Exercise Intolerance - severe cramping in calves

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I'm praying someone has some helpful advice! I am a 36 year old female who started having this problem just after I turned 18 and started college. When I walk at a slightly fast pace (walking the dog, crossing a parking lot, etc) or go up any type of incline my calf muscles start to burn. It gets very hard to walk. It's almost as if my calf muscles are locking up yet I can still walk. As soon as I stop walking, the pain is completely gone in 15 minutes or less. I don't seem to get a second wind if I keep moving, only if I totally stop and rest. My arms and upper legs are effected as well, but not as much. For my thighs, it's mostly more of a tired/out-of-energy feeling when climbing stairs. I get about halfway up a single flight of stairs before the pain starts. My arms are effected by writing more than a couple of sentences and repetative motions like putting things away in an upper cabinet, loading groceries into the car, brushing my hair, etc. I have to sit down to put on lace-up shoes because bending over causes leg pain as well. The calf pain with walking really seems to depend on the day. Some days I can only walk half a block before the pain starts and other days I can go a few blocks. I have seen a neurologist off and on for 18 years but she hasn't been much help. I have a long list of things it is NOT, but no definite diagnosis. After doing my own research, I'm convinced that it's a metabolic muscle disease but I'm not sure which one. Mahybe Glycogen Storage Type 7 or 5? Or maybe myoadenylate deaminase deficiency. I would love to find people with similar symptoms or these specific disorders so I can pick their brains for ideas! I am switching to a new neurologist in 2 months but with all that I've been through, I'm not holding out too much hope for an answer. I have had lots of blood tests, EMGs, a brain MRI, a muscle biopsy, a genetic test or 2 (myotonia congenita test was done for sure), autonomic testing, etc. There are a few irregularities in some of the results, but nothing specific to any one disorder. Can anyone help me????

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  • Posted

    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/

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  • Posted

    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!)

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    • Posted

      Much of your description could be McArdle disease. That is an inability to utilise the energy stored in the muscles (as glycogen) - which causes a severe energy shortage. The pain we get on activity/exercsie is not from lactic acid, as we don't get a rise in those levels. It may be worth you taking a look, if you haen't already. There is a link further up the comments.
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    • Posted

      I do have other symptoms- most of which I'll post from another website  that I posted in awhile back- (I have several health issues- Crohn's disease, asthma, ulcers, sleep apnea, and even had acromegally from pituitary tumor which was cured by removal of tumor- )

      "ok folks, I've got a bit of complicated scenario going on, and not getting any answers from docs despite extensive tests by infectious disease, rheumatism docs, endocrine docs (I had acromegaly in 2000- was 'cured' via removal of tumor- but the acro wasn't causing my symproms that I'll describe below) seen by many different docs- Some suggest Fibro- some write it off as my Crohn's - some suggest it's just my sleep apnea causing the issues- (However I'm no longer snoring at night but don't know if I'm still partially waking many times an hour or not- I can't use the sleep apnea machines because of ostomy issues)

      Symptoms- Exercise intolerance-

      I can only do physical activity like walking, or raking for about 10 minutes before muscles begin to burn and hurt bad enough that it makes me stop- If I over do it, I find I have to rest for 1-3 days to recoup- as I'm overdoing it I get weak, shaky, sweaty, sick to stomach, thinking becomes very tough- feel like I'm going to pass out.

      Burning Muscle pain-

      My muscles burn like they have a buildup of lactic acid- this burning hurts- it's constant, even at rest- worst area is neck shoulders- but arms, legs and back muscles also affected-

      CONSTANT muscle tension- which is the cause of much of the muscle burning pain I believe- I was on hydrocodone for about 3 years, and this helped alleviate the tension quite a bit- I came off the drug, and now docs won't re prescribe them, and the tension is getting worse- have trouble even keeping my head up- have to lay it back on couch to take tension off the muscles, and consciously try to relax the muscles- lots of strained muscles due to constant tension- muscle knots- mostly in neck and shoulders-

      Thermal Regulator is broken-

      Always cold or too hot- never really comfortable- it's like having flu in summer where you're cold one second, and burning up the next- I get full body cold sweats- get too hot, then too cold- it's crazy- Had my thyroid checked- it's fine- been checked for other endocrine conditions, nothing found wrong

      Brain Fog-

      Was always a deep thinker- avid reader- now I get confused when reading things that are complicated, or too many words-- I have to now keep re-reading paragraphs because I can't seem to concentrate and lose track of what's being said- Have trouble finding words when speaking as well- that was never me-

      Wake up Exhausted

      Non refreshing sleep- (might be due to sleep apnea- or worsened by it if I still have it)

      Night sweats-

      Head to toe soaked in morning- this comes and goes though- and some may be due to my Crohn's disease- but happens even when in remission- so something may be causing it too

      Short of breath a lot

      When walking up a mountain, I'll very quickly, within 200 yards or so, start to lose my breath, get sweaty, shaky, feel like I'm going to pass out- Sweat will be literally pouring off me- Folks- 80 year old hikers are passing me on these trails- I'm 49 for crying out loud!

      Hands HURT in cold-

      Even holding a cold soda can hurts- have to put can down- it's very painful- pumping gas in winter is excruciating - Yeah I know, probably Renaud's -

      There's more, but can't think right now-

      Main complaints are painful muscles that burn all the time- debilitating weakness- takes days to recoup when I overdo it- exercise intolerance that has ruined my life- and cold/hot all the time.

      I should mention that I don't have ANY tender points commonly associated with fibro, nor do I have trigger points that go with Chronic fatigue I guess? My other symptoms though seem to all indicate one of the two-

      I've said it before, there is something wrong with my muscles, they are either not getting the fuel they need to keep going, OR they are getting enough fuel, but not able to convert it to energy- I've had my oxygen tested during exercise and it's fine- so that's ruled out- Oh, and my muscles will tighten up especially in my calves, when I'm walking, and not release like normal muscles should- Have to sit down, stop walking, rest them in order to keep going without the knotted up muscle pain- I could just keep going, grit teeth and bear it, but I pay for it if I do for a few days-"

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    • Posted

      I don't know if it's Mcardle's- the muscles do tighten up- especially in calves when walking- won't relax and untighten until I stop and rest for several minutes- and they will actually get weak, trembling, shaky, and just feel like they've lost the energy stores they need to keep going- as though nohting is available to them to keep htem going- I don't have dark urine though- which i beleive is a key sign for Mcardle's? No? I had a neuor ask me once if my urine was dark- I said "Not really, maybe a bit' he said "No, by dark I mean pepsi-cola dark" and I said no- so he ruled out soemthing that also has 'dark urine' as a key indicator-

      I do however seem to soemtimes get the 'second wind' that is spoken of- I'll be bent over from exhaustion, pain, sweating, can't breathe well, dizzy- then after resting, soemtimes, I'll be able to walk up the mountain without any issues- kinda like the problem just reversed itself out of the clear blue- but these 'second winds' are gettign much rarer- one or two every couple of months maybe- I still however will not be able to go more than am ile, and I'm completely doen in by the time I make it back to my vehicle- and it takes me days to recover

      This 'second wind' phenomenom was really bizarre- it was liek a switch had been turned off and I was 'back to normal' i nthe beginning stages- in the beginning, it woudl last a coupel of days- then just a day or two- then just a couple of hours, now it mostly never happens-

      I dunno- It's just very exhausting- mentally, physically-

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    • Posted

      Not having dark urine does not rule out McArdle's. Most of us would only have it perhaps once per year or less, about 50% of us have never seen it. You might try using the guidance on the AGSD-UK web site on second wind - see if you can get into it as set out. If so, I would recommend a CK blood test, and if that is raised then genetic testing for McArdle's.  
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    • Posted

      Have you had any autonomic testing done? I do get very cold in the winter and in the summer when I get too warm, I do feel sick sometimes, but not as often as you are experiencing. One thing is for sure and that is that neither of us is crazy even though we may feel like we are! It's maddening. How long has this been going on? 18 years for me which is half my life! I am seeing a new doctor in July and I really hope a fresh set of eyes plus my own recent knowledge will finally get me a diagnosis. A glycogen storage disease (type 5 or 7) seems to be the only thing that fits with my symptoms, but with so many tests already done, you'd think they would have found it by now.
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    • Posted

      I have never had urine that color- and i always check my urine because I have issues with kidney stones- I pass about 60-80 a year- and alwaysh ave to watch the urine to see if one is coming on- anyways- there always seems to be one hting or another that doesn't jive with my symptoms when concidering certain diseases- most of the symptoms fit, but the urine thing doesn't- liek with Chronic fatigue- the symptoms fit, except for swollen lymph nodes- and no trigger points- same with fibromyalgia- no tender points- but symptoms seem to fit what's goign on with me- I've had urine tested quite a bit (seems to be a favorite test with docs)- and never any elevated protiens either-

      The second wind issue- I do note that soemtimes second wind kicks in when I'm walking, soemtimes it doesn't- depends on if I'm having a 'good day' or a bad day- when I'm at my worst, I don't even get out of car- I want to, as I'm a photographer, and photograph landscapes and nature- but it's too much for me to do so- on a good day, I'll walk a couple hundred yards or so, begin to hurt, stop, rest, and I'll definately experience a secodn wind- and can go for quite awhile- certainly much farther than if i had just tried to press on through the pain

      I've had CK tests several times- as i mentioned, everythign always coems back negative- no issues-

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    • Posted

      onme thing I frgot to mention- that was pretty itneresting- there are a couple GSD's that affect a person at different stages- one, requires carb loading hte day before to try to prevent the problem- because the problem happens early in the storage process apaprently, whiel one benifits from carbs when the problem is happening- which is interestign because I've always had to carry a perpsi with me when I hike- I'll go a mile out- rest, then start back and start gettign really run down- I'll stop, drink the soda, and have enough energy to make it back to car- in ok shape- If i didbn't have the soda with me, I'd be a hurtign unit by time i got back to car- the walk out would be absoslutely miserable-

      I have not tried carb loading the day before a hike though, so can't speak to how it might help or not help- but i foudn it very itnerestign that different GSD's cause pain at different points of exercise due to glycogen being uptaken (inneficiently) at different times- and the soda issue with me immediately came to mind when I read that as i need it to get me back to vehicle on my hikes

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  • Posted

    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

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    • Posted

      I have low vitamin D also. Kidney stones too but I've only had 3 major stones and none since 2005. Are you in the US or UK? I'm in the US. I think I need to go to UK!
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    • Posted

      one more thing I forgot to mention is check out mda dot org - it has to do with muscular dystrophy, BUT it also lists a number of 'exercise itnolorance' disorders too- many of which have to do with problem converting fats, or amino acids, or glocose or whatever into energy- Some of htem I hadn't heard of before- worth checkign out to see if oen might be clsoe to what you are experiencing-
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