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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.

I lived a rather unhealthy lifestyle during college. From the age of 18 until 20 I was eating hamburger helper and ramen, drinking 3-6 days a week, and not exercising. The doc said the exercise thing may have been my body noticing the signs and not wanting to exercise. In any case, when I was almost 21, and had my first episode, I had not been smoking for 3 months, and decided I wanted to lose the 40lbs I gained in college (I weighed about 190 at this time). I ran a mile, lifted some weights and did some medicine ball workouts with my friend who was an Illinois all-state gymnast lol. It was about an hour and a half of workout and that is rarely enough to cause rhabdo unless you have muscle atrophy (I obviously wasn't the pinnacle of being in shape, but I still wasn't obese or frail by any means).

It seems pretty crazy how the onset is generally 18-25 for these types of disorders. However, it's easy to have a good outlook when you consider children and infants who get the early onset versions generally have a worse prognosis and greater mortality rate (or so I get the impression from what I've read). In that sense, I feel quite lucky. Plus I am still able to bike and snowboard. The trick is to start small and find your trigger threshold. For disorders like mine, it seems that fast-twitch muscle work causes it. While I can bike 15 miles 3 times a week, if I lift weights for an hour or sprint in a kickball game too much I will most certainly have severe myalgia or need hospitalization. Best bet is to get your doc to authorize you to get ck tests any time, and then you can try doing more and more until you figure out what certain exercise does to your ck.

That is exactly right. And most insurance companies wont even let you get some of these tests because (as much as I would LOVE to know what I have, if for no other reason than to be able to explain it concisely to people) they truly wont improve your prognosis or benefit you directly or immediately. Great way to increase your pain threshold.

Pray you never get the biopsy. It is a real bitch.