Seems like some of you guys have had similar symptoms to me, thought I would post this here to see if anyone has any thoughts on what could be causing my higher susceptibility to rhabdo. I am a cyclist and had my 1st episode of Rhabdomyolisis back in 2017(aged 20). Since then I have had it another six times with it varying in how severe its been, in the worst episode my CK level peaked at 29000 and I was put on IV fluids . I have been cycling for a long time now I started road racing when I was 14 years years old, I never seemed to have any issues when I was younger despite training as a junior up to 15 hours a week and competing in the Spanish junior national series. Since then starting when I was 20 I have had these reocurring rhabdo episodes with the pain usually confined to my quads when its at its worse, although it sometimes starts of with pain in my glutes. Every episode seems to follow a similar pattern with it often coming on after being ill and therefore not training for more than 2 days.
I did stop racing last year after ending up in hospital for the 3rd time in 12 months, but then as I enjoy the sport and cant get enough of it I made a comeback at the start of 2020. I started structured training again being more careful than ever increasing the training load slowly and making sure I had at least 2 days full recovery a week(not consecutive) and this time focused on time trials only . Thought I may have finally found a training regime I could sustain and then 2 weeks ago I fell a bit ill so I took 2 days off training, then raced a 10mile TT , 2days after that was limping with pain after walking down a road!
I have seen countless specialists with them conducting the following tests but they have all failed to provide the cause:
-Rhabdomyolysis/metabolic myopathy genetic panel analysis: Didn’t reveal any pathogenic variants. Involved ACADVL, AGL, ALDOA, CAV3, CPT1B, CPT2, ENO3, ETFA, ETFB, ETFDH, FBP2, GAA, GBE1, GYG1, GYS1, HADHA, HADHB, ISCU, LDHA, LPIN1, PFKM, PGAM2, PGK1, PGM1, PHKA1, PHKG1, PYGM, RBCK1, RYR1, SLC22A5.
-Fibroblast tritium release assay of beta-oxidation of fatty acid: Normal (excluding CPT CPT2 deficiency) from skin biopsy.
-Plasma acylcarnitine profile: Normal
-Myositis extended panel: No antibodies
-EMG test: Normal
-Non-ischaemic forearm lactate test: Normal increase in lactate and ammonia supposedly excluding glycogen disorder
Have some of you guys been able to avoid rhabdo by not having repetitive rest days and reducing carb intake during them?
Thanks,
Daniel Nieto.
I did stop racing last year after ending up in hospital for the 3rd time in 12 months, but then as I enjoy the sport and cant get enough of it I made a comeback at the start of 2020. I started structured training again being more careful than ever increasing the training load slowly and making sure I had at least 2 days full recovery a week(not consecutive) and this time focused on time trials only . Thought I may have finally found a training regime I could sustain and then 2 weeks ago I fell a bit ill so I took 2 days off training, then raced a 10mile TT , 2days after that was limping with pain after walking down a road!
I have seen countless specialists with them conducting the following tests but they have all failed to provide the cause:
-Rhabdomyolysis/metabolic myopathy genetic panel analysis: Didn’t reveal any pathogenic variants. Involved ACADVL, AGL, ALDOA, CAV3, CPT1B, CPT2, ENO3, ETFA, ETFB, ETFDH, FBP2, GAA, GBE1, GYG1, GYS1, HADHA, HADHB, ISCU, LDHA, LPIN1, PFKM, PGAM2, PGK1, PGM1, PHKA1, PHKG1, PYGM, RBCK1, RYR1, SLC22A5.
-Fibroblast tritium release assay of beta-oxidation of fatty acid: Normal (excluding CPT CPT2 deficiency) from skin biopsy.
-Plasma acylcarnitine profile: Normal
-Myositis extended panel: No antibodies
-EMG test: Normal
-Non-ischaemic forearm lactate test: Normal increase in lactate and ammonia supposedly excluding glycogen disorder
Have some of you guys been able to avoid rhabdo by not having repetitive rest days and reducing carb intake during them?
Thanks,
Daniel Nieto.