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Extreme quadriceps starting pain after 3-4 rest days

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Feb 17, 2016
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Funnily I have been thinking about dropping a post on here (but haven't wanted to jinx myself...here goes...).

It's been a year since my last episode, and I've concluded the absolute key (as reported up thread) has been to avoid more than a couple of consecutive days off.

At times that's been an absolute inconvenience (family, holidays, illness, work, travel), but I can vouch that it appears to be the way to keep the episodes at bay.

For clarity, I'm talking at least 45 mins minimum (generally an hour) at recovery / Z1 pace, generally on a turbo trainer; I have had the odd day where I've not done anything but have made sure it's just the one. Diet is generally good, but I have a very sweet tooth and have succumbed to sugar binges which haven't brought on an episode so long as I've kept riding (I don't think I've ever combined one of these with a day of no riding though).

I'll repeat, it can be a royal inconvenience. However I've returned to (very very modest level) amateur racing and have decided it's the price to pay to not have up to 2 weeks of enforced time off due to this condition.

Just wanted to get this out there as this thing is such a pain (literally) and I like that we have this little self-help community.
 
Aug 26, 2016
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I'm sorry to see another couple newcomers to this discussion thread. But, strength in numbers, yeah? :)

To everyone else who's continuing to battle this, soldier on, dear sir/madam, soldier on! :)

Had an interesting thing happen in the last couple days. I went out for a long-ish walk where the quads did flare up, as i had expected. Went for a higher intensity rides than usual (i suspect i bumped up the intensity too quickly) for 3 days, last ride on the day 3 days prior to the current bout. However, after gingerly walking home, i jumped on the trainer to test the legs as i have never actually tried to ride when this happens. And it seems i was able to ride with no problems! This seemed a bit contrary to what others have reported stating that they couldn't ride when a bout has started.
I should be on day 2 of the most recent bout but i managed to complete two 20km trips without many problems, going at average pace, for me.

This got me wondering about posture and bike fit, and whether how well we are fitted to our bikes would engage different muscles. Has anyone explored this?
 
Mar 5, 2016
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I'm a 300km a week commuter, and suffer from the same symptoms as the rest of you triggered in the same conditions (historically, walking down stairs after the first ride following the weekend break). I figured out that taking ibuprofen as soon as possible after the symptoms started would stop the extreme pain, and although it was still uncomfortable up to 72 hours later, I could go about my business as normal. A blood test showed highly elevated CK levels, but this was normal because of my exercise intensity, frequency and duration (5 on, 2 off).

I sought help from a sports physio about 6 months ago, who after a few sessions, could trigger the attack by manipulating the muscles in my mid-thigh. He's not sure of the detail of what's going on, but indicated the ibuprofen worked because it reduced the swelling in the muscle group. He advised regularly and quite harshly working my Vastus Medialis muscle with a hard roller after every ride, I've not had a repeat.

Your mileage may vary, but I've gone from have pretty regular, debilitating attacks to zero - so far.
 
Sep 10, 2017
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jb001e9634 said:
I've just had these symptoms and spent last night in hospital on an IV. My CK was over 10000 when tested on Tuesday morning. I had pain Thu/Fri last week which worsened on Sat & Sun. I rode 3 times the weekend before but not in the week. It was warmer than it had been for a while that weekend and I was probably dehydrated.

My diagnosis was this https://en.m.wikipedia.org/wiki/Exertional_rhabdomyolysis .

There's further info here https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3031324/#!po=72.9167
When I was discharged my CK had dropped to circa 6000 overnight after fluids to flush my kidneys and I have a retest early next week to check progress.

I still have some mild symptoms and stiffness but nothing like the weekend. I did try and ride at the weekend but like lots have commented only rode a few 100 meters and pretty much had to walk home. No doubt attempting to ride probably made matters worse.

If this accurate it is muscle damage which takes longer than DOMS to appear and the up to 5 days aligns with the amount of time it took my pain to start and the period many are seeing as 'not riding time's before problems start.

There isn't a solution once it starts it seems except treating the elevated CK levels to remove it from the body and protect the kidneys. The main thing appears to be managing things to prevent an issue in the first place.

Also interesting:
http://www.athleteinme.com/ArticleView.aspx?id=241

http://watchfit.com/general-health/injury/effects-of-rhabdomyolysis/

http://bmjopensem.bmj.com/content/2/1/e000151

One of the things I'm unclear on is why the pain happens in the same place at the same time most of the time - as though the legs are connected somehow?
Hello all. I have just come out of hospital following a Rhabdo episode. I commute to work which is a c. 110 mile per week commute, i am 47 and at a good level of fitness. In my case i had been pushing hard, going as fast as I could and really using the daily commute as hard physical training. My own CK was 15k intially, rising to 22k before then dropping back towards a more normal level. Currently awaiting a neural consultant referral as the hospital were concerned about the delay between exercise and onset of symptoms, which in my case was c. 72 hours later. I also did not experience dark urine, and have subsequently read that this is not always present with Rhabdo. My legs are very weak now, struggling to walk to the end of the road, but early days and am expectign to regain full fitness. Thankfully seem to have avoided kidney damage, but a very frightening, painful and unpleasant experience. Everyone has their own threshold, and i will now be diong much more mild exercise, not try to race and really avoid pushing myself too hard to avoid another episode. Safe cycling to all. If you experience significant pain in hour quads, make sure to rehydrate alot and if the pain is prolonged, get a blood test to rule out rhabdo.
 
Mar 4, 2018
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Re: likewise

TWilsonChicago said:
Count me as another victim of this syndrome. It is a condition so odd and apparently rare that this thread is absolutely the only reference to it I have been able to find anywhere.

Here are my particulars: If I take a few days off the bike after a period of frequent moderate-to-intense cycling, I can expect to eventually experience very sharp, localized muscle pain, mostly in my quads, but not always. And not the whole area, but localized spots within the muscles, with the pain coming on and dissipating in different spots at different times and with varying intensities, up to and including intensities that can prevent me from moving at all.

If the time off is 1 or 2 days, no problem. At about 3 days off, the pain will occur when I start pedaling again. Usually, if I can spin through it enough to get warm, it will eventually go away, or reduce to a manageable ache. If I'm off the bike for 5 days, I'll start having these pains even off the bike, just walking. For me, they never last more than a day or so.

If the training before the time off is more moderate, then the pain is reduced or never happens. Severity seems to be a function of how hard I was riding before the time off. The delay interval seems to be consistent, though, independent of the severity.

I first experienced this in my late 30s, during a period of frequent hard riding. I'm 60 now, and as I've gotten more serious about riding again over the last couple years, this problem has returned.

My best guess is that it is a by-product of the muscle repair process at the heart of exercise adaptation. It seems to happen at a certain phase of that process, but only if the area hasn't been 'worked' during the period between the damage and the repair. Maybe a doctor or physiologist can make something out of that.

Definitely doesn't seem like a nerve issue or a skeletal issue, or even an injury. It's really all happening in the muscle, and not in one spot.

Good to know I'm not alone. Someday someone will figure this out and our questions will be answered. In the meantime, the best practice seems to be: Don't stop riding.

-Tim
This post is a long way out of time but I also have actually taken some heart by all your posts. I have had this occur a number of times. On one or two occasions I was able to ease off and work my way into a ride, complete the rides but with some residual leg pain after the ride. Once or twice I have gotten off the bike, stretched and been able to continue. The key in all these cases was that I was able to ease up or get off the bike as soon as the pain started.

The pain is not in a particular muscle, I have had it start in the glut (one), in the quad. I have had in in both legs. As others have suggested it feels initially like a cramp but for me quickly moves to a stabbing pain where bending the leg (not pushing) is extremely painful. I also have issues in these circumstances walking down stairs.

I had the issue again today (Sunday) where I lined up for a 170 km ride and almost from the first rev started having stabbing pains. I struggled on for 7 kms and gave up. I had been training for this event quite intensely but had not been on the bike since Tuesday.....so exactly as everyone is reporting

I think someone mentioned not stopping. I think that is correct. More stretching and better recovery from intense training I hope is the answer.

Sympathies to all suffering. It is really annoying. Thanks for the above, I found the articles helpful.

Regards, Jeremy
 
Mar 12, 2018
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Wow, can't believe I found this post and that others experience the same issues. Here's my history:

-riding 15 years, some hard years, some easy. Never experienced pain like this before.
-43 y/o. Recently started riding more as I seem to be getting stronger with age, starting to race again.
-FTP = 4.35 watts/kg measured on trainer
-First experience with this extreme quad pain was 1.5 month ago when I took a one week break. After taking 3 days off, I was just sitting at my desk, stood up and zap, my right leg was completely hosed. The pain felt like my muscles were on fire. Hurt to stretch. Worried something was seriously wrong.
-After lots of stretching, it continued to hurt. The next day I was fine and did a mellow ride. About 30 minutes in it hit again and had to stop. Somehow after 10 minutes I was able to ride it out without too much pain. The next day I was back to normal, like nothing ever happened.
-The pain has returned during a 2 week business trip to Asia. I was actually ok in the first week with zero riding. At day 7 off the bike the pain hit in both legs at the same time, just walking around. I'm currently limping and can barely walk. The pain is about an 8/10 with 10 being a broken bone. I can barely make it down stairs and look rediculous limping around.
-I did a hard group ride before this trip. But I've done plenty of hard rides prior to traveling or taking time off before without issue.
-As I'm overseas right now, I'd be checking into an ER had this not happened before. I almost thought it was a blood clot the first time... the pain is just so severe and strange. The first time this only happened in my right leg. This second time it happened in my left leg, and the right followed about 15 minutes later.

This makes no sense. It's not a cramp or normal muscle soreness. It comes on hard and is debilitating. I'm going to re-read everyone's post to see if there are any other common causes than just "riding hard and taking 3+ days off". Is this an age thing? Fitness level? Flexibility issue?
 
Jun 23, 2017
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Hi again,
I'm not back to give a cure, but maybe something that will help...

This is for a specific scenario:
- You've had time off bike (lets say 5 days)
- You're about to jump on in the "hope" that you don't feel the pain

Ok, so jump on and start pedalling as per normal warm up..

As soon as you feel a small niggle (you all know what i mean - DON'T wait, this has to happen AS SOON as you feel it), up you're wattage dramatically - to well over threshold.

(to give you an idea, i warm up at around 1.5-2.0 w/kg. I would start riding around 4-5 w/kg.)

Pain should go away for a short period, but you will still probably start feeling the pain again.

As soon as you do - 'stop pedalling completely/dont move pedals/stand up on pedals' and coast for about 20 seconds.

Then straight back into interval type sprint at above threshold. stop/stand again if you feel pain.

Keep repeating this...

You'll tire out, but ive found it stops me from getting the pain. You can usually do a normal(ish) ride after that

Next day you'll be completely OK again..

Let me know if you try this and it works.

REALLY bad warm up i know but hey, if it works.....
 
Apr 13, 2018
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Hi.

Not having read all post´s, similar might have been posted before ?

I also have had problems with quads cramping badly after few days off my bike, so I started searching the web for possible solutions, and fell over an answer from someone named Steve Hogg to a person asking about quad cramps, which solved it for me;

If the main focus of the cramping is down the centreline of the quads and above the knee it is reasonably certain that you are sitting too far forward and too high.
Cramping in the centre of the quads is usually the rectus femoris which is the only quad the crosses the hip joint making it a hip flexor as well. The cramping above the knee usually indicates overextension which is common when people sit too far forward
After lowering my saddle 5mm and moving it 7mm backwards, I have not had any quad cramps since. :D


Maybe this could help others too..
 
Apr 13, 2018
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Hi.

Not having read all post´s, similar might have been posted before ?

I also have had problems with quads cramping badly after few days off my bike, so I started searching the web for possible solutions, and fell over an answer from someone named Steve Hogg to a person asking about quad cramps, which solved it for me;

If the main focus of the cramping is down the centreline of the quads and above the knee it is reasonably certain that you are sitting too far forward and too high.
Cramping in the centre of the quads is usually the rectus femoris which is the only quad the crosses the hip joint making it a hip flexor as well. The cramping above the knee usually indicates overextension which is common when people sit too far forward
After lowering my saddle 5mm and moving it 7mm backwards, I have not had any quad cramps since. :D


Maybe this could help others too..

EDIT:
It´s stil same saddle height for me (when measure "BB->middle of saddle"), I just ended up with more setback which felt like there´s less load on Quads and engaging hamstrings more...
 
Feb 29, 2016
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Re:

beejay1188 said:
Hi again,
I'm not back to give a cure, but maybe something that will help...

This is for a specific scenario:
- You've had time off bike (lets say 5 days)
- You're about to jump on in the "hope" that you don't feel the pain

Ok, so jump on and start pedalling as per normal warm up..

As soon as you feel a small niggle (you all know what i mean - DON'T wait, this has to happen AS SOON as you feel it), up you're wattage dramatically - to well over threshold.

(to give you an idea, i warm up at around 1.5-2.0 w/kg. I would start riding around 4-5 w/kg.)

Pain should go away for a short period, but you will still probably start feeling the pain again.

As soon as you do - 'stop pedalling completely/dont move pedals/stand up on pedals' and coast for about 20 seconds.

Then straight back into interval type sprint at above threshold. stop/stand again if you feel pain.

Keep repeating this...

You'll tire out, but ive found it stops me from getting the pain. You can usually do a normal(ish) ride after that

Next day you'll be completely OK again..

Let me know if you try this and it works.

REALLY bad warm up i know but hey, if it works.....

Thanks for the suggestion. Will give it a go amongst the other things I use.
I have also found instead of double dosing on painkillers etc I use a standard dose along with a high quality Curcumin supplement which is a proven natural anti inflammatory. Really works for me when I feel an attack coming on. I take them together about half an hour or an hour before I ride. FYI I use these https://naturespurest.co.nz/shop/longvida-optimised-curcumin.aspx

Cheers
 
Feb 24, 2015
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beejay1188 said:
Hi again,
I'm not back to give a cure, but maybe something that will help...

This is for a specific scenario:
- You've had time off bike (lets say 5 days)
- You're about to jump on in the "hope" that you don't feel the pain

Ok, so jump on and start pedalling as per normal warm up..

As soon as you feel a small niggle (you all know what i mean - DON'T wait, this has to happen AS SOON as you feel it), up you're wattage dramatically - to well over threshold.

(to give you an idea, i warm up at around 1.5-2.0 w/kg. I would start riding around 4-5 w/kg.)

Pain should go away for a short period, but you will still probably start feeling the pain again.

As soon as you do - 'stop pedalling completely/dont move pedals/stand up on pedals' and coast for about 20 seconds.

Then straight back into interval type sprint at above threshold. stop/stand again if you feel pain.

Keep repeating this...

You'll tire out, but ive found it stops me from getting the pain. You can usually do a normal(ish) ride after that

Next day you'll be completely OK again..

Let me know if you try this and it works.

REALLY bad warm up i know but hey, if it works.....

This works perfectly. I usually get the pain in both legs when I walk downhill (several days after my last ride). When the pain sets in, I get on my bike and ride the steepest hills I can find, full power. I do this several times and it hurts as hell, but the next day all pain is gone and I'm good. But the best way to avoid the pain for me is to only rest one day. So if I have a resting-week on my trainingplan, I still go out every day and ride Zone 1 for an hour. I always stay in hotels that have a stationary bike. This is just how I have learnt to live with this problem.
 
May 1, 2017
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This is a shot in the dark but could possibly shed some light on what is happening to all(most?) of us. A few months back I paid for the 23andMe genetic testing. Once you get your results back, you can download the raw data and then run that data through other websites (big databases with all of the latest genetic research) that give reports for different medical related stuff. One of these is https://www.promethease.com/

One the of the things that popped up on mine: "susceptibility to malignant hyperthermia (MHS) You may be at higher risk for a bad response to anesthetics."

MHS is really bad. You can die if given gas anesthetics or succinylcholine (commonly used drugs for surgery). I'm not an expert in this but a negative reaction to these drugs involves a release of calcium by the muscle cells, which causes the muscle cells to contract. If all of your muscle cells contract at the same time, it doesn't take long for various forms of damage to be done. http://www.mhaus.org is a good source to learn more. I now wear a RoadID necklace with information about this, in case some kind of accident puts me in the hospital and I'm not conscious.

MHS is linked to other things too, according to the mhaus.org website: namely, recurrent heat stroke and/or rhabdomyolysis after exercise. There is other literature out there that possibly links MHS to exercise related muscle pain. The paper linked below suggests MH symptoms could be triggered by excessive exercise.
https://link.springer.com/chapter/10.1007/978-4-431-68346-9_20

My hypothesis: There is a link between my MHS status and this crazy muscle pain. Somehow, a relatively mild MH-like reaction is happening after I take a couple days off. I suspect that the crazy muscle pain is actually doing some fairly severe muscle damage and that if we did a blood test immediately after one, our CK levels would be high. If MHS is the cause of this stuff, it would be really important for all of us to know. If you are MHS, your kids have a 50% chance of having it.

To test my hypothesis, is there anyone on this forum that has had DNA testing done? I know 23andME and Ancestry.com will let you download the raw data. It would interesting to see if anyone else on this forum comes back as MHS positive.

Disclaimer: I'm not an expert and have no medical education. The research behind this stuff is relatively new. There is a list of known gene variants for MHS but there are very likely others that have yet to be discovered.
 
Feb 17, 2016
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[quote="But the best way to avoid the pain for me is to only rest one day. So if I have a resting-week on my trainingplan, I still go out every day and ride Zone 1 for an hour. I always stay in hotels that have a stationary bike. This is just how I have learnt to live with this problem.[/quote]

This is 100% me. A couple of months ago I came perilously close to an "attack" after 48 hours off the bike, but managed to just about keep it at bay by getting on the bike just in time (I could feel the "acid" (or whatever) rising but it never went nuclear); otherwise I've managed to keep it completely at bay by real careful management. It can be an incredible inconvenience though, especially with holidays, and thankfully my missus is a saint.


[quote="One the of the things that popped up on mine: "susceptibility to malignant hyperthermia (MHS) You may be at higher risk for a bad response to anesthetics."[/quote]

I'd be interested in giving this a go, just to help test your hypothesis. Which test did you do? The Health and Ancestry Svs or just the Health one?

Then was there any cost for the further analysis?
 
May 1, 2017
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[quote="I'd be interested in giving this a go, just to help test your hypothesis. Which test did you do? The Health and Ancestry Svs or just the Health one?

Then was there any cost for the further analysis?[/quote]


I used 23andMe. You don't need to pay for the health report. You can just by the ancestry test and then download your raw file (a huge test file with your full DNA sequence). Running that raw file through promethease.com cost $12. I'll be interested to hear your results. Thanks!
 
Apr 12, 2009
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Drewza101 said:
Hypothesis
- the issue is an enzyme related issue in the muscles specifically related to the production of glycogen synthase.
- glycogen synthase is the enzyme which is responsible for converting glucose into glycogen for storage in muscle cells.
- in a "normal" person, during high load, levels of glycogen synthase increases in order to store fuel to meet the increased requirement for energy for the body. When exercise load decreases, the body automatically regulates the level of this enzyme as the body's need for stored glycogen reduces.
- the theory that we are working with is that in my case, the body is not regulating this enzyme level, and so the body is continuing to convert glucose into glycogen and packing it into the muscle cells.
- the problem is twofold in that firstly exercise has stopped and so the glycogen is not being used (but continues to be stored) and sugar and carb intake has not reduced (and often increased) so there is excess in the body and it is being stored.
- the theory is that the muscle cells get overloaded with glycogen and when exercise is introduced, the cells literally tear as a result of being overloaded.
- this accounts for the pain felt, as well as the increased CK levels.
- the hypothesis is that this is a genetic issue and there isn't a "cure" as such
I've got this StabbyLeg / LegAIDS problem, have had a few bouts over the years. Normally in reasonably heavy training that suddenly stops, often for a holiday that involves flights and/or lots of boozing, although I know other people who are non-drinkers that get it.

It's an interesting theory and I'm excited to try low-carb holidays to see if it makes any difference, but why does the problem only seem to happen to quadriceps if it's a whole-body muscle glycogen enzyme? Also, how come running up the stairs doesn't trigger the issue but gingerly walking down stairs will? That does seem to match the theory.
 

jsk

May 25, 2016
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barnes21bb said:
To test my hypothesis, is there anyone on this forum that has had DNA testing done? I know 23andME and Ancestry.com will let you download the raw data. It would interesting to see if anyone else on this forum comes back as MHS positive.
Interesting theory. I ran my 23andMe results through promothease, and when I search the report for malignant hyperthermia all the results that come up are green/good in my case.
 
Dec 31, 2018
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Drewza101 said:
Hi all
I've had a number of episodes of this issue and have been working with my coach (Phd with focus on sports science and genetics) and some sports doctors, and have come up with a hypothesis as to what is going on:

Onset of the condition in my case:
- relatively high training / racing load
- 3-4 days of inactive rest
- normal / increased carb and sugar intake during the training load, and importantly no moderation /and often an increase in carb and sugar intake immediately during the rest period (ie pigging out a bit post a stage race / big block, or at least not reducing intake during this period)

Manifestation
- pain as described above, in quads, calves, hammies, abductors, glutes.
- importantly the fact that during an episode the pain moves around (anterior, posterior, right leg, left leg) indicates that this is not a nerve/skeletal issue
- significantly increased CK levels indicating some for or myopathy
- CRP levels normal indicating that it isn't an autoimmune issue

Hypothesis
- the issue is an enzyme related issue in the muscles specifically related to the production of glycogen synthase.
- glycogen synthase is the enzyme which is responsible for converting glucose into glycogen for storage in muscle cells.
- in a "normal" person, during high load, levels of glycogen synthase increases in order to store fuel to meet the increased requirement for energy for the body. When exercise load decreases, the body automatically regulates the level of this enzyme as the body's need for stored glycogen reduces.
- the theory that we are working with is that in my case, the body is not regulating this enzyme level, and so the body is continuing to convert glucose into glycogen and packing it into the muscle cells.
- the problem is twofold in that firstly exercise has stopped and so the glycogen is not being used (but continues to be stored) and sugar and carb intake has not reduced (and often increased) so there is excess in the body and it is being stored.
- the theory is that the muscle cells get overloaded with glycogen and when exercise is introduced, the cells literally tear as a result of being overloaded.
- this accounts for the pain felt, as well as the increased CK levels.
- the hypothesis is that this is a genetic issue and there isn't a "cure" as such

Prevention and treatment
- active rest as opposed to inactive rest has been effective in preventing onset (ie. 90 minute low intensity sessions with not more than a day of inactive periods).
- significant reduction of carb and sugar intake as the rest period starts
- during the most recent episode I went into a LCHF (virtually carb free) diet and within 2 days had no more pain
- during the episodes, multiple, short (10-20min) sessions until onset of pain, with aim of stimulating metabolism and effectively burning off glycogen
- once pain had subsided, introduced low intensity IMTG rides for the first few sessions.
- use of ibuprofen to assist with inflammation in Muscles and for pain during the episode
- increase water intake to assist kidneys with CK load

As I said, this is a theory that the guys i am working with have come up with and it seems to make sense and be working for me. I'm sharing it with you simply because I know the frustration and the pain associated. If (and hopefully we don't have another episode given our prevention strategy) we have another episode, we will need to do a muscle biopsy to test the theory - obviously invasive so would prefer to avoid!!

Once again, this is a theory - hopefully it helps!!
Hello All
Finally have got around to posting after dipping in and out of this forum over a few years. I'm posting to let you know what has worked for me in managing this, and to point newcomers to some of the posts that I've found most useful. This is the only forum I've found that disucsses this in any detail, yet, asking around, it seems it is not uncommon.

First to be clear, I'm talking about what I think most are referring to here, covered in detail in earlier posts. In brief: debilitating muscle spasms/seizing up throughout quads, typcially occuring after periods of rest (e.g. especially 'extreme' rest when travelling) and often triggered by eccentric excercise. Extreme pain; can lock up legs entirely so cannot bend knees; not typical cramps (magnesium supplement no help); certainly not DOMS; those who've had it measured report high levels of CK; muscle damage and pain can persist for days after an event.

I strongly recommend taking the time to trawl though the many posts here. I've found useful posts by Drewza101, BJ1188, Shayne_G (who had a lot of meidical invetigations), to name a few. What Drewza101 says aligns with my experience; i.e. this appears to be a problem with over-storage of glycogen in muscles (perhaps that same as 'tying up' in horses: https://ker.com/equinews/managing-tying-up-in-horses/ ?)

My last episode followed 2 days rest (driving) after consistent period of cycle commuting (low mileage <120 km/wk), eating junk, then going for a run, not warmed up (attempting to keep up with my too-fit sister). I could barely walk for 10 days, and any stepping down trigger new attacks. I eventually broke out of it, following advice of some earlier posters, by:

1. Taking high doses of anti-inflammatories (Ibuprofen 800 mg, four times daily), starting two days before excercising again (3, below).
2. Fasting over three days (attempting to deplete glycogen stores): Day 1 some fat and protein, nil, repeat nil, carbohydrates. Days 2 - 3 nil food.
3. Jumping on bike and, with no warm up, cycling at maximum sustainable effort up hill for as long as I could endure, then spin to recover and repeat for about 20 minutes. Continued with 30 min hard riding on the flat. Then solid short daily rides until back to normal.
4. Weeping for joy (almost).

How to manage it? Again, what Drewza101 says. Key seems to be to maintain some degree of glycogen depletion (I find a low carb healthy fat diet highly beneficial, but not sure yet if it helps ith this).

Stopping cycling works, long-term: Last year, prior to a 4-week trek in Nepal, fearful of being incapacitated there, I stopped cycling and, a few months before the trip, eased into long walks, starting on the flat, then some easy runs for. At first, I experienced leg cramps even on descents, but gradually these eased (avoiding striding out on descents helps) and was able to do the trek with no problems at all.

Never stopping cycling also works. i.e. I find never having more than 2 days off seems to help. Trouble is, the more cycling fit I am, the more prone I am to this.

I'm working on trying to build both cycling and running fitness to see if that helps/gives me an alternative if I cannot cyle. I find that, currently, even when cycling regularly, eccentric quad excercise (e.g. running downhill) tends to trigger it. Anyone have experience with this?

What does not work: Gently easing into exercise doesn't help me - I got it after an 18 km barely trying ride - I'm guessing because this does not deplete glycogen. Massage seems to trigger it, not relieve it. In earlier days, I tried magnesium supplmentation which made no difference (which makes sense if it's a glycogen over-storage problem).

My brother, also a cyclist, suffers from identical symptoms. There may be a genetic predisposition?

I hope this is helpful.
 
Jul 7, 2015
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White male, 39 y/o. First post here in 4 years. I gave up cycling last year because my frequent travel schedule made it impossible to avoid episodes, which have increased in intensity and frequency with age. I switched to running. Training for a marathon at present (30 miles/ week) and experiencing the same thing. I mitigate it with copious amounts of Gatorade, especially on off days, and a high carb diet. I basically keep it under control and will go months without severe pain. That said, the pain from running has not yet been quite as bad as what I experienced cycling (7/10 vs 9/10). Based on comments here and some journal articles, I tried low carb last year with disastrous results and some of the worst pain I've experienced (lasting about 3 weeks).

I've had multiple MRIs, nerve conduction testing and genetic testing - all at HSS is NYC. I'll have a muscle biopsy next month but am not optimistic.

My symptoms (and likely yours if you're reading this) are more or less consistent with CPT II. My genetic test was negative, but my neurologist proposed that perhaps a diagnosis simply does not yet exist for what I have. MCT oil does not seem to be effective. Gatorade - that disgusting sugar syrup that comes in a short list of hideous flavors - works like magic. I buy it in bulk and mourn the forthcoming death of my young teeth.

As a side note, the first episode of Diagnosis on Netflix deals with CPT II and makes for some hard watching, despite the melodrama.

Thanks all.
 
Feb 17, 2016
89
1
2,685
@pasaglia - just to be clear, you're not saying that you think it's CPT II, but rather that the symptoms are consistent with it?

In your original post (07th July 2015) you say "Sorry to say it is recurrent rhabdomyolysis. Could be dangerous if not properly managed - treatment being hydration". Do you no longer think it's rhabdomyolysis?

Sorry to hear you've been suffering with this too!
 
Sep 5, 2019
1
1
15
Had second episode starting yesterday. Excruciating pain in quads and I know pain as I was gun shot in chest and stabbed on another occasion 23-25 years ago. This quad pain is right there on par when part of my liver was chopped off, diaphragm was damaged and lung was punctured by the bullet.

First episode was in 2015 when I was visiting family overseas which lived in apartments on third floor. Every now and then I would take stairs to go downstairs and would have to literally sit down on stairs as I couldn't move. This was after intense cycling for a few weeks and then no workout due to vacation travel.

Second episode just occurred yesterday after 3 days of rest and no workout after intense cycling. Yesterday pain started at work while sitting at my desk and there was no stairs involved (other than a couple of stairs). I got up from my chair and sat on floor by squatting and then putting all weight on toes with heels off the floor. Then I hit the pain spot firmly (not punching but still firm hits) with my fist, not the knuckles but the side with folded fingers and bottom of palm, for 10-15 seconds. Miraculously it stopped the pain in it's track.

This morning I decided to roll my quads on hard foam roller at home before leaving for work to avoid another episode at work. This was a huge mistake and I immediately felt severe pain in quads, couldn't walk etc. While sitting on sofa I hit firmly all over my quad as all of it was hurting due to rolling on hard foam. Took a couple of minutes for the pain to subside but had immediate relief.

I am not sure about the science behind it but sharing the band aid pain relief solution hoping this would help someone else as well and avoid extended misery. I know when the first episode occurred I was in pain for hours with pain pulsating in and out.
 
Reactions: MDSanders
Dec 31, 2018
2
0
10
White male, 39 y/o. First post here in 4 years. I gave up cycling last year because my frequent travel schedule made it impossible to avoid episodes, which have increased in intensity and frequency with age. I switched to running. Training for a marathon at present (30 miles/ week) and experiencing the same thing. I mitigate it with copious amounts of Gatorade, especially on off days, and a high carb diet. I basically keep it under control and will go months without severe pain. That said, the pain from running has not yet been quite as bad as what I experienced cycling (7/10 vs 9/10). Based on comments here and some journal articles, I tried low carb last year with disastrous results and some of the worst pain I've experienced (lasting about 3 weeks).

I've had multiple MRIs, nerve conduction testing and genetic testing - all at HSS is NYC. I'll have a muscle biopsy next month but am not optimistic.

My symptoms (and likely yours if you're reading this) are more or less consistent with CPT II. My genetic test was negative, but my neurologist proposed that perhaps a diagnosis simply does not yet exist for what I have. MCT oil does not seem to be effective. Gatorade - that disgusting sugar syrup that comes in a short list of hideous flavors - works like magic. I buy it in bulk and mourn the forthcoming death of my young teeth.

As a side note, the first episode of Diagnosis on Netflix deals with CPT II and makes for some hard watching, despite the melodrama.

Thanks all.
Very interesting, pasaglia. If you are happy to share findings from your muscle biopsy, I'm sure many of us would be very interested indeed.
 
Jul 7, 2015
4
0
2,510
@pasaglia - just to be clear, you're not saying that you think it's CPT II, but rather that the symptoms are consistent with it?

In your original post (07th July 2015) you say "Sorry to say it is recurrent rhabdomyolysis. Could be dangerous if not properly managed - treatment being hydration". Do you no longer think it's rhabdomyolysis?

Sorry to hear you've been suffering with this too!
Hi budegan. Very sorry for the late reply. I haven't logged in in a while.

I think it is certainly rhabdo (the breakdown of skeletal muscle) as confirmed with a CK test too many times. I think that is the pain we are all suffering with. But the rhabdo is just a symptom of an underlying myopathy.

My CPT II genetic test was negative, so perhaps it is something like CPT II that has not yet ben identified. I also read on the Mayo clinic site that CPT II genetic tests can give false negatives. So perhaps it actually is CPT II? The biopsy will hopefully reveal something. Going the first week of October and will share the results as soon as I have them (presumably late October).

Laid out with the flu at the moment and cannot run. Chugging gatorade which seems to be pushing off the worst rhabdo. 23 hour flight to Vietnam tonight, and having Gatorade gives me a lot of confidence that I can do it.

Sorry again for the late reply.
 

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