My immune system hates me: 18 months with Parsonage-Turner Syndrome

This is a bit of a follow up to my post about quitting the gym I wrote a while back. In that post I talked about my reasoning for cancelling my gym membership and how there was more to health and fitness than lifting weights and comparing yourself to others. I neglected to mention something that happened to me that really kicked off the beginning of the end, and I thought I’d come back to discuss it now.

18 months ago I was in bed watching TV when I felt a sudden sharp pain through my right shoulder. That pain set in motion an 18 month period of extreme confusion that’s only just wrapping up as I write this. The pain lasted 2 whole days, thinking I’d torn every ligament in my shoulder I was preparing for the worst. How can I explain to my doctor that I’d ruined my shoulder while doing absolutely nothing? I’m going to sound like an idiot. And then 2 days later it disappeared. Now I thought well that’s great, no idea what it was about but glad it’s gone, but nope – the kicker is that while the pain disappeared so did any function of my serratus anterior. The serratus anterior is that funny sling muscle under your arm pit that runs down your ribs, and it functions to pull the shoulder blade around where it needs to be. That muscle had gone completely numb, and as a result my shoulder blade was left hanging out being useless – along with my right shoulder. I couldn’t lift my arm above my head, and had no idea what the was happening. I’m going through another colitis flare up and now my right arm doesn’t work properly? Just fucken perfect.

The doctor googles my symptoms, in front of me. It further confirms my suspicions that a well trained monkey could be a GP.

“I suspect you have Parsonage-Turner syndrome”.

The what now?

“Also known as brachial neuritis. Have you been in a car accident?”

Ahhhh. Nope.

“Usually you get it from severe trauma like a car roll-over or a motorcycle accident.”

Motorcycle accident… Limited mobility of the shoulder… Where have I heard that before? Markelle Fultz – the 76ers #1 draft pick that allegedly fell off a motorbike and now can’t shoot a free throw. Great, I’ve got some bung injury that everyone is laughing at this kid for – and I didn’t even fall off a fucking motorbike to do it! Turns out there’s other ways to get Parsonage-Turner: viral infections, surgical complications, vaccinations. It’s an autoimmune response, that pesky thing. Also turns out it’s super rare, and do you think any medical professional in the most isolated city in the world know how to do anything about it? Yeh you’re right, they don’t. And so begins 18 months of figuring it out myself.

I’m not going to go into the autoimmune side of Parsonage-Turner because while medical professionals know fuck all, I know even less. All I can comment on is that my immune system is a waste of space and this seems to be getting way more common as everyone I talk to has experienced it themselves or through someone close to them. There’s something happening that is making our immune systems attack ourselves and while I’m not a conspiracy nut that thinks tap water is the devil, there’s probably something in the food we eat or air we breath that is fucking us up. While I’d love to figure this one out because it terrifies me that I’m going to get more autoimmune problems in the future – it’s way out of my wheelhouse and I stuck with something I at least half know in body mechanics and physical therapy.

The prognosis for PTS is pretty grim, after a year you’re likely to have recovered as much as you ever will and there’s not a lot you can do to improve recovery. I was told this by 2 GP’s, 2 neurologists and a surgeon. I saw 3 physios who all said that they could fix it but really had no idea, one actually made it a hell of a lot worse. The basic idea for recovery was to loosen all the muscles surrounding the area, those are working overtime to try and make the shoulder function. At the same time, we’re trying to make the serratus anterior work again but doing actions that use the muscle. The problem with this is that those actions make the surrounding muscles tighter as they pick up the slack, the serratus anterior is totally unresponsive and you’re playing a cat and mouse game that goes nowhere.

I tried doing exercises at the gym and was so limited that it really killed any last remnants of motivation I had to keep my membership, that’s what I missed out on when I discussed quitting. Because my life was so hectic at the time with colitis, work and uni I actually went the opposite way and just accepted that my shoulder was cooked forever. No one could seriously help me and I had enough function of the shoulder to do my normal daily tasks that I gave up. I felt like a dickhead for giving up on it because of what I’d read about the 12 month window, I thought I should try my hardest for those 12 months but I was so dejected that I just didn’t care anymore.

12 months rolled around and I might’ve been 10% better at the most. My shoulder had started to get sore all the time because all the muscles around it were pulling it around improperly, and I was worried I was going to damage it even more. I couldn’t sleep comfortably. This is where the fun starts.

Another few months later I noticed that I could feel the serratus anterior on my right side, I could almost grab it and rub it around. When this first happened the muscle seemingly disappeared so this was a huge bit of progress. I hadn’t done any work to get it going, it was pure luck or aligning of the universe that I’d had this happen. I could lift my arm above my head to about 80% of normal and had around the same percentage of strength in the shoulder. Could it be getting better? Even if it hadn’t, this was sweet compared to what I’d given up on months ago. The cricket season rolled around and I had another crack at it, despite what I’ve mentioned about the shoulder robbing me of the one thing I was half decent at. Maybe I’ll be able to bowl normally soon. Soon came 3 months later as I write this, I’ve had a miracle.

After a long night of bowling at training I followed it up by a full spell of bowling for the first game of the season, 2 heavy sessions within 2 days of each other. A spin bowler shouldn’t be allowed to call anything a heavy session but considering the shoulder is cooked just go with it. After the game I pulled up sore in basically every muscle in my body, but noticed that my right lat and serratus were both the most sore of the lot. Hang on, the serratus hasn’t felt anything in 18 months. It’s sore. That means…..

Yep, it’s back. My serratus anterior is fucking back and my shoulder blade works like it should. It’s a miracle. Ripping my arm around must’ve given it the workout of a lifetime and jump started it for lack of more medically correct terminology. Another thing I suspect is that prednisolone has helped fix it. I was on steroids for my flare a year ago when I had some of the more prominent progress, and I’m on them now as it has got better completely. Corticosteroids are used to treat PTS in other countries, usually for chronic swelling and pain relief but maybe they work in this case too? There’s no way to know for sure but hey, I’ve got a hunch.

In other news, the fundraiser for Crohn’s and Colitis Australia is going great 3 weeks til takeoff! You can read the info and donate here. Please consider donating as all donations over $2 are tax deductible and are greatly appreciated! Money raised is going to a great charity that help our community and I’m very ready to get over there and tackle this challenge.