Hi all... I'm not new here but just wanted to provide an update. I keep this thread book marked and it's good (and unfortunate) to see the conversation continuing with more ideas. Some coles notes of random info / thoughts:
- First happened to me in 2009 at a half marathon. Great training leading up and then drove a few hours to the race, woke up the next morning (cold day) morning and went to start the race with very little warm up. Hit me around 5km in and thought it was regular cramping, so stopped, stretched and hobbled to the finish.
- Happened a couple more times in 2009 and then 2 - 3 times annually until a couple years ago.
- It happened in 2021 and I ended up finding this forum thread and took myself to hospital to have CK checked and was told I did indeed have Rhabdo
What I find are my biggest triggers (as others have said)
- Rest days after big volume (IE tapering for races sucks and causes so much anxiety)
- Travelling (sitting around)
- Over consumption of refined carbs and alcohol (IE around holidays)
- Dehydration (from alcohol consumption / travelling)
- Walking downhill down stairs
What seems to help:
- Staying active at all costs
- Staying hydrated all the time (with electrolytes and not just water)
- Never carb loading and always being mindful of carb / sugar intake
I am running the LA Marathon in a couple weeks and am stressed. It's about 10 hours of travel (2 flights + drive / public transit etc).
Hi everyone - sorry it's been a while,
I came to see if there were any updates here and it seems like I have missed out on a lot!
I wanted to specifically reply to the post above from
@NaturallyDriven . I have done lots of research and thinking of what the issue here is and have come to the conclusion that whatever throws the body's metabolical homeostasis off - being it dramatic change in nutrition, hydration, or activity levels - messes it up and results in the muscle cramps.
About a month ago, I had a very severe case of cramping in a race and afterwards my pee was dark like coke. I had never had that classic rhabdo "coke pee" before despite several cases of bad cramps and elevated CK so it really spooked me. Luckily my urine cleared back to normal very quickly and the overall output was good so I am not too concerned I damaged my kidneys... I was in a foreign country and the climate conditions were very different from what I am used to (very hot and humid). When I got back home three days later and got some lab tests done my CK was still almost 9000 and ALAT almost 300 (reference values are less than 210 for CK and less than 35 for ALAT).
I went through some very stressful events last year and since then, my symptoms have got dramatically worse. I have had these symptoms 3-4 times a year since 2020 (when I started in triathlon) but last year I had almost weekly symptoms, and also have suffered from them during my past 3 races. During the races, the symptoms begin usually immediately/very early (during the swim) and I can either partially shake them off during the bike leg or not...
During this winter, I finally managed to come up with a plan to travel without the issues: I had to keep hydrating and eating during the travels a lot more than I am used to, but that seems to be the only way I can come off the travels without seizing up the following day. I managed to do a 13h flight recently without the issue by just making sure I kept drinking and eating in frequent intervals. But then, I got messed up again 4 days after the travels on the race day. After this latest episode I tried to think really carefully what went wrong since the travels went so smoothly. So here's where I agree with NaturallyDriven: for the past three events where I have cramped up in each of them, I did a more serious carb loading protocol of 8-10g of carbs per kg of bw. Before that, I didn't take carb loading as seriously but thes past three times I cut out almost all fat and protein in my diet the day before the race and I think that really ruined me. I also agree with the dehydration - this most recent case I had I was definitely dehydrated due to the extreme heat/humidity; in another event last year I had very bad stomach issues the entire week before the race (it turned out to be covid-related...) which likely dehydrated me.
As many of you may have read from my previous posts, I have already gone through a lot of testing: ENMG, MRI, ultrasound, acylcarnitine panel, blood organic acid, muscle biopsy, rheumatological conditions; and most recently genetic testing for muscle/metabolic diseases. I am waiting for the results from the latter. I recently spoke to a professional swimmer from my country who has similar symptoms to me/us and she had been diagnosed with a rare muscle disease caused by a mutation in the RYR1 gene. I am not suggesting all of us have some rare genetic disease, but it is possible that at least some of us do. I did some reading and it seems like the RYR1 mutation is relatively common in some Caucasian populations but it is not diagnosed as often as the carrier may be totally asymptomatic... unless they try to do some extreme endurance sport. I asked the swimmer what the doctors told her to do about her condition and she said that they basically told her to stay hydrated and rest enough - good luck!
I have said this before, but it truly gives me some hope to read and hear about other people with similar experiences. I don't love that other people are hurting this way because it is the worst pain I know but what gives me hope is knowing there are other active people out there who haven't stopped doing what they love because of this. I am also determined to pursue diagnosis so that maybe I can help you guys too. I reached out to someone from this forum who wrote in years ago and they said they just quit the sport. I think that is sad and I hope there is a different way to manage the symptoms.
Lastly, I have found using AI very useful and interesting when it comes to summarizing information and understanding the concepts. I hate to say it but ChatGPT has been the best doctor I have worked with in this case so far....