Sunday, February 25, 2018

Adventures in Pain Management: 4 Chronic Pain Strategies

I've experienced my fair share of pain over the last 6 years. Pain is such a subjective thing, and difficult to communicate to others. I've always struggled to "rate my pain" at the hospital, often underrating it in case it got worse and we had exhausted all of our pain control options (It's happened!)  I've experienced and described countless types of pain to my medical team, using words like, "throbbing," "aching," "dull," "electric," and "sharp." I've also gotten creative with metaphors and similes in my explanations, "You see Doctor, it's like someone is stabbing my knee with a dull pencil and twisting it around...and around..and around" (sometimes you need to be dramatic!) But let's be honest, no one will ever understand how your specific pain feels, regardless of your extensive pain vocabulary. My pain accompanies an injury that is visible to others. People can see me struggling on my crutches or limping to work, and say, "Wow. It looks like you are in a lot of pain." The advantage of having a visible injury is that people tend to offer more sympathy and understanding towards your pain and your limitations. I really feel for those who have "invisible" pain, and who are constantly struggling to express the pain that they are experiencing.

Although I am not without pain today, I was able to discontinue all of my prescription pain medications around the first of January, and have not felt the need to take anything stronger than Tylenol since. This is the first time in 4 years that I have been without pain medication. I didn't stop the pain meds to be a hero or prove a point. I simply did not feel that my pain was strong enough to warrant these powerful medications that wreak havoc on my body in terms of nasty side effects. Don't get me wrong, I was very grateful for the pain meds when my body needed them - they did their job! but thankfully I have graduated to a place where the pain is presently controlled via other means. I am well aware that with this condition, Osteochondritis Dissecans, things can change quickly. The pain meds are packed away, but I will likely need them again someday, and that is OK. It doesn't make me weak. It makes me human.

Hey baby, I'm on Gabapentin tonight (wink wink)

Now I am not a pain specialist by any means, but I have had extensive experience working with Pain Specialists and Pain Psychologists, and they have been incredibly helpful. Given this experience, I thought it might be beneficial to share some knowledge and pain strategies that have really helped me.

First, just quick run-down of pain. There are 2 types of pain: 1) Acute pain and 2) Chronic Pain. Acute pain is sudden onset pain that typically has an identifiable cause. Examples of acute pain include spraining your ankle, recovering after surgery, or cutting yourself with a knife. It often resolves within 3 months. Chronic pain, on the other hand, refers to pain that persists longer than 3 months and often cannot be attributed to a specific injury. Chronic pain may accompany conditions such as arthritis, fibromyalgia, or nerve damage. Chronic pain can be very complex.

Here's an overly-simplified outline of how pain works: 1) There is stimulus (i.e. a hot stove, a needle, etc),  2) Our nerve receptors sense something,  3) The nerves send the signal to the central nervous system,  4) Our brain decides what do with that information. Number 4 is the kicker: OUR BRAIN makes sense of the information it receives and DECIDES if the pain is "Get me to the hospital I'm dying!" pain or "Calm the f down you stubbed your toe" pain. It's much more complicated than this, but you get the gist.

What I have learned is as a result of my disease, my receptors are constantly sending a signal that something isn't quite right in my body. My nervous system is working overtime! So my brain is inundated with information and often overreacts, telling me, "Call 911! You are dying!" when in fact, my knees are a little angry and just need some extra TLC. This is challenging, both physically and mentally. In the past, I have felt pain and often attributed it to something terrible happening in my body ("I think a piece of cartilage has just torn off!" Sometimes it is, unfortunately, a piece of cartilage that has torn off!). And can you guess what happens when these thoughts spiral out of control? You betcha - the pain gets worse. It can also be incredibly frustrating when the pain is intense, but there doesn't appear to be specific cause to explain why the pain increased so suddenly. This can definitely mess with your head, and make you wonder if you are entering crazy-ville.

I have worked extensively with a Pain Specialist, who has determined the perfect concoction of pain meds needed to calm down my nervous system. I have also worked with a Pain Psychologist who has helped me change my way of thinking so that my brain calms the F down and stops overreacting to each and every signal sent its way. I have found both to be very helpful and I highly recommend seeking advice from both types of professionals if you suffer from chronic pain. Prior to working with these professionals, I was sick of hearing airy fairy tips like, "think positive," "drink your greens," and "meditate regularly." I needed something more concrete. Therefore, I am sharing 4 specific strategies that really helped me with my pain control, in hopes that one of these suggestions might help someone who is also suffering from chronic pain, and to inspire those with chronic pain to seek professional help.

1) Keep Moving

I know I know! The last thing that you want to do when you are experiencing pain is to go on a long hike. I get it. But I got stuck in a rut where as soon as I experienced pain, I rolled myself up into a ball on the couch with the goal of not moving a muscle for 48 hours. Bad idea. You see, when I did unintentionally move a muscle, a signal was sent to my brain, and it sent instant alarm bells out to my body "Danger! Danger!" resulting in increased pain. I needed to let my brain know that I could move gently and it was OK. I actually set my watch for 30 minute intervals and consciously took 5 minutes to stretch gently, crutch slowly to my window, or even just do neck rotations. There was a new stimulus every half hour, the message was transmitted to my brain, but instead of freaking out, my brain said, "Oh it's just Kirstie stretching again. This is not an emergency. All is well." When my Psychologist recommended this, I humoured her by adding it to my to-do list. It sounded all a bit hokey to me. But it helped. Plus, mentally, it was good to have goals throughout the day - even if was simply to touch my toes or stretch my hamstrings.

2) Distract yourself to stop the negative thoughts

Easier said than done, right? After speaking with my Psychologist, I became aware of how my thoughts were affecting my pain. Here's how it worked for me: 1) I felt pain, 2) I catastrophized that pain, thinking, "Oh here it goes again. Something else is broken. Here comes another surgery!" 3) The thoughts became more persistent and negative ("I will probably never walk again. I may as well quit my job. I am useless!"), and 4) The pain became worse. My Psychologist helped me realize that I needed to stop the spiral of negative thoughts. I tried various meditation techniques but the one strategy that helped me the most, and I still implement today, is a mindfulness technique that I have named the "Cease and Desist" strategy. As soon as I catch my thoughts spiralling out of control, I stop and say to myself, "Stop. What do you hear? What do you smell? What do you see? What do you feel?" I take a few minutes to experience my environment and answer each question in my mind. For example, "I can hear the air conditioning unit kick on. I can see my pup sleeping on his bed. I can feel a soft pillow behind my back. I can smell a bounce sheet from the laundry," etc. For those 2-3 minutes (or however dialled in you are with your senses), I am present instead of catastrophizing my pain. I am able to stop the cycle. Plus it helps to increase my awareness of my negative thoughts. Instead of beating myself up about these thoughts, I simply think, "It's interesting that I'm having these thoughts," and quickly move on to "Cease and Desist." This simple exercise has decreased my pain and my anxiety levels. It's also a great strategy if your thoughts are interfering with your ability to fall asleep. Try it!

I am not going into surgery. They are wheeling me into happy hour and it's going to be amazing. 

3) Be Honest

No one wants to hear about how much you hurt. I told myself that repeatedly, and got to the point where I attempted to hide the pain that I was feeling. It also caused me to avoid interactions with others. Pain can be incredibly isolating. I even rejected help on a regular basis as some weird type of self preservation ("No I don't need help carrying my bag. I am doing just fine crutching with a bag wrapped around my neck, thank you very much!"). Good God! I realized, again in discussion with my Psychologist, that being honest about my pain with my friends and family was important. Now I don't think it's healthy to go on and on about your pain on social medial and to each and every person you interact with on a daily basis ("Hi cashier at grocery story. I hurt like a bitch today!"),'s important to disclose that you are having an especially rough day to those close to you. Once I became honest about my pain, I felt much better. Plus, I realized just how much my family and friends cared about me and went out of their way to offer assistance. That was helpful. Instead of passive aggressively hissing at Evan when he left a dirty dish on the counter, I found myself saying, "I'm having a shitty day with pain and I know I'm overreacting but this dirty dish is just pissing me off." He appreciated that. In addition, I challenged myself to find a few key people in my workplace that I knew I could ask for help if I needed it. Instead of struggling with bags and stairs and suffering for hours afterwards, I simply tapped my buddy on the shoulder and said, "I'm having a tough day. Do you mind giving me a hand?" Easy. It wasn't a big deal. I didn't feel like a piece of shit for asking, and I probably got an extra mile out of my knees that day. It's OK to ask for help!

4) Make a "flare-up"plan

A flare-up is a sudden increase in pain which may or may not be attributed to an event. Some people experience flare-ups when they over-do it, when the weather changes, or when they are experiencing a high level of stress. On the other hand, I can experience a flare-up with no known cause or trigger. I view a flare-up as signal overload to my central nervous system. The nerves transmit a chaotic mix of signals to my brain and my brain becomes overwhelmed with interpreting the signals. It's confused. My brain doesn't know how to attach meaning to this mess of signals so it decides to send out an alarm, "PAIN! TERRIBLE PAIN!" Ugh. My flare-ups typically feel like waves of electric shocks to my knees (good times!) In my case, a flare-up can last a few hours to days or even weeks. Flare-ups happen are often a part of chronic pain. The key is being prepared.

My Psychologist encouraged me to create a "flare-up plan." I don't recommend creating your plan in the midst of a bad flare-up. It's difficult to think straight and clearly during intense pain. Choose a low pain day to create your plan. A flare-up plan needs to consist of things that help you with your pain, so each is highly individualized, based on your personal pain and experience with the pain. There is no one flare-up plan that works for everyone.  It may include increasing or adding medications that you know will reduce the pain, but it also needs to consist of non-drug strategies that have worked in the past to reduce your pain. Sometimes a flare-up plan works beautifully. Sometimes it's not as effective. I am always tweaking my plan and adding more strategies in case I hit a wall during a particularly bad flare-up.

Flare-ups make me feel powerless, increase my anxiety, and decrease my confidence levels. Creating this plan, and having it in my back pocket when needed, has made me feel more in control of the situation and instills faith that I can cope and manage this difficult period of time. Just to give you an idea, my flare-up plan is a check-list and includes: 1) hot bath/heat,  2) 300mg Gabapentin (a nerve pain medication), 3) short walks with the dog every few hours,  4) Stretching on a foam roller, 5) Massage, 6) Asking for help, 7) Increasing sleep/rest, 8) gentle exercise in the pool, 9) Cease and Desist 10) Shots of tequila (Ha! Joking on that one. Or not. You'll never know).

Pain is a bitch and there is no doubt that it has changed the way in which I live my life. I refuse, however, to succumb to the pain and let it run my show. Been there, done that. Although pain will always be a part of me, my condition has made me realize that I am not helpless. I do have the power to control aspects of my body and mind. I have the ability to manage this pain and continue to live my life to the fullest. I hope that if you are experiencing chronic pain that you seek the help of professionals, adopt a problem-solving attitude towards pain, and take back the control.


hehe. Dat's bad. 

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