Extreme quadriceps starting pain after 3-4 rest days

[ScottyC1969]

Here’s an excerpt from a Katie Compton article that may help add a little.


Since I wasn’t riding, I had lots of extra time,” Compton said. “I was sad and depressed. I was reading a lot, and listening to podcasts, especially those focusing on diet, nutrition, and health, trying to figure out why I felt so awful. Even walking up the stairs, I would stop for recovery at the top, and this was when I was not even training. I would get tired even just out walking the dog.”
Compton came across a podcast focusing on thyroid issues that touched on all of her symptoms. Through this, she ultimately discovered that she has a genetic defect — her body lacks the methylenetetrahydrofolate reductase enzyme (MTHFR) needed to convert folic acid into the usable form of methyl folate. Without this enzyme, folic acid builds up in the blood stream to toxic levels.
“Blood tests confirmed that I have that gene defect. It’s the root of all of my issues,” Compton said. “I asked my endocrinologist to check for it, and I was positive for both defects on both genes, one from mom, one from my dad. All the symptoms — leg cramps, asthma, reduced ability to recover, antibiotics make it worse — are all from this defect.”
(Noteworthy: In January 1998, the U.S. Food and Drug Administration (FDA) began requiring manufacturers to add folic acid to enriched breads, cereals, flours, cornmeals, pastas, rice, and other grain products, primarily because pregnant women with insufficient folate intakes are at increased risk of giving birth to infants with neural tube defects. Compton’s leg cramp issues began in 1998.)
After almost 20 years of complicated health issues, the solution to Compton’s problems is simple — taking methyl folate supplements, and avoiding foods enriched with folic acid.
“The entire time I’ve been racing, I’ve been dealing with this,” Compton said. “This is the first time I’ve ever been able to train without leg cramps. So there is a huge positive of not riding this summer. If I hadn’t had so much time on my hands, I wouldn’t have gone to the trouble to research this, and I happened to stumbled upon the right podcast. It’s changed my life.”

 

[ScottyC1969]

Q&A with Katie Compton: ‘I cannot bend my legs’

Her old enemy, searing leg pain, forces Katie Compton to abandon in lap 2 of the world cyclocross championships.

www.velonews.com

 

[NotFittingPatterns]

Thank you for posting this. I have not yet looked into it with my Dr. What I need to do is find a new doctor first probably since my Drs response was I get muscle cramps too. WTF.

 

[ScottyC1969]

So following on from the above and the MTHFR gene mutation I have had the testing done and I do have the following
C677T Mutation 1 heterozygous
A1298C Mutation 0 not detected

So what this is all means will require more research but I’m hoping we may be onto something as per Katie Compton. If anyone else gets tested please feel free to share the results.

 

[Armchaircyclist]

I've had some similar experiences to those described in this thread, however I'm lucky enough to say that they went away, and are years behind me. That is the pain in the quadriceps after a few rest days ! Probably my pain came from increasing training volume very sharply, at least that is how I diagnosed myself. Still strange though that it is the rest days that cause trouble.

However I have developed another problem. Cycling has become my main form of training, while 5-6 years back I switched from running to cycling. For years it was ok to do the occasional run, but not anymore. If I do a run even a moderate one that does not even at all feel painful, my quads will be destroyed the next day, to the point of having sharp pain while walking. Pain will slowly subside, but the legs will not feel good before around 5 days of recovery/light training.

I'm wondering if this is caused by some inflammation in the muscles, or what, it seems that the hard hits from running causes massive trouble, which it never did before. By the way I eat carbs without any worry, munching them down, may also be a problem hehe. Or maybe I'm just getting old, at 52 I guess I cant expect too much, being relatively good at cycling is not too bad

One issue that I have wondered about - as a taxi driver I sit a lot, and blood circulation in your quads is quite limited when sitting too much. Maybe some of these "rest day" problems are mostly connected to not getting enough blood through the big muscles that need to transport away some waste material from previous efforts ? Just a thought

 

[RhabdomyolysisMaster]

Hello,
a male from Germany (So sorry for mistakes. My English is not the yellow from the egg) here. I have had the same symptoms described here.

My symptoms started this July, when i got a new bike and started cycling regularly. The first time i got this, my thighs started hurting so bad, that i could only walk for a few minutes. So, when I got my new bike I cycled everyday for 5 days. I cycled in the morning 25km to school and 8h later, 25km back home. But I did not use all my power because the bike is an e-bike(vanmoof).So I cycled the way to school without help and the way back with maximum help. As I said, I did this for 5 days and rested the weekend. The pain started slowly on Monday and got worse. On Monday morning I was able to walk to the train station (1.5km), but when i left the train and walked to school the pain got so bad, that i had to sit down after 300m. It took me twice or triple the time to walk the way to school. My legs stiffened and I was not able to bend my legs. My pain is similar to a lot of the comments, but i cannot describe it further because i do not have the vocabulary (I can barely describe the pain in german too). When i finally arrived and sit down my legs still have hurt extremely for 20-30 minutes. Then the pain got less, when I sat down, but i still was not able to bend them. But as soon as i started to walk for more than 30-50m they began to hurt very bad again. It got so worse, that I had to take a 5-10m break on the toilet, every-time I got there. Thus, it was stress induced. The pain lasted for 5-7 days and the next Monday I could walk completely normally. I did not visit the doctor the first time.

My second time when I got this symptoms was 2-3 weeks after this. But this time I could cycle for 2 weeks, but I did not take a rest day on weekend between the two weeks. So, when i finally took two rest days, again the weekend, the same symptoms appeared. I did not notice them and already got on the bike. They appeared after 10 minutes, but I did not want to go back. And oh boy, this was the most painful trip of my life. It took 2hrs and there were parts were I had to walk. This was the day, when i finally attended the doctor. I did a blood test on Friday and had a CK of 16.000, high GOT(ASAT), high GPT(ALAT) and high LDH. I stayed at the hospital for one week and got an infusion of 200ml/h water. I did some tests: They checked my heart with ECG(multiple times) and x-ray(thorax) -> Result nothing, and They did a MRI of my thighs. They saw that the Muscles have broken down(I think that they saw this, I do not know exactly, but they told me there was something bad), but they already have thought of this. They thought i have Morbus McArdle, but they quickly discared this thought because i did not have something like a second-wind-phenomena. After 6 days my Blood values got acceptable and they send me to another hospital, which is specialized for metabolic disorders. They thought I have CPT-II and they checked my genes. They released me because my blood-values stabilized (still not normal, but not threatening). After one month I got the result of the test and it turned out negative.

The third time i got this was two week ago. I started to cycle to school again and did it this time for only 4 days(Tuesday-Friday). I rested the weekend and went to the doctor and made a blood test. The CK was 3000 and a day after the test I went to the hospital and my CK was 13.000 (GOT(500), GPT(120), LDH (700) was also high). I went home under the condition, that i do not exercise and drink a lot. They now check all my muscle genes, if there is something wrong.

Just wanted to share my story because when i could not find something for my symptoms It was really strange. And maybe this helps. I will update when there is a result for my gene-test.

Edit: One thing that came to my mind right now are pain-reliever how was your experience, when you had this episodes. I got Ibuprofen and it did not help and Metamizol(Novalgin). Bot did not help no matter which dose.

Edit 2: My urine also did not turn brown it was clear

 

[Golden.]

I'm now struggling with this for over a year and can only hold it of by cycling at least every other day (doing ~500km each week in the summer, ~300km in the winter) and being very disciplined with my diet. My usually episode are pretty rough, but either I can get them to not come on fully by catching them early and cycling through the pain or they disappear after 7-8 days.

I recently got my most extreme episode after receiving my second vaccine shot. To cut a long story short: when the pain didn't subside after a week and my urine started to literally look like blood I called an ambulance. They had to carry me down from the 4th floor because there was no way I could have managed the stairs. At the hospital they checked my CK and I was above 80.000 - that's just the highest value their equipment allowed them to measure, the real value probably was double of that. Liver values were also so high they fist tought I was an alcoholic (I don't drink any alcohol) or had Hepatitis. I had to stay there for a week, no tests were done as I already had pretty much every test done on me on previous visits and two visits to a clinic specializing in muscle diseases. Just got massive amount of IV fluids and was discharged with a CK of 15.000.

So yeah, just wanted to share this to let you know that vaccines might be a potential trigger (also found two case studys of vaccine induced rhabdomyolysis on the net) and it definitely can get so bad that your urine changes color as is reported often with severe cases of rhabdomyolisis.

All in all I was off the bike for 4 weeks. 2 of these I was pretty much confined to my or the hospitals bed. I'm now in my 4th week after starting training again and am back to my old level of 5w/kg. No issues since my last episode, but I definitely won't get a booster shot when my time comes (my doc is also against it).

 

[greylock]

Hello,
New to the forum but have been following this thread for about 4 yrs. since my first episode at age 37. I've been experiencing about 2 per year but they seem to be increasing in frequency. My onset is similar to others however my symptoms can trigger with only 1 day off the bike, particularly if I do a high volume week and then sit on a plane for 6hrs.

I have gone through a similar process that many have described on this thread...went to the ER the first time with CK levels off the charts. After that I have just treated at home trying to keep hydrated. Never experienced any dark colored urine. Have been seeing a neurology team in Boston for about a year and a half now and they have yet to find anything wrong.

All tests and bloodwork have come back negative for muscle disease. EMG was normal. Recently had a genetic test done and I believe they focused on genes related to fatty acid oxidation. They are now resubmitting the sample for glycogen storage abnormalities but they are not confident they will find anything given I've done plenty of intensity/intervals with no issues. I also submitted a 23&me sample following the Katie Compton lead but no obvious MTHFR mutations to speak of.

I have been trying to wrap my head around the sensation of how these episodes start and how the pain initiates and develops. To me, it sometimes feels like a mild electrical storm at first: very mild brief myalgia that seems to "float" around the various quad muscles and slowly settle on one. Then later in the day or next day targets another muscle or another leg. This has led me to try to learn more about channelopathies or errors within the electrolyte process of the muscle. I am not trained in medicine and just doing my best to understand journal articles such as this:

Sodium channelopathies of skeletal muscle result from gain or loss of function - PMC

Five hereditary sodium channelopathies of skeletal muscle have been identified. Prominent symptoms are either myotonia or weakness caused by an increase or decrease of muscle fiber excitability. The voltage-gated sodium channel NaV1.4, initiator of ...

www.ncbi.nlm.nih.gov

Along those lines I have also been reading about the role of histamines that are released by the muscle in order to repair itself after exercise. My current best guess or hypothesis is that we are hypersensitive to some kind of metabolic blockage/buildup in the muscle when we train regularly, sweat, rehydrate and then abruptly stop that cycle. Those of you who have tested negative for CPT2 indicate it's not necessarily glycogen at issue. Here is a related video I found interesting:

View: https://www.youtube.com/watch?v=6QjOxsOZpG4


Hopefully this will resonate with some of you. I know some of these have come up previously in the thread but wondering if anyone is confident about triggers related to the following:
-caffeine
-alcohol
-carbs
-salt intake

Cheers to all of you!

Edit: I was able to stop the most recent episode after only 6 days (as opposed to 2 wks +). I got on the indoor trainer and without any warmup pedaled at tempo wattage keeping constant tension on the muscles. Cramps seemed to start to come on but not to the point of seizing the legs. After 1hr of mostly tempo effort I felt much better, episode gone by the next day.

 

[greylock]

Hello,
a male from Germany (So sorry for mistakes. My English is not the yellow from the egg) here. I have had the same symptoms described here.

My symptoms started this July, when i got a new bike and started cycling regularly. The first time i got this, my thighs started hurting so bad, that i could only walk for a few minutes. So, when I got my new bike I cycled everyday for 5 days. I cycled in the morning 25km to school and 8h later, 25km back home. But I did not use all my power because the bike is an e-bike(vanmoof).So I cycled the way to school without help and the way back with maximum help. As I said, I did this for 5 days and rested the weekend. The pain started slowly on Monday and got worse. On Monday morning I was able to walk to the train station (1.5km), but when i left the train and walked to school the pain got so bad, that i had to sit down after 300m. It took me twice or triple the time to walk the way to school. My legs stiffened and I was not able to bend my legs. My pain is similar to a lot of the comments, but i cannot describe it further because i do not have the vocabulary (I can barely describe the pain in german too). When i finally arrived and sit down my legs still have hurt extremely for 20-30 minutes. Then the pain got less, when I sat down, but i still was not able to bend them. But as soon as i started to walk for more than 30-50m they began to hurt very bad again. It got so worse, that I had to take a 5-10m break on the toilet, every-time I got there. Thus, it was stress induced. The pain lasted for 5-7 days and the next Monday I could walk completely normally. I did not visit the doctor the first time.

My second time when I got this symptoms was 2-3 weeks after this. But this time I could cycle for 2 weeks, but I did not take a rest day on weekend between the two weeks. So, when i finally took two rest days, again the weekend, the same symptoms appeared. I did not notice them and already got on the bike. They appeared after 10 minutes, but I did not want to go back. And oh boy, this was the most painful trip of my life. It took 2hrs and there were parts were I had to walk. This was the day, when i finally attended the doctor. I did a blood test on Friday and had a CK of 16.000, high GOT(ASAT), high GPT(ALAT) and high LDH. I stayed at the hospital for one week and got an infusion of 200ml/h water. I did some tests: They checked my heart with ECG(multiple times) and x-ray(thorax) -> Result nothing, and They did a MRI of my thighs. They saw that the Muscles have broken down(I think that they saw this, I do not know exactly, but they told me there was something bad), but they already have thought of this. They thought i have Morbus McArdle, but they quickly discared this thought because i did not have something like a second-wind-phenomena. After 6 days my Blood values got acceptable and they send me to another hospital, which is specialized for metabolic disorders. They thought I have CPT-II and they checked my genes. They released me because my blood-values stabilized (still not normal, but not threatening). After one month I got the result of the test and it turned out negative.

The third time i got this was two week ago. I started to cycle to school again and did it this time for only 4 days(Tuesday-Friday). I rested the weekend and went to the doctor and made a blood test. The CK was 3000 and a day after the test I went to the hospital and my CK was 13.000 (GOT(500), GPT(120), LDH (700) was also high). I went home under the condition, that i do not exercise and drink a lot. They now check all my muscle genes, if there is something wrong.

Just wanted to share my story because when i could not find something for my symptoms It was really strange. And maybe this helps. I will update when there is a result for my gene-test.

Edit: One thing that came to my mind right now are pain-reliever how was your experience, when you had this episodes. I got Ibuprofen and it did not help and Metamizol(Novalgin). Bot did not help no matter which dose.

Edit 2: My urine also did not turn brown it was clear

My doctor first tried gabapentin which is an anti-seizure medicine. The hope was that this would stop new pains from coming on but it did not seem to have any effect. More recently I was prescribed Valium which is a muscle relaxant. Did not seem to have a huge effect- MAYBE helped the stiffness resolve a bit quicker after the pain subsided. I only took 5mg though so possible a larger dose would have a greater effect.

 

[globecanvas]

Hi all,

I was active in this thread back in 2016 when I first experienced this syndrome. At the time I was racing bikes every week. The initial trigger in 2016 was a week off the bike (plane travel, vacation, unhealthy food) after training almost every day for years. I suffered episodes for about a month but eventually they faded away and I continued racing for another few years.

In 2019 due to family circumstances I stopped racing and riding regularly. Last spring I resumed riding and slowly got back into shape, riding every day or so.

My last ride was a week ago, I've eaten tons of unhealthy food over xmas, and yesterday walked down a steep hill and got the full stabby leg attack. I had forgotten how excruciatingly painful it is. NSAIDs helped after an hour or so. Today I tried an easy ride and had another attack.

So I came back to this thread and found another hundred posts since I last participated.

Summing up my experience:

• Fit athlete
• Attacks triggered with a long period of daily training followed by multiple days off + low activity + high carb/bad diet
• Attacks went away for years and then came back when trigger circumstances recurred

Summing up my opinions:

• I'm confident this is the human equivalent of Monday Morning Syndrome aka "tying up" in horses
• A significant number of sufferers have reported positive benefits from low carb or low folate diet

One thing that's clear reading back through the thread is that advice from anyone who hasn't experienced it is useless. This is a unique and specific syndrome that has nothing to do with DOMS, stretching, etc.

I really appreciated hearing Katie Compton's experience. I'll be turning off my xmas-mode poor diet immediately and will do my best to avoid the triggering scenarios.

Good luck everyone!

 

[Deep0527]

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[Golden.]

Hello,

For about a year now I have been monitoring this thread in the hopes a solution would be found. About 3 months ago I decided to take matters into my own hands after two bad episodes, the second of which landed me in the ER. I believe I stumbled into some information that has yet to be discussed here and would like to share my experience up to this point in the hopes of finding preventative measures in the future.

I started cycling more seriously in 2019 and average about 6,000-8,000 miles a year riding ~5-6 days a week. Like many of you, my episodes almost always occur after a rest period, although in my experience it has only taken about 36-48hrs off for my next ride to potentially trigger the intense muscle pain and rigidity. For me, an episode starts happens within the first hour of a ride, usually early on during warming up, getting out of town away from traffic during the stop and go at traffic lights or immediately after the first working interval at or above FTP. It seems that throughout the season, most of my episodes happen once training volume has already been ramped up (between the months of May-September in New England) and I am doing 2 high intensity sessions a week with the remainder of rides in Z1 of the 3 zone training model.

Although my episodes have varied in intensity, the symptoms has been very consistent. It starts with a dull pain, usually in the quads or glutes and some slight tightness. Within minutes this normally evolves to complete muscle rigidity, lots of pain and the loss of the ability to bend my legs without serious resistance and more searing pain. Often this is accompanied with increased thirst and heavy sweating while laying in agony on the side of a road. Affected muscles also tend to look more full and are more hard to the touch as if they are flexed at all times. I used to try and stretch out, take in at least a full bottle and a gel or some food, get back on the bike and attempt to get back home. This sequence of pain and slight relief was always repeated a few times, stopping at every roadside grassy patch available to try and stretch and drink more water. Once home, I found that icing my legs helps along with whatever stretching could be done with my impaired range of motion. I learned the hard way not to foam roll out because it only makes matters worse as was mentioned before here. As pain and rigidity reduce over time, this is replaced by incredible soreness that last days, sometimes even a full week.

I have also had slight twinges that were excited by eccentric loading of the quads or glutes from activity such as walking down stairs or a slope. Again this only occurs when training volume/load is high through the warm months.

Now on to my recent experience after a particularly bad episode in early September 2021. After the episode, I was able to make an appointment to have some blood tests done. Due to this thread I knew to ask for CK levels to be checked as well as some inflammation markers such as Sedimentation rate, C-reactive protein, etc. Bloods were taken 4 days after the episode and found CK levels around 7,000 which caused the doctor to send me to an ER as they believed I was recovering (not well) from rhabdomyolysis. IV fluids for a day then discharged and conveniently wiping out my whole deductable so I decided to really chase this. After meeting several times with my PCP, a neurologist, a geneticist, and doing some research into family history we believe that a rare disorder called Malignant Hyperthermia is causing these episodes.

Malignant Hyperthermia (MH) is when your body overheats uncontrollably causing all sorts of problems such as increased heart rate, greatly increased body metabolism, muscle rigidity and/or fever that may exceed 110 degrees F along with muscle breakdown, derangements of body chemicals and increased acid content in the blood. Severe complications include: cardiac arrest, brain damage, internal bleeding or failure of other body systems. Thus, death, primarily due to a secondary cardiovascular collapse, can result. (from MHAUS website). Now an MH episode is usually triggered in the presence of certain anesthetics however there are becoming increasingly more cases being documented of exercise induced malignant hyperthermia cases. To understand why this is happening and how I could possibly be triggering MH episodes on the bike, we need to look at what causes all these bad things to happen. MH is triggered when ATP is unable to reuptake the calcium that was sent to your muscle to cause contraction and the receptors that regulate the calcium allow more calcium to freely flow to reticulum disallowing muscle relaxation. So in layman's terms, my muscles were contraction and unable to relax themselves during this episode causing the muscle rigidity and pain. My description isn't perfect but it will get us where we need. So how did we find this?

First family medical history proved to be key as i have relatives who have tested positive for MH through a muscle biopsy and the contracture test. With this knowledge, the geneticist was able to run a swab for a mutation of the RYR1 gene; the ryanodine receptor controls the release of calcium to contract your muscles. With a positive result on this test and the known family history the doctors concluded that it is highly probably I have MH even without the muscle biopsy testing (planning on doing that in the future) and that the episodes i have been experiencing are exercise-induced MH. You can also have a mutation in the RYR1 gene and not have MH but I do not have much information on what that scenario would mean in regards to our problem.

Finally we come to what are some potential solutions. Now this is still a work in progress as I stated above but there are at least some actionable measures that can and should be taken if anyone else finds themselves following a similar path to mine. First off is for us cyclists that often travel far from home alone and that is to carry dantrolene. That is the drug every hospital is required to have by law in order to combat anesthesia-induced MH upon a reaction. An oral version is available and can be prescribed for someone with MH and i now carry with my on every ride to use in case of an episode as a reactive measure against MH.

The goal is one day to have a preventative measure although at this time I am unaware of one due to extremely limited research. Someone with MH lives with the condition everyday but it only triggers on select occasions. This means there is a factor that causes these episodes and hopefully we can find out what is it. I am starting from a food/nutrition standpoint like many in this thread have mentioned and will update if i find anything useful.

Hope i am able to help atleast one person with this information as i know my journey through this has been hell. Feel free to message me personally if you have any ideas or would like to help me test out some of my theories.

All the best,

Craig

Hi Craig,

II thought about MH too, but it just doesn't seem plausible to me. If these episodes are due to MH, there should be more symptoms associated with MH present, like increased heart rate, fast breathing, stiff jaw and extremely increased body temperature. I have nothing of these and I had episodes with an CK of over 80.000 and urine looking like blood.
My episodes are also certainly linked to carb intake. In 90% of cases I can say that I had unusual amounts of carbs before an episode happens. Would be interesting to know if anyone here with these symptoms ever had a anesthetic that would trigger an MH crisis or is confirmed to have MH.

 

[Golden.]

Golden,

In my experience, I have not had increased heart rate, fast breathing or stiff jaw either, although I assume my body temperature does rise with some episodes ergo elevated sweat rates and I certainly have malignant hyperthermia. From my research, exercise-induced MH seems to be more mild and missing some symptoms in some cases that are characteristic of an anesthetically driven episode. Its worth noting that I had brownish urine with my episode in September too, which is why I decided to get bloods checked and ended up in the hospital myself. Also my AST/ALT liver enzymes and calcium and albumin serums (ionized calcium had already normalized) were still elevated which would be evidence that at some point an MH event had occured. Might be worth checking your bloods again to compare if they ran a metabolic panel.

Here is a good place to start learning about MH if you or anyone is interested: https://www.uptodate.com/contents/malignant-hyperthermia-diagnosis-and-management-of-acute-crisis?search=Malignant hyperthermia: Diagnosis and management of acute crisis&source=search_result&selectedTitle=1~90&usage_type=default&display_rank=1

A small section further down the study says the following: There is a rare subset of MH susceptible (MHS) children and adults who have developed what some authors call "non-anesthetic," or "awake," MH. Patients who have developed this syndrome were usually, but not always, exposed to heat stress, including febrile illness, or exercise in the absence of triggering anesthetic agents. In most cases, symptoms have abated either spontaneously or with self-administration of oral dantrolene, but several cases have rapidly proceeded to accelerated hyperthermia, hyperkalemia, and death [41,42,85].

If you look into the sources for that passage it gives 3 of the only studies available on non-anesthetic induced MH events.

Exercise-induced MH has very little published research currently so it is hard to say concretely what symptoms should and shouldn't be present. I would not dismiss significantly increased carbohydrate intake as a possible trigger event either. Like I said above, if it is MH, its a genetic mutation that you live with everyday so there must be some variable (change in carb intake or otherwise) that provokes an episode to occur.

I am not a doctor, I'm an engineer, so take everything I say as you will

Again, I hope atleast one person can take away some new information here.

Craig

Yes, AST/ALT were significant elevated too, but this is common in rhabdomyolysis. Calcium was normal.
Going over my values again, what I find very strange is that I had Glucose level of 105 when I presented at the hospital - I hadn't eaten for at least 3 hours, probably much more, at that time. Dunno what to make of it.

The human equivalent of monday morning disease in horses still seems the most plausible to me, but I'm all for discussing alternates!

If I remember correctly, on a german forum discussing this strange disease someone also mentioned that he has MH. Have to check for it again later, but you might be onto something.

 

[RhabdomyolysisMaster]

Golden,

In my experience, I have not had increased heart rate, fast breathing or stiff jaw either, although I assume my body temperature does rise with some episodes ergo elevated sweat rates and I certainly have malignant hyperthermia. From my research, exercise-induced MH seems to be more mild and missing some symptoms in some cases that are characteristic of an anesthetically driven episode. Its worth noting that I had brownish urine with my episode in September too, which is why I decided to get bloods checked and ended up in the hospital myself. Also my AST/ALT liver enzymes and calcium and albumin serums (ionized calcium had already normalized) were still elevated which would be evidence that at some point an MH event had occured. Might be worth checking your bloods again to compare if they ran a metabolic panel.

Here is a good place to start learning about MH if you or anyone is interested: https://www.uptodate.com/contents/malignant-hyperthermia-diagnosis-and-management-of-acute-crisis?search=Malignant hyperthermia: Diagnosis and management of acute crisis&source=search_result&selectedTitle=1~90&usage_type=default&display_rank=1

A small section further down the study says the following: There is a rare subset of MH susceptible (MHS) children and adults who have developed what some authors call "non-anesthetic," or "awake," MH. Patients who have developed this syndrome were usually, but not always, exposed to heat stress, including febrile illness, or exercise in the absence of triggering anesthetic agents. In most cases, symptoms have abated either spontaneously or with self-administration of oral dantrolene, but several cases have rapidly proceeded to accelerated hyperthermia, hyperkalemia, and death [41,42,85].

If you look into the sources for that passage it gives 3 of the only studies available on non-anesthetic induced MH events.

Exercise-induced MH has very little published research currently so it is hard to say concretely what symptoms should and shouldn't be present. I would not dismiss significantly increased carbohydrate intake as a possible trigger event either. Like I said above, if it is MH, its a genetic mutation that you live with everyday so there must be some variable (change in carb intake or otherwise) that provokes an episode to occur.

I am not a doctor, I'm an engineer, so take everything I say as you will

Again, I hope atleast one person can take away some new information here.

Craig

Hey,
nothing special but maybe interesting for your MH hypothesis, because i have not seen somebody mentioning MH before. When i got to the hospital for the first time(stayed for a week), the doctors came to me after 1-2 days and also told me, that they think i may have MH. But they then dropped the case the next day. When i got to hospital again, this time a specialized hospital for neuropediatrics, i asked them what happened to my MH „diagnosis“ and they said i dont have to worry about it, because it would only matter, if i would get anasthetics. But they did not told me in the exact reason why they think it is not MH. Maybe that helped a bit.

Btw i still got no diagnosis, but i get results for my second DNS-Test in 1-2 weeks.

Bent

 

[Golden.]

Check this link: https://rarediseases.org/rare-diseases/ryr-1-related-diseases/ and especially this paragraph:

Exertional rhabdomyolysis: Certain RYR1 variants may also lower the threshold for onset of muscle fiber breakdown upon physical exertion (exertional rhabdomyolysis), accounting for up to 30% of reported cases [8]. Symptoms include muscle pain, exercise intolerance, and cold-induced muscle stiffness. Affected individuals are often asymptomatic prior to being exposed to one or more triggers which include exercise in the heat, viral illness and use of statin medications. A subset of individuals with RYR1-related exertional rhabdomyolysis also test positive for malignant hyperthermia susceptibility. Preventative measures for exertional rhabdomyolysis include limiting exercise in hot and humid environments and consulting a sports medicine specialist or physical therapist to help develop a structured incremental exercise program at lower intensities. For more information on exertional rhabdomyolysis, refer to the RYR-1 Clinical Care Guidelines (Chapter 4).

but then we already have someone in this thread who was tested for RYR1 and showed no mutation:

Sharing the results of two rounds of genetic testing for other's reference. On Mick McGill's advice above (@mickmgill) I requested a test of the PHKA1 gene, which was negative. I see now he has been banned, so perhaps that was a poor decision! In any case I list the genes I have been tested for below. All have been negative except for a mutation of the MYPN gene which had the variant c.2816C>T (p.Thr939Met) and which was found to be heterozygous. My doctors do not seem to think this is the cause of the issue and will investigate more genetic issues with further tests.

I have had the same symptoms for 16 years - pain 3 days after cycling. I also run (up to and including marathons) and occasionally have this issue there as well, albeit much less pronounced. 41 year old male. Scandinavian and Ukrainian heritage. Tried low carb, high carb, stretching, not stretching, rolling, not rolling, simple sugars, no sugar, and, of course, bananas. The only thing that works is to keep exercising - and even then only most of the time!

Good luck everyone! Thanks for the solidarity!

round 1:
ABCC9, ACTA1, ACTC1, ACTN2, AGL, AGRN, ALG14, ALG2, ANO5, ATP2A1, B3GALNT2, B4GAT1, BAG3, BIN1, CACNA1C, CACNA1S, CAPN3, CAV3, CCDC78, CFL2, CHAT, CHKB, CHRNA1, CHRNB1, CHRND, CHRNE, CLCN1, CNTN1, COL12A1, COL6A1, COL6A2, COL6A3, COLQ, CPT2, CRYAB, CSRP3, DAG1, DES, DMD, DNAJB6, DNM2, DOK7, DOLK, DPAGT1, DPM1, DPM2, DPM3, DSC2, DSG2, DSP, DYSF, EMD, EYA4, FHL1, FKBP14, FKRP, FKTN, FLNC, GAA, GFPT1, GLA, GMPPB, GNE, GYS1, HCN4, HNRNPA2B1, HNRNPDL, ISPD, ITGA7, JUP, KBTBD13, KCNJ2, KLHL40, KLHL41, LAMA2, LAMB2, LAMP2, LARGE1, LDB3, LIMS2, LMNA, LMOD3, LRP4, MATR3, MEGF10, MTM1, MUSK, MYBPC3, MYF6, MYH2, MYH7, MYL2, MYL3, MYOT, MYPN, NEB*, PKP2, PLEC, PLN, PNPLA2, POMGNT1, POMGNT2, POMK, POMT1, POMT2, PREPL, PRKAG2, RAF1, RAPSN, RBM20, RXYLT1, RYR1, RYR2, SCN4A, SCN5A, SELENON, SGCA, SGCB, SGCD, SGCG, SLC22A5, SLC5A7, SMCHD1, SMN1, SMN2, SNAP25, SQSTM1, STAC3, STIM1, SUN1, SUN2, SYNE1, SYNE2, TAZ, TCAP, TIA1, TMEM43, TNNC1, TNNI3, TNNT1, TNNT2

round 2
ACAD9, ACADM, ACADVL, AGL, ALDOA, CPT2, ETFA, ETFB, ETFDH, FKRP, GAA, GYG1, GYS1, HADHA, HADHB, ISCU, LDHA, LPIN1, PFKM, PGAM2, PGK1, PGM1, PHKA1, PYGM, RYR1, SLC22A5, SLC25A20, SUCLA2, TANGO2, TK2

one more:

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.

 

[RhabdomyolysisMaster]

Check this link: https://rarediseases.org/rare-diseases/ryr-1-related-diseases/ and especially this paragraph:



but then we already have someone in this thread who was tested for RYR1 and showed no mutation:



one more:

I think, that does not mean, that he cannot have it. I changed 2 messages with a guy from this thread and his doctor said, when he mentioned this thread, that theoratically everybody could have a different disease. Even though all in this thread have very similar symptoms.

But i do not know if i got your statement from the message correctly, but i hope so otherwise i am sorry.

 

[Golden.]

I think, that does not mean, that he cannot have it. I changed 2 messages with a guy from this thread and his doctor said, when he mentioned this thread, that theoratically everybody could have a different disease. Even though all in this thread have very similar symptoms.

But i do not know if i got your statement from the message correctly, but i hope so otherwise i am sorry.

oh for sure, it might be entirely possible that their are different causes for the same symptoms, but I find the triggers oddly specific. especially that these attacks happens not during the initial exercise, but after a period of rest and that they are often triggereby going down the stairs or downhill. Especially that last part is very odd to me. I had a day where I did an 90 minute VO2 max workout on my smart trainer without problems. But when I took the stairs one hour later I was in utter pain.

Did anyone ever try adding strength training with a focus on eccentric movements to their routine? As cycling relies heavily on concentric movements and the attacks are triggered by eccentric movements maybe some kind of muscle imbalance plays a role after all. Not sure why this would trigger attacks of this kind, but I now added two 30 minutes strength training sessions to my week. I'll report back later!

 

[globecanvas]

MHCyclist, thank you so much for the info about your diagnosis. It's always good to get more detailed diagnostic info, if it helps even one person.

My current "episode" has been going on for about two weeks. I tried walking down the hill with my wife yesterday and had to turn around after about 50 feet. I was probably not much above resting heart rate. It's hard for me to see how my particular case could be MH. I do sweat a lot when working hard but the one thing I'm certain is not triggering the condition is working hard. I will try icing though and see if that helps.

 

[RhabdomyolysisMaster]

Has someone tried to combine cycling with jogging? So for example, you go jogging the one day and the next day you go cycling, then you go jogging again and so on. If yes what were the results? Was there something different, or just pain in the upper and lower legs? And for how long did you do it?
Thanks in advance

 

[SAL9000]

I had another attack two weeks ago. The first since my participation in this thread in the spring. After that event I enjoyed a rich and full season of mountain biking, averaging 4-5x, 8-12+ hours a week from April - October without a single episode, until a few weeks ago, that is.

This most recent episode occurred after five days of zero activity preceded by five days of fairly intense mountain biking courtesy of a road trip to warm environs. After said inactivity and upon returning home I went alpine skiing - the hike from the parking lot to the ticket office got me primed, the eccentric loading of skiing to the first left started it, and the first run down the hill completely finished me off.

The aforementioned episode corrected itself after immediately getting on the bike and cranking, after advice I received here (thank you!). No such analogous exercise in ski boots! I tried stretching and body weight squats, which may have helped a bit, but it was at least 30 minutes of me suffering immensely on an outdoor bench before even thinking about hiking back to the car.

So, as a layman, here's my judgement, at least for me: it's cramping or spasms. To reiterate my issue, this is NOT the typical "charlie horse" cramp described as a deep, blunt, intense, location-specific pain, that locks the muscle. My issue is a macro pain of the entire quads that is akin to burning with no perceivable knot or restriction in the range of motion.

I'm an otherwise very active, healthy man of healthy weight and lifestyle, nearing age 50, and have been the way forever. If I had some sort of disease or genetic problem I have to think it'd shown up in other ways a very long time ago. The last time I went in for untold tests (blood, urine, brain, etc.) all was 100% normal save for elevated CK levels (1500-3000). That is how the doctors arrived at rhabdo, but that diagnosis never sat well with me.

This fall I added to my routine indoor spinning 3-4 days a week (not much though - 30-45 minutes/day) and almost daily body weight squats and stretching. I just fell off the wagon after my biking road trip, and I paid for it.

Anyway, that's my story. It may not be the perfect explanation but it's the best I got, and it appears I've got it figured out. If I have 3-4 days of inactivity, especially after a stretch of intense activity, I'm quite susceptible to this issue. I either have to risk an episode and try to pull myself out of it (if I'm riding), or ramp up via light daily activity for a few days, maybe a week, before doing anything intense.

 

[Lcdcl]

Has someone tried to combine cycling with jogging? So for example, you go jogging the one day and the next day you go cycling, then you go jogging again and so on. If yes what were the results? Was there something different, or just pain in the upper and lower legs? And for how long did you do it?
Thanks in advance

I have a lot of experience with this involving running and biking from years spent training for an Ironman.
I could never run first after 2 days off the bike (where my episodes on the bike would usually happen after 3 days of rest). If I did first, within 10-15 minutes of running my quads would slowly get tighter and tighter and that burning sensation would feel like my legs were filling with acid. As soon as it was unbearable I’d stop running and couldn’t restart again no matter what. If I biked first I’d have no issues running. After an episode during running if I biked later that same day and powered through the pain to where it clears up I would be ok to run the next day.
The higher the training load got the less time off was needed to trigger an episode.

 

[RhabdomyolysisMaster]

Finally a diagnosis:

Today I have got the results of my DNA test and a Diagnosis. I have got a defect in a gene in the mitochondrial DNA, which causes, that a step in the cellular respiration may not work as it should. The exact gene is the MTND6 gene and there is one base which got substituted by another, which results in a missense-mutation, thus the protein can work but not as good as it should be.

Ergebnis: Variante m.14349A>G in MTND6 zu 100% detektierbar, den Aminosäureaustausch (p.(Tyr109His)) vorhersagend. (This is the quote from the results, stating what is wrong)

The problem is that this exact mutation has not been documented (or atleast it is stated in my results) in literature yet nor in a database such as MITOMAP, so I guess due to its rarity this will not be helpful for you guys but I just wanted to share it.

If someone wants the full report just message me but it is in German.

 

[Golden.]

Finally a diagnosis:

Today I have got the results of my DNA test and a Diagnosis. I have got a defect in a gene in the mitochondrial DNA, which causes, that a step in the cellular respiration may not work as it should. The exact gene is the MTND6 gene and there is one base which got substituted by another, which results in a missense-mutation, thus the protein can work but not as good as it should be.

Ergebnis: Variante m.14349A>G in MTND6 zu 100% detektierbar, den Aminosäureaustausch (p.(Tyr109His)) vorhersagend. (This is the quote from the results, stating what is wrong)

The problem is that this exact mutation has not been documented (or atleast it is stated in my results) in literature yet nor in a database such as MITOMAP, so I guess due to its rarity this will not be helpful for you guys but I just wanted to share it.

If someone wants the full report just message me but it is in German.

Hey,
Thank you for letting us now!

Are they sure this mutation is causing the issue? Is there anything you can do? Can you keep on cycling?
I'm also German so I'd be interested in the full report for sure!

 

[RhabdomyolysisMaster]

Hey,
Thank you for letting us now!

Are they sure this mutation is causing the issue? Is there anything you can do? Can you keep on cycling?
I'm also German so I'd be interested in the full report for sure!

Due to fact that there are no prior cases they cannot be a 100% sure, but I had CK-Values up to 28.000 and the doctors said, that they could not get that high without some form of gendefect. And this is the only defect gene found, thus I guess it has to be the mutation causing the issue.

I can still cycle and I will continue with it, I have no problem cycling 30-40km but if I do it too hard my muscles will breakdown. If I do not ride 50km a day under a lot of pressure, which means that I have to ride 25km in the morning in 1h and 25km in the afternoon I will be fine. So it is not really restricting me and I can live somewhat without problems, even though I would like to cycle that much.

Currently I do not know if there is a way to treat it but the doctor told me, that a guy from the genetic facility in the hospital is very interested in the case and that I should call him, which I will definitely do.

Hope that answers your questions and I will send you the report in the evening because I am currently not at home.

 

[Golden.]

Due to fact that there are no prior cases they cannot be a 100% sure, but I had CK-Values up to 28.000 and the doctors said, that they could not get that high without some form of gendefect. And this is the only defect gene found, thus I guess it has to be the mutation causing the issue.

I can still cycle and I will continue with it, I have no problem cycling 30-40km but if I do it too hard my muscles will breakdown. If I do not ride 50km a day under a lot of pressure, which means that I have to ride 25km in the morning in 1h and 25km in the afternoon I will be fine. So it is not really restricting me and I can live somewhat without problems, even though I would like to cycle that much.

Currently I do not know if there is a way to treat it but the doctor told me, that a guy from the genetic facility in the hospital is very interested in the case and that I should call him, which I will definitely do.

Hope that answers your questions and I will send you the report in the evening because I am currently not at home.

Very interesting! The highest I got Was over 80.000. At that point I wasn't able to bend my legs at all and my urine looked like blood. Don't even get me started on the pain...
I had two one week long hospital checks stays at the Neurological department of the Uni Klinik Jena, but they never bothered doing a genetic panel. I did pretty much every Neurological test available but I refused to do the muscle biopsy, because others with the same symptoms said they got no results from it. Did you ever do a muscle biopsy or was the genetic panel the fist thing your doctors advised?