The Chronic Pain Experience
What does chronic pain feel like? Maybe a better question would be what does the experience of chronic pain feel like? Not an easy question to answer. Based on my own life experience, many people think chronic pain is nothing more than stubbing your toe on the edge of a coffee table that lasts a long time. Some think that there is no such thing as chronic pain, that I’m just a big baby. There are those that think it’s all in my head, while others think all I need is a couple of Advil and an ice pack. The trouble is they might all be right; they might all be wrong. To help others understand what I go through daily, I’m going to try to answer this difficult question through my special articulation skill set. What does the experience of chronic pain feel like, at least according to the brain of Big Al?
Before we begin, let’s try and understand how the medical community defines chronic pain. According to John Hopkins Medicine, chronic pain is a “long standing pain that persists beyond the usual recovery period or occurs along with a chronic health condition, such as arthritis. Chronic pain may be "on" and "off" or continuous. It may affect people to the point that they can't work, eat properly, take part in physical activity, or enjoy life.” Even though I’m not a doctor or have a medical education, I feel confident in stating that “long standing pain” is defined as 3 months for most although there are those that believe it should be defined as 6 months. As a chronic pain patient, I believe this collection of words by John Hopkins is articulate and accurate, but it doesn’t touch on the experience of living with chronic pain.
To explore the experience of chronic pain, let’s begin with a thought experiment. Imagine you were only able to eat one normal sized meal a day. This could be a nice steak and rice dinner or maybe a pancake and sausage breakfast. Even though you can only eat one meal a day, you must continue to work full-time, workout on a regular basis, raise your kids if you have any, date your significant other, walk the dog, play with your kitty, mow the yard, read books, listen to good music, go shopping, I think you get the picture. At first you experience increased hunger, a hunger that never truly leaves your mind. As your body runs out of calories, you move into the shakes. During your one meal a day your body calms down for a while, but eventually you lose this moment of calm and are right back into extreme hunger. In addition to physical symptoms, you notice a rapidly progressing exhaustion and brain fog. Maybe the brain fog gets so bad that you forgot for a moment how to open your car door (that happened to me). Finally, after several weeks of this your body starts to physically ache like you have the flu but more intense. Your one meal a day no longer brings relief, you just ache a little less. This is your entry into the world of near constant pain.
This ache and corresponding mental state become your everyday experience or baseline. This pain is there when you wake up, go to the grocery store, hit the gym, experience an epic pow day at your local ski resort, hold hands with your partner, watch reruns of Anthony Bourdain’s No Reservations, go to work, drive home from work, etc. Queue dramatic music for a plot twist, this thought experience is not yet complete.
Once you have entered this constant world of ache, I want you to put a handful of small pebbles in both socks. Or if its winter, put some pebbles in all the fingers in your gloves then go about your day. Better yet, spread thousands of Legos over all the floors and showers in your house. In this thought experiment, the ache from hunger is designed to simulate the long-standing pain, the pebbles and Legos are designed to simulate the “on”, “off”, or continuous pain portion of chronic pain. On bad days, my rheumatoid arthritis feels like I have thousands of sharp objects attempting to destroy my hands. Just for reference, this “on” pain can last for months straight.
Welcome to my life, I’d like to welcome you to the Big Al show. This is the best way I can articulate my life as a chronic pain patient for you.
Now that we have completed this thought experiment, lets examine time. Time plays an important role in chronic pain, but it doesn’t get the attention it has earned.
For your information, there are some 120 different forms of “arthritis”. Of those 120 forms, like 80 are autoimmune based illnesses for which rheumatoid arthritis is probably the most well-known. On average, it can take between 3 to 5 years before a patient like me receives an official diagnosis. Imagine living for 5 years in a state like our thought experiment before receiving an official reason why for this pain. Also, imagine being 13 when you receive this diagnosis and realizing you will hopefully have to live with this pain for another 60 to 70 years (this assumes the patient will live to their low 80s) potentially. This is one of the reasons why I wanted to examine time. PS I did say hopefully because otherwise it means the patient died before reaching old age.
Many, if not most, people think of pain as being measured in acute time, stubbing one’s toe. Yes, it does hurt like hell now but as bumper sticks or stupid Hallmark cards state, time heals all wounds or some crap like that. Time heals the heartbreak when the beautiful barista transfers to another store on the opposite side of town (I miss you Lexi), but it doesn’t heal chronic pain. There is no healing or cure for chronic pain, only management.
For this post, I do not want to a lot of ink on the treatment of chronic pain. Please feel free to contact me directly or leave a question in the comments if you would like to learn more about my thoughts on treatment. I will say this, treatment is a controversial topic since opioids are a legit treatment option. That said, it is important to discuss treatment in the context of time.
When you enter the world of chronic pain, it is almost always for complex reasons. Since humans are also complex and chronic, this makes developing a treatment plan difficult even with the best of luck. Most treatment plans will start off with some combination of NSAIDs (Nonsteroidal anti-inflammatory drugs), Advil or Aleve or Tramadol for pain relief, physical therapy, exercise, and maybe counseling. Sometimes counseling is introduced after a few initial treatment plans have failed since it can be expensive. The larger point is that there is enough NSAIDs, Advil, and therapy combos to last for 10 years before a doctor will start prescribing stronger options like Opioids. Imagine going 10 years before your chronic pain is managed well enough that it is not the only thing consuming your mental state. 10 years before living in near constant pain becomes routine, not something that requires immediate attention or energy.
If a chronic pain patient does enter a state where stronger options like opioids are required, procedures like steroid injections, epidurals, radio frequency ablations, and other options like surgery also become possible. The major drawback to these treatment options is that they are only temporary, opioids wear off after 12 hours and some injections are considered successful if they buy a patient a year’s worth of relief (relief being defined as an acceptable level of pain, mine is a 5 out of 10 on the pain scale for example). Also, these treatment options are painful, kind of a fight fire with fire approach. Now once again, imagine knowing that the next 50 years of your life will consist of steroid injections and radio frequency ablations. Time is an important factor in the chronic pain experience.
Ok, maybe I will cause a little controversy. Contrary to what some so-called chronic pain “advocates” and “leaders” have been stating recently on the Twitters and other social media, taking opiates plays NO, I REPEAT NO, factor in determining if you are a true chronic pain patient or not. Chronic pain patients who state this are evil and will cause you more pain if you follow them. Now is a time for collaboration, vulnerability, and empathy, not some high school cool kid clique nonsense. If you honestly and genuine hurt constantly for longer than 3 months, you are in the chronic cool kid’s club regardless of your use of Advil, physical therapy, counseling, OxyContin, or steroid injections to raise your quality of your life.
In many ways, the life of a chronic pain patient is like the experience of life. Who, what, when, where and the why of our soul will be different in 10 minutes or 10 years, just like it is after the experience of life. Our illnesses might be invisible, but our experience is very much public. Whether it is wearing a bandage after a surgery, family or friends judging us for utilizing opiates for pain management or experiencing the pain of an epidural so we can experience life with a bigger smile, a life in pain can be a very visible wicked twisted road. The good news our chronic pain adventure has earned us the right to bad days, weeks or even months but we are still entitled to a great life experience.
Hopefully this post has helped you better understand the experience of living with chronic pain. I understand that this experience means everything from tying my shoe, being a friend to others, to falling in love will be difficult and challenging due to my pain levels. Pain is complex and difficult, the only way I can show respect to my condition is by working hard 24/7. I should have to work hard to keep my pain at acceptable levels, all I ask is for you to try and understand my point of view. The more you understand, the greater the likelihood of all of use designing tools that help me achieve a great life experience.
