I'm another sufferer of this bizarre condition. I’m 44 and I've probably had about a dozen episodes over the last 6 years since taking up cycling and each episode seems worse. Originally it was approx. 3-4 days of pain with 2 or 3 events each day. Last one was in August 2014, which was 7 days of agony with about 5/6 attacks each day. The other difference is the first attack of an episode would typically come about after about 10 minutes of walking, whereas the last time I was hit getting out of bed in the morning. My typical cycling pattern was 30k a day 5 days a week cycle commuter, with the occasional 40k Sunday ride. Consistent with others I can pretty much guarantee an episode if I take 4/5 days break, either for illness, snow or holiday. I'd tried various physios during the period to no success.
Again as with other posters the pain is always in quads, seems to start with a knife-like pain in a muscle which then radiates within that muscle. Intense pain lasts for approx. 30-45 minutes than then recedes, but that muscle then feels sensitive for a few hours afterwards. Meanwhile at an unspecified period the next attack will emerge, usually in the opposite leg but not necessarily mirroring the same quad. I had convinced myself until last time that the same muscle wouldn’t repeatedly hurt in any given episode, but that wasn’t the case last time. However, the specific spot on the muscle from which the pain started seemed different each time.
Once I’ve had an episode, if I don’t get back to regular riding I won’t get another one. I’ve had no episodes in the period since August 2014, but I’ve barely rode 100k in total since then.
On day 2 of that last event my GP ordered bloods and these picked up CK levels c.5-6000. Since then I've been referred through two hospitals and had the electrical tests referred to earlier in the thread, all drawn a blank.
I’m now with another consultant at a different hospital who is attempting a systematic diagnosis. He's secured new baseline CK tests, bloods and an MRI scan, and so the plan is to start cycling again. In a month or two I'll get another CK test whilst cycling regularly, then ahead of my next appointment I'll take 5-7 days off the bike, which will likely trigger an episode (can’t wait) which will allow him to observe the symptoms whilst it's happening. The blood tests are looking to rule out Muscular Dystrophies.
Will post updates with any more info.
Without a diagnosis there seems to be three options:
1. Don’t ride again
2. Never stop riding for more than 2 days
3. Deal with it when it happens.
I’d love a fourth.
coldizoard, I’m hopeful we will find an explanation in our lifetime! We all know the dangers of diagnosing over the internet but my son has an unrelated but ridiculously rare allergy (1:250000) which we managed to identify through internet searching, get referred to the only expert in the UK who quickly able to confirm with a simple blood test. It saved my son years of confusion and pain. Hopefully someone will crack this and share their insight.
Again as with other posters the pain is always in quads, seems to start with a knife-like pain in a muscle which then radiates within that muscle. Intense pain lasts for approx. 30-45 minutes than then recedes, but that muscle then feels sensitive for a few hours afterwards. Meanwhile at an unspecified period the next attack will emerge, usually in the opposite leg but not necessarily mirroring the same quad. I had convinced myself until last time that the same muscle wouldn’t repeatedly hurt in any given episode, but that wasn’t the case last time. However, the specific spot on the muscle from which the pain started seemed different each time.
Once I’ve had an episode, if I don’t get back to regular riding I won’t get another one. I’ve had no episodes in the period since August 2014, but I’ve barely rode 100k in total since then.
On day 2 of that last event my GP ordered bloods and these picked up CK levels c.5-6000. Since then I've been referred through two hospitals and had the electrical tests referred to earlier in the thread, all drawn a blank.
I’m now with another consultant at a different hospital who is attempting a systematic diagnosis. He's secured new baseline CK tests, bloods and an MRI scan, and so the plan is to start cycling again. In a month or two I'll get another CK test whilst cycling regularly, then ahead of my next appointment I'll take 5-7 days off the bike, which will likely trigger an episode (can’t wait) which will allow him to observe the symptoms whilst it's happening. The blood tests are looking to rule out Muscular Dystrophies.
Will post updates with any more info.
Without a diagnosis there seems to be three options:
1. Don’t ride again
2. Never stop riding for more than 2 days
3. Deal with it when it happens.
I’d love a fourth.
coldizoard, I’m hopeful we will find an explanation in our lifetime! We all know the dangers of diagnosing over the internet but my son has an unrelated but ridiculously rare allergy (1:250000) which we managed to identify through internet searching, get referred to the only expert in the UK who quickly able to confirm with a simple blood test. It saved my son years of confusion and pain. Hopefully someone will crack this and share their insight.