Where Have You Been!? My Pain Journey

Two years ago I was injured; one year ago began the hardest year of my life. Let me preface this story by mentioning that I am an extremely privileged young woman. I have a loving family with resources, I am white, middle class, Canadian- born and raised on the North Shore of Vancouver. I am athletic, artistic, determined and smart. This list of my positive attributes is not supposed to make me look impressive, as posts on social media often try to do, this list is to show that even with the advantages I had, battling chronic pain tested my every last reserve, beating me several times before I clamoured back to my feet. Chronic pain is not something that ambitious type A’s can wrestle away with vigorous effort and determination- the tighter you hold on to it, the worse it gets. Imagine a Chinese finger puzzle!

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The more you try to control and micromanage pain, the worse it gets.

To begin: I have always been athletic, and always a runner. I amped up my mileage in 2013, and soon suffered an overuse injury in January of 2014. Unfortunately, the pain across the front of my knee was misdiagnosed as IT band syndrome- a type of myofascial pain affecting the band running from the knee to your hip on the outside of the thigh. Never being injured before, I wasn’t overly concerned with the fact that the physio I was doing wasn’t helping my pain. I saw 5 professionals over the span of a year, hoping that the issue would resolve itself. Continuing with life, I moved out in the Fall of 2014, to UBC, still injured and unable to cycle or run, but walking with relative ease. From the Fall to the Spring of 2015, my pain would only get worse, and my leg would continue to lose muscle as my movement became more and more limited as the months went by. After exams were over in the Spring of 2015, I drove home to the North Shore and collapsed in tears! It was too much for me to handle on my own anymore. My dad and I went to the clinic and I was put onto my first narcotic painkiller. While I wouldn’t recommend opioids like tramacet and oxycodone, they got me through some of the toughest parts of my injury, and I am extremely grateful for them.

The next 4 months were a series of confusing doctor’s appointments, misdiagnoses, and pain. We first went to see a sports medicine doctor at UBC, and he ordered a bone scan and an MRI to see if there was any physical damage. At this point I had pain all across my kneecap, and extending down my shin. The tests came back clear- everything looked fine! The doctor was mystified and diagnosed me with Chronic Regional Pain Syndrome, which is a condition where you have lots of pain, for no apparent reason. That was a real scare, and thankfully, wasn’t what I was suffering from. We got a referral for a local sports med, so he could take another look at me. Almost instantly he diagnosed me with patellar tendonitis (yay!), but was concerned by the magnitude of the pain I was in. He thought it was complicated by nerve pain, and I was put on a high dose of Gabapentin (a drug that quiets angry nerves) to calm my leg down. Unfortunately, these drugs didn’t help either, and the heat of Summer 2015 aggravated my pain and swelling so much, that in desperation, I went to the Emergency room. A kind young doctor told me some scary things about nerve pain, and I left more depressed than ever. Nerve pain wasn’t a favourable diagnosis, and is extremely hard to overcome. Often, nerve pain occurs when nerve endings are damaged, so they misfire, causing debilitating pain. It was confusing, I remember my grandmother, who is a nurse, commenting: “how do you have nerve pain?”, because I had no serious physical damage to my knee.

When the nerve drugs didn’t help, I was referred to a complex pain doctor. I hadn’t been able to walk for three months and was, instead, hobbling around. I was in very low spirits at this point, worried and in pain. Dr. Pam Squire turned out to be my angel! She took one look at me and told me that I didn’t have nerve pain, but suspected I had some micro-tears in my patellar tendon, complicated by Abnormal Pain Processing. Abnormal Pain Processing is what naturally happens to the human body when an area is injured for a long period of time without getting attention. The brain, where all pain comes from, magnifies the affected area of the body and causes a lot more pain and distress than the magnitude of the injury. In chronic pain, pain is often not an accurate indication of what is going on in the body, but that does not mean it is not real. We started a treatment of prolo therapy, a therapy often used in cases of chronic pain. Prolo therapy is when an irritating solution, sugar water, is injected into the injured area. The idea is that the therapy re-irritates that area, calling on the body’s natural resources to heal the original injury.

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For me, prolotherapy was used to heal microtears in my patellar tendon due to untreated patellar tendonitis.

As soon as I had my first round of prolo, my pain decreased. While I still could not wear pants, as the area was so sensitive, I began small walks, and started working with a kinesiologist to build back my muscle. I would have 5 rounds of prolo therapy, each round would be two weeks apart, the later rounds moved months apart.

I began school, my last year at UBC, grateful that I could walk around campus with less pain. September and October saw me start to re-enter somewhat normal life. I went to school, did homework, and worked on healing my injury through limited exercise and prolo therapy.

I thought exercising again would be fun, I had yearned for it for so long. But learning to walk again wasn’t fun, and October and November proved stressful. I hadn’t anticipated how scared I would be to move again, I kept waiting to be struck down in pain again, and felt untrusting of the professionals working with me- did they really know I would be okay? I still struggle with trust issues regarding healthcare professionals.

Chronic pain is so tough, because even if you’re on the road to recovery, pain is still there, in fact, it is guaranteed. But how do you know what is good pain, and what is bad pain? This question tortured me, especially as the pressures of school mounted, and my exercise demands also increased. In hindsight, 4th year UBC, and recovering from a pain condition were too stressful to take part in tandem. Luckily I came across the videos from Neil Pearson, a physiotherapist specializing in chronic pain. His videos allowed me to understand that to overcome pain, we must push against it, but not through it. On a walk, you can be on the edge of discomfort, and over time, exercising at the edge will lower your pain.

Okay, so pushing at the edge of pain, that makes sense. “I’m good at the physical stuff!”, I thought. But Neil doesn’t let you off the hook, he stresses that one of the most important things in pain is stress. Stress, anger, anxiety, and hyper vigilance all magnify pain. Try hyper focusing on one part of your body, does it hurt yet? Imagine having your brain involuntarily glued to a part of your body, constantly sending alert, pain signals down there. That is how many people in chronic pain live every day. Just because your pain isn’t an accurate reflection of what is going on with your body, doesn’t mean that it isn’t real, and that you aren’t feeling it. To come out of pain you have to actively train your brain to move away from the injured area, you have to exercise calmly, constantly telling your body “everything is okay”. For me, building muscle was essential to ridding myself of pain, and to build muscle, I had to exercise.

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Level of atrophy in November.

I was obsessed with my pain, every movement I took I was focussed on my left leg, reinforcing my brain’s obsession with that area of my body. I compensated, I worried, nothing I did, though I may have seemed distracted to others, could get my attention away from my leg. I found it extremely hard to go out with friends, I felt inadequate because I couldn’t do the activity that they could, that I couldn’t keep up. I protected myself from the sadness that seeing active people provoked in me, as well as the physical danger that going out and doing things put me in.

I had a hard time de-stressing, to say the least. I was super busy with this paper I was writing for my History seminar, a 15 page paper on Catholicism in 6th century Visigothic Spain, also, exams were coming up. I felt like a physical failure because I wasn’t out hiking and skiing with my friends, so I tried extra hard for A’s in school to find some sense of worthiness. At the end of exam period I was stressed, exhausted, and in pain. I was exercising, but somewhat anxiously. I was not doing what Neil asked. I went back to my pain doctor in December, and asked her what else I could be doing to help my progress. She was impressed with my activity level, permitting me to start hiking and building up my muscle. She did say, however, that the most important thing we can do to manage pain is to manage stress. The pain centre in our brain is actually right beside the emotion centre in our brain, one part of the brain can totally set off the other.

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A vicious cycle! This diagram is pertinent not only to those in chronic pain, but everyone. Notice what happens to your body when you are stressed.

 

Christmas break was nice, my activity level increased to around 15,000 steps a day, and I started going to the gym to workout my upper body and build up my atrophied leg. I was stressed, though, I really wanted to be out skiing, but I was so scared to hurt myself. I wasn’t ready, physically or mentally, but I felt so much pressure, and I wanted to be ready! School came back in session, and it started okay, but proved to be too stressful to take part in another semester. The stress of school was exacerbating my pain.

It was a hard decision to take time off school, I only had three classes left before graduating. It felt like a failure, but as i’ve been reminded by those around me, it takes a lot of courage to take time off to focus on your health. Most people were extremely compassionate, wanting to see me return to my healthy, happy and active self; others were critical, when really, I needed their compassion. However, I understood that criticism, because I am extremely hard on myself, and also, it is hard for other young people to understand chronic pain and its effects on one’s physical body and mental health.

At this point my tendon had healed, and my knee, itself, felt great. I was wearing jeans, and had been wearing my supportive knee brace a lot less. However, I still suffered from severe atrophy, and was scared to do muscle building exercises like squats. The next step of rehab was muscles, and with rebuilding muscles came myofascial pain, trigger points and soreness. Often, when muscles tense up surrounding an injury, and muscle loss happens, the muscles dysfunction and develop little “knots” called trigger points. These trigger points are very painful and refer pain to other places. It’s like tension headaches, so if you have a stiff neck, the pain is referred to your head. For me, I suffered from trigger points in my thighs and hamstrings, which referred into my lower leg.

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The blue areas are where pain is referred to, the x’s are the muscles where the pain comes from.

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Often, trigger point pain is because of tight muscles, and intramuscular stimulation, or IMS relieves the pain. IMS is when a needle is jabbed into the muscle, and the muscle releases. For me, IMS did not resolve my pain, but I spent about a month getting needled every week before I realized I had to work the pain out myself by building up muscle. February was a tough month, and when I realized how depressed I was. I was so scared of pain, feeling like a failure for dropping school, and really sick of being unable to exercise or do anything I want. I was constantly reliving the Summer, where my pain was so bad I couldn’t walk. My family had never seen me so upset, and in hindsight I realize how hard it must have been to see their usually energetic and happy daughter so upset and in pain.

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At the doctor’s office, waiting for IMS.

March saw me gradually begin to exercise under the guidance of a new physio, as well as a counsellor who addressed my fear of increased pain. There was pain, and it didn’t go away, but I exercised at the edge of it. To get out of pain, I needed to exercise. Working through my fear of pain was the hardest thing I had ever done; living in pain for two years really messed me up. I felt betrayed by my body, like it didn’t want me to live the life I want, and like the pain could strike me down at any moment. As well as exercise, I worked on calming my jumped up central nervous system using meditation and breathing. My go to coping skill was exercise, and I felt like a shell of a person without it. Developing alternate coping skills was so hard. I have spoken to several other athletic young women who have suffered injuries like this, that include being off for a long time, and they say they were also in one of the darkest places of their lives. That made me feel less crazy and alone :).

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Atrophy as of April. Most visible on my Left Quad.

April 2016 has been one of my most successful months ever, but it is still extremely hard. Rehab for an injury like this is not easy, and i’m still in pain a lot of the time, but learning to manage it. I am back at the gym, the climbing gym, and the pool. I also walk and hike every day, balancing pain and muscle building. I’m trying to work as hard as possible to have a good Summer, but I am constantly reminded that I don’t have the same energy levels as others around me, and that I can’t get out of this by trying my ass off. So much is out of my control.

What I’ve Learned:

The stigma of chronic pain has been shattered for me. Before this injury, I heard that term and thought “those people are just not tough! They are whiney”. I dreaded people judging me like that, and it caused me to isolate myself and not be honest or vulnerable with the people around me.

I also realized that it is really hard for people to understand this, especially young people. I have gained so much perspective, and I now have compassion for other people suffering from pain and health problems.

I have learned about the medical system, I have learned that not all healthcare professionals are created equal. I have also learnt that it takes time to find the right people.

I have learned how colourless my life is without activity and the outdoors. I have felt real fear of disability and uttered phrases like “I would trade in my whole University degree to have this gone”.

I have learned that chronic pain and injury is not only something that affects one’s active life, but everyday life. Everyday tasks become difficult: cooking and showering take up a lot of energy.

Through my parents I have learned how hard it is to see your children suffering.

I have learned to have compassion for others, but more so to have greater compassion for myself. I have learned to forgive myself for my mistakes, because I know I always try my best.

I have learned that natural therapies like meditation, acupuncture, and holistic medicine are not bullshit, like many denounce them to be. Our brain has an extremely important impact on our body. Oxycodone stopped working for my pain. The exercise from endorphins and relaxation from meditation worked better.

I have learned that you never know what someone has gone through when you see them on the street, everyone has a story.

I have learned to appreciate a pain-free, happy, body. If you take one thing from this, it is Never take your body for granted. Your body is beautiful and strong, take care of it and listen to it.

Why I Wrote This:

It was a big decision to publish something like this, as my story feels so personal and it makes me vulnerable. It is strange to put such a big part of yourself on the internet.

I think a big part of this is to add something genuine to the internet. I have been beaten by the FOMO (fear of missing out) stick for the past year, so I wanted to share what has really been going on with me! It’s not sexy, or cool, and it’s hard to write about.

I also wrote this as an explanation to my friends and family. I haven’t been myself, and for that, I apologize. Before going through this, I wouldn’t have known how to support a friend going through this. I’ve felt ugly, but real emotions like jealousy, anger, and sadness, that I didn’t want to spread to others. I want to be honest, and let everyone know what has been up. Sometimes I feel as though I can’t be the person my friends and family need me to be, the energetic and happy Kendall they know, until i’m back on my feet.

Most of all, I hope this post raises some awareness of what many people experience when they have a health problem. I also wanted to talk about chronic pain, and how real it is. Like I mentioned at the beginning of this article, I have had all the advantages, but still, this journey has taken me to the darkest, saddest, and most fearful places I have been. Pain is a primal feeling, it beats you down, and it’s hard to get back up.

I love everyone, and if you take the time to read this, I hope I inspire compassion and understanding. It is the toughest times that make us who were are, and it’s often not what happens to us, but how we deal with it that makes us who we are (as corny as that sounds).

Special Thanks: 

Lastly, I would not have gotten this far without the help of my pain specialist, Doctor Pam Squire, my sports med Dr. Bovard, my counsellors Sarah Hickinbottom and Lori Newell, my Kinesiologist Jordan Smith, and my Physiotherapist Jessica Owen. Thanks to my friends for your compassion, I hope it continues, and mostly, thank you to my incredibly kind and supportive family (who don’t really use social media, but I love you anyway). Mom, dad, and Quinn, I love you. Dad, I will be skiing with you next Winter.

And thank you for reading this far, if indeed, you have. 🙂

3 thoughts on “Where Have You Been!? My Pain Journey

  1. Wow Kendall. This was a real eye opener. Insightful, honest, informative, vulnerable and well written. Keep moving towards full health. See you at the campfire.

    Liked by 1 person

    1. Thank you for sharing your journey. My husband sustained an overuse injury 4 yrs ago, frustrated by differing opinions of many health professionals he is “coping” on his own refusing to consider the possibility that he may have developed a chronic pain syndrome. His pain situation has improved but now he is afraid of doing anything that may set him back so he stays at home where he is “safe”. Your story has helped me get a better understanding of what he has been going through and hopefully will
      give him incite and encouragement in his recovery.

      Like

  2. I am going to look into prolo-therapy. Thanks for sharing that and your entire journey.

    Like

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