Extreme quadriceps starting pain after 3-4 rest days

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May 25, 2020
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Hi Penny. I’ve ‘given up’ cycling regularly for years. Most of the pain is gone after a month or so, but minor episodes continue for a few months. I then inevitably come back to it - am doing this now - and end up in the hospital at some point, quit again, then come back to it a year or so later. I think the key is to stay hydrated to mitigate kidney issues. But I’ve found no resolution for the pain. Good luck!
Just wondering....do you end up in hospital because of your quads or unrelated reasons hence an enforced rest? After the month or so of symptoms after giving up cycling, are you generally able to walk down stairs, hills etc?
 
May 25, 2020
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this is so interesting- thanks mike. I’m also a medical sufferer - a general surgeon in the uk - and thought it would be some mild metabolic thing. Will investigate your blood test, having been puzzled about this for years! So glad I found this group as a lot of my fr thought I was just being weak! Usually I can terminate it by some gentle cycling, but a few days without any cycling then running or sometimes walking make my quads go completely wrong


this is so interesting- thanks mike. I’m also a medical sufferer - a general surgeon in the uk - and thought it would most likely be some mild metabolic/glycogen thing. Will investigate your blood test, having been puzzled about this for years! So glad I found this group as a lot of my friends thought I was just being weak! Usually I can terminate it by some gentle cycling, but a few days without any cycling then running or sometimes walking make my quads go completely wrong so if I’m not near a bike that can be a big problem for a week or so. As you say the best way will be to learn triggers, and how to work around it. Will also try the 800mg of Brufen (don´t take it with high dose naproxen guys- they’re both NSAIDS) and low-carbs to see if that helps
As an update to post #254 in this forum, I have the same symptoms of recurrent rhabdomyolysis after I spend more than 2 days off my bike. I have been found to have phosphorylase kinase deficiency a rare X-linked mutation of PHKA1 gene causing reduced levels of muscle phoshorylase kinase and inability to breakdown muscle Glycogen (GSD9d). No treatment. Just exercise regularly or not at all, I just have to be careful.
I encourage you to contact Dr Dave Coman, Metabolic Physician in Brisbane Australia : reception@drdavidcoman.com.au who can arrange a Glycogen storage DNA analysis (free if you live in the states) of your saliva sent to Invitae in San Francisco.
regards
Mike
 
May 25, 2020
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So glad you have done this research on our behalf @mickmcgill68. Given that you have found a very likely metabolic reason for your problem (and most likely the rest of us sufferers in this discussion!), do you have any theories as to why it is worse after some rest days? I have chosen to go the “do nothing” route as spending several hours each day on a bike doesn’t really suit my life. I’m hoping to get away with brisk walking (eventually) and swimming as my form of exercise. I’m now day 11 post riding and struggling big time! I can’t walk anywhere with confidence and am desperately hoping the situation will improve
 
Feb 17, 2016
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How odd ... a new member who said he was an MD Anesthesiologist (and a fellow sufferer) made a truly excellent post on here late last night, and now that I've finally found the time to reply - mainly to thank them - I've found that the post has been removed and the member's profile no longer exists.

I know for a fact that I didn't imagine it as I get email notifications when someone adds to this thread so I can still see the text they posted.

It's a shame as I felt quite encouraged by what they'd written.
 
May 25, 2020
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How odd ... a new member who said he was an MD Anesthesiologist (and a fellow sufferer) made a truly excellent post on here late last night, and now that I've finally found the time to reply - mainly to thank them - I've found that the post has been removed and the member's profile no longer exists.

I know for a fact that I didn't imagine it as I get email notifications when someone adds to this thread so I can still see the text they posted.

It's a shame as I felt quite encouraged by what they'd written.
Yes! Same! Where did he go? It was a different angle and another route to possibly explore and I am a bit sad we cannot carry on a dialogue with him.

I am feeling both heartened and despondent as I am into week 5 of my own personal experiment. I stopped riding altogether and after 2 weeks, I was finally able to walk comfortably on the flat. I’m still too nervous to test out serious stairs. During this Covid lockdown, the pool is not an option and due to low back issues, I can’t run. I am desperate for some cardio exercise so have introduced a half hour fast spin on my indoor trainer every 4th day. I’ve done this twice now and there seems to be no ill effect. I really now just want to find that sweet spot - do the cycling I can get away with without causing a problem.
 
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Jul 7, 2015
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Just wondering....do you end up in hospital because of your quads or unrelated reasons hence an enforced rest? After the month or so of symptoms after giving up cycling, are you generally able to walk down stairs, hills etc?
Hi - I'm so sorry for the late response. I need to change my notification settings. I've gone to the hospital a few times - at first because I was hoping for a resolution, then more recently simply to check my CK levels. I've also seen a number of specialists here in NYC to no avail. Now I just run much more than I cycle, which brings on less pain and is basically manageable. I have found no sustainable way to begin cycling regularly again.
 
May 25, 2020
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Hi - I'm so sorry for the late response. I need to change my notification settings. I've gone to the hospital a few times - at first because I was hoping for a resolution, then more recently simply to check my CK levels. I've also seen a number of specialists here in NYC to no avail. Now I just run much more than I cycle, which brings on less pain and is basically manageable. I have found no sustainable way to begin cycling regularly again.
 
May 25, 2020
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Sadly, I think until someone does some serious research we will all just have to work this out for ourselves. I am conducting my own “experiments” just to see what I can get away with. So far, I can cycle every 3rd day but I go hard and fast on the flat just to get a cardio workout. I can’t run unfortunately because of back and joint related issues. I am going to slowly increase the time I can spend and then maybe introduce the odd gentle climb. I figure that if I do this every 3rd day, then I can gauge whether I end up with spasms in quads on walking after rest days. I am thrilled however that I can now walk down hills and stairs pain free - small things! All this extra walking however is causing another whole world of painful issues that I can only attribute to overuse of joints that are not used to the work. Getting old totally sucks!!!!
I’m sad for you that you are no longer riding. It is the perfect form of exercise and enjoyment outdoors that one should be able to enjoy well into old age. I’m hoping to get to the point of being able to comfortably go for the occasional recreational ride with my partner or friends without fear of repercussions. This is my post Covid wish but for now, where I live, we are only allowed out for an hour at a time with a maximum of one other person and must stay w
 
Sep 25, 2020
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Hi there, very interesting to read this all. I have been battling with this for some years now, and for me it also started just before a multistage race for which I had been training like crazy. I had to fly in, so was not able to ride for 1/2 days and during the warm up the pain became so unbearable that the ambulance took me in. Before that I had some issues with running and with walking down the stairs, but I thought the problem would disappear by not doing either of those. Very wrong of me.
One of the things that I would like to mention, is that I was a strong PALEO-diet follower back then and therefore no carbs at all in the sense of pasta, bread, rice, potatoes etc. So that would contradict the suggestions a bit that I have read earlier, that a low-carb diet would help in some way.
After the event, I went to see a physiotherapist in the country I was living in (China) but also in my home country in Europe and both the physiotherapists said that it was related to trigger points. Just after that event it was very easy for me to find the "knots" in my muscles of legs, roughly in the same spots that would give me the pains (quadriceps, biceps etc). They also explained to me, that when you exercise and keep your blood flowing, the effects of the trigger points will be minimalised but as soon as you stop the blood from flowing (rest day) the knot will tighten up the muscles and it can start hurting. This would also explain why we can't go walk down the stairs, the muscles to do so are a much tighter. Massaging the triggers points has helped, although the massaging itself can be a bit painful. Stretching would not do much for the trigger point, foam rolling would only help when done correctly.

I don't have a medical background so I don't know if this makes sense at all but I just wanted to share it here. It was a bit rainy last week and I had a couple of days with some alcohol, and the pain is back. So no stairs for me this weekend and I will probably start with a very slow ride tomorrow to see how things will go.
 
Jul 7, 2015
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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
 
Dec 5, 2020
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Hello all,

My name is Jacob, I live in The States, and I'm part of the pain family. Thing is, I'm not even an avid cyclist, though I did discover I get these symptoms when I picked up cycling for commuting back in 2012. At first, I didn't even connect my symptoms to the cycling because it was so weird for them to onset four days after my last ride. It took three distinct episodes to make the connection. Well, I'm not as passionate about the sport as some of you are, so I simply dropped riding as an exercise option.

Well, fast forward, over a seven year period, after getting into Crossfit, I was hospitalized for severe Rhabdo twice. The symptoms were the classic rhabdo symptoms, I would NOT characterize the type of pain or the duration of the pain as being the same as the cycling incidents. HOWEVER, I do wonder if I am more susceptible to any kind of exercise induced rhabdo due to the same underlying condition.

Well, fast forward to today. All the gyms are closed where I am due to COVID. So, I picked up a running habit. In my Army days, I ran all the time, but it had been years since I had a dedicated habit. I was slow and out of shape by the time I started, but over six weeks I worked up to 5 days a week, only like 3-4 miles per run. Well, long story short, I ended up with similar symptoms as when I cycled all those years ago, only this time the pain was centered more around the calves and the groin. Same sort of migrating pain (one spot one moment, another in a completely different leg a few moments later, severe muscle cramps, but not quite as excruciating as when they were in the quad all those years go).

Doctors are just as mystified by what's going on as in 2012. Imaging was done to rule out DVT. Results negative of course. I'm awaiting the results of blood work and I expect high CK and AST levels, just as before.

I've read through this entire thread, it's comforting to know other people go through this. Unfortunately, it seems like it's easier to bring on these episodes as a I get older. I have never tried the low-carb approaches described by people, especially on off days, so I'll give that a shot.
 
Dec 9, 2020
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Hi all,

I'm glad I found this thread and read through it.

30yo, male. I'm very new to cycling, picking it up during the pandemic since I can't play football/soccer.

Trying to keep my cardio up and hate just running. I've been relatively active before cycling, playing soccer for 1-2 times and strength training 4-5 times a week with the occasional stretching/yoga session. I ride mainly on Zwift doing Build Me Up FTP training plan, and occasionally outside.

This is my second episode, both happened after taking about 4 days break from cycling although I continued upper body strength training in the gym. I went to the doctor who said it was DOMS. The first time, I just assumed it was due to my inexperience with cycling. My previous experience with DOMS didn't coincide with this as the others have said, pain only happening with longer rest (4 days or more), not coming on if I continue training, and it isn't just a DOMS ache. This has never happened to me when playing football or strength training, or with running.
  • Sets in after ~4 days break from cycling
  • Localised pain within quads that shift on occurrence, can be outside or in the middle, somehow the pain mirrors on both sides
  • Triggered mainly by coming down the stairs
  • Urination not dark, always clear, well hydrated and consume electrolyte drinks
  • Do not currently smoke, drink alcohol regularly (used to 3-4 years ago)
  • Supplemented creatine, currently stopped after reading about CK levels
  • Don't think it's overtraining or fatigue, following a structured plan and felt energetic
Read on a German forum someone diagnosed with "Myotonic Dystrophy Type 2 PROMM", anyone with the same symptoms?

I have gotten quite fond of cycling and would like to continue to be able to do so, while being able to take a few days off due to other life commitments and not feel excruciating pain that makes even driving a car almost impossible.

Wishing everyone well!
 
Dec 31, 2020
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WOW! I am both shocked and grateful to have FINALLY found this thread. I've dealt with this exact issue since May 2009, and it has happened intermittently since then (2 - 3x per year). I've googled symptoms and read medical sites with nothing that I felt accurately described my exact symptoms. I'm shocked I've never come across this thread until now.

I echo everyone's symptoms, causes and general solution of time off and gradually coming back.

My first experience was about 5km into a half marathon back in 2009 at age of 27. I had been training hard to set a PB at this race and ran a last, HARD 14km run about a week out. It was a 5 hour drive to the city of the race and the morning was cold. Warmed up a bit and just went ham from the gun, got into my goal race pace and felt fine, until I didn't. Managed through that run to finish and went home a bit perplexed. After a few days things normalized and i got back to cycling, running, swimming etc. Trained up for a full marathon in July and even ran a full marathon in training and hit a PB, so was feeling confident. Flew to the race city... and the day before, I went for a light jog and BAM! Sideline cheering for me... not all bad as I got to support my wife in her first marathon finish.

All this said... yes. It happens after long periods of higher volume followed by a taper / travel / 3 - 4 days off or light training. Unfortunately, it's ruined 8 - 10 races over the years. I've talked to countless experts in a variety of fields with no concrete answers. I've kept up with stretching, rolling, massage, percussion massage etc etc and it still happens. Most recently It happened (currently dealing with it) after many miles on the bike with very few rest days and then driving ~5 hours to see family for Christmas. I was active while there, but not to the same degree. It first hit while simply walking down their relatively steep, long driveway. Simple as that. BOOM. DONE. And it happened as I was getting back in the car to drive home. I've tried cycling the past few days and cut them all short as it came on within the first 5 minutes. This morning I went for a long walk on a trail (mostly flat) but on one short section there is a bit of a steep, brief downhill.. BOOM. 20 minutes to slowly walk back to the car.

I haven't read all pages, but even just reading the first page, I am a bit comforted in knowing others literally 'feel my pain'.

Looking forward to having some fellow cyclists to work through this with.
 
Jan 1, 2021
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Hi everyone, my name is Daniel, 24 years old. I'm from Panama. I have all kind of heritage (Asian, european, native, black, etc.)
It could be hereditary, my father told me that his grandfather used to have a similar cramping pain when he stopped working for a few days, he was a farmer and did heavy work on his life. His cure and prevention was to never stop working his land, that's what my father said to me. Can't confirm it though, just guessing

It's so good to know that I'm not the only one suffering this. I have exactly the same symptoms, severe pain after a few days rest. Currently on an episode that started monday Dec 21. It happened at work, on the way to my car when walking down the stairs and that was it, crippled. Almost crying in the car on my way home. My legs warned me the day before but I was too tired and ignore it, big mistake.

However, I've been having this issue since 2012 when I started cycling seriously. It first happened to me after a serious fall that left me out of the bike for a while, day 4-5 after the fall I was walking down the stairs ar home and I couldn't move, I thought at first the reason for it was internal muscle bleeding or something (dunno, I was like 15).

Then after more or less a year it happened again after my bike year goal, a 200km ride followed by a time off the bike, this time while walking on flat, I couldn't walk without pain, this was terrible.

It's been happening to me every period of time, the only way to avoid it is keeping off the bike after the episode (you will get no pain at all) or riding everyday without more than 2 days of rest. This is how I've been dealing with this issue. However, after reading all the pages on this forum and finding out it's probably a genetic issue and the CK thing, I'm concerned that I'm hurting my kidneys and my body. I have GERD (acid reflux) and I don't know if this could have a relation with the terrible pain we suffer.

Today at day 12 I think I'm feeling ok, yesterday a bit painful but today I think I'll be better. Quarantine here in Panama so I'll be off the bike a few days. I'll pick it up again soon.

My advice if it works for you:
If you feel little pain when walking, get on the bike for at least 25-30 min before the pain really starts and you'll avoid the episode.
If you already are in an episode, don't force yourself to walk, cycle, run or jump because you will hurt your muscles. If you have to walk do it slowly, especially if walking downstairs.
Don't drink carbonated drinks.
Stay hydrated.
Eat healthy, no diet, just don't eat mcdonald's every single day.
After you successfully completed and episode, you can pick up the bike and you'll be able to delay the next episode. Eg: it took a month of training to get an episode, it'll take 2 months of training to get the next one. This is not fully confirmed but in my case, it works this way.

Thanks for reading and give me joy and relief by knowing I'm not the only one suffering this.
Also, sorry for my bad english. I'll be reading this forum regularly.

Stay safe. Happy new year.






.
 
Jan 2, 2021
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Fellow sufferer here and also very glad to have found this thread.
I found the pain sets in if I am off the trainer for 3-4 days.

Now here is a question for the rest of you.
Are you all riding road bikes or trainers? I ask because I don't have any issues when I ride my mountain bike. It only sets in once winter comes in and I move onto the trainer. Which has me wondering if it could be posture related as well?
This is just my speculation of course, I have no medical background or reference.
 
Dec 31, 2020
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Fellow sufferer here and also very glad to have found this thread.
I found the pain sets in if I am off the trainer for 3-4 days.

Now here is a question for the rest of you.
Are you all riding road bikes or trainers? I ask because I don't have any issues when I ride my mountain bike. It only sets in once winter comes in and I move onto the trainer. Which has me wondering if it could be posture related as well?
This is just my speculation of course, I have no medical background or reference.
Hi Brass,

for the longest time, I thought it was purely an issue with tightness in hip flexors and glutes, or a muscular imbalance (I'm fairly quad dominant). I ride purely road / TT and the bent over position creates a shortening in the hip flexors. In the past, I've committed to SERIOUS stretching / rolling routines and it kept the issue at bay, but I also don't think I took time off during that period. I thought this... until I found this thread and read the myriad of other possibilities with Rhabdo or other genetic disorders. I've not had my CK levels tested so that may be something I look into to ensure I'm not putting my kidneys at risk long term. The other part that really resonated with me was the time off, accompanied by heavier carb intake and moderate alcohol consumption. Whenever I'm off the bike for extended periods of time (3 - 5 days) it's usually around holidays or travel, when I'm generally less active, need to travel and indulge a bit in carb-laden foods and alcohol.

Follow-up question for the group - Those that have had CK levels tested, do I need to wait for an acute episode? Or can I get the testing done anytime?
 
Jan 1, 2021
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Fellow sufferer here and also very glad to have found this thread.
I found the pain sets in if I am off the trainer for 3-4 days.

Now here is a question for the rest of you.
Are you all riding road bikes or trainers? I ask because I don't have any issues when I ride my mountain bike. It only sets in once winter comes in and I move onto the trainer. Which has me wondering if it could be posture related as well?
This is just my speculation of course, I have no medical background or reference.
Hi Brass, I ride both road and mountain bike, same issue, on mountain bike it could take more time for the pain to show up because the gears are smaller maybe?
 
Jan 2, 2021
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Thanks for the feedback.
At the worst of it, I ended up going to my doc who ordered blood work and when the results came back was sent to the emergency because the CK levels were very high and placed on an iv while the kidney function was tested. Their thoughts were the same as other MDs, Rhabdo but that test came back negative as well. More genetic tests were done, all were negative for any disorder.

The mountain bike rides are normally in and out of the saddle which is why I thought it could be a factor, since even after several hard days I don't have any trouble when taking a week off. On the trainer though, I will get the baseball bat to the thigh pain after just two rides followed by 3-4 days off.
For example,
Mtb:
7 days of consecutive 3-5 hr hard rides followed by 7 days off, no issues.

Trainer:
2 days, each 20 minutes of easy spinning followed by 3 days off. 4th day, both legs severely cramped during an easy trail walk.
 
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Dec 31, 2020
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Hi friends... Quick timeline of my most recent (and current) episode.

Trained long and hard all 2020, no real breaks / time off since we weren't travelling anywhere.
Trained up to and including Christmas Day, then travelled 5 hours by car to visit family.
Was active all day Saturday and no symptoms, but ate way too much festive treats, coupled with some moderate alcohol and probably not hydrated enough.
Sunday was way more sedentary, had some work to do on computer and was sitting a lot, and then visiting (more sitting). Same diet as Saturday.
Monday morning packed up to get ready to go. Inlaws driveway is long and steep and we had a big dump of snow. Got stuck towards top so hopped out to walk down and grab a shovel... BOOM.
Tried riding Tuesday. NOPE.
Tried riding Wednesday. NOPE.
Tried riding Thursday. NOPE. Instead went for a long walk on a trail nearby my house and it was perfect... until about an hour in I went down the only moderate decline and BOOM.
Chilled Friday and was able to do 20 minutes in the evening on a stationary bike... light to moderate. Felt good. thought I was out of the woods.
Saturday walk on the trail... BOOOOOM.
Went to the ER so I could discuss and get CK levels tested. Came back at 2700, which is HIGH, but not as high as other numbers I've seen on here. They kept me over night on an IV fluid drip to hydrate and flush while testing kidneys. Kidneys are fine and levels came down by this morning, but still a bit higher than typical.

Back home now and feel pain free... but there's always that little, teeny, pinch I can feel. Docs at the hospital were as perplexed as the rest of us, but at least I can now tell them all that I'm not alone in this... and I'm not crazy!

I should also mention that I've been fasting (water + Tea + Electrolytes) since Dec 31.. No carbs to burn...

Next steps for me are to schedule a follow up with my family physician (who is also a Sports Medical Doc). I've discussed this with him before, but never with Rhabdo in the mix. Maybe he can send me for more testing to see if we can sort this out.
 
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Jan 2, 2021
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If you are in the YYC area, pm me and I will provide the name of a specialist who was looking at my case. I don't know that it would help beyond providing the medical community a larger sampling to study.
 
Dec 31, 2020
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If you are in the YYC area, pm me and I will provide the name of a specialist who was looking at my case. I don't know that it would help beyond providing the medical community a larger sampling to study.
Thanks, I'm in Ottawa. I'd be keen to discuss with the specialist and share my experiences and test results if it holds value.
 
Dec 31, 2020
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EVERYONE: Netflix documentary 'Diagnosis' - Episode 1.

THIS IS US!

Angel is an extreme case, for sure, but the root cause must be the same!

has anyone else watched this?
 
Apr 12, 2009
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EVERYONE: Netflix documentary 'Diagnosis' - Episode 1.

THIS IS US!

"Carnitine palmitoyltransferase 2 (CPT2) deficiency is a condition that prevents the body from using certain fats for energy, particularly during periods without food (fasting). There are three main types of CPT2 deficiency: a lethal neonatal form, a severe infantile hepatocardiomuscular form, and a myopathic form.[1] The neonatal and infantile forms are severe multisystemic diseases characterized by liver failure with hypoketotic hypoglycemia (extremely low levels of ketones (substances produced when fat cells break down in the blood) and low blood sugar), cardiomyopathy, seizures, and early death.

The myopathic form is characterized by exercise-induced muscle pain and weakness and occasional myoglobinuria (rust-colored urine indicating breakdown of muscle tissue).[2] Mutations in the CPT2 gene cause CPT2 deficiency. It is inherited in an autosomal recessive pattern.[1] Treatment is based on avoidance of prolonged fasting and a low-fat and high-carbohydrate diet.[3] "

I don't recall rust-coloured urine at any point with this and I would say that most of my episodes happen at times I'm very well fed rather than any fasted state (holidays, etc). So, I don't think this explains my issue but it could be a related thing for sure.
 
Jan 4, 2021
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Hi,

long time lurker of this thread, now I made an account. I had three episodes this year. All with elevated CK levels way above 9000. I also had three hospital stays were the checked me for everything (MRI, EMG, ENG, blood test, Ischaemic forearm test etc etc). Long story short, they couldn't find the cause.

EVERYONE: Netflix documentary 'Diagnosis' - Episode 1.

THIS IS US!

Angel is an extreme case, for sure, but the root cause must be the same!

has anyone else watched this?
You got it the wrong way round. The effect is the same (rhabdomyolysis - rapid breakdown of muscle fibre), but not the underlying cause. CPT-II deficiency is a very rare disease, so rare it's highly unlikely everyone here with these symptoms has it.
 

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