The other day my sister sent me a text. She said “literally your doctor has to be sitting behind me. He’s talking about a patient that took her first spin class then had the worst case of rhabdo he’d ever seen.” And that text is what sparked the idea to share the following TRUE story.
It was the end of June 2015 and I was rushing from work to get to a Soul Cycle class. I had never taken a Soul Cycle class before but since I had been running a lot I thought I’d switch things up a little. I got to class feeling fine and things started off normal. During the class I felt a little weird and sore, but assumed that was because this wasn’t a workout I was used to and carried on. I went to sushi after class with a friend of mine then went home, watched some TV, and went to bed. Sounds normal, right? Well, fast forward to 5AM and I was in EXCRUCIATING pain. I’ve never had a child but I imagine this was close to what having a child with no drugs would feel like. I couldn’t move my legs, I was sweating (maybe because we didn’t have AC), and I was convinced I was paralyzed. I realize how dramatic this is, but just wait. It gets better.
I was in so much pain and positive I was going to die. I decided to go to my sister’s where there was AC in hopes that if I did die, someone would be there to maybe call 911 or at least call someone to take my body away once I go. The problem though was that I lived in the basement of an apartment and the steps to get upstairs were incredibly steep and narrow and I couldn’t bend my legs. Again, sounds dramatic but imagine trying to bend a Barbie’s knee to a 90 degree angle. You can’t because she doesn’t have joints. That’s how mine were. It took me maybe 5 minutes to get up the 8-12 steps and I can’t remember if I cried doing it, but I probably did. I was MISERABLE.
The pain didn’t end there though because I had to make it into my car. At the time I was driving a Ford Escape and I had to climb into the driver seat, I couldn’t just fall into it. And remember, I couldn’t bend my legs without screaming bloody murder. Somehow I found a way to slide into the driver seat and set it all the way back so my legs could stretch out straight. I drove the 10-15 minutes to my sister’s, parked my car, went inside, and laid on the couch to try and cool off.
I didn’t even tell my sister I was coming because at this point I was so uncomfortable and in so much pain I didn’t have the energy. Naturally, she thought someone was breaking in but nope! Worse, it was her younger sister writhing in pain, sure she was dying. I don’t remember how the next couple hours played out, but I think she went to back to bed and I tried and failed to sleep a little. It felt like someone was pulling my muscles apart, stabbing them with pins, and pouring scolding hot water on them all at the same.
A couple hours later I called my mom to tell her what was going on. We were going to a Zac Brown Band concert at Fenway later that night so upon hearing the news that her daughter was “dying” she came into the city a little earlier to see what exactly was going on.
I sat in a reclining chair for the majority of the morning because laying down was too hard to get up and down. When my mom came, she looked at my legs and was immediately concerned. Spoiler alert: they were HUGE. My thighs had swelled to triple their original size. It was absurd. My mom was CONVINCED it was lactic acid build up. She said lactic acid so many times that day it’s now a running joke in my family whenever someone says it. I’m not kidding, she said it probably 100+ times. I’m not sure if she was trying to convince me or herself that that’s all this was.
This next part gets a little graphic so bear with me or skip to the next paragraph, but it’s a crucial part of the story. Later in the day I started to notice that my pee was brownish. To be honest, I didn’t think much of it because I was so focused on my legs that I couldn’t be concerned with anything else. A normal person might think the two are related, but not me. One thing I did learn from this whole experience though is if your pee is ever a weird color, go the ER immediately. In this case, I obviously did not.
I didn’t want to miss the concert so we went. I couldn’t bend my legs enough to get in the car so we walked. Yep, walked. About a mile. A very slow, painful, awkward looking walk. But we made it. Since it was at Fenway and we were in ballpark seats, I stood most of the concert or tried to sit with my legs stretched out. It was a great concert but a physically uncomfortable one to say the least.
That night I still couldn’t get comfortable and barely slept. Next day, same thing. The following day was Monday and I didn’t have any vacation or sick days at work yet so I went. I walked a mile there and back. That night I had tickets to a Red Sox game with my dad and sister. And, you guessed it, walked again! For someone complaining of severe leg pain you must be wondering how I did it all, and I don’t really have an answer. All I can say is, very slowly.
If you’re still with me – Ill try to speed things up.
This week happened to be 4th of July so on Tuesday night I was able to go home early and have a few days off work. Over that span of time my mom had talked to my aunt and told her all my symptoms. Then my aunt told my cousin who called my mom and told her it was Rhabdo and that people die from it. At this point, my mom called my doctor to make an appointment (because the hardest part of adulting is making your own doctor’s appointments). My doctor said I should go to the ER immediately, so reluctantly on my end, that’s what my mom and I did. This was 5 or 6 days after the actual class.
We went to the ER and the doctor asked if I was starting to feel better and I said yes, which was true. He told me to drink lots of fluids and I should be fine. Thank goodness for moms because she remembered that my PCP said I should have blood taken. My mom asked the doctor if he was going to do blood work and he essentially said something along the lines of, “I guess”. They did blood work, told me they’d call the next day with results, and sent me on my way.
I went home thinking everything would be fine and I’d just have to drink a lot of fluids. Well, that was NOT the case. They called the next day and said I had to come back in because my CK (Creatine Kinase) levels were off the charts. Literally. The test didn’t go as high as my levels were. To give you some insight, the number should be below 100 for me, I can’t remember the specific range, and the test went up to 2,000. Doing some simple math here thats at least 1,900 above normal.
When I went back the next day the doctor said I had to be med-flighted (flown?) to Boston and asked which hospital I preferred. Since the doctor the previous day showed absolutely zero concern, you can imagine how upset I got. This was news to me and incredibly scary. The word dialysis, admitted, and days in the hospital, were thrown around and I was overwhelmed. I’d never had anything like this happen to me before and I felt like people were talking around me and about me instead of to me which is incredibly frustrating. Another doctor came over and asked why I was upset and I lost it. She had no idea the other doctor said I had to be flown to Boston because this was too much for a Cape Cod hospital to handle. She told me I’d be in the hospital a night maybe two and be fine. At this point I was scared, overwhelmed, angry, sad, and confused. Basically, I was feeling all the feels.
I was admitted to the hospital under the impression I’d be there about 1-2 days max. As you may have guessed, that’s not what happened.
[Disclaimer: I’m not a medical professional so my explanation is based on what I was told] You may be wondering what exactly was wrong with me, so here are the basics. I had rhabdomyolysis. This is when your muscles break down and enter your blood stream. I learned this is common for people who do crossfit but can also happen if you overwork muscles and are dehydrated, or have a crush injury, among other things. My case was kind of a fluke. My muscles were breaking down so rapidly that my organs couldn’t filter it out fast enough. My kidney levels were abnormal which apparently meant they were essentially starting to fail, which is how people can end up on dialysis from this. Once your kidneys fail, everything else can start to go and in extreme cases patients die.I am very lucky I didn’t have to go through dialysis or worse. Once I was admitted, my doctor tried to stress to me on more than one occasion that it was essentially a miracle that I was feeling fine and alert and didn’t get compartment syndrome, which would have been treated by slicing open my thighs top to bottom. If you want to know more about that, Google fasciotomy. He stressed how serious this was but since I had started to feel better, I didn’t really believe him and brushed off his concerns. Apparently I shouldn’t have because he was right. This was very serious and in retrospect I should have been a little more pleasant than I was. This was one of the worst cases he or any of the nurses had seen or heard of and the fact that I was able to make it through the previous 5 days without major complications was astonishing to them.
I spent four days in the hospital on fluids. I was a miserable patient, frustrated with the whole situation and honestly, very scared. I asked to go home A LOT and on the third day my doctor ended up getting frustrated with me and in a very stern voice told me he didn’t suggest it and said that I’d be leaving against medical advice and would have to sign the form. On the fourth day, I did leave. He still didn’t want me to, but I couldn’t be there anymore. I was exhausted. My CK levels were still very high when I left the hospital and I had to promise to drink 6L of fluids a day and get my blood taken every couple of weeks for the next couple of months. About 2-3 months later, my levels were back to normal.
Long story short, I’m incredibly lucky. This all could have been so much worse and I’m forever thankful that it wasn’t. Not that many people know about rhabdo but I think more people should. Something that could have cost me my life could have been just as easily avoided if I sought treatment sooner. So, listen to your body, listen to your mom, and if your pee is ever discolored, definitely go to the ER.