How I Cope With Chronic Pain And Disability
Someone with a herniated disc recently asked me how I cope with my spine problems and the many problems and chronic pain I suffer as a byproduct of my spine issues. I laid out my basic formula for coping and then I realized that I should probably post this in other places too, as well as expand on it with more details and examples.
My background with chronic pain
This chronic pain can be extremely invasive, interfering with my ability to sleep, concentrate, think, sometimes even just to talk and clearly communicate with others at its extremes.
There’s not much I can do about these issues, though, and pain management can only go so far before it too negatively impacts my life. So, I often do without pain management and only go onto it when things get really bad. I went through one cervical spine (neck) surgery in late 2014, which resolved my issues that stemmed from two herniated discs in my neck, but there’s still the rest of the spine to contend with at this point and there’s not a clear surgical solution for it. So, the only option is to find a balanced approach to cope with the issues for the foreseeable future until my doctors and I learn more and work out a long-term solution.
Someone else I know, who is suffering from a herniated disc, asked me how it is that I cope with all of this. This blog post is my attempt to better detail the ways in which I cope and keep my life moving in a productive direction.
If you’re not familiar with the scenario, many people who go through similar chronic pain issues will also eventually suffer chronic depression and it’s not uncommon that people eventually become suicidal. Knowing this in advance from both my own personal research and from personally knowing others who have gone through similar problems, I was a little prepared for what was to come and so I preempted some of these issues early on. Other coping mechanisms I learned over time, as the problems became more prolonged and grew in severity.
The overall coping process I have can be boiled down to a rather simple formula. This is sort of the high-level steps of how I cope with [sometimes crippling] chronic pain:
I have lost the ability to do serious hiking and trail running. I can no longer do archery. I can no longer comfortably shoot guns at the gun range. I can no longer comfortably stand in lines at Disneyland. Etc.
I don’t waste any time thinking about the things that I can no longer do. Instead, I focus on the things that I can do. Since this problem began seriously impacting my regular activities, I began replacing those activities with other activities or spending more time on existing activities that I can continue to perform. For instance, I had some guys help me restructure my garage so that I could set up a full-time lab environment to do electronics and different types of lab research (chemistry, physics). Now I am regularly working on electronics projects, repairing broken things and upgrading, modding guitar amps and pedals, etc. I spend a lot of time using my microscopes to explore bacteria and other plant matter, various chemicals, etc. I also spend more time coding, these days, and helping out other groups and organizations on a volunteer basis by providing software and data solutions. I have been getting to know my neighbors more by going on walks with them because it is no longer safe for me to go on walks by myself.
Pain is the result of neurotransmitters and their respective receptors triggering neurological responses to tell you, “something is very wrong. Stop everything that you are doing or try something different until the pain stops.” Pain is an evolutionary trait that gets the animal to change its behavior until whatever is negatively impacting the animal is ceased/addressed. Well, when there’s nothing that can be done to resolve the issue in the near term, that neurotransmitter/receptor mechanism can become overwhelming and it can significantly inhibit your ability to function as normal, interfering in your everyday life in just about everything you do. If this pain messaging goes unabated for long enough, it can result in major depression and possibly suicidal thoughts.
Left unaddressed, the long-term effects of chronic pain can impact nearly every aspect of your life. Some of the issues that long-term chronic pain can induce are:
Combating the chronic pain problem can be done with medication, but medications have their own negative drawbacks. Neurotransmitter inhibitors, like Gabapentin/Neurontin/Lyrica, broadly desensitize the synapses and, as a result, will slow you down cognitively and make it harder for you to think and remain sharp-witted. In my field, this is a non-option. I have to keep my cognitive abilities in tip-top shape. Additionally, recent research has shown that being on these kinds of drugs over a longer period of time (the most comprehensive study was of patients on the drugs for 10 years or more) have been shown to contribute to noticeable decreases in brain mass, resulting in long-term cognitive and memory capacity problems. And, if you try to go off of these drugs, the previously broadly dampened synapses become hypersensitive, causing a flood of neuronal feedback, resulting in potential seizures. The broader scope of problems with these kinds of drugs are pretty scary, too, including memory loss, blackouts and complete behavioral changes over time, not to mention a whole host of other unpleasant side effects.
Opioids, on the other hand, occupy specific opioid receptors that are naturally occurring in the brain that cause the brain to more narrowly reduce the priority of pain-related receptors. This avoids the long-term brain mass loss problem and the short-term cognitive impairment issue caused by the aforementioned inhibitors. The problem, though, with any supplemental chemical that occupies receptors is that, over time those receptors become desensitized to the quantity of chemical they are exposed to, requiring the patient to consume increasingly greater quantities of the drug over time to continue combating the pain. This increases risk of overdose and, over a longer period of time, results in the drugs less and less effective against the pain. Additionally, this creates chemical dependency, meaning that the receptors in the brain become accustomed to the unnaturally elevated levels of chemical they have been exposed to and the brain’s natural response to a chemical deficiency (if you were to stop taking the opioid) is to try to maintain the elevated levels by telling you to, “go find and consume more of the drug.” This increases the odds of the patient becoming addicted to the drug. Note that "chemical dependency" and "addiction" are not the same thing, but in most people the former can lead to the latter. Additionally, here in the U.S. there is a lot of variation in how the prescribing and regulation of opioid medication is handled, creating a lot of problem areas around retaining your prescription status. People have very suddenly been denied their renewals and been rejected the medication without warning, and this results in people seeking alternative opioids on the black market, creating an even bigger problem of drug addiction and with significantly increased health risks.
Understanding this neurotransmitter/receptor relationship and how opioids effectively “distract” the nervous system so that it stops processing pain so much, we can effectively help kill pain without taking in a supplementary drug. Other experiences of elation, joy, satisfaction, pleasure, etc, are all similar neurotransmitter/receptor mechanisms. When you complete a project that you spent time working hard on is basically the same as drinking enough alcohol to get a buzz or consuming opioids, but it’s a natural internal triggering that you can do over and over again without having to introduce a foreign drug that is poorly managed and variably regulated into your body. You still have the, “I need more” result from natural stimuli, which is why ladder climbers (success-driven people) keep breaking their own records over and over again, but in today’s world with all the options we have at hand plus the Internet, you can keep creating new projects and setting up new goals over and over again. This has the pretty much same effect on pain that opioids do, but you don’t need a prescription and you don’t have to get desensitized to one type of drug/stimuli. You can keep changing the target, project or activity to keep your brain stimulated.
When suffering from chronic pain, the neurotransmitter/receptor response can quickly cause clinical depression (not just situational depression), where your brain gets into a cycle of producing and absorbing Serotonin repeatedly, which can result in long-term depression. It's one thing to be depressed over the passing of a loved one (situational), for example, but another thing entirely to be stuck in a depressive cycle indefinitely (clinically depressed; major depression). Getting out of that cycle can be difficult. Many -- if not most -- doctors will be quick to prescribe SSRIs (antidepressants that target this type of depression), but SSRIs can be extremely problematic on their own. I am not going to go into that, here, as that is a deep subject that I could write pages on. So, we’ll keep it simple. You need to combat the depression before it happens, but even if you don’t preempt it you can still combat it naturally after the fact. Not combating it, though, it can get out of hand and unmanageable before you know it.
The best solution for preempting clinical depression is to be positive and have a sense of humor, even against all odds. Don’t obsess on the bad and the negative. Instead, try to find humor in the bad side of things, where you can laugh at the non-ideal, and celebrate the good. Can’t clean your house because you can barely move? Laugh at how messy your house is and celebrate the fact that you can laugh at it. Also, getting back to an earlier point, find a strategy where, when you can move around for a while, put one thing away or invent a system that allows you to do things more efficiently around your house without creating clutter or disorganizing things. Most of all, though, find the humor in everything and laugh freely. This can take a lot of practice, but over time you will find it easier and easier to do.
It can be hard to get your mind off of your own personal problems. This too will contribute to depression and, if allowed to occupy your mind for a long enough time, can result in clinical depression.
The best way to get your mind off of your own problems, even more so than distracting yourself with mentally challenging projects, is to help someone else out with their problem. This is part of what makes a lot of mothers so tough: Their children are their priority and their own problems can wait until their children are properly cared for. You don’t need the maternal instinct to do the same, though. You can volunteer at shelters (homeless, abuse or animal), food drives/banks, do animal/wildlife rescue, donate your skills to a cause that is important to you, etc. Find something important to you that is not about you but is instead about others or the greater population and be a part of the solution.
Having an animal in your life can be beneficial, too, especially if they're a rescue animal. You might be saving two lives by bringing a rescue into your home: The animal and yourself. An animal, particularly one that has previously experienced difficult and trying times, will be so grateful just to have someone else care about them and share their life with them. Their affection for you will be unending and they will show their appreciation for you on a daily basis. This furry (or not-so-furry) person in your life is someone you'll be motivated to care for and invest energy into, causing you to live your life not just for yourself but for someone else too, enriching your life with love, laughs and joy. This will help distract you from your own problems as well as it will make your own problems seem less significant. You'll be motivated each night by the fact that you'll have a face to wake up to in the morning, a face that won't judge you or criticize you. Having a companion who will love you unconditionally when you are in pain is a welcome thing. I have three rescue cats of my own and I'd wager that they've helped me as much as I have helped them.
Similar to obsessing over your own problems, the “woe is me, my life is horrible” mentality is a crushing one. You have to avoid thinking of your life as limited and problematic, and you need to find inspiration.
Find someone with similar or more daunting circumstances who, against great odds, has overcome or is continually overcoming their own limitations. For me, that is Jason Becker. Jason Becker has been an inspirational figure to me for decades, but especially so since my spine problems started really getting out of hand in 2012. Jason Becker was a rising star guitar virtuoso in the late ‘80s and early ‘90s, but he developed ALS and, over the span of 6 years, went from being one of the greatest guitarists of his time (1992) to being able to move only his eyes (1998 or so). Well, Jason is still alive today. His father created a system to track Jason’s eye movement and map them to letters, words and even phrases. Eventually software was made to track Jason’s eye movements and interpret them into commands. Now he authors music that is performed by numerous famous guitar virtuosos. So, that’s Jason’s life in a nutshell. What do I have to complain about? Right?
You still need to be allowed to feel your pain and process it at times. It shouldn’t be seen as though that, because someone else suffers more than you, your pain is somehow inadequate or not worth acknowledging, but it’s good to see that others who suffer more than you have found ways to not only cope but to thrive despite great adversity.
You need to prioritize what you spend your mental energy on. The effect of pain is all in the brain and the more mental energy you spend fretting over things that don’t really matter, the less mental energy you have to focus on the things that you can do something about in order to grant yourself the aforementioned rewarding sensations that help distract your brain from triggering the pain response.
If you can’t do anything about it, don’t waste your mental resources on it. Focus on the problems you can solve, not the ones you can’t solve. Don’t let others’ behavior get to you. Don’t let a driver cutting you off on the road get to you. Don’t fret over problems in foreign countries that you can’t resolve on your own. Don’t even bother wasting a minute of your mental resources on the things that are truly out of your control. This can take a lot of practice. Create reminders for yourself about this. Stick Post-It notes on your bathroom mirror, refrigerator door and other surfaces you look at on a daily basis, with messages reminding you to just let shit go. Create a nightly and daily mantra for when you go to bed and get up in the morning to remind yourself of the same message. Train yourself to focus on the things that you do have control over and to ignore that which you do not have control over.
Lastly, work hard at being positive and when all else fails, hug a non-human animal.
I hope that this information will be helpful to others who suffer from chronic pain and debilitating diseases.
My basic coping formula
- Don't obsess over what you have lost or are no longer able to do
- Expand on the things that you can do
- Keep your mind occupied with challenging subjects
- Be positive, against all odds, and continue to have a sense of humor
- Put some of your energy toward caring for others
- Find someone else who suffers more than you who is an inspiration in overcoming extreme adversity
- If you can’t do anything about it, don’t waste your energy on it
It's not about what you can't do, but what you can do
I don’t waste any time thinking about the things that I can no longer do. Instead, I focus on the things that I can do. Since this problem began seriously impacting my regular activities, I began replacing those activities with other activities or spending more time on existing activities that I can continue to perform. For instance, I had some guys help me restructure my garage so that I could set up a full-time lab environment to do electronics and different types of lab research (chemistry, physics). Now I am regularly working on electronics projects, repairing broken things and upgrading, modding guitar amps and pedals, etc. I spend a lot of time using my microscopes to explore bacteria and other plant matter, various chemicals, etc. I also spend more time coding, these days, and helping out other groups and organizations on a volunteer basis by providing software and data solutions. I have been getting to know my neighbors more by going on walks with them because it is no longer safe for me to go on walks by myself.
Keep your mind challenged
Left unaddressed, the long-term effects of chronic pain can impact nearly every aspect of your life. Some of the issues that long-term chronic pain can induce are:
- Lack of sex drive
- Food becomes tasteless or even stomach churning
- Difficulty concentrating or thinking
- Apathy
- Lack of interest in new pursuits
- Lack of interest in socializing; becoming socially isolated
- Causing other physical symptoms like digestive or heart problems
- Inability to complete projects that you start
There are many more areas of your life that can be greatly impacted by long-term chronic pain. With enough issues accumulating, it can become very daunting and depressing, which can lead to suicidal thoughts.
Combating the chronic pain problem can be done with medication, but medications have their own negative drawbacks. Neurotransmitter inhibitors, like Gabapentin/Neurontin/Lyrica, broadly desensitize the synapses and, as a result, will slow you down cognitively and make it harder for you to think and remain sharp-witted. In my field, this is a non-option. I have to keep my cognitive abilities in tip-top shape. Additionally, recent research has shown that being on these kinds of drugs over a longer period of time (the most comprehensive study was of patients on the drugs for 10 years or more) have been shown to contribute to noticeable decreases in brain mass, resulting in long-term cognitive and memory capacity problems. And, if you try to go off of these drugs, the previously broadly dampened synapses become hypersensitive, causing a flood of neuronal feedback, resulting in potential seizures. The broader scope of problems with these kinds of drugs are pretty scary, too, including memory loss, blackouts and complete behavioral changes over time, not to mention a whole host of other unpleasant side effects.
Opioids, on the other hand, occupy specific opioid receptors that are naturally occurring in the brain that cause the brain to more narrowly reduce the priority of pain-related receptors. This avoids the long-term brain mass loss problem and the short-term cognitive impairment issue caused by the aforementioned inhibitors. The problem, though, with any supplemental chemical that occupies receptors is that, over time those receptors become desensitized to the quantity of chemical they are exposed to, requiring the patient to consume increasingly greater quantities of the drug over time to continue combating the pain. This increases risk of overdose and, over a longer period of time, results in the drugs less and less effective against the pain. Additionally, this creates chemical dependency, meaning that the receptors in the brain become accustomed to the unnaturally elevated levels of chemical they have been exposed to and the brain’s natural response to a chemical deficiency (if you were to stop taking the opioid) is to try to maintain the elevated levels by telling you to, “go find and consume more of the drug.” This increases the odds of the patient becoming addicted to the drug. Note that "chemical dependency" and "addiction" are not the same thing, but in most people the former can lead to the latter. Additionally, here in the U.S. there is a lot of variation in how the prescribing and regulation of opioid medication is handled, creating a lot of problem areas around retaining your prescription status. People have very suddenly been denied their renewals and been rejected the medication without warning, and this results in people seeking alternative opioids on the black market, creating an even bigger problem of drug addiction and with significantly increased health risks.
Understanding this neurotransmitter/receptor relationship and how opioids effectively “distract” the nervous system so that it stops processing pain so much, we can effectively help kill pain without taking in a supplementary drug. Other experiences of elation, joy, satisfaction, pleasure, etc, are all similar neurotransmitter/receptor mechanisms. When you complete a project that you spent time working hard on is basically the same as drinking enough alcohol to get a buzz or consuming opioids, but it’s a natural internal triggering that you can do over and over again without having to introduce a foreign drug that is poorly managed and variably regulated into your body. You still have the, “I need more” result from natural stimuli, which is why ladder climbers (success-driven people) keep breaking their own records over and over again, but in today’s world with all the options we have at hand plus the Internet, you can keep creating new projects and setting up new goals over and over again. This has the pretty much same effect on pain that opioids do, but you don’t need a prescription and you don’t have to get desensitized to one type of drug/stimuli. You can keep changing the target, project or activity to keep your brain stimulated.
Be positive
The best solution for preempting clinical depression is to be positive and have a sense of humor, even against all odds. Don’t obsess on the bad and the negative. Instead, try to find humor in the bad side of things, where you can laugh at the non-ideal, and celebrate the good. Can’t clean your house because you can barely move? Laugh at how messy your house is and celebrate the fact that you can laugh at it. Also, getting back to an earlier point, find a strategy where, when you can move around for a while, put one thing away or invent a system that allows you to do things more efficiently around your house without creating clutter or disorganizing things. Most of all, though, find the humor in everything and laugh freely. This can take a lot of practice, but over time you will find it easier and easier to do.
Help others
The best way to get your mind off of your own problems, even more so than distracting yourself with mentally challenging projects, is to help someone else out with their problem. This is part of what makes a lot of mothers so tough: Their children are their priority and their own problems can wait until their children are properly cared for. You don’t need the maternal instinct to do the same, though. You can volunteer at shelters (homeless, abuse or animal), food drives/banks, do animal/wildlife rescue, donate your skills to a cause that is important to you, etc. Find something important to you that is not about you but is instead about others or the greater population and be a part of the solution.
Having an animal in your life can be beneficial, too, especially if they're a rescue animal. You might be saving two lives by bringing a rescue into your home: The animal and yourself. An animal, particularly one that has previously experienced difficult and trying times, will be so grateful just to have someone else care about them and share their life with them. Their affection for you will be unending and they will show their appreciation for you on a daily basis. This furry (or not-so-furry) person in your life is someone you'll be motivated to care for and invest energy into, causing you to live your life not just for yourself but for someone else too, enriching your life with love, laughs and joy. This will help distract you from your own problems as well as it will make your own problems seem less significant. You'll be motivated each night by the fact that you'll have a face to wake up to in the morning, a face that won't judge you or criticize you. Having a companion who will love you unconditionally when you are in pain is a welcome thing. I have three rescue cats of my own and I'd wager that they've helped me as much as I have helped them.
Be inspired by those who overcome great adversity
Similar to obsessing over your own problems, the “woe is me, my life is horrible” mentality is a crushing one. You have to avoid thinking of your life as limited and problematic, and you need to find inspiration.
Find someone with similar or more daunting circumstances who, against great odds, has overcome or is continually overcoming their own limitations. For me, that is Jason Becker. Jason Becker has been an inspirational figure to me for decades, but especially so since my spine problems started really getting out of hand in 2012. Jason Becker was a rising star guitar virtuoso in the late ‘80s and early ‘90s, but he developed ALS and, over the span of 6 years, went from being one of the greatest guitarists of his time (1992) to being able to move only his eyes (1998 or so). Well, Jason is still alive today. His father created a system to track Jason’s eye movement and map them to letters, words and even phrases. Eventually software was made to track Jason’s eye movements and interpret them into commands. Now he authors music that is performed by numerous famous guitar virtuosos. So, that’s Jason’s life in a nutshell. What do I have to complain about? Right?
You still need to be allowed to feel your pain and process it at times. It shouldn’t be seen as though that, because someone else suffers more than you, your pain is somehow inadequate or not worth acknowledging, but it’s good to see that others who suffer more than you have found ways to not only cope but to thrive despite great adversity.
If it's out of your control, it's not worth the mental resources
If you can’t do anything about it, don’t waste your mental resources on it. Focus on the problems you can solve, not the ones you can’t solve. Don’t let others’ behavior get to you. Don’t let a driver cutting you off on the road get to you. Don’t fret over problems in foreign countries that you can’t resolve on your own. Don’t even bother wasting a minute of your mental resources on the things that are truly out of your control. This can take a lot of practice. Create reminders for yourself about this. Stick Post-It notes on your bathroom mirror, refrigerator door and other surfaces you look at on a daily basis, with messages reminding you to just let shit go. Create a nightly and daily mantra for when you go to bed and get up in the morning to remind yourself of the same message. Train yourself to focus on the things that you do have control over and to ignore that which you do not have control over.
Wrapping up
I hope that this information will be helpful to others who suffer from chronic pain and debilitating diseases.
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