Extreme quadriceps starting pain after 3-4 rest days

[NaturallyDriven]

Hi all... I'm 'enjoying' reading the continued experiences and details of the events leading up to the episode. I feel our shared experiences help narrow underlying causes / triggers, as 'officially medically undiagnosed' as we are. I've been back, training as hard as ever (up to 15 hours or so on trainer) and have had no issues. I haven't had a day off, and have no intentions to do so anytime soon. I had blood work done a few weeks ago for electrolytes and Acyl Carnitine.. electrolytes are fine and still waiting on the other results. My doctor also referred me to a geneticist for further testing, so we'll see if that bears any fruit.

No rest
Hydration
Reduced refined sugars
Stretching / rolling
Staying active on 'off days'

That seems to be the recipe.

 

[budegan]

I've not checked in on here for some time, but as I believe is the case for many other followers of this thread, it's the first place I come to as soon as the issue becomes relevant to me again.

It's interesting to see that there have been several new members to this horrible club since I was last here, and although I'm sorry to hear of anyone else suffering with this, it is somewhat reassuring knowing that I'm not alone!

Anyway just FYI - having avoided an episode for almost 2.5 years (by literally never missing a day - I know: insane), I had a close call with one a couple of nights ago. I hadn't been on the bike for almost 36 hours (which I consider to be very much pushing it), and the previous day had eaten A TONNE of sugar - a real horrible binge (sugar is my weakness, it was a day of low motivation, and I succumbed).

I think I must have caught it in time because it reared its head but never fully kicked in, and was completely absent from my training ride this morning (12 hours later).

Anyway I am posting this as I suspect that for me (I appreciate we could all experience this slightly differently, and have different triggers) the combination of "too much" rest and the OTT amount of sugar was to blame.

I am confident that I could have got away with a bit (but not loads) more time off the bike, but combined with the sugar it was bad news.

(BTW I'm virtually teetotal so alcohol definitely isn't a factor for me on this one).

So that's my latest in this sorry tale.

Keep well everyone, and stay riding (as in my experience it's the only way to keep this - literal - pain at bay!).

 

[crampingafterest]

Hi another newbie here who is relieved to have found this forum.
I'm in the middle of my first full attack, on day 5 and still got stabbing pain but am finding that if I stop walking when the seizing of the quads set in, it does seem to be releasing quicker.
I have suffered mild attacks for the past 3 months when I started training for ironman, same as most people in week 3 of block plan the attack happens, alway after a rest day but I think an Easter weekend of binging seems to have made this attack a full blown unable to walk more than 10mins and also walking down stairs triggers the muscles seizing.
Couple of things I was wondering if other people have experienced though?
I never get muscle seizing in my glutes and hammies?
For years now I have always been able to tense my calves to the point they want to cramp out but they won't fully cramp out? (I assumed it was low magnesium and potassium so take hydration tablets, but not so sure if that is the only reason for it now)
Thank you also for all the ideas floating around, I just want to get through this attack (fingers crossed not long now), get back to training and moving forward avoid another full blown attack.

 

[budegan]

Hi Cramping.

Welcome to this s***ty club!

A day off + a tonne of chocolate Easter eggs would certainly do it for me. It's SO ANNOYING!!!

Personally I have somewhat vaguely felt it in my glutes a couple of times, but nothing like the quads where it's consistently and intensely focused.

Hopefully you've only got a few more days and you'll be out of it, and you'll be smashing your way towards the Ironman again.

Best of luck. Of course if you happen upon a miracle treatment then post up!

 

[NaturallyDriven]

Hi another newbie here who is relieved to have found this forum.
I'm in the middle of my first full attack, on day 5 and still got stabbing pain but am finding that if I stop walking when the seizing of the quads set in, it does seem to be releasing quicker.
I have suffered mild attacks for the past 3 months when I started training for ironman, same as most people in week 3 of block plan the attack happens, alway after a rest day but I think an Easter weekend of binging seems to have made this attack a full blown unable to walk more than 10mins and also walking down stairs triggers the muscles seizing.
Couple of things I was wondering if other people have experienced though?
I never get muscle seizing in my glutes and hammies?
For years now I have always been able to tense my calves to the point they want to cramp out but they won't fully cramp out? (I assumed it was low magnesium and potassium so take hydration tablets, but not so sure if that is the only reason for it now)
Thank you also for all the ideas floating around, I just want to get through this attack (fingers crossed not long now), get back to training and moving forward avoid another full blown attack.

indeed. Welcome to our club. Your situation sounds identical to mine and most others here. After more than a decade of trying to self diagnose, the answer is still ‘take minimal rest’. Definitely sugar and alcohol on those rest days exacerbates things. I was in hospital in early Jan for a fluid IV as a result of an acute episode. You should know that the end result is Rhabdomyolysis. If you are concerned, or have really dark urine, definitely go get you CK levels tested immediately. I’ve never got it in glutes / hams, only quads.

since Jan I’ve had a lot of blood work done, through my family physician (who is also a sports medicine doctor) and a geneticist to whom he referred me. The only ‘somewhat’ abnormal numbers were in carnitine and oxalates. Both likely diet related, and neither tooooo far out of range to be a real concern.

I haven’t had a day off training since I got back into it and I’ve been 100% fine. Crazy that we can go as hard and long as we want, we just can’t rest.

 

[crampingafterest]

indeed. Welcome to our club. Your situation sounds identical to mine and most others here. After more than a decade of trying to self diagnose, the answer is still ‘take minimal rest’. Definitely sugar and alcohol on those rest days exacerbates things. I was in hospital in early Jan for a fluid IV as a result of an acute episode. You should know that the end result is Rhabdomyolysis. If you are concerned, or have really dark urine, definitely go get you CK levels tested immediately. I’ve never got it in glutes / hams, only quads.

since Jan I’ve had a lot of blood work done, through my family physician (who is also a sports medicine doctor) and a geneticist to whom he referred me. The only ‘somewhat’ abnormal numbers were in carnitine and oxalates. Both likely diet related, and neither tooooo far out of range to be a real concern.

I haven’t had a day off training since I got back into it and I’ve been 100% fine. Crazy that we can go as hard and long as we want, we just can’t rest.

 

[crampingafterest]

It is crazy that we can't rest, I've spoken to people in my Tri group and coach etc and everyone has just looked at me like I'm nuts.

I haven't been to the doctors as at present it seems to be improving, I swam today (open water 8 degrees lol) and had minimal seizing of the quads and calves which is a massive improvement from Wednesday, where I spent 20 mins having siezed legs.

I am monitoring my urine though, as

 

[combatman]

Hello everybody!
I have the exact same problem. After 3-4 rest days I will develop an extreme pain in the quads when trying to exercise. If I'm unlucky the symptoms worsens to the point I'm almost unable to walk. Just bending the legs are painful.

I believe it is a form of chronic exertional compartment syndrome. During normal conditions, when you train regularly, everything is fine. But when you're resting, glycogen builds up in the muscles, drawing in fluids and making the muscles swell a bit. Carb loading basically. Usually this is not a problem, but if your muscle fascia compartments restrict the swelling, pressure builds up instead. If the compartment pressure is higher than your diastolic blood pressure you will develop ischemia and severe pain. The ischemia may then lead to rhabdomyolysis and even more swelling.

My way to handle this is:

1. Training regularly
2. Stretching the quads after each workout (hopefully making the compartments adjust)
3. Being careful with carbs when I'm forced to rest

If this conservative treatment doesn't work there's always surgery. But I want to avoid that.

 

[SAL9000]

Hello, all!

I similarly registered just to post in this thread.

I'm also afflicted in my quads, with the two notable characteristics - the pain is not cramping, spasms or strain (it's just pain) and it's almost always triggered, when the TBD conditions were ripe, by walking downhill (like after a hike) or by riding on the flat after a big climb, always in the first 10-20 minutes of a ride.

I could write extensively on my experience, but in short, in the past I've been diagnosed with both compartment syndrome and rhabdo. The doctors said the later was essentially unheard of due to cycling but that's what they went with anyway. They recommended hydratation, supplements, and beinging mindful of recovery. I would still average 1-2 bouts a year however.

Welp, I'm here again after a bout, but the preceeding volumes of riding the last month have been ~25-50% my usual so extreme exercise (rhabdo) can't be it. I love my carbs, and spent the three days prior to this (easy) ride on the couch no doubt engorging my muscles with glycogen and fluid (dat WFH!).

I'm going to take the oft-mentioned advice ITT of taking it easy on carbs, under the general guise of a compartment syndrome problem. Not a doctor of course, but some of these responses (esp. by combatman just above) simply make more sense to me.

Would be fantastic to finally nail this . I often go on rides I have to drive hours to get to, and sometimes with a crew. Though this issue has never upset such a ride, it would be exceedingly unfortunate if it did.

 

[budegan]

Hey Sal. So are your bouts not triggered by time off the bike (as in 1+ rest days)?

 

[SAL9000]

Hey Sal. So are your bouts not triggered by time off the bike (as in 1+ rest days)?

AFAIK, that was not a common characteristic of previous bouts, but then again they weren't too memorable as they always happened in late August/early September, after 4-5 months of riding 8-10 hours/week, so I just went with the rhabdo diagnosis. This last bout happening in May is new and has me 99% convinced that it's not rhabdo as previous diagnosed.

I also ski, but do so only 1-2 days a week at most during the season - meaning, I'd easily have 5-6 days of virtually zero activity and then significant activity for a day (equivalent to a fairly strenuous ride) and never had a bout in all those years of skiing. It's only tied to consistent strenuous activity 4-6 days/week for quite a length of time (in my case, hiking many years ago, and riding in recent years).

Could be that previous bouts were indeed preceeded by a number of days of inactivity and I simply never connected the dots because of the rhabdo diagnosis. This time I am connecting such dots (compartment syndrome) and will go with the recommendation to lay off the carbs as I'm a bit desperate. Riding is a huge part of my life and getting taken out this early in the season is not good at all. I should say I'm a man in my late 40s, so age may have something to do with this new phenomenon of early onset (fascia not as "flexible" maybe?).

 

[steviep]

Sal hpw was your compartment syndrome diagnosed?From your history or by actual measurement of your compartment pressures?

The compartment sydrome diagnosis doesn't ring true for me... the thigh has 2 compartments, both of which are massive and can take a lot of extra swelling- unlike the lower leg, the commonest site of chronic compartment syndromes, which has 4 and so these are indvidually a lot smaller and can handle a lot less swelling. The lower leg version comes on quickly with exercise and so the phenomenon we are describing where it seems particularly related to several days of of not cycling, and also the 'second-wind' phenomenon, where if some people manage to cycle through it it goes away, doesn't match up. And why would walking downhill cause more swelling than walking uphill? We're missing an important piece of the puzzle! I def agree with you that I think glycogen is important somehow.

I've been doing lots of squats on non-cycling days and feel this has maybe put off my symptoms? But difficult to say how much of this has been psychological/down to other factors, when the longest has been 4 days. I'm doing ironman training so can't take any more time off cycling than that, but will test this all the way through after my race in October and report back.

 

[steviep]

https://www.england.nhs.uk/wp-content/uploads/2018/08/Rare-and-Inherited-Disease-Eligibility-Criteria-November-2020-21.pdf

I got re-enthused for sorting this out and found (for those of us in the UK, see link p212) the NHS eligibility criteria for testing for glycogen storage disorders. We fall under the heading of the second paragraph 1 (did they mean para 2?), "glycogen accumulation in the relevant tissue", section b. "Evidence of muscle involvement: myalgia OR rhabdomyolysis OR muscle weakness".
The test has to be requested by Cardiology/Clinical Genetics/Hepatology/Metabolic Medicine/Neurology; I don't know how enthused my GP would be to refer me to one of those specialties just for that, especially given the paragraph
"Referrals for testing will be triaged by the Genomic Laboratory; testing should be targeted at those where a genetic or genomic diagnosis will guide management for the proband or family"
... and I don't think a positive would alter management much!

To save myself the hassle I'll investigate a private test, as it's just a PCR panel I shouldn't think it would be too much

 

[SAL9000]

Compartment syndrome was diagnosed via blood tests and doctors' opinions. I'm not a pro athlete so they did not recommend the pressure test. It just seems a more likely cause than rhabdo in hindsight. The doctors have all said I probably have some sort of genetic predisposition for it all, and that there was no cure.

The effects of glycogen storage disease seem to be both chronic and severe - I've never had any of those issues - have always been healthy. Either way I'm gonna listen to the experience of soooo many ITT and see where low(er) carb takes me.

 

[SAL9000]

After the last episode (that precipitated my involvement ITT) I took ~9 days off and limited to significant extent carb intake, and today duplicated the same ride as last week that triggered "the burn." Sure enough, I triggered "the burn" after walking down hill ~50 feet after the first climb.

I took the advice to immediately get back on the bike and climb. I was expecting even more pain (so this was previously unimaginable) but amazingly, it was same and lo and behold after just about a minute of climbing the pain was ~50%. I finished the short climb, descended a bit, climbed a bit more, and repeated, and after ~15 minutes pain was 10-20%. The pain was so much better in fact I finished the ~2 hour ride (with ~2,000 feet of climbing, so not a easy ride, though I did go slow).

Over the course of the ride the pain slowly subsided to ~0%. A couple of interesting notes: When at the top of the pedal stroke (i.e.., knee bent) I would get ~50% pain but if I held it there for a few seconds it went away. After a few times of doing this that stopped as well. Also, when straightening the leg and flexing as hard as I could I'd get ~25% pain (but of course one does not ride a bike like this).

By the time I got home pain was gone and even the hard flex would only get me maybe 10%. After a few hours of just lounging around all returned to normal. The next day (yesterday) I repeated the ride at a moderate pace and could not trigger "the burn" despite trying multiple times (i.e., hopping off the bike multiple times to walk down an incline ~50 feet). Today I went on an ever harder ride (2 hours and even more climbing) and felt great.

Reading and thinking again, I have to think that I can't be causing significant, shall we say, "mechanical" problems/damage (compartment syndrome, rhabdo, as I had been diagnosed in the past) as I never ever get the pain during extreme exercise nor when at rest - it's the eccentric loading immediately following. Plus, the low volume of riding the last ~6 weeks simply can't point to such problems/damage. The how and why of exertion solving the problem is a complete unknown to me. I have to think any sort of glycogen processing problem would have been chronic, severe and full-body. Also, ALL previous bouts hit both quads simultaneously but this time it was the left leg the first ride and the right leg the second ride.

So, still mostly a mystery, but I'm at least one step closer knowing that immediate exertion (though a fair amount of it - it's not quick) fixes the issue.

 

[Golden.]

Did anyone ever have an episode despite riding every day? I was having mini episodes the last week which I could ride out but today I got hit very hard and had to stop riding after 1km. I've been riding every single day for at least one hour, but had the occasional recovery ride thrown in (around half of my 267FTP). I'm wondering if maybe those recovery rides are too easy and if I should up them to say 200watt. Recovery wouldn't be great, but everything is better than being off the bike for 7+ days.

 

[yolky]

I was reading a bit about polysaccharide storage myopathy in horses (PSSM), aka monday morning disease, which seems to be exactly the problem we're describing here, except in horses. From a cursory reading it seems that it may be related to a mutation in the GYS1 gene, which regulates the production of glycogen. It seems that mutation causes the gene to be overly effective, i.e. producing more glycogen than it should. Interestingly, another mutation of the GYS1 gene causes Glycogen storage disease type 0 (GSD0), which causes the inability to produce glycogen.

I wonder if someone did one of those DNA tests for glycogen storage disease, would it pick up the mutation in GYS1? Since many of those screening panels would already be testing GYS1 since it's related to GSD0, would they also detect the type of mutation which causes PSSM? If anyone is has access to one of these tests it might be interesting to see the result.

Disclaimer: I don't know much about biology so I may be talking out of my ass.

 

[Lcdcl]

Have the same issue and came across this.
I have the same MTHFR blood mutation- seems to be related to folic acid. I’ve tried altering my diet accordingly, though still have the same issue.
Wondering if the blood mutation is consistent with other with this issue

Katie Compton | Leg Pain | USA Cycling | USA Cycling

USA Cycling’s Katie Compton, 15 time-national cyclocross champion, copes with debilitating pain. Perseverance, mental toughness and self-advocacy have been central to her ongoing success.

usacycling.org

 

[budegan]

Have the same issue and came across this.
I have the same MTHFR blood mutation- seems to be related to folic acid. I’ve tried altering my diet accordingly, though still have the same issue.
Wondering if the blood mutation is consistent with other with this issue

Katie Compton | Leg Pain | USA Cycling | USA Cycling

USA Cycling’s Katie Compton, 15 time-national cyclocross champion, copes with debilitating pain. Perseverance, mental toughness and self-advocacy have been central to her ongoing success.

usacycling.org

That makes for uncanny reading. Wow.

I'm going to investigate this for sure - any advise on testing for the mutation would be massively appreciated.

 

[Golden.]

I agree, this checks out. I saw she got a facebook fan page. I'm not anymore on there. Maybe anyone on there could try to get in contact with her and ask her for more details regarding symptoms and management?

 

[TominWales]

So glad to have found this thread. I'm also suffering from this. I'm 51, fit - cycle around 200km per week (Zwift when it's raining and outside when it's not). Most of my kms are at endurance/tempo level, with more intense interval sessions on the trainer. Until recently I've not had any leg muscle issues at all, until last week that is. I'd had a fairly tough week on the bike the week before, folowed by an unprecedented 6 days without riding due to rain and work and family stuff. My diet was also probably worse than normal - a few too many beers watching football, and high sugar foods. I'm usually avoid processed foods, have limited easy carbs, and have lots of protein and fruit/veg.

I was walking down the stairs at work and I felt sharp pains in both my thighs, really sharp stabbing pains. I hobbled to the car and drove home, but my legs were sore for a few days afterwards. I've never experienced anything like it before. Not like cramp, not like DOMS and not like a tear/injury. They felt fine after a few days, so I went out for a ride, I didn't get more than 1km before the sudden onset of sharp stabbing pains in both thighs. I got off bike, streched and rubbed them - but the pain was so bad I couldn't even complete a pedal stroke without yelling out loud. I had to walk back home. I've tried to ride on the trainer a few times but I can't hold 100W for even a few minutes before the pain kicks in and is unberable. The pain is sometimes both legs, sometimes just one, the pain also isn't in the same place - it moves around, but always in the thighs. Then over the following few hours the pains lessen and it becomes a little bit more like DOMS.

I initially thought it might be related to the AZ Covid vaccination (had my 2nd jab a few weeks ago) - and tried Googling for other examples - but there's nothing. Everything people are describing here though fits with my problem.

My conclusions from reading this are:

• we're all fit and these episodes have come after an atypically long rest period.
• it seems likely the pain is caused by a build up of glycogen in the muscles.
• visits to a doctor / physio are unlikely to help - as this seems an unsual condition and you're most likely to be told to rest, take it easier on the bike, stretch more, use the foam roller - none of which are likely to do any good.
• the underlying cause is uncertain, but most likely related to some form of metabolic myopathy and if pushed too far can result in rhabdomyolysis.

Reading this forum has been really helpful in deciding how to try and proceed:

• I'm going to keep getting on the trainer every day - really low intensity and as soon as the pain kicks in, stop - the hope being that i'll be able to gradually increase the duration/intensity over time.
• reduce carbs, avoid alcohol to allow glycogen to dissipate from muscles.
• stretch before and after these mini-sessions
• keep hydrated and take NSAIDS before the session.

What I don't understand is:

Why is this only affecting the thighs? We're using other muscles on our bikes.
Why is walking downhill or down stairs a trigger?
Why does the pain move around?
Why does the pain come on so suddenly and violently?
Why has this started now (after a life time of exercise)?

Anyway, despite the remaining unaswered questions, I'm grateful for the detailed and intelligent comments from everyone on this forum. It's somehow reassuring, if still very frustrating.

cheers,
T

 

[Golden.]

Please don't take NSAIDs before every session. They do more harm than good, and are in my experience completely useless regarding our condition. The only use they may have is to mask some of the pain when in the middle of a episode and you are trying to ride it out, which is possible, but not always and even drugged up it's extremely painful.

 

[TominWales]

OK, I think you're right Golden - thanks for the advice. I don't naturally like taking any pills.

As an update - i've just ridden for 45 mins on Zwift at an average power of 130W. So, super low intensity, but it feels like huge progress. Yesterday I could only manage 15 minutes, the day before that was 10 minutes and before that 5 minutes.

The things I did differently today were stretching beforehand, then pausing the ride after 30 minutes and stretching again, then again afterwards. I also drunk a lot - 2 bottles of water - one with an isotonic tablet in. As soon as I felt the pain coming on I stopped. I've also cut back on the carbs since reading this thread yesterday. I haven't taken any NSAIDs.

Longer term I'm going to try and avoid prolonged breaks, especially after a heavy week.

 

[NotFittingPatterns]

Has anyone found an answer on here why this is happening?

This next one is a long shot...

Has your body ever been introduced with large amounts of propylene glycol. I am not sure where is this used elsewhere but often in Anaesthetic products.

I had a knee surgery go, oh so very poorly, almost 8 years ago. Not only do I have permanent damage to my knee, leg and good, joint and vascular, but it effected me systemically. I am amazed what can happen if someone is sensitive to Propylene glycol and how little the medical community know about it or even recognizes it.

---
After administration, it is metabolised to lactic and pyruvic acids, and although uncommon, acidosis and serum hyperosmolality have occasionally been reported after high doses [5, 6]. Rapid intravenous administration of products containing propylene glycol has been associated with the development of hypotension and arrhythmias ± a further reason why intravenous preparations of propylene glycol-containing agents, especially phenytoin and digoxin, should be administered slowly. Products using propylene glycol as a vehicle are also liable to cause significant thrombophlebitis, which in some studies has had an incidence as high as 60% [7], often with serious consequences [8]. Such findings have led manufacturers to reformulate propylene glycol-containing products such as diazepam into injections containing less irritant additives. Preparations of the intravenous induction agent etomidate can contain up to 35% propylene glycol, and it has been suggested that the solvent in some formulations may be responsible for pain on injection. Although the mechanism is unclear, it has been suggested that propylene glycol has a direct effect on the vasculature, resulting in local tissue and endothelial cell damage [9, 10], an effect that has been noted previously with other drugs [11].

 

[budegan]

Re Katie Compton. I was able to get in touch with her so sent her a message explaining that this thread existed and asking if she'd be kind enough to share further info for us. Fortunately she was generous enough with her time to send the following response:


Hi,

No worries, happy to help if I can. I didn’t know this was a string on CN and that so many more people are affected with something similar to what I feel. So sorry to learn you have been suffering from legs pains too, they are the worst and really affect your day to day life and movement, let alone exercise ability.

The test that I had done to see if it was a possible cause was a test for an MTHFR gene mutation. It’s an enzyme in the body’s methylation process at the cellular level that affects ones energy and metabolism among many other things. Both my genes are affected (A1298C) so that is one reason why I have such extreme pains for so long (there could be others but I haven’t done anymore gene testing). If only one gene is affected, the good gene tends to dominate and manage the methylation process ok, even though the process is still compromised. I manage my issues well, but I still have occasional pains (mainly when running downhill) and need to be careful with what I eat, managing stress, and not doing too much intensity. This isn’t a problem you can ever fix. You just need to learn how to manage the symptoms to live without pain.

You can search for info on MTHFR gene mutations and a lot of the info will tell you it’s not a big deal, but the majority of the research is on the MTHFR gene C677T which affects one’s metabolism a bit differently than the mutation I have which is A1298C. This gene mutation also affects homocysteine levels which is your body’s ability to metabolize and clear histamine. If you also have bad allergies, having this mutation could be the issue.

There still isn’t enough research on athletes and exercise with this mutation and it’s hard to diagnose what exactly is causing the pain since it’s on the cellular level.

What has helped me the most is cutting out all folic acid (it’s in everything processed as all wheat products/flours/rices nowadays) and making sure I only eat folate from real food and take a folate supplement with high doses of the usable form (6S)-5-methyltetrahydrofolate my body can actually utilize. If you have this mutation, your body lacks the enzyme to process folic acid so you can suffer from folate deficiency and folic acid toxicity.

If your body has a compromised methylation process then it may take a week or two for your body to clear toxins, and this is made worse with folic acid in your system. The more you exercise the more your body uses folate for metabolic processes and the worse your pain will be if you are low.

That’s about it in a nut-shell. Changing my diet has helped me the most with all of this and a doctor would never think about that part.

Katie