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Extreme quadriceps starting pain after 3-4 rest days

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Jul 7, 2015
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Very interesting, pasaglia. If you are happy to share findings from your muscle biopsy, I'm sure many of us would be very interested indeed.
I absolutely will. Very sorry for the late reply. I'll have the biopsy in October so I suspect I'll have the results late October/ early November. WiIl post as soon as I have them.
 
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Feb 17, 2016
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Hi budegan. Very sorry for the late reply. I haven't logged in in a while.

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

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

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

Sorry again for the late reply.
Sorry to hear that you're not well - I hope that you made it through the flight okay!!!

Thanks so much for replying, and very best of luck with the biopsy. As has been said in similar circumstances previously in this thread, it seems like you're taking one for the team so thank you!!!
 

MJA

Sep 28, 2019
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So glad I found this thread so I don’t feel alone. Unfortunately I have no answers. Just sharing my experience.

51 years old. Been riding for decades. Some years more, some years less.

I had a slow start this year, but have worked my way up to decent fitness, riding 8-10 hours/wk, with no more than 2 - 3 days off, for the past few months. But last week I came down with a bad cold which had me off the bike for 6 days. When I finally hopped on my trainer for a light spin, within 15 minutes, bam! Intense pain/cramping in my left outer quad. I tried to push through it, hoping it would loosen up, but to no avail. I could barely walk for an hour afterwards, but the pain receded by bedtime.

I was feeling fine the next day, so I tried another easy spin on the trainer. This time I made it about 35 minutes before the pain returned. However, it was now on the inner part of my left quad. I stopped immediately, since pushing through it didn’t work the day before.

Then today, again feeling better and hoping for some progress on the 35 minutes, I hopped on the trainer. Just 2 minutes in the pain hit my left inner quad. I knew there was no pedaling through it, so I stopped, mad as hell that I couldn’t train, and searched the web for some clues, which lead me here.

This is the first time in my life I have experienced this. It’s just so baffling for it to come out of nowhere after so many years of cycling. It’s bad enough that I was forced off by a cold, then this hits. I hate being off the bike, knowing I’m losing fitness that’s increasingly hard to attain and maintain as my age progresses.

Guess I’ll give it another shot tomorrow.
 
Jun 5, 2018
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Dear fellow sufferers and cycling colleagues
I am a paediatrician from Brisbane. I would’ve been on the forum much earlier but I’ve had trouble logging in for quite a while realising it was my browser.
I am drinking my endura rehydration solution as we speak. I think I have cracked the case but unfortunately don’t have any proof at present. I do believe we share a common condition related to an abnormal enzyme glycogen synthase the same as in the horse polysaccharide storage disorder PSSM 1.
I have not looked into it any further but I’ve had a number of investigations including muscle biopsy and metabolic testing. I have had the symptoms for 20 years and had many episodes have rhabdomyolysis and unfortunately didn’t realise until reading this post a few years ago that it is the same condition and I’m not the only one suffering . The pattern is similar. If I ride regularly I never get any symptoms at all, no cramps, no pain, can ride as intense as I like,and forever (I am a very average cyclist at best (see Mcgilla on Strava)) however if I have more than 2 to 3 days without riding my bike, I get rhabdomyolysis on trivial exertion eg walking. This goes against the grain for previously described rhabdomyolysis, that is it is related to overexertion or inadequate fluids, hot weather etc. There is nothing in the literature about this condition in humans but I think we are onto it. I’m convinced it’s related to an abnormal glycogen synthase enzyme as a primary or secondary event. I do believe that Steph Valberg finding this condition in horses is embarrassing for us poor humans. My theory for it not being that common is it tends to come on later in life and not many people are athletes like us (he he). My first episode came on after doing a half marathon when I was 26 years of age. I stopped running for a few days and had my first bout of rhabdomyolysis in my calves. I started cycling as mentioned 20 years ago and it’s only come to now to realise what the problem is. I’m hoping that we can come to that answer and I do believe we all have, a never described condition in humans, a variety of PSSM1 or very similar. It could also be possible that another protein called glycogenin could be at fault. The only way to prevent it is to exercise regularly without breaks and have a low carbohydrate diet. The main reason I want to have this formally diagnosed is my wife just thinks I have obsessive cycling disorder and won’t let me take my bike on holidays even though I’m always limping around even after a short walk ( as well as help you guys). I’m looking forward to hearing everybody’s feedback. My overall plan would be to have a study done, potentially have as many people as possible have bloods sent to a metabolic laboratory in whichever country, I just don’t know what to ask for yet but do have a metabolic colleague who will be giving me advice. If I wasn’t so busy at work I would have enough time to organise a website where everyone put their details ( privacy issues of course) eventually write it up as a medical paper although I am not into research, I just work clinically (let me know if someone out their does research). Be keen to hear your responses on such a frustrating painful condition.
Regards
Mike

Dr Mike McGill
Paediatrician
Suite E, Ramsay Place
137 Flockton Street
Everton Park 4053
Brisbane, Qld
Australia
 
Reactions: ScottyC1969
Jun 5, 2018
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I had the quad pain episode Monday as described 2 posts up. This morning I went to a sports PT who thought it was a classic overuse injury. I disagree with this diagnosis. The level of pain, the unfocused nature of it (different specific muscles in each quad), the unusual triggers (spinning easy after a rest week), it just doesn't make sense. I am a well trained athlete but I am not overtrained.

I tried riding again today, pushing a little harder from the beginning as somebody up-thread suggested, but I didn't make it 5 minutes from my house. I had to walk home. There was no question of pushing through the pain, when I got home I was afraid that bending my leg would rip the quad in half. I can understand how some sufferers have gone to the ER for fear of compartment syndrome or some other emergency. I can move around now but my legs feel sore and bruised, as if they were beaten with a pipe.

I feel that I can rule out a localized physical cause such as muscle pull, trapped nerve, etc. The pain is on both sides, and the specific affected muscles were different today than they were Monday.

I don't see any alternative now except to take yet more time off the bike. This is very disappointing to me as the racing season has just begun and this is usually my best time of the year.
 
Jun 5, 2018
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Hi all
I've had a number of episodes of this issue and have been working with my coach (Phd with focus on sports science and genetics) and some sports doctors, and have come up with a hypothesis as to what is going on:

Onset of the condition in my case:
  • relatively high training / racing load
  • 3-4 days of inactive rest
  • normal / increased carb and sugar intake during the training load, and importantly no moderation /and often an increase in carb and sugar intake immediately during the rest period (ie pigging out a bit post a stage race / big block, or at least not reducing intake during this period)
Manifestation
  • pain as described above, in quads, calves, hammies, abductors, glutes.
  • importantly the fact that during an episode the pain moves around (anterior, posterior, right leg, left leg) indicates that this is not a nerve/skeletal issue
  • significantly increased CK levels indicating some for or myopathy
  • CRP levels normal indicating that it isn't an autoimmune issue
Hypothesis
  • the issue is an enzyme related issue in the muscles specifically related to the production of glycogen synthase.
  • glycogen synthase is the enzyme which is responsible for converting glucose into glycogen for storage in muscle cells.
  • in a "normal" person, during high load, levels of glycogen synthase increases in order to store fuel to meet the increased requirement for energy for the body. When exercise load decreases, the body automatically regulates the level of this enzyme as the body's need for stored glycogen reduces.
  • the theory that we are working with is that in my case, the body is not regulating this enzyme level, and so the body is continuing to convert glucose into glycogen and packing it into the muscle cells.
  • the problem is twofold in that firstly exercise has stopped and so the glycogen is not being used (but continues to be stored) and sugar and carb intake has not reduced (and often increased) so there is excess in the body and it is being stored.
  • the theory is that the muscle cells get overloaded with glycogen and when exercise is introduced, the cells literally tear as a result of being overloaded.
  • this accounts for the pain felt, as well as the increased CK levels.
  • the hypothesis is that this is a genetic issue and there isn't a "cure" as such
Prevention and treatment
  • active rest as opposed to inactive rest has been effective in preventing onset (ie. 90 minute low intensity sessions with not more than a day of inactive periods).
  • significant reduction of carb and sugar intake as the rest period starts
  • during the most recent episode I went into a LCHF (virtually carb free) diet and within 2 days had no more pain
  • during the episodes, multiple, short (10-20min) sessions until onset of pain, with aim of stimulating metabolism and effectively burning off glycogen
  • once pain had subsided, introduced low intensity IMTG rides for the first few sessions.
  • use of ibuprofen to assist with inflammation in Muscles and for pain during the episode
  • increase water intake to assist kidneys with CK load
As I said, this is a theory that the guys i am working with have come up with and it seems to make sense and be working for me. I'm sharing it with you simply because I know the frustration and the pain associated. If (and hopefully we don't have another episode given our prevention strategy) we have another episode, we will need to do a muscle biopsy to test the theory - obviously invasive so would prefer to avoid!!

Once again, this is a theory - hopefully it helps!!
Hi Drewza101
I think you are spot on with the number of your suggestions as per my recent post #254. I do believe the condition we have is related to glycogen synthase being overactive adding too many 1,4 glycosidic bonds compared with 1,6 bonds which adds extra glucose onto the glycogen chain but continues to be upregulated If there are too many rest days (>2 days) and is not turned off sufficiently once exercise is has begun. I suspect it is the polysaccharide storage disease described in horses, never in humans. I suspect there is a polymorphism in glycogen synthase described by Stephanie Valberg in horses 20 years ago. I do believe the answer will be in serial muscle biopsies showing increased normal glycogen levels in rest days, possibly a DNA test. It disappointingly has never been described in humans but it looks as though most people who are posting this have the same condition, guessing it is more common than we think. There are 15 glycogen storage diseases and this has never been described in humans and I suspect we are onto something.
It has nothing to do with stretching or any other condition and Unfortunately I don’t think any treatment will be available for cure. The key is to exercise frequently, the draft horses have at least a 20 minute run per day and they don’t get the disease, They also swear by a low carbohydrate diet which may be a possibility. It does appear in the muscle biopsy of horses that there is an abnormal glycogen. My muscle biopsy did not show abnormal glycogen so I suspect it is due excess normal glycogen And unable to turn off the glycogen synthase which keeps over producing glycogen .
Regards
 
Feb 17, 2016
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@mickmcgill68 - this is extremely interesting.

Amen to "The main reason I want to have this formally diagnosed is my wife just thinks I have obsessive cycling disorder and won’t let me take my bike on holidays..." (although fortunately my missus is incredibly understanding about it - even if she thinks it's all in my head!).

Thanks a million for posting and count me in for the study :)
 
Reactions: mickmcgill68
Jun 5, 2018
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Dear cycling colleagues

Please spread the news to send your blood to Invitae in San Francisco, it is a metabolic lab analysing glycogen storage panel DNA cost $250. I’m sending mine from Australia. My working diagnosis is a glycogen synthase defect not being switched off causing glycogen build up and recurrent rhabdomyolysis after days of rest off the bike. It presents with severe quad pain on minimal exertion. It is similar to a condition in quarter horses called polysaccharide storage myopathy as per my post #254 in this forum. It may not be the answer but it’s worth while checking so many cyclists as possible Who have the condition after days off the bike please send bloods to Invitae along to Invitae in San Francisco. You can mention my name.
regards
Mike McGill
Brisbane
 
Jun 5, 2018
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Hi,
I have had a strange experience this week. I have been following my base training program for about 10 weeks with riding everyday including recovery rides etc.

Then for different reasons I had to take 4 days of from riding over the weekend. Then on Monday 20 minutes into my warm-up, I got extremely sore muscles in my left quadriceps. I had to stop, it was so painful.

Tuesday morning i tried to mount my bike again, but after 5 minutes, I got this extreme pain again and had to stop. Later I visited the chiropractor who thought it was a trapped nerve in the back, but she couldn't find anything, and it had no effect.

Wednesday morning I tried again, but same story. I couldn't even bike to work, which takes 5 minutes. I consulted my doctor who said it was over training, and that I should take 14 days off. I was/am a little skeptical because I have never heard of over training bringing on such severe pain. And I haven't experienced any of the symptoms related to it.

The pain is hard to describe but feel like acid in the legs that burn, and it doesn't go away. Here 24 hours after my short ride to the doctor, my legs are still sore. The pain only comes on when I bike or walk down the stairs, not up.

By accident I found this thread on a danish forum, translated into English here, and the OP basically explains the exact same story. Same symptoms with walking on stairs only biking a few km's etc. it reveals that quite a few people have experienced the same problems, without ever getting a proper diagnose.

Everyone describes how this has started after a few days of rest due to traveling and so on.

Anybody experienced anything like it, or can explain what might cause it. I can not find anything on the english-speaking web.
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
 
Jun 5, 2018
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What is your hip flexibility like? If I say "do an ilio-psoas stretch" do you know what I mean? And if you do, what does it feel like? What about if you do the Cobra yoga position - do you feel that pulling down the front of your abdomen?

I'm not anything medical, but I have had similar problems in the past - feelings like a massive build up of lactic acid, walking stairs making things worse, major pain when biking even short distances, etc, etc ...

For me the problem was massive tightening in the hip flexor muscles. They get a real pounding on the bike - and mine also got a good workout with skate skiing and skating over the winter. Then just to help them shorten up, I have a job that involves me sitting at a desk all day. Sitting on a plane for any length of time is also a good one for sparking this off - combination of the seated position and inability to move much when you are seated.

Two occasions that really set this off for me related to really big increases in mileage. A couple of years ago I had been doing very little riding - probably 150-200km/week - and then decided to try to ride 100km a day during a two week long "Bike to Work" promotion. By about day 10 I was in major pain.

The other occasion was last year when we moved to our current house. Mileage increased a bit from what it was before, but intensity increased markedly (my commute is about 40km each way of hilly roads).

What has fixed me is a lot of stretching. I'm talking general lower body and back stretching. Of course specific hip flexor stretching comes into play as well - check out this: http://www.markmcgrath.com.au/2011/06/hip-flexor-opening/
If you're super tight, you'll need to build up to this - either by having your rear leg flat on the ground or holding onto it behind you (like your would for a standing quad stretch) or just having your knee a bit out from the wall/shin at less than vertical.

If this is the problem, be ready for some major change - which is going to feel like it's worsening before it gets better. Also watch for the possibility that you have really tight fascia (effectively the sheath of our body that encapsulates the muscles). I found out about tight fascia doing this stretch one time - I was stretching and literally heard a sound like someone was ripping a bed sheet in half! It was hellish scary - made me wonder what I'd done - but the release of tension that I felt was amazing. It did take a few weeks for the body to adjust and settle down though ...

So, yeah ... maybe that's the issue for you?
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
 
Jun 5, 2018
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quad cramping...

wow- I was blown away to read that others have suffered from this bizarre cramping issue that I have. The description is to the T and everyone who I have ever spoken to about it has no idea what I am describing and then lets me know they have never heard of such a thing. Not that this is about "misery loves company" for me, rather it is just nice to know that I am not alone...

Just the way it was described by several others is how it happens for me. The cramping occurs after 3 days off the bike. It has nothing to do with racing season, winter training or anything else that I can get a pulse on other than time off of the bike. When I take 2 days off, I can feel slight cramping coming on when walking or going up and down steps and if I ride that day, although I may have some of the cramping, I can ride through it and have no after affects. However, when I go the full 3 days off, I am dead in the water. Once on the bike after this time period the cramping will start and get so severe that I typically have to be picked up and cannot even lift my leg 3" off the ground without being in ecscrutiating pain. The cramping will start in my quads or glutes and then will transfer to different parts of my legs including calves. (I don't think it ever goes in to my hamstrings but could be wrong on this, as pain has a short memory) the pain will kind of rotate around the different areas of my legs but eventually really centers on my quads and glutes. Then I am very sore for a few days depending on how hard I pushed the pain threshold and the only way I can get back on the bike is to give it time. It typically is around 7 days off and then I am fine again.
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
 
Jun 5, 2018
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Same thing has been happening to me. It does seem to occur when I've been training a lot, followed by more than 3 or 4 days off. It sucks. It feels like my quads are super tight. It's not a cramp, more of a feeling of "no elasticity in the muscle". I tried to ride it out several weeks ago, when I really should have called someone to come get me, but you know, 'toughed it out'. 2 days later my quad swelled up like a balloon. 2 days after that and the swelling moved down my leg to my calf area.
I'm 41yrs old and have been "on the shelf" for at least 15yrs; no training or racing. And I decided to jump right back in.....
I never used to stretch either and I'm not very limber. So I'm trying to do some hip flexer stretches.
Keep me posted on what you learn and if you've found a reason/resolution.
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
 
Jun 5, 2018
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likewise

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

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

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

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

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

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

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

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

-Tim
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
 
Jun 5, 2018
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@mickmcgill68 - this is extremely interesting.

Amen to "The main reason I want to have this formally diagnosed is my wife just thinks I have obsessive cycling disorder and won’t let me take my bike on holidays..." (although fortunately my missus is incredibly understanding about it - even if she thinks it's all in my head!).

Thanks a million for posting and count me in for the study :)
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
 
Jun 5, 2018
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I'm sorry to see another couple newcomers to this discussion thread. But, strength in numbers, yeah? :)

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

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

This got me wondering about posture and bike fit, and whether how well we are fitted to our bikes would engage different muscles. Has anyone explored this?
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
 
Jun 5, 2018
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Hello All
Finally have got around to posting after dipping in and out of this forum over a few years. I'm posting to let you know what has worked for me in managing this, and to point newcomers to some of the posts that I've found most useful. This is the only forum I've found that disucsses this in any detail, yet, asking around, it seems it is not uncommon.

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

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

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

  1. Taking high doses of anti-inflammatories (Ibuprofen 800 mg, four times daily), starting two days before excercising again (3, below).
  2. Fasting over three days (attempting to deplete glycogen stores): Day 1 some fat and protein, nil, repeat nil, carbohydrates. Days 2 - 3 nil food.
  3. Jumping on bike and, with no warm up, cycling at maximum sustainable effort up hill for as long as I could endure, then spin to recover and repeat for about 20 minutes. Continued with 30 min hard riding on the flat. Then solid short daily rides until back to normal.
  4. Weeping for joy (almost).
How to manage it? Again, what Drewza101 says. Key seems to be to maintain some degree of glycogen depletion (I find a low carb healthy fat diet highly beneficial, but not sure yet if it helps ith this).

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

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

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

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

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

I hope this is helpful.
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
 
Jun 5, 2018
16
2
535
This is a shot in the dark but could possibly shed some light on what is happening to all(most?) of us. A few months back I paid for the 23andMe genetic testing. Once you get your results back, you can download the raw data and then run that data through other websites (big databases with all of the latest genetic research) that give reports for different medical related stuff. One of these is https://www.promethease.com/

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

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

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

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

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

Disclaimer: I'm not an expert and have no medical education. The research behind this stuff is relatively new. There is a list of known gene variants for MHS but there are very likely others that have yet to be discovered.
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
 
Jun 5, 2018
16
2
535
Hi.

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

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



After lowering my saddle 5mm and moving it 7mm backwards, I have not had any quad cramps since. :D


Maybe this could help others too..

EDIT:
It´s stil same saddle height for me (when measure "BB->middle of saddle"), I just ended up with more setback which felt like there´s less load on Quads and engaging hamstrings more...
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
@mickmcgill68 - this is extremely interesting.

Amen to "The main reason I want to have this formally diagnosed is my wife just thinks I have obsessive cycling disorder and won’t let me take my bike on holidays..." (although fortunately my missus is incredibly understanding about it - even if she thinks it's all in my head!).

Thanks a million for posting and count me in for the study :)
I have found the answer! Spread the news.
You will have a rare type of Glycogen Storage disease. I have the same symptoms eg severe cramps (rhabdomyolysis) after I spend more than 2 days off my bike. It is due to XS glycogen accumulating in your muscles unable to be broken down eventually bursting the muscle cell. I have been found to have have GSD 9d due to phosphorylase kinase deficiency a rare X-linked mutation ( mainly men get it) due to a random/inherited mutation of PHKA1 gene causing abnormal 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 McGill
mpmcgill@me.com
 
Reactions: ScottyC1969
Feb 29, 2016
12
0
2,530
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

I have found the answer! Spread the news.
You will have a rare type of Glycogen Storage disease. I have the same symptoms eg severe cramps (rhabdomyolysis) after I spend more than 2 days off my bike. It is due to XS glycogen accumulating in your muscles unable to be broken down eventually bursting the muscle cell. I have been found to have have GSD 9d due to phosphorylase kinase deficiency a rare X-linked mutation ( mainly men get it) due to a random/inherited mutation of PHKA1 gene causing abnormal 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 McGill
mpmcgill@me.com
Thanks so much Mike for sharing this. I will be contacting Dr Coman and getting the test test done. Will keep you posted on the results.
Scott
 
Mar 5, 2016
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0
2,580
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

I have found the answer! Spread the news.
You will have a rare type of Glycogen Storage disease. I have the same symptoms eg severe cramps (rhabdomyolysis) after I spend more than 2 days off my bike. It is due to XS glycogen accumulating in your muscles unable to be broken down eventually bursting the muscle cell. I have been found to have have GSD 9d due to phosphorylase kinase deficiency a rare X-linked mutation ( mainly men get it) due to a random/inherited mutation of PHKA1 gene causing abnormal 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 McGill
mpmcgill@me.com
Mike, what was the name of the gene they tested for exactly? I have had extensive genetic testing done with no answers. Namely:

Invitae Muscle Glycogen Storage Disease Panel

Primary panel (14 genes)
ALDOA, ENO3, GAA, GBE1, GYG1, GYS1, LAMP2, LDHA, PFKM, PGAM2, PHKA1, PHKB, PYGM, RBCK1

Add-on fatty acid oxidation genes (21 genes)
ACADM, ACADS, ACADSB, ACADVL, CPT1A, CPT2, ETFA, ETFB, ETFDH, HADH, HADHA, HADHB, HMGCL, HMGCS2, MLYCD, NADK2, SLC22A5, SLC25A20, SLC52A1, SLC52A2, SLC52A3

Add-on limited evidence genes (2 genes)
PGM1, POLG
 
Dec 31, 2018
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Dear fellow sufferers and cycling colleagues
I am a paediatrician from Brisbane. I would’ve been on the forum much earlier but I’ve had trouble logging in for quite a while realising it was my browser.
I am drinking my endura rehydration solution as we speak. I think I have cracked the case but unfortunately don’t have any proof at present. I do believe we share a common condition related to an abnormal enzyme glycogen synthase the same as in the horse polysaccharide storage disorder PSSM 1.
I have not looked into it any further but I’ve had a number of investigations including muscle biopsy and metabolic testing. I have had the symptoms for 20 years and had many episodes have rhabdomyolysis and unfortunately didn’t realise until reading this post a few years ago that it is the same condition and I’m not the only one suffering . The pattern is similar. If I ride regularly I never get any symptoms at all, no cramps, no pain, can ride as intense as I like,and forever (I am a very average cyclist at best (see Mcgilla on Strava)) however if I have more than 2 to 3 days without riding my bike, I get rhabdomyolysis on trivial exertion eg walking. This goes against the grain for previously described rhabdomyolysis, that is it is related to overexertion or inadequate fluids, hot weather etc. There is nothing in the literature about this condition in humans but I think we are onto it. I’m convinced it’s related to an abnormal glycogen synthase enzyme as a primary or secondary event. I do believe that Steph Valberg finding this condition in horses is embarrassing for us poor humans. My theory for it not being that common is it tends to come on later in life and not many people are athletes like us (he he). My first episode came on after doing a half marathon when I was 26 years of age. I stopped running for a few days and had my first bout of rhabdomyolysis in my calves. I started cycling as mentioned 20 years ago and it’s only come to now to realise what the problem is. I’m hoping that we can come to that answer and I do believe we all have, a never described condition in humans, a variety of PSSM1 or very similar. It could also be possible that another protein called glycogenin could be at fault. The only way to prevent it is to exercise regularly without breaks and have a low carbohydrate diet. The main reason I want to have this formally diagnosed is my wife just thinks I have obsessive cycling disorder and won’t let me take my bike on holidays even though I’m always limping around even after a short walk ( as well as help you guys). I’m looking forward to hearing everybody’s feedback. My overall plan would be to have a study done, potentially have as many people as possible have bloods sent to a metabolic laboratory in whichever country, I just don’t know what to ask for yet but do have a metabolic colleague who will be giving me advice. If I wasn’t so busy at work I would have enough time to organise a website where everyone put their details ( privacy issues of course) eventually write it up as a medical paper although I am not into research, I just work clinically (let me know if someone out their does research). Be keen to hear your responses on such a frustrating painful condition.
Regards
Mike

Dr Mike McGill
Paediatrician
Suite E, Ramsay Place
137 Flockton Street
Everton Park 4053
Brisbane, Qld
Australia

Mike
This sounds very promising, at least in understanding what's going on, and management if not a 'cure'. I'd be very interested in participating in a study if you can tee it up (could possbily find an excuse to come to Brisbane from Dunedin NZ, if need be or to buy you a beer or three..). As I mentioned in my post #266, my brother suffers identical problem to me, suggesting genetic condition, I think.
Thanks again
Mark Sanders
 

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