IAmA 23-year-old male who put himself in the hospital from exercise-induced rhabdomyolysis. AMA!

The staff on your study done fucked up. Actionably badly.

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Let me get this straight:

• On Wednesday, the nurses gave you reassurances of the most likely scenario b/c rhabdo is quite rare but still raised the issue with MD at the next available time.

• On your next appointment (Friday), you saw the doctor who, again common things being common, said you were probably fine but still recommended you go to the hospital to have labs drawn for a rare but serious complication. You then went to the hospital and were immediately and correctly diagnosed.

Given that scenario, you believe everyone involved should lose their licences and livelihood?

They didn't want my labs drawn. They wanted an ultrasound to check for a blood clot which would have been another issue entirely. The hospital drew the blood because I asked them to. When I informed the research clinic that the hospital was going to admit me, the nurse said she had rhabdo a few months earlier and was able to survive on rest and water. So even then they didn't think I should be there.

Yeah I'm surprised you got that from what is a relatively mild workout. People do way more than that all the time without almost dying.

Yeah I was definitely surprised as well. I've done much more strenuous workouts before.

Look, man.

You precipitated in a research study, had very improbable and unlikely side effects, and were treated. Maybe you didn't really like the bedside manner of your nurses/doctors, maybe you're upset that they didn't take your word that something was worse than the expected outcome.

Don't nail these people to the wall, though. You were treated, and I assume your prognosis is full recovery? People want to yell and scream and shout and "stick it to the man" when something bad happens, but you'd be a much better PERSON to just work with them and understand that your case was very very unusual, and they handled it well.

If you do decide to try and get them shut down you'll be preventing this study from moving forward, stopping medical research. The study shouldn't halt because you had an extremely rare reaction (which could even be a sign that you have further health issues, and this could even help you identify them). If you try to get their "licenses revoked" you'll do nothing more than ruin the careers of some (probably) pretty good medical practitioners.

Your attitude, the way you're responding to this, is exactly why doctors are so afraid to treat people these days. It's why medical research is so slow and often times doesn't happen when it should. Please don't feed into that cycle, be a better person than that.

You're definitely right. More that anything I'm just upset that my body reacted the way that it did. To me it wouldn't even be worth the time and effort necessary to sue or do anything similar. I've kind of just accepted that I'm here in the hospital and it is what it is. Obviously I would have rather been out celebrating graduation this weekend, but nothing I can do about it now. Thanks for being more logical than I originally was.

All research done on human subjects is overseen by an ethics board called an IRB. I would encourage you to contact the IRB overseeing this research and sharing your story and experience with you. Rhabdomyolysis should have been a known potential adverse effect of this research and they should have been more proactive with their clinical oversight of your condition. The PI should be reprimanded for this oversight.

I didn't even think about this. It makes sense that they'd have to get approval to do this type of research. I'll find the IRB and contact them. Thanks for the advice!

It's unfortunate that you got rhabdo from the study, but it doesn't sound like there was any gross negligence from your descriptions. Everyone here advocating lawsuits need to chill a little.

You were part of a paid medical study. Obviously there are risks, which you were made aware of from the informed consent and hopefully whoever was there while you were filling the informed consent out. The 150 reps wasn't an arbitrarily picked number, rather, a number based off of previous academic literature about inducing DOMS. (Or it wouldn't have made it through the IRB process) From your original post, the doctor suggested going to the hospital, where a blood draw would be part of the standard battery of tests, in addition to further tests for an ultra sound. Considering you aren't showing the most classic sign off rhabdo (cola colored urine), this seems extremely reasonable, and erring on the side of caution. (Some swelling, and a pretty decent amount of soreness would be expected from a DOMS inducing study).

Your hospitalization will be filed officially in an adverse events document that will stay with the study and be submitted to the IRB. You could request a copy of this form of you want confirmation that this paperwork was done, but it likely has been, since this is taken VERY seriously in medical research.

I empathize with the fact that you are hospitalized, but expecting large quantities of money or thinking that the nurses and doctor should lose their livelihood is absurd. IMO, From your own description it sounds like they handled everything in a reasonable fashion. (I have been on the research side of several exercise/biomedical research studies, for what it's worth)

Good luck with a speedy recovery!!!

Thanks for all your insight. I definitely overreacted during some of my previous posts. Probably one of the results of just being so bored here in the hospital bed. I honestly don't expect anything but the original pay offered by the study and my medical bills taken care of.

This is a dick question, but I still really want to know:

You look like you have never lifted or done strenuous exercise a day in your life, and this is notion is supported by the evidence that you somehow got rhabdo just from doing 150 bicep curls. What exactly do you plan to do with your Exercise Science degree that a reasonable person would take you seriously in?

You are correct in that I don't lift weights on a very regular basis. I've always been a runner and that's where I get most of my exercise.

Exercise Science is a pretty useless bachelor's degree by itself. It's mostly a gateway into some sort of graduate or doctorate school. I just got accepted into Masters program for Healthcare Administration. If I had known that was what I wanted to do when I first started college, I would have chosen a different major. But I originally planned on going to Optometry school and needed a major that would fulfill all of the prerequisite classes.

TIL what rhabdomyolysis is. Get better, OP! Is the study paying for your medical expenses?

The study is paying for medical expenses. According to them, they cover everything that my insurance won't cover. Since I've got like a $6000 deductible, looks like they'll be paying almost all of it and I'll end up with free healthcare for the rest of the year by hitting my deductible in April.

According to the research company, they cover everything that my insurance won't cover

If they said this, it might mean that they wont pay your deductible for you, since your insurance would be "covering" it. You should get this clarified.

Also, drop your insurance. It's worthless. Look into government programs since you are poor.

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I had the same issue. No previous medical history or pre-existing conditions or anything.

That's a good point. Thanks for the heads up, I'll definitely look into that.

Did the hospital automatically assume you were a crossfitter?

They actually thought it was from some sort of blunt trauma like a car accident since it was so localized in one arm. Although the majority of cases that I've read about have been from crossfit.

I got made fun of a fair amount because the nurses all ask what I was studying in school and when I tell them Exercise Science, they laugh about how ironic that is.

Devin, thanks for telling your story and doing an AMA as well! Your situation sounds difficult. I have found myself dealing with the same issue and thought I could share my story to perhaps give you some insight on what it's like living with a susceptibility to acute rhabdomyolysis.

I'm Mike, a 25 year old male from Wisconsin. In February of 2011, I went to the hospital with exercise-induced rhabdomyolysis. My ck elevated to aproximately 156,000. I spent 6 days in the hospital at which point I was released and referred for testing.

The doctor I was sent to was a specialist in muscular disorders. I was given a needle electromyogram (EMG) in 9 points on the left side of my body to check for nerve issues. None found. Months later a needle muscle biopsy of my right leg was performed to test for what hey suspected was a carnatine polymitol transferase I (CPT I) enzyme difficiency (a very rare disorder that makes it difficult to burn long-string fatty acids do to a difficiency of the CPT I enzyme that binds to the fats to move them into the mitochondria where they are burned). This also yielded no diagnosis. After the results were reported, I was not referred anywhere and received no further guidance on how to proceed to live my life with this.

In the summer of 2013 I was hospitalized 2 more times. It was likely that I should have been admitted on several occasions of myagia before that, but as I had received no advice, I was uninformed of how to handle the situation. It was at this point that I went to see a Biochemical Genetic Specialist about my disorder. He was surprised that I appeared to be in decent shape and had even lost 20lbs since my first episode, despite having had such a severe case in the past. I was advised to wear a medical alert bracelet (which I will continue to wear for the rest of my life) and I was given a standing order for ck tests at my discretion at the University of Wisconsin-Madison hospital and carry an ER protocol to speed the process and inform my ER physicians (given that you can't just reserve a room for when you get rhabdo). My specialist also petitioned to have several of my genes sequenced in order to specify what type of myopathy could be causing my ailments. The claim was denied on account of rhabdomyolysis being a sufficient diagnosis (despite the fact that it is merely a symptom of a mysterious gentic disorder that I know nothing about). I had even switch health insurance to my work plan (UW employee) at his suggestion (he claimed they would probably cover it) as my parents insurance was simply giving me a runaround and never actually ruling on the claim to even see a specialist.

I have since learned to cope with this (as my support from this source also faded once the claim was declined). My most recent acute episode was last week from a kickball game, and although I did not go to the hospital, the myalgia was certainly severe enough (I know by now) to warrant a 3-4 day stint at the hospital. I have had countless blood and urine tests in the last 4 years by my primary care physicians, and even had an ultrasound once. My kidney function has never showed signs of damage (even in the hospital when my piss was black from myoglobin), indicating that my body has been resilient throughout this.

It is difficult to live with this. I was once the captain of my highschool JV soccer team, and last summer my specialist told me that I should never play soccer again (I subbed for a friends rec team and spent 4 days in a hospital for it). However I am still active and living a healthier lifestyle than I was previously. I am able to bike and snowboard (I don't know what I would do if I had to stop) without issue, thus far. I keep an online food diary every single day (myfitnesspal.com).

It can be very frustrating, but when it all boils down, the fact remains: Worse things have happened to better people, and I am lucky enough to still be alive despite this strange disorder.

TL;DR: I also have issues with rhabdomyolysis. I hope my story may help in some way, or at least be of interest to OP and others.

Wow this is definitely crazy. I've never heard of anything even remotely similar. So until the first time you were hospitalized, you hadn't had any similar problems? It seems almost surreal that something so serious can develop so suddenly after leading a healthy lifestyle as a teenager. Thanks for your story and I wish you the best! Way to have such a good attitude about it and a positive outlook on life.

I had this happen when I was 16. They just pumped me with IVs so I could continually urinate because my kidneys were failing. It was a lot of urinating.

Tell me about it! How long did you have to get pumped for? I seriously have to urinate like every 30 minutes.

Well they started with a high flow rate of IV solution and slowly reduced it. I was on IV for about two and a half days. They needed to test my urine so I would have to use a 1000mL jug they gave me. I think I urinated on average up to 700mL each time I went to the restroom.

Yeah I'm around the 600-700 mark every time as well. Did they make you wear the cuffs on your legs so you wouldn't get blood clots?

You guys are lucky, to monitor my urine output they gave me a catheter. One night a nurse forgot to empty it and I woke up having the urge to pee because the bag was so full it backed up into my bladder.

Oh that is awful!! I hope I never have the displeasure of using one of those.

I just got rhabdo a few weeks ago. I have fibromyalgia and am not super active, so when I went to the gym one day and walked on the treadmill for an hour I got rhabdo. Pretty sad, huh? I described the pain as feeling like my blood stream was on fire. Still feeling the effects almost two months later. Hope you have an easy recovery!

Wow. That's insane. I'm sorry you had to go through that.

I had the same thing from a taekwondo workout - doctors said it should never have happened. Their best guess, I had a virus that exacerbated it - like how your muscles can feel sore from a virus, I had that when I did the workout - result, four days on IV in hospital. My pee was like coffee when I went into emergency. Good stuff.

Damn that's intense! I bet you were scared when you saw that coffee colored pee.

Yea, you get past the waiting hordes at emergency fast by handing the nurse a bottle of reddish-black pee though.

Problem is, I always worry now after a big workout - is it going to happen again? I just try to never do too much if I have aches and pains from an illness, and so far so good.

The good news is, once the IV has cleaned you out there won't be any permanent damage - multiple doctors said that as long as you can still pee when you go to the hospital, i.e. your kidneys aren't totally plugged, there's no permanent damage. For the cases where they are too late, it's dialysis to the rescue.

So you're just extra careful with workouts now?

Did you notice any discoloration in your urine at any point during this ordeal?

Not as much as I would have originally thought. Is my urine clear? No, but it's not a dark brown color either. Pretty normal yellow pee.

I had the same thing happen to me twice from exercising. First time hospitalized 5 days, second 4. Now when I do I make sure I'm well hydrated & before & during the workouts. Hasn't happened since.

I think that may have been one of my problems. I definitely wasn't hydrated enough before the workout and probably should have had more to drink afterwards as well.

Lucky you caught it early, my fiancée has done it twice working out, massive back workout results in serious DOMS combined with not enough liquids to flush the broken muscle tissue out of his system.

First time he noticed it when his back DOMS pain seemed to shift and focus on his kidney area and then he started pissing blood about 3 days after his workout, wedded up in hospital with less than 5% of kidney function. They injected fluids directly through his back into his kidneys to manually flush them and wanted to put him on dialysis if there was no improvement, he improved a little and checked himself out with an instruction to pound electrolyte water.

He was bed ridden for another 2 days and weakened for almost 3 months, he couldn't consume any carbs, and had no stamina.

Second time we caught it early when his urine looked a tiny bit brown and started pounding electrolyte waters, I made him drink a fuuuuck load because it was the lack of drinking last time that landed him in hospital, but apparently you can drown from the inside out if you drink too much so that was another trip to the emergency because I had apparently attempted to drown him, he still won't let me live this down.

But, since we caught it early there was no issue from it this time, and also, the doctor insisted on checking his prostate just because "well you are here now, may as well" lol.

TL DR: drink your water kids, or your fiancée will drown you, your kidneys will fail and someone will put fingers up your pooper.

Best TL;DR ever. Luckily I avoided any sort of fingers in the ass.

So it was caused by creatine?

I never have and never will use creatine. When your muscles break down after exercise, they release an enzyme called creatine kinase into your bloodstream.

Would you handle the situation differently in the future or do everything the same?

In the future, I'd never consider participating in a research study that I wasn't 100% sure my body could handle. While it may seem like "easy money" at the time, it's definitely not worth putting your body at risk.

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The first reading showed 4,000, but 12 hours later it showed 21,000 and that was after 6 IVs. So the doctor thinks the first sample was bad. As of 20 hours ago, the number had dropped to 19,000. I'll get my blood drawn and have another test done in about 4 hours.

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Yeah I consider myself lucky for not having levels that high. I was released today after the latest test showed levels around 11,000.

I currently have recurrent rhabdomyolysis, which is the same as exercise induced rhabdomyolysis but it occurs much more frequently and from a wide variety of causes(exercise, illness, etc). My diagnosis was pretty similar to yours. When I was in the 8th grade, I had strep throat, I didn't realize this for at least a week. By the time I had realized it, the damage had already been done. My muscles were in excruciating pain and i could hardly lift my arms above my head. I then went straight to the ER where they told me that I had strep and that they didn't know the cause of my extreme muscle pain, I was sent home. By the next day, my condition had worsened, I could hardly walk, so I obviously could not go to school, after numerous trips to many different doctors over the course of two and a half weeks, I finally started to get better and I could finally start walking on my own. Over the course of 4 years, I continued to have more episodes of rhabdomyolysis, sometimes it was when I was sick and sometimes it was when I exercised. I continued to go to doctors so i could hopefully find out what was wrong with me, I even had a muscle biopsy done later in my 8th grade year where they removed a square inch of my thigh muscle. I didn't receive a diagnosis of rhabdomyolysis until my senior year of high school, that means that I spent over 4 years of my life not knowing what was going on with my body. I just wanted to let you know that I know what you are going through with the pain and frustration with medical professionals.

Thank you for your story. I'm sorry about all that frustration. Are there certain activities that you have to avoid because of your condition?

Not really, I just can't run marathons (which I never did before) and I have to limit the amount of extreme exercise I do. I also have to monitor the amount of caffeine I have because I've been having some heart issues because of my rhabdomyolysis, and I have to get an EKG done every year to make sure my heart is healthy. Basically, I am able to live life just the same as before, but now I just have to be more conscious about my body.

Well that's good. In some ways that's not necessarily a bad thing. It forces you to be more health conscious.

Came across this while sitting here with my mom, who was in the hospital with rhabdomyolysis a while back from a physically strenuous job. Her potassium level was 1.5. She was your potassium low as well?

Mine aren't that low. I think the normal range is about 3.5-5 and as of this morning mine were at 3.0.

A lot of guys get this during special operations training. They get beat down with the crazy workouts and get no time to recover

Source: I was once a special operations candidate

Does that pretty much disqualify you from completing the training and becoming as special ops officer then?

It depends on how fast you heal. I can only speak for the Air Force, but you get 2 chances to make it through. If you get injured and can't train the first time, they recycle you and put you in the next available class. If you fail a second time, you're looking at discharge or reclassifying. Officers and prior enlisted get reclassed or sent back to their previous job. Candidates straight out of basic get discharged unless making it past the 5th day of training.

Wow that's pretty harsh, but I guess it makes sense when you consider the importance of the training. You don't want some special ops guy getting rhabdo out in the field during an important mission.

Can you describe the pain, if possible ?

The pain and muscle movement is actually kind of strange and startling. Because of the massive swelling, I can only flex my arm to about 30-35 degrees and extend it to about 160 degrees. When bending my arm it feels like if I try to hard to bend it that the skin will just burst open and tissue juice squirt everywhere. At this point, I don't really have any more pain because the muscle soreness from the original exercise has gone away. What I do feel is a ridiculous amount of uncomfortable pressure in my elbow joint. Imagine someone putting a blood pressure cuff on your elbow and just constantly having it on.

Happened to me. Went to the gym with someone else and let them convince me that I needed to push harder than I should. Both arms swelled so much I couldn't even scratch my head (elbow wouldn't bend). I'm usually a hypochondriac, but for some reason I never saw a doctor. It lasted about a week. I've since had a full physical and blood work, so I know my kidneys and liver are fine. Now I tell people I'm allergic to exercise.

It's a weird feeling not being able to move your arm, isn't it?

Yeah. Mine developed about 18 hours after exercise. I was sitting in my office and a coworker noticed before I did. It progressively swelled for the next few hours and then stayed like that for a week.

Did you just drink lots of water during the recovery process?

Question: did you consume alcohol the day before, day of, or day after your 150 curls? Did the person conducting the test mention alcohol consumption at all?

Thanks

I don't drink, so there was no alcohol consumption during that time. During my pre-screening for the research study I was asked if I had consumed alcohol or drugs at any point in the last 30 days.

How heavy was the weight you were lifting?

20 lbs

150 bicep curls? As a personal trainer, that would have been a red alarm right there, for me. No one, especially one that does not engage in regular daily exercise, should be exerting their body to that degree. 150 reps is insanity, and no one should attempt that, not even a seasoned gym vet. There is a reason why exercises are structured by a predetermined number of sets. Your body needs to time to rest and recuperate, even between each one. Those "doctors" were so wrong and misinformed, I'm surprised they haven't been arrested for endangering your well-being. Don't ever do something so physically taxing ever again. I hope you get better soon!

I was surprised when I saw the amount of curls they expected as well. The first 100 were at 80% of my one-rep max and the last 50 at 60%. Sets of 10 reps with 1 minute between sets.

Ouch. I'm in the hospital myself with a severely broken femur. I underwent surgery yesterday, i'm still here and they are taking away the pain with morphine. The worst part of this is that I am twelve, and will have to miss my civics final at school. Being this young makes me heal a lot better and faster though. Good luck :)

Ouch. Sounds like you're much worse off than me. How'd you manage to break your femur? Luckily I finished my last final before I got admitted to the hospital. Best of luck to you in your recovery!

Glad you're okay OP. Also sounds like with a good lawyer you might be able to get that tuition paid for - and then some.

That would definitely be nice. It would save me from student loans.

Not so much a question, more like advice: Sue. You'd win quite easily with a good lawyer.

I thought this same thing until I read through the consent form I signed before the study. While they do agree to pay medical costs from study related injuries, they claim no liability for "pain and suffering" from such injuries.

Those waivers carry nowhere the weight they profess to. Call a personal injury attorney anyhow. You don't have to seek a zillion dollars compensation, but the medical bills related to this should be covered, as well as compensation for actual damages.

There is a sub - /r/legaladvice who would be happy to give you general information on your options.

Best of luck to you! And congratulations on graduation!

Thanks! I'll definitely check that out!

Wouldn't there be a difference between say a torn muscle from exertion and a potentially fatal condition which they negligently ignored?

You'd think so right? The information packet they gave me talked a little about the extremely minute possibility of developing rhabdomyolysis, but I didn't have any of the obvious symptoms they listed (dark urine, nausea, vomiting, etc.)

If you ended up with damaged kidneys and required dialysis or a transplant, would they have to pay for that as well?

I would imagine so. At this point, I'm planning on them paying for everything on this current hospital bill.

You cannot generally exclude liability for personal injury, at least in the UK. Hence I would urge you to look up the applicable laws on exclusion clauses.

Also, you would likely be suing for damages under negligence, not for breach of contract.

As in negligence for care and treatment of the injury once it occurred?