Pain is Pain
Pain. It’s an odd part of the human experience. As I know all too well, pain hurts. In some cases, pain can severely hurt us as humans. Pain is also an educational tool. Thanks to pain, we all know we shouldn’t play with fire or that drinking expired milk is not something we should be doing. To be inclusive and fair to all, pain can be pleasurable for some from what I understand. Horrible people who belong on Criminal Minds use pain as a form of torture. Pain can also be used for discipline or punishment. And of course, there is chronic pain. Chronic pain can severely hurt me, educate me on my rheumatoid arthritis disease activity, and teach me what my poor damaged body can and can’t do at any moment. As much as I might try to trivialize pain for my own mental health, chronic pain is a dynamic and essential part of my current life today and for the foreseeable future. The million-dollar question is, how might we turn the art of my vulnerability, this blog post, into knowledge and understanding for all.
To begin with, let’s talk a little about the politics of pain. There are too many doctors and healthcare providers that believe that I should just accept that pain will be a major factor in my human experience. That if I just “accept” this fact then I won’t need medicine like opioids or steroids anymore. In addition, there are to many fellow patients and so-called patient advocates that publicly state that if you don’t need opiates to treat your pain that you don’t have chronic pain. Also, some will even go as far as to suggest that your osteoarthritis pain is not worthy of their rheumatoid arthritis pain for example. Simply put, anyone who believes any of this crap has a fundamentally wrong idea of what pain is. In my humble opinion, I don’t care if your pain comes from an injury, rheumatoid arthritis, or Crohn’s disease for example, if you are in pain then you are a brother or sister in my book. You are a fellow pain warrior! There are enough silos in healthcare already, we don’t need some high school-based pretentiousness separating us into more silos just because they want all the attention for their own patient or professional story.
Ok, I’ll get off my soap box now and start to work towards better knowledge and understanding for all.
Pain is pain. That said, there is a time component to pain which can determine what pain management treatment modal I should utilize and my definition of what quality of life means to me. For me there is acute pain, chronic pain, and lifetime-based pain. Let’s see if I can explain these for you.
Acute pain. Many of my fellow chronic pain patients will call this type of pain flares. For me, they can last a few days to several months (the longest flare I think I’ve had lasted 4 to 5 months, I believe it was caused by the trauma from my right hip replacement surgery). As with everything in medicine, this is a general rule and not a fact. With chronic pain, you are always surprised and must maintain some level of flexibility to respond to its absolute absurdity. Flare based pain includes injuries too.
The only way I know how to describe flare-based pain is like the ache of flu but much worse. I often joke that even my hair or the skin on my teeth hurt. Just thought of another example. The pain of a flare is like the ache of extreme hunger. Think not eating or drinking anything for 2 to 3 days straight. Everything just hurts and hurts bad. In addition to the pain, exhaustion is a key component because during a flare it is not uncommon for me to only sleep for 1 to maybe 3 hours a night.
Depending on the length, intensity, and location of the pain it can indicate a change in my disease. For example, an increase in the number of flares can mean my disease is getting worse. An increase in the pain in my knees can tell me that I need to rest instead of going to the gym or for a hike. Sometimes, a flare can indicate that I need to go for a walk or an easy gym session. Movement is medicine in the rheumatoid arthritis world because being static can cause a flare too.
For me treatment consists of several options. The first option is opiates. I can take up to 4 Oxycontin a day. The Oxy doesn’t cure or even lessen my pain, it makes it so I literally don’t care that I’m in pain so I can hopefully continue to work on my quality of life. A second option is some kind of work out. As a stated earlier, movement is medicine or motion is lotion in my world. Movement helps. Other options can include ice packs, heat packs, anti-inflammatory food, stress reduction, meditating, breathe work, and even blogging because it keeps my mind focused on writing and not on my pain.
Chronic pain. This is harder to describe. For me, chronic means the continuous stream of flares throughout a year. Acute pain is a flare in the moment, chronic is the 2, 3, 4, 5 flares I’ve had in the last 6 months for example.
In addition to the extreme achy feeling, chronic pain is where my mental health often will take a hit. This is the foundation for depression or brain fog. With acute pain, it is expected to end at some point, and you will go back down to your base level of pain. For me, my norm every day or base level is a 5 out of 10 on the pain scale. Acute pain is relatively easy to handle, knowing that as soon as you finish one acute pain episode that another one could start at basically at any moment is often the first step in decreasing mental health for me and too many others. Another way of stating what chronic pain is like is reaching the top of Mt. Everest and suddenly realizing you are only halfway done with the climb but are completely out of energy and motivation to continue.
In my experience, the best treatment option for me has been an extended-release opiate called Nucynta. Whereas my Oxy is designed to reduce my pain for 4 to 6 hours at a time, Nucynta slow releases in my body for 12 hours. This helps control longer term flares better than Oxy can. That said, I would argue that mediating, breathe work, and mindfulness through my studies of Buddhism has also been an excellent treatment option. These skills help me control the pain so I can get through an important meeting at work, go for a hike on a gorgeous day, or buy me enough time to drive home and not be a danger on the road (this happens to be on a regular basis). Stress can intensify a flare in a New York minute, mediating, breathe work, and mindfulness all can either reduce or manage stress which can be a pain reliever. This is why I’m so adamant that so called patient advocates do not judge those of us who use these skills in our own disease management.
Lifetime-Based pain. This is harder to quantify because we are just now studying the effects of long-term pain on our bodies and human experience. That said, I’m confident in stating that my atrial fibrillation (afib) was caused by my long-term pain. If you don’t know, I had to have 2 cardio inversions and 2 cardio ablations in a span of like 90 days. At one point during my afib episode my resting heart rate was around 170 beats per minute which also caused a fair amount of chest pain if you were wondering. I was scheduling my first heart procedure before I knew my doctors first name because of the severity of my afib.
Due to my chronic pain, sleep has become a lifetime issue for me. By issue, I mean insomnia. During a bad pain flare or mental health episode relating to my pain it is not uncommon for me to only get a few minutes to an hour of sleep in a 48 – 72-hour span. I’ve seen way too many bad 3am movies on HBO and Showtime in my life, way too many!
Lack of sleep also makes my brain fog worse. This is highly embarrassing but one of the worse episodes of brain fog that I’ve had consisted of me forgetting how to open my car door from the inside. I got horribly confused which led to panic. Luckily, I had enough awareness to open my window so I could open my car door from the outside. Once I got the door open, I realized where the inside handle was. How can I be expected to remain a functional member of society if my brain fog becomes this bad on a regular basis? This is what I mean by lifetime-based pain.
Here is the bad news. To date I have not found any treatment for this pain yet. I fully believe and advocate that exercise is probably the only real treatment for this type of lifetime pain, but I don’t have any scientific proof. Studying Buddhism is also a good idea too. If I can work out and study consistently today and tomorrow, then hopefully my afib will remain inactive and my brain fog will remain at current levels this time next year. If it doesn’t, I’m going to go from an independent functional adult to a dependent, disabled chronic patient very quickly.
Pain is pain. Pain is also powerful and dynamic enough that it can alter one’s concept of time. This means that to have a high quality of life, I must take my pain on life’s adventures and accept that boundaries are meant to be broken even though this could increase my acute, chronic, and lifetime-based pain. Most patients don’t have any trouble accepting our pain, what we won’t accept is stopping treatment with acceptance. Since pain is powerful and dynamic, it can’t be controlled by just taking an opiate for example. Patients like me need treatment modalities that help us control time too, pain like life is complex, let’s not insult it by only utilizing simple treatment ideas.
Today is the only day that matters, yesterday was easy because it is over, and I can’t predict what might happen tomorrow. Pain.
