Posted June 20, 2018

by Dan R.

Throughout my life, my hands have ached and popped. As a teenager, I developed the very bad habit of cracking my knuckles for relief. I thought I had arthritis even though no blood test had ever confirmed as much.

Eight years ago my knee dislocated while swinging away at a co-ed softball match. I dropped to home-plate like a sack of potatoes. My right knee was pushing my skin so far out that it looked like a tent had been erected. I couldn’t get up and the players didn’t understand what had happened. The catcher saw the dislocation, and trying to be helpful she smacked the kneecap trying to relocate it. My kneecap shattered. The umpire and catcher helped get me to the dugout. My team continued playing. All the while my knee swelled like a balloon. Eventually, they got the third out and my team returned to the dugout. They saw my leg and the pain I was fighting against and called for an ambulance.

The knee surgery pulled out tiny bone fragments while trying to reconstruct my patella. It took me an entire year of PT to get to the point where I could walk without a cane. My daughter was born days after my knee surgery. My poor wife now had two kids and a debilitated husband to care for. She was amazing.

Almost exactly one year later my left knee dislocated. I was doing an exercise at home when it popped out. Needless to say, I didn’t let anyone try to put it back in!

I had a terrible experience at the ER. They basically accused me of coming in for pain meds. The doctor asked me why I didn’t relocate it myself. I told him of my previous injury which he scoffed at and went to put my left knee back in. He couldn’t at first. I rolled while he pushed and it went back in. With all the surety of a cocky young doctor, he strode from the room in victory. As soon as he got to the door it popped right back out.

I have an amazing primary care doctor. He realized that something greater was going on with my joints. He referred me to a rheumatologist. He took one look at me and heard all the joints popping while I moved and asked me if I had ever heard of Ehlers-Danlos syndrome. I told him that I hadn’t and he put me through a series of flexibility tests. These Beighton tests verified it. I am hypermobile type.

My hands continued to plague me. The acute pain I had grown up with was continuing to get worse. I began to break the habit of popping my knuckles. Regardless, lightning pain continued to shoot from my knuckles up past my wrist and toward my elbows. To make matters worse I was now having extreme knee pain. It felt like a baseball bat was being whacked into my knees over and over and over.

The pain was changing my life. I could no longer play softball or racquetball or even run. Now I was supposed to swim and bike. Any decent level of activity resulted in a bad limp for the rest of the day. The EDS pain was also beginning to spread. It was now in my ankles and left shoulder.

I educated myself. Research on EDS, pain management, and diet. I went to conferences. I visited doctors. Slowly I built a plan to manage my life and continue to be a high-functioning individual. I started taking a medication for sleep and realized I hadn’t had a full nights sleep in years. It felt so good to sleep again! I would still wake up with tears in my eyes but no longer did my wife have huge purple bruises on her legs from where my knees would slam into her while thrashing around in the war of pain-riddled sleep.

I also got control of my pain management. After a year of trials with random pain meds and topical creams, I was able to convince my pain doctor to write permission to my primary care physician for treatment. My experience with the pain doctors was awful. They never remembered me between my appointments from month to month. They didn’t listen to my feedback on how the pain meds were working. I never felt so judged in all my life. Once my primary took over treatment things improved immediately. We dropped the meds which were playing havoc on my digestive system. I proposed changes based on my research and we did limited trials. We ended up with a plan which has kept me going for almost five years now. The secret? A mix of medication rotation with self-motivated breaks. I’m so functional again that most people don’t know that I have EDS or deal with chronic pain. Even better, I’m a present husband and father again. And I continue to outperform as a technical project manager at one of the biggest tech companies in the world.

It is really important for me to stress mental health when it comes to taking on pain management. The opioids are the real deal. I feel that I’m a very strong person mentally but it is tempting to depend on the medication as a “silver bullet”. Instead, I have to put in an effort of will to ensure that I’m taking the meds for the right reasons at the right time. I partition my meds for the week and lock the rest up. I make sure to take them as prescribed, knowing I can fall back on the breakthrough pills only as needed. Some months I need them more than others. On the “good” pain months, I let myself build a surplus and I celebrate it. On the bad months, I don’t beat myself up for taking those pills. No one’s body is the same all the time. Our stress/weight/mood fluctuates with the events of the day. It’s important not to give into stressful moments. It can make the pain feel worse. Sometimes I just close my eyes and breath through it instead of reaching for pain meds. If that doesn’t work then I feel that it is ok to take the meds. It took me a good two years of making mistakes to get to this point. I hope that you can learn from my mistakes so that you don’t have to be that person curled up on the couch in pain. I’ve been there and it leads to dark, dark thoughts. I’m happy to say I haven’t been there in more than five years now.

I’m at a point now where I have to figure out the next five years. While my pain psychologist and doctors say that I’m a model patient, the recent state of governance has made it scary for them to do their job. To make matters worse, my daughter is showing signs of EDS. This crushes my heart… the thought that my innocent, wonderful daughter will spend her adult life in chronic pain with the worry of injury. I started this journey trying to get my life under control. Now I hope to help others and create a better future for my daughter.

Thank you for reading my story.


Disclaimer: Each story submitted to The Ehlers-Danlos Society for this ‘#MyEDS/#MyHSD’ anthology is published “as-is,” with only minimal edits for spelling, grammar, and typographical mistakes. Each profile reflects the personal views, experiences and opinions of the individual authors—and, thus does not necessarily represent the views and/or endorsements, individually or collectively, of The Ehlers-Danlos Society, its leadership, staff, boards, or communities. We can also not confirm any medical claims or comments in the story.

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