Exercise Intolerance - severe cramping in calves

Hi. Perhaps we are in touch already? This does sound very like GSD Type 5 (McArdle Disease), although most of us have symptoms from age under 10. However, it is known for symptoms to become apparent later, especially in the teens and 20s.  If you have not already read the following page, I suggest that you try. It leads you through whether it could be McArdle's, and what to do next. (Find the AGSD-UK web site and look at the Type V McArdle Disease page, then the first bullet point under the heading "About the disease".) If it looks possible, please do contact me directly via the AGSD-UK web site. I am the  Type 5 McArdle's Co-ordinator for the UK, I can then assist you further.

https://www.agsd.org.uk/

Veggie- I tried looking for my previous post years ago which describe pretty much the exact same things you describe- I've been asking all over the net about this problem- no answers yet- A couple of things I will add/ask are- Do you also suffer from 'brain fog'? (You just feel like you have a bad cold- can't think well- like your mind is really tired), also, do have problem regulating temperature? (I'm almost always cold- even in summer- but when I'm not cold, I'm overheated- feel sick to stomach, just feel ill from the heat- I can't seem to find a happy medium- it's like my body core is cold, but when I raise the body core temp- i go right past comfortable to overheated- it's awful not begin able to get comfortable temperature-wise)

I've always suspected that it's a 'energy supply problem' where the muscles aren't getting enough fuel to keep them going like normal people can- I don't know if it's a problem where the body doesn't turn food to energy properly, OR if it's a problem where the energy simply isn't making it';s way to the muscles properly

I suspect that when normal people exercise, once their bodies begin running out of fuel, the lactic acid begins building up, they experience the burning/pain/cramping too- but instead of after only a few minutes, they go for like hours before this process starts happening- with me, just typing this is causing it in my arms, shoulders and neck right now- and I constantly have to stop to let the burning subside- usually after a few minutes- It's getting so bad that a few times a day now I have to take the tension off my neck by laying my head back for several minutes- I'm beginning to have trouble just keeping my head up now-

Do you also suffer from something called 'bracing'" (Where your muscles are constantly tensed- like you would 'brace yourself' by tensing your muscles right before a crash, or slap across face or whatever)- I simply can not relax my muscles- I'm constantly tense now- which i think might be a part of the problem- tensed up muscles use a lot of energy- and being tense all day would exhaust the energy supply it would seem

Like You, I'm not getting any answers either, and am losing hope- Docs just shrug and declare 'perhaps fibro- perhaps Chronic fatigue' or they lay the blame on my Crohn's disease- I know Crohn's causes fatigue- but this isn't just fatigue- this is exhaustion AND pain AND burning in the muscles just like lactic acid burning/pain. I've been weak with Crohn's all my life, and never had these types of pain with it before- and infact I was always very active- had loads of energy, and great stamina- then something happened, and I slowly began degrading health-wise to the point I'm at today- and I know the muscles simply are not getting enough fuel for some reason- there is something wrong with either the food to fuel conversion process, OR with the delivery to the muscles process- something has gone haywire somewhere

Try mentioning this to your doctors- it sounds like your muscles simply aren't getting enough fuel to sustain them like normal people's muscles do-

There are a few 'exercise intolerance' conditions out there- but they are quite rare- there are also some 'myalgias', and while more common, are still pretty rare- Chronic fatigue produces these type problems, and fobromyalgia can too- but I have no 'trigger points' or 'tender spots' that almost always accompany these conditions

It has been a very long frustrating battle- and I know how you feel- it's awful not getting answers- and i don't have any helpful advice for that- but also have your docs check for lyme disease- if lyme is prevalent in your area- (however, lyme, and another condition similar to lyme doesn't always show up on tests- ugggh!)

Hi Veggie- it's been goign on for me since 1990 when it first began- I'd have a few days a month where i felt more tired than usual- then as them onths progressed, I found myself napping, which was very unusual for me- then it becam 5-8 days a month, then 12-14- then it got to point hwere I felt awful most days of them onth with brief intervals where I felt 'normal' - now it's all the time, and I'm gettign worse- it has progressed slow but steady for all these years now-

I have had tests for nurological problems, myopathies etc- not a battery of tests, but for specific ones- polymiositis, is one i remember- a couple of others- Had tests with electrodes to test nerve functions- thsoe came out only slightly bad- nothing to suggest the issues I'm havign though- All my tests always come out normal- the only hting I've had wrong really test-wise was low vitimin D- severely low- but got that back up to normal range- but still no improvement-

I can live with pain- but add in weakness, and the whoel exercise intolorance issue, and that was what put me on the disabled list in the end- The weakness is just overwhelming- and what makes it more frustrating is when you go to a doc and try to explain that you are weak, and htey look at you and declare "Well IO soemtimes get tired too- that comes with gettign older"- EGADS- I don't mind beign tired- I DO mind being so weak I can't do anything but sit around- I wish i knew how to explain it better to docs- At most they just shrug and say "Probably your Crohn's" or "Might be Chronic fatigue"- that's about hte best I get from them when they don't find anythign in the test results-

[[A glycogen storage disease (type 5 or 7) seems to be the only thing that fits with my symptoms,]]

problem is, as I've foudn out, that the symptoms are common to quite a number of health issues-

I

Hi Veggie- I'm in US- The majority of the stones I pass go through with only very mild- to moderate discomfort- and even the oens that put me down for a few hours are still small- compared to some folks who get quite large stones- so even htough I get soem that are excruciating- most are not, and even the oens that are are far better than some folks get- some folks have to have them surgically removed because they are to large to pas- thankfully mine have all passed- most without too much discomfort-

I'm sure htere are good docs i nthe US who can track down what the health/pain/weakness issues are- but I'm just too tired to pursue it anymore- too many dead ends- too many let downs- just when I think I'm onto a possible answer- the results show otherwise- It's been a long hard road- I went from an almsot hyper-active full of energy hard working person who loved working 12-14 hour days- hard physical work- logging, carpentry- always cutting splitting wood just for hte excersize mostly- to now I can't harldy type without pain- and all i nthe prime of life too- Having that rug of health and energy yanked out from under me has been very difficult to accept- As you no doubt know- I hope you get your answers-

One thing I'll suggest is to try Magnesium- that does help me some when the burnign pain gets the worst- I just have to remember to take it more often- I'm also goign to give a fewm ore htigns a try like Chia seeds (Yep- the ch ch ch chia commercials you see on TV)- suppsoedly they help with energy- we;ll see- also just learned abotu theanine taken with powdered caffien- it's suppsoed to work without hte jitters/nervous tension- the theanine does soemthign to the caffien to make it less jittery acting- I have to watch out for stimulants because they often make my symptoms worse- Relaxants seem to help more- which was why hydrocodoen worked so well- but I took myself off of it after 3 years- and wow was that hard to do- now docs won't represcribe is because of all the abuse of drugs and crackign down on docs prescribign it- oh well-

I've been taking Valerian as a calmative at night- I think it helps relax muscles somewhat- not great- but a little- Magnesium though does the most for me so far- just wish it helped more- but a little is better than nothign i guess-

Hey Veggie mamma- onem ore htought- I've suspected for a long time that the problem might be related to an 'fuel supply' problem, (Where the body can't convert food into fuel very well) or an 'fuel uptake problem' (where the body turns food into fiuel, but the cells can't take it in properly to convert it to energy).

Researchign diabetese it seems that the body turns food into glocose, then supplies the glocose to hte cells, but in order for the cells to uptake hte glucose, it needs insulin- otherwise the cells can't take in the glucose

All previous tests though with me at least, never showed signs of diabetese- but my symptoms and real world experience tell me that somethign is broken in the "Food to energy" process somewhere alogn hte line- I simply do not get enough energy to keep me going like a normal person does- I'm convinced that the problem lies somewhere in the chain of events that happen between eating and the cells takign in the glucose for energy production.

The only other htings I can think of is that the cells take in the fuel fine, but are soemhow unable to utilize that fuel properly, or it's an amino acid carbohydrate uptake problem of soem kind- both of which supply energy to cells as well-

It's frustratign because I don't even really know what to look for on the itnernet regarding what might be wrong- Mcardle's does kidna seem to describe it, but I'm lackign the key indicator for it, and suppsoedly the neurological tests I had doen didn't indicate it-

Whatever we have, it's 'exercise intolorance' related- that's for sure, but what causes it? According to 'right diagnosis' there are over 115 possible causes of exercise intolorance- (many of hwich can be ruled out right away of course), and many which are extremely rare and unlikely to be the cause-

In my case, I have Crohn's- have always had it, and i think it's possible that over the years, the Crohn's has caused soemthign to go awry in the energy creation/energy utilization process somewhere alogn hte line

I just wish i coudl find a doctor who woudl say soemthign long thel iens of "Yup- certainyl sounds liek an energy problem of soem kind- I won't rest until we find out what it is if possible- there must be an answer that we're overlooking-"

Crohn's messes with the body's ability ot break down and digest food properly- and when that gets messed up- over time, I woudl htink it somehow might cause issues in the delivery process of energy- I do not beleive the Crohn's is the problem, I personally beleive the Crohn's has caused a condition- but unfortunately docs just shrug hteir shoulders when their standard blood tests, nuerological tests etc coem back ok and blame it on 'possible Chronic fatigue' or fibro- or whatever-

You've probably already done so, but incase you haven't-  'right diagnosis' webiste has a 'symptom checker' where you can keep addign symptoms to narrow down possible causes (like "Muscle pain" + Cognitive issues" + "Sleep Problems" etc- just type in 'right diagnosis symptom checker into google- it should brign yopu right there

myoadenylate deaminase deficiency might be a good bet and is under-diagnosed, indeed, very much ignored.  Screening for this condition is done with a ischemic forearm test, which also screens for GSD type 5 (McArdles).  Full exertion during the test is important.  A failure of ammonia levels to rise is indicative of myoadenylate deaminase deficiency.  You might try taking D-ribose, a sugar used to treat myoadenylate deaminase deficiency.  It is very safe.