are due to the stress of their recent insomnia. Maybe, they notice that their low back pain is worse in the last week. Rather than understanding the increase in pain as the result of ‘degenerating’ discs, they identify that they have been overly busy at work for the last few weeks and as a result they have fallen out of their usual mild aerobic exercise routine.
Understanding fluctuations of chronic pain as reflective of the stress in one’s life allows for people to then do something about it. They work on their insomnia or the workload at work. In other words, they take steps to manage their stress better.
Their relationship to pain is one that involves seeing fluctuations of pain as providing important information. It is not to be dreaded. They don’t feel vulnerable to pain as something that seems to come and go out of nowhere. Rather, they feel empowered by the important information that fluctuations of pain provide them. It allows them to know what they are doing works when their pain reduces or what they need to work on when their pain increases. They know that on most occasions there is a reason for the fluctuation of pain and it involves how well they are managing the stress of their lives. In other words, the relate to chronic pain as a barometer of what’s going on in their lives.
Different relationships to chronic pain for different people
As our short inventory reveals, people relate to chronic pain in different ways. Each relationship to chronic pain can feel like the truth. They each seem obviously accurate to the situation at hand. It’s important, however, to recognize that it is possible to relate to chronic pain in very different ways. You don’t have to be stuck in any one particular relationship.
I’ll leave it to the reader to reflect on your personal relationship to chronic pain. You might see yourself in one of the relationships in the inventory above. Or maybe you have an altogether different one. Maybe you could comment on this post and describe it for us. I’ll also leave it to you to consider whether your particular relationship is the most accurate understanding of pain and the one that’s best for you. It may be. However, it might not be.
It is therefore important to reflect on your particular relationship to chronic pain and whether you might change it if it’s not working for you. If you feel stuck, it’s possible to change your relationship to pain. It likely will take some work on your part. It may even require the assistance of some chronic pain rehabilitation providers or a full-fledged chronic pain rehabilitation program. But, it is possible to do. You can change your relationship to chronic pain.
Article Provided By: Institute for Chronic Pain
If you would like to discuss what Carolina Pain Scrambler do to help relieve your chronic pain symptoms or receive more information on our treatment process, please do not hesitate to call us at 864-520-5011 or you can email us at email@example.com
Where Chronic Pain Hurts the Most
- Communication – Learning more effective ways of communicating and interacting with important people in your life when you don’t feel well is a major step. Ask for a referral to a psychologist or therapist who can help you hone these skills.
- Show Up – You may not be able to make it to every function, but make a commitment to yourself to be more present at events or get-togethers. Pace yourself and have a plan to leave when you feel the time is right.
- Steady Your Mood – Work on ways to calm mood swings through techniques like meditation, mindfulness, and breathing exercises. A pain psychologist can help you learn helpful tools.
- Count Kindness – At the end of each day, jot down a quick list of things you did that showed kindness toward others, as a gentle reminder.
- Volunteer – Find an organization or activity that has meaning to you and donate a little bit of your time each week.
- Support Others – Finding the right support group can be tricky, but it is worth the effort to try. Look for groups that engage in healthy activities and try to encourage its members, as opposed to ones that are overly negative.
Give this love-centered strategy a try. After all, nobody can thrive on an empty tank.
Article Provided By: WEBMD
When Chronic Pain Takes Away Your Life
Pain changes us. The minute we start to hurt, we make adaptions to how we move, what we do, and where we go. When we keep re-organizing our lives around our pain, we can become separated from our typical daily routine. The more we start to pull back, the less likely we are to go to work, exercise, walk, or even leave the house. Once this happens, we feel ourselves disconnect emotionally from friends, loved ones, and co-workers. Very quickly, we can start to lose much of what we value and enjoy about our lives.
Unfortunately, this kind of loss can be the biggest casualty of having chronic pain. Let’s take a look at some of the life-changing types of losses that I see patients face on a regular basis and where to look for help.
- Family – As I often say, when one person at home is in pain, everyone who is living there hurts. A pain problem affects each person in the household in some way. The pain experience can disrupt how we interact with those closest to us. It may cause us to have mood swings or may prompt us to pull away from others, making it more difficult for everyone at home to communicate and support each other. Sadly, this can sometimes fracture relationships or even break up marriages.
- Intimacy – If you find yourself avoiding intercourse because of pain, then you aren’t alone. For example, this can be a common problem for patients with low back pain or fibromyalgia. But in my experience, patients are often reluctant to bring this up with their doctor, and so, aren’t able to get the help they need. Besides the physical difficulties that can arise, the emotional consequences of being in pain can also make intimacy a big challenge. Feeling stressed or depressed over your health can stand in the way of bonding deeper with a significant other.
- Income – Tragically, I have seen patients lose their careers, their life’s savings, and even their homes because of chronic pain. I have even seen some patients become homeless or start to live out of their cars, all because they could no longer stay employed because of the amount of pain they were in. Limitations with lifting, bending and carrying, as well as difficulties with tasks like keyboarding or even just sitting at a desk, can mean the loss of a long-standing career or can stand in the way of getting get back into the workforce. And beyond the financial consequences, there can be a deep-seated loss of self-esteem and self-identity from losing a career or no longer being a breadwinner.
- Fun – Let’s face it, we all need to laugh, play, and have some fun in life. But sometimes the pain we feel stands in the way of doing some of the things we enjoy the most. That can include everything from the sports we like to play, keeping up with a favorite hobby, to dancing or just getting out of the house to visit friends or see a movie. Being in pain is no fun, but staying in pain can make having fun a big challenge, too.
The wounds from the loss we experience can run deep, but finding the healers out there can be a crucial step toward recovery.
If you would like to discuss what Carolina Pain Scrambler do to help relieve your chronic pain symptoms or receive more information on our treatment process, please do not hesitate to call us at 864-520-5011 or you can email us at firstname.lastname@example.org
Why You Need Hope
“Is there hope?” is a question I hear often. One of my patients struggling with a low back injury recently mentioned that doctors keep telling her that there is no hope. The look on her face told me how upsetting this was for her, and she asked me, “What do you think?”
Before I tell you my answer, I first want to be clear about why both the question and the answer matter.
Broadly defined, hope is a feeling or expectation for a desired outcome. Using standardized tests like the Hope Scale, a number of different studies looking at the impact of hope on chronic disease suggests that it is associated with improved outcomes. Higher levels of hope often correlate with increased life satisfaction scores, better lifestyle habits, and lower levels of depression and anxiety. Cardiovascular problems seem to recover more favorably in patients that are more hopeful.
When it comes to chronic pain conditions, whether it be back pain, fibromyalgia, or migraines, experiencing constant pain can easily squeeze hope out. You want to stay optimistic and have a positive outlook, but the more you hurt, the more you start to question whether or not good times can lie ahead. Behavioral health researchers sometimes refer to this as emotional conflict, meaning all of this worrying about your future starts to take a toll.
Interestingly, a certain part of the brain, known as the rostral anterior cingulate cortex, seems to play an important role in boosting hope. In theory, the right thoughts or mindset generated from there help trigger a surge in more positive feelings or emotions in the brain’s emotional processing center called the amygdala, and this, in turn, activates behavior changes that eventually lead to accomplishing desired goals. The key step is mustering the right outlook to set this reaction in motion, and this is where folks can get stuck. If you start off with the notion that “This condition is chronic and won’t go away, and therefore, there is no hope,” then this plane will never get off the ground.
Having a rosy outlook when things are going well is one thing, but seeing a glimmer of light when things seem to be at their darkest can pose a bigger challenge. The first step is finding that all-important spark that can rekindle hope, and then you can build your path forward based on the hope, not the pain.
When No One Believes You’re In Pain
As a pain specialist, I’ve learned that one of the most powerful things I can do when I meet a new patient is to provide a sense of validation. Many of my chronic pain patients show up for their first appointment feeling misunderstood, frowned upon, or just not taken seriously. Most feel isolated – on an island with no one else to understand or appreciate what they are going through.
This sense of feeling misunderstood is partly due to the fact that there really isn’t a test that can detect and convey the complexities and impact of a pain experience, making the patient feel like they are on their own to prove how they feel. When something like pain can’t be put into a medical box of test results and data, then patients start to feel as though their doctors aren’t able to wrap their arms around the full breadth of their situation. And if the doctor isn’t getting it, then how can they possibly explain what is going on to their spouse or best friend? Insurance companies may start to question why you are still asking for treatment and not getting better, and coworkers start to frown when you miss work, especially if you don’t look injured on the outside. As all of this builds up, the person in pain feels increasingly more isolated and more likely to shut down.
But this shut down created by an absence of validation can zap the patient’s motivation to move forward in a positive direction. That is precisely why I try to make a concerted effort to let my patients know that I will do my best to better understand what it is like to walk in their shoes.
If a lack of empathy and understanding has gotten you down, here are three tips to help you work through this challenge.
- Connect with people who get it. There are millions of others out there struggling with pain problems, some that may be very similar to your own. Making connections with others who have had similar experiences can be very empowering and provide valuable social support. Whether it be in-person or online, look to build bonds that will boost you up, not bring you down.
- Remind yourself that you are not your pain. At the end of the day, you can only do so much to help doctors or important people in your life understand what you are going through, so don’t let your sense of self-worth and self-esteem get too wrapped up by how others see your pain. There is so much more to you than your challenging medical condition. Start to reconnect with your interests, passions, and hobbies again, or branch out and start new ones.
- Don’t fret about the test. When it comes to understanding pain, both patients and their doctors put way too much emphasis on test results. Diagnostic findings on x-rays, MRIs, or blood tests should not be viewed as a way to rate how much pain a person is in. Some of the worst pain problems that I treat don’t have a test that can adequately diagnosis it, let alone pinpoint a way to treat it. I often say that I treat patients, not MRIs.
I know it feels unfair to be in pain and not receive the empathy and emotional support from those closest to you, but staying fixated on what you’re not getting from others can keep you stuck. Instead of worrying about how others see you, focus on taking the steps toward the life you truly want to lead.
By: PETER ABACI, MD
Treatment Plan: Do Nothing?
It’s cold and flu season again and we all do the best we can to stay well and avoid catching an all-too-contagious virus. We each have our own go-to plans of how to fight it: vitamin C, zinc or elderberry supplements, gargling with salt water, staying warm, rest and binge-watching Netflix shows. My grandmother swore by anise candy that she made from scratch, while my father prefers a hot toddy to remedy a cold. Washing hands is still the number one way to avoid illness — along with avoiding contact with your face, and keeping your immune system strong.
Far too many of us have also taken antibiotics despite the fact that they do nothing for a virus and their overuse has now created resistant strains of bacteria for all humans (Ventola, 2015). You may be tempted to go to the doctor for antibiotics “just in case,” and then the antibiotics are falsely credited for your recovery since you always do eventually recover. Primary care physician and medical director at Chapa-De Indian Health, Dr. Mike Mulligan, says in reference to antibiotics, “If I do nothing I will be doing right by patients most of the time compared to if I prescribe something. If I prescribed antibiotics for everyone who wanted them, I would most often be doing wrong.”
Typically when we go to the doctor we expect someone to do something, yet overtreatment is far more common than under-treatment and the impact causes real harm. Dr. H. Gilbert Welch has investigated how and why this happens for many health problems including heart conditions, headaches, back pain, knee and hip joints, gastrointestinal disorders, and even cancer. In his book Less Medicine, More Health (2015), he examines how early detection hasn’t led to saved or improved lives, which defies logic at first glance. The over-prescription of medications alone is nothing short of epidemic, most glaringly seen with the overuse of opioid pain medications.
Chronic pain is that much more frustrating because of its long duration and frequently leaves people feeling Something More Should Be Done. It seems like Something Else Must Be Wrong if only the doctor could find it. Each specialty department shakes their heads and gives the “good news” of normal or inconclusive scans. Navigating health care systems is not easy to begin with and there are still far too few comprehensive pain management programs that focus on functional rehabilitation. Once in a while the ragged pursuit of Something Else can lead to a more thorough workup or referral to a good treatment program. It depends where the Doing More is directed. Too often, the quest for the Something Else leads to tests and treatments that carry their own risks without relief; often frustrating and distracting to the patient and doctor, resulting in more pain, medical appointment exhaustion, and patients feeling demoralized and hopeless.
Chronic pain has few circumstances where invasive procedures are the best choice. Usually if surgery is warranted it becomes quite clear early on and a 2nd or 3rd opinion will render the same conclusion. The risk of more pain is high with surgery when done because “it might help,” even if the structure has been “fixed.” To a surgeon, fixed means correcting the abnormality. To you as a patient, fixed likely means less pain and improved function. The past 30 years has revealed that abnormal scans of the lumbar spine are common among pain-free individuals and normal scans are common among those who experience pain (Jensen, et al., 1994; Borenstein, et al, 2001). So if the abnormal is normal and abnormal findings do not predict pain, what do we do now?
Last week my daughter’s knee swelled up larger than a softball until she could no longer bend it. We had an x-ray and waited. And waited. The swollen mass grew bigger and her doctor reassured us that ice, elevation and anti-inflammatories were the best treatment. This was hard for me to believe and my mind raced: What caused it? There must be a reason! Why is it so large? Can’t we test the fluid? Can’t we do something to make it go away quickly? I felt like I was Doing Nothing and this felt terrible, but her doctor had ruled-out life and limb-threatening infection and it was the right call. Had I gone to the emergency room, the fluid may have been tapped, risking infection, leading to antibiotics, potential complications and unwanted effects, including more time in bed. An MRI may have revealed an abnormality that was unrelated, which could have led to Doing Too Much. My worst fears were not realized, but it was tempting to buy into the fear that Doing Nothing would lead to a bad result that could have been avoided if I had Done More. What felt like Doing Nothing really was doing something – something at home (elevation, ice, anti-inflammatories, and coping with fear and pain) and Nothing More at the hospital.
It is tempting to assume:
- If there is pain, something is wrong.
- If something is wrong, it can and should be found if we look hard enough.
- Once it is found, it can be fixed.
- If it is fixed, I will feel better.
These assumptions are myths that have been dispelled over time. Sometimes we hurt without any abnormal findings. Sometimes looking harder leads to more problems rather than fixes. Even if the source of pain is found, it may be best to avoid invasive treatments. And the fixing of found abnormalities helps — if you are a car (but even then be cautious of overtreatment!).
But isn’t the pursuit worth the risks? Welch’s data suggests not. One common example is a CT scan – the radiation may increase cancer risk and should be avoided whenever possible. But there also are lesser known risks he calls “incidentalomas” – those incidental findings that appear abnormal on a scan, but do not actually explain or contribute to the symptoms you are experiencing. These red herrings lead to many unnecessary procedures including what I call health-ectomies, or removal of healthy organs in the hopes that it will solve the problem. This is very common in abdominal pain, one of the leading causes of emergency room visits (CDC, 2011). In our highly medicalized society that relies on technology to save us, we can be misled to think that everything can and should be found on a scan or test. However, the search may only distract you from good self-care in the pursuit of an outside fix. Living in the information age leads us to think that more information is better, but more is not always better. “Better information is better,” Welch says (2015). We need useful information to move forward with clarity in medical decisions and health. “At least I would know” does not work if it distracts you from the truth. The truth may be that your disks are degenerating, but it is not typically the cause of your discomfort.
It’s frustrating to be told no, you don’t need that test, that the cause of your suffering is unknown, or that there is no cure. “That’s all I can do,” are not words we like to hear. They rank up there with “Could it be depression?” Your doctor may or may not have explained to you why more tests are not recommended. Some people suspect it’s to save money, but most clinics have financial incentives to perform more tests, not fewer. You as the patient may feel more taken care of, more thoroughly examined, but it may not lead at all to better care. Sometimes it is best to Do Nothing, at least nothing at the doctor’s office.
The Fear of Missing Something
The Fear of Missing Something is real and powerful. Any doctor can tell you how terrible it feels when something has been missed. It haunts them for a lifetime. This is a fear of patient and doctor alike, although it is overtreatment that is the common daily occurrence. Most of us feel better Doing Something. Mistakes are made when we are guided by fear rather than facts. We depend on doctors to rule-out anything life-threatening. Afterwards, it can feel devastating when it’s suggested that you “learn to live with it.” But this is not because doctors don’t care enough to do more. Most health care providers really do care, and they care enough to do less. This is where their job ends and yours continues.
Chronic pain is often part of a feedback loop with the central nervous system that becomes sensitized even when the pain signal from body to brain carries no new or useful information about the condition of the body. Inflammation and degeneration are common pain-related issues best treated by lifestyle improvements. A spinal fusion may “fix” the current instability, but create more instability in surrounding areas. It may “fix” the problem, but also severely decrease range of motion. Medication almost always has unwanted effects. Injections have risk and the benefits must outweigh the risks for it to be a good choice for you. Physical therapy may hurt and you swore you would never go back, but finding a physical therapist who specializes in chronic pain is a key part of rehabilitation. Dr. Nobert Boos and colleagues (2000) found that the physical and psychological aspects of a person’s job predicted pain over a 5-year period better than MRI results. If the chronic stress of a tyrant boss or conflict-filled relationships are fueling inflammation in your body, you might consider treatment that targets these root causes of inflammation rather than pursuing a traditional medical fix targeting the wear and tear that’s found on MRI.
Often the body does best when it’s left to its own devices rather than modern medicine interfering at all. You may feel like More Should Be Done, but for chronic and stable conditions or the common cold and flu, wellness is best found at home, not at the doctor. Self-care is a full time job and the goal is to get so good at it, less effort is required over time.
Activity versus Exercise: How to Cope with Pain Series
Exercise, of course, is good for you. Activity is good for you too. Both are helpful for those with chronic pain. Yet, they are different. They are not an equal substitute for the other. Let’s explain.
Patients often come to providers and, upon evaluation, respond affirmatively after being asked whether they engage in any regular exercise. When asked to describe their exercise routine, some folks go on to report various activities that they pursue through the course of their day. Still other times, they suggest that they get a lot of exercise because their employment involves being on their feet all day, such as with a retail sales associate, or engaged in other activities, such as the case of a carpenter or machinist.
Engaging in activities on a daily basis is important when self-managing chronic pain. It’s important because it fosters improved coping. The following list describes some of the numerous ways that remaining active helps people to cope with chronic pain:
- It provides a meaningful focus away from pain and focuses attention on other pursuits that have value in life
- Provides sources of self-esteem, as we tend to feel good about ourselves when we are productive in some way
- Provides sources of self-definition, as we often define ourselves by our occupation, hobbies, roles in the family
- Brings a sense of happiness and fulfillment when we pursue activities that we value
- Dispels the belief that chronic pain is a sign of injury and frailty, and instead reinforces a sense of confidence that remaining active despite pain is appropriate and healthy
The list isn’t exhaustive of all possible benefits of remaining active while living with chronic pain. However, these benefits, along with others like them, stand to reason. Who would argue that chronic rest and inactivity, along with its resultant lack of stimulation, boredom and lack of direction to one’s life, is good for anyone?
Empirical research backs up our rationally derived conclusions about the benefits of activity. Physical activity, along with its concomitant psychological stimulation, seems to change how the brain and spinal cord process signals from nerves in the body that could ordinarily be turned into pain (Naugle, et al., 2017). Those who maintain regular, stimulating physical activity tend to have less pain than those who remain passively inactive.
In another study, Pinto, et al., (2014) similarly found that higher levels of moderate-to-vigorous, leisure time activities were associated with reduced pain and perceived disability 12 months later. In other words, regular activity, rather than persistent rest, inactivity and lack of stimulation, is associated with less pain and improved coping.
Both common sense and science thus determines the truth of a standard maxim in chronic pain rehabilitation: that if you want to cope well with chronic pain, you must get up off the couch and go do something that’s stimulating, pleasurable or meaningful in some way, and preferably outside the house with other people.
Can we, or better yet, should we, count engaging in activities, such as most forms of work and play, as exercise?
By exercise, we might define as repetitive bodily movements for the purposes of improving health, or physical and emotional well-being (Cf. Howley, 2001). Common types of exercise are stretching, core strengthening and aerobic exercise. Stretching involves the extension of various muscle groups, whereas core strengthening exercises attempt to increase control of abdominal and trunk muscles over the pelvis, with the goal of stabilizing the position of the spine (Hodges & Richardson, 1996). Aerobic exercise involves continuous use of large muscle groups that increases heart and breath rates (Pollock, et al., 1998).
Of course, everyone should follow the recommendations of their own healthcare providers, as each person’s health conditions can be different. However, a common form of exercise that is typically important for the management of chronic pain is mild, low-impact aerobic exercise.
Examples of gentle, low-impact aerobic exercise are walking, biking on land or on a stationary bike, use of an arm bike, and walking or swimming in a pool. These exercises are typically mild on the joints of the ankles, knees, hips and low back. So, in this sense, they are not rigorous and so most people with chronic pain can begin engaging in one of these types of exercises for at least a limited amount of time. Nonetheless, these exercises elevate the heart rate, which is what’s important and what makes them aerobic in nature. It’s also what makes these activities into a form of exercise.
With typical daily activities, we don’t elevate our heart rate for a continuous amount of time, which is what we do when engaging in aerobic exercise. When walking on land or in a pool or when riding a bicycle, our heart rate increases and continues at this elevated pace until we stop the exercise. This continuous elevated heart rate is what makes exercise an exercise and it’s what makes the difference between activities and exercise. Activities are meaningful and stimulating and engages attention away from pain, which is all well and good, but most activities don’t elevate heart rate in the manner that exercise does.
As such, activities are not exercise.
Some form of aerobic exercise is essential for successfully self-managing pain. When done on a regular basis, it reduces pain (Hauser, et al., 2010; Kroll, 2015; Meng & Yue, 2015). Likely, it does so by the effect that aerobic exercise has on the nervous system.
When we get a good, aerobic workout, our nervous system produces feel-good chemicals that produce a mild sense of euphoria and reduce our reactivity to stimuli that might typicaly affect us. For a period of time following the exercise, we have a sense of feeling mellow and things that normally bug us don’t bug us as much. The same goes for things that might typically cause pain. They don’t cause as much pain as they usually do. In this relaxed state, our nervous system is simply less reactive or sensitive. Runners call this experience a runner’s high. However, you don’t have to run to get it. Simply walking or biking or engaging in pool exercises can also do it.
When done on a repetitive basis, you lower the reactivity of the nervous system and thereby the things that used to cause pain don’t cause as much pain or come to cease causing pain all together. The less reactive nervous system simply doesn’t react to produce pain as it once did. In so doing, you can increase the threshold for what elicits pain through the intervention on the nervous system, which we call mild, aerobic exercise. In other words, you can reduce the degree of pain you have.
There’s a couple of important things to keep in mind.
One, the mild aerobic exercise must be done on a regular basis over time. It doesn’t have the described effect if you just do it once or twice, or if you do it only once in a while. There’s no exact number to quote, but a rough rule of thumb would be to engage in some type of mild aerobic exercise three to four times weekly on a continuous basis and after a number of weeks you’ll come to see some difference in pain levels. It won’t happen, in other words, over night in a dramatic manner. It occurs in a subtle manner over time. You might not even notice it at first, but at some point you’ll have a realization that your pain isn’t as bad as it once was.
Second, when starting out, you can easily do too much and as a result flare up your pain. This experience can be unpleasant and it can come to perform double duty as the perfect rationalization to stop your attempt to begin an exercise routine. It’s common for people to say in clinic that they tried to start an exercise routine, but that it hurt too much so they stopped exercising altogether. In beginning an exercise routine, then, it pays to start out slow and with a limited amount of time for each instance of walking or biking or pool exercise. Again, there’s no hard and fast rule to follow, but a combination of consultation with your healthcare providers and common sense can go a long way. Talk with your pain rehabilitation providers and come up with a modest beginning point and slowly, over time increase the length of time that you engage in the exercise. Perhaps, at first, it’s quite modest, so modest that you might not expect much pain relief. However, you’ve got a starting point from which you can slowly increase the time or rigor of the exercise as you get into shape. Over time, you increase the exercise to a point of rigor that really does provide benefit. So, it pays to consult with your pain rehabilitation providers to find a form of mild, aerobic exercise that works for you and to be patient in getting to a point that will really help you.
As we’ve said, engaging in some type of mild, aerobic exercise on a frequent and regular basis is essential for most people to self-manage chronic pain well.
In this post, we discussed two important things that most people with chronic pain do if they want to self-manage it well. They engage in meaningful and stimulating activities and they engage in a mild, aerobic exercise on a frequent and repetitive basis. We reviewed that activities and exercise are not the same. They each provide benefit in different ways. We described these benefits and reviewed some basics to get started. We also discussed the importance of seeking consultation with your pain rehabilitation providers when getting started. Along the way, we hopefully also motivated you to do both meaningful activities and some form of mild exercise.
Is It Time to Talk About Managing Pain Without Opioids?
Opioids are certainly in the news. The US Surgeon General recently issued a statement on the relationship between their widespread use for chronic pain and the subsequent epidemics of opioid addiction and accidental overdose (US Surgeon General, 2016). The US National Institute for Drug Abuse and Centers for Disease Control have also issued concerns. Mainstream media reports on the problems of opioids appear almost daily.
After a couple of decades of strong proponents and persistent messaging on the benefits of opioids, the tide of public opinion and the opinion of health experts seems to be turning against the widespread use of opioids for chronic pain.
Among people with chronic pain who use opioids, this change in perspective on the use of opioids can be alarming. For about two decades, people with chronic pain have been encouraged to take opioid medications. Many have subsequently come to rely on them. Some may have even come to believe that it is impossible to manage chronic pain well without the use of opioid medications.
We now face a dilemma in the management of chronic pain. We have strong proponents for the use of opioids and strong proponents against the use opioids. Both sides have valid concerns that lead to their respective positions.
Often, the sides in this dilemma seem to get expressed in untenable ways. It’s as if the stakeholders in the field have to choose between two bad options: either you take opioids on a chronic basis and expose yourself to the risks of addiction and accidental overdose, which are actually occurring to people with chronic pain at epidemic proportions; or don’t take opioids, remain safe from addiction and accidental death, but expose yourself to pain, which may be intolerable. Healthcare providers seem to face a corresponding dilemma: either manage patients on chronic opioids while exposing them to addiction and accidental overdose or refrain from opioid management and expose them to what might be intolerable pain. Whether patient or provider, both options seem bad.
Is there a third option?
There is another way, of course. It’s called chronic pain rehabilitation and it effectively shows people how to successfully self-manage chronic pain without the use of opioid medications. Chronic pain rehabilitation clinics have been around for three to four decades. However, it’s hard to get people to go to them. It’s not because they are ineffective. Research over the last four decades shows clearly that they are effective (Gatchel & Okifuji, 2006; Kamper, et al., 2015).
Managing pain without opioids
People who’ve been managing their pain with opioids are often a little leery of recommendations to go to a chronic pain rehabilitation clinic. The recommendations seem to run counter to much of what’s been previously recommended throughout the long course of care for their chronic condition. After years of recommendation and encouragement to take opioids by some providers, it’s hard to understand why other providers might recommend and encourage the exact opposite. Maybe they are recommending learning to self-manage pain without the use of opioids because:
- They don’t believe my pain is as bad as it is.
- They think (wrongly) that I’m addicted to opioid medications.
- They think my pain is all in my head.
- They just want to make money off their program that they are recommending.
- They are ignorant of what’s most effective for chronic pain (i.e., they don’t know what they’re talking about).
- They are not as compassionate as the previous providers who recommended opioid management.
In all these concerns, people become leery of a recommendation to forego opioids because it’s hard to believe that the recommendation is being made in the best interest of the patient. It seems that relief of pain through the use of opioids is what’s best for the patient and anything that runs counter to that recommendation must be in the best interests of someone else.
Moreover, it’s a sensitive topic. Let’s face it, no one feels especially proud of managing their chronic pain with opioids. Rather, people with chronic pain do it because it seems a necessity – they believe that the pain will be intolerable without opioids. The recommendation and encouragement to take opioids by healthcare providers and by society, more generally, is helpful in this regard. Such encouragement supports the decision to use opioids, one in which there’s always been some ambivalence. Again, no one is exactly proud of taking opioids for chronic pain; upon reflection, there is always some degree of doubt or concern about their use that leads to a sense of vulnerability and sensitivity. It’s helpful to have others, especially healthcare providers, recommend and encourage their use.
When, however, other healthcare providers recommend against opioid use and encourage learning to self-manage pain instead, it can sting because it taps right into the inherent sense of vulnerability and sensitivity that occur when taking opioids.
It’s hard to see a healthcare provider as acting in the best interest of patients when they openly question the issue that can be so sensitive. The recommendation to learn to self-manage pain without the use of opioids shines a direct light onto the inherent sense of vulnerability or shame that so many feel when using opioids for the management of chronic pain.
The recommendation inadvertently breaks all the tacit rules that healthcare providers (and pharmaceutical companies) have heretofore been following. The rule up until now has been to reassure patients that it’s okay to take opioids for chronic pain. Over the last two decades, the field has asked patients to trust these assurances that they shouldn’t be ashamed of their need for opioid medications. Now, the field is changing and has begun to question the need for opioids. In so doing, we break the trust of patients who have been on opioids for some time: we expose them to potential pain, but also the shame that heretofore we alleviated with assurances that taking opioids is okay. It’s no wonder that patients are now upset.
In a microcosm, it’s this dynamic that occurs in the offices of chronic pain rehabilitation clinics everyday when, after the initial evaluation and recommendation to participate in the therapies of the clinic occurs, patients leave and refrain from accepting the recommendation to learn to self-manage pain. Such patients are doubtful that it will work and are afraid of the pain that would ensue if it doesn’t. Moreover, though, they tend to leave feeling somewhat ashamed that the provider so openly talked about the fact that they could learn to self-manage pain without the use of opioids. Providers are supposed to provide reassurance that it’s okay to be on opioids, not question their use.
Even when it’s well-informed and done in the best interest of the patient, the recommendation and encouragement to learn to self-manage pain without the use of opioids can be heard as a subtle yet stinging rebuke because of the inherent sensitivity that occurs when taking opioids for chronic pain.
How, then, do we bridge this divide?
The Institute for Chronic Pain has a new content page that may play a small role in such bridge building. When patients come to chronic pain rehabilitation clinics for the first time, they may have never had an experience of a provider talk to them about self-managing pain without the use of opioids. As we’ve seen, it’s a complex and sensitive interaction that occurs under the surface of the words that are spoken. It can be a lot to take in. It can feel like the rules are being broken. As we’ve seen, it can be easy to become angry and accuse the provider of incompetence, ill-will or insensitivity. Oftentimes, people need a little time to reflect on the discussion and talk it over with their loved ones. No one comes lightly to the decision to taper opioids and learn to self-manage pain instead.
The new content page provides assistance with this reflection. The hope is that patients can use the information on the page to further reflect on if and when it may be time to begin learning to self-manage chronic pain. Providers can refer their patients to the page too, ask them to read it, and come back for further discussion.
For countless people over the last four decades, chronic pain rehabilitation has provided hope and a way to take back control of a life with chronic pain. However, it must be approached with sensitivity and compassion. Initially, the idea that one can successfully self-manage chronic pain without the use of opioid medications can be threatening, especially for those who have been managing pain with opioids for some time and for those whose providers have long provided reassurance that it’s okay to take opioids. Nonetheless, if your providers have recently begun to express concerns about the long-term use of opioids or if you yourself have concerns about their long-term use, you might find it helpful to read the new ICP page on the common benefits of learning to self-manage pain without the use of opioid medications.
Article Provided By: Institute For Chronic Pain